Related to the earlier post by Yalokin ; Bond et al. were studying whether BTKis could decrease the incidence of secondary primary malignancies in CLL patients. They concluded that neither ibrutinib nor acalabrutinib altered the incidence of secondary primary malignancies in CLL patients.
" Impaired immune surveillance mediated by malignant CLL cells appears to contribute to the increased SPM risk in CLL patients, and given that treatment with BTKi leads to effective and in many cases durable CLL disease control, we sought to determine if rates of SPM remain elevated in CLL patients receiving these therapies."
In other words we don't know as of yet if these btk's will cause SPM because it's too early to tell? And having an immune compromised system puts us at a higher risk? This makes me wonder if I should start treatment sooner then later.
Sushi, that’s something you need to discuss with your doctor. There are many factors that come into play. There are so many treatments available that now your doctors can recommend a different approach depending on your particular situation. Best regards
The drugs will not cause SPMs. They will not prevent them either. Lots of people get cancer who do not have CLL. Some with CLL get a secondary cancer. Lot of CLL people do not. The curse of humans is mulling over the future which might not even happen. Yesterday is history, tomorrow is a mystery. All we have is today. Make the most of it and don't waste your time thinking about what ifs. You'll face what you need to face when the time comes.
Sushi, quite a few folks have been on BTK inhibitors for years and there is no evidence that the inhibitors have led to an increase in cancers, or have reduced the incident of cancers.
What will be quite interesting to see is if in the future folks who achieve long-term uMRD and are off treatment will have a reduced risk of secondary cancers, ie will their immune surveillance be restored such that their cancer risk equals that of the general population.
I know we need to be informed but when I saw the original post, I cried for an hr. I had to take my meds to calm down. I don't know what's gonna happen in the future but it's still very scary.
Thank you, GGirl & Neil for addressing the concerns. Two things missing in general studies - are genetics and dosages of BTKi. (Ibrutinib lowest is 70 mg).
Have you seen many studies including -
Germline genetic mutations and NGS (next generation sequencing) of secondary neoplasms of patients on BTKi for CLL?
Please send links if you know of some.
It seems now to be more often discussed in seminars and podcasts in reference to their significance in BTKi and CLL and secondary neoplasms or SPM. (Secondary primary metastasis)
Recently, I watched the Peer seminar (MSKCC, Harvard, UNC & Columbia) discussing all the updates on the trials of the last 10 + years for CLL tx. (Connected via
CLL society - 100 plus slides - patient friendly if you read all the great links in this forum.
Only the recent VJ HemOnc podcast addresses genetics - and NGS.
We are in a family germline genetic study
- 12 cousins- ATM mutation- 9 have had multiple neoplasms associated with the mutation (11q is ATM mutation) - and one of my secondary neoplasms DCIS -has shown an emerging variant via the NGS.
Knowing your genetic mutation will get you aggressive surveillance and immediate intervention. You will have to advocate but now a box can be checked to justify the expensive tests and scans.
Yes, needed clarification. Whereas CLL patients may be at greater risk of secondary cancers, with the odds that 1 in 3 of USA masses will get some type of cancer in their lives. I really don't need a secondary cancer but would not be shocked to get additional cancers. Not something I will dwell on, just see dermatologist regularly for checkups and etc.
That's lovely, speaking as an aggressive thyroid cancer and breast cancer survivor. 😳 I am constantly worrying about the nodes in my neck swelling from relapsed thyroid cancer. My old Endo put me in for two nodes dissected. Doctor only did one. On my jawbone (which had been my main concern) until I realized the other was in my neck on the cancer side and where i have the most issues with nodes. And guess what? He only dissected the jawbone node and gave me no good answer as to why he didn't do the other side. Has been on my mind since. Why didn't he do it. It was a nothing thing. In and out with a bandaid. Would have given me piece of mind.
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First results of a head-to-head trial of acalabrutinib versus ibrutinib in previously treated chronic lymphocytic leukemia.
Acalabrutinib exhibits comparable efficacy, superior safety to ibrutinib for CLL (finally!)
proactive GP to inform of diminished vaccine response
