Coming off of Calquence.

[Grgrma]

After 2 years of treatment with infusions and Calquence (1 yr), I was taken off of Calquence because of major side effects. After being off the drug for 3 weeks, I returned for a new blood test, The oncologist said there was no more need for treatment, the blood test was perfect. My issue is that I am still totally fatigued and weak, having been off the drug now for about 4 weeks. Wondering what’s up? I felt better before undergoing treatment.

[AussieNeil Partner Administrator]

That's good news that you can now look forward to a CLL drug holiday

Give yourself a couple of months for your body to recover from treatment before looking into other causes for how you feel with your doctor. Do try to gradually increase the amount of exercise you are doing per week. I found it can help with the fatigue, provided you are up to it. Even a gentle walk can be beneficial in lifting fatigue, but it's important to pace yourself.

Neil

[Grgrma in reply to AussieNeil]

Thank you! What a breath of fresh air to see your reply. I thought maybe the drugs needed to get out of my system. I do love my Oncologist and gave him a big hug when hearing the news. I hope you are spot on!

[ClassyLady3 in reply to AussieNeil]

Have any of our members gone through a drug holiday if they have SLL ( like me)?

I am weary of the muscle spasms side effect of Calquence.

[AussieNeil Partner Administrator in reply to ClassyLady3]

There's no reason why a drug holiday following treatment of SLL with BTKi maintenance therapy shouldn't be possible. BTKi drugs are the smallest molecule drugs used to treat CLL/SLL and hence are excellent at penetrating the nodes, where they block the adhesion signalling holding the SLL cells in the nodes, the spleen (a specialised node) and the bone marrow. Adding venetoclax will certainly increase your likelihood of achieving uMRD and hence likely a long drug holiday.My CLL started out as SLL and my lymphocyte count reached its highest early during treatment with Calquence (acalabrutinib), Gazyva (obinutuzumab) and venetoclax. I achieved uMRD 3 years ago and am still in remission. Within a month or so of starting treatment, the nearly daily painful calf cramps stopped and I rarely get them now. When I do get cramps, they are very very mild compared to what they were like prior to starting treatment. Long term follow up only shows a slight advantage from adding obinutuzumab to A+V.

Neil

[Grgrma in reply to AussieNeil]

Neil,

Wow that’s very informative. Very much appreciate you sharing. This helps me understand all the swollen lymph glands that have disappeared. I too had Gazyva (8 infusions ). For the record, I was told I would need to be on two Calquence a day for the rest of my life. It was changed to one a day, but as I stated in my earlier text, I’m off the drug completely.

[RSilver in reply to AussieNeil]

Neil: Thank you for sharing such valuable information. I am intrigued by your comment "Long term follow up only shows a slight advantage from adding obinutuzumab to A+V." Did you mean that specific to your case or in general?

Richard

[AussieNeil Partner Administrator in reply to RSilver]

Progression free survival statistics for AVO in clinical trial reports match very closely to that of AV, with only a slightly better result for AVO appearing after a couple of years.

[country76 in reply to AussieNeil]

I have taken Calquance since 2020. When adding V are you taking at the same time as the Calquance or stop the Calquance and start V.

I have a bright cd20, I understand O is a target drug for cd20. I wonder if V would work without the O?

[AussieNeil Partner Administrator in reply to country76]

Given you have bright CD20, obinutuzumab should work exceptionally well for you. Venetoclax works without the obinutuzumab, but it takes longer to get to uMRD and less patients achieve uMRD status.

With venetoclax combination therapies, it's usual to take the other drug(s) prior to the venetoclax ramp-up, because any tumour debulking from the other agent(s) reduces the need for in-hospital monitoring to protect against Tumour Lysis Syndrome. My spleen protruded several centimeters below my rib cage prior to starting therapy. The ACE-CL-311 clinical trial I was on, scheduled two cycles of 4 weeks on acalabrutinib prior to introducing venetoclax. In those in the obinutuzumab arm, like me, the obinutuzumab was commenced in the second cycle. By the time I started on the venetoclax ramp-up in the third cycle, my tumour burden was low enough for my specialist to advise that I didn't need to be admitted to hospital during ramp-up. That was very welcome news, because that's when the pandemic hit.

Neil

[Westie11- in reply to ClassyLady3]

I see you are weary of muscle spasms as side effect. I am suffering with terrible muscle spasms at top of my leg, very painful at times. I am trying to convince doctors it is from Calquence but they say it is difficult to say. Currently on 2 week break to see if it improves!!

[Grgrma in reply to Westie11-]

While on Calquence, I too suffered from painful leg spasms. Now off of Calquence, that is no longer an issue. Not sure why drs don’t confirm patients by telling us, “Yes, that’s one of the side effects.”

[Westie11- in reply to Grgrma]

Thanks for your reply. How long were you taking Calquence for before you started to get muscle spasms please? Also are you now on another drug if you have stopped the Calquence? Thanks

[ClassyLady3 in reply to Grgrma]

Especially when it is a listed side effect in the paperwork I get with every delivery of my Calquence!

[Grgrma]

Hi..

It’s hard to remember when the leg spasms began but it had to be pretty quick after starting Calquence back in September’22. I want to say they got better but because it’s been a while it’s hard to recall. I am considered uMRD as Neil puts it. I had to look that up. I am no longer on any drugs or treatment which is amazing since I was told I would have to take Calquence the rest of my life. I can tell you this, there is hope in front of you because the drug worked. I was taken off it just a few weeks back because of bad side effects and bleeding problems. That was enough for him to say let’s take a break. When I checked back for a blood test, he said the results were phenomenal. FYI …A friend of mine has a different type of cancer but the drug she’s on does the same thing and gives her painful leg spasms. It must be a common side effect.

[AussieNeil Partner Administrator in reply to Grgrma]

Grgrma, I think you meant your reply for Westie11-

ClassyLady3 , have you tried topical magnesium cream applied to the muscle when the spasms come on? I found taking magnesium tablets during watch and wait reduced cramp severity. My clinical trial nurse recommended magnesium cream when I started on my clinical trial and I found that it worked within a couple of minutes of application.

Grgrma, I also found that I was more likely to have severe calf cramps on the morning after doing more exercise than usual - something to keep in mind as you work on improving your fitness to hopefully reduce your fatigue

Neil

[ClassyLady3 in reply to AussieNeil]

Yes I use the magnesium topical, but the intensity of the spasms are head to toe and break through

[TartanAlum]

This is strictly a "for what it's worth" comment. I have not gotten leg cramps while on Calquence. However, I have been on a low dose statin longer the the Calquence, and DID have bad leg cramps. A friend suggested Co-Q10. I take 300 mg per day. I have no idea if that might help those of you getting cramps on Calquence, but it certainly seems to have helped me in my situation.

[Skyshark]

The relevant trial for A mono V's A+O is Elevate TN. 5 year PFS for A+O is 84%, A mono 72% (16.6% difference)

themedicalxchange.com/en/20...

Initially up to 24 months there wasn't a statistical difference but a difference has become apparent and is increasing with time. At 4 years PFS was 87% A+O and 78% A (11.5% difference).

nature.com/articles/s41375-...

Elevate TN is continuous therapy. You are doing well on a short duration treatment.

ELEVATE TN overall PFS at 5 years

[susq9948]

I don’t an answer to your question but I do have a question. I am considering going off CalQuence since I’ve been on it for 2 years and my numbers look great.. They put me on it due to hemolytic anemia. My question is has anyone come off of it with success if the issue was anemia?