Day 14: Dr Anne-Marie Baird, Lung Cancer Researcher and Advocate. “Lung cancer can affect anyone, anywhere.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015
 
Day 14: Dr Anne-Marie Baird, Lung Cancer Researcher and Advocate
“Lung cancer can affect anyone, anywhere.”
Twitter handle: @BairdAM

What is your connection with lung cancer?
Both my grandmother and aunt died from the disease. My aunt died while I was researching lung cancer at university.

What does your typical day look like?
I am usually in the lab or labland (as I call it) and am active on the Twitter feed #LCSM. Outside of the lab, I keep an eye out for dangerous Australian wildlife!

What is something we might not know about you? 
...continue reading...

Day 13: Diane Legg, survivor and advocate. “I turned her loss into advocacy.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 13: Diane Legg, survivor and advocate
“I turned her loss into advocacy.”

It was March of 2006. Dana Reeves had just died and I was reeling. As a young woman with lung cancer, I’d hitched my star to Dana’s, and her loss felt terribly personal. But then I happened to pick up a copy of the Newburyport Daily News. Inside was a story about a young mother of three with lung cancer; Diane Legg. I found her phone number online and called her that afternoon. We chatted a couple more times but our plans to have coffee somehow never materialized.
...continue reading...

Day 12: Karen Loss, survivor. “I am living with lung cancer, not dying from it.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 12: Karen Loss, survivor
“I am living with lung cancer, not dying from it.”
Twitter handle: @CancerTrek

What is your connection to lung cancer?

I will celebrate my 3rd anniversary since my lung cancer diagnosis on Thanksgiving this year. When I was originally diagnosed, I was already a nearly 16-year survivor of concurrent primary cancers of the uterus and ovaries. In January, I will celebrate my 19th anniversary after those diagnoses. I am currently undergoing my 3rd treatment regimen. First, I had a combination chemotherapy comprised of Taxol, Carboplatin and Avastin. That was followed for about 6 months by Avastin maintenance therapy. When progression began again, I was put on my second tier treatment of Taxotere. After that shrunk my tumors once more, I went off all cancer treatments and stayed off for about 15 months, though I still received CT scans every three months. The last three scans showed ongoing slow growth in both tumors, but especially in the one on my hepatic dome. The trend was undeniable, so my medical team and I felt it was time to resume treatment and with a few different potential alternatives to consider, I chose to try Opdivo/Nivolumab. I have now had four infusions of this drug and have not yet had my first CT scan since beginning this new therapy. That will happen in the week following Thanksgiving, and I am already looking forward to seeing what it will tell me. During these past three years, I have never reached NED status, but the treatments I have been given have shrunk my tumors, keeping things well in hand so far.
...continue reading...

Day 11: Kelly Shannon, Survivor. "We need to show the world who we are"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 11: Kelly Shannon, survivor
"We need to show the world who we are."

Nearly 4 years ago, Kelly Shannon was diagnosed with Stage 4 non-small cell adenocarcinoma with the KRAS mutation (more commonly associated with people who have smoked). Kelly was a 35 year old non-smoker when she was diagnosed in January 2012, and since then has endured numerous types of treatments from traditional chemo to 2 separate clinical trials. There aren't many options for someone with the KRAS mutation, as there are with and EGFR or ROS-1 mutations. She is now a 39 year old single mother raising two children, ages 5 and 7, while jumping from treatment to treatment in order to buy time for a KRAS treatment to come out.
...continue reading...

Day 10: Brendon Stiles, MD. "Even a diagnosis of advanced lung cancer is not a death sentence."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 10: Brendon Stiles, MD, Health Care Provider
"Even a diagnosis of advanced lung cancer is not a death sentence."
Twitter handle: @BrendonStilesMD

Who is Brendon Stiles? Tell us a little bit about yourself.

Ten years ago, I lost my father to lung cancer. After training at Memorial Sloan-Kettering Cancer Center and New York-Presbyterian Hospital, I am now an Associate Professor of Cardiothoracic Surgery at Weill Cornell Medicine, New York-Presbyterian Hospital. I operate on and care for patients with lung cancer. I have written extensively about lung cancer screening and the management of early lung cancer. I am also a basic science researcher, trying to characterize a new therapeutic target for lung cancer. I am on the Board of Directors and Medical Advisory Board of the Lung Cancer Research Foundation. In addition to being a surgeon and researcher, I consider myself to be a patient advocate.



