aulologour stem cell transplant for NHL

litespeed
litespeed Member Posts: 2
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
in remission for diffuse large B cell lymphoma. PET, CT, bone marrow, clinical exam normal. Just finished intrathecal methotrexate in spinal cord- 6 injections. Trying to decide if I should proceed with stem cell transplant prior to any recurrence. Also interested in side effects from stem cell transplant and recuperation.

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  • blueroses
    blueroses Member Posts: 524
    #2
    bone marrow transplant for nhl
    Hello,

    I have been going back and forth with whether or not to comment as my bone marrow transplant was done way back in 1991 and by now I am sure they have altered the treatments and perhaps their side effects, don't know. Also I was apparently one of the first who received stem cells but as I remember it was part stem cell, the bone marrow tranplant I mean. I had non hodgkins lymphoma but would have to look up the exact kind. Everyone is also different in how they react to any cancer treatments and the exact mix of drugs used so don't think that even if I had the exact same type of nhl that you do and received the exact same treatment, the outcome could be quite different. For me I had a rough time with the transplant (had to spend 2 months in isolation in hospital back then) and had congestive heart failure during transplant. I also had a couple of pneumonias during isolation as well. I developed heart trouble, they think from one of the chemo drugs - probably adriamycin, and so I was left with heart arythmias that left me with near fainting spells now and again. 3 years ago I had to have a pacemaker put in to help control the arythmias. That improved things like my circulation but on top of the pacemaker I know take 4 heart meds as well to help control worsening palpitations. I am still on disability since the transplant not only because of the spontanaeity of the arythmias but also because of a chronic fatigue situation which came about after transplant, I nap at least once a day sometimest 3 times. I have some respiratory issues from the pneumonias I had during transplant (scar tissue at the base of one lung) and some chronic bronchitis. I had total body radiation and have developed early arthritis because of it they think. I have what they think is nerve neuropathy (nerve damage) from treatment as well. However, I am a 20 year survivor of NHL and I know in my heart that without the transplant I wouldn't be here, got to see my kids grow up where I probably would not have without the stem cell transplant. Like I said, everyone is different, but these were my experiences. All the best of luck with yours if you decide to go for it and remember each cancer is different as each person is different. God Bless.
  • Debb412
    Debb412 Member Posts: 1
    #3
    blueroses said:

    bone marrow transplant for nhl
    Hello,

    I have been going back and forth with whether or not to comment as my bone marrow transplant was done way back in 1991 and by now I am sure they have altered the treatments and perhaps their side effects, don't know. Also I was apparently one of the first who received stem cells but as I remember it was part stem cell, the bone marrow tranplant I mean. I had non hodgkins lymphoma but would have to look up the exact kind. Everyone is also different in how they react to any cancer treatments and the exact mix of drugs used so don't think that even if I had the exact same type of nhl that you do and received the exact same treatment, the outcome could be quite different. For me I had a rough time with the transplant (had to spend 2 months in isolation in hospital back then) and had congestive heart failure during transplant. I also had a couple of pneumonias during isolation as well. I developed heart trouble, they think from one of the chemo drugs - probably adriamycin, and so I was left with heart arythmias that left me with near fainting spells now and again. 3 years ago I had to have a pacemaker put in to help control the arythmias. That improved things like my circulation but on top of the pacemaker I know take 4 heart meds as well to help control worsening palpitations. I am still on disability since the transplant not only because of the spontanaeity of the arythmias but also because of a chronic fatigue situation which came about after transplant, I nap at least once a day sometimest 3 times. I have some respiratory issues from the pneumonias I had during transplant (scar tissue at the base of one lung) and some chronic bronchitis. I had total body radiation and have developed early arthritis because of it they think. I have what they think is nerve neuropathy (nerve damage) from treatment as well. However, I am a 20 year survivor of NHL and I know in my heart that without the transplant I wouldn't be here, got to see my kids grow up where I probably would not have without the stem cell transplant. Like I said, everyone is different, but these were my experiences. All the best of luck with yours if you decide to go for it and remember each cancer is different as each person is different. God Bless.

