Update: Second Week of Provenge underway....

[greatjohn]

it's a fascinating experience. The nurses, (women) at the facility that I am going to are so kind and so funny and so caring...the 4-5 hours I spend there having my blood circulated out and having plasma removed are (almost) enjoyable. This time we had an issue with the line that would take the blood out (my right arm) . It took several attempts with a needle that I cannot even look at to get a vein that would work...I glanced towards the end at it after the procedure was almost done...it's so big and it's Stainless Steel...so there's not give to and one has to keep one's arm perfectly straight and still. After 45 minutes of getting the "set up" done in the veins of each arm.... my partner was allowed in. I was still in a panic mode...but calmed down quickly as things began to go much more smoothly. As with the first week, I was fine when it finished and HUNGRY...so we went out for a broiled seafood platter...and then hurried home. It was time...I fell into a deep relaxing (coma-like) sleep for almost 3 hours. Woke up and ...wanted to walk the dog...but, alas, the weather is NOT cooperating here in South Florida. Life Is Beautiful.

p.s. the Third actual attempt to get a needle into a vein that would work was done by the Head of the Department...they called her in and she was the "miracle worker". It took her a few minutes...but she did it with the first "poke" she put in. I'm a little bruised and battered on the arms...but feeling lucky!

p.p.s. after the lines were in and we were underway...one of the younger nurses asked me "how do you feel?" ~~I replied exactly how I felt "like a cat on a hot tin roof". I had to explain it to her...LOL.

[kmack57]

Great John, your attitude is inspiring! Thanks

[Hidden]

I can see that i'm going to have to engage in some medical marijuana before I start my Provenge procedures. Sounds like trip.

[greatjohn in reply to Hidden]

I have been using hemp oil...and Melatonin at bedtime for almost a year...but on these more "special nights"....the ones before this kind of day...I use also a couple of drops of cannabis oil that I got also... It does help with the sleep...as one can be apprehensive.

[Tak-Druk]

I just had my veins checked yesterday... I start Provenge next week. I'm ready with my audio books. Good luck to us both!

[greatjohn in reply to Tak-Druk]

Best of luck!...my 3 nurses plus partner were so entertaining...I haven't needed anything else for diversion!

[cbgjr]

My first Provenge blood drawing session was similar. they had trouble finding a vein with enough flow, and because of the poor flow, the lines and manifolds got clogged with clotted blood and they had to do a whole new setup.

The second and third sessions were pieces of cake, I was in and out in less than 2 hours, it all depends on the skill of the technician.

Interestingly, one of the technicians told me about a rich English guy who comes to the US every year for additional Provenge treatments. He has been doing it for 10 years now. He pays out of pocket, as this procedure is not covered by his insurance or not done in the UK. Apparently, the yearly treatments work as "booster" shots, and it seems to be working for that patient.

The Provenge "one-shot" rule in the US is probably dictated by cost and insurance...?

[greatjohn in reply to cbgjr]

I spoke with the nurses and they have one client who had the Provenge done in trials over 8 years ago and has been in "remission" this whole time...and is now coming back to have a second treatment... since his psa rose a bit ...and paying out of pocket. If one gets those kind of results...what's a 100k or so? ~~ Hearing his story made me feel super optimistic about the good it can give to some. Everyone's reaction is on a scale from GREAT to NOTHING...so I read. Hoping for the GREAT end of the scale. ~~good luck with the journey!

John

[rogerwegner]

Thank you. It helps those who are planning to go this route. I hope to join you later this summer

[greatjohn in reply to rogerwegner]

as you read in the reply below make SURE to drink TONS of water the day before blood withdrawal and that morning....to have your veins in as good and as "fluffy & pumped up" state as possible...THAT is suppose to help. I'm not sure I drank enough water this last time. I'm going to really fill up with water for my 3rd (and last one)

[sgrama]

My husband went thru the Provenge treatments earlier this year in the spring and he also had trouble with his veins and they told him it was because he was dehydrated and needed to drink quite a bit for a couple days leading up to the withdrawal. But other than that he had no problems whatsoever with any of it. But while he was having the treatments his PSA was climbing like crazy and now he's undergoing Cabazitaxel Chemo treatments and just had his 2nd one 2 weeks ago tomorrow. Good luck on your journey!

