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SCT Consult - What are some key questions to ask?
My husband has been receiving treatment since late July 2013. He appears to be responding well to Velcade, Dex and Cytoxan. He is going for a SCT consultation this week. What are some key questions you would ask the SCT doctors? We want to gather as much information as possible.
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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: SCT Consult - What are some key questions to ask?
Hi LadyLib,
When EJ was preparing for his SCT we found that the transplant team was very knowledgeable and they walked us through the entire process from beginning to end. They gave us a schedule that showed when we needed to come to the hospital for tests (including a psych eval!), when he needed to get a catheter implanted for the harvesting, when neupogen shots would start, when he needed to show up to the hospital for the transplant, what he could do to minimize mouth sores, etc. (I could go on...). They were so well prepared that by the end I had very few questions!
As we were entering the hospital, the best piece of advice I got was from one of the nurses -- basically she said that they were prepared for anything that would happen to him, but that I needed to understand there would be a few potholes along the way that they could not anticipate, which was very true. EJ did not react well to one of the drugs they gave him for anxiety so they had to change him to another med, and he had a severe allergic reaction to some of the antibiotics and wound up in cardiac intensive care for a while.
Even with the detour to the cardiac ICU, the whole process was less dramatic than I anticipated. Any discomfort that EJ was feeling from mouth sores or nausea was very well controlled, and the anti-anxiety drugs really helped make the whole thing bearable.
The one thing that surprised me...and I really wasn't prepared for, as silly as this sounds, was the amount of laundry I had to do for him! EJ is very tall, and he was more comfortable in his own clothes. But the hospital wanted him to take a shower and dress in clean clothes everyday! I found I was doing a load of laundry everynight after a long day at work, and then visiting him in the hospital. By the end of week two, this routing was getting tiring...
Hope that helps,
Lyn
When EJ was preparing for his SCT we found that the transplant team was very knowledgeable and they walked us through the entire process from beginning to end. They gave us a schedule that showed when we needed to come to the hospital for tests (including a psych eval!), when he needed to get a catheter implanted for the harvesting, when neupogen shots would start, when he needed to show up to the hospital for the transplant, what he could do to minimize mouth sores, etc. (I could go on...). They were so well prepared that by the end I had very few questions!
As we were entering the hospital, the best piece of advice I got was from one of the nurses -- basically she said that they were prepared for anything that would happen to him, but that I needed to understand there would be a few potholes along the way that they could not anticipate, which was very true. EJ did not react well to one of the drugs they gave him for anxiety so they had to change him to another med, and he had a severe allergic reaction to some of the antibiotics and wound up in cardiac intensive care for a while.
Even with the detour to the cardiac ICU, the whole process was less dramatic than I anticipated. Any discomfort that EJ was feeling from mouth sores or nausea was very well controlled, and the anti-anxiety drugs really helped make the whole thing bearable.
The one thing that surprised me...and I really wasn't prepared for, as silly as this sounds, was the amount of laundry I had to do for him! EJ is very tall, and he was more comfortable in his own clothes. But the hospital wanted him to take a shower and dress in clean clothes everyday! I found I was doing a load of laundry everynight after a long day at work, and then visiting him in the hospital. By the end of week two, this routing was getting tiring...
Hope that helps,
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: SCT Consult - What are some key questions to ask?
Hi LadyLib. My experience was similar to Lyn's, except that I didn't react to any of the drugs. I had my SCT at Johns Hopkins, and they sent me a notebook of material to read ahead of time, schedules, and housing information. If you don't get this ahead of time, ask for a schedule so you understand the steps in the process, what is done in the hospital, what is done at home, and where you have to be when.
If you don't receive housing information, ask about it. Most of the time that we had to be in Baltimore, we lived in an apartment across from the hospital. For some of my prep tests, though, I stayed in hotels with whom Hopkins had lodging rate agreements.
You should also be give a disclosure form. It is unnerving, but you need to know about the (remote) possibilities. Again, if it is not sent to you ahead of time, ask questions about side effects.
Also ask the social workers questions. I was wrestling with the question of who should be with me. The social workers affirmed my thinking that my elderly parents did not belong with me. I needed to focus on myself and not worry about my dad's heart or my mom's walking problems -- and not feel guilty about saying no. This was helpful when I told my parents why they couldn't be there with me.
Dana
If you don't receive housing information, ask about it. Most of the time that we had to be in Baltimore, we lived in an apartment across from the hospital. For some of my prep tests, though, I stayed in hotels with whom Hopkins had lodging rate agreements.
You should also be give a disclosure form. It is unnerving, but you need to know about the (remote) possibilities. Again, if it is not sent to you ahead of time, ask questions about side effects.
Also ask the social workers questions. I was wrestling with the question of who should be with me. The social workers affirmed my thinking that my elderly parents did not belong with me. I needed to focus on myself and not worry about my dad's heart or my mom's walking problems -- and not feel guilty about saying no. This was helpful when I told my parents why they couldn't be there with me.
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: SCT Consult - What are some key questions to ask?
Hi LadyLib,
I was trying to think back to what questions I asked - I think I was just told stuff (some of it I can remember others I can't). The Cancer Council in Australia has a program called Cancer Connect. This is when a person who has already undergone the procedure will ring you up and talk you through it (a bit like this website). I asked for someone that was my age that had had an SCT - it was great talking to her.
As for questions to ask your consultant - Questions that come to mind are; How long will be the hospital stay? What are the possible complications? Are visitors allowed? What precautions are taken to reduce infection risk? What days will he be most vulnerable? More importantly get them to explain the procedure to you again and if in doubt about any part - ask again (it might help if you take a notebook with specific questions in it).
Everybodys experience in having an SCT is going to be different. The treatment will basically be the same, the majority of us will be hospitalised the same way and we all hope for the same result but along the way different things may happen. Its a bit like childbirth in that there are the horror stories, the really easy births, the average ones and the lucky ones.
I hope your husbands SCT is a really easy lucky one,
Libby
I was trying to think back to what questions I asked - I think I was just told stuff (some of it I can remember others I can't). The Cancer Council in Australia has a program called Cancer Connect. This is when a person who has already undergone the procedure will ring you up and talk you through it (a bit like this website). I asked for someone that was my age that had had an SCT - it was great talking to her.
As for questions to ask your consultant - Questions that come to mind are; How long will be the hospital stay? What are the possible complications? Are visitors allowed? What precautions are taken to reduce infection risk? What days will he be most vulnerable? More importantly get them to explain the procedure to you again and if in doubt about any part - ask again (it might help if you take a notebook with specific questions in it).
Everybodys experience in having an SCT is going to be different. The treatment will basically be the same, the majority of us will be hospitalised the same way and we all hope for the same result but along the way different things may happen. Its a bit like childbirth in that there are the horror stories, the really easy births, the average ones and the lucky ones.
I hope your husbands SCT is a really easy lucky one,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
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