Mark11 - My brother in law told me I should submit an article about all transplants being the cure for hot flashes in women ...
Day 14
Still on regularly scheduled anti-nausea meds 24 hours a day. The doctor said that should improve when the white cells start to grow. Interesting, my platelets have come "roaring back" (his words), which is unusual to be the leader of the pack. He indicated that they are likely because of my donation, and I will take any signs of engraftment.
At about day 30 they will do chimerism tests to see how much of my cells and marrow have my brother's DNA.
The most frustrating side effect beyond nausea is being puffed up like a marshmallow. It is worst in the morning. I elevated the foot of my bed last night, which helped my feet, but I still can't close my hands to make a fist. The medical advice on this is to be patient.
It was 75 and sunny yesterday in Seattle, so I took a short walk to start getting my strength back.
Cindy
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: My mini-allo transplant journey
Thank you so much for your update, Cindy. I have been wondering how you have been doing. I'm sorry to hear that nausea is still plaguing you, but it's great that you were able to go out for a walk and enjoy the spring weather.
I hope your recovery continues to go well and that your chimerism test results are really, REALLY positive.
Good luck!
I hope your recovery continues to go well and that your chimerism test results are really, REALLY positive.
Good luck!
Re: My mini-allo transplant journey
Hello Cindy,
I've been reading about your transplant journey and wanted to let you know that I really appreciate your sharing the details of it with everyone here in the forum. I hope you are doing well, and that you are getting stronger and healthier each and every day.
I've been reading about your transplant journey and wanted to let you know that I really appreciate your sharing the details of it with everyone here in the forum. I hope you are doing well, and that you are getting stronger and healthier each and every day.
Re: My mini-allo transplant journey
Day 21
Still dealing with nausea / vomiting / diarrhea. I gave up on Zofran and am on regularly scheduled Ativan with Compazine in between. Most of the time it works, but not always. I'm nut hungry, so getting enough calories is tough. With MMF (taken three times a day), you can have dairy two hours before or two hours after each dose. That really limits the options from what tastes palatable right now.
I am still experiencing the swelling in my legs, although my arms and hands are better. My doses of cyclosporine and sirolimus were both decreased yesterday, and I hope that helps. My hands and feet still feel like they are burning
I am trying to do even a short walk every day, but it is much tougher than after the autologous SCT. I am sure some of it is my flu, but really my body wasn't recovered going into the second transplant (that was the idea).
More waiting for symptoms to improve and we will get some actual engraftment numbers next week, which is good. My cell count numbers have improved slightly, but the doctors would have expected faster.
Still dealing with nausea / vomiting / diarrhea. I gave up on Zofran and am on regularly scheduled Ativan with Compazine in between. Most of the time it works, but not always. I'm nut hungry, so getting enough calories is tough. With MMF (taken three times a day), you can have dairy two hours before or two hours after each dose. That really limits the options from what tastes palatable right now.
I am still experiencing the swelling in my legs, although my arms and hands are better. My doses of cyclosporine and sirolimus were both decreased yesterday, and I hope that helps. My hands and feet still feel like they are burning
I am trying to do even a short walk every day, but it is much tougher than after the autologous SCT. I am sure some of it is my flu, but really my body wasn't recovered going into the second transplant (that was the idea).
More waiting for symptoms to improve and we will get some actual engraftment numbers next week, which is good. My cell count numbers have improved slightly, but the doctors would have expected faster.
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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
Hi Cindy,
I have been reading about your 'mini allo' journey also. I am sorry to hear that the side effects of the treatments are quite severe. When you say that it is difficult to get in a short walk, would you consider leaning on a 'walker', such as an Evolution walker, to get about? That type of walker is wheeled, and I used one back when I had a lot of pain from fractures, temporarily. At least one can walk around, and get balance and stability from holding onto the handles of the walker. I used it indoors and outdoors, for a few months. I am sure that there would be some available at the cancer centre for patients to use.
