Today had a port put in and it's quite a contraption...will have provenge..first one of three next Friday. nervous.Any suggestions sidNW

[sidnw]

Today had a post put in.quite a contraption will have Provenge treatment #1 next Friday.then 2 more in few weeks.Nervous! Suggestions anyone,

SidNW

[ctarleton]

You probably have a typo there, and you meant you got a "port", to facilitate the 3 hours or so that you will be hooked-up during the leukapheresis procedures at a blood donation center that will precede each of your subsequent Provenge infusions several days later at the medical infusion center.

I did Provenge in the Fall of 2016.

Many men use their very good accessible veins. Others have problems with the veins, but muddle through with using them anyway. Some are evaluated ahead of time and have a port or a PICC line established. (I muddled through.)

Since you already have one, things will go much smoother and easier with a port, instead of with large bore needles in both arms, hooked-up to the leukapheresis centrifuge machine. You will be able to move your arms, and read if you wish, and scratch your nose, and not have to squeeze a little rubber ball the entire time to keep the machine from detecting an insufficient blood exchange rate and automatically stopping and beeping at you.

Some smaller percentage of men might have a reaction to the anticoagulant used inside the machine to keep "the works" from clogging. It's called "citrate toxicity". Many men do not have any such side effects at all.

(I happened to experience some tingling around the mouth and lips, followed by some tingling in the lower face, followed by a feeling that the couch underneath me was vibrating when it wasn't, followed by a feeling of "buzzing" all over. The citrate anticoagulant can sometimes cause a chelation of calcium when it is returned to the body, and if the body cannot keep up with the short term adjustment, some of these symptoms can occur. Much more rarely, it can lead to cramping muscles in the lower legs or arms. If you feel "anything" unusual, report it to the technician, just in case. They are there to keep you comfortable.)

The leukapheresis will last at least 3 hours, and you might want to have some of your own music with you with earphones. Some places have some old movies you might watch. The technicians monitor you closely for any symptoms, provide a warm blanket, and feed you Tums or some other calcium type tablet if you might report some side effects. Afterwards, you might be tired, so it might be a good idea to bring a driver/support person with you, at least the first time. All in all, you might be more bored than anything else, especially the 2nd and 3rd times.

Several days later, the little bag of your treated cells comes back as your "Provenge" treatment. It is very important that you make this appointment on time, to use it while it is "fresh". Again, you will be monitored very closely for any reactions during the IV infusion process. Having someone there with you is good, too.

Some men feel some symptoms during the Provenge infusion; some don't feel too much at all.

(In my case, I felt little during the infusion, but within 24-36 hours after the first infusion I felt Really Tired and Weak. It was like having the flu, but without the sneezing, fever, or cough. I was pretty convinced that it was stimulating an immune reaction, and possibly interacting with my confirmed pretty large burden of metastatic disease.)

And before you know it, 1,2,3 and you can be done.

(Just one guy's thoughts on the matter.)

Charles

[sidnw in reply to ctarleton]

Charles ...Thanks very much for the info.I am sure your comments will be very beneficial as I go thru this. i knew very little before and you have put your comments down as things really went. Now, may I ask you if itreally helped.

also, my wife is writing all of this as I dictate to her. In order to get this thru they said I needed to put a photo of me..which she has never done and is so sorry that somehow it came out this large...

SidNW

[ctarleton in reply to sidnw]

My PSA did not make a big immediate response as a result of treatment.

The FDA approval was based on two Clinical Trials that showed Overall Median Survivals "at the other end" were somewhat better with Provenge.

Study 1 PROVENGE (N=341) Control (N=171)

Overall Median Survival 25.8 months (95% confidence interval 22.8-27.7) vs. 21.7 months (95% confidence interval 17.7-23.8).

Study 2 PROVENGE (N=82)

Control (N=45)

Overall Median Survival 25.9 months (20.0-32.4) vs.

21.4 (12.3-25.8).

That was OK by me.

Charles

[sidnw in reply to ctarleton]

Thks. Charles. Very interesting information.

Sidnw

[Neal-Snyder in reply to ctarleton]

I was told that only 10% have a PSA response (not including me) but the findings that Charles reports were good enough for me, too. Especially if you've done well on other meds, you can hope for a lengthier extended survival time.

No worries about the large photo. You're a good-looking couple, & it looks like you might be enjoying Asian food. Context is nice.

[sidnw in reply to sidnw]

Hi, I am Sid's wife, Shyrlene and Sid has just finished his 2nd Provenge treatment. Am a bit worried since his appetite is gone and hardly eats. when mentioning food he looks sick... very, very tired. Has any of you fellows felt like that after Provenge treatments. Onc. just prescribed a pill which is somethg. like meregold..a form of weed and is supposed to help his appetite. Familiar to anyone? Let me know please.

sidnw (wife)

[ctarleton in reply to sidnw]

As mentioned above, I was very tired and weak for a few days after my Provenge infusion(s). I took it easy, and made sure to be careful when I stood up and moved around. It faded away within several days to a week-ish.

