My husband has today been diagnosed with CLL. I am wondering if there are any specific vitamins that would help the condition?
Any advice would be much appreciated.
Advice on vitamins: My husband has today been... - CLL Support
Advice on vitamins
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Wickedwooser
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Not really....others will claim it makes a difference. None of my experts ever emphasize vitamins.
But make sure his D level is checked. I already took D3 for osteoporosis and every time I see my hematologist she asks if I am still take D. I have read other posts that say that D levels could be effected by CLL. Adjust the D level after each blood test. I was taking too much at one point then years later not enough.
Ok. Thank you for your advice.
I think most every cll expert would agree that we improve our chances of living longer with cll if we exercise regularly, eat well and reduce stress with meditation and other mindful practices.
There is a world of varying opinions on here about vitamins and supplements. My view is that the best way to get vitamins is through a healthy diet, rich in fresh fruits and fresh vegetables. I think most nutritionists at major cancer centers endorse that view.
I am not aware of any vitamins that improve our cll. Cll typically impairs our immune systems. Anything that helps our immune systems helps fight our cll, so in that sense, vitamins can help.
We have people on here who take vitamins which are known to help our immune systems such as vitamins B, C and D along with zinc. But having more vitamins than we need does not help and can even hurt, so if one is getting these vitamins through fresh foods, I see no need or benefit to adding supplements.
If someone is not getting enough vitamins from their diet, then I suppose supplements could help. Plan A should be to do get on the right diet though. Tossing down some vitamin pills each morning so one can live on a cheeseburger diet is not a great plan. I know firsthand, it was my college diet plan.
Thank you cajunjeff. He was also diagnosed with diabetes just before Christmas, so his diet has had to change drastically since then. I have just been reading about some studies that suggest that vitamin c can help boost the immune system and reduce the quantity of cancer cells - could be worth exploring further. I do agree that diet will play a massive part in his wellbeing.
There are so many great foods we can get vitamin C from to meet our daily vitamin C requirements which foods have added benefits like fiber which vitamins lack. So yes, vitamin C is good. I would only take supplements if I was not getting enough with natural foods. Good luck to you guys.
While vitamin C (ascorbic acid) is an essential nutrient, it's possible to have too much of it.
For most people, an orange or a cup of strawberries, chopped red pepper, or broccoli provides enough vitamin C for the day.
Remember, for most people, a healthy diet provides an adequate amount of vitamin C.
Hi Wickedwooser, ,-
Please note that boosting our immune system may increase the number of cancer CLL cells in our body and that is NOT desired in CLL. So Vitamin C is out.
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Just taking some random amount of any supplements is also NOT desired.
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Low levels of Vitamin D3 have been proven in clinical trials at Mayo to be associated with poor outcomes in CLL, so get the D3 level tested and increase the amount of supplements until the level rises to mid range.
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Testing for low levels of iron and Vitamin B12 is recommended, especially when fatigue is involved. Supplement only when needed and keep testing to find the correct amount of supplements.
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Please read this pinned post- especially all the replies from Aussie Neil.
healthunlocked.com/cllsuppo...
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Len
Type 2 diabetes in the initial stages is easily manageable and even reversible with a low carb diet combined with intermittent fasting. There's plenty videos on YouTube explaining the details. Thousands of comments confirming it works.
The American Diabetes Association does not recommend intermittent fasting for diabetics. Would not the doctors in that association know what treatments are best for diabetics?
Diabetics should not fast on their own based upon positive comments to internet videos. If someone wants to try it for diabetes then they do so under medical supervision.
I know you are fan of intermittent fasting Leo, but if you are going to encourage people to try it based You Tube videos, it would seem important to include information that the biggest society of professionals treating diabetes does not think fasting has been proven sufficiently safe yet.
But it’s not a mainstream treatment. The American Diabetes Association doesn’t recommend fasting as a technique for diabetes management. The association says lifestyle changes, including medical nutrition therapy and more physical activity, as the cornerstones for weight loss
webmd.com/diabetes/fasting-...
Jeff, not all diabetics are created equal. I mentioned initial stage type 2 diabetics. That's when you are about to start taking a pill or started to take it recently. By all means, do it under medical supervision if that makes you feel safer though I don't think it's necessary. And in case your doctor discourages you from doing it, get a new doctor. More physical activity is very healthy but it has nothing to do with weight loss. Never had. It just shows how outdated those guidelines are. They are stuck in the past.