Good luck with this journey, and hope you are feeling better soon!
I have been reading about your 'mini allo' journey also. I am sorry to hear that the side effects of the treatments are quite severe. When you say that it is difficult to get in a short walk, would you consider leaning on a 'walker', such as an Evolution walker, to get about? That type of walker is wheeled, and I used one back when I had a lot of pain from fractures, temporarily. At least one can walk around, and get balance and stability from holding onto the handles of the walker. I used it indoors and outdoors, for a few months. I am sure that there would be some available at the cancer centre for patients to use.
Good luck with this journey, and hope you are feeling better soon!
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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: My mini-allo transplant journey
When I was in for my auto-SCT, I found that Compazine did next to nothing for the nausea. Ativan was the only thing that worked.
Hang in there, Cindy - there are better days ahead!
Hang in there, Cindy - there are better days ahead!
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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,
I hope things are improving for you. Positive energy being sent your way.
Mark
I hope things are improving for you. Positive energy being sent your way.
Mark
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Mark11
Re: My mini-allo transplant journey
Day 29
Ah, the perpetual roller coaster.
I started to feel more tired and slightly out of breath over the weekend. Ny numbers were increasing beautifully, so the suggested treatment was more IV electrolytes and less cyclosporine. I showed up for my afternoon BMB and they decided my oxygen levels were too low. I went straight through to the the transplant floor and, after two doses of Lasix (furosemide), feel better. It was terrifying for me not being able to breath. Things got settled by bedtime and I was able to sleep. My husband had just flown back to California on Sunday afternoon, so he flew out again on Monday.
Yesterday morning, which should have been my celebratory Day 28, only graced me with a few hours of comfort before the hell began. Between the transplant docs, pulmonologists, respiratory team, nephrology, and cardiology, it was decided that I am fighting a cytokine storm where basically my new white cells are breaking down my new red cells. This causes a strong inflammatory response.
They decided late afternoon on a continuous Lasix drip In hopes of getting all the fluid out of the lungs so that my ejection fraction might move. At 3 a.m. they informed me that, while a lot of fluid was off, it was making my kidneys mad, and so they are discussing next steps with ICU.
For those inclined, please keep me in your thoughts and prayers.
Ah, the perpetual roller coaster.
I started to feel more tired and slightly out of breath over the weekend. Ny numbers were increasing beautifully, so the suggested treatment was more IV electrolytes and less cyclosporine. I showed up for my afternoon BMB and they decided my oxygen levels were too low. I went straight through to the the transplant floor and, after two doses of Lasix (furosemide), feel better. It was terrifying for me not being able to breath. Things got settled by bedtime and I was able to sleep. My husband had just flown back to California on Sunday afternoon, so he flew out again on Monday.
Yesterday morning, which should have been my celebratory Day 28, only graced me with a few hours of comfort before the hell began. Between the transplant docs, pulmonologists, respiratory team, nephrology, and cardiology, it was decided that I am fighting a cytokine storm where basically my new white cells are breaking down my new red cells. This causes a strong inflammatory response.
They decided late afternoon on a continuous Lasix drip In hopes of getting all the fluid out of the lungs so that my ejection fraction might move. At 3 a.m. they informed me that, while a lot of fluid was off, it was making my kidneys mad, and so they are discussing next steps with ICU.
For those inclined, please keep me in your thoughts and prayers.
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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-
I'm sending you lots of love and healing while you move through this latest storm. You've made it this far, and I know that you have the power within you to continue to conquer the hurdles that appear in your path.
Lots of love and prayers,
Nancy in Phila
I'm sending you lots of love and healing while you move through this latest storm. You've made it this far, and I know that you have the power within you to continue to conquer the hurdles that appear in your path.
Lots of love and prayers,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: My mini-allo transplant journey
Thank you for the update, Cindy. I'm sorry that you've hit such a rough patch. I'll be joining Nancy and Mark in thinking of you and sending lots of well wishes your way.
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