Its a long story. I started a post last night about my battle with stomach problems but deleted it because I didn’t have time to tell the whole story. I have all my kids in for thanksgiving and can’t find the time to do a full post. I want to catch people up on my treatment changes as it might be helpful to others. I should have time after the kids leave.
The short story is that I have struggled with stomach pain for 6 months we thought was related to venetoclax, and maybe it was. The real culprit turned out to be a bug called h pylori. Did venetoclax lower my immunity and allow the bug in? Who knows.
I’m treating for the infection and doing much better now. They will do a scope Monday to see if I have an ulcer and rule out the “big bad uglies” as my gastroenterologist calls them. I am thinking the fact I am responding to the antibiotics is a good sign.
I don’t plan on being compliant with my diet in the meantime. It will be roast turkey, fried turkey, boudin balls, pork roast, green bean casserole and yams topped with marshmallows tomorrow, washed down with lots of vino.
I think I will be fine Friday, Saturday and Sunday, thanks to my week-end immune system. 😎
Thanks to all who sent positive waves. I’m feeling much better and would have broken 80 today but for a double bogey on 18.
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cajunjeff
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So glad to hear about your family and weekend plans!:). Sorry you’ve had gastro issues and it’s a positive that you’re having a scope. I also have them and have for months that come and go and no one can figure it out yet. I’ve been advised to have a scope as well. Let us know how it goes. Looking forward to your lengthier post. Happy Thanksgiving and weekend !
H.pylori is pretty endemic, it's estimated 2/3 of the population has been exposed to it/carry it. IMO if us immune compromised folk have problems with it, it's more of an opportunistic thing. Whether the Venclexta or the fact of your CLL is the bigger contributor is a tossup, since many normal immune folk get it.
Glad you are feeling better, and that there's progress!!
FWIW, the patients I recall who got difficult to treat infections were Type A super stressed out working 24/7 personality types, or folk with multiple disease problems, which CLL would be one of. I imagine the emotional stressors of the past few years will contribute to an overall increase of H.pylori. Most folk with it aren't necessarily treated, I am glad your docs figured out that "your particular baseline level" of it was causing the stomach problems. Like we all have Candida on our skin, and sometimes it overgrows. Kids are usually the group that needs treatment.
My stomach problems started very soon after I started venetoclax. And venetoclax clearly caused me to be neutropenic. It’s therefore reasonable to assume venetoclax and my cll made me more prone to an opportunistic infection.
I will never know for sure. I was willing to get back on venetoclax. My doctor said that between the neutropenia and the h pylori infection, along with the fact I was doing well on calquence monotherapy, that I should just stay on calquence alone.
I did want to go for a drug free remission that venetoclax might have gotten for me. But I think my doctor is right and that for me, at this moment in time, calquence monotherapy is best.
I did get relief from my stomach pain about four days into the double antibiotic therapy I was on so it appears h pylori is at least partially responsible for my pain. I’m on prescription strength nexium type drug now and it helps.
I had lost a lot of weight and had zero appetite. I’m not 100% back, but I’m way better. We will see what the scope reveals. H pylori is known to cause ulcers and the scope should at least rule that in or out.
Maybe your doc will consider a lower dose Venclexta at some point if you are preferring a double therapy to stamp the CLL down. I agree that the Venclexta probably contributed in some way, if not by direct tissue irritation then by neutrophil suppression. The molecule itself is neutral, so shouldn't affect stomach pH directly.
If you happen to have been prescribed metronidazole, remember the alcohol warning! You can't drink while taking it. I forgot once and had a single glass of wine at dinner once while on it, and was sick/vomiting all night, ugh.
I have had two bouts of H pylori spread across 10 years. The first time, I did the 1 month antibiotic course.
The second time, I did not want to take the antibiotic course for a month. I took DGL (liquorice) and a teaspoon of organic Manuka Honey for a month, redid the H pylori rest, and it was gone.
Given our condition, I don’t recommend not taking antibiotics, but perhaps adding this to the diet may help heal faster????
Except when neutropenic. Live probiotics and fermented foods are generally good, but in the immune suppressed there's some concern that they aren't optimal. If for no other reason, than the body has to expend energy tamping down growth instead of making more neutrophils/killing CLL.
Fourth paragraph says it all!! Looks like you are getting better. Take care and enjoy. But thanks for posting of your troubles. Something else for us all to think about. Take care
Hi Cajunjeff, my husband had h pylori. apparently had had it for years. He took tablets for several weeks, and it went and hasn't come back. And his general gut health now is much better. I hope it is the same for you
I'll deal with the important stuff first--congrats on almost breaking 80! Keep at it, and you'll get there. And thanks to you and all the other dedicated folks on this site who bring knowledge and comfort to their fellow travelers. You are greatly appreciated! Happy Thanksgiving!
BTW .... I did a fried turkey yesterday .... spectacular (as usual). One secret , bring oil to 380°, then shut off the burner and slowly lower the bird. Most folks leave the flame on during that process which is often a recipe for problems. I also keep a long handled "bailing" pan at the ready in case I need to lower the oil level.
Anyway I hope you are on the road back to feeling better.
Sorry for your digestive troubles and neutropenia ruining your plan of having drug free remission with Venetoclax. Hopefully all will get sorted out for you Jeff. After all since Acalabrutinib was kind to you and you have no side effects to continue with it like your doctor said might be the best for now.
I did have H Pilori and also stomach and duodenal ulcers long time ago and antibiotics took care of H Pilori and that was the end of my ulcers history.
Have a wonderful Thanksgiving with your family and stay safe.
Praying you keep feeling better and break 80. 😃🙏🏼💪🏼 Keep us updated for sure.
My husband has had gastritis/indigestion for years but no h pylori has been detected yet.
We came to New Orleans with family for Thanksgiving. WWII museum & then lunch today at Palace Cafe. So good!! But my husband promised to fry turkey for us at Christmas with the Cajun Injector Creole Butter 😂
Speaking as a 'lurker' who recognises and greets familiar posters names it's good to see your name pop up . Like so many others here I've been down the Helicobacter pylori trail - I think it was a triple antibiotic treatment dosage for me. Fingers crossed you get the news that really bad 'nasties ' were NOT detected.
Footnote: Big ups to Australian doctors Marshall & Warren re H pylori link to gastric nasties. 😊
Glad to hear you are doing better Jeff. It's mind boggling how many different aspects to a weekend immune system we CLL'ers have. I hope that things continue on the right track for you and for everyone here.
I'm well behind with everything at the moment and trying to catch up. I'll fail of course.
I just love the "weekend immune system". Mind over immunoglobulin (or whatever it is that makes the immune system tick - it's obviously in the grey matter.
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Blessings.
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