Leo, so your theory is that the doctors who make up the American Diabetes Association and make treatment recommendations all live in the past and that diabetics should take advice from you tube videos instead? And if someone has a doctor who follows current medical guidelines to treat diabetes instead of fasting, that person should fire their doctors and seek out doctors who like fasting?
Finally, you conclude that physical activity is healthy but has nothing to do with weight loss.
I have no problem with your suggestion someone explore fasting as a possible treatment for diabetes. It seems like there are some potential benefits to fasting, the problem being there are many dangers to fasting as well.
Telling people to fire doctors because their doctors follow current guidelines as opposed to recommending controversial fasting diets is really bad advice, no disrespect intended. And suggesting physical activity does not correlate to weight loss shows how extreme your diet views are. No, we can’t jog a few miles, eat seven pizzas, and lose weight. But exercising burns calories, surely you are not saying otherwise?
Jeff, of course exercising burns calories but the calories in calories out dogma has been long disproved. It's not about calories but the type of calories. The body handles different types of calories differently. You can be a coach potato on low carb and still lose weight. You can work out all day on a high carb diet and you won't lose weight unless you calorie restrict and then it becomes unsustainable. Don't take my word for it. Just open your mind to new information and do the research yourself. You are more than apt to do so. People have been trying to out exercise their bad diets for the last few decades to no avail. It's not doable. As to the INITIAL STAGE TYPE 2 DIABETICS. Yes. They should find a low carb doctor because sticking to the mainstream approach will leave them sicker and sicker as time goes by. Did any one of those mainstream doctors ever cure a diabetic patient? No. They put them on pills and insulin indefinitely. If you want to see diabetics cured, look at low carb doctors. Don't take my word for it. Research and find the truth yourself. I did. BTW intermittent fasting is an added benefit. Just low carb will do initially. Once the patient gets to low carb, the IF follows naturally. You are not hungry, you don't eat. It's that simple.
I did research it Leo, and gave you the link to the article saying the American Diabetes Association does no recommend fasting to treat diabetes. Nor does the American medical association.
You say that all these highly trained professionals got it wrong and that you have it right. Its hard to debate that position and you are certainly entitled to your opinion. There are some fringe doctors that agree with you.
The reason I responded to your comment is that you are giving advice to others to try a fasting diet based upon internet testimonials without disclosing to people that fasting to treat diabetes is a controversial treatment not suggested by mainstream doctors.
I think anyone that takes the advice of a cajunjeff or a LeoPa on a message board over the advice of a medical society is making a mistake.
And its certainly not personal Leo, and I know you know that. I would take issue with anyone professing to know better than the consensus of what medical professionals is best for us.
Finally, I dont know of any doctor who says we cure a bad diet with exercise. But if you and I eat the same thing each day and you sit on the sofa all day and I jog 5 miles a day, I will lose more weight than you solely based on doing more exercise.
Yes, that's the point, that we don't eat the same diet 😊. What you did is not research, Jeff. It's called reinforcing a confirmation bias. You already have your mind made up. It's closed to new information. You can't learn anything new with that approach. I read both sides and then I decide who is right. Do you know how long it took to get rid of the radical surgery cancer treatments after they were proven the wrong approach? Decades. Lots of needlessly mutilated patients in its wake. Everything new is first ridiculed as "fringe" before it is fiercely opposed and then accepted as the truth. Those doctors are heroes,preaching the truth when few listen and most comfortably stick to the mainstream lazy or worse to stick their necks out. I know the approach well. I grew up in a communist country. Play it safe and don't stick your head out or risk it to be cut off. Most importantly I know from first hand experience who is right. My mother was type 2 diabetic and what I know gave her back her life for many years before another disease killed her.
Leo, I looked to see if fasting was a procedure the major medical associations endorsed to treat diabetes. I was open to any answer I found. The answer is they do not recommend it.
I did see articles that support the notion of intermittent fasting as a possible treatment for diabetes and wrote that anyone who wants to trying should do so in consultation with their doctor.
You, on the other hand, have declared that you know more than the doctors who treat diabetes and that patients should fire doctors who do not subscribe to fringe fasting views.
Which one of us is guilty of confirmation bias?
