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  1. #1
    Banned. DnvrFox's Avatar
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    Multiple Myeloma Anyone?

    Multiple Myeloma Anyone?

    A good friend just diagnosed with Multiple Myeloma.

    http://www.multiplemyeloma.org/about_myeloma/index.php

    He is about 2 years younger than I am.

    I have done the Google searches, etc., and it seems MM is NOT a good thing to have.

    Just wondering if anyone here has any 1st hand experience with this disease, particularly newer clinical trials/treatments?

  2. #2
    rae
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    legs full of molasses rae's Avatar
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    I don't, but I hope that your friend has good luck with his treatment. I am sure that you have already seen that there are lots of research trials going on.

  3. #3
    In the right lane gerv's Avatar
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    My aunt just passed away with this. However, she had many good years between being diagnosed and this recent event. I hope your friend can learn to accept this diagnosis and learn to live his life -- however long it might be -- peacefully and gracefully. In fact, I also hope I can do the same.

  4. #4
    Fraser Valley Dave
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    Lost my sister to multiple myeloma just under a year ago, they are having some success with stem cell transplant therapy holding it at bay and extending quality of life longer than ever before. You can PM me.

  5. #5
    Rides again HiYoSilver's Avatar
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    Nasty disease. Mom lasted 9 years with increasing problems. As of two years ago, no known cure and not much to really help quality of life. Note the magical urine based injection treatments are hooey, but they get so desperate they try anything.
    Hi 'o Silver away

  6. #6
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    Four years ago my mother was diagnosed with mm on a Wednesday and we were scheduled to meet with the doctor on the following Monday to discuss treatment options. She got sick and went into the hospital on Saturday afternoon and died that Sunday. By the time she was diagnosed she was stage three and she had been ill for two years but the doctors never were able to figure out what the underlying issue was until to late. The doctor, who we did meet with on Monday, felt that she got a sinus infection and with no white blood cells to protect her is what triggered her death. If your friend was diagnosed early treatments may be able to help with the quality of life but to the best of my knowledge this is a terminal disease.

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    Old Fogy
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    I once worked for man with MM. He went in every year for treatment from about age 60 until he died of unrelated causes at about age 84. Prognosis is good, with proper treatment. Control is the aim, not necessarily cure.

  8. #8
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    I have just been diagnosed with Smoldering Myeloma. I am 64, weigh 315, and have just begun a treatment called RVD (Revlimid, Velcade,and dexamethasone). My Hematologist/Oncologist says the medical advancements in treatment have come so far in the past 18 months. I love to ride and work on bikes. I follow the Clydesdale forum mostly, but did a search on myeloma in this forum to find this thread.

    I am keenly interested in communicating with any others who have this disease and how it relates to biking in any way. Bikes aren't Jesus, but I am hoping they can help my walk ... er, ride.

  9. #9
    USMC Veteran qcpmsame's Avatar
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    dpdemos,
    I hope you get to post and participate here in 50+ and the Clyde forum for a long time. Your attitude is refreshing to read and speaks well of you. Best wishes for your treatment to go well.

    Bill
    "I Can Do All Things Through Christ Who Strengthens Me" Philippians 4:13

    "We can't control that we have Parkinson's, but we can control how we live with Parkinson's" Davis Phinney

  10. #10
    Banned. DnvrFox's Avatar
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    Quote Originally Posted by DnvrFox View Post
    Multiple Myeloma Anyone?

    A good friend just diagnosed with Multiple Myeloma.

    http://www.multiplemyeloma.org/about_myeloma/index.php

    He is about 2 years younger than I am.

    I have done the Google searches, etc., and it seems MM is NOT a good thing to have.

    Just wondering if anyone here has any 1st hand experience with this disease, particularly newer clinical trials/treatments?
    Man, I started this thread 4 years ago. I wonder how that friend is doing? Too bad - I don't even remember who that friend was!!

    dpdemos - good luck.

