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Rower Michelle

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  1. Like
    Rower Michelle got a reaction from Sandy N in NSCLC 22years old   
    Ale, 
    That's great news, it sounds like you are starting to turn the corner.  You might want to check out Andrew Weill MD's Anti-inflammatory Diet.   Some of my friends who have had radiation have found it helpful.  I've been following for a few years and feel my energy levels are better.  Unfortunately, it's as you suspect, lots of vegetables, so the "fun" foods aren't on the list.   But in this battle you need every weapon at your disposal: 
    https://www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/dr-weils-anti-inflammatory-diet/
     
     
  2. Like
    Rower Michelle reacted to AleHondaa in NSCLC 22years old   
    Hey all, 
    I feel as I need to vent a lil bit. The closer I get to chemo day, the more scared I get. I don’t know what to feel or believe in. I’m so worried that it isn’t gonna work, I know I can’t have that mindset but it’s always crossing my mind. I know I’m young and it’s definitely helped out with the other treatments but I feel so out of it.. 
    Other news, the side effects from radiation are slowly going away but it sure is hell. I can barely speak without some sort of mucus buildup and I’m always spitting stuff out it’s annoying. It still hurts to eat but definitely not like before. I’m so over this, dealing with the brace on my neck is way better then the pain of not being able to eat and drink things. Part of the reason why I’m feeling so off lately.
    Im glad to see that there’s some advancements in the mutation they found, I’ll pay close attention to it, perhaps there’s a silver lining coming soon. Thanks for the [email protected] Michelle
     
    Thank you ❤️
  3. Like
    Rower Michelle got a reaction from AleHondaa in NSCLC 22years old   
    Hi Ale,
    Just saw the American Lung Association is having a virtual patient meet up on May 11th.  One of the break out sessions is dedicated to advances in HER2 lung cancer.  Thought you might want to check it out. 
  4. Like
    Rower Michelle got a reaction from Judy M2 in NSCLC 22years old   
    Hi Ale,
    Just saw the American Lung Association is having a virtual patient meet up on May 11th.  One of the break out sessions is dedicated to advances in HER2 lung cancer.  Thought you might want to check it out. 
  5. Like
    Rower Michelle got a reaction from TJM in Dealing with Insurance Denials   
    Hi Steff, 
    The exact same situation occurred with one of my ALK Positive peers!  Since Medicare is a federal program, managing the appeals process was almost pointless.  My friend had to file complaints with both her Senators, Congressional Rep, and finally the State Attorney General.   In the end it was the AG office that contacted someone in Washington DC that got the approval for the dosage increase.   A few of the other ALKs with private insurance had the same problem when their ALK inhibitor (targeted therapy) was prescribed at above the recommended dose.  It was a major hassle that the insurance company denied, ultimately their State AG was able to resolve it pretty quickly and successfully. 
    Good luck- start hitting the phones tomorrow morning. 
    Michelle 
  6. Like
    Rower Michelle got a reaction from Lisa Haines in NSCLC 22years old   
    Ale- 
    People beat the odds, every day.  With each year, there's more treatments available for lung cancer.  Early on in my diagnosis my doctor suggested I read this essay: 
    https://journalofethics.ama-assn.org/article/median-isnt-message/2013-01
    I found this really helpful in understanding that there is a lot of hope on the horizon.   Right now, it's a day by day process, as soon as the treatment plan gets established, you will begin to feel a little more settled.  
    Michelle 
     
     
     
