Today marks cycle 8 of my every-three-week chemo schedule. I’m tolerating it pretty well, I’m happy to say. The antiemetics work wonders, and I just plan for about a week of being super wiped out, so it is manageable.
Oh, did I mention that I had an allergic reaction to the carboplatin during my fourth infusion? Thankfully it was caught and reversed quickly, so no big deal. But it does mean that I cannot have carboplatin again. I was only scheduled to have 4 rounds of it anyway this time, but it is a little scary knowing that it is out of the arsenal now.
Also, fluid has slowly been building up around my right lung (the good lung) so I had a thoracentesis and they drained a liter of fluid. Sigh. I continue to drain my left lung at home every three days, so the fun goes on.
In some very exciting and hopeful news, my wizard from Colorado told me that he has been growing my cancer cells in his lab and he thinks he knows why my cancer has stopped responding to the TKIs (yay research!!). It seems my cancer has developed a resistance called IGF1R, Insulin Like Growth Factor 1 Receptor. AND there is a TKI that targets this, ceritinib.
Commence the hoop jumping! These drugs aren’t cheap, so step one was getting it approved by insurance (it is approved for ALK, not ROS1) which we did! But the copay was really high, so the hospital helped me apply for a program through the manufacturer. After lots of paperwork, hours on the phone, and shipping delays, I finally got the meds on Monday. The moral of the story for my fellow patients is that there is usually work around these high prices, so don’t give up.
The plan now is to continue on with the chemo in addition to my 5th TKI. While ceritinib worked great for my cells in the lab, there is no guarantee that it will work as well in my body, so the safer route is to keep the chemo going and add the new med.
To recap my years spent on TKIs:
1. Crizotinib = November 2013-December 2017 (4 years and 2 months)
2. Entrectinib = December 2017-October 2018 (11 months)
3. Lorlatinib = November 2018-January 2019 (3 months)
4. TPX-0005 / Repotrectinib = February 2019-July 2020 (18 months)
5. Ceritinib = January 2021-???
Let’s hope that my wizard’s theory is correct, and that ceritinib will give me a nice, long run.
Showing posts with label ROS1. Show all posts
Showing posts with label ROS1. Show all posts
Wednesday, January 06, 2021
Monday, August 03, 2020
What a Week
A lot happened last week. In a nutshell, I’m out of my clinical trial, and I spent 4 days in the hospital dealing with malignant fluid around my heart.
I had been doing my monthly clinical trial visits virtually since March, but as things have been getting more worrisome (increasing shortness of breath) my Wizard wanted to do a full evaluation in person. So, I went from extremely careful pandemic behavior to getting on an airplane. I’m very glad I went. I had a full battery of testing, and discovered that I had fluid around my heart (pericardial effusion). My doctor was going to admit me on the spot, but understood that I wanted to come back home first, and felt it was safe to delay to later that day. My beloved family picked me up at the airport and dropped me off at the emergency room. At least I got to spend a few minutes with them.
Thankfully, the heart issue was not what they considered “emergent” (no need to rush right into a procedure), and they were able to wait until the next day, make a plan, and get me scheduled. And I got a private hospital room, so that was nice.
They placed a small drain into the pericardial sac and drained out the fluid. I had to stay in the hospital for three days to observe the draining, but it was largely uneventful (thankfully). The next steps are a follow up echocardiogram and then getting scheduled to start chemo.
It’s funny looking back on how I have changed since I did chemo in 2013. Then, I was much more Season 1 Buffy (“give me something pointy and tell me where the big bad is”) and this time around I’m finding a lot of resonance with Season 6 Buffy (“Life isn’t bliss, life is just this, it’s living”).
I’m going through the very painful repotrectinib withdrawal, which is certainly impacting my mood. The aches are remarkably similar to the entrectinib withdrawal I went through in 2018, so at least I know what these awful muscle pains are about.
I’m holding out a lot of hope for my chemo redux. It worked amazingly 7 years ago, and all of my treatments since then have been laser-focused on the ROS1 mutation, so it makes sense to go more broad-spectrum.
If you have some well-wishes to spare, I will happily accept. This is kind of a lot to absorb, plus pandemic and all.
I love this song, and I feel like it could be the theme song for 2020.
“Anger wants a voice, voices wanna sing
Singers harmonize till they can't hear anything
I thought that I was free from all that questionin'
But every time a problem ends, another one begins
And the stone walls of Harmony Hall bear witness
Anybody with a worried mind could never forgive the sight
Of wicked snakes inside a place you thought was dignified
I don't wanna live like this, but I don't wanna die.”
- Vampire Weekend’s “Harmony Hall”
Thursday, November 07, 2019
Bumpity Bump Bump
It’s about time I update this little blog.
I’m doing decently, much better than I was when I wrote the last post. The increase in steroids has proven to be incredibly helpful, making it much easier for me to function. My balance is still a mess, but I no longer feel motion sickness when I move my head (that was pretty awful). I’m embracing all the fun steroid side effects (hello again, puffy face), because I feel so much better thanks to these not-so-fun meds.
Currently, the main issue is my balance. I’m fine when I’m seated, but I feel wobbly as soon as I stand up. If I’m holding onto something, I’m pretty stable, so I casually lean on things like nobody’s business. Really, if there were a contest to see who could nonchalantly lean against any wall or ledge, I’d be the champ.
The general consensus from doctors across three states is that the changes in my cerebellum are treatment effect, rather than new growth. The trial drug is known for causing balance issues, so who knows what is causing what. The plan now is to watch and wait, and hope that my cerebellum can heal and nothing starts growing again.
Just another bump in the road.
Meanwhile . . .
My latest chest CT showed that I had a small pleural effusion. That was a shocker. These are not uncommon in the lung cancer world, but it was a brand new one for me. I haven’t had a thing wrong with my lungs since 2013 (kinda funny that my lung cancer has mostly caused brain issues for the past 6 years). I had a thoracentesis, which drained 240 ml of malignant fluid out of my chest cavity. It was much less scary than it sounded, though I had to go for the procedure twice since they told me you can take blood thinners the night before (you can’t). Reminder to self - if you are being given instructions over the phone about an upcoming surgical procedure and they sound incorrect, question them. Don’t become self-conscious about second guessing instructions too much.
The upside of having malignant fluid drained from my body was that I was able to ship it to Colorado and donate it to the ROS1 project, so they can grow cell lines for research. Precious fluid!
Another pothole in the pavement.
Also meanwhile . . .
My tumor markers continue to rise, so who knows what is going on, except that likely trouble is brewing somewhere.
Bump bump bump.
I recently read The Miraculous Journey of Edward Tulane, and it is hard not to feel grateful for what you have after reading that.
If you haven’t read that book, do yourself a favor and check it out. The world feels a little bit more doable afterward.
I couldn’t resist that last one.
I’m doing decently, much better than I was when I wrote the last post. The increase in steroids has proven to be incredibly helpful, making it much easier for me to function. My balance is still a mess, but I no longer feel motion sickness when I move my head (that was pretty awful). I’m embracing all the fun steroid side effects (hello again, puffy face), because I feel so much better thanks to these not-so-fun meds.
Currently, the main issue is my balance. I’m fine when I’m seated, but I feel wobbly as soon as I stand up. If I’m holding onto something, I’m pretty stable, so I casually lean on things like nobody’s business. Really, if there were a contest to see who could nonchalantly lean against any wall or ledge, I’d be the champ.
The general consensus from doctors across three states is that the changes in my cerebellum are treatment effect, rather than new growth. The trial drug is known for causing balance issues, so who knows what is causing what. The plan now is to watch and wait, and hope that my cerebellum can heal and nothing starts growing again.
Just another bump in the road.
Meanwhile . . .
My latest chest CT showed that I had a small pleural effusion. That was a shocker. These are not uncommon in the lung cancer world, but it was a brand new one for me. I haven’t had a thing wrong with my lungs since 2013 (kinda funny that my lung cancer has mostly caused brain issues for the past 6 years). I had a thoracentesis, which drained 240 ml of malignant fluid out of my chest cavity. It was much less scary than it sounded, though I had to go for the procedure twice since they told me you can take blood thinners the night before (you can’t). Reminder to self - if you are being given instructions over the phone about an upcoming surgical procedure and they sound incorrect, question them. Don’t become self-conscious about second guessing instructions too much.
The upside of having malignant fluid drained from my body was that I was able to ship it to Colorado and donate it to the ROS1 project, so they can grow cell lines for research. Precious fluid!
Another pothole in the pavement.
Also meanwhile . . .
My tumor markers continue to rise, so who knows what is going on, except that likely trouble is brewing somewhere.
Bump bump bump.
I recently read The Miraculous Journey of Edward Tulane, and it is hard not to feel grateful for what you have after reading that.
"Edward knew what it was like to say over and over again the names of those you had left behind. He knew what it was like to miss someone. And so he listened. And in his listening, his heart opened wide and then wider still."
"But in truth,' said Bull, 'we are going nowhere. That my friend, is the irony of our constant movement."
If you haven’t read that book, do yourself a favor and check it out. The world feels a little bit more doable afterward.
"If you have no intention of loving or being loved, then the whole journey is pointless."
I couldn’t resist that last one.
