My mom has late stage 1 early stage 2 multiple myeloma. The initial treatment plan (which has not started yet) will be chemotherapy (2 different types of pills and another type that will be delivered intervenously); 4 cycles. Not a super strong chemotherapy but enough to put cancer into remission. There should be no hair loss from this treatment and minimal side effects.
At the beginning of the 4th cycle of chemotherapy, stem cells will be collected and frozen until ready for use. The doctor advised that mom would be in the hospital for about 12 days and may need blood transfusions and platlet transfusions during her hospital stay. Once she is home he said that she cannot go to work, but could work from home. He actually made the recovery sound quite simple.
It occured to me when I was reading a book for caregivers how very serious home recovery is. Although the transplant is probably 4 months down the road I would like to prepare myself for what's to come.
Can somebody please provide me with their stories of home recovery? I am curious to know if she will be able to stay by herself? Will she be in pain? Will she be depressed? Is she allowed to leave the house? Will her grandkids be allowed to visit with her once she is home? Should I plan on taking a leave from work to care for her? Should I find a temporary home for her cat or can she be around animals? What types of obstacles can I expect?
I am more nervous about the recovery than I am about the treatment.
Thanks so much!
Michelle
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Re: Recovery after Stem Cell Transplant
I don't know enough to give you any kind of answer but I am sure a more knowledgeable person will need to know the drugs that your mother will be getting. Best wishes!
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chinook9 - Name: Brian
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 8/2008 SMM 6/2011
- Age at diagnosis: 65
Re: Recovery after Stem Cell Transplant
Our doctors advised that someone stay with my husband for 30 days following his transplant. I did leave him for short periods -- to run errands, etc., but for the most part I was there. He wasn't depressed or in pain, but was fairly sick to his stomach. He wasn't up to preparing meals for himself, and in fact the transplant coordinator said he wasn't supposed to prepare food and everything had to be kept very sterile. He also had to go to the cancer center every day until about day 20 or so to get bloodwork done. I needed to be there to drive him.
Adult visitors who are well are okay. They need to wash their hands. We were advised to avoid contact with children for 30 days.
Everyone is different. Check with your mother's transplant coordinator.
Adult visitors who are well are okay. They need to wash their hands. We were advised to avoid contact with children for 30 days.
Everyone is different. Check with your mother's transplant coordinator.
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Mary Theobald
Re: Recovery after Stem Cell Transplant
I assume that your mom is going to have an autologous stem cell transplant. That is what I had in mid-August on an outpatient basis.. It is typically preceeded by a high power lose your hair lose your appetite chemo. I dropped 40 lbs and with the hair loss I did have the "cancer patient" look. On the other hand, I was always able to take care of myself. I did feel real lousy the first couple of weeks and then it slowly eased. There seems to be a wide variety of responses. One individual who was going through it at the same time I was looked fine the whole time and never lost his appetite. On the other hand, another patient I knew had a very tough time with nausea. The good news is that there are drugs to help with most of the side effects. Nothing is going to make it a cake walk but it should not be a terrible experience either. The biggest thing I have had to learn is patience. I wanted to feel better quicker and it does take time. One other note to pass on based on my experience- if they use the drug melphalen (which is pretty common) continually suck on ice cubes the day it is administered. I did not get any of the mouth sores that other people did who did not keep up the ice.
There was no pain associated with the transplant process.
Re. pets and kids. Obviously check with your doctor. Everything is typically dictated by your blood counts. When the white blood cell count is low you cannot be around pets and you have to keep all visitors to a minimum.
Good luck to your mom and I hope all goes well.
There was no pain associated with the transplant process.
Re. pets and kids. Obviously check with your doctor. Everything is typically dictated by your blood counts. When the white blood cell count is low you cannot be around pets and you have to keep all visitors to a minimum.
Good luck to your mom and I hope all goes well.
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
Re: Recovery after Stem Cell Transplant
While i was in the transplant unit after ASCT May of 2010, my side effects were skin rash, hives, swelling in feet and legs, diarrhea, constipation, a few sores in mouth, sore throat, blurred vision and very tired. All of these were over in a matter of 5 days. When i went to an apartment for 3 weeks by the Hospital with my sister, i never ran a temperature, just a little nausea until put on medication. My sister would leave to go get us something to eat and come right back. She was bored there, not me. We even went out to eat at night when the restaurants were slow with my doctors permission. When i came home i was able to take care of myself, shop early in the mornings and drive to appointments. My brother took care of my dog for the first three months after my transplant. I sure missed him. I still have to keep away from large crowds, kids, anyone sick. I haven't worked since i was diagnosed in September 2009. I will be having a bone marrow biopsy this coming Tuesday which i hope will go well. I am on Revlimid 15 mg. which makes me tired. The CD Fund pays my copay for Revlimid and LLS pays my health insurance premium. I will be on Medicare March of 2012, which will be a new journey for me. Anyway three weeks in the apartment after transplant was not bad for me at all. It has been 18 months since my transplant and i am doing good and in partial remission. Next May i will go to UMC Cancer Center in Tucson, AZ for my 2 year evaluation. My advice for your mother is to think positive and good luck to her.
