Vitamin Supplements - good or bad?

[NSCLC wife]

Hello all, I am new to this site, but all too well acquainted with NSCLC. My husband was diagnosed with Stage IV Adenocarcinoma in Nov. 2017. When diagnosed he had a large mass on his right lung, and a nodule on his left lung. He has never smoked, so we were stunned by the diagnosis. First symptoms were weight loss, extreme fatigue, cough, and shortness of breath. I am a prolific researcher, so I began learning all I could about lung cancer.  He was now weak, had lost about 40 pounds, and very anemic. We immediately sought treatment at MD Anderson in Houston.  A relative told me about Bill Henderson's book, Cancer Cure, and his recommended protocol. The first thing I purchased was Dr. David Williams Daily Advantage vitamins and Transfer Point Beta 1-3D glucan taken with a probiotic. He was also doing the Budwig Protocol with Flax oil, liquid iron, B-12, and high grade Tumeric. He began feeling good again and like his old self. Due to the location of the right lung tumor he was not a candidate for surgery, so his 1st line of treatment was Afatinib.  He experienced terrible side effects with Afatinib, but continued as the tumors began shrinking.  After taking Afatinib for 4 months the tumor began growing once again. I asked the ONC if the supplements I was giving him interfered with the targeted drug, and he said he didn't think so because Afatinib doesn't work for everybody. His next treatment was 6 weeks of chemo and 20 Proton radiation treatments. He continued the vitamin supplements and other supplements and his energy level and blood work remained good. He had no sickness from the radiation nor the chemo.  He was able to return to work and began gaining his weight and energy back. After chemo/radiation he began Imfinzi.  He had a great response for about 5 months, then we found out the cancer had metastasized to the brain and 11th rib. More lung radiation, rib radiation, and gamma knife on the brain, and he was good to go, playing golf and working everyday. This past March he was  prescribed Tagrisso. His energy level has been normal, and he is still working everyday. Unfortunately, last week, 4 months on Tagrisso, we learn that the large tumor on the right lung is growing again, and he has two new lung tumors on the right, with one being Adneosquamous, different than the other ones. The tumor on his left lung is no longer visible, however, his coughing is also getting worse and he has lost 5 pounds the last two weeks. I apologize for the long history, but I had to tell my story before I asked you dear readers an important question.   I am feeling so GUILTY thinking that my effort to help my husband beat this dreaded disease and began feeling better is actually interfering with his treatments and chances of long term survival.  I am having a hard time and blaming myself for his progression because of all the supplements he has been taking.  Are any of you taking  supplements or alternate therapy during your treatments? I've read so many different conflicting reports where some are pro-supplements and others are not. I am so confused.  Has anyone progressed on Afatinib, Imfinzi, or Tagrisso?  I truly appreciate hearing from others that have had similar responses.  Thank you!

[Rower Michelle]

Hello there and welcome. 

You’re asking an interesting question, there are many of us on this forum taking various supplements to help reduce inflammation and enhance our immune system. 

Its important to seek the guidance of an Integrative Oncologist to build the best cocktail. I’m on a different inhibitor with some supplements that my Integrative MD, Oncologist and pharmacist reviewed with Memorial Sloan Kettering. 

The only known contraindication with an EGFR inhibitor is vitamin E.  I agree with the oncologist, it’s very unlikely any of the supplements are a contributing factors to this sneaky disease’s mutations.  It happens in EGFR lung cancer without a known cause. It’s not uncommon to have different types of cancers in each lung.  

You’re trying to do everything to support your husband’s fight.  Time to put your mind at ease. Finding an expert in EGFR is worth considering. The Lungevity Help Line May be able to assist.  

Michelle

[NSCLC wife]

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Thank you Michelle for your reply and words of comfort. I will definitely reach out to the Lungevity Help Line for guidance. Wishing you good results with your treatment. God bless!

 

[Rower Michelle]

Blessings to you as well. Another resource is the GO2 Foundation.  They have a helpline to connect to the “mutant experts” too. 

I wouldn’t think of it as a second opinion but more of an expert consultation, a value add to the treatment team.  When these little buggers start mutating two heads are better than one. It might also be worth asking about clinical trials as there are many many trials in EGFR. 

Keep asking questions what else can be done.  If the onc gets offended by your outreach, might be time for a different doc.  

You’re doing a great job advocating for your hubby!  Hold onto your hope!

Michelle

[BridgetO]

I agree with Michelle that your husband's onc ia probably right about the supplements not causing progression.  I have had 3 cancers, the most recent being a stage 1 NSCLC.  I'be been taking supplements through my treatments for all three, as well as having acupuncture. I had advice from a naturopath.(we have them in Oregon, but I know they're not licensed in all states.  I had a stage 3 gynecologic cancer for which I had chemo. I carted my bag of supplements to my first chemo appointment so they could be reviewed by the onc pharmacist. He said they all should be OK, except for one, which included a raw animal product. This made sense to me because I knew that chemo can reduce white blood cells and impair immunity and so anything raw can be a risk. So I discontinued that one.

I think the main risk in complementary medicine is that patients will expect it to be curative and so they won't have conventional treatment. I'm not sure whether my complementary treatment helped, but I don't think it hurt any! 

Bridget O