Mediastinal Large B Cell Lymphoma

KMN
KMN Member Posts: 6
in Lymphoma (Hodgkin and Non-Hodgkin) #1
My nephew was diagnosed Stage IV Primary Mediastinal Large Bcell Lymphoma at the beginning of April, 2011. He's was in pretty bad shape and was started on a chemo that was supposed to be given once every 21 days - I think it might be the R CHOP or Epoch that's been discussed. I've read where it can be given in 14 days if the person is in fairly good shape (instead of the 21 days). My question is: is it possible to get this chemo in less than 14 days? Or is that very dangerous? Unfortunately, he was given a 2nd round of this chemo by day five. The next day he had 5 gran mal siezures, devoloped sepsis, had to have fluid drained from his right lung, and put into a medically induced coma. A few days later they tried to bring him out of the induced coma but he didn't come out of within the first two days and they determined his brain stem was damaged and his brain was dead. They had to turn off life support (He was on a ventillator for about 1 1/2 wks)on April 9, 2011. What I don't understand is why did they give him that 2nd round of a 21 day chemo when he wasn't in fair condition (on a ventilator and kidneys were in partial failure) Can anyone help answer my questions. My sister (his mom) is soooo devastated as is the rest of the family. Thanks, Jack

Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
    So very sorry!
    Hi Jack,
    First off, my deepest condolences for your loss. Breaks my heart to read something like this. I had the same chemo as John. As he said, it takes a period of rest time between treatments to tolerate each round. In our case we received our treatments once every 21 days. I find it difficult to understand why your nephew received his second round of chemo 5 days apart. That sounds so soon, and haven't heard of anyone getting it that soon. But... without knowing the specifics of what his treatment dose consisted of, I wouldn't want to speculate as to why his doctors did it that way. I hope someone else in the group has heard of this time period for treatments and will be able to shed some light for you. Once again...I'm so very sorry for your loss. God bless you and your family.
    Sincerely, Sue (FNHL-2-3A-6/10)
  • KMN
    KMN Member Posts: 6
    #3
    allmost60 said:

    So very sorry!
    Hi Jack,
    First off, my deepest condolences for your loss. Breaks my heart to read something like this. I had the same chemo as John. As he said, it takes a period of rest time between treatments to tolerate each round. In our case we received our treatments once every 21 days. I find it difficult to understand why your nephew received his second round of chemo 5 days apart. That sounds so soon, and haven't heard of anyone getting it that soon. But... without knowing the specifics of what his treatment dose consisted of, I wouldn't want to speculate as to why his doctors did it that way. I hope someone else in the group has heard of this time period for treatments and will be able to shed some light for you. Once again...I'm so very sorry for your loss. God bless you and your family.
    Sincerely, Sue (FNHL-2-3A-6/10)

    Thanks
    Thank you both to John and Sue for your responses and condolences. I wasn't there for this decision to give my nephew this 2nd dose so soon. My sister and her son lived out of state but I was shocked when doctors gave him the 2nd dose so soon. My sister said that the tumor was starting to breakdown from the first dose and doctors wanted to get him off the ventilator. But everything I've read, is that there needs to be a rest period to let the chemo work and the body to adjust/heal. I guess you question a lot when something like this happens, but if he was starting to respond to the first round and was in such a weakened state, why the second round so soon. Thanks! Jack
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #4
    KMN said:

    Thanks
    Thank you both to John and Sue for your responses and condolences. I wasn't there for this decision to give my nephew this 2nd dose so soon. My sister and her son lived out of state but I was shocked when doctors gave him the 2nd dose so soon. My sister said that the tumor was starting to breakdown from the first dose and doctors wanted to get him off the ventilator. But everything I've read, is that there needs to be a rest period to let the chemo work and the body to adjust/heal. I guess you question a lot when something like this happens, but if he was starting to respond to the first round and was in such a weakened state, why the second round so soon. Thanks! Jack

    Jack I'm so sorry for you
    Jack I'm so sorry for you and your family, I had cancer twice, and I did receive chemo, 5 days in a row, followed by a week off. I was in the hospital when I was receiving my treatment. That went on for nine weeks. Vinny
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    CHEMO
    Jack,
    First of all welcome to the place you never thought you'd be. Now...Chemo is the next thing. I never like to speak for anyone,but in this case I think I can. Just about everyone here has been thru one type of chemo or the other and each one of them and I can tell you it is a very rough ride. I got my treatments every 5 weeks. It took my body at least that long to recover from the last treatment. Even then I was not that sure it was recovered fully. I went thru 6 treatments of r-cvp and by the 4th treatment I had no energy at all. I was completely exhausted. There were times I felt I wasn't sure I was going to make it to #6. I did but it was tough. Getting treatments of r-chop every two weeks sounds a little dangerous to me.The body has to have a little time to build back up. If I am wrong I am sure the others will correct me and it will be welcomed. You will get other responses from the other members on here. They are a great bunch of people and are here to help. Hope this helps some John
  • KMN
    KMN Member Posts: 6
    #6
    allmost60 said:

