Venetoclax and Allopurinol

[profrich]

I am wondering how long you were kept on allopurinol after you started venetoclax.

[johnl]

I was on for 3 mos

john

[profrich in reply to johnl]

My ALC is 9000 after two weeks. I was hoping to get off soon. Did you take it after your ALC was already low?

[johnl in reply to profrich]

I actually took it till my prescription ran out. It's possible I could have stopped earlier.

john

[thb4747]

I went on to the full 400mg dose of Venetoclax in May and stopped taking Allopurinol in November. I’d been taking it for a number of years.

[MelioraDay]

I was on Allopurinol for 6 weeks after initiating treatment with Venetoclax. My CBC was normal at that time.

[Psalm22-3]

Today's my first day at 400mg Vx, and have been advised to discontinue allopurinol in a week (having been on it for ~4 months, when I started on imbrutinib, and having maintained low uric acid throughout those 4 months).

[Mick5329]

I’ve been on it since I started Venetoclax and ibrutinib 26 month ago.

[Ellieoak]

Profitch, I took it for 8 weeks by then it showed up normal for the last 2weeks. Anna

[E-Lynn]

My memory is I took it for a month or less .. never had to refill the prescription. My ALC was about 100k when I started Venclexta and went down dramatically almost immediately. This was in 2017.

[Patc890USA]

I took it the first two weeks of the Venetoclax ramp up. Then when I went to 400mg and my uric acid number was going up they put me on it for two more weeks. Just finishing up on it in a few days.

[Lily_Pad_Master]

Hi. I would think that’s a function of your disease burden and the efficacy of Venetoclax for you. Allopurinol started at the start of my trial, the Acalabrutinib. It continued through the addition of Obinutuzumab and through Venetoclax titration up to 400 mg. Seems like about four months.

[newyork8]

Well test your uric acid once you stop. If high keep taking it again. Very simple.

[Momlyn]

Similar to circlesaba, started before acalabrutinib, then after started obinutuzumab, then Venetoclax ... about five months.

[Smakwater]

During venetoclax my Oncologist would have stopped the allopurinol at the time my WBC/Lymphocyte numbers were within acceptable range, however, I have a uric acid condition that predisposes me to gout. I had been taking allopurinol for eight years prior to CLL, so the Onc decided to have me stay on allopurinol indefinitely.

The time on venetoclax when the oncologist commented about stopping the allopurinol was at about 5 weeks which included the 4 week ramp up to 400mg. So, only one week at full dose.

Should also note that I am being treated in a trial whereas obinutuzumab was used for ten weeks prior to venetoclax, and during that time my peripheral blood counts returned to acceptable ranges.

Two obinutuzumab infusions left, one next week and the last one mid April. Should have a BMB within the next 4 months, and approximately 10 more months of venetoclax.

So far nothing adverse, only improvements

Please bare in mind that we may respond differently.

Hope this info is useful,

JM

[profrich in reply to Smakwater]

So, your plan is to not take venetoclax or anything else in 10 months?

[Smakwater in reply to profrich]

That is the intent. However this is CLL, and I will continue to study the ever changing medical landscape.

Mostly doing today as best it can be though.

What about yourself?

[profrich in reply to Smakwater]

After two weeks on venetoclax, I seem to be doing well (ALC about 9000). My doctor wants me to start rituximab (like obinutuzumab) so I can eventually quit venetoclax. However, I told him I won't take anything I don't have to take right now (for fear of side effects). I might add it down the road.

[ChrisLovesLife]

2 weeks after starting Venetoclax mine had me stop due to excellent uric acid numbers.

[profrich in reply to ChrisLovesLife]

Mine are 3.2, but they go back up to close to 5 or is if I do not take allopurinol. Didn't yours go up?

[ChrisLovesLife]

Mind hold around 2.5 to 3, he usually takes me off of it pretty quickly after starting treatment. It goes up to 4-5.2 at the onset then levels back off under 3 pretty quickly.

[profrich in reply to ChrisLovesLife]

I have been on venetoclax 2 /12 weeks. My ALC is 5.67 and my uric acid is 3.2. I wonder if it makes sense to stay on allopurinol. The problem is that my spleen is a little enlarged, I guess harboring lymphocytes.

You quit allopurinol after 2 weeks. Did you ever go back?

[ChrisLovesLife]

No, my doctor was fairly dismissive about it after it dropped, he said that challenge was over for me for now. I just attended the CLL Society post ASH conference in Portland yesterday and they were singing the praises of Venetoclax, he said his goal is to not see me very much over the next few years I wish you all the best!

[profrich in reply to ChrisLovesLife]

Thanks. Are you doing rituximab? Another member said they will probably to clinical trials with cirmtuzumab, which seems safer. It might be available to us in a year or two.

[profrich in reply to ChrisLovesLife]

How often did you have blood tests? I think my doc is doing them too frequently, draining my energy.

[ChrisLovesLife]

Yes I'm on Rituximab, I'm highly active so the Doc didn't want Ibrutinib due to A-fib. The last month and a half saw many blood tests but only during Venclexta start up, then due to 2 illnesses but now only prior to Rituxan infusions, once monthly from here on out, once the infusions stop he thinks every 6 months!

[profrich]

So, as far as venclexta is concerned you only had blood tests for the first two weeks?