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peripheral T-cell lymphoma

dlocwood
dlocwood Member Posts: 2
i would like to talk to anybody who has peripheral t-cell lymphoma

Comments

  • natalie14
    natalie14 Member Posts: 36
    Tcell Lymphoma
    I was just told I have a recurrence of Cutaneous Peripharel T-Cell Lymphoma. It is rare to find people whose have TCell Lymphoma. Would love to chat. Natalie
  • skanzenbach
    skanzenbach Member Posts: 2
    natalie14 said:

    Tcell Lymphoma
    I was just told I have a recurrence of Cutaneous Peripharel T-Cell Lymphoma. It is rare to find people whose have TCell Lymphoma. Would love to chat. Natalie

    Cutaneous T-Cell Lymphoma
    Hi,

    I was diagnosed with Cutaneous T-Cell Lymphoma the end of 2008. I've been on treatment since but don't seem to be getting anywhere.

    What kind of treatment are you on? Is it working?
  • natalie14
    natalie14 Member Posts: 36

    Cutaneous T-Cell Lymphoma
    Hi,

    I was diagnosed with Cutaneous T-Cell Lymphoma the end of 2008. I've been on treatment since but don't seem to be getting anywhere.

    What kind of treatment are you on? Is it working?

    Cutaneous T-Cell Lymphoma
    Hello,
    I was diagnosed August of 2008. I took CHOP chemo and responded right away with remission. I was in remission for just over one year and last month I was told I have a recurrence. Now I will be starting ICE chemo, then an autologous stem cell transplant followed by total body radiation and more high dose chemotherapy. What are your doctors telling you?? Thanks for sharing, Natalie
  • skanzenbach
    skanzenbach Member Posts: 2
    natalie14 said:

    Cutaneous T-Cell Lymphoma
    Hello,
    I was diagnosed August of 2008. I took CHOP chemo and responded right away with remission. I was in remission for just over one year and last month I was told I have a recurrence. Now I will be starting ICE chemo, then an autologous stem cell transplant followed by total body radiation and more high dose chemotherapy. What are your doctors telling you?? Thanks for sharing, Natalie

    Cutaneous T-Cell
    Information has been choppy and I feel like we're pretty much doing the "trial and error" thing. I was on PEGASYS Interferon injections weekly and Targretin daily. Insurance decided the injection chemo I was using was too expensive. So, I started an Alpha Interferon injection 3 times a week. That finally got toxic in my system and after 9 months of appeals and irritating anyone I could find :) They approved the PEGASYS again. Well, now my body says no. So I'm supposed to start Vorinistat. It's supposed to be delivered tonight. My white and red blood counts have progressively reduced and we did try Neupogen injections but they didn't help. I've got another PET Scan scheduled for Thursday so I'm anxious to see results from that. I haven't felt good in 2 years. I itch all the time, I'm nauseas from the meds and have other issues continually crop up. Since this is so rare, it's hard for them to have a "hard and fast" diagnosis or resolution to this week's anomolly. Bottom line, I think they just try something and see what it does! I wish you all the best and hope you feel better soon!
  • natalie14
    natalie14 Member Posts: 36

    Cutaneous T-Cell
    Information has been choppy and I feel like we're pretty much doing the "trial and error" thing. I was on PEGASYS Interferon injections weekly and Targretin daily. Insurance decided the injection chemo I was using was too expensive. So, I started an Alpha Interferon injection 3 times a week. That finally got toxic in my system and after 9 months of appeals and irritating anyone I could find :) They approved the PEGASYS again. Well, now my body says no. So I'm supposed to start Vorinistat. It's supposed to be delivered tonight. My white and red blood counts have progressively reduced and we did try Neupogen injections but they didn't help. I've got another PET Scan scheduled for Thursday so I'm anxious to see results from that. I haven't felt good in 2 years. I itch all the time, I'm nauseas from the meds and have other issues continually crop up. Since this is so rare, it's hard for them to have a "hard and fast" diagnosis or resolution to this week's anomolly. Bottom line, I think they just try something and see what it does! I wish you all the best and hope you feel better soon!

    Im sorry to hear not much is
    Im sorry to hear not much is working. Have they suggested an stem cell transplant? I wish you the best and keep in touch. Natalie
  • sparkling
    sparkling Member Posts: 6
    natalie14 said:

    Im sorry to hear not much is
    Im sorry to hear not much is working. Have they suggested an stem cell transplant? I wish you the best and keep in touch. Natalie

    My husband has it.
    He was diagnosed in 2007 after having thyroid cancer surgery and a partoid tumor surgery. It was found by a *accident*. He had pneumonia between surgeries. A ct scan was done in 2005 but the idiot radiologist never recorded the mass. SO when he was in for pneumonia it was there and noted "by the way the mass on the pancreas is still there and slightly larger." THUD

    He's done a series of CHOP with very little change in the size of the mass. His last treatment was Dec '08.

    We are struggling daily. He has pain constantly in his hands/feet/trunk. He's on many different meds to just manage this. I guess in the grand scheme of things he is a miracle as most people don't live mre than 5yrs.

    He is not a candidate for Stem Cell Transplant. He'd never make it through the treatment to get to that point.
  • sparkling
    sparkling Member Posts: 6
    sparkling said:

    My husband has it.
    He was diagnosed in 2007 after having thyroid cancer surgery and a partoid tumor surgery. It was found by a *accident*. He had pneumonia between surgeries. A ct scan was done in 2005 but the idiot radiologist never recorded the mass. SO when he was in for pneumonia it was there and noted "by the way the mass on the pancreas is still there and slightly larger." THUD

    He's done a series of CHOP with very little change in the size of the mass. His last treatment was Dec '08.

    We are struggling daily. He has pain constantly in his hands/feet/trunk. He's on many different meds to just manage this. I guess in the grand scheme of things he is a miracle as most people don't live mre than 5yrs.

    He is not a candidate for Stem Cell Transplant. He'd never make it through the treatment to get to that point.

    I should specify that he
    I should specify that he has Peripheral T Cell Non Hodgkins Lymphoma NOS, not Cutaneous which is a different diagnosis.
  • natalie14
    natalie14 Member Posts: 36
    sparkling said:

    I should specify that he
    I should specify that he has Peripheral T Cell Non Hodgkins Lymphoma NOS, not Cutaneous which is a different diagnosis.

    I am so sorry to hear of the
    I am so sorry to hear of the pain he is in. How long has he lived with this? Keep praying and know you have support here. Blessings, Natalie
  • sparkling
    sparkling Member Posts: 6
    natalie14 said:

    I am so sorry to hear of the
    I am so sorry to hear of the pain he is in. How long has he lived with this? Keep praying and know you have support here. Blessings, Natalie

    He was given his diagnosis
    He was given his diagnosis in the spring of 2008.