New to CLL-no treatment-what to eat?

Posted by mylilbit @mylilbit, Apr 21, 2023

Receny diagnosed Nov. with CLL. No treatment recommended 92yrs.
What can I eat. Saw somewhere said no dairy...Diabetic diet dairy recommended. Not sure what to do.

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@loribmt

Hello @ksmith8771 Our immune system takes a hit when we have a blood cancer so anything we can do to keep up a healthy diet with plenty of antioxidant, nutrient dense foods is vital to our health. Avoid process foods, fried foods, sugar and ‘bad’ fats.
As for supplements, there are theories surrounding the benefits of ECGC (green tea extract). I’ve posted a link to the discussion in the forum below.
However, it is not recommended to take these supplements without discussing it with your hematologist because there can be some serious complications with a high dosage of this extract.
https://connect.mayoclinic.org/discussion/chronic-lyphocetic-leukemia/
I had AML which, in my case, was a very aggressive blood cancer. Prior to that diagnosis, I lived a really ‘clean’ life for decades with a super healthy diet, didn’t smoke, seldom drank alcohol, exercised and at 65 was walking 10 miles daily. I still got this blood cancer…totally random mutation that tricked my immune system. That occurrence then clipped me off at the knees in seemingly 3 weeks time. To that point, I had no symptoms though it would have started a few months before my diagnosis). Diet and a healthy life had no bearing on what happened to my immune system. However, it did impact how well I thrived through chemo and a bone marrow transplant. My medical teams have all stated that my previous life greatly and positively impacted my new life in that I recovered quickly and now, 4 years later, still in a durable remission. (And at 69, still walking at least 8 miles daily).

So you’re on the right track for finding foods and a lifestyle which will keep your compromised immune system as robust as possible. You may not require treatment for a long time, if ever, but in the meantime keep up your health with exercise, diet and a positive mental attitude.

I found this article that’s relevant to your CLL and question of diet and supplements.
https://www.medicalnewstoday.com/articles/chronic-lymphocytic-leukemia-diet
There’s no magic bullet of foods and supplements. If there was, none of us would have to worry about our bone marrow churning out defective cells. But it’s important to keep moving forward and do the best we can. I read about your “Perfect Bars” from Costco. I’ll have to give them a try! Do they come in different flavors?

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Even if you are very determined and have strong will power, there are time you may not eat the best you shoild. I also have a healthy diet most of my life and look for labels of ingredients with low sugar. I had a stage II cancer and fould medical science is changing toward holistics.
I used this information to become cancer free and now take maintenance doses. Doctors told me anything water soluble could be taken in very high dodes with little risk as long as there were no side effects. I took 1000 mg doses every 4 hours to continually replace what is flushed from my body in that time.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3893060/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2646173/
https://www.curetoday.com/view/curcumin-and-vitamin-d-treatment-may-stabilize-disease-in-patients-with-cll-and-sll

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@donsunlover

Even if you are very determined and have strong will power, there are time you may not eat the best you shoild. I also have a healthy diet most of my life and look for labels of ingredients with low sugar. I had a stage II cancer and fould medical science is changing toward holistics.
I used this information to become cancer free and now take maintenance doses. Doctors told me anything water soluble could be taken in very high dodes with little risk as long as there were no side effects. I took 1000 mg doses every 4 hours to continually replace what is flushed from my body in that time.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3893060/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2646173/
https://www.curetoday.com/view/curcumin-and-vitamin-d-treatment-may-stabilize-disease-in-patients-with-cll-and-sll

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THANK YOU for sharing your experience, @donsunlover. Because we recently bought a decent food blender, I'm having bigger servings of fruits & veggies with a little raw honey (most days) and try to take the concentrated veggie & fruits capsules a couple days a week. Watching "Fat, Sick, and Nearly Dead" again today. (it's encouraging!) Have a great day, Don!

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@loribmt

Hello @ksmith8771 Our immune system takes a hit when we have a blood cancer so anything we can do to keep up a healthy diet with plenty of antioxidant, nutrient dense foods is vital to our health. Avoid process foods, fried foods, sugar and ‘bad’ fats.
As for supplements, there are theories surrounding the benefits of ECGC (green tea extract). I’ve posted a link to the discussion in the forum below.
However, it is not recommended to take these supplements without discussing it with your hematologist because there can be some serious complications with a high dosage of this extract.
https://connect.mayoclinic.org/discussion/chronic-lyphocetic-leukemia/
I had AML which, in my case, was a very aggressive blood cancer. Prior to that diagnosis, I lived a really ‘clean’ life for decades with a super healthy diet, didn’t smoke, seldom drank alcohol, exercised and at 65 was walking 10 miles daily. I still got this blood cancer…totally random mutation that tricked my immune system. That occurrence then clipped me off at the knees in seemingly 3 weeks time. To that point, I had no symptoms though it would have started a few months before my diagnosis). Diet and a healthy life had no bearing on what happened to my immune system. However, it did impact how well I thrived through chemo and a bone marrow transplant. My medical teams have all stated that my previous life greatly and positively impacted my new life in that I recovered quickly and now, 4 years later, still in a durable remission. (And at 69, still walking at least 8 miles daily).

