For a couple of years I have been anticipating taking Provenge immunotherapy as my next treatment. Now that I have a new oncologist, after a relocation, I am told that the University of Rochester Medical Center will not do the leukapheresis (separating the white blood cells from the rest of my blood) necessary for the treatment as it would be a conflict of interest!
They will infuse the white blood cells back into my body once they have been sensitized to PC, but I have to go to the Red Cross in either Syracuse or Buffalo for the 3 hour leukapheresis. Provenge therapy is offered by numerous private oncologists in Rochester and I can't believe they all require their patients to drive at least an hour each way for the leukapheresis part.
My oncologist's nurse was completely flummoxed when she told me about this impediment to URMC PC patients receiving Provenge therapy.
This is especially bizarre because URMC has an entire department devoted to immunology research albeit focused on, it appears, pancreatic cancer, melanoma and breast cancer. But the first stage of immunotherapy is always leukapheresis, so that procedure is done at URMC.
This situation seems wholly unethical to me, to make proven life extending, low impact, therapy difficult to obtain. I will ask my oncologist for a referral to a local who offers Provenge locally but I'm not very optimistic that he will be able to do that.
Done with rant. Needed to get this off my chest.
Written by
Miccoman
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It's usually done by the Red Cross. I'm surprised there are none in Rochester. I didn't think it had anything to do with "conflict of interest." The Red Cross is set up for it.
I may be mistaken, but I was given the impression that Moffitt and Florida Cancer Centers, both in Florida, do it all in house.
There is a Red Cross center in Rochester and they do platelet separation, which my cousin goes there for, but I spoke directly with them and they do not do leukapheresis -- I have to go to Syracuse or Buffalo for that particular procedure.
The only conflict of interest I can imagine is that the URMC in house facility is only for their immunotherapy research. My oncologist's nurse stated that they do do leukapheresis at URMC but will not do it for me. She was quite put out about it and the lame "conflict of interest" excuse. Sigh.
It is not uncommon in my experience to run across doctors who consider men living with metastatic disease as virtually dead so not worth expensive procedures -- Dr. Michael Poch, at Moffitt, who removed my kidney in 2015, told me as much to my face and then showed me how much pain a surgeon can inflict on a victim they do not think worthy of treatment. I will never make that mistake again.
I'd try not to take it personally. The basic availability of leukapheresis-capable centrifuge collection machines is typically the limiting factor as to where the Provenge cells collection process is done. Not every blood donor lab nor even every Red Cross facility has or runs these machines on a regular basis, with the proper technicians/staff on hand in case one might have an adverse reaction during the collection process, which easily lasts up to 3 hours long, with constant monitoring.
Anecdotally, I got Provenge several years ago. While there were a handful of places that would do the later reinfusion of my treated "Provenge" cells, there were fewer places they used to do the involved leukapheresis process with an available machine, and also to handle the very tight shipment & delivery & handling constraints associated with packing the gathered bag of collected cells, and working with a courier delivery pick-up to have them priority shipped for processing at the main Provenge facility. My choices were a Red Cross center in a midsized city about 45 minutes away from where I lived, and a larger, more experienced Red Cross center about 2 hours away in a major metropolitan area serving major hospitals/centers where I was consulting with my "specialist" who was coordinating my Provenge treatment. The "provider" almost always has a preferred "go to" place where most of them coordinate for the leukapheresis procedures.
While it did involve some more travel time, I considered the benefits of getting the service at a higher-volume, more experienced place and decided it was worth it, overall. And it was only for a few times. I did, however, appreciate having a companion/driver with me, just in case. and to keep me company. These days there might be some COVID restrictions, though.
You might also be interested in this related article which happens to mention some general information and "Tips" about getting leukapheresis collections.
I do understand your annoyance but for me a one hour drive would be great it is a 4 hour drive to my oncologist and a 1.5 hour drive to the nearest little hospital. ad another 1 hour plus parking if i need to go to San Francisco.
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