Cutaneous Lymphoma

TJL2
TJL2 Member Posts: 6
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Comments

  • po18guy
    po18guy Member Posts: 1,505 Member
    #2
    OK...

    T-Cell or B-Cell?

  • TJL2
    TJL2 Member Posts: 6
    edited August 2018 #3
    po18guy said:

    OK...

    T-Cell or B-Cell?

    T-cell anaplastic large cell

    T-cell anaplastic large cell

  • po18guy
    po18guy Member Posts: 1,505 Member
    #4
    Ah...

    It is a pain in the ***, chronic, but manageable disease that has several new treatments. The danger is that it can go deeper than the skin, becoming systemic - and is thena much more challenging fight. But, you need a T-Cell Lymphoma specialist, as all T-Cell Lymphomas are very rare. A couple of respources. First, the Cutaneous Lymphoma Foundation and secondly, the T-Cell Leukemia Lymphoma Foundation and their list of specialists.

  • TJL2
    TJL2 Member Posts: 6
    #5
    Tests

    Scheduled for PET scan, CT scan and bone marrow biopsy next week.

  • po18guy
    po18guy Member Posts: 1,505 Member
    #6
    Do thjey suspect that it has

    Do thjey suspect that it has become systemic, or are these precautionary moves?

  • TJL2
    TJL2 Member Posts: 6
    edited August 2018 #7
    po18guy said:

    Do thjey suspect that it has

    Do thjey suspect that it has become systemic, or are these precautionary moves?

    Diagnostic? The excisional

    Diagnostic? The excisional biopsy indicated that "The differential diagnosis includes lymphomatoid papulosis type C, primary cutaneous anaplastic large cell lymphoma, and skin involvement by systemic anaplastic large cell lymphoma. Also, CD30 positive cells present in dense nodules. CD3 and CD20 positive for mixed T- and B-cells.

  • po18guy
    po18guy Member Posts: 1,505 Member
    #8
    Close to diagnosis, but still not there

    If not done already, I would have a major cancer center or university pathology lab re-examine the biopsy sample. Anything that is considered to be: "clinically benign but histologically malignant" and which "can evolve into lymphoma." is not something to mess with. CD30+ is a good sign, as there is a drug (Adcetris) which specifically targets CD30 on then affected cells. It may be an option to treat even a benign cndition, since your situation incolves an excess of lymphocytes which are either benign, or worst case, malignant.

    If your doctor is doing some head scratching, you are well advised to seek out a T-Cell specialist at one of the locations above. The last thing you want is for a benign condition to morph into cancer, or a skin-centered T-Cell Lymphoma to become systemic and thus, much harder to stop.

  • TJL2
    TJL2 Member Posts: 6
    #9
    po18guy said:

    Close to diagnosis, but still not there

    If not done already, I would have a major cancer center or university pathology lab re-examine the biopsy sample. Anything that is considered to be: "clinically benign but histologically malignant" and which "can evolve into lymphoma." is not something to mess with. CD30+ is a good sign, as there is a drug (Adcetris) which specifically targets CD30 on then affected cells. It may be an option to treat even a benign cndition, since your situation incolves an excess of lymphocytes which are either benign, or worst case, malignant.

    If your doctor is doing some head scratching, you are well advised to seek out a T-Cell specialist at one of the locations above. The last thing you want is for a benign condition to morph into cancer, or a skin-centered T-Cell Lymphoma to become systemic and thus, much harder to stop.

    Tests

    I'll post results of PET/CT tests and bone m biopsy when I get them. Thanks for the replies.

  • TJL2
    TJL2 Member Posts: 6
    #10
    PET

    PET scan results: Normal PET scan. No abnormal metabolic activity.

  • po18guy
    po18guy Member Posts: 1,505 Member
    #11
    Hmmm...

    So, am guessing that it sounds like a lympho-proliferative condition. Lymphomatoid papulosis is such a non-cancerous but still problematic condition. Since it is CD30 positive, it may well respond to Adcetris if it becomes symptomatic to a degree which requires treatment.  

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