A website for discussions about any type of cancer, including lung cancer, breast cancer, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others
+ Reply to Thread
Page 1 of 3 1 2 3 LastLast
Results 1 to 20 of 45

Thread: Bone Mets--Who has them?

  1. #1
    Senior User
    Join Date
    Nov 2007
    Location
    Ramona, California
    Posts
    131

    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
    Join Date
    Apr 2011
    Location
    Cleveland, Ohio
    Posts
    739
    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
    Senior User
    Join Date
    Sep 2008
    Location
    East TN
    Posts
    339
    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
    Join Date
    Mar 2012
    Posts
    3
    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
    Senior User
    Join Date
    Nov 2007
    Location
    Ramona, California
    Posts
    131
    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
    Join Date
    Nov 2007
    Location
    Ramona, California
    Posts
    131
    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
    Senior User
    Join Date
    Nov 2007
    Location
    Ramona, California
    Posts
    131
    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
    Join Date
    May 2012
    Location
    USA East Coast
    Posts
    2
    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.

  11. #11
    Senior User
    Join Date
    Nov 2007
    Location
    Ramona, California
    Posts
    131
    Thanks to my "fans" for your encouragement! I got my second every-three-weeks Taxotere infusion a couple of days ago, and the day-after Neulasta shot. So far my side effects from this new infusion pale against the first one. A little more tongue-weirdness, but not much, no hot flashes or cheek radiance, and the bone-aching effects of the Neulasta seem to be very mild this time. Whew!! I am getting a transfusion of red blood, as my cell count is low (I could have told them that!), but otherwise "the numbers" look good on my blood report. Oh, my PSA is now officially SIXTY-THREE!! I am aghast, but wutchagonnado? "We/they" are doing all possible and reasonable measures to knock down this monster.

    So.... I am going on a cruise with my friends this Saturday (planned nearly a year ago, pre-cancer flare-up). Ain't gonna let this stuff threaten EVERY aspect of my life!! I'll spend a little more $$ seeking paid help moving my luggage or heavy objects to spare my back, opt out of the "dance contests" and sports events aboard ship, and just enjoy a balcony at sea while the cocktail of drugs combats my metastasis.
    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

  12. #12
    Regular User
    Join Date
    Apr 2012
    Posts
    35
    Quote Originally Posted by sequoiaranger View Post
    So.... I am going on a cruise with my friends this Saturday (planned nearly a year ago, pre-cancer flare-up). Ain't gonna let this stuff threaten EVERY aspect of my life!! I'll spend a little more $$ seeking paid help moving my luggage or heavy objects to spare my back, opt out of the "dance contests" and sports events aboard ship, and just enjoy a balcony at sea while the cocktail of drugs combats my metastasis.
    Great! Hope you have a wonderful time and yes, pay people to move your luggage and just relax! I'm happy for you.

  13. #13
    Senior User
    Join Date
    Nov 2007
    Location
    Ramona, California
    Posts
    131

    Delayed Onset of Neulasta Effects

    I spoke too soon! Kinda forgot that the Neulasta effects don't kick in for 24-36 hours. Hoo boy! Yes, achy bones EVERYWHERE, "revolving", sporadic, shooting pains in the legs, wrists, and ankles, and cheek "radiance". Whether by way of the Taxotere or Neulasta, I have sore spots in my mouth, and my tongue is just about "dead" for taste. But...this all happened last infusion, too, wearing off as the days passed. This time the effects are markedly milder. Still not "fun".

    Got a shot of "Procrit" today, too---that's a red-blood-cell builder. Whether from it or...(?)... I had marked pain between my shoulder blades in a couple of hours, and real fatigue. Don't know if it is a connection, or I "overdid" something.

    Thanks, DebbieMH.
    Last edited by sequoiaranger; 05-11-2012 at 03:50 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

  14. #14
    Regular User
    Join Date
    Apr 2012
    Posts
    35

    How are you doing?

    did you go on your cruise?

  15. #15
    Senior User
    Join Date
    Nov 2007
    Location
    Ramona, California
    Posts
    131

    Cruise Completed!

    Yes, I'm back from my cruise to Vancouver, BC, and road-trip to see my son in Port Townsend, Washington. My careful regimen of no-lifting and use-the-porters paid off. I had a nice time with friends aboard the ship with only mild back pain. My taste buds were "dead" for several days, and I missed the outrageously tasty dishes customarily served aboard ship, but....my taste buds decided to make a comeback in time for "Lobster Night" and I indulged with TWO lobster dinners to "celebrate". My spine aches if I stand too long, but sitting down in a comfy chair for a few minutes seems to smooth it all out. I am "losing feeling" in my fingertips, lower lip, and cheeks, but my hair loss seems to have halted (90% gone the other 10% is there but not growing). Cest l'guerre against the MONSTER.

