Next step Provenge?

[Shepard]

I am now in my fifth year with advanced prostrate cancer and 78 years. Surgery, radiation and lupron with bicalutramide have failed. Now Provenge may be offered. Guess I should be counting my blessings as I have been productive during this period. I am awaiting results from CT and bone scans to determine mets. Bone density test show three out of five measurements with high risk of breakage. My interpretation of the provenge studies show only a small extension of life. I am wondering at this point if the side effects are worth a possible short term benefit?

[YostConner]

I did Provenge in the fall of 2014. The main side effect is the cost! There's no way to prove Provenge extends any individual's life, but in my case, I think that and Zytiga have produced results. The Provenge process for the patient is pretty easy. If you don't have good veins in both arms you may need a port. I did. It wasn't a big deal other than keeping it clean. The collection process might leave you cold (they had warm blankets), and it may make you tingly from depletion of calcium, but they can medicate for that quickly. Infusion was a breeze. I still work full time, but I took full days off for both collection and infusion just to be able to relax. Otherwise, a little fatigue, but nothing major. Good luck with your decision!

[Dan59]

Shepard, I am thinking you may want to consider zometa or the newer bisphosphonate, to give strength to those bones , speak to your Oncolologist about this. Also you may be a good candidate for either zytiga or xtandi some of the newer oral treatments. If psa is relatively stable Provenge would be ok. I think xtandi can be taken with provenge , but not zytiga because of the need for a steroid with zytiga, again some things to talk to the oncologist about. Good Luck, and let us know how things go.

Dan

[Pennysue1 in reply to Dan59]

My husband Mike is taking zytiga & doing radiation - upper & lower body - the prostate cancer spread to his lymph nodes - at first the radiation made him sick but now taking something for nausea - seems to be better - good luck to all of you - keep us informed

[Lakefisher]

I did Provenge last fall. I didn't need a port; however, they taped my arms down to make sure the needles didn't pop out. So the worst part of the process was not being able to go to the bathroom for 4 hours. The worst side effects I had were alergy-like symptoms.

If you are on Medicare the treatment is free if you meet the requirements.

[Hidden in reply to Lakefisher]

I'd piss myself, no doubt.

[Shepard]

Thank you for your response. At this point, I think I can handle unpleasantness in the short term. My main concern is quality of life. Still have some questions about the effectiveness of this treatment, but will probably go along with it if for no other reason than to add to the knowledge base. Wishing you a good long term outcome.

[Hidden]

As far as side effects, aside from being creeped out, I didnt have any. The benefits are better than they say, because those on the placebo arm were able to cross over to provenge on progression. 1 year is a better estimate of mean survival benefit.

earlier is better. lower tumor burden is better.

do you have osteoporosis not cancer related? or maybe due to ADT? It is not damage due to large bone mets, or is it?? what is your doubling time?

falling down and breaking your hip seems like the big danger.

[JoelT]

Please don't disparage Provenge for its small survival benefit compared to the other new drugs like Xtandi and Zytiga. Provenge MEDIUM survival advantage was 4.1 months over the control group; Xtandi 4.8 months and Zytiga 4.4 months. Basically, these numbers are the same.

They all have potential side effects but most men experience many less and usually much less severe when having Provenge than either Xtandi or Zytiga.

Nobody can say that they did or they did not have a benefit from having Provenge. Since PSA will not be effected (this DOES NOT mean that you didn't receive a survival benefit) and since, universally, most men went on to other treatments it is impossible to know if you as an individual did or did not receive any benefit.

As far as cost, if you average the number of months a man is expected to be on each of the treatments the costs are relatively close (granted- Provenge is probably to most expensive).

Please rely on facts when making treatment decisions.

The reality is that nobody knows what treatment might provide a benefit and which will not. Also, nobody knows which of us will be the happy receiver to what benefit from any of these treatments. You might get 20 months from Provenge, but nothing from the other treatments. Remember, statistic only predict group trends, they do not predict an individual's response.

Joel

[Shepard in reply to JoelT]

I meet with my Urologist today and appreciate the quality responses. I try to arm myself with good questions for doctor visits. My approach to selecting treatments has been to choose the fail safe path (so as not to exclude future alternatives.) Provenge is of interest to me as I think it meets this criteria. I do have a question as to "how do I know if it is working if PSA is not an indicator." My bones density issue is being treated with oral calcium and denosumab injection (six month interval.) I am healthy otherwise. Do have pain which I handle by meditation. I still work on the ranch every day and volunteer with hospice. My military training makes me a realist. My goal is to know where I am and where I am going. I appreciate HealthUnlocked for helping and pray blessing to all members.

[JoelT in reply to Shepard]

The bottom line is that there is no way to know if Provenge has provided you with any benefit. All we can do is rely on the evidence from the clinical trials (actually 3 different phase 3 trials).

