Preparing for Provenge

[Bigpike]

Anticipate starting Provenge in about two weeks. diagnosed three years ago PSA 147, extensive bone mets. Current treatment Leuprolide, radiation. Shortly after diagnosis three spots on legs and shoulder were zapped, and scheduled next week for radiation on new spots in my spine and wag. PSA was under .1 until three months ago has now inched up to .79. Planning to add Provenge in several weeks after the radiation is concluded Any advice on steps I should take to mitigate the effects?

[Tall_Allen]

What effects are you trying to mitigate? It is a boring process.

[Bigpike in reply to Tall_Allen]

Nausea, fatigue, Back/ joint pain, headache.

[Tall_Allen in reply to Bigpike]

They will give you benadryl or claritin

[V10fanatic in reply to Tall_Allen]

And Tylenol

[Hidden]

When I went through it I didn't have any side effects. The worst part was having to sit for hours while they collected the cells. It's a breeze, boring as hell but a breeze.

[Danielgreer]

Hi Bigpike, I’m scheduled for my second collection/infusion on Friday/Monday. I think it would be a good idea to at least take some Tylenol before the collection. It doesn’t hurt that bad but it hurts for a long time, 3 to 4 hours. I’m planning to take some Vicodin for the collection tomorrow and the nurse said that lots of people take it for the collection. About a week after my first infusion I got extreme back pain in the middle of my back for about 4 days. Then a few day’s later I got even more extreme lower back/left hip pain that also lasted 4 days and I definitely needed Vicodin for that one. My MO thinks that there’s a strong possibility that the pain is coming from my immune cells attacking the cancer. Also, I had to repeat the second collection because they didn’t get enough viable cells so make sure your plenty hydrated. I think people experience different side effects since I’ve read that this is supposed to be easy but the back pain is really bad for me. Good luck!

[leo2634]

No problem its a long boring process but side effects are minimal. I got the chills and fell asleep as soon as I got home. The treatment is easy but long at least it feels that way. My best advice is to empty your bladder right before they start because you can't move once they do. Leo

[Blueslover]

My recommendation would be to opt for having a central venous catheter placed. It makes both collections and infusions a whole lot easier. Just had a few chills with 2 of the infusions. Pretty easy really.

[SeosamhM]

Seriously: Number one (no pun intended) on your list is to practice urinating into a diaper while sitting on a recliner. Preferably in the presence of someone else. The combination of positioning, environment, and not knowing exactly how much I could depend on the Depends (in terms of volume) was unnerving. It was the emotional and physical equivalent of not pooping at summer camp compressed into several hours.

Second, the necessary use of anitcoagulants in apheresis leads to hypocalcemia, and supplemental calcium is a must (they will make you chew "Tums" or something similar during the process). There are many calcium-mediated signalling pathways, and the drop in ionized calcium initiated by the anticoagulant is the source of many of the sensations, e.g., tingling and coldness.

If you have some type of heart arrhythmia, as I do, then you need to be aware. In rare occurrences, the periodic calcium ingestion may not be enough and the apheresis team may need to give you a calcium drip. Tell the team if the tingling becomes something more - if you have some kind of arrhythmia, you'll know.

I was one of those rare occurrences - I had a few scary minutes during the first apheresis process, and my heart became very unhappy until they established the Ca drip.

Other than that, I agree = boring.

[V10fanatic in reply to SeosamhM]

I too had a serious reaction to the loss of Calcium. They put me on a drip for all 3 Leukapheresis and the "body buzzing" was mostly mitigated.

[33947]

I also had a catheter placed into a major vein in my neck. It made the collection and reinfusion of the white blood cells a simple and pain free if tedious procedure. Without the catheter you are stuck with a large needle every time they draw or return the cells. The needle is similar to the ones they use for blood donations. I'm on blood thinners so the repeated sticks with the needle could present some issues. Side effects were virtually nonexistent.

[j-o-h-n]

As per SeosamhM above..... I would recommend doubling up on your depends..... Bring a book to read?....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/07/2020 2:22 PM DST

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

And someone to turn the page if you don't have a central line! - Joe M. On a side note, my handle has been tortuous, maybe I need to change it but I'm lazy..... "Seosamh" - pronounced "show-sahv" is Joseph in Irish. A small tribute to my grandfather...

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

Ohhh a bit of the old sod..... If he came here through Ellis Island and has an unusual surname (not Murphy or Moloney etc.) I may be able to research his arrival (it's a free of charge hobby of mine).. Let me know - I get a kick out of finding people.... I just found and researched the artist "Salvatore Dali" who came here in 1934 with his wife.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/07/2020 3:24 PM DST

[Magnus1964]

I went through the whole treatment, no side effects. I hated that port sticking out of my chest.

[Shepard]

I had no serious side effects during the collection as long as I was taking the supplemental calcium. Ate so many tums I was sure I would get kidney stones - DIDN'T. Wear a heavy pad - I passed lots of water. Collection tech is key to your comfort. They can prevent some of the side effects if they do not collect too fast. Infusion was a breeze. I think it was helpful to reduce pain from bone mets, but the benefit was for only about ten months. It was beneficial for me at that time (three years ago), but doubt that I would do it again. I failed earlier this year with Taxotere (12 infusions) and am now preparing for fourth infusion of Jevtana. Right now living is a challenge. I hope for better days for all of us.