Sunday, August 04, 2019
Unclear
Things are not great in CancerLand. My rising tumor markers and MRI changes have confirmed that the spot in my cerebellum has grown back and is starting to cause symptoms.
The great/terrible/ironic thing is that I’m not facing widespread cancer progression; the only spot causing troubles is the same bugger in the cerebellum that we tried to remove back in October.
My sense of equilibrium is off, and I was having headaches and nausea until we increased my steroids earlier this week. Now, some of the imbalance is likely caused by my trial drug - it is a frequently reported side effect - but certainly some is from the mass. Friends who knew me in my physical theatre / Dell’Arte days will find it strange that I now feel intimidated by a staircase lacking a rail. I reminisce about how I used to stand on someone’s shoulders without batting an eye. Flowers for Algernon’s Charlie comes to mind: I know I have done all sorts of physically challenging things in my life, but I cannot fathom them in my current wobbly state. To make things even more strange, when I sit down, I feel completely normal. It’s only when I stand up that I feel like I’m on a boat.
Where do we go from here?
The best case scenario is that I can get another brain surgery, and that they can remove the entire mass from my cerebellum. Waiting to hear from the neurosurgeon to see if that is possible.
The second option is to get another round of targeted radiation to the mass and hopefully knock it out. I’m doubtful that will be possible, since it has only been 9 months since I had radiation to that area.
If neither of those are possible, I will switch to a chemo that gets into the brain (likely Temodar).
For now, I wait for the experts to weigh in on what is possible at this point.
And we try to squeeze more fun out of the summer.
The great/terrible/ironic thing is that I’m not facing widespread cancer progression; the only spot causing troubles is the same bugger in the cerebellum that we tried to remove back in October.
My sense of equilibrium is off, and I was having headaches and nausea until we increased my steroids earlier this week. Now, some of the imbalance is likely caused by my trial drug - it is a frequently reported side effect - but certainly some is from the mass. Friends who knew me in my physical theatre / Dell’Arte days will find it strange that I now feel intimidated by a staircase lacking a rail. I reminisce about how I used to stand on someone’s shoulders without batting an eye. Flowers for Algernon’s Charlie comes to mind: I know I have done all sorts of physically challenging things in my life, but I cannot fathom them in my current wobbly state. To make things even more strange, when I sit down, I feel completely normal. It’s only when I stand up that I feel like I’m on a boat.
Where do we go from here?
The best case scenario is that I can get another brain surgery, and that they can remove the entire mass from my cerebellum. Waiting to hear from the neurosurgeon to see if that is possible.
The second option is to get another round of targeted radiation to the mass and hopefully knock it out. I’m doubtful that will be possible, since it has only been 9 months since I had radiation to that area.
If neither of those are possible, I will switch to a chemo that gets into the brain (likely Temodar).
For now, I wait for the experts to weigh in on what is possible at this point.
And we try to squeeze more fun out of the summer.
Tuesday, April 09, 2019
My (Slightly) Glowing Report
The MRI was definitively stable, even slightly improved. Most of the spots have either gotten a little bit smaller (by about 1 mm - but I’ll take it!) and/or become less bright on the scan. I’m calling it “stable plus.” I was very pleasantly surprised by these results! Now I am only traveling to Colorado once a month. And that will feel like a breeze!
Sunday, February 03, 2019
Last Great Hope
When I was first diagnosed with metastatic lung cancer in 2013, the situation was dire. Cancer has spread extensively throughout my body. The only option offered to me for treatment was chemotherapy, a triplet of chemicals which had a 1/3 chance of reducing the cancer, and a 1/3 chance of holding it stable. The last 1/3 was left up to my imagination. Even with treatment, they expected I had about 8 months to live.
Thankfully, fortune smiled upon me and we discovered that my cancer was driven by a ROS1 mutation. This meant that we had a whole new line of attack: we could try to stop the cancer right at the source.
Since November of 2013 I have been taking daily pills that target my ROS1 mutation: Xalkori for 4 years (which worked like a charm, except for a few pesky brain mets, the known weakness of Xalkori). Next were the 11 bumpy months on entrectinib, where slight changes in the brain mets left my doctors scratching their heads after each MRI. Progression vs radiation necrosis, so hard to tell. Then Lorlatinib which didn’t seem to do much of anything.
That brings me to where I am now: TPX. My Last Great Hope.
All of your star-wishing (and a fair bit of persistence) must have worked, because I have secured a spot in the clinical trial! That is, assuming I pass a battery of tests on February 12. And I won’t really believe it until I take the first pill.
I know that I am not completely out of options if this drug fails me, but it brings me to the end of the line for ROS1 targeted drugs. There have been great advances in immunotherapy since my diagnosis, so there are more thing to try. But I’m sure hanging a lot of hope on TPX.
So, wish me luck passing the tests to gain entry to the trial, and then hope it works!
But first - the family is headed to California to make some memories!! Cancer needs to take a back seat for a week. This is family time!
Thankfully, fortune smiled upon me and we discovered that my cancer was driven by a ROS1 mutation. This meant that we had a whole new line of attack: we could try to stop the cancer right at the source.
Since November of 2013 I have been taking daily pills that target my ROS1 mutation: Xalkori for 4 years (which worked like a charm, except for a few pesky brain mets, the known weakness of Xalkori). Next were the 11 bumpy months on entrectinib, where slight changes in the brain mets left my doctors scratching their heads after each MRI. Progression vs radiation necrosis, so hard to tell. Then Lorlatinib which didn’t seem to do much of anything.
That brings me to where I am now: TPX. My Last Great Hope.
All of your star-wishing (and a fair bit of persistence) must have worked, because I have secured a spot in the clinical trial! That is, assuming I pass a battery of tests on February 12. And I won’t really believe it until I take the first pill.
I know that I am not completely out of options if this drug fails me, but it brings me to the end of the line for ROS1 targeted drugs. There have been great advances in immunotherapy since my diagnosis, so there are more thing to try. But I’m sure hanging a lot of hope on TPX.
So, wish me luck passing the tests to gain entry to the trial, and then hope it works!
But first - the family is headed to California to make some memories!! Cancer needs to take a back seat for a week. This is family time!
Thursday, January 24, 2019
Return to Oz
I woke up last Wednesday to a phone call from my oncologist confirming that the MRI I had just had showed that, while it was slight, my brain mets are progressing. My fancy new TKI (tyrosine kinase inhibitor - a drug targeted to my ROS1 mutation), Lorlatinib, was not holding my cancer in check. The next best chance for me was to get into a trial for the newest TKI in development, TPX-0005 (it is actually far enough along now in development that it has its generic name, repotrectinib, but I fell in love with it when it was just TPX, so it will always be TPX to me). The nearest site for this trial is at the University of Colorado, a powerhouse for ROS1 research. My longtime readers may recall that back in 2014 I took a trip there, my journey to Oz to meet the Wizards so that I could learn more about my newfound mutation.
With all of this on my mind, I got up and starting figuring out how to stay alive.
Actually, that’s not true. The first thing I did was get back in bed and get under the covers. Sometimes, this is a lot to take in.
THEN I got up, and called to get a copy of my latest MRI. My oncologist is wonderfully thorough, and asked that I take a disc to my surgeon at Karmanos, in case he had any other thoughts or ideas. I collected my disc and delivered it to Karmanos.
I actually managed to wait a full 24 hours before contacting the Wizards (who I have come to know in the years since my visit to Oz, because of my work with the ROS1ders). I knew my oncologist was taking care of setting up the trial for me and I was trying to let things happen the way they are supposed to ... but then I had to email them. This is my survival, after all.
And I got Out of Office replies from both! Crap crap crap. That is probably why my oncologist hadn’t given me an update yet.
And then, a few moments later, a magical reply came from one of the Wizards. He connected me with the people who do the enrollment for the trial and gave me some warnings for where things can get tripped up.
The next morning I was on the phone with the wonderful trial coordinator, my Glinda, going through part 1 of the trial consenting. One tricky part of this trial is that they want a tumor sample. No problem for me, I thought, I just had a chunk of tumor removed from my cerebellum. So I signed the consent to give Glinda permission to collect my tumor sample and get me ready to consent into the trial.
All signs are pointing to yes! I start busying myself figuring out how to manage all the flights I will need to take (anyone used Angel Flights?) and accommodations in Colorado.
However, I keep saying to myself, I’ll believe I’m in the trial when I swallow the first pill. You may recall when I literally had the pills in my hand and was not allowed in the entrectinib trial? Clinical trials are capricious beasts.
Unfortunately, tracking down my tissue has proven to be more difficult than I expected. I told her that my surgery was done at Karmanos, but my main hospital is the University of Michigan. She contacted them, but Karmanos said that they sent my tissue off for NGS (next generation sequencing, to see if I had acquired new mutations or if it was still just ROS1. Still just ROS1, by the way). She assured me that she can still collect it, but clearly it is becoming more time consuming.
AND THEN
%#*%~%#?!
Total panic.
I’ve had my heart set on TPX ever since the summer of 2018 when my oncologist tested my cancer cells against all the current TKIs and found them most reactive to TPX.
I belong in this trial.
I reach out to my ROS1 sistas, Janet and Lisa (who I guess become the Scarecrow and Tinman in my analogy?). I get an appropriate string of swearing when I tell the news. Then they reach out to their connections to get the behind-the-scenes scoop about the trial. Their folks reply at lightning speed encouraging me to get on the waitlist; more spots are coming.
