Looking for resources on Nutrition/choices that help you stay in resolution/remision

littlemac
littlemac Member Posts: 22

Hi. I have learned a lot about my disease, but still am learning. I know that many of you are very knowledgeable, so I am seeking some insight. I was diagnosed with an indolent form of Follicular Lymphoma, stage 4. I finished 4 rounds of Bedamustine and Ritauximab treatments in January 2015.  I was given a result of "complete resolution" meaning they did not see evidence of tumors in my PET Scan. I am on a maintanence therapy of Rituximab for the next two years. I understand that I will regress in the future, as FL is incurable.  I am 47 and had tumors in multiple lymph nodes & in my bone marrow.  My doctor is great, but I am feeling there is a "hole" in my on going treatment plan.  He does not give me much advice on what I can do as far as diet and/or suppliments or holistic meaures to help keep me in Resolution.  In fact, he discourages supplements.  There are so many different ideas on the internet, I am not sure where to go to seek information. Does anyone have any suggestions that will help me determine what I can do to help my body continue to fight, to bolster my immune system? Has anyone gone to a dietician that specializes in Oncology?  Are alternative treatments safe after chemo?  I did read a post from a memeber that said she finised up a free 12 week course from Livestrong at her local YMCA that treats the different aspects of cancer survival (Thanks for sharing this Rocquie).   I checked in my area and there is no such course available. Any suggesstions? 

Comments

  • Eat sensibly

    i have personally lost faith in supplements. My doctor also says no supplements. For one thing supplements are not controlled and may not be as described on the label. Eat/drink whatever you want in moderation and enjoy your remission. I had the same diagnosis - FNHL stage IV. So far so good. Only thing I take is 100 mg CoQ10 to combat the effects of 5 mg Crestor. No multivitamins or anything else.

  • littlemac
    littlemac Member Posts: 22
    unknown said:

    Eat sensibly

    i have personally lost faith in supplements. My doctor also says no supplements. For one thing supplements are not controlled and may not be as described on the label. Eat/drink whatever you want in moderation and enjoy your remission. I had the same diagnosis - FNHL stage IV. So far so good. Only thing I take is 100 mg CoQ10 to combat the effects of 5 mg Crestor. No multivitamins or anything else.

    Thank you GKH.

    Thank you GKH. I appreciate your answer. I trust my doctor, I just wonder. I know there has to be a few proactive things that I could do without going overboard though. CoQu10 was one of the notes I did write down for my doctor. 

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    littlemac said:

    Thank you GKH.

    Thank you GKH. I appreciate your answer. I trust my doctor, I just wonder. I know there has to be a few proactive things that I could do without going overboard though. CoQu10 was one of the notes I did write down for my doctor. 

     

    Magic Bullet

    littlemac,

    Congrats on your remission. As GK noted, the nutritional magic bullet you seek does not (to anyone's current knowledge) exist.  Eating what makes people healthy generally is about as much as one can do to eat to avoid lymphoma.  There are no strong links between any particular foods and lymphoma, but supposidely cancer-avoidance foods like teas and tomatoes cannot hurt.  Most testimonials are wholly personalistic:  "I ate grapefruit for years, and never relapsed."  The most reasonable medical reply to that sort of statement is "So what?"

    Supplements and wellness center formulas are mostly a multibillion dollar racket.  Saw Palmetto was the rage for decades to avoid prostate cancer. After getting prostate cancer myself, I initially started taking it, and then began reading extensively about it, and the clear consensus is that it is completely worthless in avoiding prostate cancer, and is even worthless in avoiding enlarged prostate health problems.  But, you can go online or in a health foods store, and read endless, outrageous accounts of how powerful it is.  You have to learn what accounts to trust or give credibility to.  You must read numerous studies published in the best, bona fide scientific journals, not in some trade publication.

    I became seriously anemic two years after entering complete remission, and my doc initially gave me IV infusions of iron, and then an iron supplement, which I still take (my RBC is still normal, and he could never figure out what caused the anemia). Vitimans and minerals that are water-soluble cannot do harm (when taken in rational amounts), even if they are a waste of money.  Fat-soluble vitimans can build up in the body, and cause overdose and chemical imbalances, so they are to be avoided (vitiman e is a common example of this). 

    When on chemo I also slept so much that it was problematic (15 hours per day or more), and my NP recommended B-12 for energy. I now take a super B complex daily for energy, and it seems to work well and help a lot, but I am not "recommending that, just saying that it was effective for me, specifically regarding energy. If you have normal energy, you most likely have no use for it.

     

    max

  • littlemac
    littlemac Member Posts: 22

    Magic Bullet

    littlemac,

    Congrats on your remission. As GK noted, the nutritional magic bullet you seek does not (to anyone's current knowledge) exist.  Eating what makes people healthy generally is about as much as one can do to eat to avoid lymphoma.  There are no strong links between any particular foods and lymphoma, but supposidely cancer-avoidance foods like teas and tomatoes cannot hurt.  Most testimonials are wholly personalistic:  "I ate grapefruit for years, and never relapsed."  The most reasonable medical reply to that sort of statement is "So what?"

