My husband has been viewed as a possible candidate for stem cell transplant. I have read the numerous stories online, but am somewhat confused about how the process works and the length of time for each process. Can forum members tell me any more details about what to expect? Just need some reassurance and more information on actual experiences (not just online procedures).
What is the harvest process? How long did it take? Does it make you ill? Was it outpatient? How long is the chemo/radiation associated with SCT? How long does it take to introduce cells? What is recovery period like? How soon is one back to "normal"? Do you lose hair? How long does one stay tired? Just need info ... help!
Forums
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Stem cell transplant - what to expect?
Hi, LadyLib,
Don't worry, it will be over sooner than you think!
I had my ACST started on May 2, 2013. The harvest was one week before the D-day. It took 2 days to harvest, because my doctor wanted to collect enough for two ASCTs. My doctor said it might take up to 4 days depending on the patient. Four days prior to the harvest, my doctor prescribed shots everyday to booster the stem cells. About two days before the shots they put a tri-port in to facilitate the process. The tri-port was used for harvest and ASCT. Each day during harvest was about 7 to 8 hours long. I came to hospital early in the morning and the procedure will last to evening. I went home every day. The machine used two tails of the tri-port: one for drawing the blood and the other for returning the blood. I just lay down on the bed. The nurse would came every hour to check vital sign.
Two day before ASCT I was move to the hospital for preparation. The hospital was very careful about the infection. They drew several bottles of blood from the port and arms for screening. The room is special designed for the purpose. The first day the doctor started the melphalan 200mg one time and waited for 48 hours then reinfused the stem cells. Of course, doctors continued to adminster antibiotics 24 hours round the clock for the fear of infection.
Once chemo in, I started nausea, vomiting, loss of appetite, twitching, and diarrhea. They were continuing check blook for white cell, red cell and platelets for infusion if necessary. For two weeks after ASCT, doctors decided I was well enough to check out. During this two weeks, I still can get up and walk around without difficult but weaker and often need rest. The hair would not lose until one month later. But the best way is to shave the hair before hospitalized because for easy washing everyday. It was not over yet and it may take two years to recover after ASCT. Because after ASCT, all my immune capability was zero and my immune memory was totally erased. And it needed time to rebuild. The two years is the period for immunization again. I had cardinal infection, hospitalied for one week six month after. It was another round of anti-biotics infusion for one month. I still have problem on tasting food but appetite is okay now. I am looking forward to get the end of two years immunization.
Sorry for my English, best wishes to you and your husband!
Don't worry, it will be over sooner than you think!
I had my ACST started on May 2, 2013. The harvest was one week before the D-day. It took 2 days to harvest, because my doctor wanted to collect enough for two ASCTs. My doctor said it might take up to 4 days depending on the patient. Four days prior to the harvest, my doctor prescribed shots everyday to booster the stem cells. About two days before the shots they put a tri-port in to facilitate the process. The tri-port was used for harvest and ASCT. Each day during harvest was about 7 to 8 hours long. I came to hospital early in the morning and the procedure will last to evening. I went home every day. The machine used two tails of the tri-port: one for drawing the blood and the other for returning the blood. I just lay down on the bed. The nurse would came every hour to check vital sign.
Two day before ASCT I was move to the hospital for preparation. The hospital was very careful about the infection. They drew several bottles of blood from the port and arms for screening. The room is special designed for the purpose. The first day the doctor started the melphalan 200mg one time and waited for 48 hours then reinfused the stem cells. Of course, doctors continued to adminster antibiotics 24 hours round the clock for the fear of infection.
