Provenge

[Crabcrushe]

Had the port installed yesterday; consumed 3 hours, but other than that it was a non-event ...

[Magnus1964]

Good luck, there is light at the end of the tunnel. I was so happy to get that port out. Better yet Provenge worked.

[Hidden in reply to Magnus1964]

Glad to hear it.. keep trucking Magnus..

[Hidden]

I pray this works well for you . I’m interested of course , because I’ve yet to do it. Good for you , good for us all . Best of luck . Keep chugging that brew.. 🦀

[NPfisherman]

Sound good....glad it went ok.....Molon labe.... keep fighting, Spartan... checked out some molon labe tattoos after your post yesterday......may go get one...LOL...

Fish

[monte1111]

Already been told Provenge was my next stop after xtandi fails. So 3 hours just to put the port in? That doesn't include outfusion? (made that word up). Magnus1964 gives Provenge a thumbs up -- and he has been doing this 27 years. Guess it does ok for some, and a whole lot for others. I'll be keeping an eye on you Crabcrusher.

[Crabcrushe in reply to monte1111]

Well, it only took 25 minutes to install, but they couldn't get it to get to stop bleeding for a while, and I lay on a turkey for a couple of hours before they cut me. Mine was more than likely worst case, Monte.

[Crabcrushe in reply to Crabcrushe]

Lol this flippin' tablet picked out "turkey" for gurney.

[ctarleton]

Good Luck, Crabcrushe. With the port, your blood cells collection leukapheresis sessions will likely go more comfortably than being constrained by the large gauge needles in each arm for hours at at time, hooked-up to the machine. Be sure to keep everything clean, and insist the techs do the routine flushing, etc. Let us know how your first leukapheresis session goes, and how the first Provenge infusion goes, too. You'll probably want to take somebody with you for company, and to drive home.

Charles

[Crabcrushe in reply to ctarleton]

I appreciate that. I'd have thought I'd have gotten a more thorough briefing re: maintenance/hygiene et al. Any further advice would be helpful. (They did say to lift no more than ten pounds)...

[Crabcrushe in reply to ctarleton]

Charles, I hadn't planned on a driver. I was fine driving to and fro during the Tax refills; is it disorienting or anything to the point of further caution?

[ctarleton in reply to Crabcrushe]

Most often, no.

I had leukapheresis for Provenge at a fairly busy Red Cross facility in Oakland, CA back in 2016. Over the sessions I saw men with and without ports who were doing it for their Provenge. Most seemed to be perfectly fine during the procedure and afterward. All the blood centers usually have an area where one can sit as long as one wants, and perhaps have some cookies, snacks, or juice and rest until they feel completely stable afterwards.

My own anecdotal experience was a bit different. Some of my veins were a bit "reluctant", and the machine would beep/stop, and they'd have to reset a bit. I also had some symptoms of what is called citrate toxicity, due to the real-time chelation of calcium in my recirculating blood due to the anticoagulant agent used inside the machine to keep it working right. During the 1st hour I, personally, began to develop some tingling around the lips and face. During the 2nd hour, I felt like the couch beneath me was vibrating a bit (which it was not). During the 3rd hour, I felt like I was "buzzing" all over. None of it "hurt", but I was sure to tell the attendent, who kept records on my status every 15 minutes, and who had me eating lots of Tums. Most other men there weren't eating any Tums, or experiencing any or much of such symptoms, and their bodies were making real-time adjustments. (Anecdotally, I once met an older man at a patient conference in Los Angeles in a side meeting for Provenge who had had his symptoms progress to the point of some actual leg cramping during the procedure. But, I think that's pretty rare.)

Late during one of my leukapheresis procedures I also had a large hot flash and a simultaneous Vasovagal syncope reaction, where I turned white as a sheet and reported that I felt a little dizzy. Perhaps a combination of veins trauma, other symptoms, etc. The expert techs immediately sprung into action to lower my head, elevate my feet, apply cold cloths to my neck, etc. ... I did not actually pass out (which would have ended the procedure) and the symptoms passed within minutes. Again, nobody else I saw doing the leukapheresis procedures had this happen. Most just calmly did some reading, listened to their tunes, etc.

