Thank you Cathy. I hope you and hubby had a great holiday.
My Thanksgiving was very special this year given all that has occurred in 2016. We always have a house full, and this year was no different, but there was an overwhelming feeling of gratitude. I really appreciate what a wonderful family I have.
Forums
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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 +129-130
I learned a lesson about the the new "normal" on Day +129. All day I felt a bit more fatigued than normal and just kind of "blah". By 6 p.m. I noticed I was running a fever of 99.7 F (37.6 C). An hour later it was 99.9 F (37.7 C) and by 9:20 I hit the magic number of 100.9 F (38.3 C). Magic because that is the point my doctors say I MUST call in. I did and was directed to the ER associated with the cancer clinic because they have my records. That meant an hour drive to the ER. We got there about 10:30 p.m.
Of course, by the time we arrived, my fever had broken and it was back to normal. Still, I underwent a battery of labs and a chest x-ray to be sure there wasn't something that needed immediate attention.
There wasn't, I was sent home at 3 a.m.
I'm happy it turned out to be nothing (maybe a virus they say), and I know others here have had much worse experiences in their recovery. Still, this was my first time reacting to the new requirements of my health condition, and it wasn't very fun.
I learned a lesson about the the new "normal" on Day +129. All day I felt a bit more fatigued than normal and just kind of "blah". By 6 p.m. I noticed I was running a fever of 99.7 F (37.6 C). An hour later it was 99.9 F (37.7 C) and by 9:20 I hit the magic number of 100.9 F (38.3 C). Magic because that is the point my doctors say I MUST call in. I did and was directed to the ER associated with the cancer clinic because they have my records. That meant an hour drive to the ER. We got there about 10:30 p.m.
Of course, by the time we arrived, my fever had broken and it was back to normal. Still, I underwent a battery of labs and a chest x-ray to be sure there wasn't something that needed immediate attention.
There wasn't, I was sent home at 3 a.m.
I'm happy it turned out to be nothing (maybe a virus they say), and I know others here have had much worse experiences in their recovery. Still, this was my first time reacting to the new requirements of my health condition, and it wasn't very fun.
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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 +180
Today is a milepost day of sorts and I thought I take a moment to post an update for anyone that follows this thread or looks at it in the future.
It is hard to believe I'm 6 months post transplant. Sometimes it seems like yesterday, other times it feels like it didn't really happen.
I started aggressive maintenance therapy in September 2016 and I've completed 5 cycles since. I'm currently receiving a "half-dose" of Kyprolis, Pomalyst, and dexamethasone (KPD) as compared to the dose I received in initial induction. I've had very little issues with this, only some continued fatigue. We have actually seen a response to treatment. My post transplant biopsy showed a very small, nearly immeasurable, number of abnormal cells. My blood work, however, showed an M-spike of 0.3 g/dL (3 g/l). My last SPEP test on December 31 showed an M-spike of only 0.1 g/dL.
Since coming home I made one trip to the ER for an unexplained fever. The fever had broken by the time I was seen and I was sent home. I've been basically healthy at all other times.
I was weak when I returned home and I'm still not back to my pre-transplant condition. Not that that condition was optimal. I'm working hard to exercise regularly and eat better. Last week I started seeing a physical therapist at my cancer center so that I can begin incorporating exercises that will account for my back issues and other bone issues (none too serious, but I don't want to risk injury).
It's flu season and I've been very careful about avoiding sick people at home and work. Since I've been doing this a while, it is starting to feel like habit, and I'm not having to think so hard about it anymore. I'm sure I could afford to be more careful, but I think I'm being prudent most of the time.
Passing 6 months I'm now able to go to "water zumba" with my wife at our local health club. I did that on Monday and it was great to be back. I like the water exercise because it is so low impact and still a good work out. I'm one of the only men there, but I'm ok with that.
One final note, my hair has completely returned. Where once I had thin and very straight hair, I now have full curly hair. I don't know if this will last, but I'm taking advantage of it for now. I didn't let my hair stylist cut it off last week so I can see how curly it will get.
Overall, I feel great and hope this new phase lasts a very long time. To anyone that reads this thread in preparation for your own transplant, I wish you all the luck in the world.
Today is a milepost day of sorts and I thought I take a moment to post an update for anyone that follows this thread or looks at it in the future.
It is hard to believe I'm 6 months post transplant. Sometimes it seems like yesterday, other times it feels like it didn't really happen.
I started aggressive maintenance therapy in September 2016 and I've completed 5 cycles since. I'm currently receiving a "half-dose" of Kyprolis, Pomalyst, and dexamethasone (KPD) as compared to the dose I received in initial induction. I've had very little issues with this, only some continued fatigue. We have actually seen a response to treatment. My post transplant biopsy showed a very small, nearly immeasurable, number of abnormal cells. My blood work, however, showed an M-spike of 0.3 g/dL (3 g/l). My last SPEP test on December 31 showed an M-spike of only 0.1 g/dL.
Since coming home I made one trip to the ER for an unexplained fever. The fever had broken by the time I was seen and I was sent home. I've been basically healthy at all other times.
I was weak when I returned home and I'm still not back to my pre-transplant condition. Not that that condition was optimal. I'm working hard to exercise regularly and eat better. Last week I started seeing a physical therapist at my cancer center so that I can begin incorporating exercises that will account for my back issues and other bone issues (none too serious, but I don't want to risk injury).
It's flu season and I've been very careful about avoiding sick people at home and work. Since I've been doing this a while, it is starting to feel like habit, and I'm not having to think so hard about it anymore. I'm sure I could afford to be more careful, but I think I'm being prudent most of the time.
Passing 6 months I'm now able to go to "water zumba" with my wife at our local health club. I did that on Monday and it was great to be back. I like the water exercise because it is so low impact and still a good work out. I'm one of the only men there, but I'm ok with that.
One final note, my hair has completely returned. Where once I had thin and very straight hair, I now have full curly hair. I don't know if this will last, but I'm taking advantage of it for now. I didn't let my hair stylist cut it off last week so I can see how curly it will get.
Overall, I feel great and hope this new phase lasts a very long time. To anyone that reads this thread in preparation for your own transplant, I wish you all the luck in the world.
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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)
Glad to hear you are doing well. My husband is also doing well and has started Velcade injections every other week for maintenance. He has the flu right now despite getting the shot so he is on Tamiflu and rest with fluid push. His fever is low grade and he is taking fluids well so they are not worried.
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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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