Allopurinol with V &O treatment for CLL

[Gradyboy]

Has ànyone taken Allopurinol to prevent tumor lysis with Gazyva and Venclexta treatment? How long did you take it and has anyone had an allergic reaction to it?

[AussieNeil Partner Administrator]

Allopurinol is commonly used to reduce the risk of TLS. It is taken until the risk of TLS has passed. I was prescribed it during my treatment with acalabrutinib, venetoclax and obinutuzumab as I had an enlarged spleen, protruding a few centimeters below my rib cage.

It's not uncommon to develop an allergic rash from allopurinol and we do have members who have experienced this, though I couldn't find one in a community search. Rash turns up high on the drugs.com list of side effects for allopurinol:

Stop using allopurinol and call your doctor at once if you have:

- any skin rash, no matter how mild;

drugs.com/allopurinol.html

Neil

[bayside64 in reply to AussieNeil]

I developed a body rash. I was in the hospital awaiting my first dose of Venetoclax. The hospital did not have the alternate drug , Februxostat. The following day I took Februxostat and first dose of Ven. Next day another dose of Ven. That day I developed full case of TLS. Awful!

[AussieNeil Partner Administrator in reply to bayside64]

Glad you are still here. I wonder how many hospitals don't carry februxostat?

[steve_canada in reply to AussieNeil]

Hi Neil, my doctor wants to put me on V+R next week as I have relapsed on Acalabrutinib. Did your doctor favour V+O vs V+R ? Are there studies that suggest V+O is a better combo?

[AussieNeil Partner Administrator in reply to steve_canada]

Hi Steve,

Please stay on the acalabrutinib until you transition to your venetoclax based treatment to avoid the risk of tumour flare. When BTKi treatments fail due to the development of resistance, they tend to do so gradually. Given you first posted about your dilemma a month ago, it looks like your CLL specialist is aware of this.

I take it this is the trial you are hoping to be accepted into?

A Trial of Pirtobrutinib (LOXO-305) Plus Venetoclax and Rituximab (PVR) Versus Venetoclax and Rituximab (VR) in Previously Treated Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL/SLL) (BRUIN CLL-322)

clinicaltrials.gov/ct2/show...

Obinutuzumab is a second generation anti-CD20 monoclonal antibody, developed in the early 2000s, a decade after the development of rituximab. While it's considered more effective than rituximab, rituximab still works very well and the trial gives you access to a limited term treatment with venetoclax. Otherwise, I presume you should be able to access venetoclax monotherapy per newswire.ca/news-releases/a...

I would consider that a considerable benefit of joining the clinical trial, is that you should be able to repeat V+R later if needed, plus it buys you time for the approval of new treatments.

I don't know of any head to head CLL clinical trials of obinutuzumab and rituximab and I doubt there will be, given rituximab is out of patent and the company has decided to defend its market share by producing a subcutaneous delivery version.

I didn't have any monoclonal antibody choice either; I just happened to land in my trial arm where it was added to acalabrutinib and venetoclax, a triplet therapy that probably won't ever see use outside of a clinical trial.

Neil

[steve_canada in reply to AussieNeil]

Hi Neil, unfortunately after having a bone marrow review my CLL has morphed into CLL/PLL and this has made me ineligible for the LOXO 305 trial at Princess Margaret.

So as a result my oncologist wants me to start V + R next week.

He tried to get me into the trial on a compassionate basis but that can only occur after 5 relapses and I’ve only had one relapse on IB.

The V + R will last two years he says .

After that who knows - I’m hoping CAR-T will be close to a standard of care by then.

Cheers

Steve

[DRM18]

Hi Gradyboy,

I took it for about a month, starting 2 weeks before the first O infusion.

No reaction whatsoever here!

--Dave!

[Gradyboy in reply to DRM18]

Thanks Dave. Do you take Venclexta? Did you stop the allopurinol before staring V?

[DRM18 in reply to Gradyboy]

I believe so, yes. 2 weeks into treatment, I was out of the meds, & my doctor saw no reason to continue them (from what I can recall).

Possible I’m remembering wrong; if so, it was another month, 8 weeks total.

[Winegrape in reply to Gradyboy]

For me, I started 3 days prior to obinutuzumab and continued for 8 weeks which was with the Venetoclax. I didn't have any bad reaction to it. It did make me pee a lot which was good as it gets all of the dead cells washed out.

[Big_Dee]

Hello Gradyboy

I am currently doing V&O treatment. I am currently taking Allopurinol and have been since shortly after starting Gazyva. My H/O recently had me pause Allopurinol between weekly blood tests. My uric acid shot up out of range, so I have continued Allopurinol. I take Allopurinol to reduce possible damage to my kidneys or gout from uric acid. I could be wrong, but it is my impression that the Gazyva is to reduce the chance of tumor lysis before going on the Venclexta. The pause of Allopurinol was to see if my uric acid would go out of control. Long term use of Allopurinol can cause liver damage, therefore H/O is monitoring my uric acid and liver function as well as CBC & CMP weekly or biweekly. I hope this information helps, I am not a doctor. Blessings.

