Provenge

[hysir]

Finished first round of Provenge. I was given benadril before starting infusion. After infusion I got chills, nausea,fatigue, and dizziness. My blood pressure dropped to 90/50 and it took about 5 hours to get back to normal. I was given demerol for the chills and tremors. I was also given medication for nausea. I went home and had light soup and liquids. Next morning, I felt great.

[YostConner]

Great last sentence. Continued success!

[Neal-Snyder]

I'm glad that you sound willing to continue. I had different reactions to each Provenge tx earlier this year. I don't remember side effects after the first. After the 2nd, I was wiped out. I had no hunger, which NEVER happens. I slept for about 44 hours, & woke up rested & very hungry. After the 3rd, I ate dinner & took a nap. I woke up needing to pee, but I didn't have the energy to get out of bed & get to the bathroom. I tried, but I just slid down to the floor. My wife had to get a neighbor to pick me up (embarrassing!), & then my wife helped me get back to bed. I told her I was starving. She brought me a plate of food & told me to sit up. I could only raise my head a little, so I had to eat with the plate on my chest. Then I slept, & had all my strength back the next time I woke up to pee. That was it. Dramatic, but brief.

I'm sorry you had a rough reaction, but like Yost, I loved your last sentence. I encourage you fight through any side effects & complete the treatments.

[hysir in reply to Neal-Snyder]

I am most assuredly going to finish the infusions. My doctor would not allow me to leave until I was back to normal. They kept waking me up to check blood pressure every 15 minutes. Very satisfied with their level of service.

[Neal-Snyder in reply to hysir]

Good for you. That's an amazing level of medical service! I never saw the doctor, except for an interview to admit me to the Provenge program. The nurse checked my BP at the end of each session, & I left.

[hysir in reply to Neal-Snyder]

The doctor is my medical oncologist and the infusions was at his practice.

[Neal-Snyder in reply to hysir]

I'm a member of Kaiser Permanente. My MO is in Oakland, CA. The only Kaiser oncologist handling Provenge in Northern CA is at Kaiser Santa Clara. So I had to go there to see her & for the infusions. It wasn't hard to get there & get back in a day, but I feel sorry for guys who live too far from Santa Clara to do that. I was very glad to be at home, especially when I had side effects.

[DenDoc in reply to Neal-Snyder]

I am a Kaiser Permanente patient in Denver. I just finished my first Provenge infusion and at 48 hours I do not have side effects. I really appreciate being in an infusion center in a huge medical facility with many available if needed. They put me in the chair right next to the nursing station and two nurses were assigned to me for the entire time. I got lots of attention for good reason when I read about the reactions above.

Much to be Thankful for this year, especially good medical care and a comprehensive coordinated system of health care.

[Neal-Snyder]

I posted a reply but I don't see it. I was in an infusion center with an assigned nurse checking on me, & I had a call button. In my case, I didn't have any SEs until evening. (I have no idea if anyone has problematic SEs on the way home, but my guess would be that if you're fine after the infusion, & you're not going to be traveling for TOO long, you'll be OK.) I'm glad they didn't keep me there for extensive observation, since home is always more comfortable, but I'm also glad I had my wife handy to help me after the 3rd infusion. I guess I'd advise guys not to be home alone that evening.

[WinnipesaukeeBob]

I finished Provence with only minor SE, but I did make a point of keeping my magnesium, potassium, and calcium levels high. Perhaps supplements for these minerals would help you.

I take Twin Labs Cell-mins (magnesium and potassium) and New Chapter Bone Strength (calcium, D3, K), plus another 5000iu of D3 to do this.

Provence is a good treatment. Dr. Myers had me follow it with Leukine shots to get maximum benefit.

Glad you are feeling better.

[hysir in reply to WinnipesaukeeBob]

I will look into it, thanks.

[RonPavluvcik]

Have had several problems with the PROVENGE treatment, and my comments may help others.....

