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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2005

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Strange SE from RT and ADT

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Stavros Moschos - 15 May 2005 23:05 GMT
With this posting I think I may be becoming the problem kid on the block
(except at 76 I don't qualify for that).  But I wonder if anyone has
experienced this:  Pains in the hands, especially the fingers, which close
up during sleep and are difficult to open.  It sounds like arthritis to me,
but at the bequest of my wife I mentioned it to my oncologist.  He said that
he hears this complaint about once a year.  When asked if would go away, he
said Yes, but rather sheepishly and offered no advice what to do.

I have had six months of ADT (and I think it started then in a mild form)
and have had 2 weeks of RT.  The ADT is over and the fingers are getting
worse.

Has anyone had this or heard of it?  Does anyone know what  to do about it?

Honestly, I'm not kidding.

Stavros

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A merry heart doeth good like medicine:  but a broken spirit drieth the
bones.
         (Proverbs, 17:22)

Olfart - 15 May 2005 23:51 GMT
> With this posting I think I may be becoming the problem kid on the block
> (except at 76 I don't qualify for that).  But I wonder if anyone has
[quoted text clipped - 13 lines]
>
> Stavros

If you already have some arthritis in your hands the ADT can make it
worse-at least in my case it did. All my joints ached, especially in the
knee and ankle of my right leg where there is arthritis caused by an injury
years ago. My URO says this is a result of low or no testosterone during
ADT. I have been off of ADT for about 4 months  and mt trestosterone level
is rising very slowly, but I am starting to feel a little better as far as
arthritic pain is concerned. NSAID's such as Celebrex (or in my case
Voltarin) did give some relief during ADT, but there are also side effects
to consider when using these meds. It should get better after you get off of
ADT.
George
Age - 70
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 MD
12/16/03 - Consult - Radiation Oncologist
Treatment Plan - Northeast Ga Cancer Center
HT - started 12/17/03 - Eulixen & Lupron (2nd 4 mo Lupron-4/26)
2/10/04 - Started - Flowmax and Megastrol
Radiation - IMRT to begin 3/30/04 - 42 treatments - Completed 6/8/04
No seeds due to Prostate problems
8/30/04 - 1 yr Viadur Implant instead of 4mo Lupron
1/14/05 - Removed implant - trying intermittant HT for a while.
4/4/05 - PSA <.01  Testosterone  9 (Nine)
Stavros Moschos - 16 May 2005 01:04 GMT
Thanks so much.  I thought I was a little crazy to post that.  I feel a lot
better knowing that, however slowly, it will get better later on.

>> With this posting I think I may be becoming the problem kid on the block
>> (except at 76 I don't qualify for that).  But I wonder if anyone has
[quoted text clipped - 49 lines]
> 1/14/05 - Removed implant - trying intermittant HT for a while.
> 4/4/05 - PSA <.01  Testosterone  9 (Nine)
I. P. Freely - 16 May 2005 02:12 GMT
A few people here and many in the literature have the same complaint,
especially if the already had some arthritis, with chemical (ADT) or
surgical castration. One or two here compared it to the pain of broken
bones. That SE may go away if and when your T returns to normal, which takes
longer and is less likely with increasing age. Best of luck with both the T
and the hands.

I.P.

"Stavros Moschos" <voyager100@sympatico.ca> wrote >
> Has anyone had this or heard of it?  Does anyone know what  to do about
> it?
Stavros Moschos - 16 May 2005 15:50 GMT
Thanks IP.  Actually my T is slowly returning.  For example, the flashes are
very mild now, short in duration, and much less frequent.
Stavros

>A few people here and many in the literature have the same complaint,
>especially if the already had some arthritis, with chemical (ADT) or
[quoted text clipped - 8 lines]
>> Has anyone had this or heard of it?  Does anyone know what  to do about
>> it?
I. P. Freely - 17 May 2005 22:09 GMT
> Thanks IP.  Actually my T is slowly returning.  For example, the flashes
> are very mild now, short in duration, and much less frequent.

It took my flashes 6-8 weeks to disappear after the hypothetical
"expiration" of my 28-day shot. Fortunately mine were quite moderate, merely
enough to cost me some sleep. Yours are heading in the right direction.

I.P.
Alan Meyer - 16 May 2005 20:42 GMT
> With this posting I think I may be becoming the problem kid on the block (except at 76 I
> don't qualify for that).  But I wonder if anyone has experienced this:  Pains in the
[quoted text clipped - 9 lines]
>
> Honestly, I'm not kidding.

