Hello, Cindy.
Keeping you in my thoughts. Hold on. You will get through this.
Olga
Forums
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OlgaMM - Name: OMS
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2008 - SMM, 2015 - multiple myeloma
- Age at diagnosis: 53
Re: My mini-allo transplant journey
Hi Cindy,
I'm following your posts, thinking of you, and hope things very much improve soon for you.
Best wishes,
Laura
I'm following your posts, thinking of you, and hope things very much improve soon for you.
Best wishes,
Laura
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LauraScot - Name: Laura
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 47
Re: My mini-allo transplant journey
Oh my gosh, Cindy, I hope things get better for you! I'm thinking about you!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: My mini-allo transplant journey
Beaming all the best thoughts your way Cindy! I hope this is a very short-lived bump in the road for you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My mini-allo transplant journey
Cindy - Sorry to see you had this setback. I hope that you are already turning the corner. Sending you lots of positive thoughts and wishes!
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: My mini-allo transplant journey
Yikes, Cindy!
Add me to the big list of people pulling for you and sending good wishes!
I'm impressed that you were able to post to the Forum yesterday with all that was going on.
Here's hoping Day 30 and beyond is a lot better for you!
Mike
Add me to the big list of people pulling for you and sending good wishes!
I'm impressed that you were able to post to the Forum yesterday with all that was going on.
Here's hoping Day 30 and beyond is a lot better for you!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: My mini-allo transplant journey
Count me in as another who has you in his thoughts, Cindy. I very much hope these latest issues resolve quickly and that they're the last serious problems you encounter with this process.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: My mini-allo transplant journey
Hi Cindy,
Definitely not the update I was hoping to see. The amount of positive energy / prayers are being doubled.
Mark
Definitely not the update I was hoping to see. The amount of positive energy / prayers are being doubled.
Mark
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Mark11
Re: My mini-allo transplant journey
Day 39
I was released from the hospital yesterday with a whole host of additional medications. The team feels the cytokine storm is what put me into congestive heart failure. With Lasix, they were able to get fluid off my lungs. My kidney and liver function are improving and, after about 8 days, I no longer required additional oxygen. It was a very scary period for a few days.
The GI biopsies came back with mild GVHD of the gut, so I am drinking one steroid to coat my esophagus and stomach. The goals is to reduce the nausea so they can further tweak the other regimen. I am responding differently than they would have expected in terms of cyclosporine and sirolimus, and those drugs are being tapered a little. I am also on high-dose steroid burst (60 mg), which I hope they taper quickly because it makes me feel jittery all the time. The doctors say I may be overly suppressed, so medication management is an art now.
I will follow up with cardiology also to see if my ejection fraction will improve on its own. So far, I would say this process has been more challenging than the ASCT. I am trying hard to focus on the day-to-day and not waiting for the other shoe to drop. As I have mentioned, GVHD can be a lifelong battle, so hopefully it stays manageable.
My bone marrow biopsy was delayed by the 12 days in the hospital, but I assume it will be scheduled in the next two weeks.
Thanks for all the encouragement!
I was released from the hospital yesterday with a whole host of additional medications. The team feels the cytokine storm is what put me into congestive heart failure. With Lasix, they were able to get fluid off my lungs. My kidney and liver function are improving and, after about 8 days, I no longer required additional oxygen. It was a very scary period for a few days.
The GI biopsies came back with mild GVHD of the gut, so I am drinking one steroid to coat my esophagus and stomach. The goals is to reduce the nausea so they can further tweak the other regimen. I am responding differently than they would have expected in terms of cyclosporine and sirolimus, and those drugs are being tapered a little. I am also on high-dose steroid burst (60 mg), which I hope they taper quickly because it makes me feel jittery all the time. The doctors say I may be overly suppressed, so medication management is an art now.
I will follow up with cardiology also to see if my ejection fraction will improve on its own. So far, I would say this process has been more challenging than the ASCT. I am trying hard to focus on the day-to-day and not waiting for the other shoe to drop. As I have mentioned, GVHD can be a lifelong battle, so hopefully it stays manageable.
My bone marrow biopsy was delayed by the 12 days in the hospital, but I assume it will be scheduled in the next two weeks.
Thanks for all the encouragement!
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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: My mini-allo transplant journey
Cindy:
Thank you very much for the update. I understand that everything is not yet wine and roses. However, it does sound like progress. Godspeed and get well soon.
Thank you very much for the update. I understand that everything is not yet wine and roses. However, it does sound like progress. Godspeed and get well soon.
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JPC - Name: JPC
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