Doctor is suggesting Provenge

I wrote back a few weeks ago my dads about prostrate cancer the 2 PSA blood tests came back high a 3,22 then 3.64. he suggests we start on Provenge next. My dad has been on Lupron and Xgeva due to the fact his cancer metastsized to his bones. when he was first diagnosed in December 2014.

I dont know what we should do I thought there were other injections they can try after Lupron Fails.

Anyone been on Provenge? or have any other suggestions. My dad is 78 seems active and in good health looking at him you cant tell anything is wrong. He is my moms primary caregiver she has dialysis 4 times a week 3 hours each time he takes bring her and takes care of her all while fight cancer so with the Provenge we dont know what it will do to him physically if we go for that its a 6 appointment treatment but it takes a toll on you especially since he cares for my mom too.

Im single with two kids I help out as much as i can but I stretched in every direction.

any thoughts would help.

Thank you,

Olivia

39 Replies

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  • Next step is usually Xtandi...and for the bones Xofigo .....Given your dad's age and the fact the PCa is in his bones I doubt Provenge would work...get a good oncologist

  • What will a good oncologist do? Chemotherapy? What options can he offer other than ADT or Provenge?

  • Why do you doubt it would work are you a doctor? Do you have evidence? Or were you on it. Giving me a simplistic answer of "it wont work" is really not helpful. So please educate and help me understand more of what you mean.

  • You do not say how low your dad's PSA went. I assume it did not go below 2. In order of importance:

    1. It may be that a small portion of your dad's prostate cells are no longer remaining quiet in his low testosterone environment. But many of them are. So you would normally keep up the Lupon to maintain the low T environment that is restraining most of the prostate cells, cancerous and not cancerous. Most likely only a small percentage have become "castrate resistant", that is are growing despite low T.

    2. The "standard of care" treatment, now, for metastatic Prostate Cancer is Androgen Depravation Therapy (=Lupron) and chemo (=docetaxel). The chemo has been docetaxel, but may now be jevtana. Normally it is 6 cycles, but you can do a few, and stop if the side effects become unpleasant. Clinical trials demonstrate that it helps to have chemo early. People are starting to believe that everything aimed at the cancer is better to do early.

    3. Radium 223 (xofigo) is FDA approved for bone mets and usually has few side effects.

    4. Provenge is ok, yes, but it does act slowly, and if the bone mets are visible on the CT scans, and growing larger (radiographic progression), the radium has a more established track record I feel sure if you had to pick one over the other.

    5. Is your dad current on his immunizations? Your doctor would no doubt delay the shingles immunization because it is a live virus vaccination, but the pneumonia and flu shots should be fine and the DPT. These will nudge the immune system, and possibly prevent a later bout of inflammation caused by those things in any case.

    6. Possibly you could find and join a once-a-month cancer support group, like Us-Too, near where you live. You would find another source of helpful support there I am confident. Gathering a team of some sort is actually quite helpful, although it may seem difficult.

    7. Is there someone else in the family that has time to go through information on the internet for you?

  • Thanks for response, I feel I have opened up a can of worms some say yes to Provenge on here some say No Im more confused. I need to know and talk to other men who have tried Provange and what it did for them and how they feel.

    Thank you,

    Olvia

  • na. it's all just choices you canmake. better to have choices than not to.

  • Xgeva (denosumab) is slightly better than fosamax or zoledronic acid. Those drugs are designed for osteoporosis, and are thought to protect the bones a little, in this case from bone mets. But they have not been shown to do a great job of it.

    At the time your dad was diagnosed (2014), ADT (=Lupron) was the "standard of care" for metastatic prostate cancer, but in 2015 that became ADT plus chemo. I hope your doctor discussed chemo with you.

    ncbi.nlm.nih.gov/pmc/articl...

  • My dad is on xgeva and keeps getting bad side effects he had to go through so much debts work and all to take. are the studies that daunting . I had hope in it since his sacrum w as already fractured he is now on Lupron 3rd Taxotere the 18th and xgeva .