What made you want to go into your line of work?

I love taking care of patients. In particular, I find that surgically resecting tumors from patients with early stage lung cancer and curing many of these patients is immensely satisfying. I enjoy the technical challenges and instant gratification of surgery.


Tell us about your father's experience with lung cancer.

My dad died from metastatic lung cancer 10 years ago. Five years prior to that he had entered a pilot program for CT screening for lung cancer, however the program was stopped early and he did not continue with annual screening CT scans. By the time he was diagnosed after a visit to the emergency room, his cancer had spread outside the chest. This was prior to targeted therapies and immunotherapy. Despite chemotherapy, my dad's disease progressed rapidly and he died just months after his diagnosis.


What do you want people to know about lung cancer?

Lung cancer can be cured if diagnosed at an early stage. Eligible patients should consider entering CT screening programs. Remarkable technical advances have been made in the surgical care of lung cancer which have made surgery safe and effective for early stage disease. People should also understand that even a diagnosis of advanced lung cancer is not a death sentence. Several new, targeted therapeutics have become available to lung cancer patients along with drugs that boost patients' own immune systems to fight cancer. It is critical for patients to seek out experienced centers for treatment and to consider mutation analysis of their tumors.


Where do you see lung cancer treatment going in the future?

I believe that instead of a "one size fits all" approach, we will continue to see progression towards individually tailored treatment regimens for each patient. Both surgical approaches and systemic therapy choices will be decided based upon improved imaging, staging, and molecular profiling of individual tumors.


Is there anything else you would like to share?

As well as remarkable treatment advances, we are at a "tipping point" for lung cancer awareness, advocacy, and research funding. The #LCSM movement is critical to all of that. It is incredibly rewarding to me to be a part of that. 

---

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

Yesterday's post was on Lysa Buonanno's blog, Faith, Family and Friends - Living with Stage IV Lung Cancer, where she profiled lung cancer survivor Andy Trahan.

Tomorrow’s post will be on Samantha Mixon's blog, Keeping my Faith - Living with Stage IV Lung Cancer, where she will profile lung cancer survivor Kelly Shannon.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

Day 9: Andy Trahan, survivor. "If you have lungs, you're at risk for lung cancer."

Lung Cancer Awareness Month 2015
Day 9: Andy Trahan, survivor
"If you have lungs, you're at risk for lung cancer."

A 35 year old father of 3, husband, and stage 4 lung cancer survivor. Diagnosed 2-14-13

Andy has been involved in advocacy by speaking to Representatives and Senators to share his story. Along with LCA he helped convince them to sign the bill for Low-Dose CT as a screening option. He and his wife, Leslie, also got a lung cancer specialty license plate in their state of Louisiana. He occasionally connects with other survivors that need support. His dad does a lot of research and connects with other survivors too and his sister created a Facebook page “Andy’s Team.” His brother has helped Andy with his work when he’s not up to doing it himself. Everyone has come together and has a role in the family to support Andy.

...continue reading...

Day 8: Jill Feldman, Lung Cancer Advocate and Warrior, in that order. "Nobody fights alone"

Lung Cancer Awareness Month 2015
Day 8: Jill Feldman, Lung Cancer Advocate and Warrior, in that order
"Nobody fights alone"

Jill Feldman, Lung Cancer Advocate and Warrior, (in that order.)

Who is Jill?
She is the 13-year-old granddaughter who lost two grandparents to lung cancer within weeks of each other. She is the daughter whose father died at 41 years old of lung cancer, nine months after her grandparents died. She is the daughter whose mother died at 54 years old of lung cancer. She is the niece whose aunt died at 56 years old of lung cancer. She is the former president of LUNGevity who was diagnosed with lung cancer, during her term, at age 39. She is a wife and mother of four teenagers ages 18, 17, 15, and 13 years. Jill has been a lung cancer warrior for 6+ years.

...continue reading...