[Gradyboy in reply to Big_Dee]

I have been on it for about 5 weeks, I just started the Venclexta three days ago. But for the last week I have been itching and now have a mild rash. I read the allopurinol can do that about a month in. I know it's not the V because it started before I started taking it. I also take potassium.

[Big_Dee in reply to Gradyboy]

Hello Gradyboy

I have not had any reaction to the Allopurinol and other than one week pause, have been on it for 2 months.

[SofiaDeo in reply to Big_Dee]

The Gazyva itself is an anti CLL drug, in addition to bringing the tumor load down and minimize TLS chances. So this protocol is considered a "2 drug regimen" because there are 2 agents that actually fight the cancer. The other drugs like allopurinol, and possibly an antiviral, or antibacterial or antifungal, don't directly affect the cancer so aren't considered a part of the "anti cancer" in the regimen. They are part of the "protocol", i.e., the exact drugs and lab testing or other steps taken when treating the cancer.

So when we talk about "V&O" protocol, it's to acknowledge the anti cancer drug part, even though everyone will also be taking allopurinol too.

[Mtk1]

I have taken allopurinol for over twenty years after suffering gout, My haematologist was going to prescribe it when I started accalabrutinib but I told him I was already taking it. I have had no adverse effects from taking allopurinol that I know of.

Dave.

[Pinkdark2018]

Hello, yes I had an allergic rash to Allopurinol after 2 weeks of taking it and it was stopped. I was given an alternative until established on venetoclax.

[Gradyboy in reply to Pinkdark2018]

Whàt was your allergic reaction like?

[Pinkdark2018 in reply to Gradyboy]

I had a rash over both legs which was itchy. Looked like tiny blood blisters, from memory. Consultant looked at the rash and immediately declared it an allopurinol rash and swapped me onto Febuxostat until I no longer needed it. I had no issues with this drug at all.

[Gradyboy in reply to Pinkdark2018]

I will be calling first thing in morning. Thank you!

[Pinkdark2018 in reply to Gradyboy]

You’re welcome. Hope you get the situation sorted.

[Senecio in reply to Pinkdark2018]

Hello Pinkdark2018 - I am allergic to Allopurinol. As I am likely to be taking another treatment soon, I wondered what your alternative was, and whether you had any issues taking it.

John

[Pinkdark2018 in reply to Senecio]

Good morning. I was given Febuxostat to take and had absolutely no problems taking it at all. I have no other health conditions apart from Cll, to contraindicate it’s use.

[Senecio in reply to Pinkdark2018]

Thank you - that is very helpful.

[Gradyboy in reply to Senecio]

What kind of allergic reaction do you have to allopurinol?

[Senecio in reply to Gradyboy]

I took it for one month when having FCR. I had very high temperature and broke out in a rash (actual spots) all over my body. The nurse took one look at me and said "Thats the allopurinol". I stopped taking it and co-trimoxazole, which I was also on for side effect suppression. When I restarted the co-trimoxazole, I again experienced a high temperature, and stopped taking that too. I suppose it's just possible that I wasn't allergic to allopurinol, but only co-trimoxazole, but my record now shows 'allergic to both allopurinol and co-trimoxazole'. I had to take antihistamine pills and cover myself with emollient cream for a week or so until the spots gradually disappeared.

[Hilo13]

I am starting my third cycle of V and O in two days . I started the allpurinol before the ramp up of ventoclax. I have had no issues with the medication and so far everything is going smoothly. I also had an IV of a drug that escapes me now in my first two weeks of ramp up . This was to help reduce the risk of TLS . The consultant decided that as my blood readings were all fine I haven’t needed it since . I have two tablets left so will find out on Tuesday if I will continue to take it . Good luck I’m sure there must be alternatives if allopurinol doesn’t suit .

Chris

[NaturalWaze]

Hi, I took it during V&O. I am pretty sure it was stopped when O was done.

[Flute117]

I was on Allipurinol through my first 2 months of Obinutuzumab infusions. No side effects/reactions to Allipurinol.

[Moma64]

I was on it for a few weeks after starting Ibrutinib and developing gout. No noticeable side effects that I recall and the gout cleared up.

[Shefflass]

I took Allopurinol during the ramp up phase of V and R. I had dreadful itching/ prickling on the soles of my feet, legs etc from a few hours after taking it. It lasted about 10 hours each time. I persevered but it was really very unpleasant and I didn't get much sleep some days. However, from 15 hours after my last dose the itching disappeared and never returned. I didn't realise there was an alternative. Duh - should have asked for one 🙄!

[Gradyboy in reply to Shefflass]

Did you have any rash with the itching?

[Shefflass in reply to Gradyboy]

No I had no rash at all. Just the bad prickling and itching.

[Scentifolia]

Hello, I was given Allopurinol when I started FCR treatment. I developed an itchy rash all over my body, but especially my legs and hips, after about 10 days. The Consultant told me to stop taking it, but I wasn’t given an alternative as it was judged the worst danger from TLS was passed.

[Gradyboy in reply to Scentifolia]

How long did it take for itching to stop?

[Scentifolia in reply to Gradyboy]

Sorry, I can’t remember exactly, but I think it was probably a couple of days, same for the rash.

[Gradyboy]

Thanks