So you’re on the right track for finding foods and a lifestyle which will keep your compromised immune system as robust as possible. You may not require treatment for a long time, if ever, but in the meantime keep up your health with exercise, diet and a positive mental attitude.

I found this article that’s relevant to your CLL and question of diet and supplements.
https://www.medicalnewstoday.com/articles/chronic-lymphocytic-leukemia-diet
There’s no magic bullet of foods and supplements. If there was, none of us would have to worry about our bone marrow churning out defective cells. But it’s important to keep moving forward and do the best we can. I read about your “Perfect Bars” from Costco. I’ll have to give them a try! Do they come in different flavors?

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THANK YOU, @loribmt. I appreciate your insight / experiences / wisdom! Though I'm no longer eating "Perfect Bars" they did help me lose weight several years ago (along with "Larabars" which come in MANY flavors - Whole Foods carries those, I think) - the PBars come in chocolate chip & pnut butter flavors (through Costco), but have more flavors on their internet site. Will check out & bookmark the URL you shared! Thanks again.

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Hi @mylilbit, you mentioned that you are not on treatment. Are you doing watch and wait at the moment? You might be interested in this blog and video with Mayo Clinic hematologist, Sameer Parikh, M.B.B.S..

- CLL: What is 'watch & wait' and what can a patient do during this phase? https://connect.mayoclinic.org/blog/hematology/newsfeed-post/cll-what-is-watch-wait-and-what-can-a-patient-do-during-this-phase/


How are you doing?

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The advise you posted a link to lists as the first thing to do is see a dermatologist annually. WHY A DERMATOLOGIST? That was listed before seeing an oncologist or a PCP.

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@normahorn

The advise you posted a link to lists as the first thing to do is see a dermatologist annually. WHY A DERMATOLOGIST? That was listed before seeing an oncologist or a PCP.

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hi @normahorn. I’m not seeing any reference to a dermatologist in this discussion on CLL and what to eat. Can you help me out? To which comment were you referring?

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@loribmt

hi @normahorn. I’m not seeing any reference to a dermatologist in this discussion on CLL and what to eat. Can you help me out? To which comment were you referring?

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I read the link provided by Coleen Young which was the one right before my question. I did not watch the video to see if the advise was repeated there

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@normahorn

I read the link provided by Coleen Young which was the one right before my question. I did not watch the video to see if the advise was repeated there

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I see @colleenyoung’s link to Mayo Clinic hematologist, Sameer Parikh, M.B.B.S. The video is well worth watching for new CLL patients, and explains why patients with CLL or any blood cancers should see a dermatologist.
When we have a blood cancer, we are at a greater risk for skin cancers because our immune systems are weakened.
If diagnosed with CLL or a blood cancer, it’s likely patients have already been seen or are actively in treatment with a hematologist. A dermatologist becomes an important part of the healthcare team…they are anyway, but even more so with cancer patients.
Does this help explain why it’s been suggested to see a dermatologist in the article?

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@loribmt

I see @colleenyoung’s link to Mayo Clinic hematologist, Sameer Parikh, M.B.B.S. The video is well worth watching for new CLL patients, and explains why patients with CLL or any blood cancers should see a dermatologist.
When we have a blood cancer, we are at a greater risk for skin cancers because our immune systems are weakened.
If diagnosed with CLL or a blood cancer, it’s likely patients have already been seen or are actively in treatment with a hematologist. A dermatologist becomes an important part of the healthcare team…they are anyway, but even more so with cancer patients.
Does this help explain why it’s been suggested to see a dermatologist in the article?

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Thank you. My hearing is not that good so trying to listen to a video by someone with an accent is a frustrating challenge. Plus he seemed to be repeating the text in the short time I did try to listen. If my oncologist suggests it, then I will consider seeing a dermatologist

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@normahorn

Thank you. My hearing is not that good so trying to listen to a video by someone with an accent is a frustrating challenge. Plus he seemed to be repeating the text in the short time I did try to listen. If my oncologist suggests it, then I will consider seeing a dermatologist

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Honestly, I wouldn’t wait for my oncologist to make that suggestion. A dermatologist is an important doctor to have on our medical roster, especially as we age. Even more important if we’re cancer patients. Our past exposures to the sun can catch-up with us so it’s good to have those annual exams.
Have you ever had a Derm exam?

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