Cutaneous Tcell Lymphoma - 2013

dadoftwins
dadoftwins Member Posts: 13 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

hi  Looking for patient or caregiver to discuss diagnosis.  My husband has CTCL and LGL Leukemia.  Having both is making treatment for either very difficult.

anyone else in the same small boat?

 

I'd love to chat.

thanks!

amy

 

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2
    Quite a challenge

    Very sorry to hear of his diagnosis, though it is good that both are indolent forms of cancer. Thus, there may be more time to treat them and wait for the arrival of new treatments. Some Cutaneous Lymphomas are treated topically, which would not affect the systemic treatment of the Leukemia, I would think. Since both are indolent cancers, has there been any thought of alternating treatments? Because of the problems posed by a dual diagnosis, I would seek an opinion from a large academic research faciity, if you have not already done so. Travel may be involved, but that is simply the price to pay. As well, there may be a clinical trial available, although the dual diagnosis might complicate entry into a trial. I would think that the more opinions you seek on his diagnosis the better. 

    I am receiving a new biological drug (Istodax, or Romidepsin) that has been shown to be remarkably effective against T-Cell Lymphomas (both cutaneous and systemic). The flip side is that it can lower blood counts, which the LGL Leukemia may already be doing. However, the drug is tolerated well, has low toxicity and can be given even to patients in their 80s. Since both of his malignancies involve T-cells, there is potential - and only potential here - that such a treatment might improve both conditions, actually. Maybe not, but I am trying to brainstorm here. I would focus on additional opinions, as he has two rare cancers, neither of which most oncologists have likely ever seen.

  • dadoftwins
    dadoftwins Member Posts: 13 Member
    #3
    po18guy said:

    Quite a challenge

    Very sorry to hear of his diagnosis, though it is good that both are indolent forms of cancer. Thus, there may be more time to treat them and wait for the arrival of new treatments. Some Cutaneous Lymphomas are treated topically, which would not affect the systemic treatment of the Leukemia, I would think. Since both are indolent cancers, has there been any thought of alternating treatments? Because of the problems posed by a dual diagnosis, I would seek an opinion from a large academic research faciity, if you have not already done so. Travel may be involved, but that is simply the price to pay. As well, there may be a clinical trial available, although the dual diagnosis might complicate entry into a trial. I would think that the more opinions you seek on his diagnosis the better. 

    I am receiving a new biological drug (Istodax, or Romidepsin) that has been shown to be remarkably effective against T-Cell Lymphomas (both cutaneous and systemic). The flip side is that it can lower blood counts, which the LGL Leukemia may already be doing. However, the drug is tolerated well, has low toxicity and can be given even to patients in their 80s. Since both of his malignancies involve T-cells, there is potential - and only potential here - that such a treatment might improve both conditions, actually. Maybe not, but I am trying to brainstorm here. I would focus on additional opinions, as he has two rare cancers, neither of which most oncologists have likely ever seen.

    thanks for the advice and

    thanks for the advice and info on the new drug.  That is what we keep thinking...if they treat the skin cancer first instead maybe we can get the leukemia resolved later since it's "not so bad".  We go to the James Cancer Center at Ohio State.  they are affilated with the National Cancer Institutes and we are confident in our doctors (one hematologist and the other a dermatologist that work together).  I"ll put Istodax on my research list.  thanks!!!   amyLaughing

  • po18guy
    po18guy Member Posts: 1,508 Member
    #4
    Both "should be" indolent, which gives the blessing of time

    Cutaneous T-Cell Lymphomas have been known to disappear rapidly when confronted with Istodax. My aggressive, systemic T-Cell Lymphoma did. Once the CTCL is under control or gone, I would guess that the chronic leukemia may be addressed. Even though you are at an NCI institute, a second opinion on both diagnosis and treatment is highly advised. A second opinion saved my life. 

Discussion Boards