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Re: Mark's stem cell transplant adventure (SCCA)
So glad to hear this. You have done so 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)
Hi Mark,
Glad to hear that you've turned a corner. That's great news.
As I recovered from my stem cell transplant 3 years ago, for the most part I felt pretty good, getting a little better day by day. But every once in awhile, I'd have a day, like your turn-the-corner day, where I felt significantly better than the day before. It would be like a stair step up in how I felt, rather than a gradual incline. And I'd think to myself, "Wow. I thought I felt pretty good yesterday, but this is way better!"
You'll have a bunch of these days as you keep improving!
Mike
Glad to hear that you've turned a corner. That's great news.
As I recovered from my stem cell transplant 3 years ago, for the most part I felt pretty good, getting a little better day by day. But every once in awhile, I'd have a day, like your turn-the-corner day, where I felt significantly better than the day before. It would be like a stair step up in how I felt, rather than a gradual incline. And I'd think to myself, "Wow. I thought I felt pretty good yesterday, but this is way better!"
You'll have a bunch of these days as you keep improving!
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: Mark's stem cell transplant adventure (SCCA)
Day +21
It's been another very good week. I checked in with the clinic Tuesday and had the rest of the week off until this morning. I felt better each day. My appetite is getting better (I had a great meal Thursday night), and my GI and other functions seem to be getting much closer to normal. I've tapered off the anti-nausea meds.
All of the blood counts increased this week except neutrophils (I believe I've also seen this referred to as ANC) which plateaued a bit at 680. They said they see this at time with patients and they are not concerned, especially since all my other numbers, including white count, are moving well and closer to normal.
The IV fluids were stopped on Tuesday. They encouraged me to drink more, which I was able to do, and they are happy with my hydration and electrolytes today. They also dropped the potassium supplement today (yay, it's a horse pill).
My next clinic visit isn't until Wednesday when I have an exit consult with my doctor. I'm scheduled to have the central line pulled on Friday and then HOME.
I can't tell you how excited I am to see the light at the end of the tunnel. I know I have a good deal of recovery to go, but it is going to be so nice to do that in my home.
It's been another very good week. I checked in with the clinic Tuesday and had the rest of the week off until this morning. I felt better each day. My appetite is getting better (I had a great meal Thursday night), and my GI and other functions seem to be getting much closer to normal. I've tapered off the anti-nausea meds.
All of the blood counts increased this week except neutrophils (I believe I've also seen this referred to as ANC) which plateaued a bit at 680. They said they see this at time with patients and they are not concerned, especially since all my other numbers, including white count, are moving well and closer to normal.
The IV fluids were stopped on Tuesday. They encouraged me to drink more, which I was able to do, and they are happy with my hydration and electrolytes today. They also dropped the potassium supplement today (yay, it's a horse pill).
My next clinic visit isn't until Wednesday when I have an exit consult with my doctor. I'm scheduled to have the central line pulled on Friday and then HOME.
I can't tell you how excited I am to see the light at the end of the tunnel. I know I have a good deal of recovery to go, but it is going to be so nice to do that in my home.
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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)
So glad to hear. Yeah! I know you and your wife will be glad to get home.
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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)
Congratulations, Mark!
I share the same with you as my loved one is in the same boat with Day +19. Her numbers are coming back as well. She had a little hard time with diarrhea and vomiting, otherwise it was a nice recovery. She started grafting actually on Day +9 and now her numbers are very close to normal. Yes, neutrophils are the last one to become normal in WBC followed by gradual increase in RBC.
I would be very interested to know how your FLC (kappa and lambda) are after the transplant.
Looking forward to sharing your experience with ours and anyone in this transition new or past.
I share the same with you as my loved one is in the same boat with Day +19. Her numbers are coming back as well. She had a little hard time with diarrhea and vomiting, otherwise it was a nice recovery. She started grafting actually on Day +9 and now her numbers are very close to normal. Yes, neutrophils are the last one to become normal in WBC followed by gradual increase in RBC.
I would be very interested to know how your FLC (kappa and lambda) are after the transplant.
Looking forward to sharing your experience with ours and anyone in this transition new or past.
