Rower Michelle

Hey Deb,
You’ve been on my mind!  Wanted to share one of our group members has had five rounds of SBRT over a four year period.  Dr Camidge calls this “spot welding”.  The only issue she had was some nausea so you might want to ask about being pre-treated.

I would also be inquiring about Proton Radiation which is available at Mayo & KU which is far more precise and less invasive. 
I always admire your grace and determination.   Let me know how we can all help. 
 
Michelle 

You may also want to look into the cookbook by Rebecca Katz, The Cancer Fighting Kitchen which is designed for managing the side effects associated with chemo.  I found the recipes pretty tasty and the chemo tricks while counter intuitive actually worked.  

A belated hello from me.  Kevin it sounds like you’re doing all that you can and obtaining a second opinion at Moffit is a good idea.  You may not be aware there is a patient advocacy organization dedicated to MET called “The Met Crusaders”.  You can find them on Facebook and Twitter.  It’s an excellent resource for real time peer support.   
Michelle

A belated hello from me.  Kevin it sounds like you’re doing all that you can and obtaining a second opinion at Moffit is a good idea.  You may not be aware there is a patient advocacy organization dedicated to MET called “The Met Crusaders”.  You can find them on Facebook and Twitter.  It’s an excellent resource for real time peer support.   
Michelle

You may also want to look into the cookbook by Rebecca Katz, The Cancer Fighting Kitchen which is designed for managing the side effects associated with chemo.  I found the recipes pretty tasty and the chemo tricks while counter intuitive actually worked.  

You may also want to look into the cookbook by Rebecca Katz, The Cancer Fighting Kitchen which is designed for managing the side effects associated with chemo.  I found the recipes pretty tasty and the chemo tricks while counter intuitive actually worked.  

I’m so sorry you’re on this horrible roller coaster ride.  The circumstances were very similar at the time of my stage IV diagnosis.  In order to stop the rapid clinical decline my oncologist opted to give me one round of a chemo/immunotherapy cocktail while we waited for the biomarker testing. That decision probably saved my life. Nowadays a chemo combo of Carboplatin and Altimpta would be administered without the immunotherapy.  That was four years ago and I’m still going on the first line of targeted therapy.  Hang in there and keep asking questions…. We’re here for you. 

I’m so sorry you’re on this horrible roller coaster ride.  The circumstances were very similar at the time of my stage IV diagnosis.  In order to stop the rapid clinical decline my oncologist opted to give me one round of a chemo/immunotherapy cocktail while we waited for the biomarker testing. That decision probably saved my life. Nowadays a chemo combo of Carboplatin and Altimpta would be administered without the immunotherapy.  That was four years ago and I’m still going on the first line of targeted therapy.  Hang in there and keep asking questions…. We’re here for you. 

I’m so sorry you’re on this horrible roller coaster ride.  The circumstances were very similar at the time of my stage IV diagnosis.  In order to stop the rapid clinical decline my oncologist opted to give me one round of a chemo/immunotherapy cocktail while we waited for the biomarker testing. That decision probably saved my life. Nowadays a chemo combo of Carboplatin and Altimpta would be administered without the immunotherapy.  That was four years ago and I’m still going on the first line of targeted therapy.  Hang in there and keep asking questions…. We’re here for you. 

Hi Lizzie,
We’ve all been there.  Although it might sound odd, you’re one of the fortunate people who had a physician that made an accurate diagnosis.  Many of my friends were in physical therapy for months (and in some cases over a year) before their lung cancer was finally diagnosed.  
 
There are many different types of adenocarcinomas- treatment is tailored to what Tom pointed out- the biomarker.   It’s not unusual for women under 60 to have one. 
 
It’s important to remember that diagnosis is not prognosis, I received a stage IV diagnosis three years ago and I’m in remission (no evidence of disease).  
 
In the beginning we all feel like the Twilight Zone, brighter days are coming so hold onto your hope. 
Michelle

I’m so sorry you’re on this horrible roller coaster ride.  The circumstances were very similar at the time of my stage IV diagnosis.  In order to stop the rapid clinical decline my oncologist opted to give me one round of a chemo/immunotherapy cocktail while we waited for the biomarker testing. That decision probably saved my life. Nowadays a chemo combo of Carboplatin and Altimpta would be administered without the immunotherapy.  That was four years ago and I’m still going on the first line of targeted therapy.  Hang in there and keep asking questions…. We’re here for you. 

Hello Paul,
I’m sorry I somehow missed your post. Like Ron, I have the ALK Mutation too.  The initial biomarker testing missed the ALK-fortunately my oncologist had two other patients with ALK and sent my biopsy for comprehensive biomarker testing at Foundation Medicine.  Who knew there was four tests for ALK?   Anyway I’ve been on Alectinib for three and a half years now. 
 
In addition to the ALK FB page, there will be an in person conference in Denver.  I went in 2019 when it was in Atlanta and made many lasting friendships.  
 
The fact you have a low PDL actually is good news as emerging research indicates that patients with a PDL 1 under 50% have a longer response on targeted therapy. 
 
