Hi all
Could someone advise if live yoghurt/kafir is ok to have? I feel as though my gut microbiome is struggluning as I’m experiencing constipation and bad smelling wind in the evenings. This isn’t going down well with my partner at night in bed!!
I’m on the maintenance dose of Venetoclax, 16 months in on the 24 month treatment with V&R. I’ve been neutropenic but I’m ok now and all blood markers are good. I have a B12 deficiency which I’m having injections.
Any advice would be welcome.
I am extremely sorry as I’ve inadvertently used a racist term in my post. It should have been kefir and not kafir. Please accept my sincere apologies if I have offended anyone.
I never even noticed, Cheltman, and I for one, am certainly not offended,
(Far to many more important things going on with the world , and us, at the moment.
I wish you well. Ron
I just thought it was a foreign spelling. You can go to your post and click on "more" and "edit post" should show up.
Good luck with your microbiome. I've had to resort to a low FODMAP diet to settle mine down. This is an elimination diet to help find out what foods you're not tolerating. I've had no problems with plant based yogurt or probiotics.
Hi Cheltman, I spoke to my Haematologist about this very subject, recently.
His view was, that I should stop taking Keffir and any other Pre or Probiotic, once treatment has started.
Another Haematologist prefers that I do not take anything like that, even during W&W.
Hope this helps.
Regards Ron
Thanks Ron for your reply. Did your haematologist say avoid because it was a live bacteria or something else? I’m sure the treatment and possibly the CLL has affected my microbiome as there has been a marked change in bowels and I’ve never suffered IBS symptoms previously.
Goodness--an important question. Did you use kefir or other Pre or Probiotic before treatment? Certainly I have found kefir very good indeed for regulating my system. But I am only on watch and wait.
JEEA
I have used in the past but nothing regular. I was using before my 1st treatment 3 years ago (B&R) but stopped once the treatment started. This knocked my system about for a while after but it got back to its usual regular self @6 months after. When I was neutropenic last year I was advised to not take any live bacteria which made sense. I’m just wondering if I should restart to try and settle things down.
I never got into the technicalities of his advice, Cheltman,'
However, from what I gather, there is some adverse reactions to us taking it during treatment. I have stopped altogether, vjust to be on the safe side,
Regards Ron
I think it was something to do with the live bacteria, but not certain. I chose to follow his advice and am still taking the Keffir, but will be going on treatment soon, and will stop then.
All the very best to you.
According to the Leukemia and Lymphoma Society, unless one is post transplant, yoghurt is generally OK as long as the milk used in making it is pasteurized.
lls.org/managing-your-cance...
Are you neutropenic, have you been having problems with infections? I can possibly see a doc telling this subset of people to avoid fermented foods.
There was some thought that the "neutropenic diet" is needed in all immune suppressed patients, but more recent studies question the benefit unless one is severely suppressed, like stem cell transplant patients.
If the yoghurt or kefir isn't flavored with chemicals/sugar, if you have it plain with fruit or add a small amount of sweetener at home, it should be OK. I personally lived on it when taking ibrutinib, I had so many GI problems it was one of the few foods that did not run right through me. I bought plain and added vanilla, I use stevia extract or Manuka honey to sweeten. I rarely was neutropenic, though, I had a few bouts of it but more on the "very low normal" end. I also take prebiotics once a week or so, more than that and my gut overly reacts. If you try anything, ease into it.
Recent research points to gut bacteria health affecting overall immunity positively.
ncbi.nlm.nih.gov/pmc/articl...
frontiersin.org/articles/10...
Maybe discuss the aforementioned links with your doc? See what they say.
P.S. You can edit the title of your posts as well as add/delete to them. This site isn't like Instagram, where once it's out it can't be edited.
SofiaDeo
Thanks for your reply and information, most helpful. Also thanks about the editing which I have done. I felt a right plum when I realised!
Are you on any antibiotics because they can alter your gut microbe.
I have live Greek yogurt and haven’t had any issues. I got a kefir yogurt delivered by mistake so I tried but found the taste too strong for me.
Have a look at Tim Spector’s ZOE website for some useful information on gut health.
Colette
Thanks Colette.
I’m not on any antibiotics so all good there. I’ll have a look at the web site you have suggested👍
The Zoe you tube videos give lots of information about various aspects of this. All well researched and also tell you what is still in doubt.
Thank you I have been on Zoe since it started.
Me too. Paid a lot and also got my gut etc analyzed. Gut, no surprise, was good--have to watch sugar and fat. Again, no surprise but interestingly enough I can have olive oil without restraint. And nuts and peanut butter!
Thanks I wondered about having that done. I would be lost without olive oil so I try to eat a Mediterranean diet, but I know I don’t eat enough pulses.
Zoe is quite expensive and a lot of work to do but interesting. Not sure how one replies privately as not sure that the whole group wants to know about this. Eleanor
I have sent a message to you Eleanor so you can reply to that. Yes probably of only interest to those in the U.K.
There is such a lot of information out there about gut microbes now. I have just read an interesting article in the Telegraph about 6 beers that are good for gut health, apparently different fermentation. I don’t normally drink beer but as we are about to have an Indian Summer I might try.
Colette
Well done, I tried as soon as the tests were offered, but bailed out at the blue muffins. I think I had not been long on Acalabrutinib then. Not sure they are offered now😉
Since I developed a dairy allergy, I take a vegan probiotic vitamin every morning. My CLL doc hasn't batted an eye about it, and he keeps a list of what I take and he checks with me about it every visit.
W&W still and not neutropenic.
