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Joint and muscle pain, 1 year on Lupron.
  1. #1
    kh Guest

    Default Joint and muscle pain, 1 year on Lupron.

    I've been on Lupron for about a year. About a month ago, my back
    started hurting. Just over a year ago, I had a compression fracture
    of a vertebra.

    A bone scan 2 months ago, lit up spots in my back and hip, and
    possibly my shoulder.

    In the last few weeks, I've had incredible pain in my back and hip.
    I've had docs push on my spine and ask if it hurts. It doesn't.

    What hurts is when I bend or flex in very specific ways. I did some
    web searching and found women complaining about joint, hip, and muscle
    pain while on Lupron.

    My pain seems to be specific muscles or tendons or maybe something in
    the joints. I am definitely weaker and have lost muscle mass in the
    last year.

    I'm taking OTC pain meds, which help but the pain is there when I
    move.

    Anyone have anything like this?

    -kh

  2. #2
    BH Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    On Thu, 21 Feb 2008 06:36:33 -0800 (PST), kh <[email protected]> wrote:

    I had a similar experience when I was taking Casodex. It was
    difficult to determine if the pains were in the muscles, tendons,
    joints, or other. But the pain was definitely there. The worst place
    for my pain was my right shoulder. Other joint areas were affected to
    varying degrees. OTC drugs didn't seem to help me much. I tried
    aspirin, Advil, and Tylenol. After I stopped taking Casodex, the pain
    subsided over a period of a few months and is now gone.

    I'm sorry I have no suggestions to help. But, I certainly sympathize
    and wish you well.

    Burney


    >My pain seems to be specific muscles or tendons or maybe something in
    >the joints. I am definitely weaker and have lost muscle mass in the
    >last year.
    >
    >I'm taking OTC pain meds, which help but the pain is there when I
    >move.
    >
    >Anyone have anything like this?
    >
    >-kh

    RP in 1995 (age 52)
    RT in 2000
    ADT (Casodex) 10/06 - 8/07
    Latest PSA - 0.18

    burney dot huff at mindspring dot com

  3. #3
    I.P. Freely Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    kh wrote:
    > I've been on Lupron for about a year.
    > In the last few weeks, I've had incredible pain in my back and hip.
    > I've had docs push on my spine and ask if it hurts. It doesn't.
    >
    > What hurts is when I bend or flex in very specific ways. I did some
    > web searching and found women complaining about joint, hip, and muscle
    > pain while on Lupron.
    >
    > My pain seems to be specific muscles or tendons or maybe something in
    > the joints. I am definitely weaker and have lost muscle mass in the
    > last year.
    >
    > I'm taking OTC pain meds, which help but the pain is there when I
    > move.
    >
    > Anyone have anything like this?


    Yeah. It's known to exacerbate any existing arthritis even if it doesn't
    create its own pain. Snipped from my HT SE Poll Results of early 2005:

    “NoSpam”:
    Shooting pains in some toe joints and right fingers.

    Chuck:
    Extreme, crushing, hammering bone and often-crippling joint pain; often
    feeling like broken bones. Hot sweats. And that’s months after he gave
    up Lupron because of its SEs.

    George:
    joint and fracture-level bone pain

    I.P.

  4. #4
    kh Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    Update.

    I had an MRI, turns out that tumors are pressing on nerves in my
    spine.

    I'll be going in for palliative radiation next week, 15 days of
    treatment.

    In the meanwhile I'm taking percocet and decadron. The Dec, a
    steroid, is supposed to reduce the swelling and relieve the pressure
    on the nerves.

    The expectation is that the radiation will beat this thing back. I
    sure hope so.

    -kh got a lot of fooling around yet to do.

