Treatment

[BlueGillfisherman]

Good Afternoon All;

Was diagnosed with CLL about two years ago and in the W/W stage. My doc says no treatment until late next year or early 2019.

What is the first type of treatments and how bad are the side effects? Not knowing is stressing me out.

[AussieNeil Partner Administrator]

What treatments are available to you depends to a significant degree on three factors in this approximate order:

1) Which country you live in

2) Your specialist

3) Your CLL genetic markers

2 and 3 are influenced by how experienced your specialist is with CLL and what access they have to clinical trials.

With respect to side effects, while those shared by others in this community and in the published results from clinical trials can be a guide to what you might have, we really don't know until we try the treatment ourselves. Remember that when you read of side effects shared by members, that you are getting a very biased presentation of the percentage of those experiencing side effects and their severity. That's because members very rarely post to share when their treatment is going well. Most posts are from those seeking tips on how to manage unpleasant side effects...

Neil

[BlueGillfisherman in reply to AussieNeil]

thanks for your help, just a little worried

[moon21]

Hi there,

I think I understand what you're saying. I am in the U.K. And treatment here is chemotherapy with an antibody drug added in. Unless you have access to a clinical trial, in which case you can go for immunotherapy drugs if you're chosen.

I too am in a dilemma and don't know whether to enrol on a trial or not. It would seem which ever path has side effects but it is important to remember that you will hopefully not get every single side effect listed. The long list of possibles only adds fuel to the fire for worrying. Like the other poster said, bear in mind people generally post when things aren't great.

Do you have the option of a clinical trial or the option to use immunotherapy rather than chemo? Where are you?

[AussieNeil Partner Administrator in reply to moon21]

Yes, where you live determines not only whether you have access to non-chemo treatments, but which one(s). Likewise if you only have access to chemo based treatments, what's approved/funded for use varies by country and even by state in countries such as Canada.

(Incidentally, welcome to our community - I notice that you have just joined. Also, note that you can always edit your posts and replies by selecting the 'v' under your submission and selecting 'Edit'. You might like to do that to correct your middle paragraph, which I suspect autocorrect messed up .)

[BlueGillfisherman in reply to moon21]

I tend to forget this is a world wide support group, I am in the United States of America. I do not know if there is a clinical trial available. My Doctor is a teaching professor at the University of Kansas. I will ask him on my next visit which is next month. He did tell me there are several new and better treatment options.

Just a side note as I notice many of you are in England, my mother was a war bride and married my father during/after WW2. My wife really wants me to take her to England for a visit

[JA14]

Wish you all the best. Just to second what the admin mentioned, I started immunotherapy (Iburtunib) five weeks ago, and thanks to God not much side effects thus I just reply rather than posting.

[BlueGillfisherman]

Thank you so much

[Hoffy]

I am on imbruvica plus Venetoclax on a clinical trial out of UC San Diego. The trend is towards targeted drugs if you can get them depending on where you live.

The CLL Society Website says is helpful .

Be well.

[W00dfin]

Fishman

I am 3+ months into Ibrutinib and managed joint pain with ice packs plus salonpas pain patches for the first month and a half. Then it pretty much stopped. Based on what I have read on this site, I seem to have fewer side effects than most. So I am endorsing Ibrutinib as one option with the advisory that I already had FCR in 2011 followed by 6 years remission. Be cool 😎

Woodfin