I had scans following two cycles of chemo and it seems that the medicine is working its magic. The cancer has been knocked back in my lungs and my heart, the new stuff that showed up in my abdomen in July is gone, and sclerotic bone mets have appeared, which indicates that they were hiding out but are now dying. (I guess I also had some broken ribs?!? Who knew.) Much to my surprise, even my brain MRI showed improvement, with mets and edema showing reduction. Whew!
Cancer is a thief that steals by inches and by miles. Sometimes stealing pennies, sometimes pearls.
For the past few months it’s has stolen my breath. It’s startling to look back on how frail I was just a few weeks ago. Jason had to push me in a wheelchair for my first chemo, since I was too weak and short of breath to get there under my own steam. During that time, I couldn’t walk more than a few steps.
And now, thanks to chemo, I can walk again. I can yawn again. I can hold my breath. I can (mostly) take a deep breath.
I still have a very long way to go, but I can feel my lungs slowly getting stronger.
My balance issues have remained, meaning it wasn’t the trial drug causing those. They are likely the result of brain surgery and several bouts of radiation. Which also means there may not be a ton of improvement there, even with effective cancer treatment. Wobbliness may just be part of me now.
Cancer has stolen my gracefulness. It has stolen my handwriting. It took my naïveté years ago.
But chemo has given me back my breath, so I willingly continue my cantankerous partnership with this prickly friend.
I can go for a walk again. I can cook a meal again. I can take my kids to the park again.
I am slowly clawing my way back.
Showing posts with label brain metastasis. Show all posts
Showing posts with label brain metastasis. Show all posts
Sunday, October 04, 2020
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.
Friday, May 17, 2019
Out, Damned Spot!
Clearly this cancer likes to keep me on my toes.
You may recall that I finally got some good news on my April brain scan, the first good news in a year or more. My May scan focused on my heart and bones. The heart looks just fine (yay!) but a spot appeared in my left shoulder blade.
Just when you think you can breathe easy for a bit.
It is a spot that was seen back in 2013, but that we thought was dead for all these years. I guess it wasn’t, or it is some sort of zombie cancer that is rearing its ugly head.
And I thought the pains in my shoulder were a pulled muscle from all my travel and camping fun!
The good news is that I can stay in the trial, and we are treating this spot like a single mutant clone and zapping it with targeted radiation. And I can do the radiation here in Michigan. All good things.
So on Monday I start three every-other-days of radiation. Not my first rodeo, as the nurse said, though my first time where I have to be aware of possible skin damage.
I’m going to assume the rads will take care of this Damned Spot, and that my newest magic drug will keep shrinking the cancer in my brain. May as well believe that until I hear otherwise.
You may recall that I finally got some good news on my April brain scan, the first good news in a year or more. My May scan focused on my heart and bones. The heart looks just fine (yay!) but a spot appeared in my left shoulder blade.
Just when you think you can breathe easy for a bit.
It is a spot that was seen back in 2013, but that we thought was dead for all these years. I guess it wasn’t, or it is some sort of zombie cancer that is rearing its ugly head.
And I thought the pains in my shoulder were a pulled muscle from all my travel and camping fun!
The good news is that I can stay in the trial, and we are treating this spot like a single mutant clone and zapping it with targeted radiation. And I can do the radiation here in Michigan. All good things.
So on Monday I start three every-other-days of radiation. Not my first rodeo, as the nurse said, though my first time where I have to be aware of possible skin damage.
I’m going to assume the rads will take care of this Damned Spot, and that my newest magic drug will keep shrinking the cancer in my brain. May as well believe that until I hear otherwise.
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!
Saturday, April 06, 2019
Catching Lightning
These past two months of treatment on my fancy new clinical trial drug have passed fairly uneventfully. Side effects here and there, plus massive amounts of travel, but all in all not too much to report. Mostly, I’ve just been trying to convince myself that everything must be fine, since I feel fairly decent.
But now scan day, April 8th (our 13th wedding anniversary) keeps marching closer, and no matter how hard I dig in my heels and try to make the world stop turning, the calendar pages continue to flip. Time for me to step up and face the truth that the scan report reveals.
