I will get an auto stem cell transplant soon. Although I have read many texts about side effects, I'm interested in facts about it! Very important for me are the effects from a subjecitve viewpoint.
Questions such as: How did you feel before? How did you spend the days during the transplant? The effects on your caregivers? What about job/workplace and children? How have been the days and nights (sleep etc.) and how could you prepare yourself?
It would be great if the experienced patients could help me and tell about it.
I am honest: I am afraid. And sentences like: it will be the hell are not very helpful.
Thank you very much in advance, Tom
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Re: Stem cell transplant (SCT) experiences
Hi Tom,
Here's a pretty good discussion thread here in the forum that covers some of your questions I think.
Stem cell transplant - your experiences?
It seems that there are so many different experiences. In my case, in was no fun but not as bad as I thought it would be.
Here's a pretty good discussion thread here in the forum that covers some of your questions I think.
Stem cell transplant - your experiences?
It seems that there are so many different experiences. In my case, in was no fun but not as bad as I thought it would be.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Stem cell transplant (SCT) experiences
Hi Tom,
EJ and I kept a day-by-day journal of his SCT on caringbridge. Here's the link. Please feel free to read it. Even with a very (very!) bad allergic reaction to some of the antibiotics, EJ found the whole thing somewhat boring and anticlimactic. After he left the hospital he recovered very quickly, and was back to work within two months.
The nurses were great, and I didn't have much to worry about while he was in the hospital. Mostly I was just there to be his support, cheer him on, help him get exercise, etc. The days he was in intensive care because of the allergic reaction were tough - mostly because it was over a holiday weekend and he had to move from one service to another. The heart ward wasn't equipped to deal with his neutropenia and I felt like a broken record reminding them he was a transplant patient.
Other than that -- and I kid you not -- the thing that stressed me out the most was laundry! He had to change clothes everyday, and we hadn't bought enough pajamas! He's 6'4" so hospital clothes were not comfortable. After a long day of work, going to see him and getting home late, I still had to do laundry for him!!!!
http://www.caringbridge.org/visit/erikjohnson2
Good luck,
Lyn
EJ and I kept a day-by-day journal of his SCT on caringbridge. Here's the link. Please feel free to read it. Even with a very (very!) bad allergic reaction to some of the antibiotics, EJ found the whole thing somewhat boring and anticlimactic. After he left the hospital he recovered very quickly, and was back to work within two months.
The nurses were great, and I didn't have much to worry about while he was in the hospital. Mostly I was just there to be his support, cheer him on, help him get exercise, etc. The days he was in intensive care because of the allergic reaction were tough - mostly because it was over a holiday weekend and he had to move from one service to another. The heart ward wasn't equipped to deal with his neutropenia and I felt like a broken record reminding them he was a transplant patient.
Other than that -- and I kid you not -- the thing that stressed me out the most was laundry! He had to change clothes everyday, and we hadn't bought enough pajamas! He's 6'4" so hospital clothes were not comfortable. After a long day of work, going to see him and getting home late, I still had to do laundry for him!!!!
http://www.caringbridge.org/visit/erikjohnson2
Good luck,
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 (SCT) experiences
"How did you feel before? How did you spend the days during the transplant? The effects on your caregivers? What about job/workplace and children? How have been the days and nights (sleep etc.) and how could you prepare yourself?"
Briefly, I felt fine before and I was in remission.
I think as far as caregivers go that will depend a lot on them and how fast you recover. I was slow in recovering. I had a persistent and late diagnosed pneumonia and I was 70 years old. I did another hospital stay about 5 weeks after the SCT for the pneumonia and after that I regained my strength pretty fast.
I'm not sure I understand the sleep etc. If you mean during the hospital recovery, I had trouble sleeping and they were reluctant to give me any sleep aid. I countered by asking for a pain pill every evening. When I returned home I had no problems with sleeping, but I did have a lot of nausea for a few weeks.
As far as preparation, two things come to mind. First is don't stress out about it because it isn't that bad. The hospital stay for me was all uphill, in spite of a case of C-diff. If I were to do it again, I would be on yogurt by the 2nd or 3rd day. I didn't have much appetite and I relied on Boost. Ensure would have worked also, and all hospitals I believe have it available on request. It's a simple way to maintain some nutrition.
I cut my hair short and I wish I had shaved it. I didn't care for the hair all over the bedding for a couple of days.
Briefly, I felt fine before and I was in remission.
I think as far as caregivers go that will depend a lot on them and how fast you recover. I was slow in recovering. I had a persistent and late diagnosed pneumonia and I was 70 years old. I did another hospital stay about 5 weeks after the SCT for the pneumonia and after that I regained my strength pretty fast.
