Best of luck to you, Steve.
I am so on the fence about a SCT, as I watched my mother struggle with Melanoma for five years and I remember her telling me how important it was for her to have quality of life, versus quantity of life.
I know we all want to live a long and fruitful life, but where does one draw the line at living and being sick and living and feeling well?
Looking forward to reading your thoughts while you are on this journey with multiple myeloma. Really hope it is well worth it for you and you end up convincing me to make the right choice, whatever that may be, down the not too distant road (I am going to the Mayo Clinic in Rochester, MN., mid August, and will make my final decision on what my plans are to deal with my multiple myeloma).
Forums
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Steve Mohr's Stem Cell Transplant
I think it's brave of you to post while going thru this. I certainly couldn't have. I was pretty out of till around day 11 and then my numbers starting going up. I walked a little everyday, but mostly just slept or dozed off in between running to the bathroom! Best to you.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: Steve Mohr's Stem Cell Transplant
Hi Steve,
It's good to hear from you. You are strong. You've made it through a very rough patch. First things first. Take care of you and how you feel. Thanks for sharing!
It's good to hear from you. You are strong. You've made it through a very rough patch. First things first. Take care of you and how you feel. Thanks for sharing!
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Steve Mohr's Stem Cell Transplant
Thank you for sharing, I will be having my transplant next week. I appreciate you posting the experience you have been through. Sounds like you are heading in the right direction. Good Luck!
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Clayton
Re: Steve Mohr's Stem Cell Transplant
Hi Steve,
Glad to hear the light at the end of the tunnel is starting to glow brighter. May that continue each day. I appreciate your efforts and feedback from others as I wait for my SCT. Trying to keep fit and healthy and was expecting a walk in the park. Sounds like it's going to be a walk on the wild side! Hmmm ...
Glad to hear the light at the end of the tunnel is starting to glow brighter. May that continue each day. I appreciate your efforts and feedback from others as I wait for my SCT. Trying to keep fit and healthy and was expecting a walk in the park. Sounds like it's going to be a walk on the wild side! Hmmm ...
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
Re: Steve Mohr's Stem Cell Transplant
I am glad to hear from you. I had a stem cell transplant last July. In fact, my new birthday is July 19. I too remember the extreme sickness and multiple trips to the bathroom -- many of which I did not make. Prayers for you and your journey.
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Julie Phillips
Re: Steve Mohr's Stem Cell Transplant
Steve,
The first week or two are the hardest in my memory. Then boredom sets in! You want to do stuff, like walk, but your body says: No way Jose! The nausea starts to lessen. My appetite got better, but the bland diet was the pits. I craved spicy food like no tomorrow.
But I've been in remission now for 2 years, so it was worth it! It was not all that bad. My stem cell transplant was with my own cells. I don't know if the donor transplant is different in regards to medications or time in isolation.
I hope you are feeling better. And that your numbers continue to improve.
Best wishes.
The first week or two are the hardest in my memory. Then boredom sets in! You want to do stuff, like walk, but your body says: No way Jose! The nausea starts to lessen. My appetite got better, but the bland diet was the pits. I craved spicy food like no tomorrow.
But I've been in remission now for 2 years, so it was worth it! It was not all that bad. My stem cell transplant was with my own cells. I don't know if the donor transplant is different in regards to medications or time in isolation.
I hope you are feeling better. And that your numbers continue to improve.
Best wishes.
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Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54
Re: Steve Mohr's Stem Cell Transplant
We are all thinking about you, Steve. Best wishes through this difficult time!
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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: Steve Mohr's Stem Cell Transplant
Steve,
This is some great information that you are so gracious to give all of us with myeloma. even the things that don't go so well during your hospital stay are also really important to me. I have my first visit with my future transplant hospital (USC, 200 miles away) on July 7th. I am more concerned about the nasty traffic down there than the visit itself. I am looking forward to the visit actually. I read one reply from tropicdiver.
I am kind of on the fence also about the transplant thing. No problem giving my bone marrow for storing until needed. But would like to possibly do a transplant in a couple of years. And stay on this path of Revlimid and Dexamethasone till then. I am ok with these drugs. no big side effects after 5 months.
My biggest issue is that I have to wait to get my Zometa treatments due to dental issues. Also I am just a few years away from a possible retirement if I continue to work a few more years. I have been off work for 5 months due to an injury and would most likely loose my job if I should have a transplant within the next year and take more time off. Even after 22 years at my job they will only put up with so much.
So all this input from your personal experience is so important to all of us and I can't thank you enough. I know that you must be tired and it's hard to reply to everyone and that's fine. Your post are what's important. post when you're up to it.
Stay Positive and God Bless
George
This is some great information that you are so gracious to give all of us with myeloma. even the things that don't go so well during your hospital stay are also really important to me. I have my first visit with my future transplant hospital (USC, 200 miles away) on July 7th. I am more concerned about the nasty traffic down there than the visit itself. I am looking forward to the visit actually. I read one reply from tropicdiver.
I am kind of on the fence also about the transplant thing. No problem giving my bone marrow for storing until needed. But would like to possibly do a transplant in a couple of years. And stay on this path of Revlimid and Dexamethasone till then. I am ok with these drugs. no big side effects after 5 months.
My biggest issue is that I have to wait to get my Zometa treatments due to dental issues. Also I am just a few years away from a possible retirement if I continue to work a few more years. I have been off work for 5 months due to an injury and would most likely loose my job if I should have a transplant within the next year and take more time off. Even after 22 years at my job they will only put up with so much.
So all this input from your personal experience is so important to all of us and I can't thank you enough. I know that you must be tired and it's hard to reply to everyone and that's fine. Your post are what's important. post when you're up to it.
Stay Positive and God Bless
George
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Steve Mohr's Stem Cell Transplant
Steve,
The worse part is starting to end, and you're right -- nothing to be embarrassed about, the nurses expect that. They have great people to handle that job, same for the PCAs.
Get up and start moving as much as you can. That will help. You may not think so, but it does wonders for you.
Remember, keep the button handy (if you haven't burned it up already)!
The worse part is starting to end, and you're right -- nothing to be embarrassed about, the nurses expect that. They have great people to handle that job, same for the PCAs.
Get up and start moving as much as you can. That will help. You may not think so, but it does wonders for you.
Remember, keep the button handy (if you haven't burned it up already)!
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Jack
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