    So very sorry!
    Hi Jack,
    First off, my deepest condolences for your loss. Breaks my heart to read something like this. I had the same chemo as John. As he said, it takes a period of rest time between treatments to tolerate each round. In our case we received our treatments once every 21 days. I find it difficult to understand why your nephew received his second round of chemo 5 days apart. That sounds so soon, and haven't heard of anyone getting it that soon. But... without knowing the specifics of what his treatment dose consisted of, I wouldn't want to speculate as to why his doctors did it that way. I hope someone else in the group has heard of this time period for treatments and will be able to shed some light for you. Once again...I'm so very sorry for your loss. God bless you and your family.
    Sincerely, Sue (FNHL-2-3A-6/10)

    Chemo for Mediastinal Large B cell Lymphoma
    Hi Sue: I don't understand why this chemo was given so soon. When my nephew (who was 34 yr old) got the first dose of chemo, my sister was told it was a chemo that is given only once in 21 days. Then when she called and said he got a second dose 5 days later I couldn't understand why. He was not in good condition when he got the first round - my nephew unfortunately waited too long before he went to the doctor - he was un-employed and no insurance. By the time he saw a doctor, he was having trouble breathing and swallowing, fluid had accummulated in his heart(they drained that), and he was down to about 120 pounds (he was 6 ft 2 in). So maybe the doctors felt it was his last chance - but it doesn't make sense to me. My sister did say, for not having insurance, the hospital treated him and the family very well. I thank you for your condolences. Jack
  • miss maggie
    miss maggie Member Posts: 929
    #7
    KMN said:

    Chemo for Mediastinal Large B cell Lymphoma
    Hi Sue: I don't understand why this chemo was given so soon. When my nephew (who was 34 yr old) got the first dose of chemo, my sister was told it was a chemo that is given only once in 21 days. Then when she called and said he got a second dose 5 days later I couldn't understand why. He was not in good condition when he got the first round - my nephew unfortunately waited too long before he went to the doctor - he was un-employed and no insurance. By the time he saw a doctor, he was having trouble breathing and swallowing, fluid had accummulated in his heart(they drained that), and he was down to about 120 pounds (he was 6 ft 2 in). So maybe the doctors felt it was his last chance - but it doesn't make sense to me. My sister did say, for not having insurance, the hospital treated him and the family very well. I thank you for your condolences. Jack

    Chemo
    Dear Jack,

    I am so very sorry for the outcome for your nephew. I am sorry also for
    all the pain you and your family has endured. 34 is too young.

    It is a lesson for all the uninsured. If there is something wrong, and you
    don't feel quite right, go to a good hospital, see a social worker, you will
    get help. I know of such a case, my friends daughter has not been feeling well.
    She applied for medicaid, but never followed thru with the paperwork. I am not
    sure, but I think the social worker at the hospital will apply for medicaid in
    the patient' behalf.

    Jack, I realize your nephew waited too long. I would still check more throughly
    with their treatment for you nephew. I know it's too soon, but.

    My condolences to you and family. Love Maggie
  • KMN
    KMN Member Posts: 6
    #8
    miss maggie said:

    Chemo
    Dear Jack,

    I am so very sorry for the outcome for your nephew. I am sorry also for
    all the pain you and your family has endured. 34 is too young.

    It is a lesson for all the uninsured. If there is something wrong, and you
    don't feel quite right, go to a good hospital, see a social worker, you will
    get help. I know of such a case, my friends daughter has not been feeling well.
    She applied for medicaid, but never followed thru with the paperwork. I am not
    sure, but I think the social worker at the hospital will apply for medicaid in
    the patient' behalf.

    Jack, I realize your nephew waited too long. I would still check more throughly
    with their treatment for you nephew. I know it's too soon, but.

    My condolences to you and family. Love Maggie

    Thanks Maggie
    Thank you Maggie for you condolences. Unfortunately, my nephew was unemployed and was looking for a job but not feeling well. My sister did say the hospital did provide the best care. I hope your friend's daughter is doing ok. Jack
  • skuttlebug
    skuttlebug Member Posts: 45
    #9
    KMN said:

    Thanks Maggie
    Thank you Maggie for you condolences. Unfortunately, my nephew was unemployed and was looking for a job but not feeling well. My sister did say the hospital did provide the best care. I hope your friend's daughter is doing ok. Jack

    rchop
    i had rchop it was givin every 3 weeks i had rutuxin one day and the chop the next day blessings to your nephew and your family. denise

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