The gravity of these upcoming scans reminds me of my August 2013 scans (on Jason’s birthday). Those were my first scans after starting chemo, and we knew that the report would largely foretell whether or not my cancer would respond to treatment. And the report was remarkable.
But that was my first line of treatment. I am on my ... fifth (or maybe sixth?) line at this point. The odds of a good outcome go down with each one, meaning I am now deep into the unenviable category of the “heavily pretreated” patient.
But, I’ll try not to think about the outcome until I have to.
For now, I’ll keep savoring all the little joyous occasions ... trying to hold on to these ephemeral moments that slip through my fingers like sand.
But now scan day, April 8th (our 13th wedding anniversary) keeps marching closer, and no matter how hard I dig in my heels and try to make the world stop turning, the calendar pages continue to flip. Time for me to step up and face the truth that the scan report reveals.
The gravity of these upcoming scans reminds me of my August 2013 scans (on Jason’s birthday). Those were my first scans after starting chemo, and we knew that the report would largely foretell whether or not my cancer would respond to treatment. And the report was remarkable.
But that was my first line of treatment. I am on my ... fifth (or maybe sixth?) line at this point. The odds of a good outcome go down with each one, meaning I am now deep into the unenviable category of the “heavily pretreated” patient.
But, I’ll try not to think about the outcome until I have to.
For now, I’ll keep savoring all the little joyous occasions ... trying to hold on to these ephemeral moments that slip through my fingers like sand.
Saturday, February 16, 2019
Clinical Trial Lifestyle
I successfully passed all the tests and got accepted into the study! There is a weird sweet spot you have to hit in order to qualify for a clinical trial. If you don't have enough cancer in your body, you will not qualify because you do not have "measurable disease." If you have too much, you will be too unwell to be considered as a candidate. I hit the goldilocks level of cancer! Yay for having measurable disease?!? What a strange thing to wish for.
I took the first dose on Thursday and now I just hope (and hope and hope) that it works.
I got to see both of the Wizards on my trip to Oz (my ruby slippers were a hit), and as usual they impressed me with their intelligence and compassion. They both have the remarkable ability to treat a patient as an equal partner in their care, something I have rarely found elsewhere. I love that they take the time to explain the science behind the treatments. I asked what I could do if this doesn’t work, and he explained that a chemo/immunotherapy combo (carboplatin, pemetrexed, and pembrolizumab) would be the next step. While most drugs need to physically reach the cancer (a challenge with brain mets), immunotherapy just has to stimulate the body. Well, here’s hoping I don’t have to find out for a while.
So now I set about trying to figure out the logistics of my new life, as an out of state clinical trial patient. With appointments once per week for the first two months, this is going to get complicated.
I have contacted several foundations to help shoulder the cost of all of this travel.
Here is a summary of what I have found (hopefully this will help someone else going through this). All of the folks I have spoken to in these organizations have been incredibly kind and helpful, even the ones that didn’t work out for me.
Air Charity Network
https://aircharitynetwork.org/request-a-flight/
This is a collective of independent pilots who will fly patients for treatment.
They need at least 7 days to arrange the flight.
Challenge: small planes can only fly about 250 miles, making longer trips (like mine) impossible.
Lifeline Pilots
https://lifelinepilots.org/
Independent pilots.
Challenge: same as above
Corporate Angels Network
http://www.corpangelnetwork.org/
This organization works with corporations to let patients fly along on their private planes for free.
Challenge: apparently no one is flying between Detroit and Denver for business.
Mercy Medical Angles
https://mercymedical.org/
They work with commercial airlines to give unsold seats to patients traveling for healthcare. They will provide a maximum of 3 flights per year, with at most 1 flight per month.
Challenge: they require a ton of paperwork (of the “prove you are poor enough” variety), and need at least 21 days advance notice. I am in the process of completing this.
Lazarex Cancer Foundation
https://www.lazarex.org/
Their focus is on helping patients overcome the financial burdens involved in joining a clinical trial. Exciting that they say they even help with the other costs, like hotels and taxis to and from the appointments.
Challenge: not sure yet, still in the process of completing paperwork.
