Advice on Diet and supplements to keep in remission

[Maltipoo]

Hello, peace and health to all. This is my first day on this wonderful site. I was diagnosed with Mantle Cell Lymphoma in July 2015 and underwent RCOP and stem cell transplant with my own cells in Dec 2015. I am currently 63 and in remission and feeling pretty well. My doctor says the odds are the MCL will return and only @ 10% of MCL patients can go 10 years or longer in remission. I would like to be in remission until I reach my early hundreds so I would like to know what others are doing to be one of the lucky 10%. Anyone supplementing with Vitamin D3, special diet, going gluten free, special prayers, getting a dog? I pray we all get cured. Thank you!

[Felix_2010]

First of all I would say keeping your sense of humour will take you far, and your post really did make me laugh!

In answer to your question though, I take vitamin D, turmeric and circumin, eat a healthy, balanced diet and try to walk each week. I also have Reiki (energy therapy) 3 times each month, which is helpful for me, but might not be for everyone.

I don't know if the steps I'm taking will have any long term impact on my Lymphoma and the risks of relapse but I believe it can't hurt to try.

I am interested in the idea of getting a dog as a cure though! 😄

Best of luck, and thank you for making me laugh!

[Maltipoo in reply to Felix_2010]

Hi Felix. Thank you so much for your wonderful reply. Last night I just started re reading "Anticancer: A New Way of Life" by David Servan-Schreiber MD PhD. It has some great recommendations and he talks a lot about Vitamin D3 turmeric and circumin. How much D3 do you take per day? I take 2000IU and am thinking about getting tested for D3 levels. It is funny but I asked my Primary Care and Oncologist to test me and they kind of brushed me off. I haven't started turmeric yet. Where do you get it and do you use it on salads? The book I referred to above advised taking it with black pepper to get the best results and to mix it with olive oil. My brother in law told me the following about dogs. What is the difference between locking your wife in the trunk of your car or your dog in the trunk of your car? Your dog is the only one who is happy to see you when you open the trunk. A dog is a perpetual 2 year old with unconditional love. Thank you again and good luck and God bless you!

[bhaktadas in reply to Maltipoo]

I am taking organic turmeric daily for the past 3 years. It is incredibly effective for all inflamatiom. I buy 1000 capsules at a time for less than $20 from a Thai company called Organic Thailand. Www.organicthailand.com. I also take ginger from them too.

[Maltipoo in reply to bhaktadas]

Thank you for your reply. I take one quarter teaspoon of organic turmeric called O Organics that I get at a local supermarket. I mix it with a good sprinkle of black pepper and mix it with hummus that I use on my daily salad. The black pepper is supposed to increase the bioavailability of the turmeric. I must start adding ginger to my diet. Thank you.

Peace and Good Health

[bhaktadas in reply to Maltipoo]

Yes the black pepper increase the efficacy of the turmeric. I also take it with black pepper. Way to go! Happy 2020!

[Judyhoneycomb]

Hi Maltipoo, I am a female 78 years old and went thru RCHop and Rituxin diagnosed April 2015 with Non Hodgson Mantle Cel stage IV.. I took Riuxin monthly after Chop until Jan 2018. I am in remission but have neuropathy in feet very bad. Trouble with balance and walking. Have to use walker or cane. I was always tired and my family doctor ran lots of tests. My B12 was 182 which is low and my Potassium was low and so those are two meds I now take. B12 shots once a month. It has helped with fatigue and some of the feeling is coming back into my feet and finger tips. I also have taken Vitamin D for years. Even before cancer. I wish you good luck and your recovery to go well...

[Maltipoo in reply to Judyhoneycomb]

Hi Judy. Thank you for replying to my post. I am thrilled to find this site to make new friends who can help each other out. I wish there was something I could do to help you with your neuropathy in your feet. It is good that your Dr is checking out if you are deficient in certain vitamins and minerals. How is your diet? I have always been a huge carbo wheat eater and am trying to eat a lot more vegetables. Have you read the book by Dr Terry Wahls "The Wahls Protocol"? It is a book by a Dr who suffers from MS and was wheelchair bound. She developed a protocol that can treat all chronic autoimmune conditions by getting off gluten, dairy, eating big doses of vegetables. The diet lowers inflammation and maybe it could help with you neuropathy. Dr Wahl got out of her wheelchair by following the protocol. I pray that you feel better. Good luck and God bless you!