  • If you think the side effects are from Xgeva, you could try switching to another drug in the same category - a bisphospenate (fosimax or alendronate or zoledronic acid). But it is probably not the Xgeva that is doing it..... These are all drugs aimed at (primarily) dealing with bone weakness (osteoporosis originally), and hoping to delay "skeletal related events" (SREs). Xgeva is a little better at it than the bisphospenates, but not if it causes unpleasant side effects. (The costs are probably different as well. Fosimax cant cost a lot, but I didnt check.)

  • no he didnt talk to us about chemo. And at this point I dont think we want chemo.

  • By the way, neither Provenge nor Radium (xofigo) normally has a significant effect of PSA, which is the thing that triggered your concern. But Radium can cause a dramatic reduction to bone mets. Provenge does something, but neither of those things. How it has its positive effect on "overall survival" is unclear. I conjecture that it acts to damage cancer cells in the blood (CTCs), and so limits new sites of metastasis.

  • I am doing the Provenge thing. It is a little elaborate. I have also done chemo, which is simpler. I wonder if your dad could get chemo while your mom is on dialysis in the same building? The Provenge leukapheresis step is done at the Red Cross, so a different location. How is your mom? Does your dad have hot flashes or other unpleasant side effects from Lupron?

    You are doing a good job, and you dont have to rush. You have time to think. I dont meant that you should allow others to stall you or that they can goof off.

  • Good luck on provenge . glad to hear you are trying it. it seems to be a logical approach and immunotherapy Wil no doubt continue to grow.

  • So you are on Provenge? How long? When did you start? I would lke to know what to expect. Thank you

  • 3 cycles of which I have had one. Dec 2nd and Dec 5th. It was a little bizzare thinking my blood would be connected to a machine for a few (3) hours, but the time passed. I drank a lot of water the day before (64 ozs is the amount the said.) And also the day before that. Ate Tums, and they had Tums there. The re-infusion went smoothly. Not much to tell. You just sit there. Lights were low. You could lay back and rest.

  • Do you have to get ADT injections while you are doing the Provenge?

  • You dont have to do anything.

    But more specifically, the ADT shots often last 3 months or six months, so it doesn't come up. And the ADT can be deferred for a week or two probably without any measurable effect. [That is, the exact date that the depot becomes empty is something that no one even asks about.]

    If the time came up for another ADT shot in the period during which your dad was getting provenge, the shot could be scheduled for whenever it was convenient for you.

  • Here is a comment by Chuck Drake of Johns Hopkins on what to expect with Provenge

  • Martin,

    I read where chemo damages the immune system in a way that precludes Provenge from delivering good results. What have your Docs said?

    Gus

  • No one said anything. The impact on the immune system as a side effect of chemo that is most often is mentioned is "neutropenia". This is a transient loss of neutrophil cells, and the associated temporary vulnerability to infection. A drug called Neulasta is usually prescribed to induce the bone marrow to generate more of them, with a side effect of mild bone pain.

    Apparently, this is not relevant to Provenge, which is a T cell strategy, and in any case, my chemo was almost a year ago.

  • Here is Dr Kwon referring to an unspecified and more general conflict with the immune system, but dismissing it. What Dr Kwon does say is that he was surprised to see that there may be less need for Provenge after chemo, as there are many cell fragments in the environment which serve as a vaccine, lowering the need for Provenge to fulfill that role. However it seems to me that this is in the context of the administration of a checkpoint blocker.

  • I think it's beautiful how your dad takes care of your mom and I'm sure he takes great pride in it so you don't want to take that from him although an extra hand may be needed. it semi many men tolerate chemo well , and for some days whichever treatment you choose dad Wil have some down days. us he opposed to a nurse a few hours on those days, just someone local perhaps that they both get along with. I just went through something similar with my grandparents, and letting your dad keep his pride of caring for mom is important , and having someone to help him take care of himself is too, because being a primary caretaker is stressful and exhausting. God luck. you know your dad best. trust yourself

  • I had Provenge treatment in Sep/Oct. I say go for it. You have nothing to lose. The side effects are minimal, I had none. Yes, it takes 5-6 hrs to go thru each apheresis, and about three hours for the re-injection of the treated cells. If money is not an issue, the treatment does not seem like it will cause any harm. Unlike Lupron, Xgeva, chemo and Xtandi . Wishing you and your Dad the best of luck!