My oncologist confirms that he feels it is safe to wait a few weeks.
So now I wait. And dream of Oz.
When I’m anxious, I knit. Let’s just say I’ve been going through a lot of yarn.
If you are wishing on stars for me, wish that I get a spot in the TPX trial, and that my cells were correctly predicting that this will be the drug that controls my cancer.
With all of this on my mind, I got up and starting figuring out how to stay alive.
Actually, that’s not true. The first thing I did was get back in bed and get under the covers. Sometimes, this is a lot to take in.
THEN I got up, and called to get a copy of my latest MRI. My oncologist is wonderfully thorough, and asked that I take a disc to my surgeon at Karmanos, in case he had any other thoughts or ideas. I collected my disc and delivered it to Karmanos.
I actually managed to wait a full 24 hours before contacting the Wizards (who I have come to know in the years since my visit to Oz, because of my work with the ROS1ders). I knew my oncologist was taking care of setting up the trial for me and I was trying to let things happen the way they are supposed to ... but then I had to email them. This is my survival, after all.
And I got Out of Office replies from both! Crap crap crap. That is probably why my oncologist hadn’t given me an update yet.
And then, a few moments later, a magical reply came from one of the Wizards. He connected me with the people who do the enrollment for the trial and gave me some warnings for where things can get tripped up.
The next morning I was on the phone with the wonderful trial coordinator, my Glinda, going through part 1 of the trial consenting. One tricky part of this trial is that they want a tumor sample. No problem for me, I thought, I just had a chunk of tumor removed from my cerebellum. So I signed the consent to give Glinda permission to collect my tumor sample and get me ready to consent into the trial.
All signs are pointing to yes! I start busying myself figuring out how to manage all the flights I will need to take (anyone used Angel Flights?) and accommodations in Colorado.
However, I keep saying to myself, I’ll believe I’m in the trial when I swallow the first pill. You may recall when I literally had the pills in my hand and was not allowed in the entrectinib trial? Clinical trials are capricious beasts.
Unfortunately, tracking down my tissue has proven to be more difficult than I expected. I told her that my surgery was done at Karmanos, but my main hospital is the University of Michigan. She contacted them, but Karmanos said that they sent my tissue off for NGS (next generation sequencing, to see if I had acquired new mutations or if it was still just ROS1. Still just ROS1, by the way). She assured me that she can still collect it, but clearly it is becoming more time consuming.
AND THEN
Tuesday night I get an email from one of the Wizards saying that all of the trial spots are taken.
Total panic.
I’ve had my heart set on TPX ever since the summer of 2018 when my oncologist tested my cancer cells against all the current TKIs and found them most reactive to TPX.
I belong in this trial.
I reach out to my ROS1 sistas, Janet and Lisa (who I guess become the Scarecrow and Tinman in my analogy?). I get an appropriate string of swearing when I tell the news. Then they reach out to their connections to get the behind-the-scenes scoop about the trial. Their folks reply at lightning speed encouraging me to get on the waitlist; more spots are coming.
My oncologist confirms that he feels it is safe to wait a few weeks.
So now I wait. And dream of Oz.
When I’m anxious, I knit. Let’s just say I’ve been going through a lot of yarn.
  |
| My latest is a collection of octopus toilet paper cozies. I made one, then the kiddos wanted one in each of our colors. Then they wanted hats for them. M is excited that it matched the style of hat I made for her. The two in the back still need their hats. They will be done soon, trust me. |
If you are wishing on stars for me, wish that I get a spot in the TPX trial, and that my cells were correctly predicting that this will be the drug that controls my cancer.
Sunday, December 09, 2018
Pause
I am now 9 weeks post brain surgery on my cerebellum.
And 1.5 weeks post targeted radiation to my cerebellum.
And 4 weeks post-entry into my second clinical trial, the EAP for Lorlatinib, which we hope will control (dare we say shrink?) the metastases in my brain.
Right now, we are in a very pleasant phase I am calling ...
The Pause.
I don’t have another doctor’s appointment until my MRI on December 17, so until that time I am going to assume that all of these treatments have done what they were supposed to do, that my new clinical trial med Lorlatinib is holding my cancer at bay, and all I have to deal with are some pesky side effects.
I’ll take it.
In the mean time, I am enjoying trying to get back to some basic level of fitness (brain surgery followed by radiation really knocked me down, and I find myself huffing and puffing just from walking fast). And enjoying movie nights with my kiddos, planning for the holidays, soaking up laughs at Pointless, complaining about my new diet*, and appreciating feeling relatively well. I’m sure hoping for a lot of boring news from the scan and lots of boring months to follow. These past two months have been the hardest two of the whole 5.5 years (and counting!) that I’ve been in treatment for metastatic lung cancer. Boring sounds really good to me!
*one of the side effects of the new drug is that it makes your cholesterol and triglycerides go astronomically high. I am currently on a low-carb diet to see if I can get them to come down. I never knew I loved carbs so much. Or not having to think about what I can and cannot eat.
And 1.5 weeks post targeted radiation to my cerebellum.
And 4 weeks post-entry into my second clinical trial, the EAP for Lorlatinib, which we hope will control (dare we say shrink?) the metastases in my brain.
Right now, we are in a very pleasant phase I am calling ...
The Pause.
I don’t have another doctor’s appointment until my MRI on December 17, so until that time I am going to assume that all of these treatments have done what they were supposed to do, that my new clinical trial med Lorlatinib is holding my cancer at bay, and all I have to deal with are some pesky side effects.
I’ll take it.
In the mean time, I am enjoying trying to get back to some basic level of fitness (brain surgery followed by radiation really knocked me down, and I find myself huffing and puffing just from walking fast). And enjoying movie nights with my kiddos, planning for the holidays, soaking up laughs at Pointless, complaining about my new diet*, and appreciating feeling relatively well. I’m sure hoping for a lot of boring news from the scan and lots of boring months to follow. These past two months have been the hardest two of the whole 5.5 years (and counting!) that I’ve been in treatment for metastatic lung cancer. Boring sounds really good to me!
*one of the side effects of the new drug is that it makes your cholesterol and triglycerides go astronomically high. I am currently on a low-carb diet to see if I can get them to come down. I never knew I loved carbs so much. Or not having to think about what I can and cannot eat.
Monday, November 19, 2018
Radiating My Brain
I have completed treatment 2 of 5 for my targeted brain radiation. You may recall that, since there WAS living tumor in the section they removed from my cerebellum, we decided to radiate the perimeter around what was removed, in case there were any tumor cells there.
Well, let me just say that
Radiation
Is
Kicking
My
Butt.
Check out the imprint the super-tight mask leaves on my face.
I was mentally prepared to feel wrecked after surgery; I was not so prepared for this. In addition to the exhaustion, I have had awful headaches and nausea. I talked to my Rad Onc about this and he said it was from brain swelling, and prescribed a course of steroids. Yay, more steroids. But if they stop the headaches, I’m happy to take them.
The upside of spending my life on the couch is that I have been doing projects like teaching my kids how to use the sewing machine.
It’s still Lung Cancer Awareness Month, and I still have lung cancer, and I’m still raising money to fund research specifically focused on my rare ROS1 mutation. I’m trying to reach $8,000 by the end of the month. Here’s the link: https://www.supportalcf.org/ros1/ToriTomalia
Well, let me just say that
Radiation
Is
Kicking
My
Butt.
Check out the imprint the super-tight mask leaves on my face.
 |
| It wears off after about an hour. |
The upside of spending my life on the couch is that I have been doing projects like teaching my kids how to use the sewing machine.
It’s still Lung Cancer Awareness Month, and I still have lung cancer, and I’m still raising money to fund research specifically focused on my rare ROS1 mutation. I’m trying to reach $8,000 by the end of the month. Here’s the link: https://www.supportalcf.org/ros1/ToriTomalia
Sunday, November 04, 2018
If Brain Surgery Wasn’t Enough
The good news is that my brain surgery recovery is coming along really well. I’ve even been approved to start driving again, so Jason is taking me out for some driving practice this weekend.
However, life with metastatic lung cancer continues to keep me on my toes. I’ve been in seemingly endless doctor appointments, and the plan now is to do targeted radiation to the area surrounding what was removed from my cerebellum. I am also moving to a new targeted medicine, Lorlatinib. Hence, the endless doctor appointments.
I had my penultimate appointment for the Entrectinib trial, and I am currently going through the washout period in preparation for the Expanded Access Protocol trial for Lorlatinib. As you may recall from my Crizotinib washout, the withdrawal from these powerful meds is remarkably painful. Every muscle in my body is aching, even muscles I didn’t know I had.
On Monday I have the radiation planning appointment. There will be 5 radiation sessions, every other day, beginning the following week. The main side effect is fatigue (but I’m not even over the fatigue from the surgery yet!).
I am due to begin the EAP of Lorlatinib on Tuesday or Wednesday, with all the side effects that come along with that. One of which is fatigue. Oh my!
Don’t get me wrong - I am immensely grateful to have treatment options.
I am grateful there is another targeted med for me to switch to. (And another in trials after this one.)
I am grateful that I am well enough to withstand all this treatment.
I am immensely grateful for more time with my family.
