Lupron in my future

I was diagnosed in 2005 with a PSA of 4.5 and a Gleason score of 7. My oncologist at the time was Dr. Peter Grimm, an innovator in brachy therapy, who advised five weeks of spot radiation followed by the brachy surgery. All went well until 2013 when my PSA began to rise and Dr. Grimm advised cryotherapy because he believed the cancer still remained in the prostate (following MRI, bone scans et. al). This brought my PSA down until late in 2015. Since that time I have had another another biopsy, this one taking 12 samples, and the usual tests to determine if the cancer has spread. The biopsy was negative. Unfortunately, the devoted Dr. Grimm died last year. The doctor who performed the cryo and the extra biopsy retired. (He had wanted to perform a "saturation" biopsy to find out if any cancerous cells remained inside the organ.) I was urged by him to seek treatment from Dr. Daniel Lin, head of Urology/Oncology at University of Washington Medical Center. We had a first meeting three months ago. My PSA then had risen to 5. We meet again in two weeks after my next PSA. He indicated that hormone therapy was the next stage. Needless to say, this will be a challenge, given what I know about the side effects. I have found support from the local chapter of Ustoo and I plan to attend the monthly meetings. Does this sound like a "normal" course of diagnosis and treatment?

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  • I'm sorry to hear of your recurrence.

    As far as I know, Lupron is indeed the "normal" next step in treatment, and experience indicates that it's better to start it early, while the PSA is low and the cancer not yet all over the place.

    As for the side effects of Lupron, I was only on Lupron for a short time and I didn't like the side effects (hot flushes, loss of libido, reduction of athletic ability, minor joint pain.) However I've heard from some men that they get used to it, hot flushes either disappear on their own or can be countered with drugs, and, after a while, it ceases to be a problem for them.

    Here are some other things you might wish to discuss with the doctor.

    1. Lupron + chemotherapy.

    It's a very aggressive approach but there are indications that the combination therapy extends life longer than Lupron by itself followed by chemo after Lupron fails. The downside is that chemo can be rough and, for some lucky men (if men with recurrent cancer are ever lucky), Lupron works for many years and no other treatment is ever needed.

    2. Lupron + immunotherapy.

    There are indications that immunotherapy (Provenge, Prostvac?, others?) is not a very powerful treatment when given after other treatments have all failed. However, some doctors are reporting that, when given while the cancer is really damaged by Lupron, the immunotherapy can be very effective in knocking it down further and prolonging life.

    3. No lupron until after Choline C-11 PET scan.

    These scans are available at the Mayo Clinic and I think at another location too. In _some_ cases the scans identify a very small number of tumors outside the prostate that can be treated with surgery or radiation with a hope of a cure. I don't know what percentage of men who do this have few enough metastases to attempt this treatment, or what percentage of men who do are successfully treated. It would be possible to call the Mayo Clinic for more information, but also consult your oncologist who may (or may not) already have some information about the nature of your metastases, and may be able to help you think through the options.

    Options 1 and 2 above might be available in clinical trials. I think trials are a good way to get treatment because, oftentimes, you are followed closely, tested frequently, and have access to doctors with up to date scientific knowledge.

    I don't know that any of these options are better than just getting on Lupron, but they might be worth discussing with a good oncologist.

    Best of luck.

    Alan

  • Some more things to discuss with the doc.

    Some medical oncologists specializing in prostate cancer believe that ADT2 (Lupron + an antiandrogen like Casodex) or ADT3 (ADT2 plus dutasteride (Avodart)) is better than Lupron alone. Some famous PCa specialists believe in this approach.

    Here's a very useful article by Chuck Maack about ADT3:

    ustoowichita.org/pdf/Triple...

    Chuck is a patient still alive 20 years after his cancer recurrence. He's not a doctor but he has a pretty good brain and he's been studying this stuff for many years now. He sometimes participates in this forum and his own website has many other useful articles.