[YogaBob]

My Oncologist said if you want to take supplements do so if they make you feel better and stop if they don’t.

Went to the experts at Sutter Institute of Health and Healing 415-600-3503 and got a specific food program detailed for my needs. Perhaps you can do a phone apt with them, Program is open even to non Sutter Patients. Went to General Cooking Classes for people with Cancer with Loren Hinkle in Santa Rosa, CA. and got a great arsenal of recipes which are fantastic.

Other things need to figure them out.

Good Luck

[Maltipoo in reply to YogaBob]

Hi YogaBob. Thank you for your great recommendations. I went to Sutter Institute of Health and Healing site and it looks like a great place for healing. I am across the country in Mass and I think I will look for a functional medicine Dr in the area who can put me on a good anticancer diet. If I can't find anyone good here I will see if I can do a phone consult with Sutter. I also like your idea about the cooking class. I have always been a bread, meat and potato guy and am trying to get off gluten and sugar and onto vegetables. Thanks again and be healthy. Peace.

[Josie2rulrs]

Love your attitude...I like to pretend I have nothing and take it from there....I am LGFL, since 2015 one lump, stage one grade one...

I also take Immunocore by Metagenics, and iodine...

why iodine. I read and was told by others, that lymphoma hates iodine...

no one will tell you these supplements help but why not....

[Maltipoo in reply to Josie2rulrs]

Hi Josie2. Thank you for the reply. This is what I love about this site, hearing about what other people are doing. I have been taking 1000mg Vitamin C and 2000IU Vitamin D3. The main ingredients in Immunocore is Vitamin C and D3 plus other immune support vitamins. I never heard about iodine before and googled it and there seems to be a lot of info on it. I will do some more reading and I will run it by my oncologist the next time I see him. He gave the ok for 1000mg of Vitamin C and 1000IU of Vitamin D3 so I will see what he thinks about Iodine. Have you tried green tea?

Great advise about pretending you have nothing. I see my oncologist every 3 months so a week before and a week after I see him I start reading and going to sites like a mad man until I calm down and let life take back hold of me. Thanks again and continued good health and Peace.

[Maltipoo in reply to Josie2rulrs]

Hi Josie2. I was checking out iodine after reading your reply. "The Wahls Protocol" by Dr Terry Wahls has 3 pages on iodine. She writes, "The white blood cells use iodine as part of their arsenal in attacking and killing invading viruses, bacteria, and cancer cells." She advises eating seaweed which is rich in iodine. She also uses iodized sea salt. If you get a chance get this book out of the library (Kindle?). It is a book on autoimmune diseases but it talks a lot about cancer. She received the Linus Pauling award in functional medicine this year. She did a ton of research on foods, inflammation, and good health and the gut. Thank you for bringing up iodine. Peace and health.

[Josie2rulrs in reply to Maltipoo]

Thank you!

[bhaktadas in reply to Maltipoo]

I also take iodine daily and D3. Recently I was suggested to take sine mushroom powders that are excellent for the immune system. I also take alfalfa, spirulina and wheat grass. I am told I have MALT LYMPHOMA in my stomach, but I have no symptoms that effect my life. I don't drink alcohol and I have reduced my dairy a lot. I am vegetarian, no meat, fish or eggs for about 54 years.

Good luck to everyone in 2020

[Maltipoo in reply to bhaktadas]

Thank you again for your reply. I have been doing the whole food plant based diet for over one year now, no dairy, no eggs, no meat, no chicken, no fish, and also no gluten. Two years ago I was 205 pounds and am now down to 150. My total cholesterol is 130 and my LDL is 64. I feel the diet is definitely good for my overall health and I pray it keeps the Mantle Cell Lymphoma from coming back. Have you read T Colin Campbell's book "The China Study?" He indicates that the milk protein casein is one of the biggest cancer promoters.

Thank you again and Happy and Healthy New Year!