[greatjohn in reply to sgrama]

I was just going to mention to the above person starting the Provenge soon to BE SURE to hydrate ...I tried really hard, but don't think I drank enough water the day before...I stop all fluids at 8 pm...that might be why....for my last one I am going to go in bloated and swollen from all the water ! ! !

[Hidden]

When I had the Provenge treatment in 2014, I was concerned about vein issues interrupting the treatments. I had an Apheresis Catheter (port) inserted near my right collar bone. It was in for a little over a month and caused me no problems. The treatments were a breeze using the port. I am now off Lupron, on light dose of Nilutamide, Avodart, Cabergoline and Metformin. T is 40 and PSA is <0.1.

Good luck to all!

[j-o-h-n]

Make sure you drink plenty of water before the procedure. This way they have an easier time pinning the tail on the donkey.

Good Luck and Good Health.

j-o-h-n Wednesday 07/11/2018 1:26 PM EDT

[David20451]

I did the Provenge treatments and found the staff incredibly friendly and warm. By the third draw I had had enough. Got through it and in retrospect wasn't really too bad of an experience.

[henukit]

Glad to hear the update. Hold on there, you tough nail.

[greatjohn in reply to henukit]

Thanks!😉

[RogerThat]

Thanks, greatjohn! I had a Provenge side effect that apparently no one else did. This was in August of 2017. I had no problems with the blood extraction because I have a port. But you know the processed blood being reinjected was of course room temperature (air conditioned), probably about 27 degrees cooler than my internal temp. So as the cooler blood was infused I began to feel cold. The nurse gave me blankets but I was shivering like crazy throughout. I had to walk around outside for about 10 minutes in the hot sun before I could drive home. For the second treatment I brought warm clothes and a heat pad. That helped but my teeth were chattering. For my final treatment I brought my down ski outfit and 3 heat pads. That worked but I still had to walk around the 90 degree heat 20 minutes looking like a moron with chattering teeth in my ski suit. Treatment in my case had no benefit.

[greatjohn in reply to RogerThat]

on my first infusion ..I too had chills. They didn't start until about the last 20 minutes of the infusion. They had to stop them...give me a blanket and some kind of drug...and they went away really quickly...and then they finished it out and I was fine. So chills are very common from what I have been reading. I'm assuming I will have them on Friday when I go back...but I'm ready for them!

r.e. treatment having "no benefit"...I've been told the benefits are "down the road"...and some people have almost none...and some are miraculously good...with everything in between. It's most like too soon to see your benefits...so try to stay optimistic!

John

[RogerThat in reply to greatjohn]

Thanks, greatjohn. I had not heard that about delayed Provenge benefits. Either way we gotta stay optimistic!

[Drcrunch]

Did you go to the center in cypress creek.?

[greatjohn in reply to Drcrunch]

Yes Cypress Creek and 31t Avenue...were you there?

John

[Drcrunch in reply to greatjohn]

Yes, I was there and they had trouble putting in needles.Poorly trained. On last leucophoresis, the vein collapsed but they decided it was enough whites cells in bag,they stopped. Reinfused at memorial hospital, no problems.

[greatjohn in reply to Drcrunch]

they have had some vein issues with me also...but I think that's due to the chemo. So far no MAJOR problem. I guess it's a learning curve...but you don't like to be in the "low part of the curve"....obviously. They are so nice, it "kinda" makes up for not being so proficient. They actually called in the supervisor and she got it in excellent...but they had me worried. It was the side that was drawing the blood out that gave a little problem on the second time (only the once, so far).

thanks for sharing,

John