  7. Like
    Rower Michelle reacted to Steff in Dealing with Insurance Denials   
    Thank you all -
    I contacted the drug manufacturer yesterday.  They have 2 programs to help pay for the drug, 1 she doesn't qualify for, the other is a process but at least I got it started.  We have an appointment with her oncologist on Tuesday and I warned the oncologist that I expect for her to make time during this appointment to discuss further options.  It's hard with my mom's chemo brain to get exactly what was said by her docs.  But I plan to get to the bottom of it Tuesday!!  I am keeping my fingers crossed that the drug company offers her financial assistance and I don't need to battle Medicare!  I will let you all know what I come up with.  Thanks again!
  8. Like
    Rower Michelle reacted to Judy M2 in Neratinib and EGFR Exon 18   
    This article was posted by a member of the LUNGevity EGFR Resisters Lung Cancer Patients Group. Not only is neratinib being tested as a targeted therapy for EGFR Exon 18 mutations but also HER and HER2 tumor mutations and for other cancers. Go science! 
    https://www.targetedonc.com/view/neratinib-is-effective-against-egfr-exon-18-mutations-in-nsclc
  9. Like
    Rower Michelle got a reaction from Tom Galli in Dealing with Insurance Denials   
    Hi Steff, 
    The exact same situation occurred with one of my ALK Positive peers!  Since Medicare is a federal program, managing the appeals process was almost pointless.  My friend had to file complaints with both her Senators, Congressional Rep, and finally the State Attorney General.   In the end it was the AG office that contacted someone in Washington DC that got the approval for the dosage increase.   A few of the other ALKs with private insurance had the same problem when their ALK inhibitor (targeted therapy) was prescribed at above the recommended dose.  It was a major hassle that the insurance company denied, ultimately their State AG was able to resolve it pretty quickly and successfully. 
    Good luck- start hitting the phones tomorrow morning. 
    Michelle 
  10. Like
    Rower Michelle got a reaction from AngelL in Second opinion??   
    A second opinion actually saved my life.  Initially there was limited biomarker testing done for only the most "common" mutations.  All of the typical tests turned up with nothing, until I received a second opinion, a comprehensive biomarker panel was completed where it was discovered I did actually have a targetable mutation.   Second opinions are really not a good description. I think of it along the lines of an expert consultation.  With all the scientific advances in lung cancer, it's almost impossible for a general medical oncologist to keep track of the emerging therapies.   In the event I have any clinical changes, my doctor has already identified who he wants me to consult with for the treatment plan development.   We all understand the urgency to start treatment, however, finding the best treatment plan through experts is the most efficient path forward.   Some of my friends even obtained a third opinion... even though it took a few weeks, they received the best care and years later continue to be doing very well. 
  11. Like
    Rower Michelle got a reaction from GramaA in Supplements to avoid while on chemo?   
    Just want to echo Bridget's sage advice- I also take a number of supplements, all of them were reviewed and approved by the pharmacist.  (The oncologist generally will say don't take any supplements).   
    Memorial Sloan Kettering maintains a database of common supplements that you can check for yourself in advance of the appointment: 
    https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs
    Best of luck to you as you get this show on the road! 
  12. Like
    Rower Michelle got a reaction from LexieCat in Dealing with Insurance Denials   
    Hi Steff, 
    The exact same situation occurred with one of my ALK Positive peers!  Since Medicare is a federal program, managing the appeals process was almost pointless.  My friend had to file complaints with both her Senators, Congressional Rep, and finally the State Attorney General.   In the end it was the AG office that contacted someone in Washington DC that got the approval for the dosage increase.   A few of the other ALKs with private insurance had the same problem when their ALK inhibitor (targeted therapy) was prescribed at above the recommended dose.  It was a major hassle that the insurance company denied, ultimately their State AG was able to resolve it pretty quickly and successfully. 
    Good luck- start hitting the phones tomorrow morning. 
    Michelle 
  13. Like
    Rower Michelle got a reaction from BridgetO in Supplements to avoid while on chemo?   
    Just want to echo Bridget's sage advice- I also take a number of supplements, all of them were reviewed and approved by the pharmacist.  (The oncologist generally will say don't take any supplements).   
    Memorial Sloan Kettering maintains a database of common supplements that you can check for yourself in advance of the appointment: 
    https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs
    Best of luck to you as you get this show on the road! 
  14. Like
    Rower Michelle got a reaction from AleHondaa in NSCLC 22years old   
    Ale, 
    That's great news, it sounds like you are starting to turn the corner.  You might want to check out Andrew Weill MD's Anti-inflammatory Diet.   Some of my friends who have had radiation have found it helpful.  I've been following for a few years and feel my energy levels are better.  Unfortunately, it's as you suspect, lots of vegetables, so the "fun" foods aren't on the list.   But in this battle you need every weapon at your disposal: 
    https://www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/dr-weils-anti-inflammatory-diet/
     
     
  15. Like
    Rower Michelle got a reaction from BridgetO in Dealing with Insurance Denials   
    Hi Steff, 
    The exact same situation occurred with one of my ALK Positive peers!  Since Medicare is a federal program, managing the appeals process was almost pointless.  My friend had to file complaints with both her Senators, Congressional Rep, and finally the State Attorney General.   In the end it was the AG office that contacted someone in Washington DC that got the approval for the dosage increase.   A few of the other ALKs with private insurance had the same problem when their ALK inhibitor (targeted therapy) was prescribed at above the recommended dose.  It was a major hassle that the insurance company denied, ultimately their State AG was able to resolve it pretty quickly and successfully. 
    Good luck- start hitting the phones tomorrow morning. 
    Michelle 
  16. Like
    Rower Michelle got a reaction from jack14 in MET   
    For the MET Crusaders-
    You might want to check out Dr Levy’s remarks from this week’s GO2FOUNDATION  Living Room.  He talks about the direction of targeted therapies & blood biopsies 
     
