Does every treatment have a price?

[Mumu1]

About 6 months ago, I had to switch from Ibrutinib to Alcalabrutinib (Calquence) due to severe side effects (mainly loss of hearing, vision problems, some digestive issues) which fortunately subsided right after I discontinued Ibrutinib. But now, my digestive system is completely upside down and I can hardly even leave the house anymore after a meal. Various tests left Calquence as the only possible “culprit”. Did anyone of you on Calquence experience similar issues?

[cajunjeff]

Hello Mumu, I am sorry you are having the side effects you report. I switched from ibrutinib to acalabrutinib, and acalabrutinib has been an easier drug for me. Acalabrutinib does come with a list of side effects which some of us will get and others not.

I do think in answer to you title question that every Cll treatment does come with a price, whether it be chemo or one of the novel drugs. All drugs have potential side effects. Cancer drugs typically carry a higher toxicity risk we are willing to take because untreated cancer usually doesn’t end well. While I am tolerating acalabrutinib well, I assume long term use may cause problems, that’s why I am adding venetoclax to see if I can get off all drugs. Venetoclax has its own set of side effects, so no free ride there either.

Since it doesn’t sound like you are resistant to btk drugs, another btk drug like ibrutinib or acalabrutinib might work for you with less side effects. Zanubrutinib comes to mind. You might ask your Dr if that’s an option. Other options you might discuss with your Dr include reducing your dose of acalabrutinib, pausing it for a while or switching to venetoclax.

My understanding is that most btk side effects improve over time. I hope yours do. If your quality of life is poor, it can’t hurt to ask your Dr what your options are.

[Mumu1 in reply to cajunjeff]

Thank you very much, Jeff. I really appreciate your suggestions and you sharing the alternative path you chose. That is very helpful. You thereby answered what was more of a rhetorical question Thank you and I will discuss those options with at my next appointment after doing my “homework” on the alternatives you described. It just so ich more meaningful if it comes from someone who is affected with “hands-on experience” than just reading it in a paper. So, thank you for your time and insight!

[AussieNeil Partner Administrator]

Further to cajunjeff 's reply, if this distressing side effect doesn't improve with time (it does for most on Calquence), then do ask your doctor if you can reduce your dose to one capsule a day and experiment whether taking it in the morning or evening works best. You'll need to shift the time you take your dose gradually, by no more than 3 hours each shift: cllsupport.calquence.com/hc...

Interestingly, now that second generation BTKi drugs which are proving equally effective, but with a lower side effect profile are becoming available, the Imbruvica website is pushing the requirement to take the capsule(s) once a day as a competitive advantage. The later generation drugs have a shorter half life, which is why they need to be taken twice a day.

Neil

[Mumu1 in reply to AussieNeil]

Thank you, Neil, for elaborating on Cajunjeff’s suggestions. This is very helpful and will be I Porta to in my conversation with my oncologist who is not a CLL specialist but open to listen when presented with “evidence” so to speak. - When on Ibrutinib I could convince him to reduce the dose. I will present him your suggestion to reduce the dose and possibly switch if that does not resolve the issue. Overall, we are very lucky that so much is moving in the CLL world. Besides the third generation now out, there’s now even an improved Calquence out there which allows the use of antacids for those experiencing acid reflux issues with the “old calquence”.

Thank you very much for chiming in, leading to another alternative to taking another medication to counteract side effects. Thank you!

[AussieNeil Partner Administrator in reply to Mumu1]

Your oncologist needs to be satisfied that your CLL tumour burden is at a manageable level, but given you've already been on ibrutinib beforehand, that should help. Also, given you are in the USA, your oncologist can prescribe Zanubrutinib off label if he would prefer you to have greater 24 hour coverage. It's approved for MCL and approval for CLL is imminently anticipated. The NCCN CLL Guidelines incorporated it as one of the recommended treatments last year.

Neil

[Sushibruno]

This is where my anxiety mostly comes from "The price of treatments".

[Mumu1 in reply to Sushibruno]

Hello, if you mean by “price” the $$ amount, let me know. I’m certainly with you on that one and had quite a few sleepless nights. I’m currently still/again on an insurance that covers 100% of the drug cost but that will end in the foreseeable future and I am in the process of figuring out alternatives that won’t eat up all of my social security check. I’d be more than happy to share what I can find out. Best wishes!

[Sushibruno in reply to Mumu1]

I'm referring to potential side effects. That's the price im talking about. But we all know all medications comes with that.

[onu1tadi2]

I got rid of most side effects of calquence by simply taking half dose. Been on half dose for 2 years now. My blood tests are normal.

[Mumu1 in reply to onu1tadi2]

That is great news - thanks for sharing! That falls right into place with suggested alternatives, and I will certainly try that. Hope the good results will last for you!

