Hi all,
I just found this forum and have been going through some past posts. There's still a lot to catch up on! I was diagnosed in November 1997 and have been "Bearing up under the strain" ever since. I am grateful to have an excellent team of doctors who have worked hard for me.
Going to finish reading the past posts, so that may take a while!
Take Care, Gary
Forums
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: Diagnosed with multiple myeloma 15 years ago
Hi Gary,
You were diagnosed in 1997? So you are 14+ years into this? That's awesome! I mean, the fact that you have had many years so far. What is your history? Treatment, stem cell transplants, etc? I am a 40-year-old "smolderer" diagnosed in December 2011.
Welcome and Best Wishes,
Art.
You were diagnosed in 1997? So you are 14+ years into this? That's awesome! I mean, the fact that you have had many years so far. What is your history? Treatment, stem cell transplants, etc? I am a 40-year-old "smolderer" diagnosed in December 2011.
Welcome and Best Wishes,
Art.
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Diagnosed with multiple myeloma 15 years ago
Hi Gary,
I am looking forward to reading more about your journey from 1997 to present. Fifteen years is impressive, admirable and inspirational.
Jenn
I am looking forward to reading more about your journey from 1997 to present. Fifteen years is impressive, admirable and inspirational.
Jenn
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Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
Re: Diagnosed with multiple myeloma 15 years ago
Well ... in November 1997 I was up, getting ready for work, and going to have a shower. When I reached up to grab a towel off the shower bar, all of a sudden I was on the floor and I could barely breathe, talk, or move!
After taking an ambulance to the local hospital, they confirmed that 3 vertebrae were fractured, with one being compressed and impacting on my spinal chord (1.5 millimeter away). The chord was doing a double 90 degree bend.
After 3 weeks of doing probably every test they had, they still hadn't come up with why this happened. I was then transferred over to Vancouver Hospital, spine unit. Within a half hour, they had done a biopsy and then came back to tell me that I had multiple myeloma. They also said that it was advanced stage 3 and that I had about 6 months to live!
I was devastated! About 3 hours later, the doctor came back and revised the estimated survival to 18 months.I was introduced to the bone marrow transplant staff, who were great! I was put on dexamethasone and put on the list for a stem cell transplant.
I had the stem cell transplant in June and August. but in the meantime, I had 2 more vertebrae go. The stem cell transplant was a success and I was in remission for about 4 years before it came back. Since then, a lot of bones have broke, a lot of drugs have been consumed, a lot of surgeries, a lot of radiations, a lot of emotions have soared, then plummeted.
I've been on Interferon (for only 3 weeks, as I couldn't tolerate it), thalidomide, Revlimid (twice), and am now taking pomalidomide (Pomalyst, Imnovid). All of these with the ever present dexamethasone. The dex gave me Type 2 diabetes and I'm also on insulin. It seems these drugs work great for a time, then the multiple myeloma does an end run and comes back with a vengeance!
I think the best thing i did at the onset was to turn my will and life over to the God of my understanding and let him do his thing! It has helped with a lot of the fear i had. I also made a decision to blindly trust my doctors and the rest of the team, as they had a good handle on this, I'm glad I did.
This disease not only affects me, but also those close to me. My kids were fairly young when I was diagnosed and they have handled it pretty well, but I can still notice fear in them regarding my health. My wife has been with me throughout the whole ordeal and is a source of great comfort, but it has definitely affected her also. Sometimes we feel like saying enough of the testing already!
Living with this has caused me to totally change my lifestyle, but it's still good! I go through ups and downs, but still manage to keep my humor (at least I still think I'm funny!).
Anyway, that's it in a nutshell. Take Care, Gary
P.S. - I love to prove the initial doctor wrong when he gave me 18 months!
After taking an ambulance to the local hospital, they confirmed that 3 vertebrae were fractured, with one being compressed and impacting on my spinal chord (1.5 millimeter away). The chord was doing a double 90 degree bend.
After 3 weeks of doing probably every test they had, they still hadn't come up with why this happened. I was then transferred over to Vancouver Hospital, spine unit. Within a half hour, they had done a biopsy and then came back to tell me that I had multiple myeloma. They also said that it was advanced stage 3 and that I had about 6 months to live!