First, as is noted on the PROVENGE website, a new patient is supposed to get a "vein assessment" to confirm his veins are prominent enough to be stuck with big needles. (Apparently only a small percentage of patients have bad veins). My doc did not tell me about this. So I drove an hour to the blood withdrawal site in April 2017 with a friend and got strapped in for treatment, but the RN could not get my blood to flow out fast enough using needles. After 30 minutes of fiddling around she gave up and cancelled the session, saying I needed to get a catheter installed in my chest to tap into an artery near the heart, and the foot-long thin hose would travel under my skin and pop out with 2 connectors to be used for the blood withdrawal process which is called "leukopheresis". So I needed 3 more weeks to get that approved and done. Then back to the blood center an hour away for my first successful withdrawal. No side effects, Drove home myself. Three days later, after my white blood cells were mixed with PROVENGE at the Dendreon lab in Georgia, and shipped back to my local Onc for infusion, I was notified my blood was contaminated - quick blood tests indeed confirmed I had a dangerous blood infection. I was hospitalized for 3 nights to kill the infection and to have the contaminated catheter removed. I was stressed out and depressed from the delayed treatment.

I waited a couple of months to calm down, then I started over again. Got another catheter installed (at a different hospital from the one that caused a blood infection) and had a smooth complete PROVENGE treatment. Tried again 2 weeks later, but had severe chills at the infusion, and I could barely talk I was shaking so much. Otherwise OK. Had the third and final treatment after another 2 weeks with no side effects. (This time they had me pumped up with meds in anticipation of more chills.)

So now I'm done with PROVENGE as of late October 2017. Onc says it's hard to determine if/when the PROVENGE is doing any good. Average person lives another 2-3 years. Meanwhile my bone mets have increased into hip, spine, feet, ribs, so I just had my first XGEVA injection to fight bone mets and future pain. Onc says I should probably start chemo soon.

I continue to work part time as a driving instructor, I played golf in leafy but chilly Connecticut last Friday, I "donated" money to an Indian casino last week, and I try to keep my spirits up with my small lap dog and favorite mostly junk foods. It is what it is. I am 70 years old and live by myself with many friends and family who stop by or email or call, and I still do some volunteer work. So overall I can't complain. Many have it worse than me. I am spiritually, emotionally, financially, and legally ready to kick the bucket in 1-3 years.

Good luck to others.....don't give up......every case is different....hang in there...

Ron Pavluvcik

CT - 203-767-1123

[Neal-Snyder in reply to RonPavluvcik]

Ron, I'm sorry you had to go through so much, & proud of you for sticking with it. First, some advice for other guys, & then some comments to you.

Guys, you SHOULD be advised to drink a a lot of water the day before each leukapherasis, so you'll have nice fat veins for the nurse to use. FOLLOW THIS ADVICE. Otherwise, the nurse may have some trouble getting started. Once she does, a bell may ring every time the flow isn't good enough, & she'll have to adjust the connection to your donor arm. Every time the bell goes off, you have to add a minute to the time you'll be trapped in the chair/bed, with both arms hooked up, one to give blood & the other to receive it back with white blood cells removed. You're not supposed to move your arms. (They'll probably tell you to keep drinking water on the day of the extraction, before you go in. I had to reduce the amount or I'd need to pee during the process.) They'll have a urinal they can put under you if the need arises, but having to lower your pants & have them slide it under you is uncomfortable, & you may be too uncomfortable to pee. You should drink water in advance of the infusions, too, but they're much more pleasant. They only need 1 arm, you can move it, & you're free to get out of the chair & pull the pole on wheels to a bathroom, which should be very close by in the same room.

Ron, would you like to live longer than you expect? The more you have fun, the more you produce pleasure hormones that stimulate your immune system. The more you avoid stresses, the less you have stress hormones doing the opposite. Are there places you'd enjoy traveling to, & can afford to? If you have any interest in photography, there are cameras, like the Canon Digital Rebel, or even some cheaper ones, that will take great photos on the automatic settings, Of course if you don't mind having to choose settings before you shoot, that's fine. In either case, it's really easy to improve your shots with the software your computer already has, or that you can get. Take lots of photos without the old worry about needing film. Choose the best, photo-edit them to be still better, & share them online with family & friends.I have a lot of fun taking photos in places I travel to, & at family parties, etc. Or do you love music but don't go to concerts or festivals or nightclubs? Try it. These are just examples from my life. You know much better than I what might be fun for you. Of course you'll be better off if you can entertain yourself without junk food, but if that's what you need to cheer you up, so be it.