  • Thank you, How are you doing and feeling since your last treatment? On Provenge? Now what do you look and wait for? do they do blood tests, scans what how do they know its working? Also wil you still have to take a ADT shot?

    Thank You, Olivia

  • Olivia, Good questions. The Provenge treatment had no side effects for me. My PSA is continuing to climb. Yes I still take Lupron injection every 12 weeks. The Provenge treatment require a check of your veins, to make sure they are adequate for the apheresis. Provenge consists of three two-phase treatments. The first day of treatment, you are hooked up to a centrifuge. One arm/vein with a big canula (needle) is used to draw blood from you. The blood passes thru a centrifuge and blood plasma is separated and put into the collection bag, about 175-200 ml is removed. The other arm, the return arm, gets the blood product not used (red & white blood cells. Then, once enough blood plasma is removed, they start separating the white blood cells from your blood, with the remaining red blood cells and plasma returned to your return vein. They collect at least 100 ml, but prefer 275 ml, if possible. This process takes 4-5 hrs. Once the blood collection is complete, the blood is packaged and rush shipped to the company for treatment. Three days later, you return and they put the treated white blood cells back into your body (arm) This takes 3-4 hrs. Two weeks later and four weeks later, they repeat this process. That is it. No way to directly measure any improvements. The FDA supervised clinical trial showed that men who had this treatment lived a few months longer. Which is why it was approved. If money is an issue, don't go thru this treatment, it is very expensive, over $100,000, and the benefit is minimal. But if your insurance will pay for it, then it will only cost you time. Unfortunately, my other issues are still continuing. You can read my other posts to see my status.

  • I moved in with my father for a month last May as he had the Provenge treatment. At the time he was 95. He tolerated the treatment well. You have to stick to the time table. My understanding is that Provenge is slow acting -- the PSA will not go down. Make sure that it is covered by your father's insurance. Transportation was a problem but the medical outfit provided transportation which simplified life. So ask if they will provide transportation. Hopefully, Provenge did some good.

  • Thank you

  • Im wondering what made you to go through with this Provenge for your dad? Im reading and doing so much research some good some bad Im at a loss. What specifically made you and your dad feel it was the next best thing? Any thoughts are helpful. I read the man or docotr who invented the PSA screening test is against Provenge and Ifeel like he is the God father of Urology and yet he said it gives patients "false hope" any input from you as a daughter to another daughter whos dad have the same illness would help. Thank you,

    Olivia

  • I am his son. It was my father's decision and we were told that he would have no problem tolerating the treatment. The hope was that it would slow down the progression. The doctor wants to start Zytiga and Xgeva. My father needs to decide by mid-January. He is 96 and has had an alarming loss of stamina the last 6 months. No doubt Lupron has not helped. He is tending towards palliative care. Again, it will be his decision.

    Eventually down the road, the researchers will figure out which patients via genetic profiling will benefit from the various treatments. In my opinion the treatment of prostate cancer seems 10 years behind other cancers. Genetic profiling has helped create exciting breakthroughs in the treatment of leukemias and lymphomas. Now the doctors know what drugs will work with different patients.

  • Green,

    Was your fathers loss of stamina after the Provenge...could it be a side effect...I read where Provenge was harmful in older men.

    Gus

  • Where did you read it? I read it was good for older men.

  • Yes. He would get winded easily. At his age determination of cause and effect is difficult. Conceptually, Provenge should not be causing this.

  • I read the opposite it was for men 65 and older

  • Hi Greenblue!

    I noted your concern that your father was experiencing a loss of stamina and you suspected it was a result of being on Lupron.

    Many on Lupron experience this. I suggest you check out Dr. Meyers video which talks about the use of Lupron on 'the elderly' (over 90).

    askdrmyers.wordpress.com/20...

    I am now 63 and I started with Lupron 8 years ago. I found it to be a 'tough' drug on many levels.

    Firstly I became overly sensitive. I could hardly watch the news without being driven to tears.

    Once I was pulled over for speeding and the poor officer had to witness me be overcome with sadness and was crying uncontrollably!! It was comical of course, but nevertheless that is how I was feeling.

