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JSEIB

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  1. Like
    JSEIB got a reaction from Tom Galli in Brain Mets and immunotherapy   
    A year ago, my husband was diagnosed with a 13mm brain met.  He went through three 40 minute radiation treatments (every other day). It was done by a machine they call "Cyberknife", so they were able to dial in precisely to the tumor and he didn't have to do whole brain radiation.  Two months later his CT showed the brain met was resolved. 
    My husband was on immunotherapy at the time of the brain met diagnosis.  Actually, he still is, but it is a different kind of immunotherapy now (Keytruda + Inlyta a targeted therapy drug).  His cancer was found in a kidney in August of 2018, but had already spread (mainly to his lungs) by the time it was diagnosed. 
    My husbands oncologist told us doctors are in agreement that immunotherapy can possibly prevent brain mets from forming, but radiation is the best treatment protocol once a brain met has been discovered.   His doctor explained to us there is something called the "brain barrier" which protects the brain from infection and viruses.  Because of this there is not enough blood flow into the brain to make immunotherapy as effective for treating brain cancer as it is for treating the rest of the body. 
    Hopefully, you'll never get a brain met diagnosis,  but if you do this type of precise radiation makes it much more treatable than years ago.
  2. Like
    JSEIB got a reaction from Road bum in Neuropathy due to cancer treatments   
    Okay, I just wrote this down, Ron.... thanks for the tip!  I am definitely going to get my doctor to let me at least try it.   THANKS!
  3. Like
    JSEIB reacted to Tom Galli in Neuropathy due to cancer treatments   
    John,
    I take only 2 supplements: a multivitamin and 1,000mg of Magnesium daily. The latter is to offset very low magnesium levels in my blood, another side effect of too much chemo. 
    I don’t have any experience with the supplements you mentioned. 
    Stay the course. 
    Tom
  4. Like
    JSEIB reacted to BridgetO in Neuropathy due to cancer treatments   
    To answer your question, I now recall that I took acetyl-l carnitine during and after my chemo. Don't know it it helped with the neuropathy or not- maybe it would have been worse!  I've been on fish oil with omega 3 for years.  I never thought of it as a remedy for neuropathy, but again, maybe it helped my taxol toes recede.   I don''t think any of these supplements can hurt, and if your neuro recommend them they're probably worth a try.
  5. Like
    JSEIB got a reaction from Tom Galli in Neuropathy due to cancer treatments   
    BridgetO,
    Thank you for your suggestions.  I have never been on chemo.  I was diagnosed with metastatic renal cell carcinoma in Sept last year.  They removed my right kidney, but the cancer had already spread to my lungs, adrenals, and brain.  I opted for immunotherapy  (4 dual doses) then in March they had to stop the immunotherapy due to complications, and they put me on a targeted therapy drug called Votrient ('it targets only renal cell carcinoma).  I am happy to report that all my lung tumors are gone, and I had so many they were "too numerous" to mention separately on any of my earlier CT's.   Just seven weeks on Votrient has me almost cancer free! 
    So, now I am back to work and trying to figure out how to deal with the nerve pain in my feet.  Can you read my reply to Tom and see if you've ever heard of any patients using the three supplements my neurologist suggested yesterday?  Also, I am hopeful maybe the Lyrica will help me.  
     
    Thank You!
    John      
  6. Like
    JSEIB got a reaction from Tom Galli in Neuropathy due to cancer treatments   
    Tom,
    Thank you for all your ideas on how to deal with this frustrating side-effect of cancer treatments.  Yesterday my oncology nurse started the process in motion to get my insurance company to pay for Lyrica, which I have never tried.  So far all I have tried was the Gabapentin, which seemed to help just slightly maybe in the beginning.     
    Also, yesterday I spoke with my neurologist and he said along with the Lyrica to also add a daily combination of Acety-L-Carnitine and Alpha Lipoic Acid tablets along with Omega 3 fish oil.  He said to give it a good month and see if my nerve pain calms down.  He said, especially the Acety-L-Carnitine has shown to have beneficial effects in many patients with neuropathy.
    Have you ever tried any of these three supplements suggested by my neurologist?
    Oddly, my nerve pain is mainly on the bottoms of my feet.  I just feel like I am walking with rocks in both shoes.  The lumpy areas move around every day and some days it's the toe pain that's harder to deal with.  My feet are most comfortable when they either have nothing touching them or they are in my athletic shoes with orthotic support.  So far, I can't say I have any trouble with falling asleep or staying asleep during the night due to their pain.
    One frustrating part of this is  I am unable to find a soft, comfortable pair of house shoes or slippers...even sandals to just wear around the house. 
    Thank you again for all your thoughts on this!
    Yes, I will try to stay the course...even though somedays really get me down.
    John
     
        
      
  7. Like
    JSEIB got a reaction from Brian1969 in Newby Introduction   
    Stay up beat because there are many new lung cancer treatments out there now.  It's not the death sentence it was even just five years ago.   Find a doctor who is up-to-date with all these new types of treatments....that's my best advice.  Even get second opinions and different options for treatment you are most comfortable with. 
    keep in touch...  
     
    John S.
     
      
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