But I have to admit that this has been a lot to deal with. I know that every day I am in treatment is another day I get to live, and for that I am grateful. But some days this is almost overwhelming.
I am very grateful for the support of my community - support that I am going to have to lean on again over the next few weeks.
Thank you so much to all the folks who brought meals to my family during my recovery. It is such a comfort. I can’t help but share this particularly adorable themed meal we received. Great work, Jennie, and it tasted great, too!
In other news, November is Lung Cancer Awareness Month. The ROS1ders are raising money for more research into treatments for our rare cancer. I started this fundraiser back in 2016, for my 40th birthday - and we raised over $6,000! I am reviving it, and hoping we can hit $8,000. Here is the link to donate: https://www.supportalcf.org/ros1/ToriTomalia
Also - make sure you get out and VOTE on Tuesday. As a naturalized citizen, I take voting very seriously. So seriously, in fact, that I voted absentee and mailed in my ballot at 4 am, just before we hit the road for my surgery. I didn’t know what kind of shape I would be in on November 6, and there was no way I was going to miss voting!
However, life with metastatic lung cancer continues to keep me on my toes. I’ve been in seemingly endless doctor appointments, and the plan now is to do targeted radiation to the area surrounding what was removed from my cerebellum. I am also moving to a new targeted medicine, Lorlatinib. Hence, the endless doctor appointments.
I had my penultimate appointment for the Entrectinib trial, and I am currently going through the washout period in preparation for the Expanded Access Protocol trial for Lorlatinib. As you may recall from my Crizotinib washout, the withdrawal from these powerful meds is remarkably painful. Every muscle in my body is aching, even muscles I didn’t know I had.
On Monday I have the radiation planning appointment. There will be 5 radiation sessions, every other day, beginning the following week. The main side effect is fatigue (but I’m not even over the fatigue from the surgery yet!).
I am due to begin the EAP of Lorlatinib on Tuesday or Wednesday, with all the side effects that come along with that. One of which is fatigue. Oh my!
Don’t get me wrong - I am immensely grateful to have treatment options.
I am grateful there is another targeted med for me to switch to. (And another in trials after this one.)
I am grateful that I am well enough to withstand all this treatment.
I am immensely grateful for more time with my family.
But I have to admit that this has been a lot to deal with. I know that every day I am in treatment is another day I get to live, and for that I am grateful. But some days this is almost overwhelming.
I am very grateful for the support of my community - support that I am going to have to lean on again over the next few weeks.
Thank you so much to all the folks who brought meals to my family during my recovery. It is such a comfort. I can’t help but share this particularly adorable themed meal we received. Great work, Jennie, and it tasted great, too!
In other news, November is Lung Cancer Awareness Month. The ROS1ders are raising money for more research into treatments for our rare cancer. I started this fundraiser back in 2016, for my 40th birthday - and we raised over $6,000! I am reviving it, and hoping we can hit $8,000. Here is the link to donate: https://www.supportalcf.org/ros1/ToriTomalia
Also - make sure you get out and VOTE on Tuesday. As a naturalized citizen, I take voting very seriously. So seriously, in fact, that I voted absentee and mailed in my ballot at 4 am, just before we hit the road for my surgery. I didn’t know what kind of shape I would be in on November 6, and there was no way I was going to miss voting!
Wednesday, October 10, 2018
Home Home Home
I made it home Saturday afternoon and am now slowly rebuilding my strength surrounded by my beloved family.
The surgery went well and without complications. We won’t know for sure until we get the pathology report but the surgeon said the feel of the tumor led him to believe there is still live cancer in the section he removed, rather than all necrosis. So that’s a bummer, and may mean more targeted radiation to the area left behind. But we will cross that bridge when we come to it.
This was one of the scarier hills I have tackled over my 5+ years with metastatic cancer. There is an awful calculus that patients go through, deciding what we would be willing to give up for more time on earth. What deficits will we accept for more days? What makes life worth living? What risks will we accept for the hope of another year?
The amazing Jason stayed by my side at the hospital, sleeping (or attempting to sleep) in a non-reclining chair, which frankly doesn’t seem possible at all. But I dearly appreciated his company as I transitioned out of the weird post-surgery twilight into the early steps of recovery.
Now that I’m home, I’m totally focused on recovery. The main things are regaining my steadiness, balance, and coordination. There are subtle changes that I’m noticing, like how my handwriting looks different, though I am very pleased to see that I can still knit. Overall, I’m having to learn to move at turtle pace, rather than my preferred lighting speed. An interesting perspective shift which is probably a good life lesson. As always, I’m not sure why I have to find such hard ways to learn these lessons.
I am looking forward to tapering off these steroids and the messed up sleep and puffiness they bring.
Check out my amazing post-surgery hairdo! My Mum spent a solid hour soaking out the glue that had held the sensors in place, and which had dried into gooey, itchy chunks. She is staying with us for a bit and her help has been invaluable (far beyond just getting glue out of my hair).
The support from folks has been absolutely vital and humbling. The meals, the puzzle books, the well-wishes and prayers. All of these have allowed me to focus on healing, knowing I have a community pitching in to help! If you still want to sign up, I’ve added a few more meal requests to the Lotsa Helping Hands site. We are the “Tomalia Support Team” and our zip code is 48104.
Tuesday, October 02, 2018
Batten Down the Hatches
I saw my surgeon on Monday and all systems are go for brain surgery on Thursday, October 4.
I’m oscillating between being incredibly nervous and remarkably calm.
Acute recovery will be anywhere from 2-5 days in the hospital, and he estimates 4-8 weeks of slowly rebuilding my strength. His calm demeanor is buoying my optimism; he kept saying this is straight forward and he doesn’t anticipate any problems.
In the mean time, we have been trying to get everything ready at home, for the family, the kiddos, the business. I’ve been feeling a very literal need to get my house in order to prepare for this event. As a fairly behind-the-scenes person, I feel like most of what I do is make sure things keep moving smoothly - like a player in curling, rushing about sweeping a clear path for that granite stone to get where it needs to be.
As the surgery nears and my to-do list gets shorter, the primary thing I need to do is hand over the reins to all the trusted members of my team. A strange and liberating feeling.
Many heartfelt thanks to all the people who have reached out to offer help, meals, prayers, and well wishes. My friend Meriah is organizing all of this through Lotsa Helping Hands, so if you would like to join the “Tomalia Support Team” to learn about practical ways you could help, visit the website and you can learn more (our zip code is 48104).
I will happily accept any thoughts and prayers for strength to me and my family, and for my surgeon to have steady hands and a clear mind on Thursday!
I’m oscillating between being incredibly nervous and remarkably calm.
Acute recovery will be anywhere from 2-5 days in the hospital, and he estimates 4-8 weeks of slowly rebuilding my strength. His calm demeanor is buoying my optimism; he kept saying this is straight forward and he doesn’t anticipate any problems.
In the mean time, we have been trying to get everything ready at home, for the family, the kiddos, the business. I’ve been feeling a very literal need to get my house in order to prepare for this event. As a fairly behind-the-scenes person, I feel like most of what I do is make sure things keep moving smoothly - like a player in curling, rushing about sweeping a clear path for that granite stone to get where it needs to be.
As the surgery nears and my to-do list gets shorter, the primary thing I need to do is hand over the reins to all the trusted members of my team. A strange and liberating feeling.
Many heartfelt thanks to all the people who have reached out to offer help, meals, prayers, and well wishes. My friend Meriah is organizing all of this through Lotsa Helping Hands, so if you would like to join the “Tomalia Support Team” to learn about practical ways you could help, visit the website and you can learn more (our zip code is 48104).
I will happily accept any thoughts and prayers for strength to me and my family, and for my surgeon to have steady hands and a clear mind on Thursday!
Friday, July 13, 2018
Meh.
I got the results from my every-8-week scans for the clinical trial, and the overall reaction is ... meh.
Things are not getting better, but they also are not getting significantly worse, at least not enough to kick me out of the trial. Which, in and of itself, is a good thing when dealing with metastatic cancer. "Not much worse" is good enough for a while.
So, I will try to string together another few months (hopefully more!) giving researchers more time, and trying to hang in there until some exciting new trials are back into action (I'm looking at you, TPX-0005!).
Crossing our fingers that we are not burying our heads in the sand and missing progression in our optimism.
-----
In other news, we had a wonderful trip to Minnesota visiting family and celebrating my parents' 50th wedding anniversary! The road trip there and back, the family party, meeting up with old friends, seeing friends get married, leisurely hours playing cards and working on puzzles, helping my mom with some decorating projects, playing with my baby nephew, and so many more things were absolutely perfect.
Here's to more months, and more time where the biggest drama is on the chess board.
Things are not getting better, but they also are not getting significantly worse, at least not enough to kick me out of the trial. Which, in and of itself, is a good thing when dealing with metastatic cancer. "Not much worse" is good enough for a while.
So, I will try to string together another few months (hopefully more!) giving researchers more time, and trying to hang in there until some exciting new trials are back into action (I'm looking at you, TPX-0005!).
Crossing our fingers that we are not burying our heads in the sand and missing progression in our optimism.
