does anybody know what to when chemo stops working?

ashesdad
ashesdad Member Posts: 4
Hello everybody and congrats on your remission, my question is what to do when the chemo stops working? My 23 year old daughter has large b cell lymphoma in the mediastinal and it is very agressive, they gave her 12 rounds of chemo and she had a mass about the size of a bb. They decided to wait 3 weeks and do a pet scan and found that the remaining bb sized mass had grown back to the size of a golfball. They decide then to start an agressive chemo regiment of 3 heavy does of chemo for 3 days every 3 weeks after her next pet scan they said it had grown instead of shrinking and now they want to do 6 weeks of radiation 5 days each week. has anybody heard of this or been in the same boat, any info at all is appreciated. Thank you, ashesdad.

Comments

  • vinny59
    vinny59 Member Posts: 1,036 Member
    chemo
    Sorry to hear that the chemo is not doing it's job, I had one mass left in my pelvic bone and my Onc. did tell me if it did not go away, they would start radiation. For me the chemo got the last of it. In reading other post's radiation I believe would be the next step...... praying all goes well for your daughter.... Vinny
  • ashesdad
    ashesdad Member Posts: 4
    vinny59 said:

    chemo
    Sorry to hear that the chemo is not doing it's job, I had one mass left in my pelvic bone and my Onc. did tell me if it did not go away, they would start radiation. For me the chemo got the last of it. In reading other post's radiation I believe would be the next step...... praying all goes well for your daughter.... Vinny

    thanks
    Hey Vinny I am really happy for you and thanks for the prayers. We are also getting pretty excited about a clinical trial with new drugs and are still very optimistic for a full recovery, it just scares the heck out of everybody involved with such a terrible disease, but with gods help and a positive attitude I believe all will be well, Joe.
  • bk1950
    bk1950 Member Posts: 43
    ashesdad said:

    thanks
    Hey Vinny I am really happy for you and thanks for the prayers. We are also getting pretty excited about a clinical trial with new drugs and are still very optimistic for a full recovery, it just scares the heck out of everybody involved with such a terrible disease, but with gods help and a positive attitude I believe all will be well, Joe.

    chemo
    dear joe, i've heard that chemo is not right for everyone and there are other alternitives so please keep the faith. i will pray for her recovery and god bless your family.
  • ashesdad
    ashesdad Member Posts: 4
    bk1950 said:

    chemo
    dear joe, i've heard that chemo is not right for everyone and there are other alternitives so please keep the faith. i will pray for her recovery and god bless your family.

    bless you
    bk bless you for your kind words and we will definetly keep the faith, it's the only thing you can give up but can't be taken.
  • tcvine
    tcvine Member Posts: 174
    Sorry about your daughter
    Hi Joe,

    Very sorry to hear about your daughter. But I really believe it's very important to maintain that good attitude.
    I was diagnosed with aggressive, diffuse, large, B-Cell lymphoma, stage 4, back in July. They only put me on 6 rounds of chemo, once every 3 weeks. I turned 60 during my chemo, but my last one was the day before Thanksgiving. I won't know for sure until late December, but I'm actually expecting a full remission. My interim testing after 2 rounds of chemo was good, so I don't expect to need any of the radiation.

    It would be interesting to know what chemo regimen your daughter was on at first. Mine was R-CHOP, which I think is fairly strong. I cannot imagine doing 12 rounds of that. From what I've read here in the blog, the radiation thing is pretty effective, especially for specific sites. Please keep checking in with us whenever you can. Everyone here feels what you feel.

    All my best wishes to you, your daughter and family.
    God Bless,
    Tom (DLBCL-4-7/10)
  • DenJ
    DenJ Member Posts: 26
    Treatment
    Hi ashesdad.....Den here. Ok...I have been through the whole thing of NHL...been a year and I'm in remission. I really delved into things about that disease. I found that there are clinical trials that can be helpful. I recommend getting in touch with the Leukemia Lymphoma Society.....they really have alot of info and help. If you'd like I could send some info. Best of luck to you and your daughter.....I know it's rough,

    Den