I had a bone marrow biopsy (BMB) done Monday (fortunately sedation was offered) and after 6 rounds of Velcade and 3 rounds of Revlimid (also weekly dex), my plasma cell percentage dropped from 80% to 4%!
Despite increasing kappa free light chains (1250 where norm is 19) and continued presence of amyloidosis, my local oncologist called SCCA [Seattle Cancer Care Alliance] and I am scheduled to arrive on October 1st. I don't know when I will actually transplant, but at least the process is on the calendar.
I plan to share as much as possible throughout the process and appreciate the support of this community and those who have shared their transplant journeys!
Forums
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: Autologous stem cell transplant scheduled
Good luck Cindy. I'm probably right behind you in November. Wishing you good luck and a successful ASCT. I'll be following your posts. Thanks for planning to share your experience.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Autologous stem cell transplant scheduled
Cindy and Dano - Good luck on your transplant journey. I had my transplant almost 2 months ago. The first 9 days were really tough, but once through those dark days, things were tolerable. I feel like a new person now and am pretty much living the life that I did before being diagnosed with multiple myeloma two and a half years ago. The only medication I am on is an anti-viral which I take twice a day. I hope both of you have similar results!
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Steve Mohr - Name: Steve Mohr
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: April 20 12
- Age at diagnosis: 56
Re: Autologous stem cell transplant scheduled
Thanks Steve. I have followed your posts carefully (I am a big basketball fan and your analogies were incredible) and am greatly encouraged by your recovery after your dark days. I am optimistic mine will go well. I have been on the anti-virals since I started chemo in early May.
Are you planning to do maintenance Revlimid? My local oncologist feels strongly about it, but the doctor who did my transplant consult in Seattle said she typically would not suggest it.
From all the posts and research I have seen here, I believe it prolongs remission. Thoughts?
Are you planning to do maintenance Revlimid? My local oncologist feels strongly about it, but the doctor who did my transplant consult in Seattle said she typically would not suggest it.
From all the posts and research I have seen here, I believe it prolongs remission. Thoughts?
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: Autologous stem cell transplant scheduled
Hi Cindy. I had my SCT at Johns Hopkins 4 years ago. The Hopkins oncologists told me I'd be on Revlimid as a maintenance drug, and my home oncologist concurred. I had a very hard time with it, even at a lower dose. Most months, I had to wait 3 - 4 weeks before my counts came back up high enough that I could take it again.
My oncologist eventually stopped it, and I went without any maintenance drugs for more than a year. That doesn't mean you'll have problems with it, too, of course, and it might work just fine for you.
Dana A
My oncologist eventually stopped it, and I went without any maintenance drugs for more than a year. That doesn't mean you'll have problems with it, too, of course, and it might work just fine for you.
Dana A
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Autologous stem cell transplant scheduled
Good luck with the transplant Cindy and thanks for volunteering to share your experiences through it. As Steve (our trailblazer) said, the dark days don't last for long, although it feels pretty long at the time, and the help, encouragement and good wishes that you receive here give you a lovely lift and warmth and the momentum to bide your time through an unpleasant boring couple of weeks until the new stem cells get going.
I look forward to reading your journey. Andy
I look forward to reading your journey. Andy
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MattSchtick - Name: Andy
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Feb27 2014
- Age at diagnosis: 61
Re: Autologous stem cell transplant scheduled
All the best with your upcoming SCT!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Autologous stem cell transplant scheduled
Wishing you the best in your journey, Cindy!
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: Autologous stem cell transplant scheduled
Cindy,
Thanks so much for planning to share your experience!
Thanks so much for planning to share your experience!
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Autologous stem cell transplant scheduled
Hi All, Good luck Cindy and Dano. I couldn't help myself from not chiming in. The Beacon is my lifeline. I never have experienced such caring and informative people in my life. Thank you for all your comments.
Cindy and Dano, you will get through this bump in the road and my thoughts and prayers will be with you.
Cindy and Dano, you will get through this bump in the road and my thoughts and prayers will be with you.
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