    The good news is I am weaning myself off the pain pills (mild opiates---Vicodin and Percoset) as the "general" pain slowly subsides day by day. This morning's un-medicated "State of the Pain" finds me mobile and active without pain, just "feeling" in the spine and ribs. So....I truly think the Taxotere is driving the cancer out and my body is restoring the "infected" cells with normal ones (thereby lessening the pain). WHAT A DIFFERENCE from a month ago!!!
    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

  16. #16
    Regular User
    Join Date
    Apr 2012
    Posts
    35
    Quote Originally Posted by sequoiaranger View Post
    Yes, I'm back from my cruise to Vancouver, BC, and road-trip to see my son in Port Townsend, Washington. My careful regimen of no-lifting and use-the-porters paid off. I had a nice time with friends aboard the ship with only mild back pain. My taste buds were "dead" for several days, and I missed the outrageously tasty dishes customarily served aboard ship, but....my taste buds decided to make a comeback in time for "Lobster Night" and I indulged with TWO lobster dinners to "celebrate". My spine aches if I stand too long, but sitting down in a comfy chair for a few minutes seems to smooth it all out. I am "losing feeling" in my fingertips, lower lip, and cheeks, but my hair loss seems to have halted (90% gone the other 10% is there but not growing). Cest l'guerre against the MONSTER.

    The good news is I am weaning myself off the pain pills (mild opiates---Vicodin and Percoset) as the "general" pain slowly subsides day by day. This morning's un-medicated "State of the Pain" finds me mobile and active without pain, just "feeling" in the spine and ribs. So....I truly think the Taxotere is driving the cancer out and my body is restoring the "infected" cells with normal ones (thereby lessening the pain). WHAT A DIFFERENCE from a month ago!!!
    Great ... glad you were able to enjoy yourself and the pain is getting better. Thanks for the update! Have a nice Memorial Day weekend.

  17. #17
    Top User
    Join Date
    Apr 2011
    Location
    Cleveland, Ohio
    Posts
    739
    http://clinicaltrials.gov/ct2/show/NCT01605227

    The COMET-1 Phase 3 trial will be opening soon. Requires prior use of HT and Docetaxel and Abiraterone or MDV3100

  18. #18
    Senior User
    Join Date
    Nov 2007
    Location
    Ramona, California
    Posts
    131

    Midway Through Chemo

    I am halfway through my third of six scheduled infusions of Taxotere. Last month my PSA was measured at "63", and fairly recently re-measured at "36". I suppose if I get alarmed at any "doubling" of PSA, that this "halving" should be good news. Somehow I am NOT elated.

    Though my various pains have been markedly reduced, I seem to have "feelings" in bones heretofore NOT affected previously. Can't really tell if the bone mets are spreading but less destructive/painful, or if the Zometa/Neulasta/Taxotere is rooting out the beginning cancer in these "new" spots and THAT is why I am feeling it. Dunno.

    But, fersure, this Taxotere regimen has "given my life back" and I can be productive and relatively pain-free despite fatigue and reduction in mobility/strength. But I am definitely NOT "out of the woods" yet!!
    Last edited by sequoiaranger; 06-23-2012 at 03:54 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

  19. #19
    Newbie New User
    Join Date
    Mar 2011
    Posts
    5
    Glad to here you are still hanging in there. My bone scans look like a christmas tree. I have done all of the treatments over the last 3 and a half years. 8 months of Zytiga lowered my PSA from over 6000 to 86 over 6 months but now after 8 weeks since last test it is 366 and it looks like the end of that drug and now qualify for Provenge. If that doesn't work, Alpharidin will be next. Keep up the fight.

  20. #20
    Senior User
    Join Date
    Nov 2007
    Location
    Ramona, California
    Posts
    131

    More Good News

    Both my oncologist and urologist proclaim I am "doing great" with Taxotere chemotherapy. My latest PSA (much shorter interval than last time) showed a drop to "25", so though the number is "high" compared to, say, last year at this time, the RELATIVE drop is indicative of success. Apparently the more aggressive the cancer (mine is Gleason 9+, with rapid multiplication), the better the Taxotere works. Still very unpleasant side effects for about a week out of the three-week cycle, but at least it's not the bedridden, vomit-into-a-bucket types of yore. I have actually been given "clearance" to go out golfing again--taking it easy to assess how much strain is being imposed on my compromised body. No "swinging for the fences"!!

    Racela and Trex--keep on keepin' on!
    Last edited by sequoiaranger; 06-23-2012 at 03:55 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

 
+ Reply to Thread

Similar Threads

  1. Bone mets?
    By Martha56 in forum Pancreatic Cancer Forum
    Replies: 17
    Last Post: 01-31-2013, 02:55 AM
  2. Liver and Bone Mets.
    By Winston44 in forum Breast Cancer Forum
    Replies: 1
    Last Post: 08-12-2010, 02:28 PM
  3. low psa with bone mets?
    By connsteele in forum Prostate Cancer Forum
    Replies: 4
    Last Post: 07-10-2008, 10:07 AM
  4. Possible bone mets?
    By dizzybuff38 in forum Breast Cancer Forum
    Replies: 7
    Last Post: 10-31-2005, 07:52 AM
  5. Symptoms of bone mets
    By Lane in forum Breast Cancer Forum
    Replies: 4
    Last Post: 03-15-2005, 02:58 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts