Completed 2 yr treatment on Rituximab and Venetoclax approximately 4 weeks ago. Consultant says I'm in remission and not to worry there are other treatments I can have. That kind of took any euphoria out of my sails!Still suffering from GI problems constant visits to the loo. Colonoscopy shows some wear and tear from diverticulitis disease but no sign of anything else. They took random biopsy, just because they could. It was a fantastic service and so supportive of my anxiety. I'm keeping my fingers crossed that stomach issues will resolve and have seen on this site it can take 12 weeks. There have been some changes in presentation good and bad days. Whereas they were all bad before.
Best wishes to you all, keep battling on .
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Fastbike14
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Congratulations on your remission, someone once said (on here) when your treatment finishes, the battle is over, but the war continues - I thought it was very fitting. I was on Obinutuzumab and Venetoclax and my GI issues continued for good 4-5 months after I took my last V pill. They were less painful and less frequent as the time went on and eventually, it stopped. It is crazy to think that it can take so long for your body to get back to normal.
Somehow I'm managing to maintain body weigh which is a surprise and with not going out my bank balance is better. It's getting very depressing at times and I really hope it's not 4 or 5 months till it stops. However knowing it might take that long will stop my mind from imagining it's something worse. All the best with your war xx
Hi Skyshark, I'm not sure that I want this treatment again especially if the GI side effects were to return. I'm TP53 mutated but apparently not quite a full TP53!! but I'm expected to have the same out come treatment wise. Not sure I'm ready to consider stem cell treatment and really don't know much about it. All the best to you
I am glad to hear you are doing well, I am currently on the same regime with 2 months to go. Sometimes it is hard to envisage the end of these fun side effects.
☢︎Publisher Warning!☢︎ If you are not up for some off color humor, Do Not read on.
Remission is Good and Bad -
In my case, I have decided that remission is good in that the cancer is at bay.
However In my case it is also bad, because I am living long enough to get old.
And in doing so, I am getting to experience all of the aging wonders that the Golden Years Group engages in including making a payment every other week for a physician's boat somewhere in a warm climate.
I told my oncologist that I am going to draw the line when he tells me that I will live to see my skin fall off.
you know it's weird. At the time I only had CLL(end of 2023). Was given 4 infusions of rituximab 1 a week in December 2023. Never heard from doctor (saw him once while he was seeing 2 other patients at same time) had the infusions and never heard from him again. Not a call. Not a note. Not even from PA! Point being, in January 2024 I had a BMB because I was having issues which suddenly showed CLL and three highly aggressive acute leukemias, two of which are rare. Went to Sloan where they gave me Flag Ida treatment that almost killed me. I've often wondered, and questioned, whether the prior Rituximab infusions had anything to do with it...like "bringing them out" so to speak. However if they had been sleeping , I guess it was better to wake them up...I don't know. I've found most things you never get an answer to. Deep sigh
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