Medical Forum / Diseases and Disorders / Prostate Cancer / February 2004
Lupron - Side effects - con't
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olfart - 21 Feb 2004 17:44 GMT Hi Group; I'm just past my 2nd month of the first 4 month Lupron shot. Up until about 2 weeks ago side effects were almost nil. The the hot flashes started with a vengence -sometimes 4-5 in a row and worse at night. Was also getting a little sore all over. Saw my uro who said that these were signs that the Lupron was finally taking effect. He gave me some Megace which has dealt with the excessive hot flashes and Flowmax-since I had started to get up to pee 5-6 times a night. The body and bone pain has continued to get worse. I have some arthritis and a lower back problem from an injury years ago which flares up about twice a year. Taking an anti-inflamatory for about 3 days usually takes care of this. My back had one of it's semi-annual fits about a week ago and I went to my GP for my Voltarin fix. Instead of 2-3 days I have been taking it for a week with no real relief yet. He commented that with the Lupron in my system that I would probably be a little more sensitive to my usual joint and back pain, but it should subside when I get off the Lupron. When I told him that I was scheduled to be on Lupron for at least a year(maybe more) he grinned and told me to "keep in touch" if the pain didn't get better. Has anyone else experienced joint or bone pain as a side effect - and what if anything was done about it. In my present condition I'm not sure I will be able to continue the hormones after this first shot has completed it's cycle in April. Any comments/suggestions would be welcome. Thanks, George Age - 68 8/12/02 - PSA 3.7 10/13/03 - PSA 4.69 11/11/03 - PSA 4.8 11/18/03 - Biopsy - 10 cores one core-25% of core-Gleason 4+4=8 all other cores benign tissue 12/10/03 - Consult - Oncologist 12/16/03 - Consult - Radiation Oncologist Treatment Plan - HT - started 12/17/03 - Eulixen & Lupron 2/10/04 - Started - Flowmax and Megastrol Radiation - IMRT to begin 3/14/04 - for 5 weeks Theraseed implant after Radiation completed
Leonard Evens - 21 Feb 2004 17:54 GMT > Hi Group; > I'm just past my 2nd month of the first 4 month Lupron shot. Up until about [quoted text clipped - 14 lines] > year(maybe more) he grinned and told me to "keep in touch" if the pain > didn't get better. I don't know if my experience is at all relevant, but even without Lupron I have serious back pain from time to time. I can avoid it by appropriate stretching exercises once the acute phase is over. But I need regular "training" sessions with a physical therapist to be sure I'm doing the exercises properly. Also, regular use of NSAIDs like naproxen help to keep it under control. During the acute phase I rely on Vicodin, one pill taken every six hours. The main side effect of that is constipation which is controlled by using stool softeners.
Good luck.
> Has anyone else experienced joint or bone pain as a side effect - and what > if anything was done about it. In my present condition I'm not sure I will [quoted text clipped - 14 lines] > Radiation - IMRT to begin 3/14/04 - for 5 weeks > Theraseed implant after Radiation completed olfart - 21 Feb 2004 20:11 GMT > > didn't get better. > [quoted text clipped - 8 lines] > > Good luck. Thanks Leonard I guess our back problems have some similarity. By doing excercises I usually keep the problem minimized and the occiasional flare-up is usually eliminated within 2-3 days with a NSAID called Voltaren. I have never had to use any other pain medication. Was just wondering if your condition seems more painful or is longer lasting while you used Lupron. Thanks
Leonard Evens - 21 Feb 2004 23:07 GMT >>>didn't get better. >> [quoted text clipped - 15 lines] > use any other pain medication. Was just wondering if your condition seems > more painful or is longer lasting while you used Lupron. Thanks Fortunately, I haven't had to use Lupron, at least so far.
Alan Meyer - 23 Feb 2004 02:47 GMT > Hi Group; > I'm just past my 2nd month of the first 4 month Lupron shot. Up until about [quoted text clipped - 18 lines] > be able to continue the hormones after this first shot has completed it's > cycle in April. Any comments/suggestions would be welcome. Thanks, George George,
I get back pain from time to time, but don't think it was worse from the Lupron I've taken. I'm just finishing my fourth month on Lupron and plan to get no more injections because of a different problem - elevated liver enzymes, that seem to be associated with the Lupron.
One thing you might do is get your testosterone level tested at the end of four months. The length of time that Lupron effects last varies a lot from individual to individual. At the end of four months you might find that it's still working strongly and you don't need more. Continuing hot flashes will tell you that too. I had mine tested two weeks ago and it was still at a minimum level, even though my dosage was theoretically about to run out. I've just reached the end of my four months and, judging from the hot flashes, the Lupron is still effective.
