Confused why one must continue Lupron since it shows it's not working?

My father diagnosed with prostrate cancer spread to his bones. He is doing well. My question is after about 15 months on lupron injections monthly his PSA started to rise so the doctor suggested we do Provenge and we did that now I'm told his PSA is still rising so the doctor said he will put him on xgeva or xtandi along with the lupron injections. What I want to know if Lupron is no longer keeping his PSA levels down why do we have to continue on lupron? Secondly when we were told to do provange he never told us my dad would immediately go on pills after PROVANGE TREATMENT. So now I wonder between lupron, provange and now xtandi what is going to keep him alive the longest how do they know when they are not giving provange a chance to do it's magic and why continue lupron injection indefinitely if it hasn't been able to keep his PSA down? This all sounds confusing to me?

Thank you all kindly I hope so,eons who has been through this can help me?

56 Replies

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  • SOME of the cancer cells have figured a way around Lupron, but Lupron continues to control the rest. My story is similar. I did Provenge then almost immediately added Zytiga, but I'm still on Lupron. That's been my regiment since November 2014.

  • My husband oncologist changed the prednisone with Zitiga to DEXAMETHASONE INSTEAD. He is at vanderbilt university cancer clinic. Specializes in PROSTATE cancer. Believes the dexamethasone is better choice than prednisone for lowering the PSA.

  • Thank u

  • Prednisone is not intended to lower the PSA. Its purpose is something about cortisol.

    paact.help/adding-prednison...

    Prednisone does seems to be used for other reasons in Japan, and it is reported to find some strong theraputic effect on a quite small number of people. I can try to find the citation if you wish.

  • Prednisone is used to protect your liver

  • Prednisone is an anti-inflammatory which is used for a boatload of conditions (WebMD). Zytiga, and I guess most oral chemo's mess with the liver. I take 5 mg a day, some take ten.

    My sister, who is a bad asthmatic, eats them like candy when called for. My nephew was on them for 18 months as an infant/toddler.

  • I'm down from 10 mg a day to 5 because prednisone causes me to bruise so easily. The bruises aren't as thick since the decrease, & my liver is still fine many months later.

  • I don't know your age Neal, nor do I know if it has anything to do with it, but I chalked my inability to heal from lack of iron. Just basic stuff, like a bruise, a cut, a bug bite, a whitehead from hell, anything. Just six months ago I was so weak I - was - about - to - die! Get it.

    I saw my Onc this morning, and as always I try to be jovial. Some faces are the same, some are different, but they are all older than me. I want to cry.

    Sorry man, Joe

  • I'm 75. This has been going on since I was 72. An oncology nurse told me my bruising was from prednisone. And it isn't as bad since they cut my dose in half.

  • Vandy is awesome! They've kept me going for 4 years and I have mets everywhere!

  • Thank you, hope all is well with you. I didn't know if this was all normal part of dealing with this disease.

  • I was told I'd be on Lupron the rest of my life. There is another medication (maybe it's Firmagon?) that plays the same role, but my health plan doesn't offer it.

  • How about radium 223 (XOFIGO) for PROSTATE cancer to the bones??

  • Rad 223/xofigo is only if he is pain from bone mets, and I believe that can only be used once. I decided to wait till I actually had pain from my mets to use that.

  • Oncologist at vanderbilt put husband on radium 223 ( he was having some bone pain & has bone mets in numerous places. ) dr chism ((ongologist ) believes the radium 223 will help stop pain & progression of PROSTATE bone cancer. He has had 5 treatments & being a little more fatigued is only symptom. He is 82 - stage 4 for 5 years in may-2017.

  • Thank you, best of health to you both

  • He is getting an injection of Xgeva monthly

  • I asked my oncologist about radium 223 and he said that since I don't have bone pain it is not indicated.

  • That's not right . Talk to your oncologist again. I am not currently experiencing pain and I am starting Xofigo (radium 223) in a month.

