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Started the process 6 months ago
My wife was diagnosed with active multiple myeloma 6 months ago. We take inspiration from all of you!
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
Re: Started the process 6 months ago
Very sorry for the reason you have to be here, but welcome. I'm a newbie myself, more new to multiple myeloma than your wife, actually, and agree that there are incredible stories here.
How was your wife's multiple myeloma discovered, how did it manifest, and what treatment is she on?
Would love to hear more about her story.
How was your wife's multiple myeloma discovered, how did it manifest, and what treatment is she on?
Would love to hear more about her story.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Started the process 6 months ago
We were very lucky, Janet's primary care physician spotted something in her blood chemistry 6 years ago, elevated LDH I think. After referral, the specialist mentioned something about a slightly elevated protein number that we would just watch for now 
! Had never heard of myeloma or smoldering myeloma for that matter.
Fast forward 6 years, the m protein spiked and she was called in for a bone marrow test. That's when we first heard the word "myeloma ". Of course, me being an engineer type of guy, Google here we go!
! Yikes! Scared the crap out of me! If anyone does that, please, please remember that any numbers or statistics you read older than 2013 are ancient history and anything older than 2015 is old news! Not kidding, the improvements they are making are real game changers!
Her version is known as IgG, first effect was severe anemia and her immune system totally crashed. Got shingles before we even started treatment.
Treatment was as follows : 1st cycle 40 mg dexamethasone once per week for a month. Next cycle added 25 mg Revlimid per day 21 day cycle. After 3 cycles, added Velcade to the mix for 3 more cycles. So the cycle count now is 6 dex, 5 Rev, and 3 Velcade.
By the time we started treatment, her blood chemistry was so low she was borderline stage 3. The good news is that after 2 cycles, the M protein was way lower and her Ig numbers were recovering. Currently, her anemia is gone, Ig numbers low but almost normal, and M protein barely detectable.
We are scheduled for a transplant in February.
To all my new found friends, as mentioned above, things are changing for the best quickly. Lots of reasons for hope! Keep the faith!
! Had never heard of myeloma or smoldering myeloma for that matter. Fast forward 6 years, the m protein spiked and she was called in for a bone marrow test. That's when we first heard the word "myeloma ". Of course, me being an engineer type of guy, Google here we go!
! Yikes! Scared the crap out of me! If anyone does that, please, please remember that any numbers or statistics you read older than 2013 are ancient history and anything older than 2015 is old news! Not kidding, the improvements they are making are real game changers! Her version is known as IgG, first effect was severe anemia and her immune system totally crashed. Got shingles before we even started treatment.
Treatment was as follows : 1st cycle 40 mg dexamethasone once per week for a month. Next cycle added 25 mg Revlimid per day 21 day cycle. After 3 cycles, added Velcade to the mix for 3 more cycles. So the cycle count now is 6 dex, 5 Rev, and 3 Velcade.
By the time we started treatment, her blood chemistry was so low she was borderline stage 3. The good news is that after 2 cycles, the M protein was way lower and her Ig numbers were recovering.
Currently, her anemia is gone, Ig numbers low but almost normal, and M protein barely detectable.We are scheduled for a transplant in February.
To all my new found friends, as mentioned above, things are changing for the best quickly. Lots of reasons for hope! Keep the faith!
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
Re: Started the process 6 months ago
You sound like a great support for your wife! She is very lucky to have you in her corner! You are so right about older statistics, even ones as recent as 2013. There is so much happening in myeloma treatment now and we must not lose sight of that.
Sounds as though your wife is responding very well to treatment. I hope that continues, and she sails into a stringent complete response!
Keep us posted!
Sounds as though your wife is responding very well to treatment. I hope that continues, and she sails into a stringent complete response!
Keep us posted!
Re: Started the process 6 months ago
You have found a great place. I am new as well. My husband was diagnosed just before Christmas and started treatment last week. He is on cyclophosphamide, Velcade, and dexamethasone (CyBorD) for four months and then a transplant.
Our myeloma specialist said that, at the conference he attended in December, the buzz word was CURE! He is so optimistic that in the fairly near future there will be a cure and at the very least it can be treated as a chronic disease, like high blood pressure or diabetes.
I am sure you will run across my posts often. Good luck to you and your wife.
Our myeloma specialist said that, at the conference he attended in December, the buzz word was CURE! He is so optimistic that in the fairly near future there will be a cure and at the very least it can be treated as a chronic disease, like high blood pressure or diabetes.
I am sure you will run across my posts often. Good luck to you and your wife.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Started the process 6 months ago
John, I appreciate your positive spirit, and you've followed the progress for multiple myeloma over the last years more than I have, considering I didn't know what multiple myeloma was until a couple months ago! You're very reassuring.
All medical people I talk to paint the same optimistic picture you do, offering the same perspective of it being increasingly viewed more as a chronic disease. Well, I'm not quite there yet - still a newbie and need some time to adjust to what's ahead. Still, I take the point, and we can all be grateful we're where we are now and not years ago.
Hope you'll update on your wife's progress and transplant as it goes along. Will be interested in following her progress, and am wishing her a very quick recovery!
All medical people I talk to paint the same optimistic picture you do, offering the same perspective of it being increasingly viewed more as a chronic disease. Well, I'm not quite there yet - still a newbie and need some time to adjust to what's ahead. Still, I take the point, and we can all be grateful we're where we are now and not years ago.
Hope you'll update on your wife's progress and transplant as it goes along. Will be interested in following her progress, and am wishing her a very quick recovery!
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
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