-----
In other news, we had a wonderful trip to Minnesota visiting family and celebrating my parents' 50th wedding anniversary! The road trip there and back, the family party, meeting up with old friends, seeing friends get married, leisurely hours playing cards and working on puzzles, helping my mom with some decorating projects, playing with my baby nephew, and so many more things were absolutely perfect.
 |
| So many games! |
Tuesday, May 29, 2018
five.
So here we are. Five years. When I was diagnosed with metastatic lung cancer, the statistics said that my chances of living to see this day were less than 1%.
This is a sobering anniversary; I can’t help but think of all my friends who ran out of time. People who seemed to be managing treatment so well and then .... well, we know how fast the snake can turn. Why have I been so freakishly lucky in this horribly unlucky disease?
I took a stroll down memory lane to see how I wrote about this day over the past 5 years.
A cancer diagnosis inevitably leads to talk of a “bucket list.” I thought about this quite a bit when first diagnosed, but there wasn’t a whole lot that I hadn’t already done. I had been fortunate enough to travel internationally, live in several different places, experience all sort of wonderful adventures.
As I thought about mortality and time and what I wished for in this life, I realized that all I really wanted boiled down to three things.
I still have a long way to go on the first one, but I feel so fortunate to have gotten as many years as I have. When I was diagnosed, my hope was to live long enough to see our son start kindergarten. Now we are discussing middle school options. Unbelievable. So very grateful.
#2 on the bucket list is coming along well! Pointless has been up and running for almost 2 and a half years, adding on an additional space for the Pointless School of Improv after the first year. We still have many ideas of how we want the business to grow and things we would like to do with it, but it has been amazing being part of this process. When I stood on the stage for my curtain speech on opening night, I confessed that I didn’t actually think I would live to see the doors open. But I did!
The third item is humongous and audacious, but hey, dream big right? I have been amazingly fortunate to cross paths with two amazing women (yeah, I'm talking about you Lisa and Janet) who share my rare mutation, and who also made the bold decision that we needed to drive our cancer care and the research toward making our disease manageable instead of terminal. The three of us sowed the seeds of the ROS1ders, and in partnership with the Addario Lung Cancer Foundation and many more wonderful ROS1ders have developed the Global ROS1 Initiative.
These three goals are what have driven all of my decisions for the past 5 years. How’s that for singularity of focus! I suppose it would have been easier to say “I want to go to the Grand Canyon,” but I never did do things the easy way. Just ask my parents.
-----
It has been a lot, taking stock of these past 5 years. Trying to enumerate what I have been through, what my body has been through ....
But who’s counting.
-----
Five years is a significant milestone that deserved a significant gesture.
So I got a tattoo! Something borne with pain which left me forever changed. Quite fitting.
It was my first tattoo so I didn’t know what to expect, but the artist was very patient with me. Jason, the kiddos and I designed the image to honor the 5 of us surviving these past 5 years, with each of us represented by our favorite color.
It didn’t hurt much, though I had a moment that morning where I thought to myself, “wait - why am I going to get poked by needles ON PURPOSE?”
I watched the tattoo artist do all the black outlining, then when he switched to colors he said he would start with the darkest one first. “That’s yours, Jason!” I said as I looked over at him.
Then all of a sudden, the past 5 years hit me, and tears ran down my face. I started thinking about all that Jason has had to deal with, always waiting for the next shoe to drop, always ready to take over when I feel unwell, always, always, always....
It had no idea that getting the tattoo would make me so emotional. As a friend said, “It is momentous for a reason.”
-----
We marked this anniversary with bowling, a tradition we started when I was first diagnosed, when I was too weak to actually bowl, but could sit and watch and be present with the family. I had been told to "make memories" for my children, so I did it in any way I could.
We had cake, because every special occasion deserves cake. There was only one image fitting such a momentous day.
My dear friend Meriah commissioned artist Jermaine Dickerson to create this family portrait for us, not long after I was diagnosed.
So here we are, five years. I never expected to see this milestone. And yet I cannot help but hope I will see more. I'm already dreaming about that next tattoo . . . .
This is a sobering anniversary; I can’t help but think of all my friends who ran out of time. People who seemed to be managing treatment so well and then .... well, we know how fast the snake can turn. Why have I been so freakishly lucky in this horribly unlucky disease?
I took a stroll down memory lane to see how I wrote about this day over the past 5 years.
- Four.
- How Much Do You Want To Know About Your Cancer? (third anniversary)
- Cancer as Rebirth (second anniversary)
- That Time of Year (first anniversary)
- The Plural of Apocalypse (diagnosis)
- And when we found out it was metastatic and incurable: The Time is Now
A cancer diagnosis inevitably leads to talk of a “bucket list.” I thought about this quite a bit when first diagnosed, but there wasn’t a whole lot that I hadn’t already done. I had been fortunate enough to travel internationally, live in several different places, experience all sort of wonderful adventures.
As I thought about mortality and time and what I wished for in this life, I realized that all I really wanted boiled down to three things.
- See my kids grow up
- Help Jason build our dream business
- Cure my cancer
I still have a long way to go on the first one, but I feel so fortunate to have gotten as many years as I have. When I was diagnosed, my hope was to live long enough to see our son start kindergarten. Now we are discussing middle school options. Unbelievable. So very grateful.
#2 on the bucket list is coming along well! Pointless has been up and running for almost 2 and a half years, adding on an additional space for the Pointless School of Improv after the first year. We still have many ideas of how we want the business to grow and things we would like to do with it, but it has been amazing being part of this process. When I stood on the stage for my curtain speech on opening night, I confessed that I didn’t actually think I would live to see the doors open. But I did!
The third item is humongous and audacious, but hey, dream big right? I have been amazingly fortunate to cross paths with two amazing women (yeah, I'm talking about you Lisa and Janet) who share my rare mutation, and who also made the bold decision that we needed to drive our cancer care and the research toward making our disease manageable instead of terminal. The three of us sowed the seeds of the ROS1ders, and in partnership with the Addario Lung Cancer Foundation and many more wonderful ROS1ders have developed the Global ROS1 Initiative.
These three goals are what have driven all of my decisions for the past 5 years. How’s that for singularity of focus! I suppose it would have been easier to say “I want to go to the Grand Canyon,” but I never did do things the easy way. Just ask my parents.
-----
It has been a lot, taking stock of these past 5 years. Trying to enumerate what I have been through, what my body has been through ....
- 2 bronchoscopies
- 6 cycles of a 3 chemo agents
- 50 months of crizotinib
- 3 sessions of SRS
- 20 injections for bone mets
- 1 clinical trial
- 3 PET scans
- 3 bone scans
- 10 EKGs
- 17 brain MRIs
- 21 CT scans
- 1,826 days (knowingly) living with lung cancer, and all the effects and side effects of cancer treatments and procedures.
But who’s counting.
-----
Five years is a significant milestone that deserved a significant gesture.
So I got a tattoo! Something borne with pain which left me forever changed. Quite fitting.
 |
| Our daughter wrote this on the family calendar. |
It was my first tattoo so I didn’t know what to expect, but the artist was very patient with me. Jason, the kiddos and I designed the image to honor the 5 of us surviving these past 5 years, with each of us represented by our favorite color.
It didn’t hurt much, though I had a moment that morning where I thought to myself, “wait - why am I going to get poked by needles ON PURPOSE?”
I watched the tattoo artist do all the black outlining, then when he switched to colors he said he would start with the darkest one first. “That’s yours, Jason!” I said as I looked over at him.
Then all of a sudden, the past 5 years hit me, and tears ran down my face. I started thinking about all that Jason has had to deal with, always waiting for the next shoe to drop, always ready to take over when I feel unwell, always, always, always....
It had no idea that getting the tattoo would make me so emotional. As a friend said, “It is momentous for a reason.”
-----
We marked this anniversary with bowling, a tradition we started when I was first diagnosed, when I was too weak to actually bowl, but could sit and watch and be present with the family. I had been told to "make memories" for my children, so I did it in any way I could.
 |
| Strike dance! |
 |
| Strike hug! |
We had cake, because every special occasion deserves cake. There was only one image fitting such a momentous day.
My dear friend Meriah commissioned artist Jermaine Dickerson to create this family portrait for us, not long after I was diagnosed.
 |
| The 5 of us |
 |
| We each ate our own head! |
So here we are, five years. I never expected to see this milestone. And yet I cannot help but hope I will see more. I'm already dreaming about that next tattoo . . . .
Thursday, March 22, 2018
The Whole Long Story
I don't even know where to start. The past 4 days have been completely absurd.
As of Monday morning, I was out of the clinical trial because of progression in the brain, according to the MRI. The lovely ROS1 experts that I emailed asked me (repeatedly) to make sure this was definitely progression, and not a response to previous SRS treatment. I asked this question several times, but was repeatedly reassured that it was, in fact, progression. You may recall from my last post that I reached out to my rad onc to confirm that this was progression, as he was the person who has followed my brain MRIs very closely over the past 3 years and has performed all the SRS. He said he would ASAP, but was travelling and wouldn't be able to until Tuesday.
I was sent home Monday afternoon without a plan, but an appointment with my old oncologist on Tuesday (which I had to insist on getting, rather than waiting several weeks for her next available appointment).
I spend Monday afternoon reaching out to all the hospitals in Michigan that run the trial for Lorlatinib (the next ROS1 inhibitor that is in the Expanded Access Program). I had a very frustrating conversation with the nurse fielding the calls about the trial:
"You have to have ALK for this trial. It says right here it is only for patients with ALK or a rossey rearrangement."
