Everyone always posts questions about how the actual hospital stay is for a stem cell transplant (SCT) and how hard it can be. However, I am two months removed from my SCT and still am having issues.
I'd like to know everyone else's experiences after the SCT and coming home.
My stomach is in a perpetual state of flux and I have energy, but it is lackluster after awhile. I want to be normal, but as a 27 year old with multiple myeloma I know that that is just not possible. Loss of appetite, stomach issues, fatigue, and a scaly itchy rash all on my face and chest are my main complaints. How long does that take to go away?
I mean, I am able to function more and should be going back to work, but it just seems like one step forward and 5 steps backwards. One day I'll feel good, and the next I'll feel like I just do not want to do anything. I know I set off a nuclear bomb in my body but, Jesus, here I am 2 months later and it's still not good.
Everyone has fears of the actual transplant. However, in my experience, the worst part has been the recovery at home and feeling so helpless.
Mark
Forums
Re: Post stem cell transplant (SCT) experiences
Hi Mark,
I had my stem cell transplant at the end of July last year. I agree with you about it being a breeze but the aftermath is something completely different.
I was told by the specialist that, from his experience, it would take 3-4 months to get to 80% back to normal. I was in hospital for 4 weeks for the SCT and slept for the whole 4 weeks. I don't remember much, just bits and pieces and only because people have prompted the memory.
There is one thing I do remember very clearly is the nasty food and me vomiting every day, and the nurse walking in with a pump saying that I had lost 10kg and if I didn't start eating I'd have a tube inserted in the morning so they could start feeding me! I was determined not to have a PEG feed so I decided to force myself to eat the next meal. It was grilled white fish that was tough as old boots, and brown gravy. I dry heaved but made myself try it so the nurse in the room could see I was trying. It was so nasty, I ate 3 small bites and threw up. I said to the nurse that it wasn't my fault that I was trying. I didn't get the PEG feeds but the pump stayed in the room until I left a week later.
I continued to battle with vomiting for 5 months. Just random ... No reason ... No restriction on time or place. I carried travel sickness bags everywhere and used them. I went food shopping with my hubby and had to run to the car to vomit (which was so hard because I was still battling to walk)
Eating - it has taken 6-7 months to complete a small meal (probably a kid size). When I first got home it would take me all day to eat 1 cracker. Dry mouth was a problem and not producing enough saliva when eating makes it very difficult to eat anything. Taste came back slowly probably around the 3-4 month mark.
Bone pain was incredible, especially my hips and pelvis. Standing and walking were difficult at first even standing waiting for the kettle to boil had me crying. It went away although now if I stand for 20 minutes I get sore and the pain lasts for awhile.
I went back to work part time in November - at the 3 month mark and would go home a have a nap most days. I would try to do something to keep me out of the house each day to get used to being busy and get stronger so the naps were not necessary by the end of December just in time to go back to work full time in January.
I still get tired, I still have peripheral neuropathy in my hand and feet which I take Lyrica to control. But I have most of my strength and stamina back. When the doctor said about getting 80% back I think he was right.
Your body has been through a lot and needs to heal. Rest is very important, take the time to just chill. It is very frustrating -- so much so that my GP asked if I was depressed and I remember saying NO just very frustrated because my mind is saying "oh why don't we ...." and my head is saying "bugger off I am not moving". It's very frustrating.
I wish you all the best
Take care
Claire
I had my stem cell transplant at the end of July last year. I agree with you about it being a breeze but the aftermath is something completely different.
I was told by the specialist that, from his experience, it would take 3-4 months to get to 80% back to normal. I was in hospital for 4 weeks for the SCT and slept for the whole 4 weeks. I don't remember much, just bits and pieces and only because people have prompted the memory.
