Still struggling with diarrhea post chemo

Hi, I finished my 6 rounds of chemo 7 weeks ago. I had 3 rounds of EC and then 3 rounds of Docetaxol. The docetaxol in particular gave me really bad diarrhea after the 1st round and then for the next 2 rounds they reduced the dose which helped.

Im eating what I think is a good, varied diet bit I’m really struggling with bouts of diarrhea that seem to come out of nowhere. My oncologist has said it will take time for my stomach to recover but just wondering if anyone had been through the same and had any tips on what might help?

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I have got IBS now which started after chemo in 2018/9 and also was on Letrozole so that may be why. I had tests done and nothing else was found. I was fine before treatment. I got cancer again last year had chemo and Phesgo and it’s still there now. I am on Exemestane now for life probably. I get Immodium from the GP and take that when needed. You could mention it to the BCN or GP if it continues. I did leave it a while before going to the GP which I shouldn’t have done as it could have been cancer but got referred on the 2 week wait for a colonoscopy after having other tests.

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I still have diarrhea too. The only treatment I’m still having is Phesgo, which also causes diarrhea. I’ve mentioned it to my GP and she said no point referring me to gastroenterology until 3 months after finishing Phesgo. Then if I still have it she will refer me to see if it’s become a permanent feature.
I try to manage without immodium as much as possible. Definitely some foods aggravate it. My tummy is always loose since chemo. Some days it’s also very urgent and explosive.
Important to drink water and stay hydrated .
Wishing you all the best x

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Hi @jayesse we seem to be having the the same problems, nails and bowels! I also still have problems wirh diarrhoea after eating certain foods, but i cant always tell what is going to upset me. Just had a nasty bout after my last phesgo, but only two more of those to go so i’ m hoping things will improve after that. Its annoying because its often unpredictable - i can eat the same meal twice and one day i will be ok and the other i wont. Sometimes its just because i eat too much! I should try and be less greedy.
Penny

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Hi all
Please can I turn you on to homemade Kefir. You can order the starter from Amazon or Etsy and make it with whole organic milk. It’s the easiest thing to make and since I started it my diarrhoea has been so managed! I use it in overnight oats, it’s an acquired taste but now I can take shots of it too! It was a game changer for my diarrhoea and now I notice when I don’t have it .

(https://youtu.be/aBkDuRHRzNA)

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Hi @Soobs, this was a problem for me too that took ages to resolve. Like others here I had 18 doses of Phesgo and hoped it would improve after that but it didn’t much. By then I was taking daily letrozole, so I blamed that. Originally I’d had 3 rounds of EC and then 4 of docetaxel. I am afraid I lived on loperamide capsules and didn’t venture too far from a toilet for many months. However my oncologist switched me from letrozole to anastrozole and I seem to be doing far better on that. Keep going back to the doctor. It’s definitely sortable.

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Hi @soobs

I too had horrible diarrhoea on chemo and it didn’t clear up at the end of treatment. I was also not absorbing food (pale floating poohs) -sorry for the graphic details. Eventually I scoured the internet and found a study on latent coeliac disease being worsened by chemo. Lo and behold a gluten free diet cured it and I was diagnosed as coeliac.

In my opinion it is always worth asking your gp to check for autoimmune disorders if you are not recovering from chemo. With my first chemo encounter it was hypothyroidism that came to the fore.

It is easy to attribute everything to chemo/radiotherapy/medication. Other things can be ruled out with a blood test and always worth asking for.

Hope you are feeling better soon. All the best to you all

Eily xxx

Great advice from everybody. It seems to be a common problem. I think it was a well fermented kefir that set me off this time, maybe to potent for my system. I eat Fage live yoghurt most days. Its difficult to know whilst you are still in treatment such as Phesgo that it is entirely due to that, so i will have to see how things progress after i have finished. I suspect it will take some time. I’m not on any hormone treatments. Like you @suedot i had constant diarrhoea and lived on loperamidefor months whilst on paclitaxol and thank goodness that phase is over. I wouldjust like things to be abit more settled…
Penny

@Linda_Corinne thanks, im going to mention to the BCN and also the doctor as well

@jayesse so I have been on Phesgo but nothing at the moment as I’ve been through a lumpectomy which they need to do again x

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@pennyp nails was going to be my next post :roll_eyes: but I’ve found another thread covering that. Interesting about the eating too much.

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Like many I had diarrhea issues during TCHP 6 cycles 3 weeks apart. On the last cycle, diarrhea started the day after. I put up with it like usual and used loperimide but on day 5, I found that I was loosing more fluid than I could taking in.

So, I went the the nearest hospital for I/v fluids, I was away on holiday. I could see this was a bad situation, I had to travel home wearing big pads.

So I went straight to my hospital A&e near home. I was given more fluids I/v and blood and faecal sames were given. Quickly they determined I was suffering from clotridoides difficile colitis. I had 6 nights in hospital and received vancomycin for 10 days.

The problem didn’t completely resolve. Unfortunately I waited a few days and then I was back in hosp for another 6 nights. The next treatment was 14 days of vancomycin and 5 days of metronidazole. I recovered however I suffered another recurrence 5 days later, recurrence is a characteristic of c.diff.

This time, I went straight to A&E in day one. The hospital stay was 4 nights. I was prescribed vanco to go home with, my electrolytes were topped up too.

By this stage, with chemo and diarrhea effects, I had lost about 17kg, reducing me to 57 KG body weight.

As it stands now, recurrences are the problem. Antibiotics clear the infection and beneficial gut flora but not the spores which cause the recurrence. The recurrence can get away in the absence of normal flora.

Apparently the next line of treatment is a Faecal Microbiota Transplant FMT from a donor. To avoid ending up back in hosp with c.diff, there isn’t much option other than accept the FMT from the hospital microbiology department. It’s quite a big thing (idea) to cope with but if that gives my colon a chance, before it’s ruined and has to be removed, it’s a small matter to contend with and so the colonoscopy and transplant will go ahead in about 2 weeks. We expect this and a timely antibiotic treatment, to arrest this dreadful bacterial infection which was oppertunistic due to the chemo effects.

During this current Antibiotic regime, I had breast surgery one week ago, a bilateral therapeutic mamoplasty. The right side was affected by BC and the left side was reduced to match the right side. Right side had the original lump removed, 2 lymph nodes removed through the lumpectomy incision and also a larger area of calcifications were removed. The surgeon did a fab job creating Wise Pattern incusions on both boobs. It’s healing well with no pain. I was in hosp for 2 nights and had nothing draining at the op site. I am now one week after surgery and dressings ( which look like flexible cellotape) come off in one week.

So chemo, c.diff and surgery has been a lot to cope with but I have made it out the other side. After the FMT, I still have radiation and 3 weekly Trastuzamab until the end of the year.

I wish you all every success, stay strong and and enjoy what you can. Thank you for this forum, it has been an enormous help.
I live in New Zealand.

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Oh @glowinthedark5 that is such an awful saga. Such a viscous circle of needing antibiotics to cure the infection while at the same time they predispose you to a recurrence. I just wish there was a ‘fast forward’ button so that you can quickly get to the stage of looking back and wondering how you got through it all. Glad the surgery sounds like it went well. I hope the rest of your treatment does too.

Wishing you good healing, and stay strong

Eily xxx
PS I’m a kiwi too, currently ‘exiled’ in North Wales :grin:

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