I have zero training in science, diabetes or fasting. I rely on what I read. I read that the biggest doctor's association treating diabetes does not support fasting as a treatment. If that constitutes confirmation bias, guilty as charged.
You still miss the main point I was trying to make. You are giving people advice on here to try fad diets and fasting programs. That's okay, its a discussion forum. but you fail to disclose that your advice contradicts the advice of major medical associations.
Jeff, you conveniently ignore my arguments while your only one is that you only trust the doctors sticking to the mainstream advice. You don't have an argument. You keep knocking down your own erected strawmen. They are not mine. We are talking about doctors. There is no fringe doctor. Only doctors unafraid to challenge the status quo when they see its wrong. These are intelligent people with a medical degree, not some blackwood healers. And they are from all over the world. I take their side as I consider their arguments well supported by evidence. You can take the other side, that's OK. All I say is early stage type 2 DM patients be very wary of any doctor who discourages a low carb approach as a treatment because they are not up to date with the latest research. Everybody is welcome to do with this statement whatever they like. I keep my pre diabetes in check with the low carb method. No pills, no insulin. Try, see if you can too. What do you have to loose? Lifetime medication? BTW, blood letting, leeches, radical surgery etc. were all mainstream back in the day. Before we learned to do better. This is an evolving field. Nothing is set in stone. Only for some, it takes longer to catch up.
This is an interesting video, cutting into the topic of mainstream vs fringe:
player.d.tube/btfs/QmeyYEAL...
Leo, you moved the bar to make an unreasonable opinion sound reasonable. If all you had written was diabetes can be better controlled with a low carb diet, I agree with that completely.
It's your opinion on intermittent fasting that is the fringe view, not eating less carbs with diabetes. Suggesting someone fire their doctor for not endorsing intermittent fasting is really bad advice.
You must know that. Your response above left out the fasting advice you were pushing, which is what this entire thread is about.
I am all for controlling diabetes with diet and I suspect most every mainstream doctor in the American Diabetes Association is too.
Anyway, I'm all in on the debate. Good luck to you Leo.
Jeff, actually it's the low carb I'm advocating. Fasting comes on top of it naturally as I wrote above. That was an aside. Everybody fasts. From dinner to breakfast. That's 8,10,12 or more hours, whatever. With low carb it comes naturally that the fasting window extends as people are less hungry. If we go to extremes, on a carnivore diet many end up eating one meal a day. Not that I tell anyone to do it. I do from time to time,though.
Exercise not only is for calorie and weight control, BUT THE ACTION OF THE MUSCLES increments the absorption of medication and their results, plus the additional benefit of increased OXYGENATION.
Yes, it's very healthy. Not good for weight control though. I see plenty people jogging. Most of them overweight making no progress in terms of weight loss. And even if they slim down they gain it all back once they have enough of the self torture and stop doing what they hate to do.
Hello Wickedwooser
CLL is a cancer of the immune system (lymphocytes), so increasing your lymphocytes is not going to help. If your husband did not have CLL, then vit C might help your immune system. Ingesting vitamins and supplements may help the average person on the street, but not help those with CLL. Check with your CLL Specialist. He should eat balanced healthy diet and moderate exercise will help both his diabetes and CLL for IF/WHEN he may need treatment for CLL.
Dear Wicked,
You have done good replies on vitamins. A few of us are also B12 deficient, that needs a test though.
For the diagnosis hopefully you have plenty of time to think about it. Neil, one of our wonderful admins, has brought lots of things together in the following post. Definately don't try to read or action this lot in one go. Pace yourself:
healthunlocked.com/cllsuppo...
And please note that lots of us have had CLL for many years.
Best wishes,
Ernest
As mentioned above, so long as you eat well the only Vitamin level you might need to keep an eye on is Vitamin D. I take 1 pill monthly as prescribed by my specialist — have done for more than 10 years now.
I take Vitamin D, Zinc, vitamin K2. Not for CLL but general health since I believe the two are related. Oh, and ginkgo biloba as sometimes I'm forgetful 😊
Brazil nuts for memory. Just one a day has the necessary selenium content. My husband swears by them! 😊
Newdawn
I used to eat them but the phytic acid content made me stop. I couldn't eat only 1 and when I ate more I got the runs 😊 But I eat lots of fish instead. Sardines and mackerel mostly.