I suggest asking your doctor about that. If the testosterone happens to stay low for 6 months instead of four, he may decide that's enough to give you the main benefit that you need from it. Or he may recommend just one more injection, and not the two more that he had planned.
Alan
Alan Meyer - 23 Feb 2004 11:43 GMT > > Hi Group; > > I'm just past my 2nd month of the first 4 month Lupron shot. Up until [quoted text clipped - 7 lines] > to > > pee 5-6 times a night. The body and bone pain has continued to get worse. ...
George,
Another thing to ask your doctor about is switching to a different hormone suppression drug, other than Lupron. Before you do, you might want to do some research of your own in the Merck Manual, the Physicians Desk Reference or another drug guide. There is some online drug information at:
http://www.nlm.nih.gov/medlineplus/druginformation.html
The other hormone suppression drugs also have side effects. They could be better or worse than Lupron for you.
Alan
olfart - 23 Feb 2004 15:29 GMT > > Hi Group; > > I'm just past my 2nd month of the first 4 month Lupron shot. Up until [quoted text clipped - 52 lines] > > Alan Thanks Alan I will definitely have him check the liver enzymes anyway since mine have a habit of creeping up on their own from time to time probably due to a problem I had years ago. They son't get to a dangerous level and come back down on their own, but if the Lupron can cause them to rise it's worth checking out.
Bob - 24 Feb 2004 00:20 GMT Oh yes, the Hot Flashes. And joint pain. And muscle pains. And bone pain. The bone pain did not last all that long and was a really dull ache in the upper legs and mostly the pelvic bones. Felt really weird. The muscle pains came and went, primarily in the legs. The joint pain was mostly the hip joints and as this is still an on and off problem, maybe radiation was a factor? The Dr's do not know. Feels like fine sand in the joints, really burns, then it goes away only to come back a month/day/week later, then gone again. I also have lots of back pain due to injuries from lifting/twisting, but that's a different issue. . I was on Lupron for a year and the different pains would come and go. The HOT Flashes were just there, on and off, all day and all night. Really hard on the sleep. The fatigue I attributed to Lupron might have been from them, I do not know. The different pains would come and go, so were not all that hard to put up with. I have been off the Lupron for two years now, and still have very minor hot flashes with the right triggers. I will have to go back on the Lupron in another two months and hopefully it will be as effective against the cancer this time, as it was last time. And hopefully I will be able to have another two years off time. Sorry for being so wordy, but this is the short version!! Best of luck to you, it sounds like the effects are different for different guys, but you and I have had much the same effects and it does get better. I feel that all this beats the alternative to not going on Lupron.
> Hi Group; > I'm just past my 2nd month of the first 4 month Lupron shot. Up until about [quoted text clipped - 32 lines] > Radiation - IMRT to begin 3/14/04 - for 5 weeks > Theraseed implant after Radiation completed olfart - 24 Feb 2004 01:11 GMT > Oh yes, the Hot Flashes. And joint pain. And muscle pains. And bone pain. > The bone pain did not last all that long and was a really dull ache in the [quoted text clipped - 17 lines] > different guys, but you and I have had much the same effects and it does get > better. I feel that all this beats the alternative to not going on Lupron. The bone and joint pain has lessened in the last few days-so like you say it probably comes and goes. I've practically eliminated the hot flashes by taking a little Megace(Megestrol). Twice a day for about a week then a few once a day doses and none for about the last 3 days - and just a few mild flashes - nothing like what I was having. It's a low dose of an artificial female hormone and you might want to check with your DR when you go on the Lupron again. Thanks for the reply.
Jamie - 26 Feb 2004 20:24 GMT A side effect that I have and nobody seems to have mentioned it, are headaches. I get them every 2/3 days. My doc tells me they are migraineous although I have never suffered from migraine. Small amounts of alcohol can trigger them and two glasses of red wine will give me a severe headache and nausea for 24 hours. Has anyone had these effects and if so did they find a cure.
Jamie
olfart - 26 Feb 2004 21:34 GMT > A side effect that I have and nobody seems to have mentioned it, are > headaches. I get them every 2/3 days. My doc tells me they are migraineous [quoted text clipped - 4 lines] > > Jamie I don't drink, but seem to have more headaches than usual. Look at http://www.hypertext.org/ENGLISH/HB.html#sfx for alist of side effects - quite a long list - thank God we only get some and not all od them at once.