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Concerned Dad - Name: Concerned Dad
- Who do you know with myeloma?: My love
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 52
Re: Mark's stem cell transplant adventure (SCCA)
Concerned Dad:
Glad to hear it's going well for you too. I haven't seen any of those types of numbers yet as I don't think they've included them in testing. I've always thought they were mostly monitoring my recovery from transplant and not looking at the myeloma yet.
Glad to hear it's going well for you too. I haven't seen any of those types of numbers yet as I don't think they've included them in testing. I've always thought they were mostly monitoring my recovery from transplant and not looking at the myeloma yet.
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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)
My husband's doctor said he will evaluate the success of the stem cell transplant on the myeloma at around Day +90. His blood draws so far have been just to check on stem cell transplant recovery as you said, Mark.
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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)
It was comforting going back and reading your journey. I have just begun, doing chemo (pills at home) each week, plus the hospital visit . Spent 4 weeks in hospital before I was able to start home care. I am in the second week of my 3 cycles.
I'm going to really have to bone up on all the names of meds and how to read all the reports. I'm not sure if I'm using the correct names for procedures yet. I must say there is a lot of "stuff" that has come up suddenly to try and put in place. I feel lost and inadequate some times.
For all who have come as far as you have and have shared your journey, I thank you all. You have encouraged me. A friend told me this is my "new job" . It's time to dive in and start being proactive.
I'm going to really have to bone up on all the names of meds and how to read all the reports. I'm not sure if I'm using the correct names for procedures yet. I must say there is a lot of "stuff" that has come up suddenly to try and put in place. I feel lost and inadequate some times.
For all who have come as far as you have and have shared your journey, I thank you all. You have encouraged me. A friend told me this is my "new job" . It's time to dive in and start being proactive.
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19pops57 - Name: Steve
- Who do you know with myeloma?: Fellow worker
- When were you/they diagnosed?: July 2016
- Age at diagnosis: 58
Re: Mark's stem cell transplant adventure (SCCA)
Day +26
I met with my doctor today. I don't know what else to say - we were cleared to go home and I couldn't get here fast enough. Best. Nap. Ever. In my own bed.
Actually, I don't have much else to report. Since last Friday, I get better each day. My appetite and GI are maybe 75%. I'm still fatigued a great deal, but better each day. Friday I developed a minor fungal infection. I was given a powder to deal with it. Today talking to the doctor he didn't seem surprised or worried about it. It is clearing up without much trouble.
I will get a blood panel Friday to see how well I'm at producing cells. My Hickman line gets removed Friday. Thank goodness (hot shower scheduled Saturday)
I'm released from the transplant unit and returned to my myeloma doctor next week. Ironically, my myleoma doctor rotated into the transplant team last week, so I also saw him today. He was very happy with the pre-transplant biopsy. I misreported the results here saying there was 3% cancer. In fact, it was 3% plasma overall and 0.11% abnormal cells (he said that number is always underestimated, but it is still a small fractional number)
19pops57 - It is all pretty overwhelming at first. You'll be surprised how fast you learn. The Beacon forum and the people here are a GREAT resource.
I met with my doctor today. I don't know what else to say - we were cleared to go home and I couldn't get here fast enough. Best. Nap. Ever. In my own bed.
Actually, I don't have much else to report. Since last Friday, I get better each day. My appetite and GI are maybe 75%. I'm still fatigued a great deal, but better each day. Friday I developed a minor fungal infection. I was given a powder to deal with it. Today talking to the doctor he didn't seem surprised or worried about it. It is clearing up without much trouble.
I will get a blood panel Friday to see how well I'm at producing cells. My Hickman line gets removed Friday. Thank goodness (hot shower scheduled Saturday)
I'm released from the transplant unit and returned to my myeloma doctor next week. Ironically, my myleoma doctor rotated into the transplant team last week, so I also saw him today. He was very happy with the pre-transplant biopsy. I misreported the results here saying there was 3% cancer. In fact, it was 3% plasma overall and 0.11% abnormal cells (he said that number is always underestimated, but it is still a small fractional number)
19pops57 - It is all pretty overwhelming at first. You'll be surprised how fast you learn. The Beacon forum and the people here are a GREAT resource.
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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)
Oh happy day! In the words of Dorothy: There is not place like home! Congrats! Glad you are 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
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