Undiagnosed Episodic watery Diarrhea after Chemo (Bendamustine+ Gazyva

Hello everybody, sorry for the long post but i havent been able to get a diagnosis so far.

My dad was diagnosed with Non hodgkins lymphoma in 2019, He received chemotherapy and was cleared after 6 cycles of Ristova.

In jan 2023 there was a relapse, which was confirmed after he developed a pleural effusion around his right lung, It was tapped and sent for analysis but it didn’t have any traces of Non-Hodgkin lymphoma (NHL), afterwards the oncologist got a lump removed fron his armpit and sent for a biopsy which confirmed that the Non-Hodgkin lymphoma (NHL) had returned.

He started chemo again at the start of 2024, Bendamustine + Gazyva. 6 cycles, ending on 30 may 24. After the 4th cycle his Hb got down to 7.9 due to which he had to get multiple blood transfusions done. He got a total of 5 pack cells infused between 3rd April 2024 23rd May 2024. He got a pet scan which cleared him once again.

Coming to the problem he is having now, He started having diarrhea around the 4th cycle. The diarrhea is always watery and episodic. He gets watery diarrhea for about 5-6 days and then the stool turns pasty for a couple of days which then turns into constipation for another 3-4 days. After which the watery diarrhea starts again. He has to go to the toilet almost 15-20 times per day once the diarrhea starts.

During the diarrhea, he gets severely dehydrated due to which he has to get IV ringer infused to get electrolytes and hydration. This has been going on for about 4-5 months.

We have been to a lot of doctors, gastroenterologists & Myelodysplastic syndrome (MDS) mostly. He also had a colonoscopy and an endoscopy which were both clear, the biopsies for both were clear as well. Stool examinations, calprotectin and all other tests were normal.

He was given somatostatin, vancomycin, flagyl, omeprazole etc but these episodes continued.

Recently he had an infection which caused shivering and severe cramps in his legs and low blood pressure. He was treated for those in a hospital. This time his electrolytes were very low, also his albumin levels got low, all the fluids and electrolytes were replaced and we left the hospital with the diarrhea still being un resolved.

Another doctor suggested this might be bile acid diarrhea and started cholestyramine sachets.

At this point, he is taking 4 sachets of cholestyramine per day(2+2) with imodium. The latest update is that he is feeling a lot of weakness and his body temp is upto 100.5f. Right now he is constipated and we dont know if the Cholestyrimine sachets are working or is the diarrhea going to come back.

His latest pet scan a week ago of neck, chest, abdomen and pelvis show that some lymph nodes are still present. Also a new pleural effusion was seen around the left lung. But no biopsies have been done and he was in complete metabolic remission on the PET scan done in april.

From all the things you’ve read above do you have any idea what the actual problem might be? Right now, we have heard following diagnosis, chemo induced diarrhea, bile acid diarrhea, diarrhea due to remnants of Non-Hodgkin lymphoma (NHL), diarrhea due to large intestine lining being damaged.

Please help if you have anything that might make a difference. Any insight will be highly appreciated.

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Hi @Ash1 thanks for your comprehensive post and taking the time to write it.
It must be so powerless, difficult, frustrating and scary etc for you not being able to find your dad a diagnosis and better.
I can understand, but not imagine what it is like for you
Unfortunately we do not have medical knowledge and do not know your dad’s whole medical history and we are unable to give diagnosis, we can only share our experiences.
All I can suggest is asking his medical team if they can refer your dad to anyone that might be able to help or what is the next step is.
I wish you both the best, really look after yourselves and please do let us know how you get on.

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Dear @Ash1,

Gosh I am so sorry to read what your poor Dad has been going through. This must be absolutely miserable for him!

I want to just touch on the fact you mention that your dad is currently feverish? Do you have a helpline or 24hour phone line for the team? It would be important to make them aware of these current symptoms, with the temperature now a factor we would be worried about possible infection. Especially as it sounds like he is still quite vulnerable with his low blood counts.

Finding a cause for the diarrhoea sounds like it is proving to be a challenge. We would be very happy to support you and perhaps talk through some other possible options to help, we can possibly look at what other options/services there may be near to you. If you wanted to call or email us, our contact details are attached here - How to contact Blood Cancer UK | Blood Cancer UK

Best Wishes,
Heidi J (Support Services Nurse) .

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Evening @Ash1
Sorry to hear that your Dad is struggling with this. I also have FNHL. My treatment was a little different RCHOP but I think the treatments can all be a bit harsh on our body.
I did suffer with various upset tummies during my treatment but my consultant always wanted to know about it, in fact I’d say it was one of her first questions at every appointment. It was always a side effect of the harsh treatment playing havoc with my digestive system which has remained with me.
Like @Heidi-J-BloodCancerUK it is important to seek advice from your Dad’s medical team. My doctor was always keen to keep on top of any symptoms.
Do hope he is on the mend soon.

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