Provenge #3

Pretty uneventful. Good trip there, competent assistant, tingly lips again. Wife was sick and had to stay in hotel. Provenge infusion was like a family meeting. Now we wait!

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I've been following your progress and wish you the best. I plan to start the Provenge regimen soon.

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I am about 4 weeks ahead of you. Ask your oncologist how they plan to monitor and decide if and when something else need to be done.

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Thanks, Indianabob. Will do. I enjoy your posts. Mike

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My husband is waiting to be approved for the Provenge treatment. We're hoping it will be quick. Does Medicare cover Provenge? Tricare for Life? Mailhandlers? We have all three.

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@ Bob and others who have completed the process: First leukopherisis for me will be Monday 3/12. Will let everyone know how it goes. What do you do if you have to pee during the process? Will I be stuck in the chair for 3 1/2 hours?

@ ValpPat- My oncologist had a nurse-manager to facilitate the insurance process and Dendreon has programs to assist with co-pay based on financial need. Things worked out for me. Be patient but be perseverant. Apparently many providers aren't real aware of Provenge as a treatment option and don't know eligibility criteria very well. Push for answers. Good luck.

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Hey dearheart(s)- I hope things are going well for you two. You set a nice example for the rest of us. Mike

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Restroom breaks are given bedside - portable urinals. Central line helps with this process too - your hands are free to be of assistance, otherwise the nurse/technician assists you. Wasn't too much of a problem.

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First pheresis was no picnic but no problem. Great nurses Betty and Shannon took good care of me. Had lines in right arm and left hand (to allow me a bit of mobility). Pheresis process took 2 1/2 hours, was at treatment center a little over 3 hours. No significant numbness or tingling. Right arm was very sore for the last 45 minutes of pheresis but back to normal almost immediately after disconnect. Timing your hydration is key since I, and apparently others, had trouble waiting through the 2 1/2 hours before urinating. Drink lots of water the day before, not so much the day of pheresis. I was anxious going in, relieved coming out. No discomfort or problems following the pheresis. First infusion will be 3/15.

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Husband said reinfusion was simple compared to leuko process. No problems - a bit tired 3 days after procedure though.

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Is there a normal waiting period for approval of Provenge treatment? I was led to expect it would be fairly quick, but it has been nearly 3 weeks. All I've been told is that they are awaiting approval of "the insurer," which would be Medicare.

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We have not had any waiting period for approval for Provenge for Medicare. 3 weeks sounds inordinately long. Have you switched types of plans or are you new to medicare? That may have something to do with it. I would talk to the billing staff and see what is going on or ask to speak to an administrator or nurse navigator if there is one. Squeaky wheel gets the grease!
All the best

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Thanks, Researchnurse. Good advice. I just wanted to make sure this delay was not common before crashing through the underbrush. Cheers, Jim

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Turns out I had to wait until I'd had three successive rising PSA counts. Ironic, since I'd undergone reductions in PSA counts from 969 to 21 over two-plus years of chemo. But the Provenge process begins in two weeks. I'll let you know how it goes.

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@ Valpat - Medicare covers Provenge. I don't know whether your other insurance would cover the remainder. My guess would be yes. I haven't heard of insurers not covering Provenge. (Okay, I have, but in the end the insurance company decided to cover it)

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Good luck with your treatment-It is always good to hear from men as they progress through their treatment-It helps to reassure others that there is hope and encourages everyone to never, ever give up!

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Good news--there's a new abstract for the coming AUA meeting that suggests the Provenge survival benefit may be much longer than previously thought:

http://www.aua2012.org/abstracts/printpdf.cfm?ID=683

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More encouraging news. I am now at 21 months of the 2 year estimate of survival I was given by my urologist. I completed my Provenge therapy in January and still feel great. Any holding action I can get against this disease is wonderful.

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Wish you the best Bob. It's a shame the media has reported so poorly on Provenge with the "few extra months of life" line when bashing its high price.

For the men who respond, many live many extra years. In the trials there were men still alive after 5 years even though it was a very advanced population.

I hope you are a responder and get many extra years.

If only they could give it to men much earlier in the disease...

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Tim's PSA has been creeping up .1 each month. This month, however, it jumped from 1.7 to 2.6, Will be seeing the Dr. on July 24th. Any idea of what comes next?

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Dear Provengers,
I did three episodes of Provenge finishing on June 22. My good doctors say it will take six to nine months to determine how it worked. I'm planning at age 74 to get stronger without any of the debilitating chemos I took over three years. I do not plan to care about PSA numbers before December. Good luck, all.
Cheers, Swamijim

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