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Rower Michelle

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  1. Like
    Rower Michelle got a reaction from Vince T in Newly diagnosed with ALK mutation   
    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? 
  2. Like
    Rower Michelle got a reaction from RonH in Alectinib and brain functions   
    Hi Michael, 
    I was diagnosed with ALK nearly five years ago now at Stage IV; have been on Alectinib for 52 months with clear scans.  The brain fog and memory issues are very familiar. They are a common reported side effect for many of us.   I have a few ideas depending on what's available at your center: 
    1. Ask for a palliative care referral; it's a misperception that palliative care is for end of life.  Today palliative care teams are trained to assess and treat side effects.  Oncologists really only treat the cancer; not the side effects.   Sometimes a short course of Ritalin/Adderal might help.   
    2. Some of the larger cancer centers have post treatment cognitive rehabilitation programs to reduce brain fog and improve memory.  That might be worth checking into. 
    3. You might want to check into seeing a board certified physician in Integrative Medicine for Functional Medicine.  Here is an article on how to locate one: 
    https://www.drweil.com/health-wellness/balanced-living/healthy-living/seeking-an-integrative-medicine-physician/  I had some pesky lingering side effects that the palliative care doc and the integrative care doc couldn't figure out.  So I persisted and found a functional MD who actually did finally get to the bottom of it all.   It's important to find a board certified MD as there are a lot of quacks out there.
    4. Finally, you might want to consider acupuncture with a licensed Chinese medicine practitioner (not the kind you find at a chiropractor's office).   It's expensive but sometimes covered by insurance.  In my opinion, it's been pretty helpful. 
    If you haven't already found the ALK Community, they have pages on Facebook and a website at www.alkpositive.org 
    Hopefully some of this will be helpful for you to consider.  Don't give up... keep talking to your doctors. 
    Michelle 
     