[onu1tadi2 in reply to Mumu1]

Thank you. I am sure you will feel better

[JLJC in reply to onu1tadi2]

Did your Dr have any issues with reducing your dose to 1x a day? I am glad to hear you have been doing it for two years. I am starting once a day to see if it alleviates rash and itch side effects. I wasn’t sure If dose reduction would affect my CLL getting better.

[onu1tadi2 in reply to JLJC]

Hi JLJC, I had been taking Ibrutinib before, only two out of the three pills in prescsribed dose. I actually went off for 6 months and my blood counts stayed normal, after which I switched to acalabrutinib (about 10 months ago). But keep in mind that there are great variations between individual patients. My doctor(s) who was just replacing one of them who was away said lots of his patients were on a reduced dose.

[JLJC in reply to onu1tadi2]

Thanks for your reply. It is all part of the CLL journey 💪🏼💪🏼

[Pageboy]

I had a few months of stomach issues when I started Acalabrutinib just over a year ago. Constipation with stomach pain, weight loss. Normally it has the opposite affect. Don’t know what your particular issue is, but my consultant took me off for a few days and then lowered the dose for a few more days and that did the trick. Plus sachets to get things moving. Did the trick and the pain went away. Sometimes it flairs up again and I either miss a few doses (with his permission) or take a sachet which - so far - fixes it.

[Mumu1 in reply to Pageboy]

Thank you! It’s amazing how many different ways there are after all to counteract side effects. It’s different for everyone so it’s very helpful to get varying input to try. Probiotics didn’t help so far, tried that, too. But going off and then lowering the dose - for a while or for good - is worth a try. I appreciate your reply. Thank you and hope your solution will keep working for you!

[Sheng in reply to Pageboy]

Hi, Pageboy, I am take Calquence for 7 months, begin of that was amazing , no side effect at all, and nods shrank, but start almost two month ago, start feel tired, then muscle pain, then stomach pain, then constipation, i think i have similar side effect with you, except i have every bad tiredness which you did not mention, really wonder how to do managed to get thru all those.did the "reduce the dose " cause any nods grow back or those node come out?

[Pageboy in reply to Sheng]

Hi Sheng, my consultant suggested I come off for a few days so you might want to ask your doctor. It was for a short time. 3 days no dose at all and 3 days on half dose. There was nothing very scientific about it , I don’t think, more let’s give that a go. It had no noticeable affect on my nodes or blood count though I realise that can be a worry. Ask your doctor. I don’t think it can hurt and will hopefully make you feel better. You may need more investigation however in case it is not the Acalabrutinib giving you discomfort.

[Sheng in reply to Pageboy]

Thanks very much, will ask Dr, do you never experience tiredness after treatment?

[Pageboy in reply to Sheng]

Luckily, no more than usual! Though some people do seem to feel more tired.

[Sheng in reply to Pageboy]

Wish you all best, very appropriate all your information

[StayingUpbeat in reply to Pageboy]

Same with me! I had been on Calquence for a few months...then excruciating stomach pain...CT scans...only to tell me it's constipation. And when speaking to the pharmacy nurse..."oh, yeah...constipation can be a side effect, too". Wish they said something about that on the Calquence website--it would have saved $$ on tests. It seems to me that constipation and diarrhea are on opposite ends of the spectrum. I take stool softener & senna daily now... no more problems.

[MN1999]

So sorry to hear you are having side effects. Ibrutinib walloped me the first few months I took it, but I was able to figure out that I needed to take it early in the morning with a large glass of warm water and not eat anything for at least four hours. The other issues have resolved over time PTL! I hope your problems with Acalabrutinib resolve soon. Have you tried babying your digestive system with yogurt, kefir, decreased processed food ... etc.?

[Mumu1 in reply to MN1999]

Thank you for your suggestion. It had never occurred to me that there is a medication that’s better taken on an empty stomach. Typically it’s the opposite. So, I will certainly try that as well along with other tips to “conquer” the side effects. I tried the “babying approach”, changing diet several times with and without a nutritionist’s help - all to no avail. That’s what brought me here. Whatever I learned here seems to make the most sense. To I’m very grateful for all the advice! And I’m very happy to hear that you found a way that works for you and hopefully will keep working! Best wishes & a big thank you!

[onu1tadi2]

I take acalabrutinib before going to bed.

[Indolent]

Before I began treatment, I always viewed side effects as an abstract concept that only happened to the "other guy". However when I began treatment, I became the "other guy". And the initial months presented a myriad of rashes, headaches, body aches, dizziness, neutropenia, thrombocytopenia, etc.... Over time and with some tweaking of my medications, most of the side effects have greatly lessened. At this point, I don't complain because I can see my CLL is being subdued.

My hope is that you can weather this storm and make the adjustments to bring you success as well.

[Mumu1]

Thank you for your kind words of encouragement. I’ll take your words to heart and will keep “tweaking”, using all the valuable input received for which I am very grateful. Every comment is helpful. And yes, it is important not to loose sight of the fact that these meds do a great job. Hope they keep working for you as well!

[LuzyCLL]

I do believe every treatment has a price, a cost to your health