grey zone lymphoma

ibecancerfree
ibecancerfree Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1

My best friend is being treated for grey zone lymphoma. He has had 6 rounds of chemo , 4 rounds of EPOCH and 2 rounds of ICE. The tumors in his chest are not shrinking. Any info on the treatment of this type of cancer would be greatly appreciated. Thank you very much

Comments

  • po18guy
    po18guy Member Posts: 1,465 Member
    #2
    A second opinion saves lives

    The first thing I would wonder about is the pathology. If cancer does not respond to the standard treatment, it might actually be a different variety which calls for a different treatment. One of those two regimens should have knocked it down. If your friend is not being treated at a National Cancer Institute designated cancer center, I would strongly suggest a second opinon at one of the comprehensive centers. Lymphoma can be extremely difficult to correctly identify. For example, I was initially misdiagnosed at a local center with "abnormal cells" but no cancer. I went to an NCI designated center and was then properly diagnosed and treated. Yet, even after seven years of fighting it, the last biopsy was still a very difficult call for the pathologist.

    My concern is that they may be treating a diffierent type of lymphoma that does not respond to B-Cell Lymphoma treatment. There is the possibility that it is actually a T-Cell Lymphoma, as happened in my case. Or, there could be some unusual mutations in the cells that require a different teatment altogether. A clinical trial may be appropriate (I have participated in two), as this is how scientific knowledge is advanced. 

  • ibecancerfree
    ibecancerfree Member Posts: 4
    edited June 2016 #3
    po18guy said:

    A second opinion saves lives

    The first thing I would wonder about is the pathology. If cancer does not respond to the standard treatment, it might actually be a different variety which calls for a different treatment. One of those two regimens should have knocked it down. If your friend is not being treated at a National Cancer Institute designated cancer center, I would strongly suggest a second opinon at one of the comprehensive centers. Lymphoma can be extremely difficult to correctly identify. For example, I was initially misdiagnosed at a local center with "abnormal cells" but no cancer. I went to an NCI designated center and was then properly diagnosed and treated. Yet, even after seven years of fighting it, the last biopsy was still a very difficult call for the pathologist.

    My concern is that they may be treating a diffierent type of lymphoma that does not respond to B-Cell Lymphoma treatment. There is the possibility that it is actually a T-Cell Lymphoma, as happened in my case. Or, there could be some unusual mutations in the cells that require a different teatment altogether. A clinical trial may be appropriate (I have participated in two), as this is how scientific knowledge is advanced. 

    misdiagnosis

    Thank you very much for replying, I will pass this on to my friend. He is having another biopsy tomorrow morning. The dr. is hoping the 1st diagnosis was wrong. I pray everyday for all cancer patients and hope you are enjoying good health now. I have lost loved ones to cancer and am a cancer survivor myself. Thanks and keep fighting.

  • po18guy
    po18guy Member Posts: 1,465 Member
    #4
    Life is worth living

    After dealing with T-Cell Lymphoma for 8 years, two relapses and one mutation into two different aggressive T-Cell Lmphomas, I am now dealing with Graft versus Host Disease which comes with most transplants. Still, I love life, as its experience is just all the more intense now. All the best to your friend. As to the biopsy, it should also be reviewed at an NCI cancer center, as they have the best of the best pathologists. If it is any form of T-Cell Lymphoma, post an answer or PM me. I can link him to resources in the US, or Europe, if that's where he is. I live to help defeat this stuff.   

  • ibecancerfree
    ibecancerfree Member Posts: 4
    edited June 2016 #5
    4th biopsy

    My friend got same biopsy results as before. He has grey zone lymphoma with CD30. He starts another chemo tomorrow called R-GemOx. He has a tumor in chest that has spread during previous chemos. Dr. hopes this chemo will shrink tumor by at least 50% , then he will need donor for stem cell transplant. He only has 2 relatives who qualify to be tested as donors. I can't , too old and have had cancer. I hope and pray they find a donor. Have any of you taken this chemo with success?

  • Margiein tucson
    Margiein tucson Member Posts: 11
    #6
    Absolutely , did they send

    Absolutely , did they send the biopsy out for special testing ...... ? If pathology is not 100% accurate things don't go well. We had a second opinion and this doc made special requests on the biopsy tissue that our first doc didn't even request ....... Perhaps another biopsy is in order ? I have read that the "best " way to get path is to do excisional tissue not needle aspiration tissue . Sorry to hear you have been through so much thus far . 

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