I was devastated! About 3 hours later, the doctor came back and revised the estimated survival to 18 months.I was introduced to the bone marrow transplant staff, who were great! I was put on dexamethasone and put on the list for a stem cell transplant.
I had the stem cell transplant in June and August. but in the meantime, I had 2 more vertebrae go. The stem cell transplant was a success and I was in remission for about 4 years before it came back. Since then, a lot of bones have broke, a lot of drugs have been consumed, a lot of surgeries, a lot of radiations, a lot of emotions have soared, then plummeted.
I've been on Interferon (for only 3 weeks, as I couldn't tolerate it), thalidomide, Revlimid (twice), and am now taking pomalidomide (Pomalyst, Imnovid). All of these with the ever present dexamethasone. The dex gave me Type 2 diabetes and I'm also on insulin. It seems these drugs work great for a time, then the multiple myeloma does an end run and comes back with a vengeance!
I think the best thing i did at the onset was to turn my will and life over to the God of my understanding and let him do his thing! It has helped with a lot of the fear i had. I also made a decision to blindly trust my doctors and the rest of the team, as they had a good handle on this, I'm glad I did.
This disease not only affects me, but also those close to me. My kids were fairly young when I was diagnosed and they have handled it pretty well, but I can still notice fear in them regarding my health. My wife has been with me throughout the whole ordeal and is a source of great comfort, but it has definitely affected her also. Sometimes we feel like saying enough of the testing already!
Living with this has caused me to totally change my lifestyle, but it's still good! I go through ups and downs, but still manage to keep my humor (at least I still think I'm funny!).
Anyway, that's it in a nutshell. Take Care, Gary
P.S. - I love to prove the initial doctor wrong when he gave me 18 months!
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: Diagnosed with multiple myeloma 15 years ago
Wow ... that's quite a story. Certainly encourages me as I just passed my first anniversary of diagnosis, and 5 months out of an autologous stem cell transplant. Keep it going!
And yes, God plays a big part in handling this, doesn't He? I studied Job early in this thing, and that really spoke to me in a big way. Still helps. "Enough of the testing" ... hehe. I hear that.
And yes, God plays a big part in handling this, doesn't He? I studied Job early in this thing, and that really spoke to me in a big way. Still helps. "Enough of the testing" ... hehe. I hear that.
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Diagnosed with multiple myeloma 15 years ago
Hi Gary, thanks for sharing your journey with us. It would be great to read your posts since you really have a vast amount of experience and maybe they will let you do a column if you volunteer? Thanks again. Terry
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Diagnosed with multiple myeloma 15 years ago
Gary,
Wow. What a run you've had. Absolutely we need to rely on God. You are a brave man and I think we can all draw courage from you. Thanks for your story.
Best wishes,
Art
Wow. What a run you've had. Absolutely we need to rely on God. You are a brave man and I think we can all draw courage from you. Thanks for your story.
Best wishes,
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Diagnosed with multiple myeloma 15 years ago
Hi Gary! I think that most of us are the 'newbies' compared to you! Nice to hear your story of perseverance and determination ....hope you get a lot out of reading the Beacon also. Hope also that the new drug pomalidomide (sp?) works really well for you. Best wishes to you and your family!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Diagnosed with multiple myeloma 15 years ago
Thanks for all the welcomes! Yes, it was Vancouver, British Columbia that I went to. Great hospital.
I just developed the philosophy of living one day at a time and sometimes even one minute at a time, but eventually got through whatever it was. When I think back to what it was like, it seems hazy now, but I think that's a way to protect me from dwelling on some negative experiences. I had my back fused with Harrington rods (10 vertebrae) and that was no fun, but today it's hard to remember all the pain and that's a good thing! And having chemo brain helps! I try and wake up each day with a gratitude list and that keeps me from dwelling on the negatives.
I just developed the philosophy of living one day at a time and sometimes even one minute at a time, but eventually got through whatever it was. When I think back to what it was like, it seems hazy now, but I think that's a way to protect me from dwelling on some negative experiences. I had my back fused with Harrington rods (10 vertebrae) and that was no fun, but today it's hard to remember all the pain and that's a good thing! And having chemo brain helps! I try and wake up each day with a gratitude list and that keeps me from dwelling on the negatives.
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
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