Day +28
Thankfully my central line was removed today. It was very uneventful. I'm looking forward to a long hot shower tomorrow.
My blood counts continue to climb, but are still not "normal." Of note, my neutrophils (ANC) are back to the normal minimum. My hematocrit is still a bit below normal, but getting so close.
Feeling as well as I do, and being home, the hardest thing to do is remember I need to take it easy and be careful. I want to do everything I did before, but I can't. Soon.
Forums
-
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)
You are over the hill and starting down the other side. 
-
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)
Hope you are still continuing to do well.
-
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 +32
Today I met with my regular hematologist, physician assistant, and nurse. It was great to get back with people we felt so comfortable with (the transplant team was great too, but this is the team fighting myeloma with me for a year).
My blood tests look great. Both my white and red blood counts are just a fraction below the "normal minimum" My hematocrit is 40 and above the average minimum. In fact, that is as high as it has been since July 2015. My neutrophils (ANC) are 2.05 and "normal". My platelets are at 160, above the average minimum. I'm feeling better every day.
As I've said before, I'm considered a "high risk" patient because of my del(17p) abnormality. Because of this, my doctor wants to take an aggressive approach to maintenance, regardless of my level of response following the transplant. This means starting maintenance before 90-100 days, probably day 45, and administering Pomalyst, Kyprolis, and dex again. The doses will be adjusted to accommodate my tolerance and to give me a small break on the schedule. I will also have a port installed tomorrow to ease all the blood draws and infusions.
Mentally I'm doing well and celebrating how well I did in the transplant. I know other myeloma patients will relate to the nagging gremlin in the back of my head; "I'm not 'done' and I won't ever be 'done.'" It isn't a strong emotion, but it is there and now that I've moved past the transplant I see that I'm at a different point of my new normal and I need to deal with this.
Today I met with my regular hematologist, physician assistant, and nurse. It was great to get back with people we felt so comfortable with (the transplant team was great too, but this is the team fighting myeloma with me for a year).
My blood tests look great. Both my white and red blood counts are just a fraction below the "normal minimum" My hematocrit is 40 and above the average minimum. In fact, that is as high as it has been since July 2015. My neutrophils (ANC) are 2.05 and "normal". My platelets are at 160, above the average minimum. I'm feeling better every day.
As I've said before, I'm considered a "high risk" patient because of my del(17p) abnormality. Because of this, my doctor wants to take an aggressive approach to maintenance, regardless of my level of response following the transplant. This means starting maintenance before 90-100 days, probably day 45, and administering Pomalyst, Kyprolis, and dex again. The doses will be adjusted to accommodate my tolerance and to give me a small break on the schedule. I will also have a port installed tomorrow to ease all the blood draws and infusions.
Mentally I'm doing well and celebrating how well I did in the transplant. I know other myeloma patients will relate to the nagging gremlin in the back of my head; "I'm not 'done' and I won't ever be 'done.'" It isn't a strong emotion, but it is there and now that I've moved past the transplant I see that I'm at a different point of my new normal and I need to deal with this.
-
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)
Hope you are coming along well. We are in the middle of my husband's Day +90 evaluation test. He had x-rays yesterday. Collecting 24-hour urine today with blood draws and repeat bone marrow tomorrow. We go on the 14th to find out results and how we will proceed from here. He is feeling really well and pretty much is back to doing his usual stuff, Maybe to bed earlier .. .LoL. Wish the same for you.
-
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 +42
I'm still doing really well. About the only lingering effects of my stem cell transplant are my continued lack of energy (but that has improved a lot) and my very thin hair (I was lucky in that it came out fairly evenly, so now I just look like I have a close crop).
My Tuesday blood tests were still very good. Only my red cell count is still a fraction below the normal minimum. Everything else looks great.
The best news; I have more then a week between doctor's visits, giving me the opportunity to come to the lake to rest and recover. This has been the best medicine yet.
I'm still doing really well. About the only lingering effects of my stem cell transplant are my continued lack of energy (but that has improved a lot) and my very thin hair (I was lucky in that it came out fairly evenly, so now I just look like I have a close crop).
My Tuesday blood tests were still very good. Only my red cell count is still a fraction below the normal minimum. Everything else looks great.
The best news; I have more then a week between doctor's visits, giving me the opportunity to come to the lake to rest and recover. This has been the best medicine yet.
- boating-v2.jpg (71.4 KiB) Viewed 680 times
-
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)
Congratulations, Mark. Great to hear that you're doing so well. Hope your numbers stay as they are, or get even better.
Re: Mark's stem cell transplant adventure (SCCA)
Glad you are doing well.
-
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 +44
I don't have enough energy to make it across the lake, but this felt GREAT for Day 44.
I don't have enough energy to make it across the lake, but this felt GREAT for Day 44.
- IMG_2440v2.jpg (118.35 KiB) Viewed 602 times
-
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,
So glad that you're doing so well and that you've avoided a lot of the problems that I've read about others having. Sharing your experience has prepared me for my upcoming transplant. I'm trying to decide whether to do the transplant inpatient or from home with daily clinic visits (I live about 30 minutes from Mayo Clinic). Any recommendations?
Thanks again so much for sharing your story.
So glad that you're doing so well and that you've avoided a lot of the problems that I've read about others having. Sharing your experience has prepared me for my upcoming transplant. I'm trying to decide whether to do the transplant inpatient or from home with daily clinic visits (I live about 30 minutes from Mayo Clinic). Any recommendations?
Thanks again so much for sharing your story.
-
chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Return to Treatments & Side Effects