This is for those of you who have has a auto stem cell transplant-
I know this is a sort of a silly question but when I have read the many reviews and stories of stem cell transplants everyone mentions being out of work for months. I am able to work from home on a computer and I could easily function in that capacity and do virtually my entire job if I had to given that I felt energetic enough to do it.
My question really is about how you feel during the 3+/- week period when you are at the hospital or nearby and actually doing the chem/stem cell transplant. Do many of you feel like you are able to sit up and function semi-normally for a few hours a day or are many/most of these days spent completely wiped out and sleeping. I know that each one of us has different reactions to the treatment but I'd love to get a general impression of what I am in for.
I'd also like your impression of your energy level once you've returned home but are still in "quarantine" so to speak until your immune system can handle the outside world.
Should all my tests come back as we expect at the end of the month I could be ready for a stem cell transplant as early as July. My hope now because of my job is that it can wait until August 1st. There are certain tasks that would be too complicated to teach someone else in this short period but if I have an idea I may be able to help a little from the hospital then I might not feel the need to wait. I know there are no guarantees but I am kind of just trying to test the waters.
any advice/input would be appreciated.
Peri
Forums
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mowgli18 - Name: Mowgli18
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 51
Re: Stem cell transplant and ability to do light work
Peri,
EJ is starting his stem cell transplant on Sunday, and we had the same questions about energy levels. We spoke with the local docs who are performing the SCT, as well as with the docs at Dana-Farber. The local docs keep assuring us that EJ will be back at work (part time) within 8 weeks. The docs at Dana-Farber were a little surprised at that projection, and felt it would be closer to three months.
I've come to realize that different BMT/SCT centers have slightly different protocols with slightly different results and slightly different expectations. Each group seems to "fine tune" their processes based on their experiences. The group we are seeing -- based on their particular experience -- insists that EJ will return to work in 8 weeks. So be it ... at least I understand why they are saying what they are saying.
Having said that, they told us that his worst days will start around day +3 (when all of his numbers bottom out) and will last about 5 - 7 days. It is very questionable that he will be able to work for this week. He'll be able to come home when all of the side effects from the melphalan have resolved, which should be around day +14. They say that when he comes home, he'll have very few restrictions in terms of a quarrantine.
Hope that helps. I'll try to add to this post as we progress. We're only two steps ahead of you!
Lyn
EJ is starting his stem cell transplant on Sunday, and we had the same questions about energy levels. We spoke with the local docs who are performing the SCT, as well as with the docs at Dana-Farber. The local docs keep assuring us that EJ will be back at work (part time) within 8 weeks. The docs at Dana-Farber were a little surprised at that projection, and felt it would be closer to three months.
I've come to realize that different BMT/SCT centers have slightly different protocols with slightly different results and slightly different expectations. Each group seems to "fine tune" their processes based on their experiences. The group we are seeing -- based on their particular experience -- insists that EJ will return to work in 8 weeks. So be it ... at least I understand why they are saying what they are saying.
Having said that, they told us that his worst days will start around day +3 (when all of his numbers bottom out) and will last about 5 - 7 days. It is very questionable that he will be able to work for this week. He'll be able to come home when all of the side effects from the melphalan have resolved, which should be around day +14. They say that when he comes home, he'll have very few restrictions in terms of a quarrantine.
Hope that helps. I'll try to add to this post as we progress. We're only two steps ahead of you!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Stem cell transplant and ability to do light work
Everyone is different - in Rex's case - I would say the first 3-4 days or so in the hospital he would have been able to do computer work. However, once the affects of melphalan kicked in and immune system started to drop - he was exhausted and uncomfortable. Took books to read - but didn't even open them up -- others say they got a lot of reading done.
He developed bad side effects to pain and sleep medication. Developed DVT and then extremely low blood pressure a couple weeks after the 14-15 day hospital stay. - which required another 3 day inpatient stay. Took about 3 months for fatigue to lighten up - now, he's much better (transplant was late October / early November) - but still tires easily. His kidney's were affected, so that accounts for some of the anemia and fatigue.
Best wishes for a successful transplant. Rex and Kay
He developed bad side effects to pain and sleep medication. Developed DVT and then extremely low blood pressure a couple weeks after the 14-15 day hospital stay. - which required another 3 day inpatient stay. Took about 3 months for fatigue to lighten up - now, he's much better (transplant was late October / early November) - but still tires easily. His kidney's were affected, so that accounts for some of the anemia and fatigue.
Best wishes for a successful transplant. Rex and Kay
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Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: Stem cell transplant and ability to do light work
Peri,
My husband has had two stem cell transplants, both done on an outpatient basis. He was able to go back to work after about 2 months. Based on experience, I'd say you probably won't feel like working during the early weeks.
- Mary
My husband has had two stem cell transplants, both done on an outpatient basis. He was able to go back to work after about 2 months. Based on experience, I'd say you probably won't feel like working during the early weeks.