MisfitK
Can you advise on the vegan probiotic, I thought these were all dairy based? I’ve been thinking about changing my diet to a more vegetarian/vegan based. Thanks for your reply.
I take Yuve Vegan Probiotic Gummies - 1 per day (so I do a half dose per the bottle). I buy them on Amazon, but I think you can get them many places.
Sauerkraut, kimchi and any other fermented veggies of course are vegan probiotics. Easy to make and taste so good! Lots of on-line recipes
Natto is vegan and is wonderful. I mix a tablespoon/15cc in chili beans. It's the only soy product I eat. Edamame upsets my stomach, and I don't like the texture/flavor of tofu. I figure I also get soy in my chicken and eggs, when I don't purchase specific soy free ones.
I have been on venetoclax for several years now and have taken both live yogurt and kefir for the whole of the time. My blood results have always been good.
Greenhills26
Thanks for your reply. Given your response and that of others I think I’ll give it a go👍
Really interesting topic....whilst massive strides have been made in recent years, I'm certain there is so much more to learn about the role of gut health and mitochondria with regards to CLL. Afterall the mitochondria control the proliferation and apoptosis of cells.I feel its very important to eat a diet so we can become fat adapted (Mitochondria uses fat as fuel rather than glucose) by cutting out sugar as much as possible from our diets.
I culture live Kefir in a kilner jar. I have about 40g on my cereal every day. I'm sure it helps my immune system but obviously no evidence for that. I've never had any dide effects though. I add a desert spoon of Greek yoghurt to my cereal to make it taste less acid.
Hi. Weirdly I’m no good with some fermented foods etc. and that’s even trying to introduce them very slowly. Kefir, kombucha don’t suit! I get a “Suur” beetroot and ginger sauerkraut, and a “loving foods” turmeric and black pepper kimchi, from delivery people “Abel and Cole “. Because I’m coeliac I have to know things are gluten free, and I like that they are organic.
To be honest I think it’s the cabbage and mix of spices etc that do me more good.
I used to find that some fermented food gave me terrible stomach problems. It felt as though my CLL thought it was the enemy when I took live bacteria.
I now know that I’m far better with prebiotics - ie some of the best are onions, leeks, cabbage, mushrooms, as well as good olive oil and black pepper. I always feel better when I stick to my 30 diff veg, herbs spices a week. Eggs and almonds are my miracle foods ! I have a little grass fed butter, as read a few years ago that CLL attacks the butyrate producing micro biome.
I’ve been on venetoclax quite a while and I’m nowhere near as good at my good intentions whilst I’m on the treatment. I was religious about it all while I was in watch and wait! But the reality is that although I feel like rubbish when I go back to eating rubbish, there’s just times when I’m too tired!
I had your problem many years ago when I took evening primrose oil capsules! I used to be in a shop and look round and see who had bad wind, then suddenly realised it was me! Apparently it’s a side effect of some of the most famous oily supplements! I had to stop them lol!
The other thing to remember is to drink enough water! You can’t underestimate how much you need to drink when you are on Venetoclax!
I put a little of the sauerkraut and kimchi on the side of my plate, so that even if I’m not up to cooking from scratch, I get quite a variety of ingredients.
Good luck!
Lijep pozdrav svima! Vezano za kefir. Moj suprug je nakon kemoterapije (dijagnoza CLL) imao proljev koji nikako nije prestajao. Sve smo isprobali. Nije ništa pomoglo. Onda sam nabavila kefir i radila ga s pasteriziranim mlijekom. Nakon samo tjedan dana pijenja kefira, proljev je prestao. Imamo dobra iskustva s kefirom.
Hi Pecenka
Hvala na odgovoru. morao sam koristiti google prevoditelj i vjerovati da si hrvat? Dobro je pročitati, pomoglo je vašem mužu i nadam se da je dobro.
Bok! Da, ja sam iz Hrvatske. Suprugu je dijagnosticiran CLL prije 8 godina. Prije 4 godine liječen je FCR do ovog proljeća trajala je remisija. Sada se dogodio relaps i doktor želi još malo pričekati s ibrutinibom ili venetoklaksom. Inače, suprug ima visoki krvni tlak i ponekad ima aritmiju srca. Strah me kako će novi lijek djelovati na njega. On se dobro drži i nosi s time. Suprug ima 52 godine. Drago mi je da sam pronašla ovu stranicu i puno dobrih savjeta i riječi ohrabrenja. Pozdrav svima i neka vas sve skupa blagoslovi dragi Bog!
In general, the colon is a massive population of bacteria. If you sterilize the colon, you will get overgrowth with c. difficile; you can easily die from c. difficile, it's called pseudomembranous colitis, and sometimes results in colonic infection requiring removal of the colon. Probiotics are friendly and promote normal flora which prevents c. difficile infection.
The point is, your colon is normally populated by a massive number of bacteria.
Probiotic organisms consist of bifidobacterium and lactobacillus generally. These bacteria are your friend, as far as I know. I'm a lab physician.
ncbi.nlm.nih.gov/pmc/articl...
is a paper on ALL children, ALL treatment is quite a bit more toxic than CLL treatment, and ALL children did benefit from probiotic/prebiotic/postbiotic.
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
Probiotic bacteria suppress dangerous bacteria. I would think you want something like that.
It’s not yogurt but I often use a probiotic product called Colon Care by Raw Probiotics. It’s a 50 billion count refrigerated probiotic typically available in organic or health oriented grocers. It works really well. I’m on watch and wait though.
(Imbruvica), Ibrutinib, To live or to die
fish testing or lack of
V+O treatment 
starting W&W
Shingrix OK For Immunocompromised Adults
