After uMRD

[ChrisLovesLife]

Hi Everyone, I've finally been labeled uMRD after 3 straight years of treatment, my first was a drug trial that was a little brutal. I learned over MyChart about it and my exit appt was cancelled due to Covid so although anti-climactic, we are astounded and grateful. I finally got up the courage to tell my physician/nurse over messaging that I feel like I've been left naked in a snowstorm with so many questions. I've had a few rapid resting heart rate issues since off Venetoclax due to low potassium and was told that my primary should handle it now (have excellent insurance) he doesn't quite agree and feels there is a crossover period. Wondering, any of you that have achieved uMRD, did you have issues or withdrawals of any kind afterward? Fatigue or minor lymph pain or burning sensation? Slow recovery after exercise? Thank you, your input would be most helpful mentally and wishing you all good health, progress and life!

[SofiaDeo]

Well, it's been a while since I had a decent remission, but I personally continued to have some intermittent B-symptoms like night sweat, or burning head sensation, that would panic me into thinking the disease was active again. So it's possible you might continue to have some "B-symptoms" like me.

I would imagine that after being on a drug a while, your body may have some symptoms going off of it as it adjusts to "life without drug". I think your primary is being more cautious in wanting at least a little bit of followup by your hem-onc. IDK if your hem-onc is swamped, my original one asked me not to see him again after I reached uMRD unless/until I had labwork indicating CLL symptoms again, as we were in a health care provider shortage area & he didn't want to see patients that didn't absolutely need him. I agreed with him, it often was a 4-6 week wait for an appointment. But even if the low potassium/tachycardia is due to sudden withdrawal of Venclexta, that's not usually something your hem-onc would treat, they would refer it. Having your primary send reports to your hem-onc (instead of the other way around) would keep oncology in the loop without actual appointments. I get it that your primary, who isn't a specialist with patients going on & off this drug, would want some input. See if they are OK with reports being sent to hem-onc until you stabilize. And if you still have a lot of questions due to not having that exit interview appointment, push for at least a tele-visit or phone call appointment to get those answers, if hem-onc is unwilling to see you in person.

[ChrisLovesLife in reply to SofiaDeo]

Thank you, excellent reply. I'm working through the issues now with a cardiologist, we are hoping that it's temporary. Apparently going off immunotherapy can cause temporary water retention and the kidneys need to catch up. It's possibly that the high diastolic pressure might self resolve in a month or so but they are giving me a light diuretic and some more tests to make sure there is no long-term arterial damage. All the best to you in the future!

[Big_Dee]

Hello ChrisLovesLife

I am in deep remission but did not have BMB to determine my MRD status. I still see my H/O every three months and my CLL Specialist every 3 months. Primarily because my CLL was so aggressive.

[ChrisLovesLife in reply to Big_Dee]

Congratulations on your deep remission, I hope things go very smoothly for you!

[IRN83]

I achieved uMRD a year ago after being treated with Venetoclax and Gazyva but did not have any issues afterwards. I did have the issues you mentioned (plus pneumonia and sepsis and others) during treatment. My doctor continues to meet with me, typically via electronic video means. I don’t think my doctor would ever send me off to another doctor. Interesting. I also use MyChart. Is this a common tool used by many hospitals or do we go to the same hospital? I go to UCSD in San Diego.

[SofiaDeo in reply to IRN83]

Health Care systems that use the Epic brand of software for their Electronic Medical Records can offer MyChart to their patients. There are other brands and other patient user systems, my #1 CLL specialist uses MyCarePlus, which I think is a McKesson product, and my local hem-onc is part of a large research university system that has their own proprietary Graphic User Interface designed by Epic, I believe.

[ChrisLovesLife in reply to IRN83]

I go to OHSU in Oregon, MyChart has combined via Epic in the Portland area with several hospital systems so all care providers can see your history and treat you in an informed manner. My original clinical trial oncologist that moved to City of Hope caught wind of the situation and is doing my exit interview himself via video, thank goodness. He will offer plenty of information!

[SofiaDeo in reply to ChrisLovesLife]

Wow, that's awesome, I hope other health care systems do stuff like that eventually!

[ChrisLovesLife in reply to IRN83]

Also, big congratulations on MRD!

[Canuck901]

Wow excellent news ! What was the treatment you believe game you the UMRD?

[ChrisLovesLife in reply to Canuck901]

Yes, definitely. I'm Trisomy 12, they all concur that the Gazyva, Venetoclax and Rituximab were instrumental. It's all about the right cocktail!

[Canuck901 in reply to ChrisLovesLife]

Yeah so where you v + O? When did you have the rituximab?

[ChrisLovesLife in reply to Canuck901]

Ublituximab + Gazyva in first drug trial, 6 wk break then started Rituxan right away, 6 doses then V for 24 months.

[ChrisLovesLife]

Thank you, I was in a drug trial with Ublituximab and Gazyva infusions 3 years ago, relapsed and had 2 Rituximab infusions and 2 Rituxan Hycela shots with Venetoclax immediately after the relapse. My Oncologist thought the Gazyva had long "shelf life" in me and thought the trifecta would do it. I stayed on treatment 24 months for a deeper remission due to my previous relapse, apparently is worked but I'm not sure if I have permanent tachycardia from it or not, working that out now. The doctor thinks the heart/fluid retention issues from quitting the treatment may resolve on their own soon. We will see!