There is one thing I do remember very clearly is the nasty food and me vomiting every day, and the nurse walking in with a pump saying that I had lost 10kg and if I didn't start eating I'd have a tube inserted in the morning so they could start feeding me! I was determined not to have a PEG feed so I decided to force myself to eat the next meal. It was grilled white fish that was tough as old boots, and brown gravy. I dry heaved but made myself try it so the nurse in the room could see I was trying. It was so nasty, I ate 3 small bites and threw up. I said to the nurse that it wasn't my fault that I was trying. I didn't get the PEG feeds but the pump stayed in the room until I left a week later.
I continued to battle with vomiting for 5 months. Just random ... No reason ... No restriction on time or place. I carried travel sickness bags everywhere and used them. I went food shopping with my hubby and had to run to the car to vomit (which was so hard because I was still battling to walk)
Eating - it has taken 6-7 months to complete a small meal (probably a kid size). When I first got home it would take me all day to eat 1 cracker. Dry mouth was a problem and not producing enough saliva when eating makes it very difficult to eat anything. Taste came back slowly probably around the 3-4 month mark.
Bone pain was incredible, especially my hips and pelvis. Standing and walking were difficult at first even standing waiting for the kettle to boil had me crying. It went away although now if I stand for 20 minutes I get sore and the pain lasts for awhile.
I went back to work part time in November - at the 3 month mark and would go home a have a nap most days. I would try to do something to keep me out of the house each day to get used to being busy and get stronger so the naps were not necessary by the end of December just in time to go back to work full time in January.
I still get tired, I still have peripheral neuropathy in my hand and feet which I take Lyrica to control. But I have most of my strength and stamina back. When the doctor said about getting 80% back I think he was right.
Your body has been through a lot and needs to heal. Rest is very important, take the time to just chill. It is very frustrating -- so much so that my GP asked if I was depressed and I remember saying NO just very frustrated because my mind is saying "oh why don't we ...." and my head is saying "bugger off I am not moving". It's very frustrating.
I wish you all the best
Take care
Claire
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ClaireK - Name: Claire
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2013
- Age at diagnosis: 43
Re: Post stem cell transplant (SCT) experiences
Hi ,I had mine done in 2009 .I was in the hospital for 3 months,from the end of March to June. I do agree that the whole procedure was not so bad -- until they were replacing the cells. I got bad sores and thrush in my mouth and throat. Did not eat too much then either. My friends or husband would bring food in from outside once I was able to eat because the hospital stuff tasted like cardboard.
It took me until about September - October of that year to start to feel somewhat like me. I was always up at 5 or 6 and could work until 11-12 at night. Well I cannot do that anymore. I still wake up early, but by 8 pm I am tired.
I am 59 right now. At that time they said I would only live 3-6 months. My numbers were terrible because I had been misdiagnosed for 1 year prior. So I feel lucky to be here. Keep a very positive attitude at all times, and I am going to beat this someday. I never went into full remission, but I plan on staying alive until they come up with something to stop it.
I have been able to see my daughter graduate from college, get a job, get married, and I have a beautiful granddaughter from her. I just keep telling everyone that GOD is good and HE keeps me here for some reason and that I am just thankful for. I love being alive and, even though I do not have the energy I once did, it is better for me than not being here.
I am sure that, as young as you are, you will regain more energy than I did. Eat healthy things and if you can't I was making shakes with vitamins and as many good ingredients as I could .
Be happy and lot's of luck.
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Josephine D
Re: Post stem cell transplant (SCT) experiences
From what i have learned here and talking to people who have had transplants, it is clear that there are a wide range of experiences. One thing that some who had good post-transplant experiences emphasized was how important it is to exercise as much as you can. It doesn't have to be strenuous if you can't take it, just walking can be enough. But as fatigued as you might feel, moving around can give you energy.
I started walking and gently riding a stationary bike several days after the transplant and kept it up no matter how tired I felt or how much I didn't want to do it. I just ramped up from there and within a month I was back at the gym and riding my bike outside.
Now I don't mean to minimize the difficulties that others have had; perhaps I was just lucky. But putting your body in motion as much as possible can help the body heal
I started walking and gently riding a stationary bike several days after the transplant and kept it up no matter how tired I felt or how much I didn't want to do it. I just ramped up from there and within a month I was back at the gym and riding my bike outside.