  5. #5
    Steve Kramer Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    "kh" <[email protected]> wrote in message
    news:[email protected]...
    > Update.
    >
    > I had an MRI, turns out that tumors are pressing on nerves in my
    > spine.
    >
    > I'll be going in for palliative radiation next week, 15 days of
    > treatment.
    >
    > In the meanwhile I'm taking percocet and decadron. The Dec, a
    > steroid, is supposed to reduce the swelling and relieve the pressure
    > on the nerves.
    >
    > The expectation is that the radiation will beat this thing back. I
    > sure hope so.
    >
    > -kh got a lot of fooling around yet to do.


    Thanks for the report, kh.

    My back is terrible right now. I'm on steroids and Darvon. I've fairly
    certain it's just a re-rupture of my disk, but I spend a lot of time
    thinking about how this is going to be how it feels when it goes to my
    vertebrae.




    --
    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 PSAD 0.19 years
    EBRT 05-07/2002 @ 47
    PSA .34 .22 .15 .21 .32 PSAD .056 years
    Lupron 07/03 (1 mo) 8/03 and every 4 months there after
    PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
    Casodex added daily 07/06
    PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08
    Non Illegitimi Carborundum



  6. #6
    kh Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    On Feb 22, 4:51 pm, "Steve Kramer" <skra...@cinci.rr.com> wrote:

    > My back is terrible right now. I'm on steroids and Darvon. I've fairly
    > certain it's just a re-rupture of my disk, but I spend a lot of time
    > thinking about how this is going to be how it feels when it goes to my
    > vertebrae.


    I got my MRI images. While I can't make any sense out of them, they
    are crisp and clear and all the docs were able to spot the problem.

    I got an appointment on the MRI the next day, a call from the
    Radiation Oncologist a few hours later. He asked if I needed to start
    treatment that afternoon, or would Monday be OK.

    For us, its a matter of keeping the docs in the loop and working with
    them. I am extremely aggressive on handing problems with their
    billing contractor and my insurance.

    I dropped an email and a fax to the medical oncologist at JHU and
    heard back from him in 15 minutes. "Do the radiation, soon,
    immediately. We will put you in the taxotere/IL-6 Antigen trial when
    that is over."

    This pain is the worse I've ever felt and percocet 10/325 does not
    handle it 100%.

    If bone mets is anything like this, I don't want to experience it.
    What I have are tumors pressing directly on nerves.

    All 3 docs did the pressing of their fingertips on my spine and
    walking up and down, "Does this hurt?" The medical oncologist was
    gentle, the radiation oncologist had a firm touch.

    My primary care doc, who is locally famous as a perfectionist
    Internist, pressed his knuckles into my spine, hard. I did not feel
    any pain.

    Then he called the MRI center and set me up with their next available
    slot.

    We gotta keep after this.

    -kh

  7. #7
    kh Guest

    Default Re: Joint and muscle pain, 18 hour update

    The radiation oncologist prescribed decadron 4 mg 3 times a day, to
    reduce swelling and alleviate the pain.

    It's helping. Seems to work better than the percocet. Which makes
    sense as it's attacking the mechanism, pressure on the nerves, not
    blocking the pain.

    I cut back on the percocet 10/325 every 4 hours to a half tab every 8
    hours. The full 10/325 was giving me a buzz and didn't do that much
    for the pain.

    The medical oncologist sent another email stating the he concurs with
    the treatment plan.

    I think these are not "bone mets pain" as we generally understand
    them. That's where the bone itself hurts.

    This pain is the mets on the inside of my spine or adjacent to nerves
    that go to my legs pressing against each other.

    This morning, I am feeling much less pain and seem a little stronger
    too. Some of that might be the decadron pumping me up.

    -kh







  8. #8
    Alan Meyer Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    I have read about a new type of radiotherapy given for bone pain that
    works on a different principle. Instead of radiating the bones with
    an external beam x-ray generator, they inject a radioactive isotope
    into the bloodstream bound to some molecule that is taken up by bone
    metastases. The idea is that the isotopes are drawn directly into the
    tumors in the bones, where they attack them, with relatively little
    effect on other parts of the body.

    I believe that the technique is experimental. I'm not sure it's
    better than the traditional method. It might be worse. But if you're
    going to see a radiation oncologist who does palliative treatment of
    bone pain, it might be worth asking him if he's heard of it and what
    he thinks of it.