    Secondly, I found my mind getting 'fogged'. I couldn't solve solve slightly complicated problems and it was hard to focus. If you asked me what I had for breakfast that same day I would have problems recalling with accuracy.

    I have since switched to Degarelix/ Firmagon. The only side effect I have with that is pain and swelling around the injection site. It takes about 3 days to get over this, but I prefer it since I feel my mind has returned to 80% of capacity.

    I can't imagine how I would have handled it at the age of 96! By the way I do take the Estrogen patches as suggested by Dr. Meyers. Apart from breast enlargement I have hardly any issues with it.

    PS. The officer still gave me the ticket!

  • Terje,

    Thanks. This is helpful info which may positively impact his quality of life. I will follow up with his doctor.

  • Who invented PSA screening? I see a lot of people claiming to be the one. Also a lot claiming to be the one who discovered that some prostate cells can create their own testosterone out of ... not sure what, maybe cholesterol, maybe some other steroid. I would love to be able to get to the origin of these things. If only just to be able to give the right person credit.

  • You used the phrase "after Lupron fails". That phrase is ok if the full phrase you mean is "after Lupron fails to do everything that we want". But if you mean "after Lupron fails to do anything we want", you are pretty far away from that point right now. It still is calming down most of the prostate cancer cells. Just a few are acting up.

    Sorry if I said that already, or it didnt need to be said.

  • The very first response, gusgold's, I think still looks the best.

    Xtandi (or enzalutimide) is a well respected 2nd line anti-androgen. It is some pills you take each day, and no real restrictions or liver tests needed (as with abiraterone). Very simple. Very good. It seems perfect to achieve what you want. Which is (as I understand it) to bring the PSA under control for a bit, with minimum additional medical considerations or complications for your dad.

    Another thing about enzalutimide is that many clinical trials look for "failure" of some 2nd level anti-androgen as an admission requirement to the trial. This means that if enzalutimide should fail at some point, you would be in the target population for trials of the very promising "checkpoint blockade". This means that you would need to become more comfortable with looking for trials on "trials.gov" and the vocabulary, but you should have the time to do this thanks to enzalutimide's likely duration of successful action.

    Gusgold's comment that you can do more than one thing is also good. He suggests looking at a treatment for the bone mets in Xofigo, or radium 223. It is another recent drug, with low risk to your dads health, and targeted at one of the major dangers in prostate cancer - the bone mets.

    These seem to me to be near perfect suggestions. I don't say "perfect" only because I don't want to "close the book" on what might be better. But these one or two treatments seem excellent and appropriate for you at this point.

    My lingering issue is the chemo. I suppose that the doctor did not suggest chemo because he (like you) thought it might be too toxic.

    1. FIrst, it might be good to clarify that fact. Some trials require prior chemo, now that the effectiveness of chemo is so well established. They allow an exception in the case that it has been considered but rejected. That is, a trial will not require as a pre-condition that anyone had chosen a treatment that their doctor thought would harm them.

    2. Secondly, as to the purpose of the chemo. Normally chemo is given at a certain dose (95 something) and for a certain number of times (6 to 10) to have maximum effect. But in some more fragile patients the dose is reduced (by 20%) and the number of cycles is reduced. My mom had 5 cycles rather than 6 cycles, and had a complete remission for 10 years when she died of another cause - pneumonia after hip fracture after alzheimers related lower ECOG score. My point is that you might be looking for something quite other than "maximum effect" out of the chemo: namely the destruction of some cells to provide fragments, IN PLACE OF provenge, as Eugene Kwon's video suggests. Just a concept, and of course one that your doctor is unlikely to like. Too bad. But you could do one cycle, and then that's it. Always though, I think, make sure that someone you trust agrees with you. If only because at some point, someone will be reviewing the medical records and say "What was this about?" and look at you.

  • Genie-Paul reports bad side effects traced to Xtandi/enzalutimide. A caution.

    A few people have something called the "ARV7" variant. This variant does not respond well to enzalutimide or abiraterone. Johns Hopkins has a test for this variant, which I would take for myself, especially if there was a concern about side effects.

    paact.help/ar-v7-blood-test...

    Another (new) caution with enza: risk of falls. possible weakness? fatigue? unknown.

    researchtopractice.com/GUPe...

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