Vitamin D to help with lethargy!
being deficient in D not good, in many, it takes much more than folks realize. There is a lot written on here about D, it is worth going back and reading it.
I think the best advice is to consult with your husband’s doctor and let him/her decide what’s needed in the way of supplements, diet, etc. I’m one of the ones here that is given prescription Vitamin B-12 and Vitamin D by my Primary Care doctor. They decided I need it supplemented every day and that’s good enough for me. The days of self medicating ended once diagnosed with CLL/SLL. Now I strictly follow what the doctors want me to do. So far, I’ve had only positive results.
Be sure to let them know about ANY over the counter medications he uses, no matter how insignificant you think they are.
You’re off to a great start being a proactive advocate for your husband!
I take B12 slow release from Vitabiotics and my Haematologist is OK with that. I have also recently started to take Vitamin D too. I was diagnosed 12 years ago.
This idea that vitamin c is going to worsen prognosis is fear based and not based on any scientific understanding of studies that have been done, which show the reverse. I am a PhD immunologist and vitamin c it is not going to increase the proliferation of a cancer cell that already can outcompete deadly drugs. What it can do is improve the functionality of other immune cells and improve quality of life and boost immune function overall. Yes I agree, a healthy diet is the best way, but most people don’t know what that is or how to implement it.
Having a healthy digestion is also the most important, because you could eat the best diet or the most supplements you desire abd if you can’t absorb them, it doesn’t matter.
The only vitamin my CLL specialist has suggested I take is Vitamin D3, as my levels are low normal. I take 2000 IU per day with a meal. Definitely talk to his CLL doctor before starting any vitamin regimen. Wishing you and your husband an uneventful CLL course. You have come to a great place for advice and support. Warm regards,
Nan
NewdawnAdministrator
Hi Wickedwooser and welcome to you.
I see you’re from the U.K. and the first observation I’d make to you is health systems can be very different between the U.K. and the States.
I was diagnosed with type 2 diabetes about 20 months after my CLL diagnosis so understand your husband’s challenges. What shocked me about my diabetes dx was how little the doctors/nurses who diagnosed me seemed to know about diabetes and frankly the advice was ‘eat healthily’ and have your Hba1c done annually. Home testing isn’t supported by the NHS for anyone who isn’t at risk of hypos and they therefore won’t usually fund. Metformin is frankly supplied too easily without any rigorous attempts to turn the diabetes around without. I rejected all that advice and turned my diabetes around largely using the advice LeoPa describes. I know we are told to trust medical advice and follow guidance but frankly I didn’t receive any so turned to the reputable Diabetes Charities and their online communities. There I actually found patient experts and people who could demonstrate that they were managing/reversing their condition often without medication, usually with home testing (which many fund) but always with low carb diets.
I’m not suggesting any cranky type diets and zealous fasting routines but simple carb control because whilst people obsess about sugar, it’s carbs which convert to glucose so always look at carb content on food for guidance. A good walk after eating does stop the glucose uptake for me and is well recommended. As for vitamins, I take Vit D because I did have a deficiency identified. I also take a magnesium supplement because I believe it’s assists the impact of Vit D. I’ve not found the medical professionals I use here to be well versed in nutritional supplements and have had to drive any advice myself.
CLL and diabetes really don’t pay nicely together so glycaemic control is essential. It’s much more important than concerns about vitamins in my view. I’ve no experiential sense that they impact CLL management though I firmly believe Vit D is important and research seems to bear that out (for diabetes too).
Hoping your husband has a long Watch & Wait period without the need for treatment (I managed 7 yrs) and am now doing very well on treatment.
Best wishes,
Newdawn
Thank you Newdawn.It’s all a bit scary at the moment and my husband is very frightened about his diagnosis - he lost his father to cancer just 3 years ago. Our doctor has recommended a ‘Watch and Wait’ period, just to see how things go. He is currently on Metformin for the diabetes because his sugars are really high. He started out at 30 on Christmas Eve and is now 22.6, so it’s coming down slowly.
He’s working on it which is the important thing. The book that really helped me when I received my diabetes dx was ‘Reverse your diabetes’ by Dr. David Cavan. It’s a no nonsense, sensible look at the problem and re-framed how I looked at the issue.
