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Re: Mark's stem cell transplant adventure (SCCA)
Mark, hope all is progressing as planned and 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
Re: Mark's stem cell transplant adventure (SCCA)
Today I received my high dose melphalan. The chemo was all of 15 minutes, but there was about 5 hours of hydration. It was a long and fairly boring day. The hardest part may have been eating ice chips the entire time. Between the ice and the hydration I needed a few trips to the rest room. We broke up the monotony of ice with fruit popsicles, and apple juice and sport drink my wife froze in ice cube trays.
As of several hours later I'm exhausted. I've avoided nausea so far (knock wood). Unfortunately, my creatinine was slightly elevated, so they will infuse fluids tomorrow (so much for a day of rest).
My stem cell infusion is scheduled for Friday.
As of several hours later I'm exhausted. I've avoided nausea so far (knock wood). Unfortunately, my creatinine was slightly elevated, so they will infuse fluids tomorrow (so much for a day of rest).
My stem cell infusion is scheduled for Friday.
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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)
Best of luck to you Mark. Hope you can skate through it. Good luck.
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JPC - Name: JPC
Re: Mark's stem cell transplant adventure (SCCA)
Today was the big day, I'm told it's my second birthday. It was a long day in bed, mostly getting hydration before and after the infusion of the stem cells. The clinic infused 3 bags of cells (probably about 6.5 million cells, but I didn't ask).
Yesterday on my "day off" I was generally doing well, but did have my first bout of vomiting (without nausea, it just hit me almost instantly). Even so, I was able to get out and walk a few blocks to get some fresh air and exercise. Apparently the preservative the cells are in can cause nausea. It was suggested I cut an orange and sniff it during the induction. Well, during the first bag of cells, nausea won, but I was good the rest of the time.
It feels great to have this part of the journey complete. I know the short road ahead may be full of surprises, but I'm going to keep a positive attitude and get to the other side.
Picture: Frozen cells ready to warm and infuse:
Yesterday on my "day off" I was generally doing well, but did have my first bout of vomiting (without nausea, it just hit me almost instantly). Even so, I was able to get out and walk a few blocks to get some fresh air and exercise. Apparently the preservative the cells are in can cause nausea. It was suggested I cut an orange and sniff it during the induction. Well, during the first bag of cells, nausea won, but I was good the rest of the time.
It feels great to have this part of the journey complete. I know the short road ahead may be full of surprises, but I'm going to keep a positive attitude and get to the other side.
Picture: Frozen cells ready to warm and infuse:
- IMG_2741v2.jpg (80.29 KiB) Viewed 697 times
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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)
Day +2:
I'm feeling well this morning. I've been able to eat light meals and keep drinking. I seem to have the nausea under control now that I'm taking meds on a schedule as opposed to "as needed" since I wasn't getting any warning.
I'm continuing on IV fluids this weekend, but they set us up to do it at the apartment with a portable pump. This is much better than lying in the clinic bed for 4-5 hours. I've also been able to get out and walk a bit.
I know my numbers are still coming down and I expect it will be worse before it will be better, but right now I'm doing ok considering I'm working on a reboot of my entire system.
I'm feeling well this morning. I've been able to eat light meals and keep drinking. I seem to have the nausea under control now that I'm taking meds on a schedule as opposed to "as needed" since I wasn't getting any warning.
I'm continuing on IV fluids this weekend, but they set us up to do it at the apartment with a portable pump. This is much better than lying in the clinic bed for 4-5 hours. I've also been able to get out and walk a bit.
I know my numbers are still coming down and I expect it will be worse before it will be better, but right now I'm doing ok considering I'm working on a reboot of my entire system.
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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,
Thank you for posting your harvest and transplant experience. We should be starting within the month and it's good to know what can happen and what to expect. I'm sure as it gets closer, stress will make me forgetful, so good to read your journey now.
I wish you well.
Thank you for posting your harvest and transplant experience. We should be starting within the month and it's good to know what can happen and what to expect. I'm sure as it gets closer, stress will make me forgetful, so good to read your journey now.
I wish you well.
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
Re: Mark's stem cell transplant adventure (SCCA)
Mark, you will be out taking pictures again in no time.
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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)
Mark,
I'm recently diagnosed and currently being treated with Revlimid, Velcade, and dexamethasone. I'm told I'll be doing the autologous stem cell transplant sometime in October or November and, honestly, it's the only part of this whole thing that I'm freaked out about! You have no idea how helpful it has been for me to read about your experience as you go through it. I know what to prepare for and am no longer afraid of the unknown.
Thank you so much for sharing your experience. I'm pulling for you here in Phoenix!
