7 month on Ibrutinib

[aremmick]

Had my Mayo appt yesterday Lymphocytes count is now 12!!! Hemoglobin 13.1 and platelets 195. Low dose of Ibrutinib 140 mg! I have gained weight (which I'm not happy about). So now that I have energy back and spring coming maybe I can get back to walking and eating better. I'm very happy with the results and so is my doc!!!! I put of going on Ibrutinib as long as I could, feel much better and glad I finally agreed to go on the drug. Did start out at 240 mg and has a racing heart and tingling tongue so lowered dose and I'm fine. Good luck of u if and when u need treatment!!!

[jeandorinski]

congratulations

[Kokobean]

This is encouraging. My husband will probably be starting soon. A low dose would be great but I don’t know if all doctors are willing to do that. Thanks for sharing!

[Hidden in reply to Kokobean]

start with higher dose then work down

[Kokobean in reply to Hidden]

Is that a common occurrence or does it depend on the doc and how the patient is handling the meds?

[cllady01 Former Volunteer in reply to Kokobean]

Kokobean, from people's reports it does depend on the circumstances as you present.

[Ginajetta]

That’s super! What was your wbc when you started?

[aremmick in reply to Ginajetta]

About 138,000, my main concern was the fatigue and platelets were getting low. Had a hard d time functioning the way I wanted to. So far no regrets in taking Ibrutinib. My Mayo doc says he has quite a few patients on low dose and doing great, less chance of side effects

[PlanetaryKim]

Congratulations! Sounds like you're doing really well. I too am on a low dose of just 140 mg daily (1 pill), and have been for most of my 18 months on ibrutinib. So far everything great for me CLL-wise. All blood work normal. And I'm feeling good.

[aremmick in reply to PlanetaryKim]

So glad it's working for u too. Doc told me that there's new studies being done now that look real good for our future!!!

[PlanetaryKim in reply to aremmick]

I'm quite hopeful that this is going to work out alright for all of us.

[Porter01]

That’s great news 🎉

[Porter01]

Do you go to Mayo Clinic in Rochester MN?

I grew up in Rochester. Now in Seattle.

[Porter01]

Me again😉. I’ve been on different doses on ibrutinib went from 420 to 140 now 280. Have had 2 spells a week with rapid heart rate. Dr had me get a Kardia meter that has an app on cell phone and does an ekg that I can save and print or email so my Dr sent me to cardiologist since the report said possible afib which he confirmed. I have had a lot of mouth/tongue sores and other side effects. I’m wondering if I go back down to 140 if it would help. I guess they’re going to order an echocardiogram to check for damage. My Dr said they may switch me to another medication perhaps Acakabrutinib or Venetoclax. My white count has improved also platelets. Kind of nervous about starting something else. There is a lot happening with new treatments. So will see. Did they think you had afib on the 280?

[aremmick in reply to Porter01]

Sorry was gone on a quilt retreat and didn't have time to look at phone! Yes it is Mayo Clinic in Rochester. Doc was concerned about racing heart and afib , as soon as I mentioned tingling tongue also he lowered the dose. Said has many patients on low dose and doing very well like me. Said people are prone to side effects with lower dose. Why didn't your doc let u stay on the 140 dose?

[very]

So pleased for you, great to hear positive news.

jenny uk

[Redlion]

Hi Mick, Great to hear you are doing so well, particularly on a 140mg dose. Did you start on the full 420mg and if so I would be interested to know how the dose was de-escalated. I am 10 months in with all bloods in normal range except WBC which is at 11.5k but I am having to deal with a number of side effects, although AF, so far, is not one of them thankfully. Seems there are very few consultants willing to consider lower doses unless absolutely necessary to mitigate side effects, no doubt due to a lack of data. Good luck and I hope that you continue to do well.

[aremmick in reply to Redlion]

My doc is involved in a lot of clinical studies at Mayo. He had started me out with 280 and then with the occasional racing heart and tingling tongue he lowered it. He said he's seeing excellent results in many of his patients with the 140 dose. Grateful that my doc is open minded and very concerned about side effects in larger doses.