Now I don't mean to minimize the difficulties that others have had; perhaps I was just lucky. But putting your body in motion as much as possible can help the body heal
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Post stem cell transplant (SCT) experiences
Had my stem cell transplant December 9th. Don't remember much of December, January or February. Started to feel again in March.
The chemo caused neuropathy in my feet, ankles and fingers. It drives me crazy. It caused me to have balance issues. It also causes my cataracts to get worse. Got them fixed and now can see better and without glasses, which is nice. My hair just started back about a week ago. I was about to call Bosley for help when it finally started to grow.
I am back to about 80 to 90%.
The chemo caused neuropathy in my feet, ankles and fingers. It drives me crazy. It caused me to have balance issues. It also causes my cataracts to get worse. Got them fixed and now can see better and without glasses, which is nice. My hair just started back about a week ago. I was about to call Bosley for help when it finally started to grow.
I am back to about 80 to 90%.
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Gidtup
Re: Post stem cell transplant (SCT) experiences
Hi Mark, Have you asked your doctor for, or are you already taking, 'proton pump inhibitors' for your upset stomach? After the ASCT, as well as feeling nauseated, tired and having a distorted sense of smell for awhile, I also was taking prescription drugs: an antibiotic, anti fungal, and anti viral. Sometimes I needed meds for pain or muscle relaxants too! All of these meds had the unwanted side effect of stomach upsets also, hence the PPI drug for that.
After the 100 day point, when I had my testing done and was done with the transplant clinic, being transferred back to my regular oncologist, having the hickman catheter removed, and generally being cleared for better health, I felt a lot better!
And I did walk outdoors every day I could in order to get some fresh air, which also helped. Hope that helps and that you are feeling better soon.
After the 100 day point, when I had my testing done and was done with the transplant clinic, being transferred back to my regular oncologist, having the hickman catheter removed, and generally being cleared for better health, I felt a lot better!
And I did walk outdoors every day I could in order to get some fresh air, which also helped. Hope that helps and that you are feeling better soon.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Post stem cell transplant (SCT) experiences
I probably fall into the "lucky" category for the most part.
I had my auto transplant on 2/7/14. Even though the 17 days I spent in the hospital for the transplant were no picnic (I had the usual side effects of throwing up, diarrhea, nausea and little to no appetite), I came out of the hospital actually feeling pretty good and my weight was about the same coming out as it was going in.
The day I got home from the hospital I was able to walk 20 minutes outside and tried to walk every day after that. My appetite magically came back the day I got back home. It took about 2-3 weeks for my appetite to get back to normal. I had a bit of nausea for about a week after I got home but it was very minor and the meds they gave me for that worked very well. My digestive system took a few weeks to get back to something close to normal after I got home.
I eventually got back to my pre transplant bike rides of 15 miles after about 6 weeks. Am I back to 100%? No. My heart rate is higher than it was before and my muscles get sore much easier. I'd say I'm at about 80-90% about 9 weeks after my transplant. My hair started to grow back about 7-8 weeks after the transplant and it is coming in very fine ... like a baby's hair. Hopefully it will eventually thicken up.
The one major side effect from the transplant that I'm not happy with is that the neuropathy in my feet got worse. Before the transplant the neuropathy was minor and I had slight numbness, but not all the time. Now the numbness is worse and at night my feet sometimes get very hot. I've had a couple of instances where I had the shooting pain type of neuropathy in my right foot. If that happens more, I'll probably ask my doctor to prescribe something for it.
I really don't know what caused the neuropathy to get worse ... was it the chemo for the harvest/transplant, or was it the Velcade they gave me shortly after the transplant, or was it just my body reacting to the stress of the transplant?
My doctor guessed that the reason I recovered quicker than most people is that I regularly worked out (biking, swimming, walking, weights) before my transplant and that probably helped me.
