Life Time Chemo Treatment?????????????

Hello,

I am posting as a "New Member". I just finished treatment for cancer of the Tonsill's. Tongue.

My subject heading has to do with my Cousin's cancer. I am not fully aware of his illness. Mainly due to, "I've had my own" cancer to deal with. I do know he suffers with Lymphoma. I do know he has been treated with chemo. I believe for 5 months. I just spoke to him today about his treatment. How its going, and all that. He was frustraited. He said he stopped treatments. His Oncologist told him he would be on Chemo for life. He says he can't do chemo anymore. He felt as if he is dying. That the chemo was killing him. He is going to try alternative treatments.

Now that I have time, I am going to pursue helping him any way I can. I start here with this Forum. I am hoping there may be someone out there in Forum Land who has been down this road. I hope one of you can help me help him through education. If so, I would so greatly appreciate the help.

Best regards to all of you,

GS117

Comments

  • po18guy
    po18guy Member Posts: 1,461 Member
    edited November 2020 #2
    Very sorry to hear this

    Which lymphoma (there are about 70 different types), where is he and how old? That makes all the difference. At first blush, it sounds like he needs a new hematologist. If he is in the states, I strongly urge him to consult at a National Cancer Institute designated comprehensive cancer center.  https://www.cancer.gov/research/infrastructure/cancer-centers/find

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited November 2020 #3
    po18guy said:

    Very sorry to hear this

    Which lymphoma (there are about 70 different types), where is he and how old? That makes all the difference. At first blush, it sounds like he needs a new hematologist. If he is in the states, I strongly urge him to consult at a National Cancer Institute designated comprehensive cancer center.  https://www.cancer.gov/research/infrastructure/cancer-centers/find

    Cousin

    GS,

    Few cancers require lifetime chemo application. As Po noted, you need a lot more detail regarding your cousins situation.   Among Lymphomas, the indolent ones occasionally require what is know as 'maintenance,' which in theory could string on for years.   Prostate Cancer in men with metastasis also have to receive drugs for life, but this is always some form of hormonal therapy -- not technically 'chemo,' just as Rituxan is a monoclonal antibody, and also is not technically a chemo.

    Also, a person who is refractory, or not getting better with chemo, might be told that they will need application until they pass.    This is all speculation.....

     

  • Evarista
    Evarista Member Posts: 336 Member
    edited November 2020 #4
    "Chemo" vs. "Maintenance chemo"

    It sounds as though your cousin's physician may have used unfortunately casual language in speaking to him. I have not been on "maintenance chemo" but have been on the kind of aggressive chemo that feels like it's killing me and understand his sentiment at the prospect of facing that forever. BUT-BUT-BUT: My impression from people here is that mainentence chemo is not like that.  The most frequent example that I see posted is Rituxan (rituximab) infusions, given maybe once a month or once every two/three/four months.  There are other kinds of maintenance chemo and hopefully people will share their experiences with you shortly.

    In the meantime, please encourage your cousin to get clarification on exactly what kind of maintenance regime he would be looking at.  It might be very benign and it would be a terrible shame were he to stop treatment due to what may have been an unfortunate miscommunication.

    Thank you so much for helping him through this. Stay well.