    If your PSA gets to a very low value on Lupron you may also be a candidate for intermittent ADT, possibly with Avodart continued during the off periods. I think Chuck has some information about that too on his website.

    Again, best of luck.

    Alan

  • Alan,

    I agree with MOST of what you say, but them dang hot flashes won't leave me alone. I've tried meds and herbals, but nothing helped. So, I just got used to them. The weird thing is, I get them like a women would get her friend, and they subside for a few weeks and bam, again. It's 45 out right now and it feels balmy.

    Joe

  • Joe Kam..., how far out are you from any cancer treatment or re-occurrence of cancer? I am 76 and I had PC surgery 23 years ago and had to have my testicles removed several years later to stop the rising PSA. It worked but left me with severe hot flashes for 18 years averaging 1-2 an hour, sometimes so severe that I thought I would set the bed on fire. Because I had been cancer free with a very low PSA # for 18 years, a newer urologist suggested I consider monthly testosterone injections to help the hot flashes as other meds had no effect. At that time it was still controversial due to the fact that prostate cancer tends to feed off testosterone and also because at that time it was also considered to be a slight heart risk for older men. Being I had had enough of the hot flashes interfering with my life, I decided to do it. IT WAS A MIRACLE DRUG! No more hot flashes and I ate better, I slept better, and I had much more energy!

    However a year later I had a heart attack and because of the current research at the time showing a possible heart link, I was taken off of it and the hot flashes came right back. But about a year ago, a study out of Sweden involving over 80,000 men, testosterone was found to be actually heart healthy! So I'm back on it with NO problems. it certainly is something worth checking into as I know what you are going through.

  • Hi ng#'s,

    I'm 57, and had a recurrence about three years ago. I'm in year seven with it. Testosterone is out for me. I'm glad you can take it, because that's what we're all missing. Uro even gave me progesterone one time for the flashes, that didn't work either. But, I didn't/don't have them nearly as bad as you describe. That's legitimately nasty! Good Luck with future treatments.

    Joe

  • Did you try any other medications to combat the hot flashes. I've read about some, both pills and patches.

  • Yes, I have tried several pills and ointments but none helped although some lessened the hot flashes but caused more worse side effects such as dizziness and sleepiness. can't recall their names. One was a drug used for epilepsy. Bad stuff. And be careful of healthfood store remedies, they can negatively affect PC.

  • I have heard that acupuncture can help with hot flashes, and some other prescription meds.

  • Yes, Alan, I am hoping for intermittent at this stage. Wish me luck.

  • Thanks for the very informative post, Alan. Malecare is, indeed, all about caring for males with prostate cancer. My last oncologist did suggest I get a Choline PT Scan, which he said is available at a location in California. I will discuss this will Dr. Lin. Thanks for jogging my memory about the scan.

  • Alan, Do you know if Medicare covers Choline 11 PET?

  • Sorry, I don't know if Medicare covers it. Maybe someone else can say. If not, a call to the California clinic or the Mayo Clinic should get an answer for you.

  • Alan, this is a follow-up to your response to my post about Lupron treatment in my near future. Your third suggestion was Choline CT Scan before any ADT. That is exactly what my last oncologist wanted me to do at a location in California or Arizona. A newly approved (FDA) scan of this type, called FACBC, seems advanced. If my bone scan, MRI and other standard tests show no evidence of cancer spread, wouldn't it be smart to get a Choline scan first. I believe my current oncologist has done so with some of his patients at Cancer Care Alliance in Seattle. Thanks for any advice.

  • Hello Ronton,

    I'm no expert on any of this. You'll need to consult with someone who is. A call to one of the centers where they do these scans (only a few places are equipped for it) might enable you to find out if you are a good candidate for it and what is involved physically and financially. They may be unwilling to say anything definite about your case without actually examining you, but they might be able to answer general questions. You'll want to at least be able to tell them your PSA history, Gleason grade, and the results of any previous scans.

