top | item 39046763

(no title)

anatnom | 2 years ago

I took blinatumomab in 2015 (in my late 20s). It literally saved my life. However, the risks of blinatumomab were seen as much riskier than chemotherapy. Most notably, blinatumomab has a significant risk of triggering a cytokine storm[0], a frequently-fatal immune reaction cascade. When starting a cycle of blinatumomab, the hospital required that I be inpatient for 7 days and they checked my vitals at least once every two hours. (This was _miserable_ for my sleep schedule, which is already a mess when in the hospital.) My regimen was 7 days in the hospital, then 21 days at home constantly connected to the pump, then 7 days of recovery time before starting another cycle.

At the time I took blinatumomab, I had already had unsuccessful treatments with two different chemo regimens. At the hospital system I was at, at least one failed chemo regimen was a pre-requisite for blinatumomab, as it was only indicated for "refractory" or "recurrent" cancers. I assume this is more related to the chance of acute death and (at the time) relative newness of blinatumomab compared to established chemotherapy regimens. (B-cell ALL is sadly very common in children, but this fortunately means that there is a LOT of funding research into the disease.)

After going through 3 one-month cycles of blinatumomab, it was becoming less effective, but I was able to line up a allogenic stem cell transplant which has (knock on a thousand woods) kept me clean for the 8 years since.

[0] https://en.wikipedia.org/wiki/Cytokine_storm

discuss

order

pama|2 years ago

Amazing story. Thanks for sharing. For all of us who work in drug discovery the hope is to hear cases like yours become more common and hopefully one day we can push cancer out of the range of common causes of death. There is still a ton of work to do.

Traubenfuchs|2 years ago

I read up on it. In the case of blinatumomab, it is called Cytokine release syndrome (CRS), it's very rare to have a high grade (dangerous, life threatening) CRS and seems to be survivable and treatable in the vast majority of those rare cases.

In this review, it seems like only 2% of 189 blinatumomab patients got a grade 3 CRS (requires hospitalisation) and 0% a grade 4 CRS (requires ventilation).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142489

To me as a non impacted layman, the side effects of even one of the several chemotherapeutics one seems to get appear to be much more destructive, uncomfortable and scary than the well manageable CRS from blinatumomab that primarily appear in the first cycle.

Also looks like after blinatumomab, there are now also "Anti-CD19 CAR T cells" available which are even more effective (but have stronger side effects).

I hope I don't get cancer.