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texas-tea13 - Name: Steve
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 09/19/2009
- Age at diagnosis: 59
Re: Recovery after Stem Cell Transplant
I'm sorry you and your mom are going through this. But it's good that she has you to help!
You ask questions for which there are no real answers. Everyone's experience with SCT is different, which makes it frustratingly hard to plan for! Her blood counts will determine when she goes home and when it's safe for her to be around kids or in crowds. EJs doc did not mind that we had a cat (although I think different docs have differing opinions on this), and he was able to go back to work within 8 weeks.
Universally it seems that the biggest challenge post SCT is fatigue, followed closely by a change in appetite. How severe or how long each of these lasts is again...different for everyone. EJ was required to walk 20 laps around the floor every day he was in the hospital, which I think did a lot to counter the fatigue. Although he didn't have too much trouble with nausea, he did live on cheerios and smoothies for a while.
For your own planning purposes my suggestion would be to try and stay as flexible as possible going into the SCT. I think pretty quickly you will have an idea of how well your mom is handling it and what type of support she will need post SCT. Know that there will be a pothole or two along the way, but with the help of the transplant staff your mom will get thru it. And if your mom is going to need extra help when she gets home, there will be time to arrange it before she leaves the hospital.
Good Luck!
Lyn
You ask questions for which there are no real answers. Everyone's experience with SCT is different, which makes it frustratingly hard to plan for! Her blood counts will determine when she goes home and when it's safe for her to be around kids or in crowds. EJs doc did not mind that we had a cat (although I think different docs have differing opinions on this), and he was able to go back to work within 8 weeks.
Universally it seems that the biggest challenge post SCT is fatigue, followed closely by a change in appetite. How severe or how long each of these lasts is again...different for everyone. EJ was required to walk 20 laps around the floor every day he was in the hospital, which I think did a lot to counter the fatigue. Although he didn't have too much trouble with nausea, he did live on cheerios and smoothies for a while.
For your own planning purposes my suggestion would be to try and stay as flexible as possible going into the SCT. I think pretty quickly you will have an idea of how well your mom is handling it and what type of support she will need post SCT. Know that there will be a pothole or two along the way, but with the help of the transplant staff your mom will get thru it. And if your mom is going to need extra help when she gets home, there will be time to arrange it before she leaves the hospital.
Good Luck!
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: Recovery after Stem Cell Transplant
Dear "Nervous,"
I think it is great that you are thiking about these things this far in advance. It means your Mom is in great hands! There is no question your Mom will feel washed out for awhile after the transplant. As such, at least for the first week or so, I would make sure that someone is with her at all times. If she does great, she may not need to be under such constant watch but should still have someone readily available to assist her. The persistence of gastrointestinal symptoms after transplant is quite variable, though. I agree with the other posts that the appetite and the ability to taste things normally again will recover more slowly, but nausea (with or without vomiting), diarrhea, mouth soreness should recover more quickly and hopefully be a less significant issue by the time of discharge from the hospital.
Your Mom will not need to live in a bubble after discharge from the hospital. She will be able to leave the house with appropriate precautions. She should not be in pain from the transplant itself. Depression could occur but more often than not does not.. As far as who can visit, etc, different transplanters have different philosphies on this point. I would touch base with the transplant physician and coordinator to get a better sense as to their policies on precautionary measures (grandchildren visits, etc). They should also be able to provide some guidance as to whether or not you should take a temporary leave from work to help her out.
I hope chemotherapy (sounds like she is getting Revlimid, Velcade, and dexamethasone) and transplant go smoohtly. It is a highly effective strategy for management of myeloma so she should do well!
Take care!
Pete V.
I think it is great that you are thiking about these things this far in advance. It means your Mom is in great hands! There is no question your Mom will feel washed out for awhile after the transplant. As such, at least for the first week or so, I would make sure that someone is with her at all times. If she does great, she may not need to be under such constant watch but should still have someone readily available to assist her. The persistence of gastrointestinal symptoms after transplant is quite variable, though. I agree with the other posts that the appetite and the ability to taste things normally again will recover more slowly, but nausea (with or without vomiting), diarrhea, mouth soreness should recover more quickly and hopefully be a less significant issue by the time of discharge from the hospital.