- Mary
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Mary T
Re: Stem cell transplant and ability to do light work
I hope someone can answer this question. Why need for transplant so early after few cycles, considering the "hardship" and side effects, if the drugs are controlling the disease? Why some doctors like to do it right after a few cycles and others wait when drugs don't work anymore. Any advice?
Re: Stem cell transplant and ability to do light work
Hi Nadia,
Here are some forum discussions on the topic of stem cell transplant timing that you may find helpful:
Transplant in the future-timing questions: https://myelomabeacon.org/forum/transplant-in-the-future-timing-questions-t300.html
Question about stem cell transplant timing: https://myelomabeacon.org/forum/question-about-multiple-myeloma-stem-cell-transplant-timing-t131.html
Time for transplant: https://myelomabeacon.org/forum/time-for-transplant-t250.html
Additionally, you may be interested in today's news article: https://myelomabeacon.org/news/2011/06/15/transplantation-versus-novel-agents-for-myeloma-study-supports-transplantation-eha-2011/
Here are some forum discussions on the topic of stem cell transplant timing that you may find helpful:
Transplant in the future-timing questions: https://myelomabeacon.org/forum/transplant-in-the-future-timing-questions-t300.html
Question about stem cell transplant timing: https://myelomabeacon.org/forum/question-about-multiple-myeloma-stem-cell-transplant-timing-t131.html
Time for transplant: https://myelomabeacon.org/forum/time-for-transplant-t250.html
Additionally, you may be interested in today's news article: https://myelomabeacon.org/news/2011/06/15/transplantation-versus-novel-agents-for-myeloma-study-supports-transplantation-eha-2011/
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Julie Shilane - Name: Julie Shilane, Beacon Staff
Re: Stem cell transplant and ability to do light work
Peri-
Of course you know that everyone's experience is different, but there are some similarities. I took my laptop and my ebook with me to the hospital along with some DVD's. I read a lot and used my laptop a lot while in the hospital. I didn't have good enough concentration for the DVD's, or maybe they just weren't of interest at the time. I slept some during the day, but not a whole lot. I think that there was really only 1-2 days that I took a nap in my bed while in the hospital. Once I got up and dressed in the morning, I was up all day. When my blood counts bottomed out I was useless for a couple of days, but then started to perk back up again.
When I went home I wasn't under any restrictions except to stay away from crowds and people with respiratory ailments. The other restriction had to do with the fact that a close friend had had a baby 2 days before my transplant. I wanted to see the baby. My oncologist said it would be ok as long as the baby hadn't had any vaccinations within the week when I saw the baby. So, my friend brought the baby over the day before her next schedule doctor's appointment.
I was more tired at home than at the hospital, but I was also much more active. A couple of naps a day or at least a lie down for a while each day took care of that. I went back to work as a physical therapist 10 weeks after my transplant. I was quite tired from working for a few months, but slowly returned to pre-Myeloma status as my blood counts moved into the normal range.
So, you may be able to do a fair amount of work from home and from the hospital if it is computer work. You will have to be very aware of your concentration and fatigue levels and respect them.
Good luck with your transplant. I'm glad that I chose that route since I have been drug free for 18 months now.
Nancy
Of course you know that everyone's experience is different, but there are some similarities. I took my laptop and my ebook with me to the hospital along with some DVD's. I read a lot and used my laptop a lot while in the hospital. I didn't have good enough concentration for the DVD's, or maybe they just weren't of interest at the time. I slept some during the day, but not a whole lot. I think that there was really only 1-2 days that I took a nap in my bed while in the hospital. Once I got up and dressed in the morning, I was up all day. When my blood counts bottomed out I was useless for a couple of days, but then started to perk back up again.
When I went home I wasn't under any restrictions except to stay away from crowds and people with respiratory ailments. The other restriction had to do with the fact that a close friend had had a baby 2 days before my transplant. I wanted to see the baby. My oncologist said it would be ok as long as the baby hadn't had any vaccinations within the week when I saw the baby. So, my friend brought the baby over the day before her next schedule doctor's appointment.
I was more tired at home than at the hospital, but I was also much more active. A couple of naps a day or at least a lie down for a while each day took care of that. I went back to work as a physical therapist 10 weeks after my transplant. I was quite tired from working for a few months, but slowly returned to pre-Myeloma status as my blood counts moved into the normal range.
So, you may be able to do a fair amount of work from home and from the hospital if it is computer work. You will have to be very aware of your concentration and fatigue levels and respect them.
Good luck with your transplant. I'm glad that I chose that route since I have been drug free for 18 months now.
Nancy
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Stem cell transplant and ability to do light work
I received my stem cells 8 weeks ago at Mayo Clinic. I am 46 years old from Ann Arbor, MI. The experience must be unique to everyone.