Day 7: AnneMarie Ciccarella, "I got a bully cancer, no cancer is a good cancer"

Lung Cancer Awareness Month 2015
Day 7: AnneMarie Ciccarella
"I got a bully cancer, no cancer is a good cancer"
Twitter handle: @chemobrainfog

AnneMarie Ciccarella is a 58 year old passionate Lung Cancer advocate although she was diagnosed and treated with breast cancer, which she is currently NED.

Why is she so dedicated to lung cancer advocacy? 

 She lost her father to complications from treatment of this horrible disease on July 19, 2007. His body couldn't take the second round of chemotherapy. In addition to her father, she lost her grandfather when he was merely 55 to lung. These thoughts still bring tears to her eyes. Finally, she lost her high school love to lung cancer not too long ago. So three of the first men she loved were all taken too early by this disease.

...continue reading...

Day 6: Jessica Steinberg, survivor. “Cancer picked the wrong bitch!”

Lung Cancer Awareness Month 2015
Day 6: Jessica Steinberg, survivor
“Cancer picked the wrong bitch!”
Twitter handle: @chemosabemomma

If you are out and about in the Portland area you might encounter this dynamic woman on the Portland State University campus where she is working towards a second masters degree, this time in Social Work. If you happen to be just South of town, chances are good you’ll bump into her while in single parent mode. Parenting two boys, 10 and 13 (who’d most likely describe mom as embarrassing as she is juggling 16 items, 4 of which she forgot to write down and may likely be forgotten. If you are anything like me, you see Jessica at Knight Cancer Institute at Oregon Health and Science University where she checks in with her much liked Medical Oncologist while waiting for her next cycle of of her ALK+ cancer controlling targeted therapy pills. Alectinib, slated for FDA approval, has been successfully managing her cancer burden since February 2014.

...continue reading...

Day 5: Lysa Buonanno, patient. “Every day is a gift… even on my not so great days.”

Lung Cancer Awareness Month 2015
Day 5: Lysa Buonanno, patient.
“Every day is a gift… even on my not so great days.”

How are you connected with lung cancer?
I was diagnosed with Stage IV lung cancer four years ago. I have been through chemo, radiation, four surgeries, and now targeted drug therapy (my miracle pills).

...continue reading...

Day 4: Naomi Farley, Caregiver. “Hope is so important...”

Lung Cancer Awareness Month 2015
Day 4: Naomi Farley, Caregiver
“Hope is so important...”

Naomi’s connection with lung cancer:

I am my husband Corky’s caregiver. Corky was a coach running an after school athletic program when he was diagnosed with stage 4 adenocarcinoma. He has never smoked in his life. Our oncologist tested him right away for a genetic mutation, and found he has the EGFR mutation. Corky went on Tarceva as soon as we had his biopsy results. Tarceva was effective for 2 1/2 years until earlier in 2015 when he enrolled in the Clovis CO-1686 clinical trial. He is now in Cycle 10 of the Clovis trial (end of October 2015) and doing very well.

...continue reading...

Day 3: Bonnie Adario, “Lung Cancer patients are on my mind and in my heart every day”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 3: Bonnie Addario, Lung Cancer survivor and advocate extraordinare.
“Lung Cancer patients are on my mind and in my heart every day.”
Twitter handle:@bonniejaddario
 

Who are you? — I am a daughter, a wife, a Mother and a Grandmother who just happens to want to end lung cancer …

What is your connection to the LC community? — I am hoping that my connection to the LC Community is one of HOPE, LOVE and IMPACT.
...continue reading...

Day 2: Deana Hendrickson, advocate. "Smoker, former smoker, never smoker: no one deserves lung cancer. #NoStigma"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 2: Deana Hendrickson, Lung Cancer Advocate
Co-founder of #LCSM Chat (Lung Cancer Social Media) on Twitter
Twitter handle: @LungCancerFaces

What is her connection with lung cancer?

Deana’s mother, Rita Stein, was diagnosed with stage 3b lung cancer in June 2012. During Rita’s treatment (concurrent chemo and radiation for 6 weeks) Deana found herself spending a great deal of time in waiting rooms, infusion centers, and unfortunately, her mother’s hospital room. In order to pass the time, Deana began to post lung cancer awareness messages on Twitter, which led to “meeting” other advocates, patients, and physicians on social media. When Deana’s mother died in April 2013, she continued her advocacy, in part, to help her heal from the terrible ordeal of losing her NED (no evidence of disease) mother to treatment complications.

