OK, it's here. Tomorrow I go to the City of Hope to check in for my stem cell transplant (SCT). All the harvesting is done ... enough for two transplants, all the tests done, my bag is packed, my knitting organized.
Those who have had one of these, or who have taken care of someone who has had one of these, any advice about how to handle what will happen? My sister and daughter keep asking me what I want them to do, when I need them to come with me, how much care I'm going to need ... yadda, yadda, ....
But I DON"T KNOW!
So far I've (according to everybody, including me, I guess) skated through this. I've even kept my hair ... until yesterday. I've been shedding like a Sheltie all day.
Anything?
Anybody?
Last minute Tips?
Hints?
Help?
Forums
7 posts
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Going in tomorrow for the SCT - any advice?
Hi Diana,
Transplant procedure is very simple. It is a 5 minutes infusion with an injection tube with your collected stem cells. Based on your body weight, they will infuse you certain amount of your harvested stem cell. Before this, they will connect to one of your ports, a saline bag, constantly they will be taking your blood pressure, temperature etc.
My husband went through tandem transplants - one in November 2011 and one in February 2012. We went in expecting complexities, but it turned out to be an anti- climax!
In fact, there was not a transplant physician present to do this. It was done by an RN, and 2 more nurses were present. They asked us if some medical students can observe the procedure. 3 students were there also. The actual procedure takes only 5 mins.
My husband was constantly on his iPhone messaging to his folks what was happening in that room and how he is feeling ... while the setup and the procedure was going on! We even took a video of the procedure to show to our extended family members to alleviate their fears.
So don't worry. It isn't going to be scary. I wish you well.
Transplant procedure is very simple. It is a 5 minutes infusion with an injection tube with your collected stem cells. Based on your body weight, they will infuse you certain amount of your harvested stem cell. Before this, they will connect to one of your ports, a saline bag, constantly they will be taking your blood pressure, temperature etc.
My husband went through tandem transplants - one in November 2011 and one in February 2012. We went in expecting complexities, but it turned out to be an anti- climax!
In fact, there was not a transplant physician present to do this. It was done by an RN, and 2 more nurses were present. They asked us if some medical students can observe the procedure. 3 students were there also. The actual procedure takes only 5 mins.
My husband was constantly on his iPhone messaging to his folks what was happening in that room and how he is feeling ... while the setup and the procedure was going on! We even took a video of the procedure to show to our extended family members to alleviate their fears.
So don't worry. It isn't going to be scary. I wish you well.
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pym - Name: pym
- Who do you know with myeloma?: spouse
- When were you/they diagnosed?: July 2011
Re: Going in tomorrow for the SCT - any advice?
This is probably a little late, but you will be there awhile and of course each individual will react differently. I think your sisters should be available if possible. In the early stages I didn't have any energy and, as you know, the nurses aren't there as servants.
My experience was a weakening and an overall feeling of indifference. I did gain ground day by day and never had any problems with mobility. I had a few transfusions immediately after, platelets mostly, but beyond that it was simply recovering from the effects of the chemo and getting my blood levels back to acceptable levels.
My experience was a weakening and an overall feeling of indifference. I did gain ground day by day and never had any problems with mobility. I had a few transfusions immediately after, platelets mostly, but beyond that it was simply recovering from the effects of the chemo and getting my blood levels back to acceptable levels.
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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: Going in tomorrow for the SCT - any advice?
The transplant part isn't scary, but I did smell a tomato smell almost immediately. My family says I smelled for a few days, from tomato to garlic to creamed corn!
I struggled with diarrhea throughout my weeks post transplant. Have extra soft toilet tissue available.
Nausea from the chemo hung around all too long, but I had nausea with my induction chemo as well. As my doctor said, you have declared yourself as a nausea patient. Eat small meals more frequently. I didn't have much of an appetite. Bring food you like from home. I hated Ensure, so I used Carnation Instant Breakfast.
I needed platelets and electrolytes, as most people do, and was given antibiotics once I spiked a fever (something else I did with induction). Don't worry, if possible. They will take good care of you. I heard City of Hope is wonderful, from a family who got treatment there.
As all the others said, everyone is different. Some sail through and others don't. Prayers that yours will be a textbook procedure.
