Miltion

[larry54]

Hello: I am a 64 year old male. I was diagnosed with Non-Hodgkin's Lymphoma cll in August of 2017. My doctor put me on Improvica. I had some pretty nasty side effects for the first 5 months. I have not had any since early January. My blood work is always good. How long can you live with this? Is there any cure in site for this?

[MsLockYourPosts Passed Volunteer]

Million - Live with Imbruvica or with CLL? There really isn't a definitive answer for either question. There are people from the original Imbruvica trials going into their 7th year at least. There are also other new drugs and drug combinations that are working very well for patients for whom the Imbruvica stops working. There isn't a proven cure right now, but it is thought that some of those in the FCR trials who have not relapsed for 10+ years might be cured and some of those using newer drugs or combinations have achieved very deep remissions. There are a lot of reasons for hope!

[Hidden]

I asked how long will I have to take Imbruvica, and the oncologist told me basically forever and to think of the disease as diabetes or high blood pressure, something you need to take a prescription drug for your entire life. Wasn't encouraging as I hate taking prescription drugs, but.........there it is. I actually think I could stop taking it now since my blood work and scans have all been excellent after two and a half years on the drug. I suppose if I was brave enough I'd try stopping it on my own, but..........I know I won't for fear the cancer would get worse.

[lankisterguy Volunteer in reply to Hidden]

Before stopping Ibrutinib/Imbruvica, you may want to have a Bone marrow biopsy with a MRD test (minimal residual disease test). Some patients have reached 0 detectable CLL cells at 5 years on Ibrutinib, and successfully stopped Ibrutinib for several years.

Talk to a CLL expert about this.

Len

[Hidden in reply to lankisterguy]

I've never had a bone marrow biopsy. They don't like to do those when you're over 70, and I'm glad of it! Same with my mother when she was diagnosed with non Hodgkins Lymphoma at 72 her oncologist said, I know this is what she has, and I wouldn't do the bone biopsy on my own mother at that age so I won't do it to yours either, it's very painful. I was grateful to him. She had enough pain.

[lankisterguy Volunteer in reply to Hidden]

Sorry bluenet, I must disagree, I am over 70 and have had more than 6 BMBs. Most were no more painful than a flu shot, only one hit a nerve and it was like getting an electric shock from a 110 volt outlet.

I will agree that unless your CLL expert doctor will get important information from the test it is not needed, but if you are trying to decide whether to stop treating CLL, it may give useful results.

Len

[lankisterguy Volunteer in reply to lankisterguy]

The best recommendation I can suggest for BMBs is to have a NP or PA with lots of experience do it. Preferably someone that does many BMBs each week. Don't have a doctor do it, they will admit to being rusty / out of practice.

[Hidden in reply to lankisterguy]

Than I suppose it is not necessary.