Starting Provenge in January

[33Ford]

I am scheduled to start Provenge treatment in January. Will post how it goes. Also starting Lynparza primarily based on BRCA1 mutation.

[NickJoy]

very best of luck

[tango65]

Those are two treatment shown to have a survival advantage.

Best of luck!!

[Hidden]

I’ve know a couple guys that it’s helped. It can help . Good luck ford!

[Tall_Allen]

Good luck! Please report back.

[Shooter1]

I finished Provenge in June. 5 mo. of dropping PSA, but this month started back up... Best of luck with your treatments... Consider a port, after first treatment I had mine put in... really made the rest of the in and outs easy and painless.

[33Ford in reply to Shooter1]

I'm going the port route.

[2dee]

I have BRCA2 and 3mos on Lynparza has worked wonders for ME.

2Dee

[Schwah]

Best advise I can give is water water water for the 3 days previous. Huge difference maker

[EdBar]

Definitely get the port for Provenge, yes you have to be careful regarding infection but the nurse said they are rare. I didn’t get a port and regretted it, I have good veins and had to get multiple sticks each time. With a port you have use of your hands during the pharesis and infusion, without one you do not.I didn’t have a reaction until after the 3rd infusion it felt like getting a Covid vax for a couple days after the 3rd, immune system kicked in I guess.

Ed

[Hidden]

Besides chemo it was the best move I have made. Didn't do a port, everything went smooth.

[HopingForTheBest1]

BRCA2. Provenge Feb 2018;. Also started on Olaparib around that time. Olaparib kept my PSA undetectable for almost 2 years before it ran its' course. Now on clinical trial.

Good luck.

[Catfish21]

I got Provenge treatment in 2012. It was useless for me. But Lupron worked for 7 years. Now I am on Lupron+Zytiga, but PSA starts to rise again.

P.S. My last oncologist told me that Provenge trial at his facility did not show good results. Maybe you will be more lucky. Best wishes.

[Hidden in reply to Catfish21]

How do you know that Provenge didn't help Lupron be effective for a longer period of time?

[Catfish21 in reply to Hidden]

Provenge did not decrease PSA for me, but following Lupron lowed PSA to undetectable level. Before I started Provenge, I analyzed results of many Provenge participants. As I remember, I started the group “Provenge treatment” on the site Prostate Cancer News where I collected people responses. Unfortunately, the majority were also negative.

[Hidden in reply to Catfish21]

Your collection of responses is flawed. Most people don't understand the principles of Provenge, including you. Finally why did you proceed with Provenge if your so called collected data showed a majority of collected responses negative?

[Catfish21 in reply to Hidden]

Because it was free for me. So why do not try this opportunity. Did you really get this treatment? What are results?

[Hidden in reply to Catfish21]

"Because it was free for me."You make zero sense. Why try a medical procedure with multiple negative results?Also this group for advanced prostate cancer, are you in the proper group?

[Catfish21 in reply to Hidden]

Now I have advanced PC with multiple metastasis. So I think I am at the right place. You did not answer me. Did you get Provenge treatment yourself? Yes or no?

[Hidden in reply to Catfish21]

You didn't ask me if I went through Provenge treatment until you edited your comment. Duh! Sorry I'm not going to argue with a broken record, goodbye.

[Catfish21]

OK. Ten years ago, I met one guy online who very encouraged Provenge treatment for forum members. Later we knew he did not have PC and just had commercial interest. As I understood, Nameless999 does not have personal experience with Provenge.

[j-o-h-n]

Hopefully there's a Ford in you Future............and in any color you want as long as it's black....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/14/2021 11:11 PM EST

[33Ford]

Had my CVC tubing installed the 4th. Went really smoothly. I am somewhat surprised it doesn't bother me much, almost forget it is there! Can sleep in about any position I want and little to no restrictions on my activities. I have my first bloodletting this next Monday (10th), so we will see how that goes.

CVC tubing

[33Ford]

Had my first Leukapheresis procedure today, it went well. Started at 8:45 and ended at 12:15. Only issue I noticed during the procedure was numbing around my lips which the Tums handled. It is 5:45 now and I am having some muscle and joint ache, but fairly mild. The return blood line was heated, that was nice! Cold here today and that felt good and seemed to take care of any chills. I had my shirt off and just a towel thrown over me, felt very comfortable. My wife and I eat lunch after the treatment, then I dropped by my MO office to have the dressing changed and then we went shopping. All in all, an enjoyable day.

Barring any airline issues I should have my IV infusion Thursday.

[33Ford]

Joint pain increased later in the evening, but nothing that I couldn't handle without any pain meds. This morning feeling fine.

[33Ford]

Had first infusion last Thursday, it went well. Big increase in muscle pain over the weekend. Had my second Leukapheresis procedure today. Uneventful. Muscle pain has decreased some. Next infusion is this coming Thursday.

[Beachcomber8]

Thank you very much for reporting back on your experience, it is much appreciated. Wishing you all the best!

[33Ford]

Big setback today! Something went wrong with my blood package. No idea what yet, but have to reschedule everything and try again. 🙃

[Beachcomber8 in reply to 33Ford]

Awfully sorry to hear this. Wishing you well going forward.

[33Ford in reply to Beachcomber8]

The issue with the blood sample drawn was too low of a T-Cell count to use. This, along with lab showing very low WBC, RBC & HGB, ended up with a bone marrow biopsy. That came back positive of PCa. Currently getting a blood transfusion to get the RBC count and HGB up.

[Beachcomber8 in reply to 33Ford]

Sorry to hear that. Hope the transfusion went well. Wishing you all the best.

[NotAlwaysSunshine]

Oh my goodness! Any explanation for the missing blood? Are you still taking tums? My husband is on lynparza and is complaining about his lips feeling numb. He completed Provenge in 2020 without a port.

[33Ford in reply to NotAlwaysSunshine]

Met with MO today, seems there was not a high enough T cell count to use it. He suspended any further procedures until they figure it out. He was also concerned about my low White Cell count, so he performed a bone biopsy. I'll get the results next Wednesday. Interesting day, but kinda treading water until we see the biopsy results.

[NotAlwaysSunshine in reply to 33Ford]

I hope you can get outside today for some sunshine. Do something that makes you feel good today!!

[33Ford in reply to NotAlwaysSunshine]

LOL, temp in the 20s and high winds!

[Fightinghard]

Finished 2nd provenge cycle. Had fever and nausea for 4 days after infusion

I am hoping the 3rd cycle is not as rough on me

[Beachcomber8 in reply to Fightinghard]

Thank you for sharing your experience. Wishing you all the best!

[Grumpyswife]

My guy did Provenge easily. They insisted on a port which he absolutely hated. We had to finish the treatment in Minnesota due to Hurricane Ida hitting Fort Myers. Minnesota MO could not believe they had done a port. MO there was involved in the original trial. We have no evidence that Provenge did anything for Grumpy other then that he is still alive. No way to measure results.

[33Ford]

Interesting take, I love the port, wouldn't have wanted it any other way.