I've tried to search the pinned posts and did a general search but to no avail. I'm wondering if there is a resource table/rubric that exists that outlines clearly "if this is your CLL/SLL genetic profile, these are your specific treatment options." As I understand it, depending on the genetic profile of your CLL/SLL different treatment options are indicated. For example, not everyone is a good match for ibrutinib as a first line treatment, etc.
thanks in advance
Heather (BC, Canada)
Heather, have you read this post? healthunlocked.com/cllsuppo...
The referenced iWCLL Guidelines covers what you want.
Neil
Thanks Neil. I’ll check it out.
I found the NCCN Guidelines for Patient to be very clear and concise - not to mention very up to date!
It’s a guide published in 2019, so yes it’s very up to date. And as I read it, Ibrutinib is preferred for all types of Cll.
There is still an argument that people who are young and have mutated Cll have an excellent chance of being cured by FCR (some get twenty year remissions), so FCR is in the discussion for that group.
The counter argument is that people with good genetics might get 20 year remissions with ibrutinib and venetoclax, with less toxicity. It’s the known vs the unknown.
Right now for anyone starting out, just going with single agent ibrutinib could be a sound plan. Many starting out that way might be adding venetoclax later, if it gets broader approval.
From everything I’ve read so far I agree with what you’re saying Jeff. I had my BMB on the 2nd and get the results on the 16th. Perhaps the bigger question is what my province will cover. I understand that Canada is about 18 months behind the US. I found the info once but haven’t found it again today.
Every province is different the current BC information is in my post to Jeff.
Canada and GB may be intentionally behind because FCR is less expensive. Financial Triage.
Hmph. Probably true
Overall, I have mixed feelings about this. Certainly some financial triage is necessary at some point. We do not have infinite resources. But as a patient with a serious disease, I would like the level of expense that would be allowed to keep in decent shape to be fairly high.
I do understand $150k saved on me and spent on pre-natal care and vaccines for poor people would raise the countries average lifespan more than adding a year to my life would.
In GB, the expense per "quality life year" is limited to about $70k. Here in the US it seems to be more than double that. One reason we get less life expectancy for our expense compared to GB.
For all cancers. It is possible for patients to also get access, even though it is intended for docs. I just said I was a researcher, which is actually true. It can be downloaded, but not sections cannot be copied and pasted, which is a bit inconvenient if one wants to discuss a section with someone.
Are you referring to the BC Cancer Agency site?
No, I was referring to the NCCP site mentioned above. It has guidelines for Breast Cancer and Leukemia. We are dealing with both in our family and I have a copy of both guidelines. It may or may not include Canadian docs in its committees that write each one. It would be easy to check.
Heather, I think Ibrutinib is a good front line choice for all types Cll. The treatment landscape is changing so fast, if you are looking at data from a year ago, it might be outdated.
My understanding is that recent studies have shown Ibrutinib is good for everyone. There is an argument that for people who are young with very good genetics, like mutated IGHV, that FCR (chemo) might be the best frontline choice. Even with good genetics, I would consider ibrutinib because it’s less toxic.
When the data matures from ibrutinib/ Gazyva and ibrutinib/venetoclax trials, we may see these combos outperform FCR.
As it stands now, I think an argument can be made that single agent ibrutinib is a good starting drug for anyone with Cll, at 7 yeasts out very few folks have progressed on ibrutinib when used as a first treatment.
Heather is in BC, Canada where Ibrutinib has restricted access and funding first line...
The restrictions were broadened last month, in italics,, but some restrictions are still in place...
ELIGIBILITY:
Chronic lymphocytic leukemia or small lymphocytic lymphoma with high risk disease e.g chromosome, 17 p deletion and no prior therapy
Chronic lymphocytic leukemia or small lymphocytic lymphoma patients ineligible for FCR who have received no prior therapy (FCR ineligible is defined as patients over 65 years of age, and/or a strong clinical reason that the patient is ineligible for FCR)
AST/ALT less than 3 x ULN
A Compassionate Access Program (CAP) approval is required prior to the initiation of treatment.
bccancer.bc.ca/chemotherapy...
Its important to give accurate information... Jeff
~chris 🇨🇦
Chris, I did give accurate info. I was responding to Heather’s assertion that not everyone is a good match for ibrutinib as a front line treatment. That issue is an independent issue of whether ibrutinib is available everywhere.
Its important not to accuse people of giving bad information who are trying to help. Your point could have been made without the condescending admonishment. I only echoed what the guidelines Neil linked to set forth. Ibrutinib is appropriate frontline for all types of Cll. Eligibility in different countries is a separate issue.
Good luck to you Heather, I am sorry if you found anything I wrote misleading. Jeff.
Thanks for the link Chris. That’s what I was looking for.
Also important is whether you have cardiac issues, as ibru results in afib in some people, and can produce joint inflammation, which might be a consideration if you already have this issue.
CLL Society web site has a lot of good information. Maybe not exactly what you are asking for but likely close via many posts,
cllsociety.org
Be well,
Hoffy
Thanks everyone. Like so many of you I feel like I’m sitting in limbo - waiting for my BMB results to come in (I have SLL so my bloodwork is all normal). Once I have these results I can find out more directly what treatment will be available.
It seems that even though ibrutinib is turning out to be the best first line treatment, the other standards of the past few years also seem to have good results with fairly good tolerance.
I did look into whether there are any trials I can join but apparently not in my location at this time.
Personalized Treatment Options From 5 Experts for People With CLL 
Can a SLL patient become CLL? 
Research survey on CLL/SLL
