Ibrutinib Update

[retired46]

Hi everyone.

I thought I would post my update of my experience so far of Ibrutinib.

I have now been on Ibrutinib for 8 months following a diagnosis 2 years ago and a course of Obinituzimab which failed 12 months ago.

On starting the treatment I had substantial large nodes everywhere which after 5 days on Ibrutinib started to shrink. Regular blood checks showed the CLL reacting well to Ibrutinib, and after 4 months all was going well and I was not required to have regular checks and was given an appointment four months time which was today.

My consultant reviewed my bloods today and said they were all very normal and he was happy the Ibrutinib is working as it should be and I did not need to return for another 4 months.

If Ibrutinib should stop working at any time there is now an alternative I can be offered.

I have had a few very minor side effects, couple of mouth ulcers occasionally, random joint or muscle aches, but nothing major.

I have not suffered fatigue and live a new normal life appreciating every day and am thankful for Ibrutinib.

I think we are lucky to live in an age where research is so prominent, I am 72 and still have a lot of living to do.

I would hope my post will give hope and confidence to people that are offered Ibrutinib, and to realise that now,luckily, with CLL we do have options thanks to amazing research being carried out 24/7 by amazing people throughout various parts of the world.

May you keep well regards

Brenda

[PaulaS Volunteer]

Thanks for sharing your ibrutinib story, Brenda. It's good to hear from someone who is doing well on it, with no major problems. As you say, it gives hope and confidence to those who are being offered it, but are apprehensive.

We tend to hear more from people who have problems with Ibrutinib, because they come here looking for answers, so many thanks again, for sharing your experiences.

Wishing you all the best,

Paula

[CLLCalifornia-USA]

Ibrutinib has turned me into “Super Sally”. There is nothing I can’t do. I feel blessed it is working so well for me. Glad you’re doing well also, Brenda. Kindness always, Sally

[mrsjsmith]

Hi Brenda,

Another positive vote for Ibrutinib. 18 months and only minimal side effects 🙂

Thank you for this encouraging post. Far too many negative comments about the toxicity of Ibrutinib lately. Hope we both continue with great results.

Regards

Colette

[retired46]

Hiya, yes hope for continued well being all round,

I tend to think at 72 Id probably have aches and pains etc anyway so in fairness shouldn't put all responsibility on Ibruvika - it can become a scapegoat for age 😂😂

Regards

Brenda

[camper2]

Thank you so much for your post - I read this half an hour after a call from my consultant to say I have p11 but not p17. It looks as if I will be on Ibrutinib and it’s good to read that you can do well on that. I haven’t my full results yet and I am worried I will get aches with Ibrutinib as I found Arimidex (Breast cancer hormone therapy) intolerable. Still that’s for the future and I will hang onto your post and the hope it has given me - thanks!

[retired46 in reply to camper2]

Hiya, my first treatment in March 2018 was Chlorambucil for 6 months with Obinutizomab. By

January 2019 it was obvious it hadnt had results.

Ibrutinib was offered and I thought I have nothing to lose - life doesnt come with a safety net so we have to take a chance to fly.

So far so good, so please try and stay focussed and positive.

I send you my best wishes and regards.

[mrsjsmith in reply to retired46]

Brenda,

I am so sorry your first treatment was so short lived ! It just goes to show how individual each of us are. Back in 2007 I was treated with Chlorambucil and that kept me well for 9 years.

Wishing better results with Ibrutinib.

Colette

[retired46 in reply to mrsjsmith]

Hiya, just shows how individual we all are 👍one size definately doesn't fit all - it was fine while I was on it but nodes popped up when I stopped treatment. Glad it worked for you though for that length of time🙂👍

Regards to you.

[mrsjsmith in reply to retired46]

Long may Ibrutinib work effectively for us both.

Colette

[farber]

Thank you for such positive thoughts, I have been on Imbruvica for 2 years and my results are excellent. All the best.

[michaelmac]

Good morning

I'm glad to hear that you're doing so well. Have a questions for you.

In the fifth paragraph of your post you mentioned that there would be an

alternative should Ibrutinib stop working for you ,,,,, may I ask what that

might be

I too am on Ibrutinib I've had some problems with it. But, I think I may have gotten things sorted out. To do that I've dropped down to 280 milligrams. I haven't been doing that for long enough to figure out if it is working.

You're right that we live in a time where our types of cancers seem to be getting figured out.

Now, if we could only figure out our health system in the good old USA . Unfortunately, the price of Ibrutinib for me,,,,, is unsustainable. So, whether or not Ibrutinib Is working for me I will not be able to continue taking it for multiple years. I haven't quite figured out what to do then. There is financial help out there but it is not a given that it will be continued. So, that problem hangs out in the back of my mind.

But, all things being equal ,,,,,, I guess I would choose to be living in this day and age rather than 100 years ago.

Good luck on your journey

I hope that everyone is doing as well as possible ,,,,, looks like were finally going to get a break from our hot and humid weather ,,,,, here in Florida

Michael 74-year-old male

frontline clinical trial

relapsed and now on 280 mg of Ibrutinib

eight or nine years into CLL

[retired46]

Hi Michael,

I didn’t ask what treatment would be on offer if Ibrutinib should start to fail, as we went on to discuss my blood results.

We have a support meeting in 2 weeks which my consultant attends, I will raise the question then and let you know.

I hope you are able to have an answer to your funding, how very stressful for you.

Our weather here is extreme opposite to yours with a frost this morning.

I wish you well

Regards Brenda