Malecare has an on-line support group for men with advanced prostate cancer; their loved ones and caretakers. Today, there was a post on the support group where one of the participants shared their recent experience with Provenge, including some very specific recommendations for anyone else thinking of having the treatment.
You can join us by going to: https://healthunlocked.com/advanced-prostate-cancer
I had my third and final Provenge treatment last week and wanted to provide the group with several practical suggestions in case any of you are considering it. Overall, the treatments went well, but I did experience some chills and shivers near the end of the second infusion and several hours after the third treatment. Benadryl was the solution to this problem.
I’m still totaling the cost of this process as not all the bills and insurance statements are in yet. I have a $5000 per year catastrophic deductible on my health insurance. I had used about half of that prior to these treatments, so I’m anticipating my out-of-pocket cost for the treatments will be limited to the other half. When I count my many blessings, I include my health insurance coverage.
My oncologist was hosting one of the Provenge sites. So I was able to have the leukephersis at the Red Cross blood center and the Provenge infusions at locations just a few miles from home and with nurses I already knew. The Red Cross nurses remembered me from when I was a platelets donor. More blessings.
1) Get pre-approval of your insurer before you start the process.
2) Get the catheter installed for the leukaphersis process. I was a frequent platelets donor before my cancer diagnosis, so I knew my veins were sometimes hard to find. It was not uncommon for me to develop bruising during the blood return, and we would have to stop the donation process. If that were to happen during the leukaphersis process, we were concerned it would throw off the entire Provenge schedule. Furthermore, having the catheter allowed me free use of my arms during the three-to-four hour leukephersis process. For two of my sessions, there was another patient next to me going through the leukephersis process too. However, he had chosen not to have the catheter installed and he had to keep his arms still for the entire period. The catheter is also used for the Provenge infusion. So again, this was easier than finding a good vein.
There were a couple downsides to the catheter though, which brings me to my next couple of suggestions.
3) If possible, take some time off from work while going through this. The catheter is installed in the upper chest, and the internal line goes up and over the clavicle. The surgery left my neck stiff and sore for a couple days following. I had the catheter installed on a Monday, had the first leukaphersis Tuesday morning, took sick leave on Wednesday and Thursday due to my neck, and had the first Provenge infusion on Friday. I did not have any neck stiffness after the first week. My subsequent treatments were leukaphersis on Fridays with the Provenge infusion the following Monday. The leukephersis left me a little tired so I just took the rest of those days off too.
4) Buy some Glad Press-and-Seal and use it to cover the catheter while showering.
I know I’m making getting the catheter sound troublesome, and I was very happy to get it removed as soon as my third Provenge infusion was complete. However I firmly believe having it was better than not having it because the leukaphersis and Provenge infusions went smoothly as a result, and that was the primary objective.
5) Restrict your fluids prior to the leukaphersis. You can’t get up and go to the restroom during the three-to-four hour process.
6) Bring DVDs to the leukaphersis and the Provenge infusions; it will make the time go faster. Musicals that I was already familiar with made the most sense for me. We re-watched much of the first season of Glee while going through this.
* Re-posted with permission
If you have any specific questions I will forward them on to the author. Send any questions to: Joel@Malecar.org