Stavros,

Let me start with the bad news, but read on because there's good
news at the end.

I had the exact same symptoms after 4 months of Lupron.  The
symptoms were like rheumatoid arthritis.  I had symmetrical pain
in the hands, i.e., same pain in the same fingers in each hand.
My hands would be very stiff in the morning and painful all day.  I
had "trigger fingers", where some of the fingers would lock closed
and only open when I forced them open.

The problem started about six months after my last Lupron injection.
It got gradually worse and worse.  It was getting hard for me to type
on a keyboard or open a bottle cap.

I read the Lupron website and found that "joint pain" is a common
side effect.  Then I called the company and asked if Lupron could
cause rheumatoid arthritis.  They said "Yes", offering no other
advice.

I went to my primary care physician who put me on big doses
of different anti-inflammatory pills, but they did no good at all.  The
problem kept getting worse.

Now the good news.

I went to the library and got some books about arthritis.  One of
them said that exercise can both alleviate pain and prevent or
reduce progression of the problem.

I started exercising my hands.  They got better and better.

The best exercise I found was to use the hand squeezers that
you can buy in a sporting goods store.  The ones I use have
two handles with a steel loop spring connecting them.  You
squeeze them together.

I now do massive numbers of these exercises every day, up
to a thousand or more with each hand.  I do them in sets of
a hundred or so at a time, then put them down and later do more.
I keep a hand squeezer in my car and use it with one hand while
I drive with the other.  I keep a pair in the bathroom and use them
while I sit on the pot.

I won't say that the problem has completely disappeared, but for all
practical purposes it has.  I do the exercises throughout the day.
Most days I wake up with no pain or stiffness.  But I keep a
hand squeezer by the bed and, if I wake up and feel any stiffness
I do some exercises right in bed before going back to sleep.

I can't quit.  If I stop exercising within a few days I start to get
pain and stiffness.  But for the last eight months or so since I
began the exercises, I've kept the problem fully under control.

I recommend you start with light exercise.  Squeeze a rubber
ball at first.  Dip your hands in cold water first to relieve some
of the stiffness.  Don't exercise too hard, but do exercise as
frequently as you can.  Gradually build up.  Don't quit.

Hopefully, this will make a big difference.  Your hands will
get stronger and the pain and stiffness may be greatly
reduced or even disappear for significant periods.

Let us know if this helps.

   Alan
kh - 17 May 2005 11:26 GMT
> I had the exact same symptoms after 4 months of Lupron.  The
> symptoms were like rheumatoid arthritis.  I had symmetrical pain
[quoted text clipped - 6 lines]
> It got gradually worse and worse.  It was getting hard for me to type
> on a keyboard or open a bottle cap.

ah.   I have a "trigger finger" on my right hand.  It started about
6 months ago.  That's about near the end of the 2nd Lupron shot.

In the morning, it's hard to flip the finger open but by mid
morning, it starts working normally.

> I recommend you start with light exercise.  Squeeze a rubber
> ball at first.  Dip your hands in cold water first to relieve some
[quoted text clipped - 4 lines]
> get stronger and the pain and stiffness may be greatly
> reduced or even disappear for significant periods.

Thanks, this gives me some hope that I won't require hand surgery.
Alan Meyer - 17 May 2005 12:56 GMT
> ...
> Thanks, this gives me some hope that I won't require hand surgery.
> ...

It sounds like you're at the early stage of it - which is very good.

The particular exercises that I do don't really matter.  Lots of
different exercises seem to work.  The main thing is to do things
that provide strength and flexibility, and to do them frequently.

Some other exercises I've done that help are:

Simply clench and unclench my fists - lots of times.

Press the fingers of each hand against the fingers of the other hand.

Press each finger, one at a time, against the thumb.

Put each finger, one at a time, inside the thumb and press outward.

Don't overdo it and strain anything, but do lots and lots of repetitions.

I bet it would be possible to find a surgeon who would offer
you hand surgery for something like this, but I wonder if it would
really work.  If the problem is chemical/hormonal in origin, I
would think that surgery wouldn't address that.  I could well imagine
that surgery would unlock the fingers, but the pain and stiffness
would continue to develop.

Good luck and let us know if this helps.

   Alan
I. P. Freely - 17 May 2005 22:14 GMT
Geez, you guys are making me shudder. I already have OA in my knees, neck,
elbows, wrist, hand, and 20 finger/thumb joints.

