I started May 21 with a diag of aggressive Stage 4 with vast mets, skull, clavicle, sternum, entire spine, sacrum pelvis and hips. Spots in lungs, liver, spleen and many large lymph areas upper and lower body. Inital PSA 1065, Lupron, Zytiga, Pred, Zometa.
PMSA January 2023 10 avid sights in ribs and spine, small focal area in prostate. PSA bottom .06 last year began progressing last Nov and last week was .39. MO referred me to Immune therapy Provenge then chemo. Chemo to be determined.
I have serious doubts about getting Provenge. I have read the articles posted here, the materials provided by my second MO as well as video's. Not at hearts peace with this. I am open to questions and opinions.
Thank you!!!
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katartizo61
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wrapping my head around this. cost paid for. been around for awhile, check, my MO said "you are healthy" whatever he meant from that. feels more like a trial. providing extended life expectancy would require knowing what the original end date is. QOL vs time always a consideration. 4 months seemingly is most often quoted.
Almost all trials have overall survival as the thing the medicine is trying to improve. Provenge passed the trial stage long ago - it improves survival. There are no serious adverse events associated with it. I don't understand the nature of your reservations about it.
Okay, some soap-boxing here. While I agree with the general consensus that you should pursue Provenge (I mean, let's throw the kitchen sink at this, yah?), I must temper the rampant enthusiasm with some basic caution. Like any medical procedure/drug, there can be very rare, very serious side effects (See: provenge.com/hcp/provenge-side-effects). Likely many of these are associated with comorbidities, but no one really knows.
For me, the rare-but-serious side-effect was not in the final Provenge treatment, but in the leukapheresis process - the harvesting of my immune cells for modification. The apheresis process literally takes blood from one arm, spins it to harvest cells (in this instance, leukocytes) and puts the blood back in the other arm. To facilitate this and discourage clotting, the process commonly uses a short-acting blood thinner called citrate.
My first apheresis session, it was obvious that I was going to have a horrible time with the citrate. While thinning blood, citrate also binds to free calcium in our bodies and leads to hypocalcemia of varying degrees. Calcium does some very important things, like controlling heart muscle contraction (foreshadowing).
The Tums they give to counteract incipient hypocalcemia did not work on me. I came close to cardiac arrest; only the quick action of intravenous calcium saved everyone -especially me - from a very bad day at the clinic. From then on (I believe there are 3 leukapheresis sessions), I had a calcium drip for every session.
This is a very long-winded way to say: Don't assume you can drive yourself. Obviously the first apheresis session was a near disaster for me. But even when I had a calcium drip on my subsequent visits, the process left me exhausted. And I was a pretty healthy (except for the cancer stuff, of course ) 50 years old at the time.
Apheresis sessions can vary - my sessions lasted between 4 and 6 hours. My advice? Get a ride to and from that first apheresis visit and see how you feel. And, if you have a comorbidity - like cardiac arrhythmia - discuss it with your doctor. Good luck. - Joe M.
I absolutely don't regret Provenge, TD. While it is one of those treatments whose effectiveness cannot be directly measured, at 6.5 years post diagnosis I am past the 30% 5-year survival barrier and I am certain Provenge has been part of that success. My cancer has always progressed, but slowly enough that there has always been a plan for the next treatment. I started Pluvicto three months ago and it seems to be working.
The apheresis turned out to be a bellwether event. It was the start of a constant, benign (so far) arrhythmia and borderline hypertension. Likely I had both before. I see my cardiologist again soon, as ADT is no friend to our cardiovascular systems and Pluvicto is not without side effects (but less than traditional chemo).
I read your profile after I sent that, I know backwards. Based on your dx I agree 6.5 years is great so I would have to say your choices of and the actual treatments have done you good. There's just such differences with how we all handle these variables.Wishing you continued good luck with the Pluvicto.
Thanks, TD. I heartily agree with your point on the the individual nature our our cancer. While this forum provides great support and guidance, the choices we make need to be ours, and it can be a lonely and scary path.
But there is always hope - if not for us, for the following generations. I met with doctor running a part of one of the BiTE trials - he somewhat derisively called Provenge a "1980s/1990s technology". Someday there are going to be treatments that will lock down the PCa bastard. Cheers. - joe
No specifics yet - there are a lot of tools but no one can tell the exact sequence best for any man. That alone is going to take time even while the lab nerds work out more targeted therapies. Heck, I think that I'm only on Pluvicto as an unofficial trial, to be honest. My PhD/MD oncologist asked if I was interested. I said sure, even though - as TA related in a recent post about Pluvicto - we are learning that there is a "Goldilocks" time for administering this: Too soon or too late, and it's both ineffective and toxic. But I suppose that can be said about all of these treatments.
They only recently confirmed that we can safely go on Pluvicto after Xofigo (Ra 223). I'm hoping that it works the other way, too, because I think I will eventually need to cycle through all of this horrible treatment sludge, if I'm lucky! Yah, writing that, I guess my definition of "luck" is a bit skewed these days.
I also required the calcium drip- my whole body started "buzzing". I couldn't have driven home. And one more thing to consider- you won't be able to get up and pee for 3-4 hours, and both arms will be unable to bend. You might want to consider bringing along a "helping hand"
I'm looking forward to Provenge being suggested for me. I think I missed an opportunity early in my treatments so now need to wait for the right treatment to pair it with and some other considerations as well.
Although anecdotal there are a few guys here who had Provenge and they have been able to stay on Abiraterone or Xtandi for many years. Seems the Provenge is more of a factor.
did Provenge in2018. Yes Long extraction on Friday and pretty long replacement on Monday after they did whatever they did to the blood cells. 3 fridays and 3 mondays 2 weeks apart. I DID have to have a driver when I did it at U of Chicago. MO and team feel that it punched up my system and I am doing well today - including some mets less dense/distinct.
I am not a doctor or a scientist but it was explained to me as immunotherapy using your own system = enhanced. It seemed sensible to me and I say I did not experience anything that one should be afraid of. I do believe that immunotherapy may have a lot to offer and has a future in a lot of our lives
my friends are glad to help - and we sit and gossip during the procedure. Afterwards we do lunch in the hospital cafeteria which is surprisingly decent
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