Stomach issues & severe weightloss
Hi all,
I’m hoping that one of you has had similar issues as my doctors seem stumped.
I was initially diagnosed in 2011 and had a double mastectomy and chemo.
In 2019 I was diagnosed with metastatic cancer in my bones and lungs. I was on Ibrance and Faslodex for almost 4 years. I gained 20 lbs due to the swelling in my legs and arms. When I stopped the Faslodex I lost the 20 lbs.
In July 2023 I started on Orserdu. Like many I had stomach upset issues but managed to figure out how to take it. I also had no appetite. I noticed that I was losing a few pounds and attributed it to the estrogen blocking.
In late May 2024 I had a stomach virus and diarrhea for 3 days which was unusual. In early June I started having diarrhea a few times a week. I shared this with my oncologist and we noted more weightloss. By July 10th I was having diarrhea every other day and my oncologist took me off the Orserdu and I engaged my GI doc.
Fast forward it’s November and I’ve had multiple tests for intestinal infections and a colonoscopy, and everything is fine. I’ve lost 20 lbs since June and have diarrhea almost daily. I’m scheduled for an endoscopy next week, but I’m concerned that if it doesn’t show any issues then what is the next step.
I’ve had to cancel multiple vacations and have had to stay close to home for months now. Appreciate any thoughts or suggestions.
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@cms2011, you have my sympathies. I also have weight loss issues - onc team don't think mine is related to my MBC as I have had this issue occur twice before over the past 20 years. I agree with them - I suspect it is another nasty that has been overlooked because of MBC. I do not have the big D - just no appetite. So far I have lost 60 kg in 16 months. Onset is always the same - 5 days of not being able to eat, lots of mucous coughed up. Then a very gentle return to eating a little amount. I still can't open a bottle of alcohol without feeling physically ill. So I haven't had a drink in 16 months - and I was only a social drinker. Drs in the beginning thought it was good I was losing weight, even though I told them that this thing - whatever it is, could last a while, they were not concerned. Now they are starting to get concerned. After the outcome of upcoming mammograms/us I may ask for biopsies including bone and bone marrow samples to at least rule out my suspicions.
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Have either of you been tested for C-Diff? It is an opportunistic overgrowth of bad gut bacteria. It is fairly common in the elderly and those with compromised immune systems. Relatively straightforward to treat with an antibiotic called Vancomycin.
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Thank you for the suggestion @trishyla1, I will mention it to my GP during the next visit. Although I have had a number of antibiotics it is still with me. I checked the Mayo site - it appears the only symptoms I have that are consistent with C-diff are loss of appetite and weight loss. Any number of scans have shown that gut is normal - no inflammation etc. Can't hurt to test for it and if it solves the issue that would be great. Many thanks😀
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Antibiotics are one of the leading causes of C-Diff. Strong antibiotics can kill good gut bacteria, which allows the bad bacteria to grow out of control. Mine was caused by Clindamycin, which was prescribed for a dental infection. Only Vancomycin kills enough C-Diff so the good bacteria can reformulated your intestines.
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@malleemiss251 thanks for sharing. I hope that they find out what is causing your weight loss soon. I agree that the oncologist didn't seem to be concerned about weight loss until I raised the issue.
@trishyla1 yes I was tested for C-diff and it was negative.
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Glad to hear that, cms2011. I had it for over a year and it was a nightmare. Good luck. I hope you can find some relief.
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Maleemiss and Cms
Have either of you tried a digestive enzymes supplement? We hear little of them but I have a great pharmacist that likes natural options. They are like Lactaid for those that can't drink milk. Find them in the store together. This stuff gas helped me lots over the years. Ask Google " digestive enzymes treat lack of appetite". I hope it helps you both.
Trishyla, interesting about the C-diff. I'll keep it in mind.
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@gailmary, thank you for the suggestion. I will look into it - I suspect that if the issue doesn't self resolve soon I will be sent for a lot of tests - sigh. I will do anything I can to try to avoid them.
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Try getting checked for Crohn's disease. I have the same issues.
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