Personally, I felt pretty tired by the end of each leukapheresis, and we had a long drive home, and I was happy to have someone else with me each time. Never any disorientation.

As for the actual Provenge infusions, mine went pretty well. No immediate reactions at the infusion center. After I went home I did begin to feel tired and weak for several days afterward, as it felt like my immune system was reacting. It was like the flu, but without any coughing, sneezing, liquids, fevers, or chills. It tapered off within a week or so each time. My rising PSA was around 70-80 at the time after being on Lupron for almost 3 years, and I added Xtandi fairly soon afterwards, which brought my PSA back down from 95.0 to 1.2.

I think my side effects experience during leukapheresis was the exception rather then the rule. In similar circumstances, I'd do it again.

Charles

[judg69]

Hi Crabcrusher, assuming your port is for infusion of cancer drugs, there is little maintainance you need to do once it is fully healed. Protocol for infusion is 1) for nurse to ensure it is properly open and accessing your circulatory system, 2) hook the IV line in to your port, and 3) when that day’s infusion is complete to remove the IV line and clean/flush out your port. I had over 2 years infusion for lung cancer ( now battling 4+3 G prostate cancer ). By the way , I liked the part where you laid on a turkey for 2 hours before they cut you! All the Best, judg69

[Crabcrushe]

(eleven, bunch, RC) lol still pickin' on a Fire

[Crabcrushe]

Maybe this is right place

...Spent 3 hours at ARC in Tulsa yesterday; no discomfort there was a blood warmer installed

[Crabcrushe]

About a half hour with diphenhydramine HC today, and an hour of trained blood infusion and I' m home. Napped most of the time.

Piece of cake.

[Crabcrushe in reply to Crabcrushe]

First morning after provenge finds me with a hard-to-describe, almost imperceptible tingle in skin and joints and a "lightness" of being. I'm prompted to keep my core tensed and shoulder\ knees loose after voiding bowels and bladder. Don't detect any other changes, and the ones I mentioned are so slight as to barely be discerned as real as opposed to imaginary.

As I laboriously type, one-handed, I feel an increasing urge to get it on. Don't know about any changes in pain, because they'd be masked by my ingestion of methadone/tramadol.

In a nutshell, I feel good.

Charlie

[Crabcrushe]

Round two, same-same.

Piece of cake.

Crabcrusher

[Crabcrushe]

Third hour with no pain other than lower backache from poor posture during the six hours in my GMC yesterday. Can't definitively ascribe the lack to Provenge, because there's no science involved in the report, but it is definitely coincidental (as well as the first time I haven't been nagged by my body since before the stroke in '15.

Lovin' it.

Crabcrusher

[Crabcrushe]

Day after 2d leukepheresis with no pain other a slight backache from strain a few days ago, and I just ate supper and am about to hit the sack. Did not have to take pain meds this PM.

Strange...

Crabcrusher

[Crabcrushe]

Infusion yesterday; had to shake off the Benadryl to get stuff done in perfect spring weather, but no negatives. One to go.

Need less sleep, able to cut methadone & tramadol by 25% with 0 increase in that "bone ache". Paused the Xtandi. Have twice the energy, with less of a halting, hunched, old man gait upon getting up from a chair or bed. Doing deeper squats with less pushback from my knees. About HALF my "get up and go...is...BACK.

Provenge? BIRM? C? Won't know for a while, but it's cool, regardless.

Respiration is much better, which was a pleasantly surprising benefit. Resting breathing mechanism has reverted to what it was in the Military.

BP down roughly 3 points in the diastolic.

I'm pissed at myself for not taking a standard scientific approach IOT seperate Provenge benefits from those from the supps, but frankly this "feel good" result was unexpected halfway through treatment, and I refuse to pause the BIRM, C, Ashwaganda et al to more accurately document the treatment 's effectiveness. I apologize for that.

Nous Defions

Crabcrusher

[Hidden]

Glad you are feeling so well. It is remarkable to feel improvement and more overall energy.

[Crabcrushe]

Feel great. Provenge is histort, back on xtandi/lupor on for a week.