"Yes. That says ROS1. That's what I have."
She also told me that the washout is 4 weeks long, which is not correct at all.
Tuesday morning I meet with my oncologist who acts quite alarmed at the MRI results, says I need to take steroids and I shouldn’t drive. She even suggests whole brain radiation as an option. I am pretty stunned by this, and tell her that I want to pursue the Lorlatinib trial. She has a contact at Karmanos who runs the trial, and is able to get me an appointment on Thursday afternoon.
I spend the rest of Tuesday scrambling to collect all of my records that I will need to hand deliver to Karmanos on Thursday. I watch the person working at imaging’s jaw drop when she opens my file. Almost 5 years of treating metastatic lung cancer means I have generated A LOT of CT, PET, and MRI images.
I download the Lyft app and try to figure out how I am going to do everything I need to do if I can’t drive. I start on steroids, which are not fun (my body aches, I’m exhausted but can’t sleep).
Late Tuesday afternoon I get a message from my rad onc saying that he and neuro-oncology have reviewed the MRI and say there is no progression, just response to treatment/SRS.
THERE IS NO EVIDENCE OF PROGRESSION.
What?!?
I quickly contact the trial doctor, my oncologist, and the super amazing trial coordinator. I get a note back from the trial doctor that he will try to get me back in the trial, and that the trial coordinator will contact me on Wednesday to set everything up.
Wednesday morning I send an email to the trial coordinator asking if there is any update. She replies quickly and tells me that there are lots of emails going around but there is nothing official.
The hours pass….
I hang out at home since I am not allowed to drive. I order things from Amazon since I cannot run errands. I line up childcare for the kids on Thursday, since Jason and I might have to go to Karmanos to try to get into the new trial if they cannot undo my dismissal from the entrectinib trial.
I send the trial coordinator another note, asking if there is any more info. She quickly replies that my doctors are still trying to make a decision.
Make a decision? I thought it was already decided?
I reply to her that, if my voice means anything in this decision, I feel very strongly that I should be given more time on the trail. She said she will make sure the trial doctor understands this.
By now it is after 3 pm and I’m getting nervous that the end of the business day is coming and I still don’t know what is happening. I contact my rad onc again, asking him to please contact the trial doctor since there seems to be some misunderstanding about my MRI.
I receive a note back that my lovely rad onc has just personally sat down with the trial doctor and walked him through my entire history of brain mets and SRS treatment, slide by slide, MRI by MRI. (I have been going to him for 3 years for brain met monitoring and 3 SRS treatments, and have MRIs every 2-3 months. This is a huge job.)
Then my phone rings, and it is the trial doctor. He tells me they are putting me back on the trial, and that the trial coordinator will set up an appointment for me to come in Thursday morning to pick up my pills. He says that I don’t need to have driving restrictions and I can taper off the steroids. He didn’t realize that I had had all those spots treated with SRS, and there were different styles of machines doing the various MRIs, so it looked like lots of progression to him. We discuss the Karmanos appointment, and we decide it is still worth going because I will likely need Lorlatinib at some point, and it seems smart to me to get myself into the system and meet the trial doctor now that I have the chance.
The wonderful trial coordinator emails me moments later and says to expect her call in a few minutes. She calls right on time, tells me she had already contacted the pharmacy to tell them not to throw away my pills (the thought that they would just throw away $10k+ pills is horrifying – but that’s a post for another day). She gets all my appointments for the next morning put together in record time. She is wonderful.
Thursday morning I go in, get blood work, officially get back on the trial and I TAKE MY PILLS!
I grab a quick lunch and head to Detroit for my 1 pm appointment at Karmanos. When I arrive to check in I am told that my appointment has been cancelled.
O. M. G.
I ask if there is any way I can get in to see the doctor, even briefly. I have already sent my paper records over and have the image discs in my hands, I filled out the whole patient history in their online system, and have submitted everything. I dotted all my Is and crossed all my Ts. Can’t they do something? I’m willing to wait.
So wait I do.
Finally, at 4:30 pm I get to see the doctor. She explains that my oncologist had contacted her and said that she needed to fit me in because this was a very pressing situation, so the Karmanos doctor agreed. When my oncologist found out I was back in the trial, she called Karmanos and said I wouldn’t need the appointment. This all makes sense, but wow, after the run around I had been getting, it was icing on the cake.
We had a brief talk about the Lorlatinib trial, if I was likely to qualify (it seems likely that I would, but she is going to confirm that they allow CNS only progression, and I asked if they have parameters for minimum lesion size). I asked if she has ever treated a ROS1 patient before. She has treated 5 which is decent I suppose. She seemed fairly well versed in which drugs potentially work for ROS1, even mentioning brigantinib’s pre-clinical findings. She wasn’t aware of TPX-0005 or which acquired resistance mechanisms were the common and challenging ones for ROS1 (“you’re teaching me!” – I do wish doctors didn’t seem so surprised that a patient knows something).
So, I finally finish up at nearly 5 and text Jason that I am just leaving. I had thought I would be back in time to pick up the kids from school, but obviously that didn’t happen, so he had already had to leave work and run the kids around all afternoon. He had to be back to teach at class at 7 pm, so I was keeping an eye on the time as I was driving to give him an update (traffic made the trip home much slower). But then both my phone and backup charger decided they were just done with all of this and punked out. Frankly, I don’t blame them.
But I got home and Jason got to class and the kids got fed and I got my drugs, so all's well that ends well, I suppose.
Though, I find the events of this week incredibly disconcerting. I know I don't have a vanilla cancer. I know that ROS1 is very rare and that most centers only have a handful - at most - of ROS1 patients. I know that I was the first ROS1 patient at the U of Michigan. I know that we are in uncharted territory with my treatment path – approaching 5 years with metastatic lung cancer - so they are learning as they go. But I think what bugs me is that they don’t realize that a patient who has been living with this for 5 year has probably learned a thing or two.
I have been playing this chess game for a long time now. I know that my next brain MRI could very well show actual progression, and I will be right back where I am now. But if I could possibly get another 6 months or more on this drug before I have to move on to another, I cannot sacrifice this knight carelessly. I'm hoping to keep playing this game for a long time.
As of Monday morning, I was out of the clinical trial because of progression in the brain, according to the MRI. The lovely ROS1 experts that I emailed asked me (repeatedly) to make sure this was definitely progression, and not a response to previous SRS treatment. I asked this question several times, but was repeatedly reassured that it was, in fact, progression. You may recall from my last post that I reached out to my rad onc to confirm that this was progression, as he was the person who has followed my brain MRIs very closely over the past 3 years and has performed all the SRS. He said he would ASAP, but was travelling and wouldn't be able to until Tuesday.
I was sent home Monday afternoon without a plan, but an appointment with my old oncologist on Tuesday (which I had to insist on getting, rather than waiting several weeks for her next available appointment).
I spend Monday afternoon reaching out to all the hospitals in Michigan that run the trial for Lorlatinib (the next ROS1 inhibitor that is in the Expanded Access Program). I had a very frustrating conversation with the nurse fielding the calls about the trial:
"You have to have ALK for this trial. It says right here it is only for patients with ALK or a rossey rearrangement."
"Yes. That says ROS1. That's what I have."
She also told me that the washout is 4 weeks long, which is not correct at all.
Tuesday morning I meet with my oncologist who acts quite alarmed at the MRI results, says I need to take steroids and I shouldn’t drive. She even suggests whole brain radiation as an option. I am pretty stunned by this, and tell her that I want to pursue the Lorlatinib trial. She has a contact at Karmanos who runs the trial, and is able to get me an appointment on Thursday afternoon.
I spend the rest of Tuesday scrambling to collect all of my records that I will need to hand deliver to Karmanos on Thursday. I watch the person working at imaging’s jaw drop when she opens my file. Almost 5 years of treating metastatic lung cancer means I have generated A LOT of CT, PET, and MRI images.
I download the Lyft app and try to figure out how I am going to do everything I need to do if I can’t drive. I start on steroids, which are not fun (my body aches, I’m exhausted but can’t sleep).
Late Tuesday afternoon I get a message from my rad onc saying that he and neuro-oncology have reviewed the MRI and say there is no progression, just response to treatment/SRS.
THERE IS NO EVIDENCE OF PROGRESSION.
What?!?
I quickly contact the trial doctor, my oncologist, and the super amazing trial coordinator.
Wednesday morning I send an email to the trial coordinator asking if there is any update. She replies quickly and tells me that there are lots of emails going around but there is nothing official.
The hours pass….
I hang out at home since I am not allowed to drive. I order things from Amazon since I cannot run errands.
I send the trial coordinator another note, asking if there is any more info. She quickly replies that my doctors are still trying to make a decision.
Make a decision? I thought it was already decided?
I reply to her that, if my voice means anything in this decision, I feel very strongly that I should be given more time on the trail. She said she will make sure the trial doctor understands this.
By now it is after 3 pm and I’m getting nervous that the end of the business day is coming and I still don’t know what is happening. I contact my rad onc again, asking him to please contact the trial doctor since there seems to be some misunderstanding about my MRI.