I'm not sure I understand the sleep etc. If you mean during the hospital recovery, I had trouble sleeping and they were reluctant to give me any sleep aid. I countered by asking for a pain pill every evening. When I returned home I had no problems with sleeping, but I did have a lot of nausea for a few weeks.
As far as preparation, two things come to mind. First is don't stress out about it because it isn't that bad. The hospital stay for me was all uphill, in spite of a case of C-diff. If I were to do it again, I would be on yogurt by the 2nd or 3rd day. I didn't have much appetite and I relied on Boost. Ensure would have worked also, and all hospitals I believe have it available on request. It's a simple way to maintain some nutrition.
I cut my hair short and I wish I had shaved it. I didn't care for the hair all over the bedding for a couple of days.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Stem cell transplant (SCT) experiences
Welcome to the forum, Tom.
As Joy has mentioned, there are all sorts of discussions here in the forum that address just about every question you've mentioned -- probably multiple discussions about each question! If you do a search from the forum search box on either "transplant" or "SCT", you'll find just about all of them. Here's a link that will help:
https://myelomabeacon.org/forum/search.php?keywords=transplant+SCT+ASCT&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
Good luck to you!
As Joy has mentioned, there are all sorts of discussions here in the forum that address just about every question you've mentioned -- probably multiple discussions about each question! If you do a search from the forum search box on either "transplant" or "SCT", you'll find just about all of them. Here's a link that will help:
https://myelomabeacon.org/forum/search.php?keywords=transplant+SCT+ASCT&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
Good luck to you!
Re: Stem cell transplant (SCT) experiences
As has been said, there have been multiple discussions on the forum about this issue in the past. But, here are my experiences:
1. I didn't do anything in particular to prepare for the transplant other than having my hair shaved off as soon as I saw that it was beginning to come out about 10 days after the Cytoxan infusion in preparation for harvesting the stem cells. I did a thorough cleaning of my house before going into the hospital. I set up a Caringbridge site so that I could post daily on how I was doing without having to do individual emails to everyone. I bought an ebook so that I would have plenty of choices of things to read, depending on how I felt, without lugging a suitcase full of books to the hospital with me - that was an incredibly smart thing I did for myself.
2. I felt pretty good prior to the transplant. I never reached CR with my induction, but felt much better than when I started treatment.
3. I took my laptop, cell phone, ebook, and ipod with me to the hospital. I spent every day out of bed all day reading, checking my email, listening to music, and talking with people on the phone. I walked in the halls quite a bit for exercise. A fair number of people came to visit. Since I worked for the health system where I had my transplant, there were a number of colleagues who would drop in on their lunch breaks to say hi. Most of the time I was by myself and I loved the peace and quiet. I was never bored.
4. I had diarrhea for 2 days, mouth sores, and nausea that they couldn't seem to find a way to control. Because of the nausea, I could only tolerate broth, plain yogurt, and water. The dietician kept having Ensure placed on my tray, but that caused almost more problems than anything else. I definitely wasn't getting enough nutrition while I was in the hospital. Because of 2 major blizzards while I was in the hospital, my sister was unable to bring me food that I might have been able to tolerate. The nausea lasted about 8 weeks. Gradually I was able to add foods back in to my diet, but I still can't tolerate a few things, mostly foods that are highly acidic.
5. My sister came from Iowa to stay with me for 6 weeks. She was very worried about me and was anxious about how to help me out. Although I still fatigued fairly easily when she flew home, I was able to do all that I needed to do for myself by then. I went back to work as a physical therapist 10 weeks after the transplant. That was hard because of both the mental and physical energy that my job required.
6. I slept really well in the hospital except for one night. That was because 3 people were talking loudly at a mini-nurse's station across from my room. I got up and asked them to please talk more softly. They complied and I fell asleep with no problems. At home I napped some each day and slept soundly at night.
I suggest that you bring whatever will make you comfortable and keep you occupied to the hospital. I was glad not to have someone staying with me all day and night. I relished the alone time that I had.
I wish you the best with your transplant,
Nancy in Phila
1. I didn't do anything in particular to prepare for the transplant other than having my hair shaved off as soon as I saw that it was beginning to come out about 10 days after the Cytoxan infusion in preparation for harvesting the stem cells. I did a thorough cleaning of my house before going into the hospital. I set up a Caringbridge site so that I could post daily on how I was doing without having to do individual emails to everyone. I bought an ebook so that I would have plenty of choices of things to read, depending on how I felt, without lugging a suitcase full of books to the hospital with me - that was an incredibly smart thing I did for myself.
2. I felt pretty good prior to the transplant. I never reached CR with my induction, but felt much better than when I started treatment.