  • Provenge does not generally do much for the psa , makes it hard to do nothing and watch it go into the thousands, treatment now is a better idea. Even though some of the cancer cells have built up an immunity to the Lupron, there are millions of them that are still responding to lupron, to ignore that would be a mistake of tragic proportions. When I was on zytiga and xtandi at the same time it was enough to keep by testosterone well below 20, not sure if xtandi alone can do that. I was dxed as stage 4 widespread to the bones back in June of 2006, only recently started chemo. been through the gamut of oral medications. My advice is to follow your Drs. advice. What kind of psa are we talking about. I got almost 3 years out of xtandi and another 2 from zytiga, that was after I was heavily treated with ketoconazole, estrogens, and antiandrogens with Lupron before these newer drugs were fda approved

  • Thank you, his PSA was .44 then it started to rise to 3.50 now as of last wekk its 8.35

  • Dan - hope you continue to fight this horrible disease - my husband has a question- he lost his hair with chemo twice - did you lose your hair with Provenge - he's had one treatment- 2 to go

  • When I was on Taxatare 12 years ago did not lose my hair and did not get tired at all! Oncologist was amazed! I was getting infusion therapy every 2 weeks. As for Provenge treatment that I did in 2012 did not loose hair! I wish your husband good luck and no matter what happens keep very positive! Have faith in God always!

  • Thank you - you too

  • Are you sure it was every 2 weeks, mine is every 3 weeks, there is a lower taxol they give 3 out of 4 weeks where hair is not usually lost

  • It was every 2 weeks and it was given a little stronger every time! And I have the same Oncologists that I had 12 years ago! He is the greatest! I am very thankful to this great man taking care of me!

  • Penny, I never did provenge, at the time I could have I was on zytiga and could not do it while taking prednisone, My expert Oncologist was not a big fan of provenge for me. I am losing my hair with chemo, has really thinned out to some bald spots in just last 4 days. I was always lucky to have a very thick head of hair, before chemo.

  • I had PROVENGE this fall, it is not a chemo treatment. They extract white blood cells, treat them to be more sensitive to prostate cancer and infuse them back in. Hair loss is not a normal side effect of Provenge.

  • My dad did provange and he did not lose any hair

  • Nobody loses hair with Provenge , it is a immune therapy

  • Provenge is supposed to shrink the prostate tumors - won't affect the PSA - hoping it works for my husband mike - hang in there everyone

  • What kind of costs did you have with Xtandi and then zytiga? I'm not sure I can afford what I hear the costs are. Are there "help" programs, I know medicare and my supplement and my prescription plan don't help?

  • there is a good chance if you contact the company, I know both have a program to provide these drugs for people who do not have the money. so yes there is help, go to the company website, perhaps others have that info.

    Dan

  • Iv been on Lupron for about five years, and although we may not be getting the results we want all the time, I believe it is still helping to suppress the testosterone which is all it is supposed to do

    so I would venture to guess that it is still somewhat beneficial .

    standard treatment

  • I think so too - I don't think you should ever quit Lupron

  • My husband got off any prostate cancer treatment for 18 months - prostate cancer came back in his lymph nodes - he was Unprotected for 18 months - Now is back on Lupron with Provenge - Lupron with zytiga- Lupron with chemo - Lupron with radiation- All treatments have Lupron - keeps testosterone suppressed - you need this - PSA is low - testosterone is low - hope this helps - mike had been fighting this since 2012 - he's 69 years young

  • If Lupron quits working mike is going to switch to Firmagon 👍🏻

    Thanks - penny

  • that may be a good idea, especially if he is not achieving a very low testosterone with Lupron.

  • Thank you Penny,

    Olivia

  • Anytime - we're all learning

  • Olivia. I am going to speculate here because I was wondering about some of the same questions. Since advanced prostate cancer is a mix of different types of cells, the Lupron may still be repressing those cells that are sensitive to it. The rising PSA reflect increased numbers of cells that are less sensitive to Lupron. From what I read, Provenge is an immune enhancer but Immune enhancers don't necessarily influence PSA short term. They seem to make a difference in long term survival. Xtandi blocks Androgen Receptors more completely than Casodex. I once read that castrate resistant PCa cells are still in need of testosterone but in maybe 1/100th or 1/1000th the amount of pretreatment cancer cells. So the Xtandi is blocking more of the androgen receptors that are transferring testosterone into the nuclei of the cancer cells.