Once chemo in, I started nausea, vomiting, loss of appetite, twitching, and diarrhea. They were continuing check blook for white cell, red cell and platelets for infusion if necessary. For two weeks after ASCT, doctors decided I was well enough to check out. During this two weeks, I still can get up and walk around without difficult but weaker and often need rest. The hair would not lose until one month later. But the best way is to shave the hair before hospitalized because for easy washing everyday. It was not over yet and it may take two years to recover after ASCT. Because after ASCT, all my immune capability was zero and my immune memory was totally erased. And it needed time to rebuild. The two years is the period for immunization again. I had cardinal infection, hospitalied for one week six month after. It was another round of anti-biotics infusion for one month. I still have problem on tasting food but appetite is okay now. I am looking forward to get the end of two years immunization.
Sorry for my English, best wishes to you and your husband!
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kuantinglin - Name: K.T.
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 09/2011
- Age at diagnosis: 59
Re: Stem cell transplant - what to expect?
My stem cell transplants were outpatient at Vanderbilt University Clinic BUT I had to stay nearby in a very controlled environment (I stayed in an apt. across the street from the hospital since I live about 3 hours away; the social worker at Vandy arranged all that). Each morning, I would go over to the SCT clinic. They would check my vitals, my weight, my log of what I ate/urinated, etc. and do blood tests. Based on the results of the tests, they would administer through IV any nutrients, etc. that I needed. Then I would return to my apartment, usually a couple hours later.
If I went outside, I had to wear a mask, I had a restricted diet, etc. I had a lot of antibiotic/antifungal prescriptions to keep track of, and mouth washes to keep from getting sores in my mouth. If I had a fever over 100.5, I had to be admitted to the hospital. This happened once during each of my two SCTs. I'd stay in the hospital a few days while getting antibiotics, etc. until my fever went down.
The rest of my experience sounded similar to the other post. My collection took a few hours. I actually was able to collect enough stem cells for both transplants in one sitting. It was not a discomfort at all. Administering the stem cells back into my body also took an hour or so. Since they had been frozen, it was a bit uncomfortable when they were returned to my body since the liquid was very cold, but not that big of deal.
A stem cell collection and transplant sounds so futuristic, but the actual procedures (from the patient's standpoint) are rather simple; it is the recovery after the chemo that is the most challenging part, since your whole immune system has been wiped out. My SCTs were done in 2006, and I'm still in complete remission.
If I went outside, I had to wear a mask, I had a restricted diet, etc. I had a lot of antibiotic/antifungal prescriptions to keep track of, and mouth washes to keep from getting sores in my mouth. If I had a fever over 100.5, I had to be admitted to the hospital. This happened once during each of my two SCTs. I'd stay in the hospital a few days while getting antibiotics, etc. until my fever went down.
The rest of my experience sounded similar to the other post. My collection took a few hours. I actually was able to collect enough stem cells for both transplants in one sitting. It was not a discomfort at all. Administering the stem cells back into my body also took an hour or so. Since they had been frozen, it was a bit uncomfortable when they were returned to my body since the liquid was very cold, but not that big of deal.
A stem cell collection and transplant sounds so futuristic, but the actual procedures (from the patient's standpoint) are rather simple; it is the recovery after the chemo that is the most challenging part, since your whole immune system has been wiped out. My SCTs were done in 2006, and I'm still in complete remission.
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lyndaclark - Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2005
- Age at diagnosis: 49
Re: Stem cell transplant - what to expect?
My stem cell transplant was on December 7 2012 . Collection took two days 7 to 8 hours a day out patient . went in Hospital Dec 4 . Had two 15 min infusions of chemo one on the 4th and one on the 5th. The transplant itself is piece of cake thanks to my port put in before collection. I was in hospital 16 days. The only side affect that was really bad was the diarrhea. I never ran a fever or vomited.
When I came home, I got tired really fast buy didn't feel bad. Took me about 3 months to start getting my strength back. I forgot -- I did loose all my hair on Dec 22 . Its growing back very very curly, even though I have always had straight hair.
I am now 100% in remission with no maintenance. I get infusions once a month of Zometa for bone regrowth. I have aches and pains, probably always will, but I thank God for all my doctors at Shands Hospital in Gainesville Florida. Good Luck.