I'm recently diagnosed and currently being treated with Revlimid, Velcade, and dexamethasone. I'm told I'll be doing the autologous stem cell transplant sometime in October or November and, honestly, it's the only part of this whole thing that I'm freaked out about! You have no idea how helpful it has been for me to read about your experience as you go through it. I know what to prepare for and am no longer afraid of the unknown.
Thank you so much for sharing your experience. I'm pulling for you here in Phoenix!
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Mark's stem cell transplant adventure (SCCA)
chadsnow,
When transplant was in front of me, I know I felt a lot like you, but I think as you understand it better, it becomes less "scary" and just part of treatment.
Day +5
Today is one week out from my high-dose melphalan. My blood counts continue to dip and yesterday showed I had become neutropenic. The doctor started me on antibiotics. I'm still getting a liter of IV fluids daily, but I'm able to do that at home. I'm still feeling generally ok, but extremely tired. Last night the expected diarrhea arrived. I have been able to eat small meals and drink fluids. I find not letting my stomach feel empty is best to avoid nausea.
It's early this morning and I have a blood draw and doctor visit ahead to see what today's adventure will be.
I think the most interesting part of this trip for me so far is expecting symptoms and otherwise "bad things" (low blood counts, bodily functions) to happen, know that it is "normal," and be somewhat relived that it is happening. If the treatment goes as expected, you hit the lows and then start recovering. The lows become a marking point of progress.
When transplant was in front of me, I know I felt a lot like you, but I think as you understand it better, it becomes less "scary" and just part of treatment.
Day +5
Today is one week out from my high-dose melphalan. My blood counts continue to dip and yesterday showed I had become neutropenic. The doctor started me on antibiotics. I'm still getting a liter of IV fluids daily, but I'm able to do that at home. I'm still feeling generally ok, but extremely tired. Last night the expected diarrhea arrived. I have been able to eat small meals and drink fluids. I find not letting my stomach feel empty is best to avoid nausea.
It's early this morning and I have a blood draw and doctor visit ahead to see what today's adventure will be.
I think the most interesting part of this trip for me so far is expecting symptoms and otherwise "bad things" (low blood counts, bodily functions) to happen, know that it is "normal," and be somewhat relived that it is happening. If the treatment goes as expected, you hit the lows and then start recovering. The lows become a marking point of progress.
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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)
Day +7
"Remarkably well" were the words from my physician's assistant today. I'll take that!
I'm still extremely tired. I seem to have the nausea under control. I don't have a great appetite, but I've been able to eat small portions, and graze a bit during the day. I've only lost about half a pound. I'm still receiving 1 liter of IV fluids daily at home.
All of my numbers indicate I'm staying well hydrated and have good kidney function, but the team seems set on keeping the extra hydration going. I'm generally able to drink about 2 liters a day, but is it getting challenging. Water tastes bitter, and frankly it is mentally exhausting to keep forcing myself to drink when I really don't feel like it.
I've had diarrhea for a couple days, but stool cultures show no infection, so I can begin taking Imodium (loperamide) to get some relief.
I feel very lucky to have so far (knock wood) avoided some of the severe effects I was prepared for.
We read a lot about the physical side effects and toll, but I also would comment on the mental effects. I'm exhausted; paying attention to so much information, reporting daily about what goes into and out of my body, waiting for reports and getting to appointments. The monotony of having limited freedom and living in an unfamiliar location is draining. Yesterday I just felt really rattled. I'm trying to focus on each day, know that I just need to work through that day and if it is a good day (and generally they have been) enjoy it.
"Remarkably well" were the words from my physician's assistant today. I'll take that!
I'm still extremely tired. I seem to have the nausea under control. I don't have a great appetite, but I've been able to eat small portions, and graze a bit during the day. I've only lost about half a pound. I'm still receiving 1 liter of IV fluids daily at home.
All of my numbers indicate I'm staying well hydrated and have good kidney function, but the team seems set on keeping the extra hydration going. I'm generally able to drink about 2 liters a day, but is it getting challenging. Water tastes bitter, and frankly it is mentally exhausting to keep forcing myself to drink when I really don't feel like it.
I've had diarrhea for a couple days, but stool cultures show no infection, so I can begin taking Imodium (loperamide) to get some relief.
I feel very lucky to have so far (knock wood) avoided some of the severe effects I was prepared for.
We read a lot about the physical side effects and toll, but I also would comment on the mental effects. I'm exhausted; paying attention to so much information, reporting daily about what goes into and out of my body, waiting for reports and getting to appointments. The monotony of having limited freedom and living in an unfamiliar location is draining. Yesterday I just felt really rattled. I'm trying to focus on each day, know that I just need to work through that day and if it is a good day (and generally they have been) enjoy it.
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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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