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Rower Michelle

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Posts posted by Rower Michelle

  1. 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

  2. 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

  3. 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

  4. 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 

     

  5. Hey All, 

    Wanted to wish you a Happy Thanksgiving!  I had my scans this week and 49 months on targeted therapy, all continue to looks good.  We had an uncharacteristic visit with the oncologist.  He was the most optimistic we've ever seen him, the ALK data is demonstrating both in the US and Europe that first line Alectinib (without brain mets) is having a pretty long ride.  Doc said at this point while anything can happen, the likelihood of getting a seven year run on therapy is a realistic possibility.   I'm pretty realistic about this disease four years in; I've seen the whole spectrum so anything goes.  In the meanwhile, I will keep doing what I'm doing. Stay hopeful and just keep going!

    Michelle 

  6. Wise advise- to see if you can get the biomarker testing done... in a lot of cases, the organization doing the testing will either give a steep self pay discount or eat the cost of the test entirely.  My insurance company denied comprehensive biomarker testing (for stage IV!!).   It was a stressful time but in the end I didn't pay a dime.  Each of the companies that do biomarker testing has a consumer advocate to help with this situation.  

    The reason the insurance denied the comprehensive testing is that I had a "Limited Panel" which showed had no targets.   The comprehensive testing was more refined and did find an ALK mutation.  So in my case it was life saving.  To this day I'm still baffled by the denial. 

    In the end, it's the oncologist who has the final say.  I'm beginning to lose track of how many times the radiologist didn't have it quite right.   

  7. Hi, Just wanted to chime in on this thread.   I was also a licensed clinical social worker at the time of my diagnosis; the cancer center assigned an Onco-psychologist to me as part of my comprehensive team.  I remember being a little surprised as the psychologist was sooooo young.... I was wondering how this was going to all work.  Every time I saw him I couldn't get the word, "child doctor" out of my head.  Now that we've been together for four years, I think we both have found a groove that works if anything I can say certain things out loud that I would never say to my healthy friends... I find it helpful to have those types of discussions.  On occasion the youngster does come up with a few gems that make doing the mental work worthwhile for the long haul. 

  8. Hi Annie,

    Welcome here. I would suggest getting a second opinion as soon as possible. While it’s rare for SCC to have biomarkers it can occur.  Chemo/Radiation is the standard of care AND so is at least one year of immunotherapy.  To suggest otherwise contradicts the NCCN guidelines which establishes the treatment plans for all cancers including lung.  Lung cancers in the never smoker population are complicated and really need an expert opinion.   
    Personally you’re not far from John Heymach MD at MD Anderson’s and I would suggest you reach out to the Go2Foundation and Lungevity Help Lines to line up a second and perhaps a third opinion.   Getting the treatment plan right out of the gate is really important.  Keep us posted…. We’re here to help!

    Michelle

     

     

     

  9. The insurance company!!! We all know too well.  The only course is to fight back.  First off your doctor can file an appeal and if your insurance is employer based then you will need a file a complaint with Human Resources.   Most of the time when HR gets involved the insurance company backs down.  If all else fails then file a complaint with the State Department of Insurance.  The treatment combo proposed is totally reasonable.  
     

    If by any chance your insurance company uses a vendor called EviCore, we call it EvilCore and complaining on social mediapart of the wall of shame also works. It shouldn’t have to be this hard but sometimes is.  Generally it all works itself out so try not to stress too much about it   

     

  10. Hi,

    Although I live in KS, I was born & raised in North Jersey.  (Exit 150).   My stage IV diagnosis came as a complete shock as I had no known risk factors and was very ill by the time we finally got it all sorted out.  That was four years ago, I’ve been in remission most of that time after the ALK mutation was discovered.  
    I had a similar chemo regiment- Carboplatin, Pemetrexed & Keytruda.  I had one round that showed the lung tumor shrinking but the lesion on my spine increased. I was also allergic to the chemo- in addition it triggered a all things maple allergy.  Fortunately the biomarker test came in just before round 2 of chemo.  The second opinion physician sent biomarker testing that was pretty sophisticated because the first round totally missed the ALK mutation.  
     

    Do you know what mutation you have? Obtaining a second opinion is a great idea as that MSK location patients have reported mixed satisfaction and many end up at UPenn or Fox Chase.  
     