Just like PSA, Xofigo doesn't effect PSA, yet I have never heard anyone question its effectiveness. Sometimes we need to have faith and hope, this might be one of those situations.

Joel

[Shepard in reply to Shepard]

Met with my urologist and we agreed that I should return to Bicalutamide to control rising PSA before moving to Provenge. Of greater concern to me at the moment is osteoporosis resulting from IMRT and probably age. I am hopeful that the Calcium supplements, vitamin D, and work on the ranch will help. I have promised that I will resist risky behavior on the ranch considering that such work is a danger for bone breakage. Will have a discussion with the cattle about this.

[Drcrunch in reply to JoelT]

Before I took the Provenge treatment, my Oncologist told me that she sent 6 patients for treatment. Two patients were in wheelchairs and are now playing tennis. One patient is now off medicine and tests show no evidence of cancer. Can this really be true or is this a pep talk. Very unethical if she lied, but nurses support these statements. Wow!. Marty

[Hidden in reply to JoelT]

"it is impossible to know"

I think that is overstating it. There must be the possibility.

Maybe we don't understand how Provenge acts so can't tell if it is acting in a specific person, but there must be something that it is doing to convey survival benefit, and that something must be objective.

[Hidden in reply to JoelT]

"most men went on to other treatments"

Provenge should not be a reason to delay any other treatment that otherwise seems advisable.

[ultraguy]

I did Provenge and had little or no side effects. My PSA at the time was 20 and now, 6 months later is 30 and, while the recent bone/CT scans show some progression, I'm generally feeling good during and after the Provenge treatment.

[Shepard]

No Provenge at this time as PSA has increased three fold within three months, but still only 1.10. Maybe just a spike. Completed a PET scan which was negative. Radiation gave me vertebra compression with osteoporosis. Three months of physical therapy has helped. Staying active on the farm - no idea what the next chapter will be, but will stay tuned-in!

[Shepard]

August 2017 CT shows lymph node involvement and PSA has risen from 1.1 to 4.28 (six months). Doctor suggest Provenge since I continue to be healthy in other measures. I have been exceedingly fortunate over these past seven years to continue work on my ranch. Robotic surgery, radiation, hormone treatments and Bicalutamide have been challenging, but I am still vertical. It is likely that Agent Orange exposure in Vietnam sent me on this journey. As a career soldier, I have tried to deal with each challenge with a military mind-set. I appreciate the posts from you guys who have completed Provenge. I am preparing to give it a try and hope it is a solution for all of us.

[Shepard]

I completed the first session of Provenge. Collection had complications with nausea probably due to low blood sugar. I had received conflicting instructions: printed instructions specified low fat breakfast; techs told me to eat a heavy breakfast with bacon and eggs! I will try to eat more next time. I had prepared with high calcium input days before. Large consumption of calcium (TUMS) during the process and recovered quickly after the session. Reinfussion is a breeze. Three days later doing fine with only minor allergy symptoms. I will enjoy a week off and then return to session two. My main issue is with incontinence during the three hours. There is some back pain (maybe kidney source) and I seemed to produce a lot of fluid. Dignity was bent, but recovered, I may try an external catheter for the next session.

[Shepard]

Have now completed the three sets of collection and reinfusion. Collection session two was the best because I had an attentive tech. Important to adjust the pressure and flow. The final collection was mildly unpleasant (I ate 24 Tums) probably due to a return of the first tech. Third reinfusion also presented some mild reactions of temp spikes and nausea. Have not experienced the slight euphoria that I had from reinfusions one and two. Will meet with my Doctor in six weeks. I know there will be follow-on treatment (I am now changed to three month interval for Lupron.) Doctor mentioned Zytiga earlier, but I am conflicted about it over Xtandi. I will question him and hope for a convincing answer, if one exists. At the moment, I have no regrets about trying the Provenge. The process is tolerable when you understand how quickly you recovere from the trauma of the collection. I apparently had some sensitivity to the anti-coagulant. After it was flushed I felt fine. Be prepared for bladder challenges. An external catheter gave me comfort and a measure of dignity.

[leswell in reply to Shepard]

I’m done with punching “like, like, like”. Just want you to know, 5 months later, what a relief it is tonight to hear you all “talking”. Your NGI and moving on with new treatments, learning from each other, and discussing clinical trials makes me think our own lives aren’t quite over.

You will have to put up with me again, I fear, in a more recent exchange, but I want to thank you for what you wrote before we were sure Les was mCRPC and when we believed he could be the next Nalakrats or gourd_dancer. Speaking of singers and dancers, the other joyful escape tonight was in Lady Gaga and Tony Bennett’s repeat performance, “Cheek to Cheek” on “Great Performances”. In my next life I will sing and dance like that lady. Mrs. S