  17. Like
    Rower Michelle got a reaction from Sandy N in NSCLC 22years old   
    Ale- 
    People beat the odds, every day.  With each year, there's more treatments available for lung cancer.  Early on in my diagnosis my doctor suggested I read this essay: 
    https://journalofethics.ama-assn.org/article/median-isnt-message/2013-01
    I found this really helpful in understanding that there is a lot of hope on the horizon.   Right now, it's a day by day process, as soon as the treatment plan gets established, you will begin to feel a little more settled.  
    Michelle 
     
     
     
  18. Like
    Rower Michelle got a reaction from LouT in NED is NED.   
    We are celebrating right along with ya bro! 
  19. Like
    Rower Michelle got a reaction from Judy M2 in NSCLC 22years old   
    Ale- 
    People beat the odds, every day.  With each year, there's more treatments available for lung cancer.  Early on in my diagnosis my doctor suggested I read this essay: 
    https://journalofethics.ama-assn.org/article/median-isnt-message/2013-01
    I found this really helpful in understanding that there is a lot of hope on the horizon.   Right now, it's a day by day process, as soon as the treatment plan gets established, you will begin to feel a little more settled.  
    Michelle 
     
     
     
  20. Like
    Rower Michelle got a reaction from LouT in Second opinion??   
    A second opinion actually saved my life.  Initially there was limited biomarker testing done for only the most "common" mutations.  All of the typical tests turned up with nothing, until I received a second opinion, a comprehensive biomarker panel was completed where it was discovered I did actually have a targetable mutation.   Second opinions are really not a good description. I think of it along the lines of an expert consultation.  With all the scientific advances in lung cancer, it's almost impossible for a general medical oncologist to keep track of the emerging therapies.   In the event I have any clinical changes, my doctor has already identified who he wants me to consult with for the treatment plan development.   We all understand the urgency to start treatment, however, finding the best treatment plan through experts is the most efficient path forward.   Some of my friends even obtained a third opinion... even though it took a few weeks, they received the best care and years later continue to be doing very well. 
  21. Like
    Rower Michelle got a reaction from LouT in Wife's 2nd covid shot.   
    Every five years a booster shot for Shingles.... gosh that sounds crazy.  I'm not sure I'd want to do that again.... couldn't get off the couch for two days.   
  22. Like
    Rower Michelle got a reaction from LouT in Wife's 2nd covid shot.   
    Sitting in the chair post Pfizer shot 2 right now- with 8 minutes to go!   
     
    The Shingles shots were super ugh!  
  23. Like
    Rower Michelle got a reaction from LouT in NSCLC 22years old   
    Ale- 
    People beat the odds, every day.  With each year, there's more treatments available for lung cancer.  Early on in my diagnosis my doctor suggested I read this essay: 
    https://journalofethics.ama-assn.org/article/median-isnt-message/2013-01
    I found this really helpful in understanding that there is a lot of hope on the horizon.   Right now, it's a day by day process, as soon as the treatment plan gets established, you will begin to feel a little more settled.  
    Michelle 
     
     
     
  24. Like
    Rower Michelle got a reaction from Robert A. in Wife's 2nd covid shot.   
    Sitting in the chair post Pfizer shot 2 right now- with 8 minutes to go!   
     
    The Shingles shots were super ugh!  
  25. Like
    Rower Michelle got a reaction from Judy M2 in Second opinion??   
    A second opinion actually saved my life.  Initially there was limited biomarker testing done for only the most "common" mutations.  All of the typical tests turned up with nothing, until I received a second opinion, a comprehensive biomarker panel was completed where it was discovered I did actually have a targetable mutation.   Second opinions are really not a good description. I think of it along the lines of an expert consultation.  With all the scientific advances in lung cancer, it's almost impossible for a general medical oncologist to keep track of the emerging therapies.   In the event I have any clinical changes, my doctor has already identified who he wants me to consult with for the treatment plan development.   We all understand the urgency to start treatment, however, finding the best treatment plan through experts is the most efficient path forward.   Some of my friends even obtained a third opinion... even though it took a few weeks, they received the best care and years later continue to be doing very well. 
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