I wonder if an electric blanket & other blankets would have warmed you up. That's what they did for me during the extractions.

Do you know whether your doctor's estimate of 2-3 extra years is based on research or on his or her experience?

Neal

[RonPavluvcik in reply to Neal-Snyder]

Hi Neal,

Thanks for the feedback and pep talk. I will respond point by point in a way that might help others who may be considering the PROVENGE treatment:

1 - You were absolutely correct to suggest drinking much water to improve your veins for the needles....for me, it still wasn't good enough, so I needed to have the catheter installed. During one blood withdrawal session, while on the catheter, I had to pee, and the nurse was able to stand me up and shoot into a plastic container. Not a big problem.

2 - The nurses gave me blankets to use for the 3 blood withdrawals and 3 infusions, and they helped, except that sever chills episode during the second infusion really scared me until the meds settled me down withing about 20 minutes. Then they restarted the infusion drip.

3 - I try to be positive about things, sometimes with humor to keep my sanity. And you're right that a positive attitude is helpful. Plus hobbies.

4 - The 1-3 years of living I referred to is my prognosis, NOT the efficacy of the PROVENGE which is much less. I was told that the median (average) life expectancy for people who do PROVENGE is about 2-3 years....my mets to lymph nodes and bones will probably do me in sooner. PROVENGE itself is pitched as a treatment that might EXTEND someone's life 4 months or more. Everyone is different.

Good luck to all

Ron in CT

[Neal-Snyder in reply to RonPavluvcik]

Hi Ron,

Wish my nurse had offered to stand me up!

I'm glad you have a sense of humor & are putting it to good use. It really kicks up the endorphins, & adds a lot to enjoyment of life.

I'm familiar with the estimate for Provenge. That's why I was hoping you knew about a new one. I was admitted to an early stage Provenge trial over a decade ago, & then removed before my first infusion because of a mistake the hospital made.

You may be right that your survival time is as limited as you've been told. In my experience, those estimates are extremely pessimistic. Multiple oncologists gave me short estimates after my RP & EBRP failed quickly, & my doubling times were short. From what I read, those were the 2 most important factors. My urologist gave me 6 to 13 years from diagnosis, based on research on how long guys in general lasted, not guys with my history. But I've outlived the 13 years & I'm not done yet. May you prove your doctor wrong.

Neal

[Shepard]

I have posted experience some where else, but will add a brief here. I drank lots of water before and increased calcium intake. First collection was traumatic with nausea and near faint. Was able to give the minimum through eating half a bottle of tums, ice pack under neck and blankets. Fifteen minutes after collection I was fine and drove the two hours home. Considered the second collection with dread. Went better as I put on an external catheter so no more worry about wetting myself. Different tech did not push the collection at high speed and carefully made adjustments according to my response. I continued to eat the tums and cookies now and then with some juice. Process was not fun, but by comparison a breeze. Third collection not as good (different tech), but tolerable. Seems to me a key is the med tech paying attention and making adjustments to your response. All three infusions were easy with no bad side effects. Now six weeks later, my PSA went from 4.3 to 15.6. Doctor said the measure included dead cells and he was pleased with the process. I am not knowledgeable that PSA also measure dead cells. In any case, add-ons to my Lupron and Cassodex await the results of a CT scan to be done three months from now to determine if the provenge reduced the mets in lymph nodes. At this time, I feel I did right with the provenge. I knew it would not be fun (what is?) and that it was not a cure. My advice is do it and try to minimize the negative effects by following prep instructions. Also, give the med tech feedback as you feel bad side effects coming on and encourage them to reduce the pressure and speed of the collection. You can do it!