BLessings!
I struggled with diarrhea throughout my weeks post transplant. Have extra soft toilet tissue available.
Nausea from the chemo hung around all too long, but I had nausea with my induction chemo as well. As my doctor said, you have declared yourself as a nausea patient. Eat small meals more frequently. I didn't have much of an appetite. Bring food you like from home. I hated Ensure, so I used Carnation Instant Breakfast.
I needed platelets and electrolytes, as most people do, and was given antibiotics once I spiked a fever (something else I did with induction). Don't worry, if possible. They will take good care of you. I heard City of Hope is wonderful, from a family who got treatment there.
As all the others said, everyone is different. Some sail through and others don't. Prayers that yours will be a textbook procedure.
BLessings!
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WeatherNurse13 - Name: Gracie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 10/2012
- Age at diagnosis: 49
Re: Going in tomorrow for the SCT - any advice?
Hi Diana. This is a bit late, but wishing you all the best for today and for your recovery.
One bit of advice – have the family there now. I had my SCT at Johns Hopkins, and I was required to have a caregiver with me. My daughter was with me the whole time, which was a blessing. I spiked a fever and had other serious side effects from the second round of chemo. She took care of me and insisted that Hopkins move me to in-patient care, where I stayed for a week. She also stayed with me after I returned home, even though my sister was also there.
Dana
One bit of advice – have the family there now. I had my SCT at Johns Hopkins, and I was required to have a caregiver with me. My daughter was with me the whole time, which was a blessing. I spiked a fever and had other serious side effects from the second round of chemo. She took care of me and insisted that Hopkins move me to in-patient care, where I stayed for a week. She also stayed with me after I returned home, even though my sister was also there.
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Going in tomorrow for the SCT - any advice?
I was getting my SCT nearly two years ago to the day at the same place you are now. I think the first thing people think of when getting ready to spend that much time in a hospital is to bring a lot of reading material. I did, but found I could hardly concentrate enough to read it. I would read a page and then could not remember anything about it. After the chemo drugs, opiates and anti-depressants for neuropathic pain, and more drugs for nausea from chemo, my mind was more fogged than I had realized. It did not matter much, the time and the days passed quicker than my previous hospital stays earlier in the year.
When the opportunity arises, get out of bed and walk around as much as you can. I often felt completely exhausted and fatigued most of time, but I would try to walk around and do laps on my hospital floor several times a day. I would come back to my room spent and have to rest or sleep for a couple of hours, but it is worth doing. I had nowhere to go anyway. It also gives the hospital staff and opportunity to go in a clean the room and change the sheets without you there and bothering you.
It can be easy to fall into a routine of staying in bed all day because of being fatigued, but I found that if I waited till I felt I had the energy to get up out of bed to walk and get some exercise, that day would be a long time in coming. This was the case for some time after I got back home as well.
I also tried to get a shower every day even if I was really fatigued. A good shower would leave me feeling a bit more energized and refreshed. They would also change the sheets while I was showering and it was nice having a clean bed especially when you hair is falling out.
As mentioned above already, let the nurses know ahead of time when you like to shower and get out of the room so they can plan doing the cleaning and linen changes around these times. It is good to get in a regular schedule for these activities.
The melphalan gave me a lot of nausea and they offered three different types of medications at City of Hope to help with it. Try all three to find out which works for you best. I would find that one seemed to work best before sleeping and another during the day. Also, if you are dependent on opiates as I was at this time, the nausea meds can help with the withdrawal symptoms, so if you are no longer in bad pain it can be a good time to try and get off these drugs. I was able to pretty easily, even though I had failed to when I had tried a month earlier before the SCT.
It also helps mentally to get out of the room and see the outside world some. I had my SCT at City of Hope where you are getting yours. On the north side of the hospital floor where the elevators are, there is a big high ceiling lounge area with ceiling-to-wall glass windows that look out over the San Bernardino mountain range. They hold group activities for the SCT patients in the room every day to help pass the time if you have the energy. I did not, but I spent a lot of time in that room just sitting, looking out at the mountains, the people down below going about their normal lives, the changing weather, the sun going down, and reminding myself why I was going through all of this and looking forward to getting out of there as soon as I could and getting back to a normal life again myself. I think if I had stayed in my room all day I would have gotten really depressed.
