starting Ibrutinib today

[fugazi]

Hi folks,

I hope you're doing well.

I'm about to start Ibrutinib today (3 tablets x 140mg) I'm hoping my haematologist will reduce that after a while?

I've read through the pamphlets etc but thought I would ask this lovely community what to expect and any tips with food, drink, exercise I (see weight gain is pretty common).

Anyway, I guess I'm just looking for a bit of feedback. I'm 53 and feel quite well currently, so I'm hoping to tolerate it well.

Thanks and all the best to you all.

[MsChief]

I have been on Ibrutinib for several years. Initially I did poorly - due to side effects - and the oncologist stopped it. I am in the U.S. - went to Dana Farber in Boston for a second opinion. I did not want to go on a clinical trial so was on cortisone for a year until the MD said I was dying of CLL so we decided to re-try Ibrutinib at a dose of one pill 4 days a week and 2 pills 3 days a week. I have minimal side effects, no lymph node swelling. I am on IVIG infusions every month to prevent chronic upper respiratory infections. Best wishes as you start your treatment journey. MsChief

[fugazi in reply to MsChief]

Thanks MsChief, sounds like a good protocol. Much appreciated.

[Sushibruno in reply to MsChief]

im glad it worked for you. I wonder If they do this more often. It sounds like a better treatment plan. I rather do that and take a break then to take them everyday.

[MsChief in reply to Sushibruno]

My journey has not been without complications and I have never been in remission. I am happy to be stable on the medication for however long it works. 😇

[Sushibruno in reply to MsChief]

😇😇

[111853]

I just recently started Irutinib. My first week was a little rough. I was extremely tired and began bruising almost immediately. The bruises were quite large, numerous and in some cases very tender. The bruising has subsided but is still a concern. I just have to be careful. I also bleed much more easily so have to be sure I apply plenty of pressure after blood tests. I have lost about 8 pounds but I believe some of that was my huge spleen shrinking. I also have had some diarrhea. Overall, I feel much better than I did before starting the drug. Good luck on your journey.

[JoannG]

After many years on W&W I started taking Ibrutinib 16 months ago (3 x 140mg). Initially I had some bruising, I’ve gained a few pounds and I had recurring but manageable heartburn . That being said, the effect it has had on my blood counts has been nothing short of miraculous. I didn’t realize how little energy I had until I started to feel so much better after a couple of months on Ibrutinib. Drink lots of water and stay as active as you can. Wishing you well!

[Rmjersey]

Hi, I was diagnosed four years ago aged 58. Having just retired, I went for a cholesterol check and the GP did a full blood test as I hadn’t had one for the previous 4 years. It reported a lymphocyte count of 30. Six months later it had increased to 80 and with my platelets dropping, my consultant started me on 420mg Ibrutinib. That was just over 3 years ago. Initially my lymphocyte count peaked around two months after starting Ibrutinib at 460k. After 12 months, my lymphocyte count had dropped to 76k and after 24 months it was 13k. It’s now 7k - still very slightly higher than normal but a fantastic result. I’ve been quite lucky as regards side effects. No weight gain, muscle aches occasionally, leg cramps especially calves, occasionally, mouth ulcers about once a month which last a week, and during the first year, several months of diarrhoea. Worth monitoring your blood pressure. Mine was regularly 120/80 before I was diagnosed but the ibrutinib has increased it and after 12 months of taking it, my GP put me on blood pressure meds which is holding it steady. So, three years in I can say that so far, Ibrutinib has been absolutely brilliant for me. The ibrutinib must however be taken with a large glass of water and a huge dose of positivity - and its staying positive that is the best advice that I can give. Best of luck to you.

[CLLCalifornia-USA]

Hi Fugazi,

I have been on Ibrutinib for nearly 7 years with only positive results. It gives me the opportunity to live a full life. I take mine at 7 in the evening and that has worked for me. I set my phone alarm so I don’t forget. Best of luck. Sally

[W00dfin]

I took the full dose for 3 years and experienced episodes of joint pain in my knees. We have ice packs that stay in the freezer and they were helpful in relieving pain used in 30 minute sessions. You have wrap them in a towel.

Best wishes!

[Jacksc06]

HI Fugazi. I have been on ib for several years and it has transformed my life so much for the better. although not without complications but nothing major. I bruise easily small cuts bleed a lot and fatigue. Wishing you well on the next stage of your journey. P.s. you must drink lots and lots of water!!.

[Northland]

I have been on Imbruvica for 2.5 years (I'm 63) and felt great within 2 days of starting treatment after being on W&W for a year and being badly fatigued for most of that time.

Now I feel quite good (we hike 10 to 20km per day) but also suffer from shortness of breath, occasional fatigue and cramping in my legs and hands, rashes on my shins in the first few months along with toenail fungus that occurs with 70% of people on Imbruvica according to the pharmacist who dispenses the meds. My blood work is perfect and my hematologist is happy with that and doesn't have any concern regarding the side effects of the Imbruvica. I wonder what symptoms are caused by the CLL vs Imbruvica side effects and of course aging.

I take calcium magnesium supplements daily and drink a lot of water and green tea. I found taking my Ibrutinib at the same time in the evenings worked better for me than taking it in the mornings.

Good luck with the meds. I hope they work well as well for you as they do for me.

[fugazi]

wow, thanks everybody, very much appreciated. Great comments.

[Kingfish6]

I tolerated ibrutinib for 2 years, had some joint pain (actually was a hip that needed replacing), went down to 2 pills; all is fine. With my labs good & uMRD, I don't want to stop treatment. Doc agreed. Asked about going to 1 pill/day. She didn't agree. A doc indicated that the 3 pills were pharma tested, but 2 eventually might work for most.

[fugazi in reply to Kingfish6]

Cheers Kingfish, exactly what I was wondering.