Be aware of confusing stomach symptoms – lesson learned !!!

[Hoffy]

Happy New year!

I am on the Clinical Trial of V plus I for the last year. So far I am MRD negative in the Blood and CR on the MRI. I am Unmutated and 17P Deleted so also very concerned.

I had an MRI at the end of the year since I was getting bloated and had more urgency urinating.

I was very afraid it might be my stomach nodes growing again. Fortunately the MRI show my nodes were not growing!!

I started taking the Venetoclax after dinner about 2 months ago and I think that caused this. ( I found out I was supposed to take it with food) Before that I was taking the Venetoclax with Imbruvica before bed. I am going to trying taking the I plus V before bed a few weeks and see if that helps my Stomach. I take it with a natural prostate pill, B-12 and Biotin as well. So maybe that is kind of like taking it with food. I added Biotin about 6 months ago. That might cause stomach issues too. I am not sure.

Bottom line is stomach bloating can cause dull stomach pains , fullness and bladder urgency . These are the same symptoms as nodes growing in ones stomach!!

I do not have nodes growing in other areas so that was good as well.

I just wanted to share what I found. I used up my max out of pocket on my insurance so I wanted to do it before the end of the year!

Be well,

Hoffy

[MelioraDay]

Just an FYI: Venetoclax absorbs best with a meal that contains fat.

[Hoffy in reply to MelioraDay]

Do you take in before , during or after you eat?

[MelioraDay in reply to Hoffy]

I take my Venetoclax immediately after eating my breakfast

[Hoffy in reply to MelioraDay]

Thanks!

[BCTexas]

Good to hear from you Hoffy.. I was wondering how you were doing. I start V next week. I'm hoping to get the same results as you. I have done well on IB with a few common side effects and I'm looking forward to becoming MRD negative. Did your doctor say how long you will be on IB-V? I believe I was told the trial is 2yrs.

Happy New Year!

BC

[Hoffy]

After 16 months I get randomized depending if I am MRD a negative in the bone marrow or not. If I am MRD negative I stay on IB or a placebo. If i am not I stay on IB or IB plus V. Both randomly picked.

I think the trial goes on indefinitely as long as it keeps working and I stay on the protocol. The drug company wants to show how long the drug works. The longer the better .

[cartwheels]

I share your concerns I to are 17p and on inbrutnib 7 months now and nodes blood's all good. But I also notice that occasionally I have days where I need to pee more and although all my visable nodes are gone my stomach still seems swollen better then before treatment where my belly button stick out but not in as before cll it might be and probably I'd nothing but it does make you worry all the best happy new year to you