    i HAD 2 STEM CELL TRANSPLANTS IN LESSTHAN A YEAR
    hI MY NAME IS DEBORAH, i READ YOUR LETTER, AND HAVE QUESTION FOR YOU ABOUT YOUR FATIGUE? i AM EXTREMELY FATIGUED ALL THE TIME, AND AM VERY EPRESSED, SO DONT KNAO WEATHER ITS CAUSED BY THE TREATMENT OR THE DEPRESSION. cOUYLD YOU TELL ME HOW YOU FEEL ENERGY WISE tHANKS DEBB
  • blueroses
    blueroses Member Posts: 524
    #4
    Debb412 said:

    i HAD 2 STEM CELL TRANSPLANTS IN LESSTHAN A YEAR
    hI MY NAME IS DEBORAH, i READ YOUR LETTER, AND HAVE QUESTION FOR YOU ABOUT YOUR FATIGUE? i AM EXTREMELY FATIGUED ALL THE TIME, AND AM VERY EPRESSED, SO DONT KNAO WEATHER ITS CAUSED BY THE TREATMENT OR THE DEPRESSION. cOUYLD YOU TELL ME HOW YOU FEEL ENERGY WISE tHANKS DEBB

    Wow, 2 in a year
    I am no doctor but all that treatment has got to add to your fatigue if not cause it completely but depression makes one tired as well, or can, so it's probably a combination of medical issues that is causing your lack of energy I would think. Best thing is to speak to your oncololgist because every cancer, as every person, is different. Personally I have almost zero energy most days and just get through doing the normal visits to the doctors offices which sometimes can be a real grind with how I feel. I have heard good things about accupuncture for chronic fatigue but that can be quite expensive. People who are fresh out of treatment or are in treatment seem to always be very tired. Let's face it the system is going through alot during those times and needs lots of time to rest so it makes sense. I have started to use my energy, that I have as wisely as I can, so I do my groceries over the internet now and have a drug store that delivers so I save my energy for the doctors visits and maybe once and awhile out for lunch or to do a quick shopping. Take care of yourself and try to be positive, it helps.
  • mhalste1
    mhalste1 Member Posts: 2
    #5
    Stem Cell Survivor
    I did not know that stem cell transplants were used prior to recurrence but I had an autologous stem cell transplant 5 years ago. I had hodgkins lymphoma and relapsed three months after having chemotheraphy. I have been cancer free since my transplant but I had a very difficult time with the transplant. I was very sick in the hospital for about 12 days and was very sick at home afterwards for about two months. I was in a lot of pain and was so weak I slept most of the time. Even talking on the phone was too much for me. I could not keep food down, had diarrhea, bone pain, my skin hurt and I had sores in my mouth. I had three blood and platelet transfusions after the transplant and had to get IV potassium until my blood levels came back to normal. I was able to go back to work after 4 months and after about a year I felt almost normal. I am doing great now and have even run 2 half marathons. A stem cell transplant is not something I would do unless I HAD to. I was told it was my only option if I wanted to survive for more than couple of years. I have been completely cancer free since. I am glad I had the transplant but it was extremely difficult.
  • mhalste1
    mhalste1 Member Posts: 2
    #6
    Debb412 said:

    i HAD 2 STEM CELL TRANSPLANTS IN LESSTHAN A YEAR
    hI MY NAME IS DEBORAH, i READ YOUR LETTER, AND HAVE QUESTION FOR YOU ABOUT YOUR FATIGUE? i AM EXTREMELY FATIGUED ALL THE TIME, AND AM VERY EPRESSED, SO DONT KNAO WEATHER ITS CAUSED BY THE TREATMENT OR THE DEPRESSION. cOUYLD YOU TELL ME HOW YOU FEEL ENERGY WISE tHANKS DEBB

    Fatigue
    Debb,

    I had a stem cell transplant 5 years ago and remember how exhausted I was at the time. I was not depressed, just really wiped out.I believe my fatigue was caused by the treatment. As I regained my strength my spirits lifted. Giving my self little goals each day also helped. Even if it was just things like going outside and sitting in the sun for a few minutes or walking out to the mail box. Eventually I worked up the strenth to drive down the street to the mini mart for a soda. I did not feel close to normal for about a year but was able to resume most of my normal routines after about 4 months. You can do it Debb!

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