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  #1  
Old Wed Jun 18, 2014, 08:09 AM
Marlene Marlene is offline
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Gut bacteria connection to SCT survival

Here's an interesting observation on the connection of gut bacteria and outcomes of SCT.

http://www.sciencedaily.com/releases...0617112226.htm
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #2  
Old Wed Jun 18, 2014, 10:12 AM
Whizbang Whizbang is offline
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Very interesting... Thank God for my cast iron stomach...
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  #3  
Old Wed Jun 18, 2014, 11:47 AM
Neil Cuadra Neil Cuadra is offline
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The question is what should be done to take advantage of the benefits that the study suggests exist. Study author Dr. Ying Taur (from New York's Memorial Sloan Kettering Cancer Center) says:
One possible strategy is to find ways to perform transplants in a manner that minimizes damage to the gut microbiota. Another approach would be to replenish the gut with beneficial microbes that are lost after this procedure is performed.
And of course to push for further research.
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  #4  
Old Wed Jun 18, 2014, 12:53 PM
Marlene Marlene is offline
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Well.....not a very glamorous approach, but they have been using "fecal transplants" to help those who suffer with c-diff. Which also affects those undergoing treatment for bone marrow failures.

http://www.sciencedaily.com/releases...0617093814.htm

I don't know how they can minimize the destruction of the good gut bacteria since all the meds destroy/disrupt the gut.

I too would like to see further research since gut flora is key to overall health and restoring that will go long way for everyones healing.

I would think, at a minimum, they could start using probiotics before and after to help it along. But then I also think they should bring everyone up to an optimal nutrient status prior to treatments.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #5  
Old Wed Jun 18, 2014, 01:07 PM
sbk007 sbk007 is offline
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Marlene, I was told by my gastro Doc to eat yogurt everyday. Don't matter the brand or flavor or type. Then he suggested a pro-biotic called Florastor. I didn't take well to the probiotic(bloated me) but I eat yogurt everyday and it does make a difference digestion wise. It restored regularity for me (I think) unless coincidently it resolved itself on its own but I don't think so. I might try a different probiotic as I heard the yeast containing probiotics can make matters worse for some but then again I only tried it once so I might try florastor again just for good measure. Any type of chemo can mess with your gut flora so I was told. I should add that I only visited the gastro guy once for a colonoscopy..He didn't find anything so recommended the yogurt & probiotics.
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  #6  
Old Wed Jun 18, 2014, 01:21 PM
Marlene Marlene is offline
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sbk007...I know quite a few people who have been helped by eating yogurt. I used to eat it lot but daily dairy causes me too much congestion. So we alternate between good probiotics and naturally fermented vegetables. Many swear by a drink called kefir also. It's best if you can go with the plain vs flavors to avoid the sugars though.

Adding in too much can cause discomfort until your body rebalances. So it's good you backed off. It can take time to find one that's right for your body. Glad you found a solution.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #7  
Old Wed Jun 18, 2014, 05:52 PM
sbk007 sbk007 is offline
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I make dressing out of plain yogurt. Add some grated cucumber, a little garlic, a touch of lemon juice and its really good. Its called tsziki sauce I think but not sure. Both the Greek yogurt and regular yogurt contain the same 5 bacterium or cultures from what I can see. Its good, it works, I use it
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  #8  
Old Wed Jun 18, 2014, 05:57 PM
bailie bailie is offline
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Any oatmeal? I have eaten a huge bowl of oatmeal every morning for the last 15 years. I have been wondering how that will sit following transplant? I guess it probably just depends on the person.
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  #9  
Old Thu Jun 19, 2014, 04:23 AM
Cheryl C Cheryl C is offline
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I read somewhere when I was first diagnosed with MDS that quite apart from chemo, probiotics were important. I try to remember to take a capsule at least once a week. Dairy doesn't suit me either but you can buy non-dairy varieties. Miso is also good.
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  #10  
Old Thu Jun 19, 2014, 08:10 AM
Marlene Marlene is offline
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sbk007....Yes, one of my favorite ways to eat yogurt. The garlic is also good at killing the bad stuff. If you like fennel, you may want to try this fennel salad: Thinly sliced fennel bulb; dressing - yogurt , splash of apple cider vinegar, garlic, dill, salt to taste.

Hi Cherly....we use miso too. I will add in some mild kimchee to the soup for the added kick.

Bailie...Finding what you can tolerate/like during and after transplant can be a challenge. John got so picky he could only drink certain brands of bottled water. Same with ginger ale.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #11  
Old Thu Jun 19, 2014, 01:26 PM
Lbrown Lbrown is offline
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Thanks for posting that article Marlene.

There's a lot of research going on with the gut microbiome these days. A popular theory is that lack of diversity leads to immune system and chronic disease. Maybe some day they'll figure out a prevention or cure for these diseases by tweaking the gut bugs.

I had my gut microbiome tested and interestingly, was found to have a very low diversity compared to the average person who tested. I have been adding probiotics, fermented food and a prebiotic (in the form of uncooked potato starch), and also green juice in an effort to heal the gut. Maybe some day it will have an effect on my blood disorder too.