Heather - 26 Feb 2004 22:07 GMT I have had migraines for 20 years......so know what to ask you. Mine are usually weather-related. But.....red wine and chocolate are two prime causes. I get a mild headache from any kind of wine or spirits.
A migraine increases every sense 100 times. The cat walking across the room sounds like an elephant. Normal perfume or food smells are overwhelming (and usually cause the vomiting). You get an atrocious headache and then the nausea for about 6 hours......if you even blink an eyelash, you will throw up. You feel so awful that you would welcome a firing squad!! Or bang your head on the wall.
And that is how a bad migraine feels. You get disoriented as well. Fun, eh? I took meds to prevent them (propranolol) and now have lesser ones that I can control with cafergot.
Leave red wine alone!! And cheese.....and chocolate. Find the trigger, which is probably the Lupron.......but perhaps in tandem with any of the above. Ask your doctor what he recommends for migraines and then ask your pharmacist if it agrees with the Lupron. I trust my pharmacist over my doctor when it comes to cross-medication problems and side effects.
The 30 or so side effects you are seeing on the printed form are what I call the "cover your a.s" side effects. Boggles me how you can be either constipated or have diarrhea.......or sleepy or have insomnia. But the big drug companies cover all the bases now with medications.
I hope some small part of this helped. But I can't stress enough to leave the red wine alone.....that is a definite migraine trigger. As are cheddar cheese and chocolate.
HTH....Heather
> A side effect that I have and nobody seems to have mentioned it, are > headaches. I get them every 2/3 days. My doc tells me they are migraineous [quoted text clipped - 4 lines] > > Jamie olfart - 26 Feb 2004 22:19 GMT > <snip> > The 30 or so side effects you are seeing on the printed form are what I call > the "cover your a.s" side effects. Boggles me how you can be either > constipated or have diarrhea.......or sleepy or have insomnia. But the big > drug companies cover all the bases now with medications. The list is supposed to be a compilation of different side effects experienced by different Lupron users. The drug mfg info doesn't list even 1/4 of them, but I thought it would be helpful to post incase someone is suffering from something not listed by the mfg. In general you can't have both either-or, but one thing that bothered me for the first month or so was being very sleepy, but once I tried to go to sleep I stared at the ceiling all night. Go figure Age - 68 8/12/02 - PSA 3.7 10/13/03 - PSA 4.69 11/11/03 - PSA 4.8 11/18/03 - Biopsy - 10 cores one core-25% of core-Gleason 4+4=8 all other cores benign tissue 12/10/03 - Consult - Oncologist 12/16/03 - Consult - Radiation Oncologist Treatment Plan - HT - started 12/17/03 - Eulixen & Lupron 2/10/04 - Started - Flowmax and Megastrol Radiation - IMRT to begin 3/14/04 - for 5 weeks Theraseed implant after Radiation completed
Steve Kramer - 27 Feb 2004 17:57 GMT > The list is supposed to be a compilation of different side effects > experienced by different Lupron users. The drug mfg info doesn't list even [quoted text clipped - 3 lines] > being very sleepy, but once I tried to go to sleep I stared at the ceiling > all night. I feel cheated. I've been on the stuff since July and don't even get hot flashed anymore.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
Heather - 28 Feb 2004 01:06 GMT Not in touch with your 'feminine side' yet?? (VBG)
I have to be honest and say I never got hot flashes either. So if you were a woman, you would be one of the lucky ones......or maybe I have more testosterone than other women......lol.