I.P.
Stavros Moschos - 17 May 2005 22:45 GMT
That is obviously awful.

> Geez, you guys are making me shudder. I already have OA in my knees, neck,
> elbows, wrist, hand, and 20 finger/thumb joints.
>
> I.P.
I. P. Freely - 17 May 2005 23:23 GMT
"Stavros Moschos" <voyager100@sympatico.ca> wrote .
> That is obviously awful.
>
>> Geez, you guys are making me shudder. I already have OA in my knees,
>> neck, elbows, wrist, hand, and 20 finger/thumb joints.

Few of them are symptomatic -- mostly an occasional locked knuckle, a sore
neck, a random "electric shock" in a hand, etc. -- as long as I stay active.
I can't understand how I'd tolerate it if I took ADT and it decimated my
capacity for hard work and play AND exacerbated my OA. "Funny" side? Some of
the OA is spontaneous, not due to decades of physical abuse. My most painful
joint, for example, a three-bone hand joint which was causing shooting
"electrical" pains, occurs randomly in the broad population.  When cancers
preempted its surgery last fall to fuse it, it "got tired of waiting" and
fused itself. Can't beat THAT! Are ya listening, PC?

With any luck at all, both cancers, my OA, my sole remaining cochlea (which
would leave me stone deaf and almost completely imbalanced), my decades of
high sat fat intake, spinal stenosis from my broken back, and some
undiscovered new disease will all strike at once, so I don't have to waste
time fighting them independently . . . during windsurfing's off-season 30
years from now.

I.P.
kh - 18 May 2005 13:07 GMT
> I bet it would be possible to find a surgeon who would offer
> you hand surgery for something like this, but I wonder if it would
> really work.

About 4 years ago, I had surgery on my left hand, middle finger for
a "trigger finger".  

While the problem feels like the joint, it's actually the
tendon that runs across the palm and to the wrist.  

This "string" slides into a sheath and at the opening of the sheath,
a knob forms on the string and binds as it slides in.

The docs diagnose this gently pressing your palm about an inch below
the finger and feeling the nodule move as you flex.

Their solution is first to inject a steroid into your palm.  This
hurts like hell but for only a couple seconds.  It didn't help me.

The surgery is under a light anesthetic, they want you awake because
they need you to flex your finger before they close the incision.

I had that and ultimately it worked well.  Surprisingly they don't
cut the nodule off, they nick the sheath so that the opening is
larger.  Seems counter-intuitive to me but, as I said, it worked.

I'm guessing that the Lupron or something sets off inflamation and
that same problem is showing up in my right hand.  

I am flexing it as you suggested and I am hopeful that as the Lupron
fades that this problem will also fade.

Right now, it's not bad.  The hand doc did tell me that in extreme
cases, people can break their own bones trying to open and close
their fingers.

--
Beverley - 17 May 2005 19:25 GMT
Can you go to sleep at night holding a squishy ball or something? It might
help to keep you from clenching your hands. This can also be a stress thing
and the clenching would aggravate the arthritis.
Bev

> With this posting I think I may be becoming the problem kid on the block
> (except at 76 I don't qualify for that).  But I wonder if anyone has
[quoted text clipped - 13 lines]
>
> Stavros
Alan Meyer - 17 May 2005 22:19 GMT
> Can you go to sleep at night holding a squishy ball or
> something? It might help to keep you from clenching your
> hands. This can also be a stress thing and the clenching would
> aggravate the arthritis.
> Bev

That's interesting, I meant to mention something about that,
but in the other direction.  I found that if my fingers were
straight when I slept, I'd wake up with more stiffness and
trigger finger.  But if my hands were clenched all night, I'd
have less of that.

I never got a real diagnosis of my finger pain.  My primary
care physician wouldn't call it arthritis because he didn't
detect any swelling in the joints and he found no presence
of the rheumatoid factor that appears in the blood with
rheumatoid arthritis.  So he didn't know what my problem was.

I'm still guessing that what we get from Lupron is either
rheumatoid arthritis or something very like it, because of the
symmetry of the problem - same symptoms appearing at the same
time in the corresponding fingers in each hand.  I think that
would be unusual in osteoarthritis.  The lack of rheumatoid
factor in the blood may simply mean that it's an early stage.
The blood changes often only show up after you've had symptoms
for a couple of years.

In any case, the clenched vs. open hand question is one that
Stavros and others experiencing this problem should experiment
with.  If clenching the fist during sleep makes things better,
do it.  If it makes things worse, don't.

