Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 I've been bothered by intractable diarrhea for over 2 months now. In those 60+ days, I've had exactly two days without totally watery diarrhea. I am in the CAL-101, 200 mg daily trial. The principal investigator is unaware of any link between CAL-101 and this terrible diarrhea, and/or Richter's. I've approached this problem (which started out without pain or enlarged nodes) as a gastric problem, such an infection or IBS or something similar. Cultures, blood cultures, blood numbers, multiple MRIs, colonoscopy, endoscopy, and so on, have found exactly zero problems. Which is big, worrisome problem. Through a process of elimination, we've decided that a PET/CT scan and perhaps biopsy for Richter's is in order. I am at high risk for Richter's. My first huge mistake that increased my risk terribly was to do FCR, convinced partly on what Dr. Hamblin has written, in glowing terms, about the drug, as well as MD , whose staff seemingly is still love sick with the harmful regime. I also am male, young (48) at diagnosis, 11q del, unmutated, large abdominal nodes, etc. etc. So Richter's is a very real possibility. My concern is that my approach to this problem is totally scattershot, careening from stool cultures, to hospitalization for blood cultures, MRIs, lymph node palpation (multiple times) and so on. Is there some better way to approach this? When one suspects Richter's, is there a consensus 'best practice' to rule in things and out other things? And has anyone gone through the unceasing, unrelenting, pure liquid diarrhea with or without Richter's? Thanks for any help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 : Consider that you may have contracted MRSA in the hospital. My daughter got MRSA from the hospital back in 2009. One of the main symptoms is diarrhea such as you have described. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 , have they totally tested for CDiff. clostridium Difficile.. an opportunistic infection that sometimes gets to immune comp patients, especially when, in hospital environments, or undergoing therapy, surgery etc, and when they've been on prophylactic antibiotics. One of the major hallmarks is ongoing watery stool, with no let up. three or four movements a day. apparently it's not 'easy' to detect with one or two stool samples in some cases. the sample MUST be watery, so I've been told. This would be my first step, re do any tests for that before jumping to Richters... C Diff, is treatable, tho perhaps not easily and also should not be ignored. here's a link from Wikipedia, basic info, including several testing methods which can be used. http://en.wikipedia.org/wiki/Clostridium_difficile don't assume that you would need to have ALL of the presenting symptoms as there are varieties in this as well. Even if stool sample was negative, you may want to discuss this with an infectious disease person, or whomever would handle the testing so that you can rule this out before leaving it behind. Untreated this can be serious. I say this because you mention that your symptoms have not been relieved. wishing you well, Beth Fillman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Chronic C.Diff can be difficult to treat. Recently here in Canada they have had very good success with fecal transplants. Basically, an infusion into the bowel of freshly cultured mix of bowel bacteria, or infusion of filtered, complete, healthy human fecal bacteria from a donor. The work in Canada is being done by Dr. Tom Louie and is currently in clinical trials in Toronto http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3060180/ more http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2660798/ If this proves to be your problem you may wish to follow up on this procedure that has over a 90% cure rate ~chris Quote Link to comment Share on other sites More sharing options...
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