    Supplements and wellness center formulas are mostly a multibillion dollar racket.  Saw Palmetto was the rage for decades to avoid prostate cancer. After getting prostate cancer myself, I initially started taking it, and then began reading extensively about it, and the clear consensus is that it is completely worthless in avoiding prostate cancer, and is even worthless in avoiding enlarged prostate health problems.  But, you can go online or in a health foods store, and read endless, outrageous accounts of how powerful it is.  You have to learn what accounts to trust or give credibility to.  You must read numerous studies published in the best, bona fide scientific journals, not in some trade publication.

    I became seriously anemic two years after entering complete remission, and my doc initially gave me IV infusions of iron, and then an iron supplement, which I still take (my RBC is still normal, and he could never figure out what caused the anemia). Vitimans and minerals that are water-soluble cannot do harm (when taken in rational amounts), even if they are a waste of money.  Fat-soluble vitimans can build up in the body, and cause overdose and chemical imbalances, so they are to be avoided (vitiman e is a common example of this). 

    When on chemo I also slept so much that it was problematic (15 hours per day or more), and my NP recommended B-12 for energy. I now take a super B complex daily for energy, and it seems to work well and help a lot, but I am not "recommending that, just saying that it was effective for me, specifically regarding energy. If you have normal energy, you most likely have no use for it.

     

    max

    Thanks for the good advice!

    Hi Max.

     I appreciate the time you took to reply to my message.  You are correct, there are a lot of people making money off of cancer suppliments.  So far my blood work looks good.  With the maintenance therapy I will have it done every couple of months, so my doctor can spot any flags, etc... My energy level is getting better and better, I just have to learn to take it easy for the first few days after the Rituxamab treatments.  I had not even thought of whether my multivitamin is watersoluable, I will check this.  

    I have been making smoothies, trying to eat better (more veggies & fruits).  I just see things like chia seeds, falaxseeds, hemp hearts, etc.. that people say to add in.  As you said, they may be the new crop of "Saw Palmetto" wonders being pushed now. 

    I am a teacher and laying low this summer has been much needed.  I was blessed to have continued to teach through everything last year without getting sick.  It is crazy, I believe it is the power of so many great people praying for my health. My feet do not hurt and I am sleeping better.  Now I am trying to eat better and start an exercise routine.

    You are a fighter!  I am glad your energy level is improving.  

    Laura

     

     

  • Rituximab

    I completed 2 years of Rituxan mainenance over a year ago. One thing I was told about at MD Anderson was to avoid herbal teas containing echinacea while on Rituximab. Apparently there is an interaction with Rituximab and echinacea which makes the R less effective. Not a real big deal except that echinacea is a common "filler" in many flavors of herbal teas and may not be listed on the label. Still a cup a day would probably not hurt anything.

  • littlemac
    littlemac Member Posts: 22
    unknown said:

    Rituximab

    I completed 2 years of Rituxan mainenance over a year ago. One thing I was told about at MD Anderson was to avoid herbal teas containing echinacea while on Rituximab. Apparently there is an interaction with Rituximab and echinacea which makes the R less effective. Not a real big deal except that echinacea is a common "filler" in many flavors of herbal teas and may not be listed on the label. Still a cup a day would probably not hurt anything.

    good advice

    Thank you. I am a tea drinker, I will lay off the echinacea, just for good measure. Good to know!

     

     

     

  • Rocquie
    Rocquie Member Posts: 868 Member
    Laura

    I have believed in and used alternative and complementary medicine all my life. I believe in a healthful diet, exercise, and stress reduction techniques. My oncologist does not really believe but he knows I do and humors me. He is actually quite knowledgeable in the science of nutrition and has advised me and cautioned me on several occasions. 

    My cancer center has an intregative medicine branch. Registered nurses provide massage, aromatherapy, homeopathy, yoga, Reiki and healing touch, music therapy, pastoral counseling, and more. 

    During the time I was on chemo, I took nothing but all the prescriptions my oncologist provided. (Ugh!) 

    After I finished my chemo treatments, I went to my Naturapathic Physician, for help in detoxifying my body of the harmful effects of the chemo. He recommended a series of supplements. 

    I feel great! I have joined the Y and exercise regularly. I eat a very healthful diet based on vegetables, fruits, grains, healthy fats. Very little lean meat and fish. 

    These efforts may not keep me from having a recurrence of lymphoma, but meanwhile I am very healthy. I take no prescription drugs--not for heartburn, cholesterol, blood pressure, depression, diabetes, arthritis, etc. 

    Most importantly, I am happy.

    Blessings,

    Rocquie