  3. Like
    Rower Michelle got a reaction from LouT in neuropathic foot pain with Tagrisso ?   
    Hello- I’m sure someone on Tagrisso will weigh in here..  I’m on a different targeted therapy and had success with Cymbalta 60mg, originally marketed for depression, turns out it’s far more effective for neuropathic pain.    Others take Claritin, the allergy medicine.  Oncologists aren’t great about side effect management so you may want to inquire if there’s a palliative care doc on staff- or ask the oncology pharmacist for guidance.   No need to tolerate the pain when there’s a solution out there… I also do acupuncture, it’s expensive but effective.  
    Michelle
  4. Like
    Rower Michelle got a reaction from Tom Galli in neuropathic foot pain with Tagrisso ?   
    Hello- I’m sure someone on Tagrisso will weigh in here..  I’m on a different targeted therapy and had success with Cymbalta 60mg, originally marketed for depression, turns out it’s far more effective for neuropathic pain.    Others take Claritin, the allergy medicine.  Oncologists aren’t great about side effect management so you may want to inquire if there’s a palliative care doc on staff- or ask the oncology pharmacist for guidance.   No need to tolerate the pain when there’s a solution out there… I also do acupuncture, it’s expensive but effective.  
    Michelle
  5. Like
    Rower Michelle got a reaction from Tom Galli in Mom in Hospital with Pneumonia/Stage IV NSCLC   
    Hi, I’m from Bloomfield NJ,  have been taking Alecensa for ALK positive lung cancer for 4 1/2 years.  While pneumonia may be a potential side effect, it is very good for quick symptom resolution.   There are other options in the same drug class and I would recommend a second opinion right away.  Where is Mom treated now? There are great options available, don’t lose hope. 
    Michelle
  6. Like
    Rower Michelle got a reaction from LouT in Mom in Hospital with Pneumonia/Stage IV NSCLC   
    Hi, I’m from Bloomfield NJ,  have been taking Alecensa for ALK positive lung cancer for 4 1/2 years.  While pneumonia may be a potential side effect, it is very good for quick symptom resolution.   There are other options in the same drug class and I would recommend a second opinion right away.  Where is Mom treated now? There are great options available, don’t lose hope. 
    Michelle
  7. Like
    Rower Michelle got a reaction from BridgetO in Oncologist   
    Hello Katz,
    I am coming up soon to the five year mark of the stage IV diagnosis.  I am treated at the University of Kansas Cancer in Kansas.
    Long term survivorship with lung cancer is possible with the treatment advances that have become the standard of care at National Cancer Institutes located around the country.  I’d recommend contacting the Lungevity helpline and look at the following website for a location nearby: 
    https://www.cancer.gov/research/infrastructure/cancer-centers/find
    Keep us posted- 
    Michelle
  8. Like
    Rower Michelle reacted to Katz in Oncologist   
    Thank you!!!! 
    we are headed to The James in Columbus Monday. 
  9. Like
    Rower Michelle got a reaction from JHP in Oncologist   
    Hello Katz,
    I am coming up soon to the five year mark of the stage IV diagnosis.  I am treated at the University of Kansas Cancer in Kansas.
    Long term survivorship with lung cancer is possible with the treatment advances that have become the standard of care at National Cancer Institutes located around the country.  I’d recommend contacting the Lungevity helpline and look at the following website for a location nearby: 
    https://www.cancer.gov/research/infrastructure/cancer-centers/find
    Keep us posted- 
    Michelle
  10. Like
    Rower Michelle got a reaction from LouT in Oncologist   
    Hello Katz,
    I am coming up soon to the five year mark of the stage IV diagnosis.  I am treated at the University of Kansas Cancer in Kansas.
    Long term survivorship with lung cancer is possible with the treatment advances that have become the standard of care at National Cancer Institutes located around the country.  I’d recommend contacting the Lungevity helpline and look at the following website for a location nearby: 
    https://www.cancer.gov/research/infrastructure/cancer-centers/find
    Keep us posted- 
    Michelle
  11. Like
    Rower Michelle got a reaction from Tom Galli in Oncologist   
    Hello Katz,
    I am coming up soon to the five year mark of the stage IV diagnosis.  I am treated at the University of Kansas Cancer in Kansas.
    Long term survivorship with lung cancer is possible with the treatment advances that have become the standard of care at National Cancer Institutes located around the country.  I’d recommend contacting the Lungevity helpline and look at the following website for a location nearby: 
    https://www.cancer.gov/research/infrastructure/cancer-centers/find
    Keep us posted- 
    Michelle
  12. Like
    Rower Michelle reacted to Ariharry in Tagrisso Weight Loss   
    Michelle, thanks for the recommendation, I'll tell my grandfather. I will try to keep track of his nutrition
  13. Like
    Rower Michelle got a reaction from BridgetO in Alectinib and brain functions   
    Hi Michael, 
    I was diagnosed with ALK nearly five years ago now at Stage IV; have been on Alectinib for 52 months with clear scans.  The brain fog and memory issues are very familiar. They are a common reported side effect for many of us.   I have a few ideas depending on what's available at your center: 
    1. Ask for a palliative care referral; it's a misperception that palliative care is for end of life.  Today palliative care teams are trained to assess and treat side effects.  Oncologists really only treat the cancer; not the side effects.   Sometimes a short course of Ritalin/Adderal might help.   
    2. Some of the larger cancer centers have post treatment cognitive rehabilitation programs to reduce brain fog and improve memory.  That might be worth checking into. 
    3. You might want to check into seeing a board certified physician in Integrative Medicine for Functional Medicine.  Here is an article on how to locate one: 
    https://www.drweil.com/health-wellness/balanced-living/healthy-living/seeking-an-integrative-medicine-physician/  I had some pesky lingering side effects that the palliative care doc and the integrative care doc couldn't figure out.  So I persisted and found a functional MD who actually did finally get to the bottom of it all.   It's important to find a board certified MD as there are a lot of quacks out there.
    4. Finally, you might want to consider acupuncture with a licensed Chinese medicine practitioner (not the kind you find at a chiropractor's office).   It's expensive but sometimes covered by insurance.  In my opinion, it's been pretty helpful. 
    If you haven't already found the ALK Community, they have pages on Facebook and a website at www.alkpositive.org 
    Hopefully some of this will be helpful for you to consider.  Don't give up... keep talking to your doctors. 
    Michelle 
     