I receive a note back that my lovely rad onc has just personally sat down with the trial doctor and walked him through my entire history of brain mets and SRS treatment, slide by slide, MRI by MRI. (I have been going to him for 3 years for brain met monitoring and 3 SRS treatments, and have MRIs every 2-3 months. This is a huge job.)
Then my phone rings, and it is the trial doctor. He tells me they are putting me back on the trial, and that the trial coordinator will set up an appointment for me to come in Thursday morning to pick up my pills. He says that I don’t need to have driving restrictions and I can taper off the steroids. He didn’t realize that I had had all those spots treated with SRS, and there were different styles of machines doing the various MRIs, so it looked like lots of progression to him. We discuss the Karmanos appointment, and we decide it is still worth going because I will likely need Lorlatinib at some point, and it seems smart to me to get myself into the system and meet the trial doctor now that I have the chance.
The wonderful trial coordinator emails me moments later and says to expect her call in a few minutes. She calls right on time, tells me she had already contacted the pharmacy to tell them not to throw away my pills (the thought that they would just throw away $10k+ pills is horrifying – but that’s a post for another day). She gets all my appointments for the next morning put together in record time. She is wonderful.
Thursday morning I go in, get blood work, officially get back on the trial and I TAKE MY PILLS!
I grab a quick lunch and head to Detroit for my 1 pm appointment at Karmanos. When I arrive to check in I am told that my appointment has been cancelled.
O. M. G.
I ask if there is any way I can get in to see the doctor, even briefly. I have already sent my paper records over and have the image discs in my hands, I filled out the whole patient history in their online system, and have submitted everything. I dotted all my Is and crossed all my Ts. Can’t they do something? I’m willing to wait.
So wait I do.
Finally, at 4:30 pm I get to see the doctor. She explains that my oncologist had contacted her and said that she needed to fit me in because this was a very pressing situation, so the Karmanos doctor agreed. When my oncologist found out I was back in the trial, she called Karmanos and said I wouldn’t need the appointment. This all makes sense, but wow, after the run around I had been getting, it was icing on the cake.
We had a brief talk about the Lorlatinib trial, if I was likely to qualify (it seems likely that I would, but she is going to confirm that they allow CNS only progression, and I asked if they have parameters for minimum lesion size). I asked if she has ever treated a ROS1 patient before. She has treated 5 which is decent I suppose. She seemed fairly well versed in which drugs potentially work for ROS1, even mentioning brigantinib’s pre-clinical findings. She wasn’t aware of TPX-0005 or which acquired resistance mechanisms were the common and challenging ones for ROS1 (“you’re teaching me!” – I do wish doctors didn’t seem so surprised that a patient knows something).
So, I finally finish up at nearly 5 and text Jason that I am just leaving. I had thought I would be back in time to pick up the kids from school, but obviously that didn’t happen, so he had already had to leave work and run the kids around all afternoon. He had to be back to teach at class at 7 pm, so I was keeping an eye on the time as I was driving to give him an update (traffic made the trip home much slower). But then both my phone and backup charger decided they were just done with all of this and punked out. Frankly, I don’t blame them.
But I got home and Jason got to class and the kids got fed and I got my drugs, so all's well that ends well, I suppose.
Though, I find the events of this week incredibly disconcerting. I know I don't have a vanilla cancer. I know that ROS1 is very rare and that most centers only have a handful - at most - of ROS1 patients. I know that I was the first ROS1 patient at the U of Michigan. I know that we are in uncharted territory with my treatment path – approaching 5 years with metastatic lung cancer - so they are learning as they go. But I think what bugs me is that they don’t realize that a patient who has been living with this for 5 year has probably learned a thing or two.
I have been playing this chess game for a long time now. I know that my next brain MRI could very well show actual progression, and I will be right back where I am now. But if I could possibly get another 6 months or more on this drug before I have to move on to another, I cannot sacrifice this knight carelessly. I'm hoping to keep playing this game for a long time.
Monday, March 19, 2018
Bad-A$$ Birthday
I started off my birthday this morning in the most bad-a$$ way possible - by getting kicked out of my clinical trial. Yes, that’s right, early this morning, as I waited to get my blood drawn, my MRI results were released to my Patient Portal, and with a pleasant little “ding” I discovered that my fancy new drug has not been living up to the hype, and the cancer has progressed in my brain. I’m still kinda hazy on the details, as the report was uncharacteristically vague; no actual measurements or anything, almost a poetic take on MRI reading. But, nonetheless, I am kicked off the trial, the remaining pills were confiscated, and I was sent on my way. No plan, just set adrift.
I have an appointment with my old oncologist tomorrow; they initially said her next available appointment was in APRIL, so I used my bad-a$$ Birthday Powers and helped them find one much sooner.
I sent some bad-a$$ emails to some wonderful ROS1 experts, who sent lighting fast replies (before I even got called in to see my trial doctor) with thoughts for potential next steps and caveats. I also emailed my rad onc who lived up to his title and agreed to review my MRI and help me come up with a bad-a$$ plan. I sent bad-a$$ emails and left righteous voicemails to the Lorlatinib trial sites in Detroit so I can get the bad-a$$ ball rolling on my potential next treatment plan.
I was not bad-a$$ enough to select “Death By Chocolate” for my birthday cake. I thought “Chocolate Spring” sounded more auspicious.
I played a bad-A$$ game of Skip-Bo with the fam.
Forty-two. The meaning of life achieved. Still hoping for more bad-a$$ trips around the sun.
Thursday, February 01, 2018
Good-ish
I was surprised and a little embarrassed to see that I have my every-other-week clinical trial checkup on Monday, meaning it has been almost two weeks since I had my first scans on this trial and I still haven’t written an update. Well, patient reader, in a nutshell my scans were good-ish. The lungs and body appear unchanged, and while there were no new spots on the brain, the New Guy (the brain met that was my ticket into the StarTrk-2 trial) looked mostly the same but a little bit rounder with some edema. Since we don’t know what happened during the agonizing 18 days that I was off all treatment, letting the cancer grow completely unfettered, the doc is calling it stable. And stable is good. The next scans will give us a better sense of how this drug will work on my cancer.
Guess when the next scans are - my birthday. I’m going to take that as a good omen.
I’m coping okay with the new drug, entrectinib. I had a whole laundry list of side effects to tell my trial doctor about:
- Sleep 12 hrs/night
- Numb/tingling mouth
- Feel slightly off balance
- Drugged feeling about 2 hours post dosage
- Scatterbrained, lose train of thought when interrupted
- Have to concentrate harder to follow conversations
- Very sensitive skin, prickly, pins and needles feeling
- Sometime struggle to find the right word
They designed this drug to get into the brain, and the side effects sure feel like it does!
The sensory stuff is either getting less or I am getting used to it. The main struggles now are the sleepiness (even after 12 hours of sleep!) and losing my train of thought if I get distracted. I’m developing coping mechanisms, like making lists, and using even more post-it notes than I did before so I have reminders everywhere. I am also teaching my children that they have to take turns when they want my attention instead of just all talking at once!
Do you see what is absent from the list of side effects? ANYTHING to do with GI issues!! I didn’t realize how miserable I was with my stomach issues on my old magic medicine Xalkori. I dreaded eating every day, and as a stay-at-home-mom, so much of my life centered around planning food, buying food, preparing food, and cleaning up food. We had more dinners of canned soup or takeout than I would like to admit, just because I couldn’t stand the look or smell of cooking food.
But now I LOVE TO EAT!! I look forward to eating! I love the smell of food! Food is wonderful!
Oh in other news, both of my daughters tested positive for Influenza A last week! We were totally floored when they were positive. They had some sniffles, a cough, and a slight fever and we took them in just because of me, since I am “high risk” and wanted to know what I was dealing with. I guess we were lucky that they got it so very mildly. I got to add Tamiflu to my drug cocktail which was a total blast. Thankfully I never caught the bug.
So, if you haven’t heard from me in a while, that’s what has been going on in my world. All in all, things are good
-ish.
Tuesday, February 28, 2017
The Best Bad News
I'm sure you have all been following my brain met saga with baited breath ;) so today I will bring you the latest MRI results, which are the best bad news.
The MRI literally says "no definitive disease progression" and yet I am planning to have more SRS, aka brain surgery without the cutting. In order to explain how that is not crazy, let me fill in the back story.
I have been taking crizotinib (Xalkori) for my ROS1+ lung cancer since November of 2013. It has been working amazingly well at controlling the cancer in my body, but it has the one big flaw that it doesn't work well in the brain. Therefore, I get regular brain MRIs to keep watch on that area. In September 2015, the first brain metastasis appeared.
In October of 2015 I had SRS for that small brain met, which was successful. (Yay!)
In May of 2016 I had SRS for a new small brain met, which was also successful. (Yay!)
In July of 2016 I had a follow up MRI which revealed two new, tiny (1-2 mm) spots. They were too small to treat just yet, so we decided to watch and wait.
I have been having brain MRIs every 2-3 months since then, and each time they have shown no growth. Upon getting the results for my most recent MRI, my wonderfully thorough radiation oncologist (who deserves the title of Rad Onc), decided to dig a little deeper into my stack of MRIs because, as he put it, "I don't trust anybody." He discovered that when you compare my most recent MRI to the earliest one where these questionable spots appeared, you can actually see some growth.
