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
A very good post indeed! I can second the experience this gentleman had with Provenge, however I was fortunate enough to have it covered in full by my health plan. Yes, do take the effort to make sure you know what the financial burden might be since some do not cover, although it should. Completed on November 22, 2010 I too had some chills and fever after the third infusion, but it only lasted overnight. The over all effect is yet to be seen. Two spots on my spinal column were noticed after recent bone scan with increased uptake on T-1-4-5-6 and am scheduled for MRI tomorrow and subsequent radiation. Pain? Yes, quite severe. In my situation Provenge was the right choice, but the three months waiting may have progressed the disease more than anticipated. Somehow we have to keep going, Abirterone, XL-184-something!
My husband had the 3 treatments and finished a month ago. He has good veins and did not want the catheter. A few times during the pheresis, they had to readjust positioning, but all in all he preferred that to having the catheter for all those months.
Everything went well, no problems during the reinfusion though he did get some moments of internal shakiness from the Benadryl. He drove the car back home for 2 hours after all these treatments (with a good lunch first) so you can see he was feeling fine.
His PSA kept rising during this time and now. Wonder if the Provenge kills cells and this may increase the PSA?
Anyway, his doctor started him on chemo with Taxotere last week. It is 9 years now since his diagnosis with a high Gleason score.
It is confusing, but Provenge does not lower PSA nor does it stop disease progression as seen on scans, but it does extend life!
When you refer to a catheter, are you referring to a port that is implanted just under the skin, or something else? Will a port work?
Husband had first taxotere infusion. His PSA checked a month later, went down by almost 70%. This is a very unusual good result with the first infusion. Don’t know if it is that his cancer cells are very susceptible, or it is some combination of effect with the Provenge he received in the fall.
I was diagnosed 18 months ago with a PSA of over 1000, bone mets throughout my skeleton, but no lymph or organ involvement. I do not have a Gleeson score, as a prostate biopsy now would be pointless, as would be surgery of any kind. After about 8 months of Zometa for the bone tumors (and to forestall osteoporosis) and hormone ablation I had Provenge(right after its approval), third infusion was completed in early July. In August my PSA was down by about 20% (my numbers are still in the hundreds). In September it began to rise slightly, then from October – December it more than quadrupled. Circulating Tumor Cells, however are down by 4 (from 16 to 12) and my alkaline phosphatase has declined by more than 90% (also numbers in the multi-hundreds). Recent bone scan show reduced dye uptake (i.e. improved bone condition), recent pelvic/abdominal CT scans are unchanged — no organ or lymph node involvement. The disease from all indicators EXCEPT PSA is either stable or regressing. Yet because my doctors felt it necessary to bring down the PSA they recommended Cytoxan, Taxotere and Avastin, which left me anemic and dangerously neutropenic. From the time I started Zometa to the time I took chemotherapy I had no pain, chills, fevers, or debilitiating lethargy. In other words, I didn’t feel sick until the treatment made me sick. I stopped chemo and have entered the Abiraterone trial. I question, though, the real value of PSA in a post-Provenge environment. Is PSA truly the villian if all other indicators imply the disease isn’t considered advancing by any other clinical standard?
An excellent question that actually goes to the heart of the issue surrounding PSA scores. There has never been any evidence that demonstrates that PSA is causative or correlative with disease progression or survival time. This is the very reason that the FDA does not accept PSA scores as having value in the evaluation of any new drugs or treatments. – Joel
An excellent post!!!
I will receive my second leukephersis in two days. After a “vein evaluation” well over a month ago I went with the catheter – and would highly recommend a catheter if there is any doubt at all.
I had a Gleason of 7 (3/4) in mid 2004 after a PSA of about 6 and an increase of 2 over the previous year. Had radical Prostatectomy in Nov 2004 followed undetectable PSA then slightly raising PSA. In May 2005 I had radiation and started Lupron. I had other problems related to the surgery, but that treatment worked for a while. I took Casodex for most of 2007 and don’t believe it had any effect. Had an orectamy in May 2007 and by Jan 2008 my PSA had risen back to (only) 2.33 and in Feb 2008 I started Ketoconazole/Hydrocortizone then doubled the Ketoconazole dose in late Nov 2009. I stopped KETO in Jun 2010 and that’s when my PSA started a rapid raise, 6 in late June, 15 in Sept, 26 in Oct and 52 in Dec. In Dec I was approved for Provenge, but didn’t get started until mid Feb 2011.