I had my auto transplant on 2/7/14. Even though the 17 days I spent in the hospital for the transplant were no picnic (I had the usual side effects of throwing up, diarrhea, nausea and little to no appetite), I came out of the hospital actually feeling pretty good and my weight was about the same coming out as it was going in.
The day I got home from the hospital I was able to walk 20 minutes outside and tried to walk every day after that. My appetite magically came back the day I got back home. It took about 2-3 weeks for my appetite to get back to normal. I had a bit of nausea for about a week after I got home but it was very minor and the meds they gave me for that worked very well. My digestive system took a few weeks to get back to something close to normal after I got home.
I eventually got back to my pre transplant bike rides of 15 miles after about 6 weeks. Am I back to 100%? No. My heart rate is higher than it was before and my muscles get sore much easier. I'd say I'm at about 80-90% about 9 weeks after my transplant. My hair started to grow back about 7-8 weeks after the transplant and it is coming in very fine ... like a baby's hair. Hopefully it will eventually thicken up.
The one major side effect from the transplant that I'm not happy with is that the neuropathy in my feet got worse. Before the transplant the neuropathy was minor and I had slight numbness, but not all the time. Now the numbness is worse and at night my feet sometimes get very hot. I've had a couple of instances where I had the shooting pain type of neuropathy in my right foot. If that happens more, I'll probably ask my doctor to prescribe something for it.
I really don't know what caused the neuropathy to get worse ... was it the chemo for the harvest/transplant, or was it the Velcade they gave me shortly after the transplant, or was it just my body reacting to the stress of the transplant?
My doctor guessed that the reason I recovered quicker than most people is that I regularly worked out (biking, swimming, walking, weights) before my transplant and that probably helped me.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Post stem cell transplant (SCT) experiences
Hi DallasGG,
Just in reply to your post about the neuropathy.
I suffer from it too. In my hands and feet. I tried to deal with the pain and not take any medication, but when the pain is flaring up, I get shooting pain which results in me pulling back or jerking my arms or legs. This made me worry one day as I was driving in very light traffic (very lucky) and I had a shooting pain in my foot so I pulled back my leg which made me pull my foot off the accelerator. Lucky I wasn't on the highway with my foot on the brake!
I decided right there that I needed help so got in to see my doctor who suggested Lyrica, which is used to treat nerve pain. It took the edge off, so, after consulting with my cardiologist (as I also have cardiac amyloidosis), the dose was increased and it helps. The only problem is that it increases your appetite.
Good luck and take care
Claire
Just in reply to your post about the neuropathy.
I suffer from it too. In my hands and feet. I tried to deal with the pain and not take any medication, but when the pain is flaring up, I get shooting pain which results in me pulling back or jerking my arms or legs. This made me worry one day as I was driving in very light traffic (very lucky) and I had a shooting pain in my foot so I pulled back my leg which made me pull my foot off the accelerator. Lucky I wasn't on the highway with my foot on the brake!
I decided right there that I needed help so got in to see my doctor who suggested Lyrica, which is used to treat nerve pain. It took the edge off, so, after consulting with my cardiologist (as I also have cardiac amyloidosis), the dose was increased and it helps. The only problem is that it increases your appetite.
Good luck and take care
Claire
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ClaireK - Name: Claire
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2013
- Age at diagnosis: 43
Re: Post stem cell transplant (SCT) experiences
I went from mid April until well into July before I shook off fatigue, nausea, loss of appetite, and an overall feeling of blase, along with a hospital stay for pneumonia. I wasn't on any maintenance, so all of my effects were related to the stem cell transplant.
By July, however, I felt alive again, and by September human.
By July, however, I felt alive again, and by September human.
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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: Post stem cell transplant (SCT) experiences
My post stem cell transplant experience was also quite difficult. Although I was only in the hospital for 2 1/2 weeks, after I left the hospital I was very debilitated for another two months and not myself for another three.