In the mean time, I have had a few wonderful people reach out to help with flights. Emily Bennett Taylor, stage IV lung cancer survivor, offered to buy me a plane ticket to Colorado. (If you have never read her story, you should. It is amazing. https://embenkickscancer.wordpress.com/) She said that a lot of people helped her during her treatments, and she wanted to pass along the kindness.
And then! The awesome person and excellent musician Zoe Keating gave me some of her miles to help with flights. Zoe and I became friends when her husband was going through treatment for stage IV lung cancer. He has since passed away. Cruel disease, this is.
I’ve met some of the most amazing people because of this horrible diagnosis. It’s the club no one wants to join, as they say.
I took the first dose on Thursday and now I just hope (and hope and hope) that it works.
I got to see both of the Wizards on my trip to Oz (my ruby slippers were a hit), and as usual they impressed me with their intelligence and compassion. They both have the remarkable ability to treat a patient as an equal partner in their care, something I have rarely found elsewhere. I love that they take the time to explain the science behind the treatments. I asked what I could do if this doesn’t work, and he explained that a chemo/immunotherapy combo (carboplatin, pemetrexed, and pembrolizumab) would be the next step. While most drugs need to physically reach the cancer (a challenge with brain mets), immunotherapy just has to stimulate the body. Well, here’s hoping I don’t have to find out for a while.
So now I set about trying to figure out the logistics of my new life, as an out of state clinical trial patient. With appointments once per week for the first two months, this is going to get complicated.
I have contacted several foundations to help shoulder the cost of all of this travel.
Here is a summary of what I have found (hopefully this will help someone else going through this). All of the folks I have spoken to in these organizations have been incredibly kind and helpful, even the ones that didn’t work out for me.
Air Charity Network
https://aircharitynetwork.org/request-a-flight/
This is a collective of independent pilots who will fly patients for treatment.
They need at least 7 days to arrange the flight.
Challenge: small planes can only fly about 250 miles, making longer trips (like mine) impossible.
Lifeline Pilots
https://lifelinepilots.org/
Independent pilots.
Challenge: same as above
Corporate Angels Network
http://www.corpangelnetwork.org/
This organization works with corporations to let patients fly along on their private planes for free.
Challenge: apparently no one is flying between Detroit and Denver for business.
Mercy Medical Angles
https://mercymedical.org/
They work with commercial airlines to give unsold seats to patients traveling for healthcare. They will provide a maximum of 3 flights per year, with at most 1 flight per month.
Challenge: they require a ton of paperwork (of the “prove you are poor enough” variety), and need at least 21 days advance notice. I am in the process of completing this.
Lazarex Cancer Foundation
https://www.lazarex.org/
Their focus is on helping patients overcome the financial burdens involved in joining a clinical trial. Exciting that they say they even help with the other costs, like hotels and taxis to and from the appointments.
Challenge: not sure yet, still in the process of completing paperwork.
In the mean time, I have had a few wonderful people reach out to help with flights. Emily Bennett Taylor, stage IV lung cancer survivor, offered to buy me a plane ticket to Colorado. (If you have never read her story, you should. It is amazing. https://embenkickscancer.wordpress.com/) She said that a lot of people helped her during her treatments, and she wanted to pass along the kindness.
And then! The awesome person and excellent musician Zoe Keating gave me some of her miles to help with flights. Zoe and I became friends when her husband was going through treatment for stage IV lung cancer. He has since passed away. Cruel disease, this is.
I’ve met some of the most amazing people because of this horrible diagnosis. It’s the club no one wants to join, as they say.
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.
Wednesday, December 19, 2018
California Dreamin’
Jason and I got married in a perfect, tiny ceremony on the beach in San Clemente, California, then honeymooned in nearby San Diego. On each anniversary, we show our kids the wedding video, and every year they ask if they could see where we got married.
Our little crew has never been on a family vacation. Yes, we road trip to Minnesota every summer to see my parents, and while I find that wonderfully relaxing, it’s not really a family vacation.
There is an improv festival coming up in San Diego, and the League of Pointless Improvisers (the Pointless cast) got accepted to perform in it.
...do you see where I am going with this?
These past few months have been rough. Frankly, these past 5.5 years have been hard, but the last few months have been particularly challenging. And the road forward remains unclear.
