Two weeks from today we will head to the Smoky Mountains for a much needed few days of getting away from everything. It has been a few years since we have been in the fall. We usually have been going in the spring.
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Re: Mark's stem cell transplant adventure (SCCA)
Glad to hear you are doing well, Mark! My husband still gets more tired and his bed time has moved up considerably Two weeks from today we will head to the Smoky Mountains for a much needed few days of getting away from everything. It has been a few years since we have been in the fall. We usually have been going in the spring.
Two weeks from today we will head to the Smoky Mountains for a much needed few days of getting away from everything. It has been a few years since we have been in the fall. We usually have been going in the spring.-
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)
Wonderful news, Mark, and thank you for sharing your experience! My husband is also back at work now (his transplant was on August 1st and he started back part-time on Day 45, then full time on Day 60.) He is generally tired by the end of the day, but nothing like the wiped-out fatigue that he experienced during induction therapy. Overall he is very happy to be back in a "routine"; busy, distracted, and enjoying the support and banter of his colleagues.
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texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Mark's stem cell transplant adventure (SCCA)
Day+91
Today is a major milepost and sign of the next stage of my journey.
I completed a full skeletal x-ray, bone marrow biopsy and the first labs in over 90 days to measure free light chains and protein markers. I have reasonable confidence the news will be good next week when I have complete results.
The best news for the day is that nearly all dietary restrictions have been lifted and I can start eating more of what I enjoy. I've started my mental list – mostly restaurants and take-out – but a delicious cold cut sandwich from a favorite sub shop is first. It's funny the things you find out you miss most.
Today is a major milepost and sign of the next stage of my journey.
I completed a full skeletal x-ray, bone marrow biopsy and the first labs in over 90 days to measure free light chains and protein markers. I have reasonable confidence the news will be good next week when I have complete results.
The best news for the day is that nearly all dietary restrictions have been lifted and I can start eating more of what I enjoy. I've started my mental list – mostly restaurants and take-out – but a delicious cold cut sandwich from a favorite sub shop is first. It's funny the things you find out you miss most.
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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)
Congratulations on hitting this milestone, Mark. Enjoy being able to re-indulge in all the food you've had to stay away from, and I hope you get stellar results on your labs!
P.S. - That sandwich looks great!
P.S. - That sandwich looks great!
Re: Mark's stem cell transplant adventure (SCCA)
Hi Mark,
Thanks for your thread. I'm so pleased you are doing well. My stem cell transplant is November the 9th. Starting to get worried now.
All the best. At least you will be well in time for Christmas to enjoy. Take care,
Dean
Thanks for your thread. I'm so pleased you are doing well. My stem cell transplant is November the 9th. Starting to get worried now.
All the best. At least you will be well in time for Christmas to enjoy. Take care,
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Mark's stem cell transplant adventure (SCCA)
The sandwich looks great! Hope you enjoyed it. Good thoughts for real results on your 90-day studies.
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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 +98
The word for today is "perspective." I know I can share my true thoughts with the Beacon forum because you understand the science of multiple myeloma and the emotional confusion it sometimes puts us through.
I spoke to my doctor today about the results of my bone marrow biopsy and blood tests. I think for most people I talk to I'll say "The transplant was very successful and the doctors are really happy with my response. We will continue my current maintenance treatment to make sure we solidify the results". That is one perspective and the easiest to understand.
My blood test showed an M-spike of 0.3 g/dl (I was 4.9 before any treatment and 0.6 pre transplant). My bone marrow biopsy was even better. They could not conclusively identify any cancer, but found 0.001% of white blood cells to be abnormal. Put another way, not definitively zero. Another perspective.
As I said, the doctors are really pleased with the result. There was no result that we expected that would have changed our current treatment plans. Most importantly, I'm feeling very good and gradually going back to work. Admittedly, part of me is struggling with not achieving a "complete response", but it's a label. The statistics might move a bit, but my future remains as uncertain as it was a week ago. My present remains unchanged. It's all perspective.
The word for today is "perspective." I know I can share my true thoughts with the Beacon forum because you understand the science of multiple myeloma and the emotional confusion it sometimes puts us through.
I spoke to my doctor today about the results of my bone marrow biopsy and blood tests. I think for most people I talk to I'll say "The transplant was very successful and the doctors are really happy with my response. We will continue my current maintenance treatment to make sure we solidify the results". That is one perspective and the easiest to understand.
My blood test showed an M-spike of 0.3 g/dl (I was 4.9 before any treatment and 0.6 pre transplant). My bone marrow biopsy was even better. They could not conclusively identify any cancer, but found 0.001% of white blood cells to be abnormal. Put another way, not definitively zero. Another perspective.
As I said, the doctors are really pleased with the result. There was no result that we expected that would have changed our current treatment plans. Most importantly, I'm feeling very good and gradually going back to work. Admittedly, part of me is struggling with not achieving a "complete response", but it's a label. The statistics might move a bit, but my future remains as uncertain as it was a week ago. My present remains unchanged. It's all perspective.
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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,
Many people have a persistent low M-spike after transplant that disappears a couple of months later. In other words, the response may continue to deepen over the next few months. Also, was your monoclonal protein the same as your original, or was it coming from a different immunoglobin? If not, there is something called oligoclonal banding which can actually be a sign that your immune system is reconstituting itself, which some doctors say is a positive sign, actually. I had that phenomenon for several months after my transplant. On and off for nearly a year. It was a different immunoglobin and my light chains remained normal, individually and with respect to their ratio.
So, what I am saying is, don't be disappointed that you didn't get a CR. That may well develop in the coming months, especially if you are going to do maintenance.
I hope this post was helpful. I think you are doing great!
Hang in there!
Many people have a persistent low M-spike after transplant that disappears a couple of months later. In other words, the response may continue to deepen over the next few months. Also, was your monoclonal protein the same as your original, or was it coming from a different immunoglobin? If not, there is something called oligoclonal banding which can actually be a sign that your immune system is reconstituting itself, which some doctors say is a positive sign, actually. I had that phenomenon for several months after my transplant. On and off for nearly a year. It was a different immunoglobin and my light chains remained normal, individually and with respect to their ratio.
So, what I am saying is, don't be disappointed that you didn't get a CR. That may well develop in the coming months, especially if you are going to do maintenance.
I hope this post was helpful. I think you are doing great!
Hang in there!
Re: Mark's stem cell transplant adventure (SCCA)
I agree, Mark. They are just labels. I think you have achieved great success and am glad you are feeling better each day.
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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 hope you had a good Thanksgiving and all is going 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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