Your Mom will not need to live in a bubble after discharge from the hospital. She will be able to leave the house with appropriate precautions. She should not be in pain from the transplant itself. Depression could occur but more often than not does not.. As far as who can visit, etc, different transplanters have different philosphies on this point. I would touch base with the transplant physician and coordinator to get a better sense as to their policies on precautionary measures (grandchildren visits, etc). They should also be able to provide some guidance as to whether or not you should take a temporary leave from work to help her out.
I hope chemotherapy (sounds like she is getting Revlimid, Velcade, and dexamethasone) and transplant go smoohtly. It is a highly effective strategy for management of myeloma so she should do well!
Take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Recovery after Stem Cell Transplant
Hi Nervous,
My husband had his ASCT Oct 7th and could not be left alone. We traveled out of town so we were living in a townhouse close to the hospital during this time. We made daily trips to the clinic for blood work and treatments. I stayed with him around the clock for 4 weeks. The transplant went well but the Melphalan made him very sick. This lasted for 1 1/2 weeks. Then he had Mucosis which caused mouth sores and gastrointestinal sores and pain. He couldn't eat or sleep well for the pain. (and he sucked on the ice chips the whole time). He ran a fever and was hospitalized for anitibotics a night. He also recieved platelets and blood for a week after the transplant. As far as crowds, we were advised to stay away until he was out of the neutropenic stage and his WBC had recovered. It finally did last week and he returned to work on Monday morning for 1/2 days.
I'm not trying to scare you. Everyone's different. Your mom may do great. But she will need you for a little because the fatique is bad. She is lucky to have you as a caregiver! Just be patient with her if it takes a little longer for recovery, and make sure you get your rest also!
Good Luck to you both,
Karen
My husband had his ASCT Oct 7th and could not be left alone. We traveled out of town so we were living in a townhouse close to the hospital during this time. We made daily trips to the clinic for blood work and treatments. I stayed with him around the clock for 4 weeks. The transplant went well but the Melphalan made him very sick. This lasted for 1 1/2 weeks. Then he had Mucosis which caused mouth sores and gastrointestinal sores and pain. He couldn't eat or sleep well for the pain. (and he sucked on the ice chips the whole time). He ran a fever and was hospitalized for anitibotics a night. He also recieved platelets and blood for a week after the transplant. As far as crowds, we were advised to stay away until he was out of the neutropenic stage and his WBC had recovered. It finally did last week and he returned to work on Monday morning for 1/2 days.
I'm not trying to scare you. Everyone's different. Your mom may do great. But she will need you for a little because the fatique is bad. She is lucky to have you as a caregiver! Just be patient with her if it takes a little longer for recovery, and make sure you get your rest also!
Good Luck to you both,
Karen
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ka1222 - Name: Karen
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 04/13/11
- Age at diagnosis: 49
Re: Recovery after Stem Cell Transplant
Dear nervous. I had an ASCT June 3rd of this year. My main side effects were mild nauseaaand loss of apetite which I attributed to the high dose Melphalan. Both of these effects lasted for about two weeks. I was in the hospital for 10 days following my transplant.
Like many others have noted I had fatigue at first. I couldn't walk half a block to the neighborhood pool when I was first released. Within a month I was walking 3 to 4 miles every morning and returned to work full time two months after being released from the hospital. I sit at a desk so the physical demands of my job are minimal.
I was told to avoid crowds, wash my hands frequently, avoid mowing the lawn or doing any sort of gardening or yard work. I was also on an anti bacterial for three months and still take acyclovir.
My weight dropped 15 pounds in the two weeks after getting out of the hospital but much of that was excess weight I had picked up from the dex I received during the intial treatment phase.
Other than a major loss of aerobic conditioning I feel nearly normal
I think it depends a lot of your mother's age and physical condition prior to her diagnosis as well as how well she has been able to tolerate her initial therapy.
I wish you both all of the best and wish your mother a long asymptomatic remission..
Mike
Like many others have noted I had fatigue at first. I couldn't walk half a block to the neighborhood pool when I was first released. Within a month I was walking 3 to 4 miles every morning and returned to work full time two months after being released from the hospital. I sit at a desk so the physical demands of my job are minimal.
I was told to avoid crowds, wash my hands frequently, avoid mowing the lawn or doing any sort of gardening or yard work. I was also on an anti bacterial for three months and still take acyclovir.
My weight dropped 15 pounds in the two weeks after getting out of the hospital but much of that was excess weight I had picked up from the dex I received during the intial treatment phase.
Other than a major loss of aerobic conditioning I feel nearly normal
I think it depends a lot of your mother's age and physical condition prior to her diagnosis as well as how well she has been able to tolerate her initial therapy.
I wish you both all of the best and wish your mother a long asymptomatic remission..
Mike
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indymike
9 posts
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