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Re: Mark's stem cell transplant adventure (SCCA)
Mark, I can understand. The process is hard enough, but away from home, so much harder. You sound like you are doing really well though. Just take each day as it comes and do what you need to that day. Day by day. Sending good thoughts.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Mark's stem cell transplant adventure (SCCA)
Day +10
My progress continues along. We keep telling the nurses we are striving to be the most boring patients in the transplant team.
I've produced a small number of white blood cells three days in a row. I take that as a good sign of progress. My platelets keep dipping and I've been penciled in for a transfusion the last two days, but so far I haven't dipped low enough.
This morning's big surprise was a wash cloth full of hair when I was washing up. I didn't really think I would avoid hair loss, but it was still a little disappointing when it started.
My appetite is still pretty light, but I've been able to eat little bits all day. I find "grazing" is the best to keep a little something on my stomach and avoid nausea.
My progress continues along. We keep telling the nurses we are striving to be the most boring patients in the transplant team.
I've produced a small number of white blood cells three days in a row. I take that as a good sign of progress. My platelets keep dipping and I've been penciled in for a transfusion the last two days, but so far I haven't dipped low enough.
This morning's big surprise was a wash cloth full of hair when I was washing up. I didn't really think I would avoid hair loss, but it was still a little disappointing when it started.
My appetite is still pretty light, but I've been able to eat little bits all day. I find "grazing" is the best to keep a little something on my stomach and avoid nausea.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: MarkW's stem cell transplant adventure (SCCA)
Yes, my husband found the grazing a good deal as well.
My husband got in the shower on Day 9 and his hair fell out in clumps when he washed it. By the time he got out of the shower most of it was gone. He was very balding on the top and kept it buzzed down pretty short anyway, but it it not the same as all gone. He never lost any hair on his body or his eyelashes. He had to shave way less though for awhile but now he has to shave again and you can see the beginnings of new hair growth on his head.
It will be 2 months tomorrow since his transplant. Hope you keep doing well.
My husband got in the shower on Day 9 and his hair fell out in clumps when he washed it. By the time he got out of the shower most of it was gone. He was very balding on the top and kept it buzzed down pretty short anyway, but it it not the same as all gone. He never lost any hair on his body or his eyelashes. He had to shave way less though for awhile but now he has to shave again and you can see the beginnings of new hair growth on his head.
It will be 2 months tomorrow since his transplant. Hope you keep doing well.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Mark's stem cell transplant adventure (SCCA)
Thanks for sharing these updates about your stem cell transplant experience, Mark. I've been reading them with a lot of interest, and I'm very glad to hear that the process has been going relatively smoothly for you. I hope you continue to do well.
Good luck!
Good luck!
Re: Mark's stem cell transplant adventure (SCCA)
Day +12
Celebration. I produced neutrophils. I was at zero for about 3 days, but today showed my first little bump. Obviously I'm still neutropenic, but this is such welcome news. Hopefully everything just keeps going up.
My appetite has been pretty light, but I've only lost 2 pounds. We've stuck with pretty soft and pretty bland foods. Today was a bit of watershed again when I had a small slice of ham with my eggs for dinner. Ham is one of my favorite foods and it was a real treat to eat it tonight.
I'm still very, very tired and sleeping a lot. I hope I start seeing some energy soon. But I won't rush things. I feel so lucky to have made it to Day 12 so easily, I won't rush things.
Celebration. I produced neutrophils. I was at zero for about 3 days, but today showed my first little bump. Obviously I'm still neutropenic, but this is such welcome news. Hopefully everything just keeps going up.
My appetite has been pretty light, but I've only lost 2 pounds. We've stuck with pretty soft and pretty bland foods. Today was a bit of watershed again when I had a small slice of ham with my eggs for dinner. Ham is one of my favorite foods and it was a real treat to eat it tonight.
I'm still very, very tired and sleeping a lot. I hope I start seeing some energy soon. But I won't rush things. I feel so lucky to have made it to Day 12 so easily, I won't rush things.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Mark's stem cell transplant adventure (SCCA)
Mark:
Great news! Hang in there! Very good chance that it will be down hill from this point. Good luck.
