Imbruvica Alternatives ?

[Pirate64]

I have had NHL ( indolent) since 1991 and have been on Imbruvica for 18 months. Lots of treatments in between.

The numbers are great but I have weakness in my thighs, pain in my shoulders. and my gait is off sometimes. I have also lost gripping power in my hands.

None of this is debilitating. I walk 30 minutes a day but I have trouble getting up from a chair without pushing down and can’t open a jar.

Any better alternatives out there? Or at 75 should I just live with it and hope things don’t get worse.

Tx

[Cllcanada Top Poster CURE Hero]

Which NHL do you have? There are many subtypes, like CLL which is a NHL.

Recently in the U.S. a drug somewhat like Imbruvica (ibrutinib) called acalabrutinib was approved for MCL, and it shows less side effects in clinical trials.

Worth talking to your hemaetologist about...

~chris

[Hidden]

You were Dx 4 years before I got married.....I dunno....things have been going pretty OK for you compared to some. I was Dx 17 months ago at 50 and man, the fatigue is killing me faster than the Leukemia.

I would definitely talk to your Hematologist about the issues...and for sure if anything gets worse. I have not taken IB yet but my understanding is side effects will generally decrease over time....that may or may not be accurate though.

Scott

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You should lock your post...that makes it so it does't show up on Google. Lots more people will answer a locked post. Go right under your post, click the MORE button, then choose EDIT....at the bottom swap the little radio button over from EvERYONE to ummm, I think it says "ONLY MEMBERS OF THE COMMUNITY" which means people who are on this forum.

[WMwife in reply to Hidden]

Scottxxoo, hang tough! My husband was dx’ed in his mid 40s. Just turned 60. He has seen both daughters get married and we have a grandson now. Imbruvica isn’t fun, but a lot better than all the other aggressive chemo he had to take, which left him looking like a little old bald man who btw, couldn’t even get off the couch at times.

He hates Imbruvica too and it’s hard seeing the side effects he has to put up with. We know though, that it’s a game of hanging on and “waiting for the research to catch up” to him, as it has been all along.

I wish you strength and happiness.

[Hidden in reply to WMwife]

Thank you. Except for fatigue I am doing pretty Okie Dokie. I would take Ibrutinib in a heartbeat if 1. they would give it to me and 2. (see #1)

The fatigue for me has been the real issue the last 15 months +/-

[mgh348 in reply to Hidden]

I hope your CLL girlfriend (Dr. Lamanna) will help.

[Hidden in reply to mgh348]

Thank you. I too am hopeful Dr. Lamanna will have a few tricks up her sleeve to help me out

[Fant1924 in reply to Hidden]

Seems to me that excessive fatigue IS a reason to initiate treatment with one of the so called novel therapies.

Dennis, 71, Ibrutinib

[richutchens]

I’m in the same situation. Been on ibrutinib for 24 months

[larrymarion]

Hello. I've been taking Imbruvica for 4.5 years and have endured a host of side effects. Indeed most CLL patient using imbruvica experience many side effects. Welcome to the club.

Specifically, many patientsreport joint and muscle pain, fragile fingernails, inability to tightly grip objects, etc. Definitely discuss these issues with your hemoc. Ask him about the over the counter meds recommended to deal with these issues.

For example, magnesium capsules provide relief for muscle pain. Also make sure you drink a lot of liquids/water.

And, as CLL canada noted above, a new version of imbruvica called Calquence (trade name for acalabrutinib) has been shown to trigger far fewer side effects. It was developed to avoid the afib issue associated with imbruvica but also offers relief from other imbruvica side effects.

Definitely need to ask your hemoc about these and other alternatives. And if your hemoc agrees that maybe it's time to try another drug, ask him to first ask your insurance company if they'll cover the alternative.

[bhayes84 in reply to larrymarion]

Acalabrutinib (Calquence) is FDA approved for MCL (mantle cell leukemia) but many doctors, including mine, will prescribe it 'off label' for CLL.

It's now covered under Medicare part D which means there is a copay (very large I think) but there are ways to get that covered. AstraZenica (the maker of Calquence) has a page on their site offering assistance saying most patients can get it for no charge or small charge. There are also foundations which will assist. I'm currently waiting to hear about this.

My suggestion is to be your own advocate and push your doctor on this if necessary.

[tryandtry]

In furtherance to Chris (CLLCanada) and Bill's (bhayes84) comments, I have been on Calquence for 4 months, after some serious side-effects from Imbruvica. It's still "off-label" for us CLLers, but likely will get FDA approval for CLL w/in a year, or so.

To me, it has proven to be much milder than Imbruvica, but so far is still effective. When I started Calquence this April, my WBC was 249,000. Now, a little less than 4 months later, with nothing but the normal dose of Calquence (two, 100MG capsules per day) it's down to 81,000. That's not earthshaking, but the decline is more than 67%, it has been steady every month, my lymph nodes have disappeared, and my spleen has returned from "pretty swollen" to "almost normal". Best of all, I feel very good!

So, if you're having problems with Imbruvica's many side-effects, I'm only a sample-size of one, but I'd definitely suggest that you talk to your ONC about switching to Acalabrutinib. [But, as bhayes84 says or infers, get your financing in line, if that's a concern. The drug's inclusion on Medicare Part D formularies is quite new, and it may not yet be universally accepted by all insurers].

Gary