Entering a New Stage Moving to Provenge

[MJCA]

Hi Gents and Caregivers,

I have had this motherf*cker of a disease for over 17 years. A few months back I had my first PSMA PET scan. And I have entered a new stage, Stage IV, that is. The scan showed progression to many different areas on my skeleton. For over four years, I had been on what I called my "holy trinity", Erleada, Lupron and Xgeva. All of a sudden, I started experiencing a lot of dizziness. My PCP thought it was dehydration; so I hydrated more. Still dizzy. I looked up the side effect of Erleada and lo and behold dizziness was a side effect. After being off Erleada for about six weeks, my dizziness has ceased.

I saw my MO last week, he wants to put me on Provenge. My question to the group:

What can I expect with Provenge? Especially what side effects others have encountered.

Also, I do have 89 tabs of Erleada left. If anyone can use them, please send me a message.

[NotAlwaysSunshine]

Zero side effects with Provenge. The hardest part was keeping still for hours during the treatment.

[garyg0616 in reply to NotAlwaysSunshine]

I moved my erleada dose to after dinner and before bedtime. The dizziness was substantially reduced.

[MJCA in reply to garyg0616]

Thanks. Are you taking all 4 pills at once?

[garyg0616 in reply to MJCA]

Yes going on 5 years.

[MJCA in reply to garyg0616]

I was told to take 4 pills separately not together.

[GeorgeGlass in reply to NotAlwaysSunshine]

did you use a port for it?

[DMohr011]

Wow, 17 years. You are a Rock Star Warrior!

[MJCA in reply to DMohr011]

Thanks. I wish I had the energy of a rockstar!

[Spyder54]

17 years is a long haul. I read your bio looking for clues. You mention no prostetechtomy, but not much else in the early years. Any thoughts? Thanks, Mike

[Schwah]

I had zero side affects the first two sessions and I got sick with flu like symptoms for two days on the third. That’s it. Get prepared to sit in a chair snd binge watch something for 4 hours and pee in a cup.

Schwah

[MJCA in reply to Schwah]

Thanks. I can hardly wait!!

[GeorgeGlass in reply to Schwah]

did you need to use a port?

[MMK-XFuture]

Hats off to you, brother. 17 years! I'm sure I'm not alone in wishing we could ride this thing for that long. Keep it up.

[MJCA in reply to MMK-XFuture]

Thank you. I wish I COULD keep it up!!😥

[leo2634]

Provenge is nothing compared ro most of the medication we're subject to. My best advice is to pee right before they hook you up to the blood machine you have to sit still for around three hours. I got no side effects from first infusion , chills second, full blown Flu like symptoms on third lasting for a day. I choose not to get a port but thats a choice you'll have to make. All in all Provenge is not bad to have done. Leo 2634

[MJCA in reply to leo2634]

Thanks!

[GeorgeGlass in reply to leo2634]

what would be the purpose of a port, for the provenge? Not using the port was easy for you, with the regular vein sticks?

[leo2634 in reply to GeorgeGlass]

Well they stick two needles in you three times for the first part then three times for the second part so you're stuck nine times. I didn't want the port so got stuck .

[NotAlwaysSunshine in reply to leo2634]

My husband is portless as well.

[EdBar]

I received Provenge treatment last summer/fall, flu like symptoms after 3rd infusion lasted a day or two. If I had to do it all over again I’d get a port, had to be stabbed multiple times despite good veins in my arms, it’s important that they get the flow right. Compared to other treatments I’ve had it was easy. I wore pads during the process in case I had to let out a little “pressure “. I learned after first collection to hydrate really well a couple days before treatment but go easy the morning of, you can’t use the bathroom for 3 hours during collection.

Ed

[GeorgeGlass in reply to EdBar]

What is a port, and how is it installed in your body for a provenge treatment?

[EdBar in reply to GeorgeGlass]

It’s a chest port that taps into a vein/artery, it requires a minor outpatient surgery for install and removal. And once it’s in it’s important to keep it clean and dry until your treatment is over.

[GeorgeGlass in reply to EdBar]

Does the port make the provenge treatment more effective due to better blood blow, compared to sticking the veins in your arm? Do you really think the port is a better option? Does the port increase the chances of infection by a lot? Are your veins hard to tap into or was it difficult due to difficult nature of the Provenge treatment/infusion process?

[EdBar in reply to GeorgeGlass]

It’s not gonna make treatment any more or less effective. My veins are usually pretty easy to stick but it’s important to maintain a certain flow and pressure while the white cells are being collected so it took a few jabs to get it right, and once your hooked up to the collection machine you cannot move your arms. You’ll have blood flowing out to the machine from one arm and blood flowing from the machine back into your other arm. As for whether the port increases the chance of infection that’s a discussion for you and your doctor to have.

Ed

[MJCA in reply to GeorgeGlass]

No. The port does nothing for the treatment. The port is only used for leukapharesis, the process where your blood is drawn, the white blood cells are separated and the red blood cells and plasma are put back in to the body via the second port. When Provenge is infused into the body, it is done slowly through an IV and not the port.

[MJCA in reply to EdBar]

Thanks. It’s already been in and it was removed > 2, weeks ago.

[GeorgeGlass in reply to MJCA]

What was removed, the Port? Was it worth using it, or a pain to keep clean and dry? How long did the entire process take from consent forms and blood draw to all infusions completed?

[MJCA in reply to GeorgeGlass]

Everybody views things differently. The advantage to the port was my arms were not tied down for 4 hours. I had full use of my arms and hands during leukapharesis. The downside, taking a shower involved covering the whole thing with tape and plastic so it would not get wet. They cut my neck to insert it. That hurt for about 1 week. I had the catheter implanted 3 November and removed 7 December. It was removed bedside in pre-op. A couple shots of lidocaine and I was good to go. Here’s a pic.

Picture of leukapharesis port.

[GeorgeGlass in reply to MJCA]

OK, thanks a lot. I'll ask the medical folks to assess my veins and give me a recommendation.

[Tonwantonga]

My insurance just authorized Provenge for me, so it is just around the corner, not sure how long we will watch my PSA rise before my MO gets it started. Unlike you, I am not quite at 2 yr since DX. odd that we are all on the same dam roller coaster ride but we all have our own separate tracks. Good luck to you, I hope you find another 17+ years!

[shipoo]

I had Provenge a couple of years back when I was 76. No side effects whatsoever. A bit boring when the treatment lasts a number of hours, but painless. Best of luck

[GeorgeGlass in reply to shipoo]

did you use a port or not? If not, was the vein sticking part pretty routine?

[shipoo in reply to GeorgeGlass]

I did not use a port, but received Pluvicto directly into a vein. Very routine .

[Catfish21]

I had Provenge plus Lupron in 2012. Lupron decreased PSA, but when I stopped Lupron, PSA quickly increased. Bone scan showed few mets. So, I do not know how Provenge might be effective.

[MJCA in reply to Catfish21]

Yep, I am wondering about that as well.

[MateoBeach]

get the Provenge if and when you can. It’s a plus for survival.

Not a substitute for the Erleada, but Nubequa May be since it does not cross into the brain. Abiraterone is also a good choice and is generic inexpensive.

[Gabby643]

My MO said reduce to 3 tablets from 4. Been on 3 tablets +Lupron and 3 month Xgeva for a year and a 3/4, PSA still undetectable. I had developed some serious Vertigo, now No Vertigo.

[MJCA in reply to Gabby643]

Prior to Zytiga I was on Erleada for 4.5 years. Initially there were a number of side effects. Then after 4 years I started getting very dizzy. MO took me off Erleada and the dizziness went away fairly quickly after that.