Provenge treatment failed, in 4 attempts to harvest cells, only 1 cycle was successful. Doctors aren’t sure why failed, apparently failure very rare. First condition Sarcoidosis, an inflammatory disease which in my case affects the lungs, am on Trilogy inhaler, and also have the disease inside my upper spinal cord, also very rare. The inflammation in spinal cord caused some damage, mostly increased neuropathy, hands and feet, and has been treated with heavy duty steroids, currently on 10 mg prednisone for maintenance, do regular MRI’s currently will contained. Dendreon believed no good pathway to continue the treatment.
Second issue is MDS (Myelodysplastic syndrome), affects the blood marrow and so far, hasn’t been a significant issue with the exception of being a minor contributor to some low hemoglobin and low platelet count the times.
Dendreon does not believe this is the issue.
Good news is diagnosed September 2017 PSA 147, multiple mats legs, hips, ribs shoulder. Luprilide + Bicalutamide dropped PSA to under 0.1 nearly 3 years. Major spots in legs and shoulders zapped. Later bone scans continue to show cancer will contained.
PSA crept up to 0.12, scan showed spots on spine and leg, treated September 2020 with radiation, PSA dropped to 0.07. I know I need to be grateful to the good Lord for this response.
In Discussing my treatment options my MO has told me from the onset because of the MDS problem, they’re not sure they could get me successfully through chemo. Additionally, I talked to the RO who believes XOFIGO will be difficult to tolerate because of the MDS problem. Additionally, because of these other conditions have been advised I will not be accepted in any clinical trials.
Key Presenting questions:
•Has anyone had experience with this type of Provenge failure?
•I have seen clinical trials are being done in Europe to see the benefits of only one or two cycles of Provenge, any thoughts of the benefit of the one cycle which was successful?
•While grateful with the correct treatment response, am concerned about future options as needed, any guidance 4 next steps?
•Have significant confidence in both MO and RO, both willing to think and work outside the box, any advice for my next appointment in early January with MO?
I thank everyone in this form for the long-term support and information you give to many.
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Bigpike
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I'm sorry they weren't able to harvest enough dendritic cells. I know one patient where they had to re-do one leucopheresis - they just waited an extra week until he manufacti=ured more.
Why aren't you using Zytiga, Xtandi or Erleada? Is it because of the MDS?
Three issues I haven’t gone with Zytiga, Xtandi or Erleada. First, have issues with balance because of neuropathy have had several falls, fortunately with no serious damage. MO concerned may exasperate by adding these meds. Second, there is some concern, but not a lot of documentation, that adding treatments could rev up the MDS. Third, was the excellent responsive with first-line treatments and given my other challenges to milk these is much as possible. Have had several conversations from day one with MO and have decided to hold off, in most instances MO advocates early use of these meds.
Also have been blessed with a case review from Mark Moyad from University of Michigan who while generally would advise adding these medicines earlier believes in this case holding out is a better option.
For the last effort at Provenge waited four weeks from the last collection, and the Dendreon altered the processing to see if a better result could be obtained, just didn't work.
How in the world did you manage to obtain an appointment with Mark Moyad ? I receive my treatment at University of Michigan and have been trying to connect with Mark Moyad for three years!
Sorry. My meeting with her was a joke. I indicated I wanted to be treated at the U of M since they kept a friend of my alive for 13 years. She said go out and fin a oncologist. I said can you refer me . she said any one will do they are all the same.
Was personal appeal and prayer, my cousin chairs a medical department at U of M, he loves Michigan football, we have a mutual friend who was former coach, and we were both guests in the past on the 700 Club. He is able to respond to very few requests.
Update on how I obtained Dr. Moyad connection- Did some online research into his background and interests the best I could find. Then sent a personal letter requesting an appointment. I mentioned my cousin who heads up one of the medical departments University of Michigan whom he did not know but believe carried some weight and my cousin also contacted him directly asking if there is any way that he could at least review the case.
Second, I learned he’s a big Michigan football fan and I had a friendship with a former coach and mentioned this in my letter as an effort to connect personally.
Third, in searching his background I saw he had been a guest on the 700 Club with his book on natural supplements, so I mentioned in my communication I had also been a guest in the past.
Fourth, I think he was also intrigued with my other conditions, from the get-go I have been an “interesting” case.
My wife and I committed the process to prayer and the request happened to hit him at the right day, and he favorably responded. He told us he is only able to respond to about one of 2,500 requests. He spends most of his time lecturing around the country, researching and takes on very few outside patients. As much as I like to facilitate appointments, I’m not sure if I would have any success getting an appointment for others, he was very clear with me if I ever gave out his private contact information I would be deleted from the system I would hear from him no more.
Standard bone scan, showed very little cancer after last zap. I get MRI, full scans every 3 months because all conditions. Have not done ultra sensitive scans.
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Port in chest for Provenge?
Starting Provenge tomorrow
Doctor is suggesting Provenge 