When I came home, I got tired really fast buy didn't feel bad. Took me about 3 months to start getting my strength back. I forgot -- I did loose all my hair on Dec 22 . Its growing back very very curly, even though I have always had straight hair.
I am now 100% in remission with no maintenance. I get infusions once a month of Zometa for bone regrowth. I have aches and pains, probably always will, but I thank God for all my doctors at Shands Hospital in Gainesville Florida. Good Luck.
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Anonymous
Re: Stem cell transplant - what to expect?
This discussion here in the forum has some useful information about the stem cell harvesting process:
https://myelomabeacon.org/forum/auto-stem-cell-transplant-harvest-what-to-expect-t1456.html
It includes feedback from one of the forum's doctors and a couple of different forum member experiences. You may find it helpful.
https://myelomabeacon.org/forum/auto-stem-cell-transplant-harvest-what-to-expect-t1456.html
It includes feedback from one of the forum's doctors and a couple of different forum member experiences. You may find it helpful.
Re: Stem cell transplant - what to expect?
I had my SCT in July 2009. The whole procedure was outpatient. I was given two shot a day for about 10 days to increase stem cell production before the stem cell collection. It took 4 hours a day for 4 days to collect enough stem cell for two procedures.
I finished the collection on a Thursday, and on the following Monday I was given a heavy dose chemo shot. On the following Wednesday I was admitted to the hospital to receive my stem cells. After I received my stem cells I was released after about 4 hours.
For the next few weeks I had to go to the clinic everyday for about 7-8 hours. Every day was about the same. I would be weighed, had my temperature taken, blood pressure measured, and blood drawn. Then I would be hooked up to an IV and would receive about 2 liters of fluid.
My wife I and followed the doctors directions very carefully and the good news is I didn't have to go into the hospital because of an infection. I did lose my hair, but I never got sick. I did have mouth sores for about a week. Also, the average stay was 54 days after SCT, and I was told that I was going home after 28 days.
So follow the doctor directions and things shouldn't be too bad. Good luck!
I finished the collection on a Thursday, and on the following Monday I was given a heavy dose chemo shot. On the following Wednesday I was admitted to the hospital to receive my stem cells. After I received my stem cells I was released after about 4 hours.
For the next few weeks I had to go to the clinic everyday for about 7-8 hours. Every day was about the same. I would be weighed, had my temperature taken, blood pressure measured, and blood drawn. Then I would be hooked up to an IV and would receive about 2 liters of fluid.
My wife I and followed the doctors directions very carefully and the good news is I didn't have to go into the hospital because of an infection. I did lose my hair, but I never got sick. I did have mouth sores for about a week. Also, the average stay was 54 days after SCT, and I was told that I was going home after 28 days.
So follow the doctor directions and things shouldn't be too bad. Good luck!
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Jon Larson
Re: Stem cell transplant - what to expect?
It all sounds kind of scary and it's easy to stress yourself out, but don't! I did it for a little bit and i'm still paying for it lol even though my husband is now almost 6 months post transplant.
He went through an autologous that was pretty decent. He had melphalan 2 days before. That was pretty rough since it wipes out your entire immune system. The biggest side effects he had were appetite loss, staying hydrated, nausea and weakness due to the chemo. He was considered for an outpatient transplant since we live so close to MD Anderson. For that I was extremely thankful because the stress on my husband was enormous in wondering how his family would do without him.
We had to go back every other day to do blood work and infusions. He had to do a platelet and blood transfusion about a week post transplant and had a hydration bag for two weeks till he could drink enough fluids by himself. After he got those infusions, about 2 weeks post transplant, he started grafting rather quickly. He ended up getting neutropenic fever (sign of grafting) and had to be hospitalized for 3 days to make sure that he didn't get any infections since he was grafting super fast.