I’m sorry you’ve had to go through all of this but now you’re on a good path! 
@RonH are you coming to Denver? 

Hi Paul,
If you haven't already discovered it, there a very active Facebook group "ALK Positive" with thousands of members worldwide that we all have one thing in common, the ALK mutation. Lots and lots of experience and very knowledgeable people in the group. I myself was diagnosed 3A 4 years ago, and my ALK+ mutation found 2.5 years ago. I've been on Alectinib (2nd generation inhibitor) for the past 2.5 years with very good results so far. Best of luck. (The Facebook group is private and only open to the ALK patients and their support partners (spouses, children, etc). - Ron

I’m so sorry you’re on this horrible roller coaster ride.  The circumstances were very similar at the time of my stage IV diagnosis.  In order to stop the rapid clinical decline my oncologist opted to give me one round of a chemo/immunotherapy cocktail while we waited for the biomarker testing. That decision probably saved my life. Nowadays a chemo combo of Carboplatin and Altimpta would be administered without the immunotherapy.  That was four years ago and I’m still going on the first line of targeted therapy.  Hang in there and keep asking questions…. We’re here for you. 

That is how we are feeling. The doctor honestly wasn't pushing it. I think as a cancer center they just make it an option to anyone who falls within the studies parameters. The phase 2 trial out of Japan had slightly positive results for people who were smokers but otherwise didn't seem to show much improvement and obviously, there are adverse side effects that come up with a handful of patients. Just didn't want to foreclose any option that could be good. 
 

Hi Emily,
Personally, I wouldn’t want my parents taking two lung cancer drugs in their 70s.  Avastin is not a easy chemo on anyone, even younger people.  Your mom can have an excellent quality of life on Tagrisso for years.  In my support group there are two 70+ people on Tag for almost four years now with their disease well controlled with minimal side effects.   I’m very surprised the medical team would even consider such a trial unless they believe exon 21 would be less responsive to Tag alone.  It seems like an unnecessary risk to put an elderly person through.  

Hi Emily,
Personally, I wouldn’t want my parents taking two lung cancer drugs in their 70s.  Avastin is not a easy chemo on anyone, even younger people.  Your mom can have an excellent quality of life on Tagrisso for years.  In my support group there are two 70+ people on Tag for almost four years now with their disease well controlled with minimal side effects.   I’m very surprised the medical team would even consider such a trial unless they believe exon 21 would be less responsive to Tag alone.  It seems like an unnecessary risk to put an elderly person through.  

Hi Ale,
So nice to hear from you and we all share the disappointment when the treatment isn’t doing the job.  You’re smart in going to Penn, where clinical trials and experimental therapies are available. A friend of mine here has HER-2 Exon 20.  The Enhurtu worked for a bit and now she’s on her fifth line of treatment, doing the LiveStrong program with us at the local YMCA and still working. Her doctors keep coming up with new combos.  So as Lou says, hang onto your Hope.  
 

Hi Ale,
So nice to hear from you and we all share the disappointment when the treatment isn’t doing the job.  You’re smart in going to Penn, where clinical trials and experimental therapies are available. A friend of mine here has HER-2 Exon 20.  The Enhurtu worked for a bit and now she’s on her fifth line of treatment, doing the LiveStrong program with us at the local YMCA and still working. Her doctors keep coming up with new combos.  So as Lou says, hang onto your Hope.  
 

Hi Steph,
I’m very sorry to hear this news.  We know your Mom well here, as a frequent contributor & occasional Zoomer.  There comes a time when hospice becomes the brave choice.  We will pray for your family during this very difficult time.   
Michelle

Hi Lizzie,
We’ve all been there.  Although it might sound odd, you’re one of the fortunate people who had a physician that made an accurate diagnosis.  Many of my friends were in physical therapy for months (and in some cases over a year) before their lung cancer was finally diagnosed.  
 
There are many different types of adenocarcinomas- treatment is tailored to what Tom pointed out- the biomarker.   It’s not unusual for women under 60 to have one. 
 
It’s important to remember that diagnosis is not prognosis, I received a stage IV diagnosis three years ago and I’m in remission (no evidence of disease).  
 
In the beginning we all feel like the Twilight Zone, brighter days are coming so hold onto your hope. 
Michelle

Hi Steph, 
Your mom was one of the first people I met shortly after my diagnosis in this forum.  She always seemed to be on-line, ready to jump in with wisdom and words of encouragement.  We'll also remember her passionate to the legal profession and of course her love of Mayor Pete.... she will always be remembered for the contribution she made...   my deepest condolences to your family. 
Michelle 

Yes, we do know how you feel right now!  That’s great news!!! After the next few scans you will get to NED.   Deep breath, carry on. 

Hi Steph,
I’m very sorry to hear this news.  We know your Mom well here, as a frequent contributor & occasional Zoomer.  There comes a time when hospice becomes the brave choice.  We will pray for your family during this very difficult time.   
Michelle

Hi Steph,
I’m very sorry to hear this news.  We know your Mom well here, as a frequent contributor & occasional Zoomer.  There comes a time when hospice becomes the brave choice.  We will pray for your family during this very difficult time.   
Michelle