Deana helped found #LCSM Chat (Lung Cancer Social Media) on Twitter, and does whatever she can to raise money and awareness, mixed with a little bit of outrage, on behalf of lung cancer patients and their families. As Deana says, “My mom survived the Holocaust, living in a DP (refugee) camp for two years, and the death of my dad after 53 years of marriage. She never backed down from a challenge. In her honor and memory, neither will I.”

...continue reading...

Profiles in Lung Cancer - Day 1: Melissa Crouse, "So the chess match goes on."

Hey folks, it is November, which is Lung Cancer Awareness Month. In honor of this, a group of lung cancer bloggers will be interviewing people in the lung cancer community and profiling a patient, caregiver, advocate or health care provider each day. I will post them here for your enjoyment. I am excited to get to know more people who are impacted by this disease, and I hope you will join me on this ride.


PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 1: Melissa Crouse, Lung Cancer Patient and 10 year survivor.
"So the chess match goes on." 
Twitter handle: @mcrouse53


Who is Melissa Crouse? Tell us a little about yourself, outside of cancer. 

I am the mother of three grown children and a grandmother to two boys (ages 10 and 7) and a girl (age 2-1/2). I also just recently retired from teaching middle school orchestra and chorus………a job I loved and miss. I’ve always been very physically active. Skiing (snow), horseback riding, bike riding, working out and gardening were some of the activities I regularly enjoyed. I was a certified ski instructor when I lived in western Pennsylvania and taught skiing for about 15 years. Those were very happy and fulfilling times. I especially loved the night time chairlift rides when the sky was lit up with so many stars. Everything was hushed and calm. I also had two Tennessee Walking horses before I had children. I can still remember riding during crisp, cool fall days when the leaves of the trees were brilliant. I now live in Florida and enjoy all that this beautiful weather has to offer. The beach is close by which is an added bonus. I enjoy the beach and boating with my son-in-law and daughter on their boat. My children have all moved also, so I am blessed to have them all close by.


How did they find out your had lung cancer? What was that like? How did you feel?
 
My lung cancer was an accidental finding. I accepted a teaching job in Fort Myers, Florida 10 years ago which involved having to move from Pennsylvania. (Long story there.) I needed to have a routine physical as part of the hiring process, so I went to a walk in clinic to get it done. I developed an upper respiratory infection right around the time of orientation week for my new teaching position, so the doctor did a chest x-ray to rule out pneumonia and also for the TB test. The x-ray revealed a tumor in my left upper lobe. Because the radiologist knew my brother (who is a surgeon here in Fort Myers), he called my brother with his concerns. I was in the dark for a few days and it was my sister-in-law who finally answered my question of “I wonder what’s wrong with me?”. We were in her car at Bed Bath and Beyond when she turned to me and said “You have cancer”. I was shocked and speechless. I felt as if I was was falling in slow motion down an endless hole. When we met with the oncologist I asked him, “How can I have lung cancer? I never smoked”. Needless to say, I’ve learned a lot since then. Here I was, a relatively young, otherwise healthy woman who worked out regularly and took good care of herself. I was incredulous. Moving to Florida likely saved my life.


What sort of treatments have you had, and what were they like?

I had an an upper left lobe lung resection followed by the typical 6 cycle carboplatin-taxol regime and was NED for about 3 years. Then a follow-up scan showed “multiple and numerous” lesions (about 17) in my liver, so I became a stage 4 patient. I should say that I was originally diagnosed August of 2005 and my recurrence was discovered in Feb. 2009. I was put on a phase 2 clincal trial of Carboplatin, Ixempra and Avastin which knocked all of the cancer except one particularly large tumor away. I then had sterteotactic radiation therapy to that lesion along with a 6-cycle course of Alimta and Avastin. So, I’ve had numerous IV infusions of all types of agents including Alimta, Avastin, Taxol, Carboplatin in various combinations. Then, in Nov. 2009, I hooked up with a specialist at Mass Gen and am currently on my 4th clinical trial of a targeted therapy. Among the “tinibs” I’ve been on are Cabozantinib (a horrid, toxic, evil drug), Lenvantinib (almost as bad) and currently on Alectinib. Each “tinib” was a little less toxic as the one before. I just recently was taken off the Alectinib trial (a trial that was created just for me…a RET patient. It is already approved for ALK) The drug was working for me, but is affecting my bilirubin levels, so I was recently pulled from it and the plan is for me to go on Opdivo. Also, two years ago I underwent proton beam therapy at Mass Gen. which successfully zapped the 4-5 tumors that were still in my liver, but the nature of NSCLC is sneaky and persistent and it just keeps slowly creeping back. So the chess match goes on.


