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Thread: Bone Mets--Who has them?

  1. #1
    Senior User
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    Unhappy Bone Mets--Who has them?

    After extensive radiation of a prostate fossa-derived tumor surrounding my bladder (Dec/Jan 2012), my latest PSA reading was (to me at least) alarmingly high. I asked for a bone scan (last bone scan, six months previously, was clear). Results: Riddled with bone mets. Two weeks before, when I went in for my bone scan, I had had pain in my ribs when I moved, and I was thinking I strained my muscles somehow, and just relaxed for two weeks to "heal". Didn't work. Now I know why. I have these strong "ache" pains, sometimes when I move, sometimes it just up and slaps me when I am NOT moving. I can hardly wipe my _$$ without excruciating pain.

    I'm seeing my oncologist this Thursday for strategizing, and am ASSUMING chemo is next. Though I have been "Provenged", either it didn't take, or my aggressive Gleason 9 cancer is running away faster than the Provenge can keep up.

    What is YOUR experience with bone mets?
    Last edited by sequoiaranger; 06-23-2012 at 03:46 PM.
    T-3, Gleason 9+
    RRP 2-26-07
    Was using Lupron HDT--
    Successful for four years,
    Not working anymore!
    Fast-rising PSA 6/11
    Provenge started 8/11
    PCa invasion of bladder 9/11
    Fossa lesion discovered 11/11
    IMRT/IGRT 80 grays 12/11
    Bone mets discovered 3/12
    Provenge declared a "bust"
    Taxotere infusions started 4/12
    PSA Coming Down
    PSA Going Back Up!!
    Taxotere declared a "bust"
    Zytiga, here we come!
    BAAD SE's on Zytiga, PSA quintupled!
    Now on Xtandi and Samarium 153

  2. #2
    Top User lancepeace's Avatar
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    Sorry to hear about the bone mets. I don't have them yet. This clinical trial might be of interest to you:

    http://clinicaltrials.gov/ct2/show/N...antinib&rank=1
    It seems to be in Michigan, though.
    Good luck.
    DOB Sept. 1947. Prostate cancer Gleason 7 (3+4), PSA 5 in Oct 2010. Cryoablation Jan. 2011. Had some complications.
    Experienced nocturia, irritable bladder summer 2011. "Agent Orange"compensation from VA Oct 2011.
    PSA: .05 01/26/2012, .06 6/26/2012, .04 12/24/2012, .04 6/26/13, .05 1/27/14, .05 10/21/14
    I am eating vegan mostly plus a little fish. Take some supplements.
    (Any advice given is the personal opinion of a layman and is not intended to replace the advice of a health professional.)

  3. #3
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    Well, actually, that was the only good news I got from my trip to Sand Lake Imaging last week: no bone mets. "At least 10 or 11 lymph node tumors", along my lumbar spine, just above the level of my previous salvage radiation. To the best of my knowledge, I have absolutely no symptoms from the mets....so far. SequoiaR, how fast is your PSA doubling? What is it currently? My last check about 2 weeks ago: 25.6. Ah, the joys of Gleason 9.....

    BTW, a fellow BoBer was in the PET scan just ahead of me. Gleason 7 PCa for 16 years, the last 5 under the care of Dr. Myers. He had failed HDT and had been on Ketoconazole for some time. He said it made him sick as a dog and very weak. He was hoping he was done with it. His PSA peak? 5.XX.

    mkane09
    PSA 6.48, biopsy Gleason 3+4, robotic prostatectomy 9/17/08, pathology Gleason 4+5, pathologic stage T2c, positive margins, SRT completed May 22, 2009. 1st post-radiation PSA, 8-4-09, <0.06. 2nd post-radiation PSA 12-22-09 <0.06. PSA, July 23, 2010: <0.06. PSA, January 10, 2012: 13.90. Re-test, February 6, 2012: 16.47. April 6, 2012: 25.6. PSA, May 2, 2012: 37.74. PSA, May 27, 2012: 37.4. PSA, June 17, 2012: 51. PSA, Sept 27, 2012: 110.24. PSA, January 28, 155. May, 2013, Well, you get the idea...

  4. #4
    Newbie New User
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    Husband's oncologist says everyone with high Gleason has seeding of bone from very beginning, but it is variable when they start growing. Husband has had Gleason 8 for 10 years now, treated with every treatment available. Lots of bone mets, but fortunately they don't give much pain. Latest treatment he will get: alpharadon (needs one simple IV infusion to start with, and few sideeffects) is on fast track at FDA for approval. Specific for bone mets. While awaiting approval, some research centers are just now starting to give it to men who are appropriate. However, think a criterion is to have had taxotere treatment and it no longer works (most drugs work for a while, then stop. ) Lots of treatment options available for you at this point.

  5. #5
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    Update: I am now on Taxotere (3-week infusion), plus some other "helper" drugs. I have had so many needle-pricks, blood draws, and infusions that "they" are having a hard time finding useful veins (at least in my arms--where do they go from there--legs?).

    >SequoiaR, how fast is your PSA doubling? What is it currently?<

    Last month I had a PSA test to see how the extensive 80 Grays of radiation beat down the cancer. My pre-radiation PSA was 7.8; post-radiation was "5". Hmmm. I was suspicious that the number should have been MUCH lower. I am told that sometimes it took months for the radiation to work its magic, so I had another date with PSA scheduled for May. Then I went bold and ASKED for a bone scan. It was granted. That was BEFORE I had excruciating pain in my chest, spine and ribs (creeping up on me the past month--but truthfuly I had a "sore spot" by my sternum that didn't heal in two months). Bone scan results only last June showed NO bone mets. This scan showed me RIDDLED with bone mets, in all the places that ached. The latest PSA test came back--"greater than 20". OMG. That's at least FOUR times last month's reading!! So maybe my "doubling rate" is two weeks????