    Incidentally, radiation of bones to reduce pain is considered
    "palliative" treatment, i.e., treatment intended to make life better
    rather than longer. However, I think there may be some evidence that
    it actually can prolong life too. It is, after all, killing tumor
    cells. I would guess that whether and how much it might prolong life
    probably varies from person to person.

    Finally, it is my understanding that there are many different kinds of
    pain treatment and each different kind of pain responds best to a
    particular kind of treatment. If the treatments you get don't control
    the pain for you, ask about seeing a pain specialist. It's possible
    that there other drugs that are more effective for your specific
    problem than what you're getting.

    Best of luck with this KH.

    Alan

  9. #9
    Lud Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    On Feb 21, 9:36 am, kh <tch...@yahoo.com> wrote:
    > I've been on Lupron for about a year. About a month ago, my back
    > started hurting. Just over a year ago, I had a compression fracture
    > of a vertebra.
    >
    > A bone scan 2 months ago, lit up spots in my back and hip, and
    > possibly my shoulder.
    >
    > In the last few weeks, I've had incredible pain in my back and hip.
    > I've had docs push on my spine and ask if it hurts. It doesn't.
    >
    > What hurts is when I bend or flex in very specific ways. I did some
    > web searching and found women complaining about joint, hip, and muscle
    > pain while on Lupron.
    >
    > My pain seems to be specific muscles or tendons or maybe something in
    > the joints. I am definitely weaker and have lost muscle mass in the
    > last year.
    >
    > I'm taking OTC pain meds, which help but the pain is there when I
    > move.
    >
    > Anyone have anything like this?
    >
    > -kh


    I started having back pain 2 months ago - on ADT for 4 years now. What
    I found helps me is a heating pad and doing the Robin McKenzie back
    exercises as prescribed by my physio - looked up http://www.mckenziemdt.org/index_us.cfm

    Hope this helps
    Lud

  10. #10
    kh Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    On Feb 23, 8:54 pm, Lud <Ludwi...@gmail.com> wrote:

    >
    > I started having back pain 2 months ago - on ADT for 4 years now. What
    > I found helps me is a heating pad and doing the Robin McKenzie back
    > exercises as prescribed by my physio - looked uphttp://www.mckenziemdt.org/index_us.cfm
    >
    > Hope this helps


    scares me a little.

    When my back pain started, I got good relief from a heating pad, hot
    soaks in the tub, or using my show-massage with hot water. Aleve
    helped at first, then worked less.

    That was treating the symptom.

    I used some -cough-cough- left over percocet, that helped but then
    worked less. These were 5/235's.

    I got a script for 10/235's and they work a lot better. Decadron, a
    powerful steroid, has greatly reduced the pain. I've been taking the
    percocet 10/235 and the Decadron for 32 hours and feel better than I
    have in a month.

    My problem was a tumor growing against nerves in my spine. I don't
    have the details as the radiation oncologist has not yet briefed me.
    That'll happen towards the end of next week.

    The docs could not figure it out until they got me on the MRI. The
    MRI session was 2 studies with and without enhancement.

    -kh will be around for a while, even went out for dinner to celebrate.

  11. #11
    Steve Kramer Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    "kh" <[email protected]> wrote in message
    news:3dd4a982-a1ce-4346-94e7-a303a3fe91ef@34g2000hsz.googlegroups.c[email protected]..

    >
    > When my back pain started, I got good relief from a heating pad, hot
    > soaks in the tub, or using my show-massage with hot water. Aleve
    > helped at first, then worked less.
    >
    > That was treating the symptom.
    >
    > I used some -cough-cough- left over percocet, that helped but then
    > worked less. These were 5/235's.