That prescription for appetite stimulation might possibly be MARINOL® (dronabinol)? Very commonly prescribed for patients that need it. You can Google it to learn more.

I hope Sid starts feeling better soon. Some soothing comfort soups with some protein in them might be something he could eat and find soothing at this time of year.

It's tough to feel like crap. It's tough to be a caregiver for someone who feels like crap. Hopefully, Sid and you will get through the final Provenge a bit smoother, and head for better days ahead.

Good Luck, and keep us posted.

Charles

[Neal-Snyder in reply to ctarleton]

I found the nurse on my first leukaphersis visit had only showed me a very small portion of the movies they had to choose from, so feel free to ask. They had the collection in file drawers where I went. If you have DVDs you haven't watched, that's another option.

For the infusions, you can bring something to read.

If you have someone who can drive you to & from the extractions, it's a real comfort to be driven home when you're feeling weak. My wife was able to go home or run errands in between. I did not feel fit for rush hour freeway driving after the extractions.

I haven't read the large batch of replies you got here, but if you want even more, just search for Provenge on this site. One thing you'll see is the side effects I experienced after the 2nd & 3rd infusions. Briefly, I slept from Thursday night to early Saturday afternoon after the 2nd, & I had a brief period of extreme weakness in the evening of the 2nd & needed my wife's help to get out of bed & back in (ours is a bit high) & cover the short distance to the bathroom.

[ewhite999]

Piece of cake. Nothing to worry about. I completed the three rounds a few months ago. My most memorable issues were boredom, feeling cold and needing to urinate. Listening to 60 minutes episodes on my iPhone helped the boredom. Dressing warmer for rounds two and three helped me stay warm. They also had warm blankets. Not drinking a crazy amount of water helped with the need to urinate for rounds two and three. I drank way too much water the morning of the first treatment. The nurse told me I should drink a lot the day before, not the morning of. I was able to pee into a bottle during the first treatment. Annoying but doable. It took about three hours to take the blood on Friday and an hour and a half to put it back three days later on Monday. Good luck!

[sidnw in reply to ewhite999]

Thanks for the terrific explanation re: Provenge treatments. I certainly will wear a very warm sweater! I am feeling better about these marvelous explanations. My wife said ...hopefully I will stop sitting around just thinking and perhaps start eating also.

Thanks again!

SidNW

[wrando]

It's not too bad...bring a laptop with a couple of good videos. The technician will take care of you with a blanket, Tums or inject you with something if the tingling gets too annoying.

[sidnw]

Thks. These replies have really calmed me down Maybe I can sleep tonight.

SidNW

[Dan59]

Good Luck Sid, I wish you the best

Dan

[sidnw in reply to Dan59]

Thanks Dan...Tomorrow Morn, Friday, my daughter is taking me to have it done and Monday to have blood put back. Hope I can get back in good condition.

Sidnw

[blindsided]

Hello!

I just finished my 3rd infusion 3 days ago. I found the entire process quite interesting, with no noticeable side effects. I did not have a port, so the most challenging part of the process was locating a good vein for the leukapheresis - they had one nurse at the blood center who was an expert at this - I called her 'the vampire' - LOL! So, having a port, that should not be an issue for you. During the procedure I was asked if I wanted to watch TV or talk...I opted for talk and the time flew by!

The only slight side effect I have noticed is that I experience extremely intense and vivid dreams for a few nights after the infusion - quite enjoyable actually!

[sidnw in reply to blindsided]

thanks for the info. you guys are terrific...my attitude toward this Provenge is getting better.

Sidnw

[DenDoc]

Sid, Charles has given a very succinct and realistic summary. I just finished infusion #2 on Friday. My course has not been so benign. I do not have a port so I am strapped down for the leukophoresis. I got the numbness/tingling throughout my body both times and I think Tums only helped minimally. Because of the problems using a urinal I have been frugal with liquids and have not felt like eating during the procedure which is really more like 3 1/2 hours. Consequently on the second one I had a huge hypoglycemic reaction and felt awful even after apple juice corrected it.

You definitely need a driver. I was wiped out both nights after the procedure.

My first infusion went perfectly and I had no symptoms afterward. The one this week got really exciting when I had a transfusion reaction. First chills, then unrelenting shaking called rigors. It did respond to IV Benadryl so they were able to slowly finish my infusion all the time watching the clock to get the cells infused in the 2 hour window which is necessary. Again I was wiped out by the muscle spasms and probably by the benadryl. My wife has been a great assistant and driver.