    This is all my speculation and what I have read.

    Regards,

    Craig

  • I agree with all you have said. I have been on Lupron continuously for 17 years. I started with a PSA of 30 in 1999. I would not go off of it! I am taking Xtandi as well now. Mu PSA at Duke last week was .09.

  • Any side effects from xtandi? And how long have you been on that?

    Thank you, Olivia

  • Thank you, Craig u sound more understandable than our doctor

  • Good Morning Oliva,

    Has your Dad had a genetic blood test--like Guardant360?

    If his prostate cancer has a genetic defect, then there is a PARP inhibitor, trade name Lynparza, which would be available for his treatment.

    Best wishes for his future battle!

  • No he hasn't what is that? And what does it do?

  • Google Guardant360 for details. As I mentioned, if his cancer is determined to have an ATM defect, his Med Onc would prescribe Lynparza. Google Lynparza, as it could have amazing results. I have taken Lynparza since late October and my PSA has declined. It was prescribed after the results of my Guardant360 genetic blood test.

  • Olivia,

    My father had the Provenge treatment and he is going on Zytiga and Prednisone. He will get a monthly shot of Xgeva to strengthen his bones. He is still on Lupron. Xtandi has too high of a probability of falling so that was ruled out. My father is 96. He goes to a practice that does drug trials so they are well-versed in the latest developments/treatments. For the older patients on Zytiga and Prednisone, the doctor said that his patients generally feel better.

  • Olivia wrote:

    "What I want to know if Lupron is no longer keeping his PSA levels down why do we have to continue on lupron?"

    The role of Lupron is to inhibit testosterone production. Lupron doesn't stop working - the PCa finds other ways to get the androgen it needs. The patient has become not castrate enough. & so Lupron is retained as other drugs are added.

    -Patrick

  • Part of the treatment is to keep testosterone below 50,which is what the LupRon does,the other drugs such as xtandiabetes or casidex are androgen drugs all work together

  • Thank you

  • Research reported on this site by Patrick O'Shea, & in the current online USToo newsletter (free), showed that guys who had Zytiga before Xtandi survived an average of 4+ months longer than guys who did it the other way around.

  • Olivia, I also am on Lupron (Eligard) and I get an injection every 3 months. All prostrate cancer cells have an area on their cell membrane called an AR (androgen receptor). These cells must have an androgen in the area to be able to multiply. Androgens include testosterone and androgen chemicals formed in the adrenal medullas on top of the kidneys where adrenaline is formed. So just stopping testosterone is not the only thing that will stop the progression. Lupron "fools" the pituitary gland at the top of the spine in men to stop making ALL androgens, which keeps the prostate cells from multiplying. In women it causes multiple ovulation. When cancerous prostate cells multiply they release and enzyme which is measured by the PSA. So some of the cells may still multiply and go into the blood stream as single cells. These cells may go anywhere in the body, but they can not multiply unless there are androgens present. So they have an affinity for the inside of long bones, where they attach. Then they sink into the bone leaving a tiny pock mark on the bone. Over time the bone can become brittle. Once the cell enters the bone it is stuck there and can not multiply to make tumors without androgens present in the blood. So that is why I get Lupron injections. I wish your father well.

  • Jim, how long have you been on Lupton? Nick

  • Hi Nick, I have been on Lupron (Eligard the generic) for 5 and 1/2 years. I am lucky since my PSA has been 0.00 for all of that time. I also have had 72 radiations, 42 in 2007 and an additional 30 in 2011 when they found my PSA increasing and bone metastasis. I also have kidney problems, heart stint with atrial fibrillation, and insulin dependent diabetes. I am 71 years old. I get an Eligard shot every 3 months. I have no noticeable side effects for about 2 years now and I get around pretty well. I am on Coumadin (Warfarin) for the atrial fibrillation in my heart to prevent blood clots and 14 other medicines every day. Hope all is well with you and enjoy life to the fullest!

  • May I ask who you see at vanderbilt for oncology? We see dr david chism. Are you still pleased with treatment?. Has radium 223 been a treatment? If so- what treatment followed radium 223? My husband PSA continued to rise following radium 223!

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