At Mayo, the transplant is outpatient, so my husband and I had rented a furnished apartment nearby. I went through the process very smoothly. Very little fatigue. Boredom was our biggest factor. Got a little queasy about 5 days after the malphalan, started Compazine (prochlorperazine) right away and didn't have anymore problems. No mouth sores, I chewed ice and ate popsicles while receiving the chemo, as I learned about on this site.
We saw signs of engrafting around day 11. Everything came up but my neutrophils, which were a little stubborn. Went home on day 21, a week later than our doctor expected, due to the low neutrophil count.
I have been full of energy and back to my old self since I returned home. I have an 11 and 13 year old at home, so that may have helped. I am a realtor and expected to take the summer off due to everything I had read about fatigue, etc., but I headed back into the office last week. Wrote an offer on a house this week and am signing up a new listing next week.
I was diagnosed Stage 1, after I took a fall and dislocated 2 ribs in my back. This all led to blood tests, which led to my diagnosis. I have little to no damage from the disease, so this may attribute to my quick recovery. Who knows.
We were very nervous heading into the stem cell transplant, as I'm sure everyone is. We completed the harvest and transplant all at the same time, so we were in Rochester a total of 6 weeks. A long time to be away from kids, so motivation may have played a factor as well. I was even joking with the nurses that this was not the second honeymoon my husband had promised me
I wish you lots of luck and good health. Keep a positive attitude!
Julie
At Mayo, the transplant is outpatient, so my husband and I had rented a furnished apartment nearby. I went through the process very smoothly. Very little fatigue. Boredom was our biggest factor. Got a little queasy about 5 days after the malphalan, started Compazine (prochlorperazine) right away and didn't have anymore problems. No mouth sores, I chewed ice and ate popsicles while receiving the chemo, as I learned about on this site.
We saw signs of engrafting around day 11. Everything came up but my neutrophils, which were a little stubborn. Went home on day 21, a week later than our doctor expected, due to the low neutrophil count.
I have been full of energy and back to my old self since I returned home. I have an 11 and 13 year old at home, so that may have helped. I am a realtor and expected to take the summer off due to everything I had read about fatigue, etc., but I headed back into the office last week. Wrote an offer on a house this week and am signing up a new listing next week.
I was diagnosed Stage 1, after I took a fall and dislocated 2 ribs in my back. This all led to blood tests, which led to my diagnosis. I have little to no damage from the disease, so this may attribute to my quick recovery. Who knows.
We were very nervous heading into the stem cell transplant, as I'm sure everyone is. We completed the harvest and transplant all at the same time, so we were in Rochester a total of 6 weeks. A long time to be away from kids, so motivation may have played a factor as well. I was even joking with the nurses that this was not the second honeymoon my husband had promised me
I wish you lots of luck and good health. Keep a positive attitude!
Julie
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Julie
Re: stem cell transplant and ability to do light work
Wow, perfect timing for this thread. I am starting workup on July 6. No dates have been discussed for the SCT but I'm definitely on a fast track by local standards. I am an oilfield salesman and work from home as well. I'm also a partner in the business so that REALLY helps.
One of my lucky traits is a high tolerance for everything they give me. Combined with rapid response in numbers from Velcade / dex, young children, stage 1 diagnosis, and one of the less aggressive myelomas. This has made me a strong candidate for a quick SCT by local protocol.
I too have the question regarding scheduling. For me, our slack season is spring breakup, mid-April to June. My nature when confronted with something like SCT is to push hard to get it done without any hesitation. I'm wondering if I should take the earliest date offered and not even bring up the issue of waiting.
One of my lucky traits is a high tolerance for everything they give me. Combined with rapid response in numbers from Velcade / dex, young children, stage 1 diagnosis, and one of the less aggressive myelomas. This has made me a strong candidate for a quick SCT by local protocol.
I too have the question regarding scheduling. For me, our slack season is spring breakup, mid-April to June. My nature when confronted with something like SCT is to push hard to get it done without any hesitation. I'm wondering if I should take the earliest date offered and not even bring up the issue of waiting.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Stem cell transplant and ability to do light work
Timing is an interesting thing. We just assumed we would pick our time and were thinking that August of 2011, during the kids summer break, would work best. The transplant doc had a different plan. He saw no reason to wait and wanted us to move ahead so that I could get off the Revlimid / Velcade / dex as soon as possible (have not had any neuropathy). We decided he knew best, so we moved the schedule up. I compared trying to time it to having a baby, if you try to time it, there's really never a great time, sometimes it's just best to jump in there.
Looking back on it, we are so glad it's behind us. The kids were in school while we were in Rochester living in an apartment. This kept them busy and on a normal schedule (staying with friends and family), now we are enjoying a wonderful summer together.
Best of luck to you, you sound like you'll do just fine
Julie
Looking back on it, we are so glad it's behind us. The kids were in school while we were in Rochester living in an apartment. This kept them busy and on a normal schedule (staying with friends and family), now we are enjoying a wonderful summer together.
Best of luck to you, you sound like you'll do just fine
Julie
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Julie
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