  11. #11
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    Quote Originally Posted by dpdemos View Post
    I have just been diagnosed with Smoldering Myeloma. I am 64, weigh 315, and have just begun a treatment called RVD (Revlimid, Velcade,and dexamethasone). My Hematologist/Oncologist says the medical advancements in treatment have come so far in the past 18 months. I love to ride and work on bikes. I follow the Clydesdale forum mostly, but did a search on myeloma in this forum to find this thread.

    I am keenly interested in communicating with any others who have this disease and how it relates to biking in any way. Bikes aren't Jesus, but I am hoping they can help my walk ... er, ride.
    My husband was diagnosed with smoldering myeloma ~ 10 years ago. They followed his proteins for several years, til his onc doc (a MM specialist at the big U of Arizona Cancer Center) moved away. When he went to see a new onc doc, a local guy in our town, this doc said "I don't think you're really a Smoldering Myeloma. Let's just CT scan your whole body and see what we find." They found lungs "scattered with spiculated masses." Turned out to be lymphoma. A good form of lymphoma, actually (MALT lymphoma). Don had a round of rituxan and one of COP way back then, nothing since. The MALT lymphoma doesn't cause him much of a problem and people rarely die from it unless it morphs into a more aggressive kind of lymphoma.

  12. #12
    A might bewildered... Dudelsack's Avatar
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    This king of stuff is always a shock. I just got a call from my wife that an acquaintance of ours, a lovely younger woman with 0 risk factors for lung cancer, was just diagnosed with stage 4 disease. Never makes much sense.

  13. #13
    Senior Member nkfrench's Avatar
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    Lost my dad to multiple myeloma early 1980's. He was diagnosed in his early 60's when he slipped and fell yet broke vertebrae.
    The docs gave him a year, he endured 5 years of misery. Shingles was the icing on the cake.
    His disease had progressed too much for him to survive the treatments that offered the best chances. At the time, a bone marrow transplant was the best option.
    From the above it sounds that vastly improved outcomes are possible now.

  14. #14
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    Ten days ago, I underwent a stem cell transplant. I currently have no immune system, and fatigue is prominent. I look forward to better days. Actually, the hope of getting back on my bike really is one of my fundamental motivations.

    The bike forums are a refreshing diversion from the challenge I'm experiencing. So, keep up the good work in posting interesting bike chatter. It really helps.

  15. #15
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    Quote Originally Posted by dpdemos View Post
    Ten days ago, I underwent a stem cell transplant. I currently have no immune system, and fatigue is prominent. I look forward to better days. Actually, the hope of getting back on my bike really is one of my fundamental motivations.

    The bike forums are a refreshing diversion from the challenge I'm experiencing. So, keep up the good work in posting interesting bike chatter. It really helps.
    Best of luck.

  16. #16
    Senior Member Bikey Mikey's Avatar
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    Good luck-positve thoughts your way.
    Please support diabetics like myself, a red rider, by supporting the American Diabetes Association.
    If you see a Tour de Cure event, consider participating or supporting a Red Rider or other participant.

    My nephew's and his two friends' blog about their riding the East Coast, Maine to the Keys:
    http://brobreak.wordpress.com/

    My Strava account

  17. #17
    USMC Veteran qcpmsame's Avatar
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    I hope this works out for you, please be careful with things and your lack of immune system protections. Its a place you can get a wonderful sense of support in the 50+, glad we can provide you some relief when things are rough.

    Bill
    "I Can Do All Things Through Christ Who Strengthens Me" Philippians 4:13

    "We can't control that we have Parkinson's, but we can control how we live with Parkinson's" Davis Phinney

  18. #18
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    Quote Originally Posted by dpdemos View Post
    Ten days ago, I underwent a stem cell transplant. I currently have no immune system, and fatigue is prominent. I look forward to better days. Actually, the hope of getting back on my bike really is one of my fundamental motivations.

