Need a summary of treatment options

[Myfavoritecat]

Can someone refer me to an article or report that summarizes in plain language the various treatment options for CLL. I’ve read a lot of posts of people on this site who are on various treatments and are quite knowledgeable about them. Although I’m still in watch and wait status, I want to be prepared to ask about treatment options when/if things change. Thank you!

[Jm954 Administrator]

Note for responders - this lady is in USA.

[cllady01 Former Volunteer]

The following was posted by a member and gives a good overview of sequential and combo treatments of novel agents as of Oct. 2019--- avzuclav

healthunlocked.com/cllsuppo...

Not sure it is in "plain" language, and since you have read posts here, I may not need to remind you, but just in case---treatment choice is dependent on the patient profile, sometimes age, and co-morbidities. So, while there is info about what is available and being used in treatment, what will be offered you will not be known until the time comes. AND there are current variations of BTKs in trials that may be ready and prove to be a possibility at the time of any treatment you may have.

[Myfavoritecat in reply to cllady01]

Thank you very much!

[cllady01 Former Volunteer in reply to Myfavoritecat]

You are welcome.

That contribution is listed in PINNED POST which is a selected list by Admins. that gives us access that doesn't require a web search. Just click on the "see all" beside the title PINNED POSTS to have the entire list with some description be at your fingertips.

[Rex12]

Problem I found is that whilst you can be a full bottle on treatments, what is actually available in each country / health system is different. I watched a great presentation comparing treatments to modes of transport, ie horse and buggy old chemos and flying cars the newer treatments. But it does allow you to advocate for yourself!

[Hidden]

The CLL Society has all this kind of information on their website, cllsociety.org. It is updated reguarly. The Lymphoma and Leukemia Society, lls.org also has lots of information. Both offer "ask the nurse" and "and ask the dr" features, any questions are answered in a timely manner. I find them both invaluable. Lots of educational programs also, one about blood tests and what they mean is coming up on the cllsociety site.

[Myfavoritecat in reply to Hidden]

Thank you!

[cajunjeff]

Myfavoritecat, I see from previous posts you are a 75 yr old woman living in the US with stage zero Cll. Your treatment options will likely be both informed and limited by your age. The main treatment for Cll over the last fifteen years, fcr, is a type of chemo not typically given to 75 yr olds. There are milder sorts of chemotherapy, but I doubt most doctors would recommend any sort of chemo, so almost all chemo options are effectively off the table. That’s not because a chemo drug like Bendustamine would not work for you, but rather because you have better non chemo options.

There are dozens of clinical trials looking at all the novel drugs used to treat Cll such that the by the time you treat, there will likely be more clarity.

If you started treating today in the US, my guess is your treatment recommendation from most Cll doctors would be a simple one, single agent acalabrutinib. It’s an easy drug for most people and resistance early on is rare. Acalabrutinib might be the only drug you would ever need, it could easily take you out ten years or more from the date you start. You ever reason to hope for a normal life expectancy being stage 0 Cll at age 75.

I am no expert, this is just my educated guess.

[Myfavoritecat in reply to cajunjeff]

What wonderful insight you have. Thank you for taking the time to explain.

[Big_Dee]

Hello Myfavoritecat

There are so many different drug combinations for CLL treatment in US trials that by the time you need treatment, your decision will probably be impacted. I have only had CLL for 4 years and am about 3 years post treatment and almost none of todays treatment choices were approved for first line 3 years ago. Treatment in trials will be dependent on location of trials from you and your financial resources. Best source of information on possible treatments is to follow this website and collect information for if you ever need treatment. Blessings.

[Myfavoritecat]

Many thanks! Good advice.