I thought about wearing gloves to sleep with my fingers clenched
in the palms where they'd be restricted, but it made it harder
to sleep.  So I just go with the exercises.

   Alan
I. P. Freely - 17 May 2005 23:33 GMT
"Alan Meyer" <ameyer2@yahoo.com> wrote in
> I found that if my fingers were
> straight when I slept, I'd wake up with more stiffness and
> trigger finger.  But if my hands were clenched all night, I'd
> have less of that.

Same observation here, very definitely. Not necessarily clenched, but
definitely not straight.
Seems that straight is not in our vocabulary any more for some of us.

> I'm still guessing that what we get from Lupron is either
> rheumatoid arthritis or something very like it, because of the
> symmetry of the problem - same symptoms appearing at the same
> time in the corresponding fingers in each hand.  I think that
> would be unusual in osteoarthritis.

IIRC, it was OA that ADT exacerbates. I've had obvious OA in every finger
joint for almost 20 years, but swelling in only one of them except for one
well-earned bout of exaggerated swelling in all eight primary knuckles.

> I thought about wearing gloves to sleep with my fingers clenched
> in the palms where they'd be restricted, but it made it harder
> to sleep.
I wear gloves often just to keep the industrial-strength hand lotion on my
hands and off the sheets (way to much water and wind exposure). I don't even
notice the cheap cotton gloves.

> So I just go with the exercises.

I notice no one's mentioned heat. My PTs have recommended hot paraffin baths
for hand OA.

I.P.
Stavros Moschos - 17 May 2005 22:43 GMT
You don't know what kind of sleeper I am!  But Alan Meyer has given some
good advice about a little device with which you clench and unclench your
hands and we are going to get it. In the meantime I am just wiggling my
fingers a lot all day and it helps.  Above all, I am glad to learn that I am
not going crazy.  Am I ever glad I posted my query.  No, above all is that I
found this ng.  Thanks, Bev

> Can you go to sleep at night holding a squishy ball or something? It might
> help to keep you from clenching your hands. This can also be a stress
[quoted text clipped - 24 lines]
>>
>> Stavros
Steve Kramer - 18 May 2005 00:05 GMT
Well, if your doctor didn't have an opinion, I'll give it a shot.  I think I
would increase my potassium level.  If your muscles causing your hands to
clench like a charlie-horse in the leg, then potassium might be the ticket.

I think you ought to exercise the fingers, too.  I'd think twice a day.  At
night to make the muscles tired and in the morning to stretch them out.  I'm
no trainer either, but sticking your hands into a pot of dry rice and moving
your fingers, clenching your fists, opening your fists, all against the
resistance of the rice.... might help.

Signature

PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05
PSA  .07 .05 .06 .05
non Illegitimi carborundum

> With this posting I think I may be becoming the problem kid on the block
> (except at 76 I don't qualify for that).  But I wonder if anyone has
[quoted text clipped - 13 lines]
>
> Stavros
Heather - 18 May 2005 03:52 GMT
Good point, Steve.  I get severe leg cramping if I take a diuretic and I
will bet some of the ng are on them.  Often used along with heart meds.
Eating just one banana will help balance the potassium, for instance.  I
took potassium pills instead.

An old folk remedy that my Dad told me about for arthritis is alternating
hot and cold water.  I have it badly in my hands (knuckles mainly) in the
Winter and forget to do this.  Fill two containers such as dishpans or sinks
with hot and cold water and alternate between the two for at least 5 minutes
in each.

Then there are all sorts of home & health remedies that I saw on Larry King
one night with osteoarthritis sufferers (mostly dancers & actors)......hot
showers was at the top of the list.  But MSM, chondroitin and glucosamine
were popular as well.

But something I tried this year worked beautifully and that is *capsaicin*
cream (hot chili peppers).  I got a really strong cream and it hurt a bit at
first, but boy, did it take the pain away!!

However, even tho I had washed my hands, I forgot and touched my mouth and
eyes and paid for that one for a few hours!!  I would only use it again if I
immediately put rubber or cotton gloves on.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstra
ct&list_uids=1954640


That is just one I found in Google.  Seems to work according to most of the
sites.....worth a try, I think.

Heather
> Well, if your doctor didn't have an opinion, I'll give it a shot.  I think I
> would increase my potassium level.  If your muscles causing your hands to
[quoted text clipped - 27 lines]
> >
> > Stavros
 
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