[Lulu11111]

I am very happy to hear that your results on Ibrutinib is a success. While on Ibrutinib, have you had any side effects, and if so, would like to know about them. I was recently put on it as well. I've been on it for about 2 months now and the nodules are decreasing too and I'm feeling much better than before. I hope that this medicine continues to work. Best wishes to you while on the road to recovery and remission. 😁🙏

[aremmick in reply to Lulu11111]

Only side effect I notice now is when stressed is the racing heart. It is a steady beat not afib, I like to blame my weigh gain on it, but afraid it's just my love of food😵

[kathymac52]

My husband has been on Ibrutinib for a year now....and ALL numbers are in the normal range....first time in 5 years!!! Some joint pain....but minimal side effects....he gained weight, but needed to! He is a thin man, who had dropped 25 pounds in 6 months...so, we are happy with the results so far. His chemo was a failure, so we are excited! Going on an Alaskan cruise in May.

[PlanetaryKim in reply to kathymac52]

That's great news. Glad to hear from you. I had been wondering how your husband was doing.

[kathymac52 in reply to PlanetaryKim]

Thank you sweetie....this is a family, isn't it!

[RJR1]

Thanks for the info... seeing more and more posts about good ongoing results with reduced dose. Whenever I’ve suggested reducing mine ( 3 1/2 years at 420) my doc says “ not enough history “. I am not having any bad side effects. My numbers have been good for at least 2 1/2 years... I’m going to ask again.

Has anyone here gone to a reduced dose and then had to ramp back up ???

[krikri1989ho]

hello, just wondering, seven months on Ibrutinib is based on everyday taking the medication?

[aremmick in reply to krikri1989ho]

Yes 140 mg once a day!

[krikri1989ho in reply to aremmick]

thanks！

[OkanaganCLL]

Wonderful News!! Congratulations!!💜🤗💜

[aremmick in reply to OkanaganCLL]

Yes it is wonderful news, glad I have a caring and very experienced doc at one of the best clinics. The patient care I have received at Mayo in Rochester MN is wonderful. My husband and I do all of medical care there. It's 290 miles from my home and grateful not any further! Worth the trip every time!

[Lulu11111]

Hi Mick, glad to hear that you are doing fine on Ibrutinib. I've been on it for about 2 months now. Me and my husband like to eat out occasionally and we decided to eat at an Indian restaurant and the food was good but ever since then, I have been having diarrhea since March 16th. I want to say that it was the food, but do you think it could be the Ibrutinib? I am on 240mg a day and maybe it needs to be decreased, I'm not sure. I will be seeing my oncologist in a couple of days, and hoping that maybe he has answers. Has anyone suffered from diarrhea while on Ibrutinib, plz let me know.

Again, congratulations on your continued success with Ibrutinib.

Lulu11111 😁

[aremmick in reply to Lulu11111]

Diarrhea has not been an issue for me, but we are all different. Hope they can find the issue. Good luck to u, have to start dieting and exercising this week to loose my 18 lbs I gained. Yuk!!!!

[Lulu11111 in reply to aremmick]

Wish I could gain some weight. My last visit, I had gained 6 lbs, but now since having diarrhea for such a long time, I'm probaby back where I started and maybe have lost even more weight.

😫lulu11111

[aremmick in reply to Lulu11111]

Let me know how your doc visit turns out. Good luck!

[Cgolen99]

YAY! I have almost the same number/circumstances.

I have been almost 1 year on Imbruveca. Joint pain side affect sometimes still troublesome but I'm staying with this. My red counts have always been normal. I put it off as long as I could too. Last checked last month my WBC is 16 and ALC down to 9000. All on 140mg because the joint pain and swelling was intolerable at any high dose. Also gained weight and am working on that finally now too. Good Luck!

[aremmick in reply to Cgolen99]

Doc says weight gain is not a side effect, I think he's wrong. I never feel full and want food all the time. Never was this way before. I'll really have to work on watching what I eat, hate to exercise. Don't have a choice now. Let's home these counts continue to be good!