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Medical Forum / Diseases and Disorders / Prostate Cancer / February 2004

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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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