Well I'm 6 months post treatment with O&V and all going well. I recently had a review with my consultant and she has taken me off the antibiotics Co-Trimoxazole which I was taking morning and night on Mon Wed and Fri. I was on these throughout the year of treatment and for 6 months after finishing V.
Before diagnosis I regularly took probiotics and Kefir to boost the good bacteria in the gut. I do think a healthy gut biome is important for so many aspects of health. There was little point in taking them while on antibiotics and it could have been dangerous when I was neutropenic, but now I am off them and my neutrophils stable I would like to start probiotics again.
I just want to know if its safe to start taking them again. I have been trying to get an answer from the CNS team and/or my consultant but nothing is coming back (no great surprise there) so I am just posting to see if any of you clever and well informed lot know the answer.
Love to get your thoughts. Hope you are all well. I am typing this while watching the build up to our Queens funeral, such an amazing woman, we will all miss her.
Bets wishes Patrick
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IDK why you though taking them while on antibiotics was contraindicated, some docs *start* patients on them to minimize gut effects while on the antibiotics. There is some controversy about their use, however, and it doesn't seem like there is a hard "take them" or not:
There is discussion regarding the "neutropenic diet" avoiding *harmful* bacteria, but not "good/helpful" bacteria. Live youghurts (this would include kefir) are included in the food recommendations:
So unless you have some other medical problems where certain foods aren't great, there shouldn't be a problem.
I personally continue to eat youghurt and drink kefir regardless of whether or not I am taking an antibiotic. I get organic, grass fed, plain (no sugars or jelly or chemical flavorings, even if the chemical flavoring is "natural") whole milk brands. I haven't ever had my neutrophils go below Grade 1 toxicity, however.
thanks that's so helpful and good to know. I will read the links you kindly included tonight. Very happy to start taking them again. Best wishes. Patrick
I am a believer in the importance of our gut microbiom, as a vitally beneficial influence on our general health, and bolstering our immune system. Like you, I take pre/probiotics regularly. Not in tablet form, but get them from my diet , including yogurt and kefir, all organic.
Thank you so much for this useful post, Sofia. I am keeping all the links!
Thank you - yes I am not keen to go down the tablet route. I think we have all had enough of tablets for the time being!! I am going to get making my own kefir again as I used to do before CLL. I Appreciate your reply. All best P
I never took it regularly but when i had occasional UTI, i would take them for a week with another remedy . During chemo my oncologist said NO. It cleans out gut and can interfere with chemo. I never took it again.
It has been controversal. Maybe better to try foods as suggested. I would also have your oncologist & gastroenterologist consult with each other.
My first CLL specialist warned me to be very careful with supplements as some tend to help your cancer more than you. She said, for example, eat as much fish as you want but don’t take fish oil. So I eat yogurt with live cultures everyday but do not take probiotics.
If I desire to take a particular supplement, I check with my CLL specialist first.
This is an interesting question. Many holistic docs (even those who are MDs) say to stay away from Dairy with Lymphoma. So I am not sure about the yogurt thing! Likewise they say probiotics should be in conjunction with Pre-biotics. There is a product called "athletic greens" AG1 that is getting huge aclaims - and you can get your pro and pre along with greens for the day. Just a thought.
I have done reading on this after your post. There may a difference between eating low fat dairy products versus dairy products with lots of fat.
I have to drink milk to manage acid reflux - I can’t take the normal meds prescribed for this condition. But I drink non-fat milk and eat Greek yogurt with no added sugar.
The dairy fat is of particular importance once you start treatment which I’m about to do.
Wow! That’s a loaded beverage powder! Vitamins, the works!
Very interesting providing individual ingredients don’t pose any counter issues with CLL/treatments, or other individual considerations (I wonder if they’ve been able to make the spirulina taste good…love what it does, but it is just blech!).
And, as one-stop-shop solution, the cost of this action-packed supplement vs the total cost of individual supplements that people typically pull together would be intriguing to calculate.
Synbiotic products (combination prebiotics and probiotics ) are surfacing in the marketplace more and more these days as it is the recommendation to combine both for active and balanced effectiveness….caveat emptor.
Whole food combinations would be our preference over derivative supplementation, however the convenience factor of synbiotic products can’t be denied.
And, the dairy thing…. Probiotics are high in fermented foods too so perhaps mixing it up to keep dairy consumption in check is a solution.
I take a daily teaspoon of probiotics. It consists of home made sour cream. My gut microbiome is well used to this mix of bacteria as I have been taking this sour cream for the last three plus years. One thing to consider is that during the process of souring, the bacteria that is native to the cream kills all other bacterial types which could be considered Invaders and not in their usual habitat. Therefore it is like sterilizing the cream you are souring at home. The current little buggers are the umpteenth generation of the original strain that I used to start the culture years ago. Another thing to consider. It's important to create a hospitable environment for these symbiotic helpers. Therefore our diet matters a lot.
As long as your neutrophils are high enough. If not, there is a greater risk of bacterial infection, witness adverse events in clinical trials. Written guidance from my haematology unit, while I was on treatment, was no live yoghurt /probiotics, along with no raw seafood etc. Since completing treatment (2-1/2 years ago now) I made my own choices. I resumed live yoghurt with neutrophils around 1.5.
Thats helpful thank you. Neuts are now around 1.8 so that should be ok. I used to make my own milk Kefir so its time to get that started again. Thanks for taking the trouble to reply. All best. P
I take yogurt (plain, non fat, drained of liquid ) and unpasteurized apple cider vinegar, small amount of cheddar cheese. No adverse effects. CBC and CMP normal, no digestive complaints.
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