[bhaktadas in reply to Maltipoo]

Thank you very much. I am sure you will enjoy excellent health if you maintain this very healthy diet. I weigh 220 lbs and am about 6 ft tall; my weight has remained the same for 20 years, but I would love to get it down to 195. I have always loved cheese particularly, and am now reducing it by a big percent, but not completely eliminated it. I also usually have a bowl of yogurt with chia and flax seed meal every morning.

[Maltipoo in reply to bhaktadas]

I loved pizza, yogurt, ice cream and butter. That was the hardest part of the whole food plant based diet but I now don't really miss it. Since my diet is mostly vegetables and fruit, they consist of mostly water and fiber and tons of antioxidants and phytonutrients. I have to get on the scale daily to make sure I don't go below 150. I am 5ft 10 in. and I have huge bowls of potatoes, squash, turnip, sweet potatoes, cauliflower and broccoli and a lot of greens. You almost can't gain weight eating this way. I have read if there is one thing people can do for their health it is to eliminate dairy. Please try to eliminate it for one month and see how you feel. Try replacing the yogurt with oatmeal. I have oatmeal every morning with flaxseed meal, blueberries, and a handful of walnuts. I don't even miss the yogurt. Please get T Colin Campbell's book "The China Study" at the library. He gives science based evidence why we should not be eating the secretions of a different species. I loved it but don't really miss it!

Good luck and good health!

[bhaktadas in reply to Maltipoo]

Thanks a lot. I pure vegetarian since 1967. We eat home cooked 98 percent of the time. Lots of mung dhal, broccoli, cauliflower, lots of salads with avocado. Family of six had nearly zero medical expenses this year.

[Maltipoo in reply to bhaktadas]

Thank you for your reply. That is great you have been vegetarian since 1967 and that your family is following your diet. I am not as smart as you. I waited until I got NHL to clean up my diet. 😀 It is wonderful to see the benefits of eating vegetables and fruits for you and your family!

[bhaktadas in reply to Maltipoo]

Yes when I see the numbers of sick people and how much time they spend going to medical services it blows my mind. Truly my family is practically never sick other and an occasional cold when seasons change sometimes. Our bodies and minds are what we eat.

[Josie2rulrs]

Good health to you also.....Green tea is excellent ....I find that I never drink as much as I should and I really don't like it ....

I was taking pills for while....maybe ill do that again.

what do you think of alkaline water???

byw my brother in law get infusions of vitamin c also as a cancer treatment.

he has recurrent prostrate cancer...

[Maltipoo in reply to Josie2rulrs]

I have heard of alkaline water but I don't know much about it. I will have to do some reading. Thank you for bringing it up.

I pray that your brother in law has a full recovery from the prostate cancer. I haven't heard of the vitamin C treatments and will read up on it. Thanks for sharing the information. I believe that Linus Pauling who won 2 Nobel Prizes was a big advocate and user of Vitamin C. He died at age 93 from prostrate cancer. That doesn't mean the cancer was caused by using Vitamin C or that it didn't help. I would take age 93 in a second. BTW, I was taking fish pills for a few months and asked my oncologist if that was ok and he mentioned that there was a study out there saying taking fish pills can increase the risk of prostate cancer. Sometimes it is hard to understand these studies but I did stop taking the fish pills.

Continued good health and thanks again.

[Josie2rulrs in reply to Maltipoo]

wow

[bhaktadas in reply to Maltipoo]

One of my friends had his wife have IV vitamin C for NHL. That was about ten years ago and she is fine.

[Maltipoo in reply to bhaktadas]

Thank you. I will do some research on IV vitamin C for NHL. If the NHL comes back I want to see if there are any alternatives to chemo. Thanks again!

[Josie2rulrs]

Immuncore also has mushroom extracts...

[Maltipoo in reply to Josie2rulrs]

Yes I saw that. Have you read the book, "Anticancer: A New Way of Life" by David Servan-Schreiber MD PhD that I mentioned to Felix earlier in the post? I started re reading it last night and just looked up mushrooms and he highly recommends mushrooms for promoting a good immune system. Immuncore looks like it has a lot of good things in it. If you get a chance read the book. The author had brain cancer and he wanted to survive longer than what the medical community believed possible and he did. I downloaded the book from the library. Thank you for sharing the info on Immunecore.