    Lung Cancer is very sophisticated and going to a big name cancer center isn’t always the best choice, many physicians specialize in mutations.  You might want to consider contacting the Go2Foundation to learn about The Lung Match Program.  
     

    I’m so sorry you find yourself here- there are a number of young mothers you can also learn from at www.thewhiteribbonproject.com.   For reasons unknown young women are being diagnosed with lung cancer- some are in their 20s.   Google around for the story of Emily Daniels in Denver.   
     

    You might also find a dedicated Facebook page of young women too.  Hold onto your hope and leave no stone unturned.  There are many long term survivors and it’s up to us to stay on top of the research-there’s too much for the doctors to stay on top of.  Dr Google as we call it is not our friend.  
     

    If you’re on Twitter you might want to follow Steven V Liu MD, Christine Lovly MD and Drew Moganaki MD.   Twitter is a pretty good resource for research.   Many pages are dedicated to biomarkers.   

    Let us know how we can help and keep us posted.  You can do this…

    Michelle
     

  11. This sounds like my story!  So no, don’t waste any time in advocating for a low dose CT scan.  I had three months of antibiotics, inhalers and steroids— 4 different doctors, 13 appointments with diagnosis such as sinus infections, allergies, whooping cough, acid reflux, fungal infection, bronchitis, atypical pneumonia, pulmonary embolism before I had the CT scan.  Everyone was shocked when the biopsy revealed a stage IV lung cancer.  It wasn’t ever considered.  
     

    Unfortunately my story is shared by many.  Our thoughts and prayers are with you and the best way forward is to demand the scan.  Please keep us posted. 
     

    Michelle

  12. For any friends living in the Boston area, here is a very last minute opportunity to join The White Ribbon Project and the American Lung Cancer Screening Initiative tomorrow morning at the Kennedy Library.  President Biden will be speaking about the Cancer Moonshot Program and a number of college students from Harvard and BU will be there with their iconic white ribbons.  We've organized for interviews with the media.  Any and all help is appreciated as we work together to raise lung cancer awareness and break the stigma. 

     

  13. Very wise Laurel, “stay positive” “stay strong” should be on the list of what not to say at this point of time.   It’s okay to become unglued, it’s important not to bottle up the emotions.   Even though it doesn’t feel like it now, it will get better… in the mean time we’ll all be here to carry you along the way….

  14. Hi, I’m from KS too.  Lou has given you a really nice summary of how to start to get your head wrapped around this.  I was diagnosed with Stage IV lung cancer four years ago at the age of 51 and today am no evidence of disease.  With all the treatment advances, diagnosis is not prognosis. 
    You can get great care in rural KS without having to trek to the KC metro.  The most frustrating part is all the waiting as the medical system doesn’t ever move as fast as we want it too.  From diagnosis to treatment plan typically takes 4-8 weeks. 
    Take one hour, one day at a time.  We’ve all been there and we’re here to say that you can do this.  Brighter days are coming.  

  15. It’s always and good idea to get a second opinion.  It’s also important that to honor your mother’s wishes in terms of what she wants relative to how she feels.  Some times additional treatment may have unintended consequences so it’s important to ask about treatment toxicity. 
     

    When my mother’s team initially  recommended hospice no one in the family wanted to accept the recommendation but she wasn’t eligible for any clinical trials or compassionate use.  
     

    If there is a social worker in the clinic, that could be a good resource in helping to guide the decision during a difficult time.  
     

    I’m very sorry your Mom is going through all of this.  It’s a hard situation.  Let us know what you both decide. 

  16. That cough.  Yeah, could be a number of related things: immunotherapy and radiation can prolong the cough. 

    I did develop post chemo allergies and like Judy take a daily Claritin (Zertec made me too drowsy).  
     

    Acid reflux is another common culprit that needs to be evaluated- I mix two teaspoons of organic apple cider vinegar with a tablespoon of fresh lemon juice, 8oz of water and a little bit of stevia with dinner and that took care of acid reflux and morning phlegm. 
     

    All of this is a way of saying everyone responds a little differently and eventually it all gets sorted out when the symptoms are reported to the doctor.  Always important to remember it’s not complaining but explaining.  

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