Each day it does get better, but you have to make sure your husband moves around and walks at least 5 minutes a day to help get his blood running. He's not going to want to do anything, because he's going to be super tired, super cranky, and very much like a baby but in an adult's body. At MD Anderson, the 17th/18th floors had competitions on who could walk the most each week. They also had stuff for the holidays to help make their stay as best as they could.
Coming from a caregiver myself, don't stress yourself out even though its hard to stay calm. If you have family that can help you, please allow them to, as it helps you out so much. Even 6 months after transplant, my husband is still tired and has his days, but he's made it through and his doctors are very happy with the outcome.
Stay positive, find things to do for yourself while your husband sleeps, and PRAY. "I can do all things through Christ who gives me strength" Philippians 4:13
He went through an autologous that was pretty decent. He had melphalan 2 days before. That was pretty rough since it wipes out your entire immune system. The biggest side effects he had were appetite loss, staying hydrated, nausea and weakness due to the chemo. He was considered for an outpatient transplant since we live so close to MD Anderson. For that I was extremely thankful because the stress on my husband was enormous in wondering how his family would do without him.
We had to go back every other day to do blood work and infusions. He had to do a platelet and blood transfusion about a week post transplant and had a hydration bag for two weeks till he could drink enough fluids by himself. After he got those infusions, about 2 weeks post transplant, he started grafting rather quickly. He ended up getting neutropenic fever (sign of grafting) and had to be hospitalized for 3 days to make sure that he didn't get any infections since he was grafting super fast.
Each day it does get better, but you have to make sure your husband moves around and walks at least 5 minutes a day to help get his blood running. He's not going to want to do anything, because he's going to be super tired, super cranky, and very much like a baby but in an adult's body. At MD Anderson, the 17th/18th floors had competitions on who could walk the most each week. They also had stuff for the holidays to help make their stay as best as they could.
Coming from a caregiver myself, don't stress yourself out even though its hard to stay calm. If you have family that can help you, please allow them to, as it helps you out so much. Even 6 months after transplant, my husband is still tired and has his days, but he's made it through and his doctors are very happy with the outcome.
Stay positive, find things to do for yourself while your husband sleeps, and PRAY. "I can do all things through Christ who gives me strength" Philippians 4:13
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snp83
Re: Stem cell transplant - what to expect?
When I was scheduled at University of Nebraska Medical Center, they actually gave us a complete tour of the area I would be in. Before the transplant I injected Neupogen to myself at home and when the date came for the collection they said it could take 4 days. It took me about 6 hours in one day, so they moved my transplant day up, and I am glad to say I am 15 months post transplant and only taking Revlimid as a maintenance drug and get IV of Zometa once a month.
I am back to work , gained my weight, and my hair is double what it was before. Things are going good and I look forward to many years of getting better.
I am back to work , gained my weight, and my hair is double what it was before. Things are going good and I look forward to many years of getting better.
Re: Stem cell transplant - what to expect?
Autologous Stem Cell Transplantation at age 52. I had been through three rounds of chemo. Had my port removed and enjoyed a break for three months before the transplant process.
The gathering of cells was no big deal...3-5 days outpatient.
Inserting a new port and receiving the high-dose cytoxin was more engaging--my hair came out in the shower the next day.
The actual transplant was done inpatient. It was underwhelming--an injection into the IV line. I did feel a wave of nausea initially, but then nothing.
A few days later the fun began--nausea and diarrhea...no appetite for food and water tasted metallic.
I lost about 15 pounds.
Feeling much better a couple weeks later and gradually improvement kept coming. After 3-1/2 weeks inpatient, I came home, but had help, as I was quite weak. I recommend inpatient if you can arrange that. Also, have help when you are first sent home.
About 16 months later I was considered in total remission...that was 2005.
Never expected see age 60, but here I am at 61 and I remain well.
I wish you the best!
The gathering of cells was no big deal...3-5 days outpatient.
Inserting a new port and receiving the high-dose cytoxin was more engaging--my hair came out in the shower the next day.