    My expectation is that, if you're planning to go on Lupron, it is necessary to do the the C-11 choline PET scan BEFORE you start the Lupron. The reason is that Lupron will shrink the tumors so that tumors that might have shown up on the C-11 choline PET scan before Lupron, may not show up because they're too small to see after Lupron.

    But, as I say, you need to talk to an expert about this.

    Best of luck.

    Alan

  • it makes sense that you find out what you have before you set your course to fix it. re:imaging

  • I didn't go through all of those gyrations you did, a quick history. 2001 Brachatherapy was unsuccessful; 9 months later I started intermittent 3H therapy (Lupron, Casodex, Avodart) 14 years later I was rejecting the Casodex. For the last 15 months (Lupron, Zytiga, Avodart)

    I wake up every day saying, "THANK YOU"..

    I too go the Bellevue Ustoo - Arnie

  • Do you adjust after 14 years. I do agree: Whatever works!

  • I was diagnosed with early stage prostate cancer way back in June, 2006. I was considering Brachytherapy as my first choice until my urologist at that time informed me that I that some three months of Lupron therapy was required before any form of radiation therapy would be done. I quickly backed off of any radiation therapy and then asked about cryrotherapy as an alternative. The doctor informed me that cryro was reserved for use as salvage treatment when radiation therapy has failed because radiation therapy made conventional surgery very difficult because the residual prostate was rendered into a physical condition of a caramel chew cube. I quickly opted for surgery. My urologist was still using the older perineal method, which, in skilled hands, had recovery characteristics of robotic surgery, with nerve sparing but without the heightened risk of incontinence. Other than remaining frequency of urination and mild erectile dis-function, both of which can be managed well with daily dose of Cialis, my PSA has been essentially unmeasurable to this day (just over 10 years!). I am looking forward to when Cialis goes off patert in 2017!

  • Been on Lupron since June 2016 (surgery April 2016, T3N1Mx, Ductal, 38 rounds of radiation ended in October. Side effects a pain in the a**, but not that bad. Gained about 15 lbs. In addition to hot flashes I get cold flashes. All that said, it is worth it as my PSA is undetectable (<0.1). Work out at the Y and try to ride 40 miles a week on a bike.

  • Thanks, Dr. Who. You are an inspiration.

  • In addition to Mayo, this hospital in Decatur IL offers the C-11 Choline PET/CT scan for detecting metastasized tumors present following primary or salvage treatments. See: itnonline.com/content/illin...

  • Does anyone know if Medicare will cover C-11 Choline PET/CT scan?

  • tjdillon - the link contains a triling period /that needs to be deleted to work

  • Sorry - it was the end of the sentence.

  • No problem. I posted that really for people who click the link. So that they know to remove the last dot and do it again.

  • That correction did the job!

  • Hiya,

    So sorry to hear what you are facing. I wanted to chime in because I would also suggest looking into chemo with your Lupron (Taxotere, I believe.) I think there was a fairly large study that completed a couple years ago that showed longer survivial with prophylactic chemo at the start of Lupron. I did that myself. My tumors shranks by 1/2. I have had undetectable PSA for two years so far. (My initial treatment was Cyberknife, but the cancer seems to have snuck out of the prostate before treatment, while it was still undetectable in scans, because it showed up in my lungs and bones with a rising PSA one year after treatement.)

    The chemo was not too bad... I took a few days off work after each session, sort of had flu-like symptoms. Between the chemo and Lupron, I seem to have less body hair now.

    I feel like I have been lucky with the side effects of Lurpon. I get hot flashes, but I consider them an inconvenience... I have gotten somewhat used to them. They can even feel a bit comical to me :) It is very infrequent that I break out into a sweat. Usually they just last a minute or two, and often nobody else really notices.