  14. Like
    Rower Michelle got a reaction from Tom Galli in Alectinib and brain functions   
    Hi Michael, 
    I was diagnosed with ALK nearly five years ago now at Stage IV; have been on Alectinib for 52 months with clear scans.  The brain fog and memory issues are very familiar. They are a common reported side effect for many of us.   I have a few ideas depending on what's available at your center: 
    1. Ask for a palliative care referral; it's a misperception that palliative care is for end of life.  Today palliative care teams are trained to assess and treat side effects.  Oncologists really only treat the cancer; not the side effects.   Sometimes a short course of Ritalin/Adderal might help.   
    2. Some of the larger cancer centers have post treatment cognitive rehabilitation programs to reduce brain fog and improve memory.  That might be worth checking into. 
    3. You might want to check into seeing a board certified physician in Integrative Medicine for Functional Medicine.  Here is an article on how to locate one: 
    https://www.drweil.com/health-wellness/balanced-living/healthy-living/seeking-an-integrative-medicine-physician/  I had some pesky lingering side effects that the palliative care doc and the integrative care doc couldn't figure out.  So I persisted and found a functional MD who actually did finally get to the bottom of it all.   It's important to find a board certified MD as there are a lot of quacks out there.
    4. Finally, you might want to consider acupuncture with a licensed Chinese medicine practitioner (not the kind you find at a chiropractor's office).   It's expensive but sometimes covered by insurance.  In my opinion, it's been pretty helpful. 
    If you haven't already found the ALK Community, they have pages on Facebook and a website at www.alkpositive.org 
    Hopefully some of this will be helpful for you to consider.  Don't give up... keep talking to your doctors. 
    Michelle 
     
  15. Like
    Rower Michelle got a reaction from LouT in Dad's Stage IV NSCLC (updates)   
    I’m really sorry to hear this update and wanted to let you know if the TILs trial is closed there is another lesser known trial led by Michael Caliguiri MD at 
    https://www.cytoimmune.com/about-us/
    it might be worth a phone call… 
  16. Like
    Rower Michelle reacted to jack14 in Pet Scan Results and Treatment Plan   
    Update: I have received nine tri-weekly infusions (paxel / Carbo), and my scan results have revealed no evidence of disease! I am now on a monthly physical exam. My Oncologist says that I could remain clear for months or years.
    My prayers are for all of us to beat this horrific disease.
  17. Like
    Rower Michelle got a reaction from Tom Galli in Dad's Stage IV NSCLC (updates)   
    I’m really sorry to hear this update and wanted to let you know if the TILs trial is closed there is another lesser known trial led by Michael Caliguiri MD at 
    https://www.cytoimmune.com/about-us/
    it might be worth a phone call… 
  18. Like
    Rower Michelle got a reaction from Justin1970 in Biopsy results….   
    You might want to start here:
    https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer/squamous-cell-lung-cancer
     
    It is rare for squamous cell to have a biomarker, it’s typically not done & insurance may not pay for it however it’s worth asking the oncologist about.   
  19. Like
    Rower Michelle got a reaction from lovingdaughter1990 in Biopsy results….   
    You might want to start here:
    https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer/squamous-cell-lung-cancer
     
    It is rare for squamous cell to have a biomarker, it’s typically not done & insurance may not pay for it however it’s worth asking the oncologist about.   
  20. Like
    Rower Michelle got a reaction from LouT in Biopsy results….   
    You might want to start here:
    https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer/squamous-cell-lung-cancer
     
    It is rare for squamous cell to have a biomarker, it’s typically not done & insurance may not pay for it however it’s worth asking the oncologist about.   
  21. Like
    Rower Michelle got a reaction from Tom Galli in Biopsy results….   
    You might want to start here:
    https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer/squamous-cell-lung-cancer
     
    It is rare for squamous cell to have a biomarker, it’s typically not done & insurance may not pay for it however it’s worth asking the oncologist about.   
  22. Like
    Rower Michelle got a reaction from Justin1970 in NED!   
    Fabulous news, indeed!! 
  23. Like
    Rower Michelle got a reaction from LouT in NED!   
    Fabulous news, indeed!! 
  24. Like
    Rower Michelle got a reaction from catlady91 in I'm also still stable!   
    Wow, wow, wow!! Not one but two cancers slayed!  Awesome news!  A great start to the New Year!  
  25. Thanks
    Rower Michelle got a reaction from LilyMir in NED!   
    Fabulous news, indeed!! 
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