    I don't have mets, but the rupture to the disk dies the same thing to my
    nerves. Aleve did not work. Naproxen at prescription strength didn't work.
    I'm taking Darvon (hydrocodone) right now and, while I keep taking it just
    in case, I don't feel as if it did anything. My back is getting better,
    thanks to a sedentary life and walking when I get a chance (snow on the
    ground for a week). I hardly ever to narcotics; maybe three times in my
    life. As such, when I do use them, they are very effective. If I went to
    Percodan (oxycodone), the pain would leave, but I'd sleep through each day.




  12. #12
    Alan Meyer Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    On Feb 24, 5:44 am, kh <tch...@yahoo.com> wrote:
    > ...
    > -kh will be around for a while, even went out for dinner to celebrate.


    Good for you kh!

    We ain't dead until we're dead. In the meantime, we need to
    really live!

    Alan

  13. #13
    kh Guest

    Default Re: Joint and muscle pain, history and 3.5 day update.

    On Feb 23, 3:05 pm, Alan Meyer <amey...@yahoo.com> wrote:

    > I have read about a new type of radiotherapy given for bone pain that
    > works on a different principle. Instead of radiating the bones with
    > an external beam x-ray generator, they inject a radioactive isotope
    > into the bloodstream bound to some molecule that is taken up by bone
    > metastases.

    ....
    > It is, after all, killing tumor
    > cells. I would guess that whether and how much it might prolong life
    > probably varies from person to person.

    ....
    > If the treatments you get don't control
    > the pain for you, ask about seeing a pain specialist.


    Thanks Alan,

    I've been on the full 10/235 percocet for 3.5 days and on the 4 mg
    decadron for 2.5 days. I've tapered off the percocet from every 4
    hours to every 12. I'm taking the decadron 3x day as ordered.

    The back pain is tolerable today. It almost feels like that time in
    college, the day after, er, ah. with that blonde graduate student,
    she'd be, what, 70 now?

    As the weekend went on, I felt better and stronger but given the words
    from the doc, this thing almost got me again.

    The radioisotope targeting bone mets makes perfect sense, it's like a
    bone scan with a "surprise" package. It's "Federal Express" with a
    package bomb for Mr. PCa! Sign here, -ka-boom-.

    I'm guessing that it's for guys with a little more time.

    The docs didn't spell it out but this might be close to causing
    permanent nerve damage and paralysis.

    Stats, stats, patient history. Learn from my adventure.

    Summer 2006 - The first scan that showed the shadow of the beast was a
    "lets do a calcium scan of your heart". This was months before the
    symptoms and with a low PSA. "Your heart looks great but there's
    something off the edge that I don't like."

    The next sighting was December 2006. My back was bothering me and a
    bone scan showed a lower back hot-spot. They put me on the MRI and
    it revealed a "slight compressive fracture of a vertebra, right at the
    hot-spot. "Great News! It must have happened when you picked up the
    150 pound machine." My PSA had been climbing but was still in the
    range of "we've seen higher that resolved."

    But the MRI shows something in your chest. Better check it out,
    sooner than later.

    January 2007, between the flu and asthma, I was having breathing
    problems, Symptoms: going into oxygen debt walking a couple blocks
    and a whistle in my throat.

    February 2007, symptoms kept getting worse. A pulmonary doc gave me a
    steriod inhaler and sent me to a cardiac surgeon for a biopsy, "Cat
    scan shows something there".

    Pathology report said it's <word for gland derived cancer> which is
    great news, it's not lung cancer. It's only a PCa tumor.

    A PCa tumor had taken up residence in my chest and was choking off my
    windpipe and vena cava (?). PSA 60+.

    Casodex and 1 shot of Lupron, a few weeks and I'm breathing better.
    Another month, the tumor is shrinking. Steve K has my PSA graphs.

    I felt fine all spring, summer, into the fall 2007.

    Last November-December 2007, my PSA starts climbing again. This is a
    new trick from PCa, the hormone resistant, spine loving variety. My
    back started bothering me about December, maybe. It came on
    gradually. Like Steve K, I have had back problems for a while. It's
    hard to tell if it's new or just a geezer with the usual aches and
    pains.