3. I took my laptop, cell phone, ebook, and ipod with me to the hospital. I spent every day out of bed all day reading, checking my email, listening to music, and talking with people on the phone. I walked in the halls quite a bit for exercise. A fair number of people came to visit. Since I worked for the health system where I had my transplant, there were a number of colleagues who would drop in on their lunch breaks to say hi. Most of the time I was by myself and I loved the peace and quiet. I was never bored.
4. I had diarrhea for 2 days, mouth sores, and nausea that they couldn't seem to find a way to control. Because of the nausea, I could only tolerate broth, plain yogurt, and water. The dietician kept having Ensure placed on my tray, but that caused almost more problems than anything else. I definitely wasn't getting enough nutrition while I was in the hospital. Because of 2 major blizzards while I was in the hospital, my sister was unable to bring me food that I might have been able to tolerate. The nausea lasted about 8 weeks. Gradually I was able to add foods back in to my diet, but I still can't tolerate a few things, mostly foods that are highly acidic.
5. My sister came from Iowa to stay with me for 6 weeks. She was very worried about me and was anxious about how to help me out. Although I still fatigued fairly easily when she flew home, I was able to do all that I needed to do for myself by then. I went back to work as a physical therapist 10 weeks after the transplant. That was hard because of both the mental and physical energy that my job required.
6. I slept really well in the hospital except for one night. That was because 3 people were talking loudly at a mini-nurse's station across from my room. I got up and asked them to please talk more softly. They complied and I fell asleep with no problems. At home I napped some each day and slept soundly at night.
I suggest that you bring whatever will make you comfortable and keep you occupied to the hospital. I was glad not to have someone staying with me all day and night. I relished the alone time that I had.
I wish you the best with your transplant,
Nancy in Phila
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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 (SCT) experiences
Hi, I want to say thank you for your help and the links.
About the topic sleep: I heard, that dexamethasone is a bit like Red Bull and keeps you up during the night. Why this is a point to me? I hate, beeing awake one or two whole nights, thinking about myeloma and it's implications. My inner world is sometimes a battlefield, and I try to show this not to my three children (4,6,8).
I will work me through the comments and try to learn from the brave and fellow patients here at this forum. Again - thank you for your comments. Tom
About the topic sleep: I heard, that dexamethasone is a bit like Red Bull and keeps you up during the night. Why this is a point to me? I hate, beeing awake one or two whole nights, thinking about myeloma and it's implications. My inner world is sometimes a battlefield, and I try to show this not to my three children (4,6,8).
I will work me through the comments and try to learn from the brave and fellow patients here at this forum. Again - thank you for your comments. Tom
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Tom X.
Re: Stem cell transplant (SCT) experiences
Hi Tom,
For me, Tylenol PM does the job on those dex nights. Check with your doctor because everyone's situation is different. I have a friend with lung cancer and he takes xanax with something else. But again, run it by your doctor because dosage, liver and kidney function, and other considerations need to be taken into account.
For me, Tylenol PM does the job on those dex nights. Check with your doctor because everyone's situation is different. I have a friend with lung cancer and he takes xanax with something else. But again, run it by your doctor because dosage, liver and kidney function, and other considerations need to be taken into account.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Stem cell transplant (SCT) experiences
Tom,
I know what you mean about the dex and spending the time worrying about myeloma. One of the things that I did when I was first diagnosed was to take an 8 week course in Mindful Meditation. It has helped me enormously to not spend so much time about worrying about what may come in the future and focusing more on the here and now. I learned a couple of very easy, short meditation practices that I use on those nights when I have trouble sleeping and the brain works overtime.
Most of the time these work for me, but occasionally I take either a Benadryl [diphenhydramine] or a Valium [diazepam} to help me go to sleep. Both my oncologist and my primary doctors have recommended this to me and have given me a prescription for Valium when I have needed it. I think that I've taken 15 Valium over the last 2 years, so you can see that the meditation actually has helped me a great deal.
Nancy in Phila
I know what you mean about the dex and spending the time worrying about myeloma. One of the things that I did when I was first diagnosed was to take an 8 week course in Mindful Meditation. It has helped me enormously to not spend so much time about worrying about what may come in the future and focusing more on the here and now. I learned a couple of very easy, short meditation practices that I use on those nights when I have trouble sleeping and the brain works overtime.
Most of the time these work for me, but occasionally I take either a Benadryl [diphenhydramine] or a Valium [diazepam} to help me go to sleep. Both my oncologist and my primary doctors have recommended this to me and have given me a prescription for Valium when I have needed it. I think that I've taken 15 Valium over the last 2 years, so you can see that the meditation actually has helped me a great deal.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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