Then how did each scan show no growth, you wonder?
MRIs are very precise, but if the change between each is a fraction of a millimeter, you will not be able to see it. However, when you add up many fractions of a millimeter, you eventually get 2-3 mm growth. And that is exactly what he discovered when he compared the most recent to the first scan.
We decided it would be safest to do another round of SRS and take care of these mets now, rather than wait for them to grow any more and cause problems. They are still each barely 5 mm, but we don't want them to bring any friends.
So, the bad news is that I am going under the "knife" again, but the good news is that the growth is so very slow that it took some major searching to find it.
I go in for the mask fitting on Friday, and will have the SRS a week or so after that. I hope I can schedule it not to conflict with two adorable little girls turning 6, because that stuff is important!
Let me just say how weird it is that this is so normal to my family. I told the kiddos that some tiny cancer spots in my brain have grown a bit, so we are going to use that big machine to zap them again. My daughter ran over and got my old radiation mask and said, "Here Mama, you can use this again!" It's good that it doesn't bother them much, but it is a very strange thing to be so normal.
The MRI literally says "no definitive disease progression" and yet I am planning to have more SRS, aka brain surgery without the cutting. In order to explain how that is not crazy, let me fill in the back story.
I have been taking crizotinib (Xalkori) for my ROS1+ lung cancer since November of 2013. It has been working amazingly well at controlling the cancer in my body, but it has the one big flaw that it doesn't work well in the brain. Therefore, I get regular brain MRIs to keep watch on that area. In September 2015, the first brain metastasis appeared.
In October of 2015 I had SRS for that small brain met, which was successful. (Yay!)
In May of 2016 I had SRS for a new small brain met, which was also successful. (Yay!)
In July of 2016 I had a follow up MRI which revealed two new, tiny (1-2 mm) spots. They were too small to treat just yet, so we decided to watch and wait.
I have been having brain MRIs every 2-3 months since then, and each time they have shown no growth. Upon getting the results for my most recent MRI, my wonderfully thorough radiation oncologist (who deserves the title of Rad Onc), decided to dig a little deeper into my stack of MRIs because, as he put it, "I don't trust anybody." He discovered that when you compare my most recent MRI to the earliest one where these questionable spots appeared, you can actually see some growth.
Then how did each scan show no growth, you wonder?
MRIs are very precise, but if the change between each is a fraction of a millimeter, you will not be able to see it. However, when you add up many fractions of a millimeter, you eventually get 2-3 mm growth. And that is exactly what he discovered when he compared the most recent to the first scan.
We decided it would be safest to do another round of SRS and take care of these mets now, rather than wait for them to grow any more and cause problems. They are still each barely 5 mm, but we don't want them to bring any friends.
So, the bad news is that I am going under the "knife" again, but the good news is that the growth is so very slow that it took some major searching to find it.
I go in for the mask fitting on Friday, and will have the SRS a week or so after that. I hope I can schedule it not to conflict with two adorable little girls turning 6, because that stuff is important!
Let me just say how weird it is that this is so normal to my family. I told the kiddos that some tiny cancer spots in my brain have grown a bit, so we are going to use that big machine to zap them again. My daughter ran over and got my old radiation mask and said, "Here Mama, you can use this again!" It's good that it doesn't bother them much, but it is a very strange thing to be so normal.
Friday, May 06, 2016
Brain Surgery Light v2.0
Having been through the halo version of SRS (stereotactic radiosurgery) and the fancy new frameless "Edge" technology, I definitely prefer the latter. This time, they didn't need to numb my head (which didn't regain full sensation for about 3 months), or puncture four spots around my head to anchor the frame (leaving bruising and swelling, plus paralyzing one eyebrow for about a month).
Instead, I was fitted with this snug little mask which they clamped into the machine. There were also cameras around the room which projected motion-sensor beams, similar to the kind you see in spy movies. If I moved more that 0.5 mm, the beams would break and the treatment would stop. This is how they are able to target a brain met that is only 5mm while causing minimal damage to the surrounding brain tissue. Amazing.
The whole thing only took around an hour, which included getting into the machine, the treatment, and a quick check in with my doctor afterward.
The mask was much less invasive than the halo, though I found it incredibly tight fitting, almost to the point of me thinking that if the treatment lasted much longer I would need to speak up. I kept reminding myself that I went through unmedicated childbirth, I can handle this. After the procedure I told my doctor about the painfulness of the mask, and he said that he has had two people complain about it, me and a small child. It seems that those of us who don't have a lot of padding have to put up with it basically pressing on bone. Yay.
See the marks it left all over me? That thing was ridiculously tight.
I got to keep the mask, and my kiddos enjoyed playing with it. Each wanted a turn wearing it and lying very still as they pretended to have brain radiation. The other two would pretend to be the robot arm of the machine that delivered the "laser beams" and the other would make the zapping noises. I love how kids process tough situations in such a literal play-acting way.
Now I am dealing with all the awesome steroid side effects - and thankfully I only have to take them for a few days. Hats off to my friends who have to be on them long-term. They are no fun at all, but they keep the brain from swelling which is, ya know, pretty important. So I've got the body aches, flushed cheeks, weird sleep challenges despite being really tired, and the stomach feeling where I can't tell if I'm ravenous or nauseated.
The post-SRS effects are primarily a headache (though not nearly as bad as last time), and fatigue, like feeling really exhausted kind of fatigue.
I will have another MRI in two months as follow up, and the plan is to keep going on Xalkori as long as possible. It has already worked longer than average (1.5 years is the median for ROS1; I have been on it for 2.5 years). In the metastatic cancer world, if something is working you don't want to jump ship too fast. There are a finite number of things that can keep this in check. If the brain mets come at this slow pace, one at a time every 6 months or so, the rad onc feels that it is safest to just keep spot zapping them as needed. If the pace changes, then we will have to look at other options. So, I just keep chugging along.
But ya know? It's not easy. So here's the straight dope.
This is hard. Living with terminal cancer is really, really hard. I think my little family handles it mind-bogglingly well, but don't let our semi-together appearance fool you into thinking this is easy. We have been lucky to have stretches of time where we can let cancer sit on the back burner for a while, but it is always there, always waiting to bubble over and demand attention again.
This is hard. Living with terminal cancer is really, really hard. I think my little family handles it mind-bogglingly well, but don't let our semi-together appearance fool you into thinking this is easy. We have been lucky to have stretches of time where we can let cancer sit on the back burner for a while, but it is always there, always waiting to bubble over and demand attention again.
Things that are hard while recovering from "brain surgery light":
- 2 screaming 5 year olds
- telling your kids during bedtime stories that no, I will not go downstairs and get you a glass of water. If you really need one, go down and pour a glass yourself. And then hearing a scream and "Mommy! I spilled water everywhere!" And realizing it would have been much easier to just go downstairs in the first place, but lying down felt oh-so-nice.
- cleaning up a 5 year old's poop accident
- feeling guilty as I wonder how many 7 year olds are expected to do the washing up after dinner because mom doesn't feel well
- comforting a screaming 5 year old who had a wipe out getting out of the bathtub and hit her head
- jumping out of bed in the middle of the night because you hear "Mommy, I'm gonna throw up!" (Fortunately, she didn't.)
- explaining to your kids that a beloved teacher has just died of cancer. "But Mommy, YOU have cancer!"
- After thanking your eldest for always stepping up and handling things so well when Mommy isn't feeling good, to hear him say, "I remember before you had cancer, Momma" and hoping he really does remember.
So many of those things are just typical life with small children, which any parent will tell you is not easy on a good day. Throw a major illness in there, and it is just really really hard.
And while I have become very adept at managing the host of fun side effects that come with my daily cancer treatment (my purse looks like a walking pharmacy) and I can give myself shots without batting an eye, it is a daily trudge. We hear so much "rah-rah-rah! Beat that cancer" rhetoric out there, but the story is totally different for the metastatic bunch. There is no end to this. I will be in treatment forever, well, until I die or decide I've had enough. Don't get me wrong, I am immensely grateful to be alive, but it is a strange reality. I remember on a form I had to fill out at the hospital one time, that asked if I ever had suicidal thoughts, and I laughed out loud. I actively choose not to die every day when take my pills. Those of us on this metastatic path are just hoping for a few more weeks, months, dare we hope years of this uncertain life. (I know suicide is nothing to laugh at, and my heart aches for people dealing with mental illness, but the absurdity of that question in that moment struck me as funny.)
So this is hard. Really hard. And I'll reiterate what I thought last time I went through SRS, that whoever said SRS is a breeze clearly didn't have 4 year old twins. They are 5 now, and it still wasn't much easier. Don't get me wrong, I know that this was MUCH easier than having a craniotomy, that Xalkori is much easier than chemo, and that there are much harder things coming for me down the road. But it is still really freakin' hard.
So this is hard. Really hard. And I'll reiterate what I thought last time I went through SRS, that whoever said SRS is a breeze clearly didn't have 4 year old twins. They are 5 now, and it still wasn't much easier. Don't get me wrong, I know that this was MUCH easier than having a craniotomy, that Xalkori is much easier than chemo, and that there are much harder things coming for me down the road. But it is still really freakin' hard.
And yet, this is the path I am on, and I desperately hope to keep walking this path for a long, long time. So it goes.
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