Marked improvement on Imbruvica

[scorpio74944]

Due to my 17p deletion, my doctor started Imbruvica 4 months ago. My CT this week has shown marked improvement from the last one, my lymph nodes greatly reduced in size. Also my lab values are best they have been since before my diagnosis 8 years ago. We are excited about this response, but not sure what to expect. My doctor says he's not sure how long I will remain on the meds. Has anyone else had this experience?

[CCLandwell]

That's great new, wishing you continued great results.

[wroxham-gb]

Cannot help with how long on meds. Great news about lymph nodes and lab values.

Best wishes.

Sue

[dou123]

Hi I to had 17p and was trailing apt199 at the christe hospital in Manchester I'm in full remission now they never told me I asked the question and they said as long as I need them tablets I could have the propley rest of my life or wen trial ends hope you stay well and good luck

[eggemma in reply to dou123]

Happy for you. I also have 17p del. I am on idealisib since March. My blood test results are getting better. For how long did you take 199 apt?

I hope that I will get remission.

kind regards

Emma

[dou123 in reply to eggemma]

Hi I started the drug in 2014 was on five week dose 20 mills till up to 400 mills on first week on twenty mills it was killing cancer cells and so on been in remission now 18 months maybe on them for rest of my life still better than a bone marrow transplant so like I said I'm in good health so hope you stay well and good luck in everything you do

[scorpio74944 in reply to eggemma]

I have been on it for 4 months now. I'm having a lot of side effects are far as muscle cramps and bones aching, but nothing I can't live with.

[Hidden]

You will remain on Ibrutinib until you develop side effects that are not tolerable or until the drug stops working and the disease progresses. In other words, if yo are lucky, you will take Ibrutinib for the rest of your life, or until a better treatment is available.

[scorpio74944 in reply to Hidden]

Thank you for your response!

[LynnB1947]

I started treatment for SLL at MDA in January 2014. The first drug combo (rituxan & revlimid) did nothing so we changed & now I'm getting imbruvica/ibrutinib, and have been on it now for 1-1/2 years. Affected lymph nodes are all greatly reduced in size - about 2/3 & bone marrow involvement has dropped from 40-70% to 20-30%, and my dr says that the bone marrow should continue to improve.

My blood counts continue to look great & main side effect is fatigue. Looks like it will be 3 pills of imbruvica from now on unless better options become available.

BTW, the CLL conference at MDA this last weekend was great with lots of good info. Videos should be available on the Patient Power website in a week or two.

[scorpio74944]

Great to hear how well you have responded! I hope my story comes out as well as yours has. My main side effects are muscle cramps and aching bones, with some fatigue at times. But hopefully they don't get worse. I'm having a hard time riding my bike (motorcycle) due to my hips and legs cramping as well as my hands. But I'm thankful for the progress I have made with this med. Thank you for your response!

[LynnB1947 in reply to scorpio74944]

My hands are cramping now even as I try to type a response. It seems any physical exertion spurs a cramp somewhere .... well, maybe not all the time but I've had had cramps in the legs, feet, hands, torso, etc. Also, if I do heavy physical exertion like carrying in the 50 lb bag of dog food yesterday, I may have sore muscles and/or joints a day or two later, and they will remain sore for a day or two. When I go out weedeating and mowing, I follow-up with a good nap 'cuz I'm worn out.

Hang in there Scorpio ... we're fortunate to be on a wonder drug. Some patients are out to 4 years now on it & still doing fine. Hope they can find another drug to add to it that will put us into remission & off medicine.

[scorpio74944 in reply to LynnB1947]

You are right! I will take the side effects over no treatment any day. I had a busy night last night with Halloween activities at my house and I can barely move today, lol! But I still feel great. Thanks for your response!

[Graham2222]

As is said above, Ibrutinib needs to be taken until progression or you opt for something else. There is evidence of poor research outcomes for those coming off it prematurely for one reason or another. After a year, I am approaching full remission, and I think that's how long it generally takes. But I'll still keep taking it...

[scorpio74944]

Congrats on approaching remission! I does my heart good to hear a story such as yours. Wishing you all the best!