When the opportunity arises, get out of bed and walk around as much as you can. I often felt completely exhausted and fatigued most of time, but I would try to walk around and do laps on my hospital floor several times a day. I would come back to my room spent and have to rest or sleep for a couple of hours, but it is worth doing. I had nowhere to go anyway. It also gives the hospital staff and opportunity to go in a clean the room and change the sheets without you there and bothering you.
It can be easy to fall into a routine of staying in bed all day because of being fatigued, but I found that if I waited till I felt I had the energy to get up out of bed to walk and get some exercise, that day would be a long time in coming. This was the case for some time after I got back home as well.
I also tried to get a shower every day even if I was really fatigued. A good shower would leave me feeling a bit more energized and refreshed. They would also change the sheets while I was showering and it was nice having a clean bed especially when you hair is falling out.
As mentioned above already, let the nurses know ahead of time when you like to shower and get out of the room so they can plan doing the cleaning and linen changes around these times. It is good to get in a regular schedule for these activities.
The melphalan gave me a lot of nausea and they offered three different types of medications at City of Hope to help with it. Try all three to find out which works for you best. I would find that one seemed to work best before sleeping and another during the day. Also, if you are dependent on opiates as I was at this time, the nausea meds can help with the withdrawal symptoms, so if you are no longer in bad pain it can be a good time to try and get off these drugs. I was able to pretty easily, even though I had failed to when I had tried a month earlier before the SCT.
It also helps mentally to get out of the room and see the outside world some. I had my SCT at City of Hope where you are getting yours. On the north side of the hospital floor where the elevators are, there is a big high ceiling lounge area with ceiling-to-wall glass windows that look out over the San Bernardino mountain range. They hold group activities for the SCT patients in the room every day to help pass the time if you have the energy. I did not, but I spent a lot of time in that room just sitting, looking out at the mountains, the people down below going about their normal lives, the changing weather, the sun going down, and reminding myself why I was going through all of this and looking forward to getting out of there as soon as I could and getting back to a normal life again myself. I think if I had stayed in my room all day I would have gotten really depressed.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Going in tomorrow for the SCT - any advice?
Now that your transplant is done, you will need a caregiver constantly with you.
My husband went through the predicted (by the BMT team) ten days, the graph of counts going down hitting a low of WBC 100 and platelets 7000 on Day 8 or 9 during both the transplants.
He got fever of 101.6 F (38.7 C). Post transplant, for 30 days, I was taking him to the BMT center at 7 a.m. and he would be done only by 1 - 2 p.m. everyday after detailed blood tests, potassium infusions almost everyday, platelets infusions on 2 or 3 days, antibiotics for infections. He used to be very fatigued, had neuropathy pain after the first transplant. Had nausea problem in the first week post transplant. He lost his hair by the end of 1st month. All the while, his energy was slowly built up by proper diet. He started working halftime after 45 days. He is now working full time.
Take good care of proper diet. You need lot of proteins. It is good to have family and friends visit, but anybody having a cold or cough, etc., has to be away from you. This holds for at least 6 months.
Good luck.
My husband went through the predicted (by the BMT team) ten days, the graph of counts going down hitting a low of WBC 100 and platelets 7000 on Day 8 or 9 during both the transplants.
He got fever of 101.6 F (38.7 C). Post transplant, for 30 days, I was taking him to the BMT center at 7 a.m. and he would be done only by 1 - 2 p.m. everyday after detailed blood tests, potassium infusions almost everyday, platelets infusions on 2 or 3 days, antibiotics for infections. He used to be very fatigued, had neuropathy pain after the first transplant. Had nausea problem in the first week post transplant. He lost his hair by the end of 1st month. All the while, his energy was slowly built up by proper diet. He started working halftime after 45 days. He is now working full time.
Take good care of proper diet. You need lot of proteins. It is good to have family and friends visit, but anybody having a cold or cough, etc., has to be away from you. This holds for at least 6 months.
Good luck.
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pym - Name: pym
- Who do you know with myeloma?: spouse
- When were you/they diagnosed?: July 2011
7 posts
• Page 1 of 1