The actual transplant was done inpatient. It was underwhelming--an injection into the IV line. I did feel a wave of nausea initially, but then nothing.
A few days later the fun began--nausea and diarrhea...no appetite for food and water tasted metallic.
I lost about 15 pounds.
Feeling much better a couple weeks later and gradually improvement kept coming. After 3-1/2 weeks inpatient, I came home, but had help, as I was quite weak. I recommend inpatient if you can arrange that. Also, have help when you are first sent home.
About 16 months later I was considered in total remission...that was 2005.
Never expected see age 60, but here I am at 61 and I remain well.
I wish you the best!
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BuffaloPat - Name: Pat
- When were you/they diagnosed?: 2003
- Age at diagnosis: 51
Re: Stem cell transplant - what to expect?
I had my ASCT in May, 2013. Experiences were similar to what others have posted. But I want to add one thing that nobody explained to me beforehand that would have been good to know.
Before the stem cell collection, I had Cytoxan (2 day, 1 night inpatient stay), and then injected myself with Neupogen for about 10 days. I'd read that "bone pain" was a potential side effect of the Neupogen, but I didn't really know what that meant, so I didn't pay much attention to it.
I found out.
One night a little before the collection, I got pain in my lower back and pelvis area. At its worst, it was a deep throbbing pain that I felt with every heartbeat. It was pretty intense, and I didn't exactly know what was going on, because nobody had explained that this was what "bone pain" would feel like. Several Tylenol eased it enough that I got a little sleep that night. Then, by the next morning, it was much better and did not recur.
Later I was told that the pain came because the Neupogen was working big time, and the new cells were packing into my bone marrow. I produced 23 million stem cells during one 3 or 4-hour collection period, so I only needed that one collection session.
One other thing, on Day 8 I came down with an E coli infection that got into my bloodstream and caused septic shock. Fortunately, I was inpatient for the transplant and recovery, so the nurses and doctors were on top of the infection quickly. I needed to go to the ICU for three days, but recovered pretty quickly. The infection slowed the blood count coming back up by a week or 10 days, so my hospital stay was 4 weeks and 1 day.
I was back working half-time from home on Day 40 (post transplant), and back running on Day 45. I'm now working full-time, and my longest recent run is 8 miles. I felt like I was pretty much back to normal by around Day 90.
Now I'm in the consolidation chemo treatment phase, and that has been going well.
Good luck!
Before the stem cell collection, I had Cytoxan (2 day, 1 night inpatient stay), and then injected myself with Neupogen for about 10 days. I'd read that "bone pain" was a potential side effect of the Neupogen, but I didn't really know what that meant, so I didn't pay much attention to it.
I found out.
One night a little before the collection, I got pain in my lower back and pelvis area. At its worst, it was a deep throbbing pain that I felt with every heartbeat. It was pretty intense, and I didn't exactly know what was going on, because nobody had explained that this was what "bone pain" would feel like. Several Tylenol eased it enough that I got a little sleep that night. Then, by the next morning, it was much better and did not recur.
Later I was told that the pain came because the Neupogen was working big time, and the new cells were packing into my bone marrow. I produced 23 million stem cells during one 3 or 4-hour collection period, so I only needed that one collection session.
One other thing, on Day 8 I came down with an E coli infection that got into my bloodstream and caused septic shock. Fortunately, I was inpatient for the transplant and recovery, so the nurses and doctors were on top of the infection quickly. I needed to go to the ICU for three days, but recovered pretty quickly. The infection slowed the blood count coming back up by a week or 10 days, so my hospital stay was 4 weeks and 1 day.
I was back working half-time from home on Day 40 (post transplant), and back running on Day 45. I'm now working full-time, and my longest recent run is 8 miles. I felt like I was pretty much back to normal by around Day 90.
Now I'm in the consolidation chemo treatment phase, and that has been going well.
Good luck!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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