What can i eat or not eat! new member.

[Bankiedonnie67]

Hi,

Anyone point me to what i deffo can and cant eat? bit confused with my new situation lol!

[mdsp7]

I would buy Paul Pitchford's book Healing with Whole Foods and look through it. I used the anti-cancer diet in it for several months after being diagnosed in 2008 with a poor prognosis and within a couple of months my lymphocyte count had dropped in half. I also take the book out now and then to get ideas. Some of the stuff Pitchford talks about seems weird, but I skim past what doesn't make a lot of sense to me and read what does: there is a lot of wisdom in it. Take from it what makes sense. Good luck! I am still watch and wait, and my blood counts are now mostly normal except my lymphocytes, which are one third of where they started. There are a lot of things you can do and I wish you the best. Strength and courage!

[Newdawn Administrator]

I’d say you can eat what you want as long as it’s nutritious and makes up a balanced diet. There’s no need for faddy foods or austere restrictions.

CLL shouldn't stop you living and enjoying a normal life.

Newdawn

[Lady_Lymington in reply to Newdawn]

Hi Newdawn. I was advised to avoid pre and probiotics. Soft cheeses, Shellfish, smoked Salmon and undercooked meat, especially during treatment.

[Newdawn Administrator in reply to Lady_Lymington]

Good advice during treatment Lady L and undercooked meat at any time. Donnie is newly diagnosed and not on treatment.

Regards,

Newdawn

[Donnamccll in reply to Lady_Lymington]

I agree with Lady Lymington. Avoid undercooked meats and soft cooked eggs. And avoid food that has been sitting out for a while. I practice the 30 minute limit.

[MisfitK]

I agree with NewDawn...there isn't a "correct" diet for CLL, so the best advice is to normally avoid (as much as possible) the foods and drinks that bring little nutrition and focus on the ones that do, eating a balanced caloric and nutritional count for your sex/age/activity level/secondary health conditions. Whether you do that by focusing on meats/fish or you decide to go more fruits/veg or you try to go somewhere in between, that's up to you.

[LeoPa]

Read this book and once you are done reading you'll have a solid foundation. From there it's up to you to figure it out because CLL is so diverse there are no guaranteed dietary interventions that work for everybody.

Robert Lustig MD: Metabolical.

[J1015]

welcome! I eat whatever I want and haven’t changed my diet at all. I have always eaten a healthy balanced diet with small portions of meat and a lot of salads and steamed or grilled veggies. As for sugar, I try to limit it just because everyone should. Too much is bad for you and causes other issues that we don’t need to deal with. But on weekends, I do indulge in dessert if offered. I was a long distance runner when I was diagnosed. I had a hip replacement two years ago that stopped the long distance but I still exercise every morning either on my treadmill or rowing machine. I was told that CLL is basically cancer of the immune system so the key is to avoid getting sick. I haven’t been sick once since diagnosed in 2016. Even COVID was no more than slight allergy symptoms. My white count has crept from 1900 to 2300 and lymphocytes are up. My IgG, IgA and IgM that were hovering below normal have moved back into the healthy range. I assume your doctor is monitoring those numbers. Bottom line is to live a healthy lifestyle and enjoy life. Wishing you the best.

[ifitworks]

Hi there Bankie - sorry to hear of your diagnosis - I realize how traumatic first hearing of it can be. But then things can get better... much better. Of course, there are no downsides to eating foods that are healthy, nutritious and healing. If you turn to the TRUE EXPERTS - as in Doctors and/or nutritionists or food scientists who only use accepted studies and the results for their recommendations then you can't really go wrong. Someone already mentioned Paul Pitchford - another is Dr. William Li who has a list of over 200 foods and a sub-list of foods that have shown in studies to have a positive effect on immune systems and even fighting some cancers. It would seem to be quite clear now from what we know that whole, and organic where possible, foods with an emphasis on vegetables; fruits; whole grains; legumes; seeds & nuts and reasonable portions of fish, seafood and unprocessed meats. I've been eating this way since my diagnosis 1 year ago - including large veg / fruit smoothies several times per week... just back from my 1 year check and I am now asymptomatic from CLL and blood markers are right on the cusp of being in the "normal" range, so I am very happy and excited about that! I feel as good as I ever have in my lifetime. I have no proof, of course, of why this has happened, but diet was about the only thing that I changed in a measurable way. Best of luck to you... !

[FloridaGal2 in reply to ifitworks]

Not sure I'd count on diet to change CLL progression. Perhaps to make your body healthier overall. Exercise has proven to help. What foods are you eating...looks like the diet is a standard healthy diet recommended for everyone ...

[GMa27]

My hematologist said to enjoy life & don't punish myself with eliminating foods. No fad diets. I enjoy red meat 6 days a week, sugar & carbs. Food doesn't directly effect our disease. Everyone is different. When I started to reduce certain foods, I felt worse. That said, for most people moderation is a good guide.

During chemo I was not allowed to have raw fish, no alcohol or probiotics which was not a problem for me since I didn't do either one & hardly drank anyway.