Heather
> I feel cheated. I've been on the stuff since July and don't even get hot > flashed anymore. [quoted text clipped - 10 lines] > PSA .1 > Lupron 7/03, 8/03, 12/03 Steve Kramer - 28 Feb 2004 01:39 GMT I'd feel a lot luckier if I had hot flashes and a functioning Willie.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
> Not in touch with your 'feminine side' yet?? (VBG) > [quoted text clipped - 18 lines] > > PSA .1 > > Lupron 7/03, 8/03, 12/03 Lewis Hender - 24 Feb 2004 03:43 GMT I have been on Cyproterone pills since early Sept. of last year and my PSA has fallen from 56 to 1.8. In early October my left foot started to ache under the ball in the metatarsal area as well as my legs aching. My family Doc said I had flat feet and thats why they hurt. Well as 6 foot 5 inch man I have had flat feet for years. I have no feeling of livelyness, my belly and arm hair is half gone and I sweat like a pig, especially in bed. I was off the pills for a week while my Onc. made my treatment plan up and my sore foot went away. I was feeling peppy and my arms felt like I could tear small phone books. I am back on the pills for another month and I feel like a dish rag after working all day and tonight my feet are aching to beat the band. I will be a happy man when I stop the pills in March and perhaps the Radiaton treatments wont bother me too much. Lewis Hender
olfart - 24 Feb 2004 20:05 GMT > I have been on Cyproterone pills since early Sept. of last year and my > PSA has fallen from 56 to 1.8. In early October my left foot started to [quoted text clipped - 10 lines] > bother me too much. > Lewis Hender Hi Lewis; Sorry to hear that the hormone treatment is giving you such a rough time. My problems are not constant-they come and go, but can leave you feeling like crap for a few days at a time. Hopefully the Dr will take you off the pills when you start Radiation. I also begin Radiation IMRT - 25 doses - in March. However it looks like they will keep me on the Hormone therapy for up to a year. My Uro first said he would like to continue it for up to 3 years, but when I told him of the probs I was having he dropped it to a year. He did give me Megace which does a great job killing the hot flashes and sweats which were driving me nuts. Hand in there - we both know it's got to get better - so something to look forward to I guess. Luckily I am retired and don't have to go in to a job everyday like you do. Take Care Age - 68 8/12/02 - PSA 3.7 10/13/03 - PSA 4.69 11/11/03 - PSA 4.8 11/18/03 - Biopsy - 10 cores one core-25% of core-Gleason 4+4=8 all other cores benign tissue 12/10/03 - Consult - Oncologist 12/16/03 - Consult - Radiation Oncologist Treatment Plan - HT - started 12/17/03 - Eulixen & Lupron 2/10/04 - Started - Flowmax and Megastrol Radiation - IMRT to begin 3/14/04 - for 5 weeks Theraseed implant after Radiation completed
Alan Meyer - 25 Feb 2004 00:16 GMT > I have been on Cyproterone pills since early Sept. of last year and my > PSA has fallen from 56 to 1.8. In early October my left foot started to [quoted text clipped - 10 lines] > bother me too much. > Lewis Hender Lewis,
What kind of radiation will you be getting? Have they given you a bone scan to look for metastases? With a PSA of 56, that is something that would be suspected.
One approach to hormone therapy is called "intermittent hormone therapy", where they put you on the drugs, then off, wait for PSA to start to rise, then on again, and so on. There is some evidence that this makes the therapy easier to take without reducing life span.
You might want to ask your doctor about that.
Alan
Lewis Hender - 25 Feb 2004 05:26 GMT I have had a bone scan and was told it was completely clear my biopsy showed some cancer cells and the Gleason was 4=3. I had two male hormone shots to pep me up before I had my first PSA test and there is some argument about the high 56 because in a month my next PSA was 44 before I started HT and two months later the PSA was 4.4 Ive had several opinions on whether or not the testerone injections gave me a false reading. I will be starting 30 External Beam treatments on March 16 and stop taking the pills March 6th. One other thing Ive noticed is that if I go outside without lots of coats and sweaters I'll start to shiver and one night I shook so bad I had to use two hands to get the car key in to open the door. This has happened several times and it gave me cause to worry as I think I read somewhere that violent cold shivering could cause the body the shut down and cause a heart attack so if I go out I dress up like an Eskimo now. Seems like my body thermostat is too slow to adjust between sweating and freezing. Lewis
Alan Meyer - 27 Feb 2004 21:53 GMT > I have had a bone scan and was told it was completely clear my biopsy > showed some cancer cells and the Gleason was 4=3. I had two male hormone [quoted text clipped - 12 lines] > to adjust between sweating and freezing. > Lewis That freezing / sweating thing is a pain isn't it. I've had similar reactions. One minute I'm cold, the next I'm hot. When I'm driving my car, sometimes I've got the heater going full blast, then I turn it off and open the windows even though it's 30 degrees F. outside.
I have never heard of getting male hormone shots (testosterone?) in a person with PCa. The whole purpose of HT is to _reduce_ testosterone levels. I can't imagine why they'd want to increase them, unless that was before your first PSA and they had no idea that you might have cancer.
Having a clear bone scan is good news. It doesn't prove that the cancer has not spread, but it at least means that it hasn't spread and gotten big enough to be visible in the bones.
I suggest that you ask your doctor how many Grays of radiation he is prescribing. I read a study recently that said that men getting doses less than 72 Grays had significantly lower cure rates than men getting 72. Apparently 72 was the cut point for this. Above that didn't help much.
My radiation was given in 2 Gray daily doses. If you're getting the same, that's only 60 Grays. That's why I suggest checking.
The less radiation you get, the less the side effects. But if the whole point is to cure the cancer, it may be better to endure the side effects and go with the higher dose.
Good luck,
Alan
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