I believe two factors worsened my experience. First, I had 7 vertebrae fractures before the transplant, which led to deconditioning. Although kyphoplasties fixed the fractures and I was able to swim every day in a therapy pool the month before the SCT, I had nonetheless already lost significant muscle mass. Second, I had terrible thrush after SCT that took quite a while to cure with medications, which meant I had great difficulty eating at all. Altogether I lost 30 pounds and was quite weak.
Things that helped: finding something to eat. You won't get any energy without eating. For me, this was difficult because of the restrictions that excluded most of my favorite foods on top of taste problems and nausea. I ended up relying on Instant Breakfast.
Exercise also helped enormously. I began walking every day, starting with about 10 minutes and working up to 40. Walking outside in a pretty place was particularly renewing. I was not allowed to go into public places, but I did ride along when my husband rand errands and the fresh air was good.
Something I haven't seen discussed much, and which I found to be the most difficult, was the chemo brain. It is my understanding that the doses of chemo administered in conjunction with stem cell transplant would kill you if they didn't do the transplant, and I found my brain was affected enormously. I couldn't read and could scarcely follow a TV show. It took me hours to knit one row as I had to tear it our multiple times. Before the stem cell transplant, I had written a book chapter, and afterwards I couldn't even understand the page proofs of my own work. It took about four months post SCT to feel normal in that regard.
Another thing that made it difficult was coming to grips with the disease. Before the SCT, I had been dealing with the fractures and induction chemo and didn't really think about the long term implications. Only after the transplant did I fully realized that this disease truly doesn't go away. That was a tough thing to realize, especially feeling as terrible as I did. Who would want to live like that?
There are several antidotes. First, realize that you will feel better. Much better, almost back to your "real" self. It just takes several months. Second, find something to do every day that gives you pleasure. For me, it was listening to and eventually making music. Third, realize that this whole experience is actually an opportunity; any one of us could have been killed in a car accident instead of being diagnosed with myeloma. We have been graced with days and years longer to live, and it is good to live them well.
Best wishes,
Ginny
I believe two factors worsened my experience. First, I had 7 vertebrae fractures before the transplant, which led to deconditioning. Although kyphoplasties fixed the fractures and I was able to swim every day in a therapy pool the month before the SCT, I had nonetheless already lost significant muscle mass. Second, I had terrible thrush after SCT that took quite a while to cure with medications, which meant I had great difficulty eating at all. Altogether I lost 30 pounds and was quite weak.
Things that helped: finding something to eat. You won't get any energy without eating. For me, this was difficult because of the restrictions that excluded most of my favorite foods on top of taste problems and nausea. I ended up relying on Instant Breakfast.
Exercise also helped enormously. I began walking every day, starting with about 10 minutes and working up to 40. Walking outside in a pretty place was particularly renewing. I was not allowed to go into public places, but I did ride along when my husband rand errands and the fresh air was good.
Something I haven't seen discussed much, and which I found to be the most difficult, was the chemo brain. It is my understanding that the doses of chemo administered in conjunction with stem cell transplant would kill you if they didn't do the transplant, and I found my brain was affected enormously. I couldn't read and could scarcely follow a TV show. It took me hours to knit one row as I had to tear it our multiple times. Before the stem cell transplant, I had written a book chapter, and afterwards I couldn't even understand the page proofs of my own work. It took about four months post SCT to feel normal in that regard.
Another thing that made it difficult was coming to grips with the disease. Before the SCT, I had been dealing with the fractures and induction chemo and didn't really think about the long term implications. Only after the transplant did I fully realized that this disease truly doesn't go away. That was a tough thing to realize, especially feeling as terrible as I did. Who would want to live like that?
There are several antidotes. First, realize that you will feel better. Much better, almost back to your "real" self. It just takes several months. Second, find something to do every day that gives you pleasure. For me, it was listening to and eventually making music. Third, realize that this whole experience is actually an opportunity; any one of us could have been killed in a car accident instead of being diagnosed with myeloma. We have been graced with days and years longer to live, and it is good to live them well.
Best wishes,
Ginny
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
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