Not sure where most men go for the infusions but I was fortunate to be in a Kaiser Oncology Infusion Center staffed by highly trained nurses and the docs are across the hall on the same floor. The medical system can respond very quickly if you stage a potentially life-threatening reaction!

Hoping for less excitement in two weeks with round 3. One of the frustrations with Provenge is how long it takes to know if it is doing anything. PSA is not a very good marker for me so we will get a PET scan in 4 months.

I have had the PCA for 20 years and the mets for 9+ so I am very grateful that these new treatments have been developed. Remember to support the research by helping raise money for organizations that support us. We will not be able to count on the Federal Government to support research in the future so charitable funds are important. I just raised $3000 for the Movember movement.

Bob

[sidnw in reply to DenDoc]

Wow..am really sorry to hear what happened to you after the second treatment. Hope you are feeling more like you were before this. Good Luck. One would think that before third treatment you would get the Benadryl first.

Sidnw

[Olivia007]

My 79 year old dad had it done Jan 2017 of this year he did great!!! He didn’t have any symptoms other than being tired but that has always been an issue. Ten months later he still is taking Lupron and Xgeva. Because it doesn’t keep the Psa down we just hope it keeps the cancer at bay from spreading more. It seems scary but it’s not. You just sit there for 3 hours and wait for the Provange to do its magic. Best of luck and u will do great!!! U got this. Olivia

[sidnw in reply to Olivia007]

Thanks Olivia for the info..Seems like there are many good feelings re treatment ..only one bad treatment .....glad it turned out well for dad.

Sidnw

[j-o-h-n]

Suggestion: Rent a pole dancer for the three hours...

Good Luck and Good Health.

j-o-h-n Sunday 12/03/2017 4:41 PM EST

[sidnw in reply to j-o-h-n]

Ha Ha. sounds like fun

Sidnw

[Albionmoonlight]

You’ve already had some terrific replies, but I️ just want to add that I️ had no side effects from Provenge treatment in Spring 2016. I️ did have to “muddle thru” in that they had great difficulty finding usable veins. The so-called “expert” felt terrible when she failed, even tho I️ tried to console her. Eventually, they succeeded each time which was a relief. Since you have a port, you don’t have to worry about that. Also, you will be able to move both arms which would have been much nicer. The only real problem I️ had was at the last collection. I️ drank tons of water in the hope that it would make it easier to find a vein. It didn’t, but it did make me have to pee really, really bad. I️ finally decided I️ couldn’t hold it and completely filled up the one quart urinal. The nurse was speechless. Oh, and I️ fell asleep during one of the infusions when they gave me Benedryl.

[sidnw in reply to Albionmoonlight]

I like the sleep part. was benedryl necessary?

Sidnw

[RonPavluvcik]

Hi Sid: I agree that you have gotten some terrific info already.

I finished my third PROVENGE infusion in late October 2017. Had to have a port installed because of poor veins. That made the leukopheresis procedure easier. Also made it easier to pee into a bottle once. Only issues: had EXTREME chills during second infusion. Pills cleared it up in 10 minutes, and they resumed the infusion and finished on time. Minimal fatigue during the 5-week process. Kept playing golf each week. I'm 70 years old, a bit obese, and in past 2 months they discovered growing mets in lymph nodes and bones. Being tested now for a clinical trial. if no match to requirements, will be starting chemo shortly. Have already had the pills in succession, which worked for a while then stopped working: CASODEX, XTANDI, ZYTIGA, KETOCONAZOLE (old school drug sometimes worked). Am still on LUPRON after 5 years - one strange side effect: an uncontrollable urge to collect pretty scarfs.....

So don't worry about the PROVENGE treatment - we have alerted you to about all that might happen, with solutions.

Good luck from Ron in leafy and snobby Connecticut

[sidnw in reply to RonPavluvcik]

Thks. "Snobby Connecticut". You sound quite satisfied with the treatment. And, good to hear so many of you feel good afterwards. Good luck to you and all of the other guys!

Sidnw

[Albionmoonlight]

They gave me a benedryl during each infusion. I don’t exactly remember why. I think it was supposed to help prevent some kind of possible adverse reaction. As Ron mentioned, you may get chilled during the infusion because the blood has been refrigerated. They give you lots of blankets. I never had chills but did sense a little cooling. Really, compared to biopsy, radiation, chemo, MRIs, etc, I thought Provenge was one of the easiest treatments/procedures that I’ve had. Best of luck to you.

Jim

[sidnw in reply to Albionmoonlight]

Well my friends..This is treatment No.1 Blood put back today! Had Benedryl and just got home...very tired..They suggested a Ex.Strength Tylonol before retiring tonight and said tomorrow being second day could be a little worse response..sure hope not. Will be taking the second part next week. All of you really helped my attitude re: PROVENGE...THANKS!!!!!

sIDNW