Intro

[Virgo10]

Hello everyone!

I have been reading your posts and have so much appreciation for what I have learned. I was diagnosed with atypical cll in 2007 and started treatment about 4 years ago. I had a terrible reaction to Ibrutinib. It severely aggravated my osteoarthritis. I was switched to its cousin acalabrutinib and I have done vey well so far.

I live in Tampa, Florida and I am looking for a CLL support group. Any suggestions?

Thanks so much!

[EugeneL2]

Huge welcome!

Here is the link to the Tampa CLL support group.

cllsociety.org/venue/moffit...

[ygtgo]

Hi virgo10

Welcome to our support group.

I'm sure that you will find kindred souls on here who will be familiar with your treatments and location.

ygtgo

[GMa27]

They have a support group at Moffitt Cancer Center in Tampa!

I live 4 hours from there, so I only went to Moffitt for second opinion. Is your doctor at Moffitt?

[Virgo10 in reply to GMa27]

Yes, I go to Dr. Penilla. I feel that my health issues are getting more complex and I am going to see other cll physicians and get other opinions. Where do you live?

[GMa27]

I saw Dr. Pinilla! I am in Palm Beach County. I have a wonderful local oncologist. Also got another opinion in Ohio. Heard MD Anderson in Houston is good too. Are you going out of state for another opinion?

[Virgo10 in reply to GMa27]

I am going to Mayo in Jacksonville and Shands at university of Florida in Gainesville. Likely will also look at Cleveland Clinic in South Florida. Glad that you have high confidence in your doctor.

[GMa27 in reply to Virgo10]

Only CLL experts listed in FL are at Moffitt and JAX Mayo.

[Virgo10]

Nam Dang, M.D., PhD, Specializes in CLL

Gainesville

Excellent credentials and mostly great reviews.

[Kokobean]

Welcome to the group! I was interested in reading your reaction to ibrutinib. My husband will be starting ibrutinib soon, but has RA. I am concerned about the joint pain associated with this medication. It’s good to hear that Acalabrutinib worked for you.

[Virgo10 in reply to Kokobean]

I was on Ibrutinib for 6 months but could not tolerate its affect on my joints. I haven’t had any joint problems with acalabrutinib. Hope your husband does well!

[PaulaS Volunteer]

Hi Virgo,

Welcome to the forum. I’m glad to hear you’re doing well on Acalabrutinib – long may that continue.

I was interested to hear that you switched to Acalabrutinib because Ibrutinib had been aggravating your osteoarthritis.

I’ve now been on ibrutinib for 18 months, but after about a year I became aware of osteoarthritis in my hands. It’s gradually been getting worse since then, though I’ve been to a physio and been given special exercises.

I’ve never had osteoarthritis before, nor has anyone in my family. Until I read your post, I assumed it was just an aging thing with me, but now I’m wondering if it is a side effect of ibrutinib.

Best wishes,

Paula

P.S. I had a lot of painful, swollen joints soon after starting Ibrutinib, but that got better after a few months.

[Virgo10 in reply to PaulaS]

Hi Paula,

I was told by my cll specialist that Ibrutinib can cause joint pain. Have you asked your physician?

[PaulaS Volunteer in reply to Virgo10]

Hi Virgo,

Yes I told my doctor about the painful swollen joints in those early months and he agreed it was due to ibrutinib. After about 6 weeks those joints went back to normal, all rather suddenly.

It was about a year later that I started getting very different joint pains. (Sorry i didn't make myself very clear when i wrote before). These pains are just in my hands and with no swelling or redness - just distortion and lack of mobility. X rays showed osteo-arthritis.

It feels very different to the earlier joint pains, and I didn't connect it with ibrutinib till I read your post. I didn't think to tell my haematologist as I assumed it was just an aging thing. But now I will tell him - it will be interesting to see if he's had other patients with the same thing.

Acalabrutinib does seem to have less side effects than ibrutinib, so I hope it will be more widely available in future.

Best wishes,

Paula

[Virgo10 in reply to PaulaS]

Paula, thanks for clarification. I hope your joints feel better soon. Please let us know what your physician says.

[Smakwater]

Virgo10,

Good for You and Acalabrutinib too!

JM

[Virgo10]

Thank you everyone for your warm welcome.