What is a typical day like for you, living with stage IV lung cancer?

Up until this year, a typical day involved going to work. I am still trying to adjust to not working which is hard for me. I stay busy helping out with my grandchildren. Picking them up from school, babysitting etc. I also spend a lot of time doing advocacy and mentoring other lung cancer patients. I also am a peer reviewer for the SRA and have been trying to establish a local lung cancer support group. A typical day involves getting up, having coffee, checking and responding to emails, reading, going to the beach if I feel up to it. The beach is great therapy!! Meeting friends for lunch and/or dinner and taking care of my two dogs. As a matter of fact, my response to this email was interrupted by a local newspaper photographer who came to take some pictures that will run along with an article(s) that are being planned for next month. I’ve already been interviewed. Our local paper is focusing on lung cancer in November!! Yay!!

What is something you want people to know about lung cancer?

I want people to know that ANYONE can get lung cancer. That it’s the number one cancer killer of women and that the funding is extremely disproportionate compared to other cancers.


What gives you hope?

My wonderful oncologist gives me hope. He’s always thinking ahead and always has a plan B, C and D in place. He also educates me about all the new research that is happening (much of it in his lab). He keeps me in the loop and thoroughly explains everything to me. My appointments with him are unhurried and he is caring and kind. He calls me and encourages me to call him anytime. I also refuse to quit. I’m very competitive and cancer will NOT get the upper hand!!! Period!!!




Is there anything else you would like to share?

I want to add that all three of my children have moved from Penna. to Fort Myers and now live and work near me. It’s such a blessing to have my family close by.


---

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

Tomorrow’s post will be on Janet Freeman-Daily's blog Gray Connections, where she will profile lung cancer advocate Deanna Hendrickson.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

Adventures in Brain Metastases

I am not new to the world of cancer. I survived childhood osteogenic sarcoma, and have been living with stage 4 non-small cell lung cancer for two and a half years. I have had my share of chemotherapy drugs (adriamycin, ifosfamide, methotrexate, carboplatin, Alimta, Avastin), I have had several radical surgeries to save my right arm, and I have been benefitting from a cutting edge targeted therapy. But, with all of these treatments, the one I have never experienced is radiation.

Until this past Monday, that is.

As I wrote about in "The Other Shoe," my regularly scheduled MRI showed that while the targeted medicine I take for my ROS1 mutation is doing a fabulous job controlling the cancer in my body, some sneaky cancer cells made it into my brain. So, on Monday, I had the super fun experience of stereotactic radiotherapy.

The morning started bright and early with a 7:00 a.m. check-in. I was told to take my Valium and Norco in the parking lot, so that they would start working by the time it came to put on my fancy head piece. You see, because the machine is precise to the millimeter, they need to hold the patient's head completely still. They achieve this by using this wonderfully attractive piece of hardware:





They numbed my scalp with lots of lidocaine and proceeded to clamp what my husband described as "skateboard hardware" onto my head. Seriously, it looks like stuff you would find in your basement workshop.



Next, they took me to have a CT of my head, with my fancy headgear clamped into the machine so that they could plan out exactly how my head would match up with their lasers.

By now, it was about 9:00 am. Frankly, the worst part of the whole experience for me is that I don't tolerate narcotics well at all. I know morphine makes me throw up, and I guess Norco is a close enough cousin to have a similar effect. By this time, I was feeling pretty green, but a dose of Zofran helped enormously. Then, I just had to wait around for several hours while they did all the planning for the actual treatment. I had packed the iPad and earphones, planning for my husband and I to watch movies while we waited, but alas, I didn't realize I wouldn't be able to wear my glasses with the headgear! Here is my attempt to balance them on the contraption. Total fail.