Great news! Hang in there! Very good chance that it will be down hill from this point. Good luck.
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JPC - Name: JPC
Re: Mark's stem cell transplant adventure (SCCA)
Congrats on the great progress!
Days 9-11 were our nadir and we were where you are now at Day +12. By Day +16 the line was out and we were on weekly visits.
You are past the "light in the tunnel" and will soon be back in the sun at the lake.
Just really good news.
Days 9-11 were our nadir and we were where you are now at Day +12. By Day +16 the line was out and we were on weekly visits.
You are past the "light in the tunnel" and will soon be back in the sun at the lake.
Just really good news.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Mark's stem cell transplant adventure (SCCA)
Day +14
I had this day marked on my calendar from the beginning since it seems like a pretty standard milepost. It's been a good day, but getting here wasn't easy.
Yesterday I had some rough GI issues in the morning and evening. It actually was one of my harder days.
Today I am MUCH better and there are signs my GI tract may be working its way back to normal. The big news is that I'm no longer neutropenic. I hit 580 neutrophils. Depending on my math, that means I was neutropenic 11 days. I'm sure based on this, and the other numbers slowing working their way up, the physicians assistant said I am engrafting.
I'm still doing home IV fluids with potassium. This really seems like the clinic's common practice. They will be cutting the dose in half (from 1 liter to ½ liter on Sunday)
On a lighter note, here in Seattle it is SeaFair weekend (hydroplane races, parades, etc). Each year the Blue Angels come to town and perform during the boat races. They practice several days before and today I got to go to our rooftop garden and watch them practice. This isn't something I'd get to see if I were home. (Always looking for the silver lining.)
I had this day marked on my calendar from the beginning since it seems like a pretty standard milepost. It's been a good day, but getting here wasn't easy.
Yesterday I had some rough GI issues in the morning and evening. It actually was one of my harder days.
Today I am MUCH better and there are signs my GI tract may be working its way back to normal. The big news is that I'm no longer neutropenic. I hit 580 neutrophils. Depending on my math, that means I was neutropenic 11 days. I'm sure based on this, and the other numbers slowing working their way up, the physicians assistant said I am engrafting.
I'm still doing home IV fluids with potassium. This really seems like the clinic's common practice. They will be cutting the dose in half (from 1 liter to ½ liter on Sunday)
On a lighter note, here in Seattle it is SeaFair weekend (hydroplane races, parades, etc). Each year the Blue Angels come to town and perform during the boat races. They practice several days before and today I got to go to our rooftop garden and watch them practice. This isn't something I'd get to see if I were home. (Always looking for the silver lining.)
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Mark's stem cell transplant adventure (SCCA)
Mark,
I am glad you are coming along. I am also glad you have had no high engraftment fever. My husband did and it landed him back in the hospital for a four-day stay. I am glad you are finding something about the time away from home as positive.
I am glad you are coming along. I am also glad you have had no high engraftment fever. My husband did and it landed him back in the hospital for a four-day stay. I am glad you are finding something about the time away from home as positive.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Mark's stem cell transplant adventure (SCCA)
Day +17
Yesterday I really felt like I turned a corner. Everything just started feeling much better. It helped that my wife and I celebrated our 34th wedding anniversary at my brother's home visiting some of our kids. It was a very nice day.
Today's blood tests show steady increase in all of my blood counts. I've been pulled off the anti-fungal med and antibiotics I've been taking. My GI seems to be getting much closer to normal. The best news came after my morning clinic. We got an email that said my schedule was cut back to only two blood draws and clinics per week. Wednesday and Thursday of this week will be the first days "off" since July 17. Yay!
Yesterday I really felt like I turned a corner. Everything just started feeling much better. It helped that my wife and I celebrated our 34th wedding anniversary at my brother's home visiting some of our kids. It was a very nice day.
Today's blood tests show steady increase in all of my blood counts. I've been pulled off the anti-fungal med and antibiotics I've been taking. My GI seems to be getting much closer to normal. The best news came after my morning clinic. We got an email that said my schedule was cut back to only two blood draws and clinics per week. Wednesday and Thursday of this week will be the first days "off" since July 17. Yay!
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
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