    I just had sex this morning! With no chemical assistance. But I am always unsure if I will be able to follow through. And it has been a long process for me to adjust to the complete lack of desire for sex. I just don't feel the need in my body AT ALL. So it has to be a conscious choice to be sexual, even though I don't 'feel like it.' However, once I start, I can still feel 'turned on' a bit. I rarely have orgasms anymore though... but that's possible too, usually with self-stimulation. Note: I was diagnosed 5 years ago at 42, I have been fit and active, so I think my relative youth has helped me weather these changes better.

    Also... when I started the Lupron, because of the loss of libido, I went for long periods without sex, and my penis sort of shrank and changed shape. Use it or lose it, I guess. I think a penis pump might have helped... that's the one thing nobody told me, but I wish they had.

    Hope this helps. Hope you do well.

  • I have been advised to use a penis pump, to take a "stimulant" daily and to keep myself in the game, no matter the lack of desire. Any comments about a penis pump and how well it works?

  • You know... it's hard for me to say what the full effects of the pump are, because I just got one on my own AFTER I noticed changes in my penis. But my intuition/common sense tells me that if I had been using one all along I would not have had the same changes to my penis. Honestly, I am definitely shorter, and it also curves a different direction now - downward instead of up! That maybe hurts my man-pride a bit, but my sweetheart wholeheartedly endorses that it's not the size of the boat, it's the motion in the ocean ;-) So my recommendation is definitely to keep things active. On days when I am able to have erections, I do not use the pump, because it's really just one more chore to add to my day. I have gone through my own waves of despair, hopelessness, and loss of self-esteem along the way. But there is no place for shame in this journey.

    I always start by playing around with myself. I think it's important to explore the brain-genital connection through all of this, be creative, playful, and exploratory. And I'd say, don't be afraid to get kinky, if there is something that might intrigue you!

    I do believe that we can really use this situation to learn much more about our sexuality than we would have otherwise (and our partners too)... and the mind-body connection. Imagination is a beautiful thing. Hopefully your partner will be willing to make the journey with you, in a patient and compassionate way. have also learned to enjoy sex without focusing on orgasm, or even on having an erection: some days they never come, and other days they just don't last as long as I would like. I have learned to completely let go of most of the disappointment I might feel as it arises. And what they say is true... our brain is our biggest sexual organ. This is all coming from somebody who still has some sexual function after two years on Lupron... I understand that not everybody is so 'lucky'. However, I am gaining confidence that there are options beyond erections. Good luck!

    (...also BTW... recently I have been reading "The Passionate Marriage" by David Snarch: a great book about relationships, and sex that looks beyond performance and focuses on play and intimacy. It's definitely more of a relationship book than a sex book, but I really like and have taken inspiration from it so far.)

  • Your reply is giving me plenty of opportunity for thought, particularly about intimacy and play versus orgasm as the only outcome. It does depend on one's partner. Mine is still grappling with my recurrence and new treatments. Definitely supportive but fearful, too. I did locate the penis pump I bought several years ago but only used briefly. Size is not important, but I do wonder if using the pump might help stave off the "shrinkage." But I am not--never have been--so attached to sex as the ultimate proof of manhood-ness. I'll let you know how it goes. Will definitely look for the Snarch book. Thanks.

  • Horemones are the teaditional next course in treatment. I was diagnosed in 2010, and had surgery and salvage radiation, with rising psa after each. My psa went from doubling every 9 months to jumping from 2.7 to 7.5 in 7 mos. earlier this year. My urologist wanted me to start horemone therapy, but suggested I get a c-11 PET scan with Dr. Kwan at the Mayo clinic. We found tumors and Dr. Kwan suggested chemo and lupron for treament. My urologist was lukewarm about getting chemo, thinking it is just used after horemone therapy fails, but agreed that if it would have a greater effect on my cancer, then why not? I just had chemo treatment #7 (of 9), Taxotere and lupron . Sure, chemo sucks, and so does hormones. But cancer sucks far worse. The lack of energy is miserable, and hot flashes and occasional pain are no fun, but I'm doing well enough. I didn't need that hair anyway and it will come back next year. It is going as well as I can hope. The good news: Both the tumors and my psa have disappeared! My point is, by now I see no reason not to treat aggressively, especially if there is a possibility of being cured, which I believe chemo gives me. In addition, after my chemo course, I probably won't need to stay on horemones as long as I would have, and I will only get them intermittently.