Deb
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  #12  
Old Thu Jun 19, 2014, 02:59 PM
Relentless Against SAA Relentless Against SAA is offline
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Low ANC and Yogart

Is yogurt with active cultures safe for someone who is neutropenic? Does it depend on the level of the ANC?
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  #13  
Old Thu Jun 19, 2014, 04:31 PM
Marlene Marlene is offline
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Hi Deb,

I was wondering about the outcome of the testing you did. So do you see any improvements since adding the fermented foods and probiotics?


Relentless - John ate yogurt as well as fresh vegetables and fruit when he was neutropenic. We would really wash them and the yogurt was pasteurized.

Here's a link that talks about the value, or lack of value, of a neutropenic diet. The focus should be more on safe food handling practices.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228185/
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #14  
Old Thu Jun 19, 2014, 08:12 PM
Relentless Against SAA Relentless Against SAA is offline
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Thanks Marlene
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  #15  
Old Thu Jun 26, 2014, 12:48 PM
Lbrown Lbrown is offline
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Hi Marlene,

Sorry for the late reply, I should subscribe to this thread.

I had my microbiome tested through American Gut. My results were way different from the average. I basically had bacteroidetes, firmicutes and not much else. However, I don't know how accurate the testing is. I saw one report of someone who tested through 2 different companies - same time, same sample, and got 2 different results.

I am on a treatment that strengthens my immune system, and because of it, I feel worse than I normally would, and things that might not affect someone else seem to affect me a lot. So when I went whole-hog on yogurt, fermented foods, and potato starch, I really felt it in the way of extra symptoms like fatigue.

I had to quit that for awhile because I started getting mouth ulcers so bad all winter. They are only now calming down. Yogurt really burned and I had a hard time eating with so many ulcers, 3 or 4 at a time all at once. Then when they'd go away, new ones would come up. Eventually someone told me about a product called canker-rid and that is the only thing that worked on them (bee propolis in alcohol).

The effect I had with potato starch was the best. It really helped me sleep like a log, I have not slept this well in years. I used to mix it with the yogurt. It is high in resistant starch which is a type of fiber that feeds your gut bacteria. Anyway, now I am drinking 2c green juice a day with 1T raw uncooked potato starch in it. My gut seems to be improving too, for the most part, I don't get diarrhea anymore even with taking exjade, unless I eat something I shouldn't. Figuring out what that is is sometimes a challenge.

My skin feels amazing (from the juicing), and my dr thinks I am doing great, but my blood counts are still pretty bad. Last time my platelets were 21 and WBC was 0.6 with Neuts at 0.2. I am still going for red cell transfusions.

I have never been told I should eat a neutropenic diet, and this year we are growing a load of veg in the back yard. The hematologist gave me famvir for the mouth ulcers but by the time I got that, the canker-rid had worked so I didn't bother.

Deb
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  #16  
Old Fri Jun 27, 2014, 09:52 AM
Marlene Marlene is offline
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Thanks Deb. I really believe your body prioritizes what it chooses to heal first. So hopefully, as things start to improve overall, your bone marrow will follow.

I have not heard about the use of potato starch. I'll have to look into that. Glad you are having such a good response with it. It's so complicated and at this point, still a hit and miss approach to find what works. It's so individualized.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #17  
Old Fri Jun 27, 2014, 11:16 AM
Lbrown Lbrown is offline
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Hi Marlene,

Resistant starch was discovered in the 1980s I believe. There are a lot of studies on it on Pubmed. I did a lot of research which convinced me and my nurse friend it was a good thing to try. Uncooked raw potato starch is an easy way to get it. If you google potato starch, you'll no doubt find the main website where everybody is trying it. It supposedly has good effects on blood glucose and improved quality of sleep. I can vouch for the sleep, after years of insomnia.

I also think the juice is helping because of the nutrients, and because of my gut problems with wheat I don't think I was absorbing enough nutrients. Also, it is hard to have a diet good enough to get the nutrients you need. Hopefully as my gut heals, other things will follow along.

Deb
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  #18  
Old Fri Jun 27, 2014, 08:56 PM
Chirley Chirley is offline
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I know this is off topic but it's pertinent to me. A year or two a go my dog was having dreadful bowel problems. Constipation, diarrhoea, pain, bouts of bleeding...the vet hospitalised her and tried numerous things with no effect. I became so desperate I tried one of those paid online holistic vet sites..I was advised to give her nothing but mashed potato made with pet milk for a week and a dog vitamin. Then introduce cooked lamb..see how she went, then cooked beef etc. Well, she has not looked back. Her bowel settled down within three days on the mashed potato. I've learnt that as long as I steer away from any poultry and to revert back to potato at the first sign of any problems that she remains well.

Maybe the potato starch would have the same effect.
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  #19  
Old Fri Jun 27, 2014, 09:21 PM
Lbrown Lbrown is offline
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Hi Chirley,

Cooked and cooled potato (even reheated) is a good source of resistant starch.

Glad to hear about your dog.

Deb
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  #20  
Old Sat Jun 28, 2014, 09:08 AM
Marlene Marlene is offline
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I just read about the cooked, cooled potatoes as a source. Very interesting.

Thanks again...M
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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