Recently diagnosed with CLL

I am a 56 year old Male who was diagnosed with having CLL in May 2016. I am also a diabetic (type 2). I'm seeing another hematologist/oncologist in Aug for a 2nd opinion. I was told it's stage 1 as it is in my lymph nodes. The nodes are still enlarged in my neck, back of head and shoulder. I had a PET scan that showed enlarged nodes in my chest and abdominal area.

I've gone on a vegan diet with fish and have eliminated other meat and dairy. Have others done this too? I'm exercising most every day, trying to get to an ideal weight.

I had twitching in my face and added vitamin B12, which stopped the twitching. I'm also on a multi vitamin. Seeking advice on other nutritional remedies. I'm told to wait and see how the disease progresses.

I'm also now having issues with slow reflexes and some twitching in my arm. I'm thinking of seeking advice from a holistic doctor to understand what nutrients I may be lacking.

Pete

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15 Replies

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  • I suggest you see your GP and have your B12 and intrinsic factor measured, you might not be getting enough B12 through supplements and may require monthly injections... it is a simple blood test. Also have your 25(OH)D tested ...for Vitamin D.

    vegansociety.com/resources/...

    ~chris

  • I would see a CLL specialist. Do not take supplements without consulting your doctor first, IMHO. If you do require vitamin D, then D3 is preferable to D2. Google it.

  • Thanks!

  • I would just like to welcome you to the site and for doing your first post! Pete.

    Cannot help re your diet but there are many on here who should beable to and I'm sure they will be on later.

    SorryI am having problems with the site freezing and having to finish your post in edit Pete. This is the second time so going to have a break.

    Best wishes.

    Sue

  • Welcome,

    Medical advice here is phenomenol! I use accupuncture along w western medicine and it has helped tremendously. I did need to go through a couple practitioners who did not work for me but Have a great one now. It relieves the sluggish feelings and and helps with the depression for me. Best of luck and you are never alone in this now that you've found this site. đź’•

  • Pete - I also went on a vegan diet when I was diagnosed but w/o the fish (except for special occasions). I've had my heavy metals tested and mercury was high, so the fish had to go. I don't know that heavy metals are associated with CLL, but I don't want my body fighting against too many things. And you have to take B12 while on a vegan diet, but it would be good to have it measured. Also, be sure your vegan diet is plant based. There is a lot of processed, vegan junk food out there. My WBC and ALC seems to be impacted with this diet. I also recently adding juicing to my routine, on weekends, anyway. Mainly carrot/apple juice but if I have leftovers from the week of greens, cucumbers, or anything else juice-able I'll add those.

    I started this year going to an integrative medical doctor and he measured my nutrients. I'm lacking all around so he has me taking the B complex because those vitamins seem to trigger the body to absorb or create the others.

    The vegan, plant-based diet did get me to my ideal weight, also.

    I'm in stage 0, W&W, and have not had any symptoms, so no advice in that area. I hope you find a good hematologist and holistic doctor!

  • carrot _top

    Now that one year has passed, how do u feel , energy wise? Pls update as I was dx 9 months ago, wnw, and started to feel very low energy for past few months.

    vinnet

  • I'm not sure there is hard evidence that vegan diets are the way to go. Someone recommended cutting out all carbs, which is essentially the opposite diet. When I first started W&W, I felt like I had to do "something" so I went on the Cancer Centers of American diet for about 3 months where I was aiming for 10 servings of veggies a day and eliminated most sugars and was down to 3 oz of meat a day or less. I lost 20 lbs, but it didn't slow my progression at all and I didn't feel great. Went back to a more "normal" diet and I feel better and the weight stayed off. That said, diets are so personal I think you have to do what you feel is best for you.

  • It was the 3 petrie dish experiment with cancer cells and blood from someone eating a standard American diet, blood from a vegetarian, and blood from a vegan dropped into the 3 different petrie dishes, with the vegan blood killing the most cancer cells, that convinced me to eat a vegan diet. Michael Gregor talks about this experiment at nutritionfacts.org.

  • I couldn't find the petri dish experiment on the referenced website, but I wouldn't put much credence in it. CLL cells are quite fragile and easily killed in a petri dish and in our blood. Unfortunately it is far more difficult to kill them where they protect themselves by controlling their microenvironment in the nodes, spleen, bone marrow, etc. Unfortunately CLL is still considered an incurable cancer, because it eventually re-establishes itself from those hard to reach locations - even by chemotherapy treatments.

