Lupron

Greetings,

I am new to this forum and could use some advice. Thanks in advance for reading and for any information you might offer.

I have prostate cancer that has metastasized to my sternum. I have had radiation therapy to both the prostate and the sternum not to mention hormone therapy (Lupron injections). When we first found the cancer, about a year ago, my PSA level was 20.4 and Gleason rating of 3+4. My PSA is now < 0.1. Seems like the treatment is working, but at a pretty healthy cost.

I have been dealing with pretty extreme hot flashes, mood swings, night sweats, joint pain, nausea as well as other issues that I'm told are just part of the game.

My main concern is the joint pain. I understand that this is inevitable and I have been doing all that I've been instructed to minimize this including vitamins, drinking milk, exercise etc, but it seems to be getting worse lately. As I understand, this condition is not reversible.

I am told that I will be kept on Lupron for at least another year, so my question is, when I finally get to the point of "watchful waiting" should I prepare to be crippled? At what point should I concede that quality of life should be considered? I realize this is a personal choice, but it's a real concern for me right now and I need someone to give me some guidance.

Thanks

Thanks for the info Don as it does help.

I did speak with my oncologist about this just the other day and she confirmed that this is most likely a side affect of the Lupron injections.

On an unrelated note, does anyone else find it odd that "Lupron" shows as a typo on this forum?

Hi Freet, Very sorry about your difficulties. Don't know if it will help or not, but there are other drugs for hormone treatments. My Doc just started me on hormone treatments. I presumed that I was getting Lupron since I had heard so much about it, but just before administering the shot he tells me that it is Trelstar. There are also several other drugs that are used in first line hormonal therapy. Your doc may have considered these and rejected them for some reason, but it wouldn't hurt to ask. There are also drugs that are used as "second" line hormonal treatment. I know enough about this stuff to be dangerous, so you should look into it more and talk to your doc. Best of luck. BB

Please read my updated post about Megestrol. You don't have to suffer.
Roger

JohnT,

As I mentioned previously, my PSA is < (less than) 0.1, meaning that the test my oncologist uses does not register below that level. She also advised me that she is quite pleased with the results of my treatment and I should continue on this for at least another year. Because of this I am reasonably certain that I'm not going to go toes up for a while yet.

My primary concerns are the joint/bone related issues and of course my insomnia. They have prescribed me drugs to get me to sleep but so far none have been effective. This is not unusual for me though since I have always shown an extremely high tolerance to most any drug. My other issue, the bone thing, seems to be the one issue that I'm stuck with. I am an avid (read as pretty sucky, but I love the game none the less) golfer and I dread the day that I can no longer swing a club.

Since I have been on Lupron less than a year and am already experiencing fairly considerable pain I am concerned that after another year I might be too crippled to do much of anything. I truly dread that day.

Freet,
Your oncologist should be using the ultra sensitive psa test as it is the only way to see if the HT is really working. Also many patients after having their bone density monitored while on HT are given Phosomax or some other bone strengthner if the bone density is below normal.
If you are going to be on HT for a while it would be helpful if you learn as much about it and the side affects as you can as you have to be your own advocate and not rely on your doctor alone.
JT

zufus said...
Fosamax is good for bone issues and more potent and costly is zometa (IV).

You would be amazed at the difference in using DES, estradiol patches or emcyt over the Lupron, but your doc would make no money on those(sob-sob) and supposedly sees no value in them or supposedly doesn't know about them (ha) , pitful that is not mention to patients as a Real Choice.

Zufus,  Are you saying that these other drugs are more beneficial & lower in cost?

 

Ray

Yes, 'Heavyleaker' that is exactly what I am saying have done most all the 'normal' drugs(the uro's doc love selling-ADT drugs, and I did ADT3 combo for 2 yrs. initially) and personally know the differences as a user, not to mention I monitored psa's monthly and compared results, effects, and of course costs.  (it is a no brainer as far as I can ascertain)   Not to mention over 8 yrs.+ since diagnosed with highly ominious stats and gleasons scores(non-curative scenario) and total urinary blockage (2002). Probably should not even be here, originally my brothers doc said 2 yrs. to my brother based upon my stats.

The good news is I am still around to tell others what they might not know and to in effect 'question everything and all the time with PCa'.  Hey, Dr. Fred Lee has PCa....only drug he uses is emcyt   (no lupron, casodex etc.), and he invented cryo-freezing for PCa  (no dumby).  Dr. Premoli in Argentina uses estradiol patches on most of his patients with excellent results and no blood clots, of course whom can afford lupron or zoladex at  $10,000 a year or more??

Those are just a  couple of examples, there are more and different ones throughout the world and even some bizarre therapies...US drug companies have no monopoly on us...but they love to think so, for fun google lawsuits and lupron and zoladex  (Tap Pharma.. and Astrazeneca) they lost in court and paid out over $700 million (combined)..cost of doing business?    Also, interesting to know why and how they got caught and sued. (enjoy the readings)

Iam not saying don't use these drugs, but question everything and is it necessary to stay on these longer term??? Can you take a holiday or break (intermittent)?? You will find the answers may differ from the expert docs opinion that you may be seeing. This is a great cottage industry just as ABC News has aired a few years ago.

 

Freet:
The first few months of ADT I had shoulder joint pain, occasionally intense. This developed into a dull ache and eventually disappeared after some months. It has not recurred. I took no medication for the issue. I have read elsewhere that this is mentioned by a minority of ADT patients.

Greetings Freet:  your comment ' I have been checking into the alternatives and I do intend to speak with my oncologist about them. The only problem I have is the usual "You shouldn't listen to people on the internet because they don't know what they are talking about" response.'   I suppose many are to take that statement as true in all cases and gospel????

That is why I gave examples of Doctors doing or using the alternatives. Not to mention my own case of having done these different drugs and monitored results and have spoken with others that have done such as confirmation, along with confirmation from books, and other oncologists  (like: Strum, Scholz, Barken, Myers, Leibowitz, et al).  I doubt your oncologist is in the same league as those I just mentioned, so if these guys don't know what they are talking about, then who does?  I can trust that a doctor  like Dr. Fred Lee whom knows plenty about PCa is being irrational or dumb in using emcyt as his drug choice for control for many years now, too....amazingly not ever doing LHRH-Lupron and similar stuff....that speaks volumes by itself.  When you are talking to your oncologist whom problem will not endorse other drugs, ask him about the lawsuits on zoladex and lupron for bribing doctors and pushing the drug for marketing and see how he handles his reply....probably say something like this is done alot in the industry anyway(??). If he doesn't know of such lawsuits, he is either lying or much less informed than alot of PCa patients. Anyway there is no justification for what those companies did and got caught doing, just so your know your history and the glory behind those products.  You will probably be on them until you are totally refractive, then get ready for the doc to inform you of your chemo gig which is often the next treatment for patients.  You can read what other patients have done and be informed about the side effects, results and if there are benefits or set backs...this stuff is not necessarily pretty to think about. There are patients of some of those leading oncologists I mentioned whom have done various alternative protocols and with new found results going into further and further prolonged life, maybe no cures, but choices and longer or better living, maybe less side effects and more quality of life along the way. Best start looking at everything, you have nothing to lose by looking and getting information and may gain much.  Best to you and others in this jungle.

 

Post Edited (zufus) : 6/4/2010 6:17:12 AM (GMT-6)