    Last week's MRI showed the full frontal face of the beast. "I see you
    now."

    February 25, 2008, Inova-Cancer-Center is cranking up the juice to
    their Varian. This is 21st Century, high energy medicine.

    JHU concurs, give it the death-ray then we'll come in with our
    taxotere and IL-6 Antigen trial and mop up the debris.

    That's the status to date. I hope this report brings perspective.

    My interpretation

    The casodex-Lupron bought me a year, not 3.5 months. Not bad for a
    few white pills and a horse-shot in the butt. That was a productive,
    relatively healthy year.

    I have a particularly aggressive, mean PCa; a post-radical biopsy may
    have revealed that but by going rad; I didn't get that benefit/heads
    up.

    On the other hand, very probably, surgery would have failed too.

    No way that salvage rad would have been a backup treatment for me, not
    after the "perfect" seeding and 15 days of IMRT.

    What I "won" was no pads and no drips, and if I weren't on Lupron now,
    a little Vitamin-V would have me good-to-go. Not great-to-go but OK
    for my age.


    I'm turning over my personal and business responsibilities to my
    partners. I've shifted from company president to "employee" and
    reduced my salary. That frees up assets for the company to take some
    risks.

    I have two goals, one is to make the others responsible for
    decisions. This is their time to make mistakes while I can give them
    gentle guidance.

    The other is to free up my time for some fun activities. I'm
    guessing worse case, I have 4 years. I have a $50 bottle of wine on
    my basement shelf (along with mostly Two Buck Chuck). I can cram 20
    years of living into 4.

    Best case, PROVENGE, GVAX, something will come along, go right to the
    heart of PCa and clean it right out.

    In the interim, I have many, many fun things ahead.

    -KH









  14. #14
    rosbif Guest

    Default Re: Joint and muscle pain, history and 3.5 day update.

    On Mon, 25 Feb 2008 03:55:41 -0800 (PST), kh <[email protected]> wrote:


    >The other is to free up my time for some fun activities. I'm
    >guessing worse case, I have 4 years. I have a $50 bottle of wine on
    >my basement shelf (along with mostly Two Buck Chuck). I can cram 20
    >years of living into 4.
    >
    >Best case, PROVENGE, GVAX, something will come along, go right to the
    >heart of PCa and clean it right out.
    >
    >In the interim, I have many, many fun things ahead.



    An inspiring post, kh. I'll have a sip with you - the Lidl stuff is
    only 1 euro a bottle but ok once the palate has numbed...

    all the very best to you, fingers crossed, as usual...r

  15. #15
    Lud Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    On Feb 24, 12:44 am, kh <tch...@yahoo.com> wrote:
    > On Feb 23, 8:54 pm, Lud <Ludwi...@gmail.com> wrote:
    >
    >
    >
    > > I started having back pain 2 months ago - on ADT for 4 years now. What
    > > I found helps me is a heating pad and doing the Robin McKenzie back
    > > exercises as prescribed by my physio - looked uphttp://www.mckenziemdt.org/index_us.cfm

    >
    > > Hope this helps

    >
    > scares me a little.
    >
    > When my back pain started, I got good relief from a heating pad, hot
    > soaks in the tub, or using my show-massage with hot water. Aleve
    > helped at first, then worked less.
    >
    > That was treating the symptom.
    >
    > I used some -cough-cough- left over percocet, that helped but then
    > worked less. These were 5/235's.
    >
    > I got a script for 10/235's and they work a lot better. Decadron, a
    > powerful steroid, has greatly reduced the pain. I've been taking the
    > percocet 10/235 and the Decadron for 32 hours and feel better than I
    > have in a month.
    >
    > My problem was a tumor growing against nerves in my spine. I don't
    > have the details as the radiation oncologist has not yet briefed me.
    > That'll happen towards the end of next week.
    >
    > The docs could not figure it out until they got me on the MRI. The
    > MRI session was 2 studies with and without enhancement.
    >
    > -kh will be around for a while, even went out for dinner to celebrate.