Treatments for CLL have moved on massively and my CLL is now undetectable in my peripheral blood. Ask anything you want on here and you’ll always find support and advice 😊
Newdawn
Thank you all for your input, it’s helped massively. It’s been very scary getting this diagnosis, but very comforting knowing that people can have a good quality of life.
I take USANA nutritional supplements (Vitamins) for Seniors which come as a packet to take twice a day. USANA is always rated in the top 2 in the Compendium of Nutritional Supplements initially produced through a Canadian review grant to rate the top nutritional supplements or vitamins done by Lyle McMillian. This does review the top vitamins of the hundreds available with a review of the enzymes and how the antioxidants (vitamins) work for you. You can purchase this off the Internet. Now do vitamins help? I am by no means an expert in this or anything for that matter, but I keep learning and enjoy sharing. I am immensely graceful to Brian Koffman for all he has shared. As for me, I have taken USANA for years so I will only know the benefit at the end of my life. I have avoided sharing on this CLL blog since I am just starting my CLL walk and you all seem so much more knowledgeable then I am. For now I am 71, in excellent physical health with no other maladies besides CLL, I am a vegan, I read a lot and avoid tv most of the time, I play racquetball with young guys while exercising besides plying racquetball, and overall enjoy life. Taking vitamins is a personal choice, as is living a healthy life style. As I understand in my reading, only one vitamin is a pharmaceutical grade, the rest are food grade quality if you understand the difference-too much to explain here. In other words you pay for what you get. I am helped by purchasing at wholesale cost-another long sharing. As you know there is literature on D3 recommended for CLL as are green tea and Curcumin if you spend time understanding the dosing, absorption patterns, timing, half lives, acidity and alkali changes of your body in absorbing, food interactions, etc. to be able to get maximum supposed benefit. Since I am new to CLL and in a "wait and watch" mode, I am trying the green tea, D3, Curcumin on my "one man study" and yes I know most CLL specialists do not think it helps. I had one check at my one month point since starting my regiment and my count is down but is that due to my regiment or just a normal variation. I will know more on my next check since the literature says it takes 4-8 weeks to see any change. Is this hocus pocus or real, time will tell. I read and understand Mayo is still reviewing as are other organizations including some in India, Sweden, etc. There is much literature to review and needing to understand which literature published is quality and which is not.-another long story to know. Ok to the facts, the USANA has 31 umg of D3 per packet (or 1240 IU) plus the other antioxidants to help live healthy. Since vitamins only last about 8 hours, (none are once a day), it is one packet twice a day and gives me almost 2500 IU of D3 per day plus the rest of the antioxidants. You can read more on the Internet on USANA if you desire-knowledge is always helpful. That is my input and happy reading. I can share more, but then it gets even longer and it is long enough now. I taught on nutrition in the past and had a power point called Pay Now or Pay Later that I used. Keep smiling life is fun and I hope this is helpful and not just and old man rambling. lol
I just started with CoQ10 which is anti-toxicant against free radicals : It was suggested in MAYO CLINIC "Integrative Guide to Good Health" and my hematologist said: "Yes take it ! We suggest it to our patients!" After two weeks, no negative reaction. I intend to continue. Since years, I take cranberry supplement to avoid urinary infection: A substance in cranberry prevents germs clinging in urinary system. And I am taking since decades Glucosamine-Chondroitin which MAY help prevent orthopedic issues: I am 86 and no aches or pains. It seem to work for some, but medical specialists doubt. AREDS 2 formula is recommended by retina specialists that treat macular degeneration.
Hi, any info on how many of them maintained their new weight indefinitely? Everybody can lose weight, but to keep it off is more tricky. I've been keeping mine off for 8 years now. It's not the BMI. It's genes and diet composition. Plenty overweight people never get diabetic.
NewdawnAdministrator
Obesity is clearly an issue in the development of diabetes but it’s too simplistic as a total explanation especially as there are 9 types of diabetes and a significant number of our type 2 members on the Diabetes Site are not overweight. It continues to be used however to stigmatise people and dismiss diabetes as a self imposed condition.
If it was purely due to pancreatic insufficiency for a BMI over 25, many many more of the 70% of overweight and obese people in the U.K. would be diabetic. (Currently 30% of the overweight population have diabetes but about 85% of those who have type 2 are overweight).
Newdawn
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