    CLL cells are so fragile compared to healthy B-lymphocytes that they easily rupture during a simple blood draw and many of us will regularly see the note 'smudge cells present' on our blood test reports. In fact the presence of smudge cells is so common in CLL patients, that observing them in an undiagnosed patient is a strong indication that the patient has CLL. The percentage of smudge cells can actually be used as a prognostic indicator. 'The 10-year survival rate was 50% for patients with 30% or less smudge cells compared with 80% for patients with more than 30% of smudge cells': ncbi.nlm.nih.gov/pmc/articl...

    With regard to the Nutrition facts website, 'Greger's promotion of veganism has been criticized for including exaggerated claims of health benefits and for cherry-picking research even though the vegan diet can be a healthy one.'

    en.wikipedia.org/wiki/Micha...

    You can find much stronger voiced concerns than that, too. So while you may feel better and be healthier on a vegan diet and it might slow your CLL progression, get that verified by seeing a specialist who will monitor your CLL by checking your spleen, liver, internal nodes, blood counts, etc.

    Neil

  • Neil

    How to determine smudge cell percentage? I dont see this in my cbc report? Also neither in flow cytometry report, which confirmed my CLL 9months ago.

    Vinnet

  • Providing the percentage of smudge cells present requires a manual inspection and was done as an experiment to see if there was a correlation between the percentage of smudge cells and CLL prognosis. As the paper says ¨Slides were randomly assigned to five hematopathology technologists blinded to patients' clinical and outcome data. Each slide (one per patient) was evaluated once by one of the five technologists.¨

    I´ve only ever seen the statement ¨smudge cells present¨ every so often on my CBCs, never a percentage. Unless a manual count is specifically ordered, CBCs are automated and smudge cells prevent the automatic sorting of white blood cells into white blood cell type, because the cell diameter (and hence cell type) can´t be accurately determined. Flow cytometry testing is highly automated.

    I only referenced the paper to highlight how easy it is to provide a misleading, apparently scientific demonstration of how different substances can kill CLL cells. As CLL researchers know, CLL cells are easily killed in a petri dish and how easily that´s done sadly bears no relationship to how effective treatment of a CLL patient will be with that substance. We now know that CLL cells in the blood are in their dormant, energy depleted stage and most susceptible. Killing them in the nodes, spleen and bone marrow is much, much harder.

    Neil

  • Hi Pete. Welcome to the group. I have no advice on the effects of any particular diet but I believe that if something makes us feel good then stick with it, the mind is a powerful tool. I also believe, along with many others, that stress causes a lot of problems but it's not always possible to alter certain things in life even if they are detrimental to our health. Carrot_Top refers to a website above. The accompanying book 'How not to die' may be of interest to you. It was given to me. However, For myself, I just TRY to eat as healthily as possible but I'm afraid I most certainly fail a good percentage of the time.

    Peggy

  • Hi Carrot_Top, I am all new to this as being recently diagnosed at the beginning of this year. Like many others I have had a great desire to do something and I have been taking a lot of exercise, mainly walking and also juicing. It's far to early to say if it has any effect on CLL but what I do know, which is helping my positive attitude immensely, apart from the great source of info and support on this site is I feel much healthier and have far more energy which must be a good thing.

    David

  • Hi Pete,

    Sorry that you are now One of Us! You have connected with a wonderful support community. I hope you are as lucky as I was to get only the best advice possible. You will receive some great medical advice from people who have the medical background needed and you will receive just a "hello" from people like me. No medical background, but a lot of caring and a big heart.

    I was diagnosed with CLL May 2015 and have been taking B12 injections and a prescription Vitamin D, both stayed very low. OTC Vitamins were not helping. After taking the injections once a week for several months, I now take it once a month and the Vitamin D once a week. I go back to my GP next month for recheck. I have also been diagnosed with tremors and early stages of Dementia. But the Dementia is not from the CLL, my doctors have been watching me with the memory loss since 2011, but just diagnosed it as Dementia because of some changes with memory loss, actually worsening, etc. I am doing great compared to a lot of people and I continue to work. I am Blessed by an amazing God who watches over me every day.

    Good luck with your journey with CLL and may God bless you as He has blessed me.

    Don't forget to keep a positive attitude, it's 99% of winning the battle!

    Faye A.

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