I was recently diagnosed with CLL. Was sent to oncology for confirmation and treatment. I elected to go for a second opinion To a specialist in hematology and oncology. I am staying with that physician, as she was much more informative and on top of things than the first doctor. We are now on the every three-month blood test with a watch and wait. No medication. At the same time, I was also diagnosed with basil skill skin cancer, and had a polyp removed that was pre-cancerous. I have to go back for a new colonoscopy in three months to see if they got it off. Also diagnosed with high cholesterol and very high triglycerides.
I immediately went on a plant-based diet and my cholesterol and triglycerides are under controlnow, problem is...is plant-based best for CLL or do I need meat or seafood?
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Dakota10
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Hi. Hope you're feeling ok. I was diagnosed last March and started Ibrutinib in September so all pretty fast! I gave up all red meat, processed food & alcohol - I just want to do everything to help myself recover quickly. I do eat fish. Apart from the early side effects of the medication, I feel well and I think this is helped by my choice of diet. As to being cold - I am always freezing. I think CLL has broken my internal thermostat 🤣 - my husband walks around in shirt sleeves and I resemble an eskimo. I send you very best wishes. x
Thank you so much for your reply. I hope the meds help you along with your diet everything recovers quickly. Giving up redmeat was not a problem for me sometimes I would like to have my shrimp or fish and I’m still working on the process foods.
Same in our house, I am wrapped up warm, hubby in shorts even in the cold UK January we are in the middle of. I treated myself to the Dyson hot and cold fan, with a HEPA filter, and that can warm (or cool) a smallish area around me while the rest of the house isn't as hot.
Are you in UK? They are fairly well known here. They are big, the smaller ones don't have the heat option. Also, they aren't cheap - they are around £500. I originally got mine for the HEPA filter because the air in my sewing room gets very dusty especially if I am overlocking and since CLL diagnosis I have had gunky nose and sinuses.
My internal thermostat isn't just broken, it's shattered into a million pieces. Lol
It can be 70 and I'm freezing, then 71 and I'm sweating. It definitely takes some getting used to.
I was diagnosed less than a year ago but from bloodwork, have likely had CLL for about 4 years. Still no treatment as of yet. I'd like to keep it that way.
Thank you best of luck to you too. I was wondering about the thermostat problem because I have never been cold like this to where I can’t get warm. I was just diagnosed in November, and my doctor said no medications until needed.
Your diet will only affect your general health and overall well being. That said, that’s huge.
Whenever the day comes that treatment is indicated, the better your health, the better your treatment options will be.
Dr Keating of MDA used to say the biggest problem you have is the one right in front of you. I’m glad that you’re eating healthy and got everything under control.
You asked: "is plant-based best for CLL or do I need meat or seafood."
It is close-to-impossible to eat sufficient blood-building plant food (spinach and other dark green vegetables would be a best choice) to rebuild red blood cells as you need them. Complete avoidance of red-meats can lead to incipient anemia.
There's no evidence that drastic diet modifications or investing in exotic supplements can build any better immunity or lead to a cure for CLL.
Do yourself a favor and enjoy a BALANCED diet (i.e., one which involves some dairy, some red-meat, etc.). Eat a balanced diet and use the energy and vitality that this brings to engage in age-appropriate exercise. You'll even feel warmer!
The problem with not eating red meat or dairy is the lack of vitamin B12 in your diet. This is crucial to the production of healthy red blood cells. Lack of healthy red blood cells will cause you to be anaemic, and won't help the fatigue. I had cut down on red meat, dairy and eggs because I have T2 diabetes and am supposed to try and lower my cholesterol, even though it was fine. When I had my b12 tested it was on the cusp on normal, but I am now on injections and have been told to to at least one portion a day or eggs, dairy or red meat. As others have said, our doctors will give us advice on what we need to eat to keep our body healthy, and it will be different for everyone.
Since everyone on here has issues particular to their health situation, a one-diet-fits-all is not a reasonable solution. I have some recently elevated kidney numbers all of a sudden. My nephrologist said that I could have animal protein however for long term good health go with a plant based diet. My choice. Your best course of action is to consult your doctors on what they suggest for you since they know your whole health picture.
Thank you. I will be following the advice of my doctor very closely. However, I have only seen her one time and I don’t go back until February 14. She doesn’t know my whole health picture yet because I’ve only seen her one time, but, I trust her.