[Josie2rulrs in reply to Maltipoo]

I will check it out....thanks

[Josie2rulrs in reply to Maltipoo]

its an expensive vitamin...$40. for 90 pills once a day...

[bhaktadas in reply to Josie2rulrs]

For all kinds of herbs and vitamins I use iherb.com in the USA. They are able to ship very inexpensively world wide. I receive orders here in Thailand normally within a week, and if I order $50 or less per order there is no import taxes. They have a gigantic selection of everything, and great prices.

[Maltipoo in reply to bhaktadas]

Thank you so much. I will definitely check out iherb.com . I am really impressed that you had the foresight to go vegetarian so long ago. What reaction do you get when you try to advise people to eat the way you eat so they can improve their health? It seems most people do not want to hear that their health is determined by what they eat. They think that changing their diet is just too difficult.

[Shar0n Volunteer]

Hi Maltipoo, I like your positive attitude. I was diagnosed with Follicular Lymphoma in 2014.

I don't eat wheat and generally avoid gluten but not obsessively. I did the ketogenic diet for about six months but as I am already thin, found it hard to keep my weight up - plus it raised my cholesterol . I put oatmeal back into my diet and now make my own bread entirely from oats with no problems and weight stable, cholesterol coming down. I eat lots of veggies, oily fish, chicken, eggs, yoghurt (which I make myself). No sweets, pastries, biscuits and no refined carbs. I get all my carbs from fruit, vegetables and oats. I think any healthy diet will work if it suits the individual. I take vits b,c, d,magnesium and a good cod liver oil for the vit a and a bit of d.

The most important change I've made is exercise. I swim hard a couple of times a week and walk/do aerobics for 30 mins each day. That has made the most difference to my health in my opinion as I feel better than I did 10 years ago.

I haven't had treatment yet as I was diagnosed early (lucky) and see my oncologist every 4-6 months. So far so good. I'm 63.

Your post was great because it encouraged us all to share what we do to stay as healthy as possible and we can learn from each other.

[Shar0n Volunteer in reply to Shar0n]

PS - well worth getting your vitamin d tested so that you know how much you need. Also green tea, while it has excellent properties in moderation can affect the liver negatively in excess. It does have caffeine also so maybe take earlier in the day.

[Maltipoo in reply to Shar0n]

How did you get so wicked smart! God bless you!

[Josie2rulrs in reply to Shar0n]

Sharon, I just started exercising...how does this affect lymphoma?

[Shar0n Volunteer in reply to Josie2rulrs]

Hi Josie I don't know whether it directly affects the lymphoma but it does get the lymph (and blood) moving.

Lymph nodes have no pump (unlike blood circulation which has the heart to drive it) so rely on muscle movement to squeeze them and force the lymph fluid out and back up to the chest area where it can be filtered. Any exercise which contracts the muscles will do this - even exercises done while seated. Walking is excellent because it moves so many muscles at once.

The other benefit would be in keeping blood sugar down which seems to be beneficial for many cancers as high blood sugar can at least partially drive many cancers and help them to grow. It's not the only factor but an important one. And last but not least - exercise improves our mood which helps our immunity.

[Josie2rulrs in reply to Shar0n]

Thank you!

[Maltipoo in reply to Shar0n]

Hi Sharon. Thank you so much for your reply and for all the posts that you do on this forum. I was reading your posts last night and I wanted to reply to all of them thanking you! You are a saint. Thank you for sharing your diet with us. It sounds like you have developed a great plan. I am in the process of going gluten free but have loved cereals, breads, pizza and cakes my whole life. I know I have to eliminate the sugars and reduce inflammation in my diet. I like the idea of having one grain like oats in the diet. Most of the autoimmune books that I have read eventually eliminates all grains which I will try to shoot for. Do you eat rice?

Great advice on exercising every day. I try to play handball twice a week but I haven't been doing anything else. You have encouraged me to walk the rest of the week. Thank you for all that you do! Peace and good health to you.

[Shar0n Volunteer in reply to Maltipoo]

I do eat a little brown rice with stir fry veggies or if out for a meal occasionally.

[Shar0n Volunteer]

Maltipoo thanks for your kind words - there are many knowledgeable people on here and I learn something from all of them. You have helped by posting your question which got us all thinking and talking about what we do.