So we decided, come hell or high water, we are going to California!
Jason pointed out to me that Disneyland and LEGOLAND are in California, too. I’m well aware what a challenging time this has been for Jason and I, but I’d be a fool if I didn’t recognize how hard this has been on the kiddos, too. They deserve some fun.
—
I spent today anxiously waiting for my MRI results, the first MRI after 6 weeks on my fancy new TKI drug, Lorlatinib. It is my third TKI, and I’d be lying if I said I wasn’t getting nervous that I’m on #3 of the 4 that have been developed for ROS1 (and #4 is only up to phase 1 in clinical trials). I called the cancer center and left a message, saying I was waiting for results. They said they would call me back when my doctor was available.
So 2 hours later I called again (I am bad at waiting), and they said they know I called, and they will call me back.
An hour later I just about jumped out of my skin when my phone rang. It was a nurse saying that my doctor would call me tonight, after he finished in clinic. That sounded terribly ominous, and I was shaking so much I felt like I could barely stand.
Finally, tonight, my doctor called.
Frustratingly, we are back in the vague land of “slight enhancements”. My doctor feels (and I agree) that it is too soon to make a call whether or not this drug is working for me, especially with such vague results, so I am staying on the drug and we are rescanning in 4 weeks. Back on the emotional rollercoaster. This is exhausting.
But we are going to California, dammit! A week to forget about all of this and just be together! Fun, family memories, and adventures await!
Our little crew has never been on a family vacation. Yes, we road trip to Minnesota every summer to see my parents, and while I find that wonderfully relaxing, it’s not really a family vacation.
There is an improv festival coming up in San Diego, and the League of Pointless Improvisers (the Pointless cast) got accepted to perform in it.
...do you see where I am going with this?
These past few months have been rough. Frankly, these past 5.5 years have been hard, but the last few months have been particularly challenging. And the road forward remains unclear.
So we decided, come hell or high water, we are going to California!
Jason pointed out to me that Disneyland and LEGOLAND are in California, too. I’m well aware what a challenging time this has been for Jason and I, but I’d be a fool if I didn’t recognize how hard this has been on the kiddos, too. They deserve some fun.
—
I spent today anxiously waiting for my MRI results, the first MRI after 6 weeks on my fancy new TKI drug, Lorlatinib. It is my third TKI, and I’d be lying if I said I wasn’t getting nervous that I’m on #3 of the 4 that have been developed for ROS1 (and #4 is only up to phase 1 in clinical trials). I called the cancer center and left a message, saying I was waiting for results. They said they would call me back when my doctor was available.
So 2 hours later I called again (I am bad at waiting), and they said they know I called, and they will call me back.
An hour later I just about jumped out of my skin when my phone rang. It was a nurse saying that my doctor would call me tonight, after he finished in clinic. That sounded terribly ominous, and I was shaking so much I felt like I could barely stand.
Finally, tonight, my doctor called.
Frustratingly, we are back in the vague land of “slight enhancements”. My doctor feels (and I agree) that it is too soon to make a call whether or not this drug is working for me, especially with such vague results, so I am staying on the drug and we are rescanning in 4 weeks. Back on the emotional rollercoaster. This is exhausting.
But we are going to California, dammit! A week to forget about all of this and just be together! Fun, family memories, and adventures await!
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! |
Monday, May 14, 2018
Good enough
Thankfully my scans were much less of a roller coaster this time around. The consensus was that the brain mets are probably stable, so I can stay on the trial drug. Not quite as nice as a glowing report, but good enough. I'll take it, and I greatly appreciate that there was no drama.
Boring is just fine, thank you very much.
As the trial doc said, let's just try to keep stringing together months at a time until we hopefully get to a year. I know that's the drill for this metastatic life; just keep kicking the can down the road, going one step at a time, and before you know it (and if you are immensely lucky) you realize 5 years is just around the corner.
So let's just keep kicking!
As the trial doc said, let's just try to keep stringing together months at a time until we hopefully get to a year. I know that's the drill for this metastatic life; just keep kicking the can down the road, going one step at a time, and before you know it (and if you are immensely lucky) you realize 5 years is just around the corner.
So let's just keep kicking!
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.
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