Sorry to hear about your husband. I lost my husband a little over a year ago from leukemia and my son nine months before that. Being alone after fifty three years of marriage is the hardest part of handling all the stress in my life. I just do one day at a time. I was diagnosed December 2019 and realize I will not understand much about this disease. I just wish I felt better and had more energy. Best of luck to you.
I am so sorry for the way things have gone for you. I took care of my husband for 10 years before he passed away. After six months and still being very tired, I went on a plant-based diet. after two weeks on this diet I had more energy and felt better and could think clearer. Now, I’m not saying I will stay on it the rest of my life, I may add fish, but I do feel better on it. I hope things get better for you.
Hi, not sure there's a diet solution to CLL because if there was I think we would have all been on it by now.
What forum shows from those that have lived with this condition for a good long while is keeping as healthy as you can seems to help & as part of that regular exercise is certainly something to consider. Exercise of say walking 3 or 4 times a week for 30 to 40 minutes is something to be considered.
Take care & stay positive because it is possible to live with this condition for many, many years before treatment is necessary.
Thank you for your answer I do plan on staying as healthy as possible and I do walk a lot. I have a Fitbit and I raised it up to 12,000 steps a day. Plus we have a farm so I get exercise feeding the animals and walking the horse.
I am staying as positive as possible and I have awesome support with my children. My husband passed away in March and sometimes the positive part is a little hard.
So sorry to hear that you lost your husband. I also lost mine 18 months before my CLL diagnosis which has been a few years now and I am still winging this thing alone. Glad you found this site-it has been a sanity saver for me.
Dakota10
,
CLL is a manageable disease that affects each one of us differently and needs to be managed individually by you and your doctors.
I am impressed that so soon after the diagnosis you asked for a second opinion and choose another doctor who met your needs. Stay assertive, it will help as you deal with CLL and side issues like nutrition, secondary skin cancers, and precancerous colon polyps.
As you manage all of these concerns, you may wish to consider visiting with a major CLL treatment center for referrals to their nutritionist and their dermatology department for immune compromised patients. You may also consider getting introduced to an Immunologist working with a CLL specialist; as your immune system declines the Immunologist becomes important.
You have to continue being your own advocate, but building a team of health care experts who understand CLL and can work together takes much of the burden off you.
Thanks for the advice. My doctor is at Cleveland Clinic. Also my second opinion doctor for the polyp. I am writing down everything I can think of to ask at my next appointment.
My Dr. at Sloan told me they are currently doing a study of keto diet and helping with CLL ... I despise how carbs make me feel but I am also a thin person so when I don’t eat carbs people tend to think I am crazy. I would love to learn more about plant based ... but truth is it’s all so hard to with 3 little kids around to take care of first. I don’t want to push any eating habits good or bad on them. Just try to show them balance.
With plant based, you can cook the little ones the same as yours and maybe Add chicken or meat or whatever to satisfy them. There is a group called “whole food plant based support” on Facebook if you decide to try it.
Had a few other cancer experiences about 20-15 years before the CLL... allergic to mist seafood and the majority of pesticides used on fruit and many veggies... there is no straight answer
Balanced diet...Vegetables, healthy carbs, protein. The challenge is to wean yourself off of sugar and sugar substitutes. Sugar feeds the cancer, like putting gasoline on a fire. Also, once I was diagnosed with CLL, I did not get treatment for 9 years. No treatment is a form of treatment.
Exercise to keep your strength up, meditate (learn how). I was eventually given Ibrutinib and stopped treatment due to a medical procedure and my numbers (bad) went down and good numbers started to climb. I have been off treatment for almost 2 years and feel great. Cll is an opportunity for personal growth and if you are up to the challenge, you can reap the positive benefits of changing your life.
I am doing a plant based diet ( with an occasional cheat). The plant based cuts out the sugar. I still get the protein and carbs, just not red meats. Thinking about adding fish back in though.
I have been thinking the past week or so that I need to learn how to meditate and possibly yoga.
I would agree with caven , balanced diet is the best. Eat healthy diet and doing moderate exercise will not cure CLL, but will get you ready for if/or when you need treatment. You have a blood cancer and all of your blood cells are primarily protein. Red meat is the best source of protein. The vegies will help your cholesterol and triglycerides. Blessings going forward.
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