    I was in the lowest, darkest region of my mind a few days before the Taxotere infusion, knowing I was truly "dying" with a close "expiriation date". I was thinking all my efforts in my little orchard, that were just now bearing miniature, growing fruit, would not be eaten by me this summer. I had done my last this-or-that, etc., and would leave a "widow" to fend for herself. Such mental agony.

    Now I'm in "pain management" with Vicodin (Dr. said I could have stronger stuff). But the pain seems to have stabilized and partially retreated with the Taxotere cocktail infusion (only 2 days ago!). I had the characteristic astringent tongue (like sucking on an un-ripe persimmon), tingles in the fingers and toes, and flushed face characteristic of Taxotere side-effects. UNLIKE "Provenge" (which I now think did NOT take in me--NO evidence of it retarding the cancer since August infusions) which has no real side effects I could feel, at least this Taxotere impresses me with ACTION I can FEEL!
    Last edited by sequoiaranger; 08-29-2012 at 03:28 PM.
    T-3, Gleason 9+
    RRP 2-26-07
    Was using Lupron HDT--
    Successful for four years,
    Not working anymore!
    Fast-rising PSA 6/11
    Provenge started 8/11
    PCa invasion of bladder 9/11
    Fossa lesion discovered 11/11
    IMRT/IGRT 80 grays 12/11
    Bone mets discovered 3/12
    Provenge declared a "bust"
    Taxotere infusions started 4/12
    PSA Coming Down
    PSA Going Back Up!!
    Taxotere declared a "bust"
    Zytiga, here we come!
    BAAD SE's on Zytiga, PSA quintupled!
    Now on Xtandi and Samarium 153

  6. #6
    Senior User
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    Location
    Ramona, California
    Posts
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    Sheesh! I am in IMMENSE pain in the ribs from time to time. My oncologist suggested I not play golf or other "strenuous activities" for fear of exacerbating the bone mets. Well....I thought I was "being careful" when I hauled a trash can up a flight of stairs. No problem then, but a few hours later my ribs just SCREAMED at me! The back muscles were "spasming" and I guess pulling on the weakened bones or something. Anyway, I had planned a road trip to see a good friend and had to cancel. NO WAY I could drive! So I'm hoping some rest and relaxation will "cure" this and get me back to merely dull ache. I may have to acquire some STRONG anti-pain pills as well. ;-(
    T-3, Gleason 9+
    RRP 2-26-07
    Was using Lupron HDT--
    Successful for four years,
    Not working anymore!
    Fast-rising PSA 6/11
    Provenge started 8/11
    PCa invasion of bladder 9/11
    Fossa lesion discovered 11/11
    IMRT/IGRT 80 grays 12/11
    Bone mets discovered 3/12
    Provenge declared a "bust"
    Taxotere infusions started 4/12
    PSA Coming Down
    PSA Going Back Up!!
    Taxotere declared a "bust"
    Zytiga, here we come!
    BAAD SE's on Zytiga, PSA quintupled!
    Now on Xtandi and Samarium 153

  7. #7
    Regular User
    Join Date
    Apr 2012
    Posts
    35
    I'm so sorry you are in such pain ... hopefully the doctor can give you something that will help. Know everyone is praying for you.

  8. #8
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    DebbieMH--Thanks for the moral support. I know that everyone here is "concerned" with everyone else in the "club" and wishes the best. *ANY* success story fuels optimism but we are dealing with a wily "beast" here that has managed to out-fox the medical establishment even in these amazing modern times. Good vibes to us all!

    FWIW, the pain from the bone mets seems to have stabilized and even "retreated" a bit. Vicodin, Ibuprofen, and Percoset help with the pain, but I always abstain from pain-killer drugs the first few hours of the day to assess "the state of the pain". I truly believe I *AM* getting better, not just pollyanna wishfulness! Presumably the Zometa (bone-builder) has started to repair cancer-damaged bone material whilst the Taxotere disrupts cell functioning/repair/replacement and the cancer is temporarily stymied, all leading to reduced trauma on my bones (thus some diminution in pain).

    I really feel such a "pansy", as nearly ANY physical labor is eschewed (so I don't wrench my back unknowingly, as I have done a few times in the last months), but I truly think my situation is IMPROVED over the last two weeks.
    T-3, Gleason 9+
    RRP 2-26-07
    Was using Lupron HDT--
    Successful for four years,
    Not working anymore!
    Fast-rising PSA 6/11
    Provenge started 8/11
    PCa invasion of bladder 9/11
    Fossa lesion discovered 11/11
    IMRT/IGRT 80 grays 12/11
    Bone mets discovered 3/12
    Provenge declared a "bust"
    Taxotere infusions started 4/12
    PSA Coming Down
    PSA Going Back Up!!
    Taxotere declared a "bust"
    Zytiga, here we come!
    BAAD SE's on Zytiga, PSA quintupled!
    Now on Xtandi and Samarium 153

  9. #9
    Regular User
    Join Date
    Apr 2012
    Posts
    35
    I'm glad to hear you are feeling better .... prayers do help!

  10. #10
    Newbie New User
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    May 2012
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    Seq., a newbie to the sight and getting an education. Please continue your comments and observations. It hasn't yet been verified, but they found areas of mets on my lumbar after an MRI last week. Got an appointment with urologist today, after I got a CT for chest, abdomen, and pelvis. My PSA's over the years have been low, but my primary felt hardness yesterday. Keep up the tough fight, and help us newbies with suggestions.

 

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