    Sorry to hear about the mets- that is a bummer.

    Have you hit the "renegade cells" with everything possible? - you
    write about Lupron and Casodex as far as I can find.

    Here is my checklist - these are secondary hormonal therapies which
    work for some but not all of us.

    1 - Estradiol patches - 6 to 10 at one time

    2 - Ketoconazole - starting dose of 200 mg TID (3 x day) going up to
    400 mg TID with hydrocortisone

    3 - Anandron - an alternative to Casodex anti-androgen suppressor

    4 - DES 1 mg TID with coumadin and aspirin

    AND to fight the cancer cells getting to the bones - Zometa infusion?

    After all the above has failed then there is Taxotere - q21 or weekly

    Have you tried all these options?

    Lud

  16. #16
    kh Guest

    Default Re: Joint and muscle pain, 1 year on Lupron.

    On Feb 25, 7:34 pm, Lud <Ludwi...@gmail.com> wrote:
    > On Feb 24, 12:44 am, kh <tch...@yahoo.com> wrote:
    >
    >
    >
    > > On Feb 23, 8:54 pm, Lud <Ludwi...@gmail.com> wrote:

    >
    > > > I started having back pain 2 months ago - on ADT for 4 years now. What
    > > > I found helps me is a heating pad and doing the Robin McKenzie back
    > > > exercises as prescribed by my physio - looked uphttp://www.mckenziemdt.org/index_us.cfm

    >
    > > > Hope this helps

    >
    > > scares me a little.

    >
    > > When my back pain started, I got good relief from a heating pad, hot
    > > soaks in the tub, or using my show-massage with hot water. Aleve
    > > helped at first, then worked less.

    >
    > > That was treating the symptom.

    >
    > > I used some -cough-cough- left over percocet, that helped but then
    > > worked less. These were 5/235's.

    >
    > > I got a script for 10/235's and they work a lot better. Decadron, a
    > > powerful steroid, has greatly reduced the pain. I've been taking the
    > > percocet 10/235 and the Decadron for 32 hours and feel better than I
    > > have in a month.

    >
    > > My problem was a tumor growing against nerves in my spine. I don't
    > > have the details as the radiation oncologist has not yet briefed me.
    > > That'll happen towards the end of next week.

    >
    > > The docs could not figure it out until they got me on the MRI. The
    > > MRI session was 2 studies with and without enhancement.

    >
    > > -kh will be around for a while, even went out for dinner to celebrate.

    >
    > Sorry to hear about the mets- that is a bummer.
    >
    > Have you hit the "renegade cells" with everything possible? - you
    > write about Lupron and Casodex as far as I can find.
    >
    > Here is my checklist - these are secondary hormonal therapies which
    > work for some but not all of us.
    >
    > 1 - Estradiol patches - 6 to 10 at one time
    >
    > 2 - Ketoconazole - starting dose of 200 mg TID (3 x day) going up to
    > 400 mg TID with hydrocortisone
    >
    > 3 - Anandron - an alternative to Casodex anti-androgen suppressor
    >
    > 4 - DES 1 mg TID with coumadin and aspirin
    >
    > AND to fight the cancer cells getting to the bones - Zometa infusion?
    >
    > After all the above has failed then there is Taxotere - q21 or weekly
    >
    > Have you tried all these options?
    >
    > Lud


    Been on Lupron for a year and Casodex for a few months, on then off,
    then on, now off again.

    Taxotere with an IL-6 antigen is next but they haven't started me on
    it yet. The bone mets was an emergency. Came on fast as detailed
    elsewhere.

    I'm getting 14 days of external radiation treatment from Inova's
    Trilogy. Added in are decadron and fosamax. The decadron has some
    "get outa here cancer" effect and the fosamax should help rebuild the
    bone. Inova is confident that they will beat the bone mets back and
    high probability that they will not recur in the same area.

    Doing pretty good but beat, turning in.

    -KH


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