So, my amazing husband/caregiver Jason and I just sat around and chatted for a few hours. I got used to the headpiece fairly quickly, and it soon just felt like I was wearing a very heavy hat.



At noon, they had me take a dose of dexamethasone, a steroid to reduce any swelling from the radiation to my brain. The treatment was scheduled for 1:30 p.m., so at 1:00, they had me take another Valium and norco. By the time they wheeled me back for treatment, the duo was kicking in and I actually slept through the whole process. I remember them clamping my headpiece into the machine, and asking a few times how I was doing, but the next thing I knew they said, "OK, we are all finished!"

They removed the headpiece and sent me on my way. By now, the Norco-nausea was pretty bad and I promptly threw up upon getting home. Yay, narcotics. I slept most of the afternoon and evening. The next day, I felt groggy and had a pretty intense headache, but I decided to go the Tylenol route (no more Norco for me!) and that actually helped take the edge off quite a bit. By Wednesday, I was feeling much more like my old self, just a bit tired, and I still have patches of my scalp that are numb, which is a bizarre sensation.

I will have a follow-up MRI in January. Radiation keeps working for many weeks, so they won't know until then how it went. Fingers crossed that this is just a little bump in the road and I can keep going along with my targeted med Xalkori. I continue to marvel at modern medicine!




Originally published at: http://www.curetoday.com/community/tori-tomalia/2015/10/adventures-in-brain-metastases

Cancer On My Mind

Ha ha - I couldn't help myself.

My dedicated readers will recall from my last post, "The Other Shoe," that although Xalkori continues to be totally amazing at controlling the cancer in my body, it is not doing so hot in my brain. 

So, as I predicted, I have amped up my participation in the medical appointment world, and have seen a radiation oncologist, a neurosurgeon, corresponded with several lung cancer specialists, and had a high-definition MRI. Having cancer is definitely a part-time job. But on the upside, I now have a RAD onc!

Both the rad onc and the neurosurgeon expressed some skepticism about the two tiny spots that the MRI picked up, questioning if those were even brain mets at all (there was no question on the 9 mm one). The repeat MRI used 1-2mm slices rather than the standard 5 mm slices, so that they could get a very high definition picture of what was going on in my brain. The stereotactic radiosurgery (SRS) is highly precise, so they need to know details down to the millimeter.

The good news is that, as far as they can tell, the two tiny spot were not actually mets at all, so there is just one met to treat. Who would have thought I would be happy about being told I have one brain met? It's all about perspective. Maybe they should take this approach with all diagnostic testing.

My SRS is scheduled for Monday, October 26. They do the planning scan in the morning, then I hang out all day while they sit around and chat plan my "brain surgery" (that involves no cutting), then they do the procedure that afternoon. They said to expect to be pretty wiped out the next day, but I shouldn't experience any major side effects.

Oh, technology!

On the home front we have done some major rearranging of the rooms in our house. It is something we have discussed several times, but hearing that the cancer is on the move again pushed us to take the plunge. The kiddos now all share the largest room, an odd-shaped attic space that is actually a much better room for kids than it was for Jason and I. Parts of the room are too small for an adult to stand upright, and there are weird little nooks that were kind of wasted space for us. Now the kids have an art nook, and dress up corner, and a comfy reading spot. And they are still young enough to think it is cool to all share a room. Jason and I have one of the rooms downstairs now, and the other room is a guest room/study. Knowing that we have a space where grandparents can sleep when they help us out is a great comfort, and it helps ease the worry that we may be needing more help in the future.

AND I got to do something I've wanted to do since I was a kid. I always said if I ever owned a house I wanted to paint it. Not in the normal paint-a-wall way, but to just grab some paints and start decorating it. So, we all did just that and painted the stairwell leading up to what is now the kiddos' room. The kids have asked if we can do this every day, and there are still blank spots, so why not?

The Other Shoe

From the day I started chemo for my stage 4 lung cancer, I have had nothing but great results. The chemo started working immediately and my breathing improved noticeably after the very first treatment. Each scan showed shrinking (or at least stability) of my tumors and a PET scan even revealed that my targeted medicine Xalkori (crizotinib) had led to a complete metabolic response to treatment.