💕

[mdsp7 in reply to GMa27]

My oncologist had candies on the desk in the waiting room. When I said: "Why are you giving sugar to these patients when you use radioactive sugar to spot where cancer is growing because they eat it at a rate 40 times that regular cells do? " she replied: "well, they will all be dead in 6 months anyway so they might as well feel better and enjoy it." I said: "Excuse me Doctor -- I'm one of those patients...!"

After awhile, when, on my special diet, I failed to progress and even started to get better, her nurse started to ask me and make notes to track the kinds of foods and supplements that I ate. Doctors generally are not that well instructed in the qualities in foods that help or hurt people with differing constitutions. But most doctors do recommend exercise and a healthy diet to their well patients, in order to keep them well. I speak from personal experience that getting rid of bad oils and junky foods and eating more vegetables than you really prefer to can make life weirdly a lot better.

[GMa27 in reply to mdsp7]

Yikes I would never go back to that doctor

[mdsp7 in reply to GMa27]

Right except that she is honest and went to college when she was 10 so she isn't necessarily high on social skills but is very smart, and a good learner. She has been my main oncologist since 2008 when she first saw my terrible bloodwork which came back from the lab marked poor prognosis.

She never forced any treatments on me and listened to me when I had ideas about what was going on in my body. I think she has saved my life several times, for instance, not prescribing antibiotics once when I spiked a fever on a road trip with my daughter, but telling me to get to an emergency room, which turned out to be the right thing to do. When my CLL burden was worse and I was more prone to infections, and she was always available by phone even seeing me within hours. I think she is one of the reasons I am alive, and I think she does not have candy at her counter anymore, I think she learned from that encounter with me, and I have learned a great deal from her. When I have taken her advice, it has been spot on, and if I needed to start therapy, she is the one I would turn to.

I only included that moment in my CLL life in response to your statement about the doctor not being terribly worried about what you eat. I was not trying to disrespect my fine doctor. Life is a learning experience, and that was not her finest moment. It must be hard being an oncologist and having to keep a distance from patients for your own sanity.

[Bankiedonnie67]

Many thanks everyone for your help,really a lot to go on with this...glad i joined this forum,so many people are very helpful.Much appreciated!

[scryer99]

Beer and barbecue worked fine for me.

In seriousness, though, you will find a wide range of nutritional advice in this space. Very little of it however has strong scientific evidence and much of it is under debate. Your doctors will likely be more conservative than what you will find in forums like this. Different strokes for different folks.

Two pretty clear evidence-backed findings, though:

CLL tends to make one more run-down over time. A healthy diet is one good way to counter that at least somewhat.

The one unequivocal finding is that exercise in moderation helps. It does not have to be tons, but you'll feel better if it's non-zero.

[CycleWonder]

When I was first diagnosed, my CLL specialized recommended three things:

1) Avoid taking supplements unless you are tested and are low. Supplements like fish oil may help the CLL more than you. I tested low for Vutamin D so I take that.

2) Get all the vaccinations you can now because right now your immune system is the best it will be for likely years.

3) Prioritize exercise. Find one or several that you enjoy. I recommend outdoor exercise mainly because it’s safer than going to a gym to avoid colds and other illnesses, and being outside lifts up your mood.

We used to ride bikes as a family twice a week or so. After my diagnosis, we planned our day around our exercise. Sometimes we went hiking but frequently we rode our bikes. Sometimes we signed up for events and trained for them.

The reason is that exercise strengthens our immune system without increasing our white blood cells. Some regimes touted to improve your immune system do so by actually making CLL worse. Exercise is a natural way to help potentially your body fight off illness.

In addition, exercise generally tends to make one feel better, increase your energy, and if at some point you need treatment, exercise can aid in dealing with side effects.

[Freedom202 in reply to CycleWonder]

Why are fish oils good for CLL but not for me please?

[SofiaDeo in reply to Freedom202]

I think it's more along the line of, fish oil can affect platelets in some people. And it's better to eat the actual food, instead of just taking a supplement. Fish oil doesn't stimulate lymphocytes to grow, to my knowledge.

[CycleWonder in reply to Freedom202]

When I was diagnosed in 2017, there were a number of research papers published from 2011 to 2014 on the benefits of fish oil for acute leukemia. At times, people don’t pay attention to the type of leukemia that is being discussed. My CLL specialist was suggesting to be aware that it is best to focus on having a healthy diet rather than supplementing unless you are tested and shown to be low, as I mentioned I was for Vitamin D.

And some suggestions for improving our immune system actually increase white blood cells, which we don’t really want with CLL.

[Freedom202 in reply to CycleWonder]

thank you 😊

[81ue]

if you're not on medications, enjoy grapefruit now while you still can!

[Astro617]

Eat a healthy diet. That's pretty much it! Personally I follow a plant based "anti-cancer" diet. There are lots of opinions on what exactly is a healthy diet. But we can all agree on what the junk foods are. Wishing you well.

[SERVrider]

As 81ue said, if you go onto a BTK inhibitor, you cannot eat grapefruit, drink grapefruit juice or delight in Seville marmalade on toast. Thus, if you like Frank Cooper's Oxford marmalade (which I did), gorge on it now before you start treatment! I can only watch my wife enjoying it now.