    Good luck!

  • Bill, I will discuss the combination of chemo and Lupron with Dr. Lin. I appreciate your thoughtful reply. Did you lose hair on your head or all over?

  • I didn't lose all my hair, but I lost hair everywhere. It started with my pubic hair, and them all my brown hairs and brown whiskers fell out, and half my brows and eyelashes. It made me look sort of mangy so I shave and keep my hair really short. My hair did stop falling out before halfway through treatment and it might even be growing back.

    You didn't mention your age. I am 50, diagnosed at 44. I was told that my age would probably help me tolerate chemo better than others, but hormones would be harder on me for the same reason. I have handled both pretty well, I guess, but I don't know what I compare to. And everybody is different. Thanks.

  • I've just started reading A Salamander's Tale by Paul Steinberg, MD. He has been living with prostate cancer for 30 years. The early chapters make me realize that I really have to be proactive in combating this disease. I forgot to mention in my original post that I was 54 at the time of diagnosis in 2005. There is life after prostate cancer. Yes!

  • Hormone therapy is your reasonable next step unless you first decide to go the route of one of the newer scans to see if you can find the metastatic sites. Some have suggest the Choline scan, but you also should know that there other PSMA based scans in clinical trials. Actually, as I write this response I am at the NCI where I had one of these scans today. Currently we do not know which of these new scans is more sensitive. You can find these trials on the clinical trial.gov web site.

    If you do go the direction of hormone therapy you should add to the Lupron another drug; Casodex (bicaludamide) for at least ten days prior to the first Lupron injection if not continually.

    Joel

  • I consulted with Dr Peter Grimm when I was diagnosed with pc in 1996 at 45 yrs old. I'm sorry to hear he passed away. Dr Grimm recommended surgery over the brachy therapy. PSA was 13 April 1996 and 27 at time of radical Nov 1996, Gleason 7. PSA never hit 0 so in 1999 with psa around 3, I had 7 weeks external rad. Within 2 years psa was approaching 3. My urologist Dr James Gottesman (retired) put me on intermittent Lupron therapy. I'm told hormone therapy works better for some men than others. If you choose Lupron I hope it works as well for you. I tried Casodex and other oral hormone therapy drugs over the years while on Lupron. They didn't seem to make much difference for me. I had radiation on my chest to stop breast growth which my urologist said was from the Casodex. I believe you will have to see what works for you. And yes, the side effects suck but worth it in my opinion. One I wasn't told about was increased appetite.

    Best wishes and I think all the replies you have received are very informative.

  • Yes, all the replies have been really helpful to me. Yours references radiation for breast enlargement. Is this fairly common? I will ask Dr. Lin about growth and Casodex. I am just overwhelmed by what is to come but all the thoughtful help from you and others on the site is really making a diffence in my attitude. Thanks, thanks

  • My Dr seemed to believe it was common. I'm sure Dr Lin will advise you if needed. You're welcome

  • A useful book on the management of ADT -- especially its side-effects :

    "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones" (2014) --

    . . . by Richard J. Wassersug PhD (and others)

    amazon.com/Androgen-Depriva...

    It should be given out by _every_ doc who uses ADT, to _every_ patient who gets it. Fat chance!

    . Charles

    PS - Dr. Wassersug is a friend of mine, I may be biased.

  • cpcohen, I couldn't agree more. I bought a copy immediately after being told ADT was in my future. I am re-reading it again, marking passages. Absolutely an essential--if not mandatory--reference material. It helps to defuse the anxiety!