I am very optomistic about my future!
Good luck and thanks for the feed back. As I think you have figured out I am a fervent believer in Provenge.
Joel, I have questions!
Is there anything at all on: Continuing Keto (either hi or low dose) after the completion of Provenge? or better yet: Is there an appropriate way to stop PSA raise after the completion of Provenge? Also, I have a Hickman TriFusion Catheter, have had absolutely no problems at all with it, but am planning on having it removed immediately after my last Provenge infusion on 10 Mar. I also plan on starting a Motor Coach trip the following week. Are there any good arguments for either leaving in or taking out the catheter so soon? ….Ken
There has not been any research on the efficacy of Keto after Provenge. If you like, I can arrange for a conversation between you and a medical person directly at Dendreon.
As i am reading your post I can see some similarity to my father’s situation. Can you please tell me what was your provenge experience. Since we are not from US and Provenge is only available in US it is actualy a big decision for us.
Please if you could tell me what were your expectations from Provenge and it may be a little early but is it following a succesful path for you
Thank you very much and all the best!
Apparently Provenge has a positive effect, but it takes a while before it is really noticed. My last infusion was November 22, 2010 and just recently am beginning to notice the benefits of the treatment. My PSA has decreased from 19 to 13 in 4 months with a much better physical demeanor than before. How long will it last? Who knows, but take it while it’s there and enjoy it.
If you look at the survival curves from their phase 3 trial it is clear that the curves do not start to separate until 6 months after the treatment. That is the reason that I urge men to use Provenge sooner than later in the treatment sequence.
It’s me again – that’s KCK, aka Killing Cancer Ken, aka Ken Blutt. I’ve missed this site for a while – until my wife pointed it out again today, but I see there’s a few questions I can answer and more that I can ask. As far as the Provenge – I received two re-infusions, instead of the third (last week) I had the cathetor removed due to infection in the blood. Infection proved to be in the cathetor only, so now I’m scheduled to have new cath in tomorrow, blood take on Friday, and re-infusion on Monday. So far, my PSA has continued to climb – from 125 on the day of my first infusion to 165.3 two weeks later for second infusion, to 228 two more weeks later when the cath was pulled. I did re-start hi-dosee Keto/Hydrocort when PSA reached 228. Haven’t had a reading since, but it’s only been a week and I’ve arranged to have one tomorrow before getting cat back in. I’ve continued to feel good, but scared at what my mets may have done. Joel – yes, I would like to talk with someone from Dendreon about Keto. Bianca – I have high expectations for the Provenge. I just wish I could have stayed on Keto while starting Provenge – or better yet, started Provenge immediately when PSA was about 2 and started rising significantly while still on the Keto (last July/Aug). S Landis – I would appreciate an updat from you. I believe PSA is very important in the aspect that it tells you HOW FAST Something is happening. For me, that was bone mets above 20, now what? I firmly believe if I could have done Something last year (non chemo), while my PSA rose from 2 to 65, my Provenge would have had an easier time becoming effective. Joel (or anyone else) – are there any recommended frequency/type of scans that I should receive.
p.s. Except for the infection, I’ve had no problem with the catheter. I asked about having my last blood draw through veins only but my vein evaluation was so poor the recommendation was to NOT. I was even thinking I should leave cath in long term, but after the infection, don’t believe that a good idea any more. One other thing for all you on this web site; I recommend you sign up/ join the Yahoo Group – “Advanced PCa Malecare Group” – we cover all the range of PC questions!! KCK
The Dendreon call line is: Phone: 877-336-3736. If they are not able to adequately answer the questions you have let me know and I will try and arrange a conversation for you with their medical director. – Joel
Husband had 3 taxotere infusions a month apart. First dropped the PSA by almost 2/3. PSA up some in between chemos, but a month after third one, it is now still down to 30% of what it was right after Provenge and before started Taxotere. Now, no taxotere for a month – doctor believes in on -off dosing so taxotere-resistant cells don’t have a growth advantage when too many sensitive cells are killed off. So may be a good working together of Taxotere and previous Provenge treatment. Waiting for the abaradarone to be approved.