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22 days post stem cell transplant - now what?
My husband is 22 days post transplant. They are about to take his port out in a couple of days. I need to know what others experienced between Day 30 and Day 100, i.e. what tests? Any medications? What kind of visits, work, appointments do doctors usually do as a follow up to transplant besides the full rounds of tests at Day 100.
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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: 22 days post stem cell transplant - now what?
Each transplant center and oncologist has a different protocol post transplant. I had blood work done twice a week for 4 weeks and saw my oncologist twice a week for 2 weeks and then once a week for 4 weeks and then every other week for several weeks. Gradually the appointments with my oncologist became fewer. I have blood work done every time I see my oncologist.
At first I was pretty tired when I went home and needed to rest or nap a few times a day. This gradually improved. I went out most days either for a walk or to go shopping, to the movies or out to eat. I did those things on days that I wasn't going to see my doctor. These trips really fatigued me, but it felt good to get out of the house. By 6 weeks post transplant I was able to drive again.
I went back to work 3 half days a week at week 10 and then full time at week 12. Because I had a fairly physical job I was wiped out by the end of the day and went to bed usually shortly after having dinner. Over the next few months this gradually improved although I found that I had to go to bed earlier than I used to prior to the transplant. By the end of a work week I was usually wiped out.
Other than the medications that were prescribed post transplant prophylactically (sp?) I wasn't on any medications. Those drugs were discontinued 4 weeks after my transplant because I developed an overall body rash and my oncologist thought the medications might be the cause. I even had stopped my blood pressure medication post transplant because my blood pressure was really low. At 100 days I started a maintenance dose of Revlimid, 10 mg daily, but it was discontinued 5 days later because I had a bad reaction to it. So, I wasn't on any medications for several more months until my blood pressure started to rise again. I restarted my bp meds, but ended up having to ask my primary doctor to lower the dose because my previous dose was lowering my BP too much and I was often light headed. Oh, I did restart Zometa infusions around the 100 day mark.
I didn't have a bone marrow biopsy or any other tests done except for the full panel of blood work that I have done every 6 weeks. My m-spike didn't begin to decrease from pre-transplant levels until 5 months post transplant. I reached CR about 7 months post transplant.
How is your husband doing?
Nancy in Phila
At first I was pretty tired when I went home and needed to rest or nap a few times a day. This gradually improved. I went out most days either for a walk or to go shopping, to the movies or out to eat. I did those things on days that I wasn't going to see my doctor. These trips really fatigued me, but it felt good to get out of the house. By 6 weeks post transplant I was able to drive again.
I went back to work 3 half days a week at week 10 and then full time at week 12. Because I had a fairly physical job I was wiped out by the end of the day and went to bed usually shortly after having dinner. Over the next few months this gradually improved although I found that I had to go to bed earlier than I used to prior to the transplant. By the end of a work week I was usually wiped out.
Other than the medications that were prescribed post transplant prophylactically (sp?) I wasn't on any medications. Those drugs were discontinued 4 weeks after my transplant because I developed an overall body rash and my oncologist thought the medications might be the cause. I even had stopped my blood pressure medication post transplant because my blood pressure was really low. At 100 days I started a maintenance dose of Revlimid, 10 mg daily, but it was discontinued 5 days later because I had a bad reaction to it. So, I wasn't on any medications for several more months until my blood pressure started to rise again. I restarted my bp meds, but ended up having to ask my primary doctor to lower the dose because my previous dose was lowering my BP too much and I was often light headed. Oh, I did restart Zometa infusions around the 100 day mark.
I didn't have a bone marrow biopsy or any other tests done except for the full panel of blood work that I have done every 6 weeks. My m-spike didn't begin to decrease from pre-transplant levels until 5 months post transplant. I reached CR about 7 months post transplant.
How is your husband doing?
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: 22 days post stem cell transplant - now what?
Lady Lib,
It is good to check and compare with other people about their experiences treatment post SCT, but I hope your own doctor is answering those questions for you and is explain what is next for your in the treatment process?
It is good to check and compare with other people about their experiences treatment post SCT, but I hope your own doctor is answering those questions for you and is explain what is next for your in the treatment process?
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: 22 days post stem cell transplant - now what?
Hi LadyLib. When I left Johns Hopkins, I had a list of things they told me to do. I spent my first couple of weeks at home gradually getting healthy again and getting my energy back. I saw my home oncologist. At one point, I had a blood transfusion because my red count had dropped. Eventually, I started on Revlimid as my maintenance drug (and took it for a little more than 2 1/2 years).
I also started getting childhood vaccinations all over again. I understand that there is some disagreement about whether this should be done post SCT. I spent two years getting vaccines only to find out that they didn't take.
I also started back to work -- part time, then full time. My employer has a wonderful telework policy, which really helped.
I also started getting childhood vaccinations all over again. I understand that there is some disagreement about whether this should be done post SCT. I spent two years getting vaccines only to find out that they didn't take.
I also started back to work -- part time, then full time. My employer has a wonderful telework policy, which really helped.
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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: 22 days post stem cell transplant - now what?
NSTEWART - thanks for asking about my husband. He had his transplant on December 30th. He did exceptionally well. He did have to get platelets twice and blood once. Other than that, he really was not ill. He was blessed. He was working out again Day 12 or so and has been going strong. They were meeting with him everyday (Day 0 - 12), then they started every other day, then once a week. He is getting his port out tomorrow (Day 23). He is grateful as he wants to continue his weights, etc. I was worried going in, but it was better than I anticipated by far.
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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
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