    The bike forums are a refreshing diversion from the challenge I'm experiencing. So, keep up the good work in posting interesting bike chatter. It really helps.
    I'm pulling for good times ahead for you. Have your physicians given you any target date for being able to ride again?

    Back when I was just out of college, I had a job doing research in an oncology department. My supervisor was a physician and one day when he brought a bone marrow sample to me he was so glum I asked him what was wrong. It turns out the sample was from a young woman who was pregnant with her first child and had a husband who was an up-and-comer on the local media scene. Her diagnoses was a form of acute leukemia that had a bad prognosis. About a year later, I asked my supervisor what ever became of her. He began to jump up and down with childish glee as he told me of the smashing success she had with a bone marrow transplant.

    I hope your physicians start jumping up and down like children soon. It's such a beautiful sight to behold.

  19. #19
    Semper Fidelis
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    dpdemos,
    best of luck and i hope everything workes out for you. You have a great positive attitude and keep the faith!

    Gary
    "Advantages Must Be Pressed, Disadvantages Must Be Overcome"

  20. #20
    Senior Member Jim from Boston's Avatar
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    Quote Originally Posted by dpdemos View Post
    Ten days ago, I underwent a stem cell transplant. I currently have no immune system, and fatigue is prominent. I look forward to better days. Actually, the hope of getting back on my bike really is one of my fundamental motivations.

    The bike forums are a refreshing diversion from the challenge I'm experiencing.
    So, keep up the good work in posting interesting bike chatter. It really helps.
    My best wishes also for your recovery. I can relate to your comments about anticipating a return to cycling, and the support offered by Bike Forums. I was in a cycling accident in June of 2012, in the hospital for six weeks and off work for three months. I resumed commuter cycling after five months. Certainly my circumstances were different than yours.

    I had lived an active cycling lifestyle and actively posted to BF, and I dealt with the uncertainty of returning to cycling. During my recovery I continued to avidly read the Forums, from afar as it were, about others' cycling experiences. A fellow subscriber reported my accident to the Commuting Forum, and I received many good wishes, as well as from subscribers to Fifty-Plus, many whom I did not know. I was so glad to be able to reply after about four weeks.

    I also made note of your previous post about smoldering myeloma, 12/19/12. See my PM.
    Last edited by Jim from Boston; 03-07-14 at 02:53 AM.

  21. #21
    Senior Member
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    Unfortunately my experience is not good. My mother was diagnosed with stage 4 Multiple Myeloma and passed away in just over two months. Hopefully your friend was diagnosed early enough to treat.

  22. #22
    Senior Member zandoval's Avatar
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    Start with gene sequencing and work from there...

    That will save allot of time and give a better probability for treatment options...

  23. #23
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    I appreciate all the encouragement. I shall ask my Dr. today when he advises getting back on the bike. It means a great deal to have support.

  24. #24
    USMC Veteran qcpmsame's Avatar
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    Best of luck with your physician, hopefully they will allow you to ride some shortly. Please keep us posted on your recovery, as it progresses. Maybe a fresh thread about your recovery and return to riding would allow us to keep up, you certainly deserve your own place here.

    Bill
    "I Can Do All Things Through Christ Who Strengthens Me" Philippians 4:13

    "We can't control that we have Parkinson's, but we can control how we live with Parkinson's" Davis Phinney

  25. #25
    Seat Sniffer Biker395's Avatar
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    Quote Originally Posted by dpdemos View Post
    Ten days ago, I underwent a stem cell transplant. I currently have no immune system, and fatigue is prominent. I look forward to better days. Actually, the hope of getting back on my bike really is one of my fundamental motivations.

    The bike forums are a refreshing diversion from the challenge I'm experiencing. So, keep up the good work in posting interesting bike chatter. It really helps.
    Stick with it. The wife of one of my best friends was treated for MM with stem transplant. It took quite a while for the docs to auger in on the best treatment, but she's doing quite well now.
    Proud parent of a happy inner child ...
    www.photo395.com

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