But everyone living with metastatic cancer knows that this is incurable. We all know that one day the treatment will stop working, one day the cancer will get smarter and find a way around the medicine.

I am on a fancy targeted therapy that has a great track record of controlling cancer in ROS1-positive folks like me. However, it is well known that Xalkori has one weakness, its Achilles' heel: It does not cross the blood-brain barrier. Any cancer cell that manages to slip into the brain can grow freely, unhindered by the medicine.

I bet you can guess where this is going.

My regularly scheduled brain MRI revealed three very small spots where the cancer has taken up residence in my brain. They are tiny and are not causing any symptoms. Thankfully we have been proactive and have been doing brain MRIs every six months to catch this early (if you are on Xalkori and not getting regular brain MRIs, push to get this done). The plan is to get stereotactic radiosurgery, a kind of pinpoint radiation that zaps the tiny metastases. It is brain surgery without the cutting and supposedly there are minimal side effects.

How do I feel about all this? I am strangely OK. I mean, it sucks really bad, but I have been so very terrified to get bad news that in some ways it wasn't quite as terrible as I imagined. After two years of amazing results, the other shoe finally dropped. What this means now is more appointments, more doctors to add to my team and another treatment notch in my belt. They say a criminal finally sleeps well the night he gets caught. Something I dreaded so much has happened, so I can't dread it anymore. Plus, there are still treatments, still reasons to have hope.

This isn't the end by any means. But it is a nasty reminder that the cancer is still there, still working against me, still threatening to take me away from everything I love.


Originally posted at: www.curetoday.com/community/tori-tomalia/2015/09/the-other-shoe

Small But Mighty: ROS1ers Unite!

The times are a-changin' in CancerLand. Gone are the days when you simply had breast cancer, lung cancer or leukemia. Now each has its own specific type and these days you can often discover what precise mutation is driving the cancer. As I discussed in my post "A Personal Take on Personalized Medicine," my cancer is driven by a mutation called ROS1.

In many ways, knowing this is a GREAT thing. When we found out what was driving my cancer, I was able to stop chemo and instead take a pill called Xalkori (crizotinib) that has been controlling my cancer for close to two years. That's fantastic! So what's the downside, you may ask?

Well, of the over 220,000 new cases of lung cancer each year, only about 1 percent of those have the ROS1 mutation. While being unusual may have a nice charm to it, from a research point of view, it is pretty crummy. Why would researchers focus their efforts on helping such a tiny fraction of people? Us ROS1ers lucked out by riding on the coattails of research for another mutation, ALK, and the drug that I take is actually only FDA-approved for ALK-positive lung cancer. There is no FDA-approved medication specifically for ROS1 lung cancer, it was just a happy coincidence that Xalkori works well for ROS1.

For the time being, this is not a problem. I will keep taking my off-label magic pills for as long as they work. But therein lies the problem — almost certainly, they will stop working someday. There are a few other drugs in trials for ALK that also look like they should work for ROS1, but at some point us ROS1ers have to stop tagging along with our cousin ALK and get some research focused on us.

And herein lies the opportunity. Because we now have the remarkable ability to sequence a person's tumor and discover the driving mutation, ROS1 mutations have also been discovered in colorectal cancer, glioblastoma and others. There are now revolutionary trials underway that are not for lung cancer or breast cancer or prostate cancer, but rather for specific mutations regardless of where they are in the body. Fascinating stuff!

It is true that us ROS1ers make up a tiny fraction of the lung cancer population, but when you add together all of the other ROS1-driven cancers out there, our numbers no longer look so puny. Together we make a group that is worth researching and worth saving. When patients unite, they become powerful activists. If you don’t believe me, read about how a group of lung cancer patients and caregivers petitioned to change the surgical guidelines for stage 4 — and they succeeded! (See "Empowered Patients Change National Cancer Guidelines")

So if any of you out there have a cancer driven by ROS1, please leave a comment below or find me on Facebook or Twitter. I would love to hear more about your treatment experiences and discuss how we can help each other.


Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/09/small-but-mighty-ros1ers-unite

A Monster Calls

 
I just finished an incredible young adult book. It is the kind of cancer book I would want to write if I ever write a cancer book. It has monsters and talking trees and tells the truth the way only fiction can. It is so very sad, and it gives me hope. Not the I-think-I-might-be-around-for-a-long-time kind of hope, but the scary, painful, they-will-still-be-okay kind of hope.

"Stories are important, the monster said. They can be more important than anything. If they carry the truth."

The illustrations are stunning, so here is a "book trailer" (I guess that's a thing now?) that gives an overview and shows some of the amazing artwork.




The book was written by Patrick Ness, but as he explains in the Author's Note, the story was conceived by Siobhan Dowd. "She had the characters, a premise, and a beginning. What she didn't have, unfortunately, was time." I'm sure you can guess what caused Ms. Dowd's death at age 47.


Zander saw me reading the book and asked me, "But I thought you didn't like to read scary books? I thought you said scary books and movies give you nightmares?"

What I said: "...Oh, I don't mind some scary books."

What I didn't say: "I already have nightmares about the stuff in this book. Reading it helps me deal with the fears."

To all my cancer pals out there with young children, give this book a read. Or don't. It is powerful and beautiful and very painful, but I'm so glad I read it. When my kids are older, I think they might want to read it, too.

The book is being made into a movie, to be released in October 2016. And my first thought was the same first thought I always have when I think of something scheduled for the future.

I hope I'm still here to see it.

7 Chemo Pro Tips

Thanks to my awesome targeted medicine, a pill that I take twice a day, it has been almost two years since I have been on IV chemo. While my scans still look great, my hemoglobin is low so I am having several weeks of iron infusions. I am so out of practice with IV medicine that I had forgotten all the hints I picked up during my time in the chair. I couldn't believe all the newbie mistakes I made, so I am writing down some tips here to help myself and you, my lovely readers.


1) Hydrate

Fluids, fluids, fluids. Drink as much as you can the night before and the morning of your infusion. This will make it easier to find a vein for the IV, and it will help to flush the chemo out. I was kicking myself that I forgot about this when I went in for my infusion. After the third failed attempt at starting an IV I realized that the half-glass of apple juice I had had that morning just wasn’t going to cut it.


2) Pass the Salt

This goes along with no. 1, but I would always have a salty dinner the night before chemo to help keep me nice and thirsty. (Note – I have low blood pressure naturally, so salt is my pal. If you have blood pressure issues, go easy with this.)


3) Get Hot

I mean this is the most literal sense. I used to wear long sleeves and a sweater, and would sometimes even leave my coat on in the waiting area to keep my body temperature up. This helped my veins to dilate, and become nice and visible to the people starting the IV.


4) Distractions

I foolishly showed up for my 10 a.m. infusion with nothing to occupy my time, thinking I would be in and out quickly. HA! When they finally started the IV an hour and a half later, my phone battery was just about gone and I was left twiddling my thumbs for the next hour or so. When I was going through chemo, I would always bring a tablet, headphones, and a charger and would settle in for a nice movie festival during the long wait and infusion. My husband and I would turn it into a bizarre date night. Hey, you gotta make your fun where you can.


5) Snacks

Infusion days tend to be very long, so pack a couple of easy-to-eat snacks. I find that an empty stomach is an upset stomach, so keep something in your belly to stay ahead of the hunger. Many cancer centers also have a snack room, so have a poke around there and see what takes your fancy.


6) Germs

Your doctor should be able to predict how many days after your infusion your immune system will weaken. I managed to go through four months of chemo with a kindergartener and two toddlers in the house without getting sick. It is possible! During my low white blood cell count days, I would wash my hands very frequently (some might say obsessively), and I would avoid touching my face. I never realized how often I would scratch my nose or rub my eyes until my physician's assistant explained that this is how most viruses get passed between people. Try it, you will be amazed how often you touch your face in a day.


7) Meds

Chemo is notorious for causing a whole host of side effects; some of the most common are nausea, diarrhea and constipation. Talk to your doctor about these possibilities before your infusion so you can have the medications on hand when the side effects hit.

Now it's your turn. What tips have you learned from your time in the chair?


Originally posted at www.curetoday.com/community/tori-tomalia/2015/07/7-chemo-pro-tips