Mediastinal B-Cell NHL -R-EPOCH

Unbreakable1
Unbreakable1 Member Posts: 14 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi, I am new to this forum. I am going in for my 6th chemo treatment of R-EPOCH tomorrow. Originally my Oncologist was hoping the cancer would be gone by the 4th treatment and I would need a total of 6 treatments. My PET scan after 4 treatmetns showed the cancer had shrank, but still there. My Dr said this is still great news as its respondong to treatment. I have another PET scan scheduled for 2 weeks after my 6th treatment. I am assuming I am going to have two more of R-EPOCH. I am hoping that it is gone as I do not want to do radiation because my Oncologist said if I get radiation, there is a risk of getting breast cancer or heart and lung issues in the future. Also, when I am done with treatment he wants to send me to specialists to see if I need a stem cell/bone marrow transplant. I DO NOT want a stem cell/bone marrow transplant. Has anyone needed radiation or stem cell/bone marrow tranplant after R-EPCOH?

 

 

Comments

  • po18guy
    po18guy Member Posts: 1,465 Member
    #2
    Get a second opinion!

    Second opinions save lives. Had I not obtained one, I would have died in 2008. As well, you have the option of other drug regimens. Bendamustine+Rituxan is one of them, and there are clinical trials (highly recommended) and newer drugs. In many cases DLBCL  is pretty much gone by the fourth treatment, but many require six. Still, you want to be certain of both diagnosis and treatment options, and that is where a second opinion comes in. If you are not at such a facility, you may find the best centers (in the US) here: https://www.cancer.gov/research/infrastructure/cancer-centers/find 

  • PBL
    PBL Member Posts: 366 Member
    #3
    Why not?

    Hi,

    You do not give much detail regarding yourself or your mental representations of SCT, so it is difficult to make out your reasons for not wanting a transplant. I am under the impression that it may be essentially fear and/or insufficient information.

    What I suggest is your hem/onc's logic for going down that path is that:
    1) PMBCL is a subtype with a reputation for having better outcomes than "standard" DLBCL;
    2) in your case, while it did show response to treatment, that response wasn't as rapid and clear-cut as expected;
    3) in that context, a SCT may be your best shot at definitively wiping out that cancer  - which is what any patient wishes for.

    Po18guy's suggestion of getting a second opinion at a major cancer center, of course, makes good sense. The transplant specialist consult might help clarify the thinking behind the course of your disease  and transplant as a treatment option, but if the issue is one of trust in your current medical team, then independently seeking a second opinion may help you decide what to do in your best interest.

    Whether it is the transplant specialist consult or a second opinion, perhaps preparing for such an appointment with a list of questions such as why this is suggested, what is the expected result, etc. would allow you to feel more confident in your treatment decision as well as your medical team.

    I hope this helps.

    PBL

  • Unbreakable1
    Unbreakable1 Member Posts: 14 Member
    #4
    po18guy said:

    Get a second opinion!

    Second opinions save lives. Had I not obtained one, I would have died in 2008. As well, you have the option of other drug regimens. Bendamustine+Rituxan is one of them, and there are clinical trials (highly recommended) and newer drugs. In many cases DLBCL  is pretty much gone by the fourth treatment, but many require six. Still, you want to be certain of both diagnosis and treatment options, and that is where a second opinion comes in. If you are not at such a facility, you may find the best centers (in the US) here: https://www.cancer.gov/research/infrastructure/cancer-centers/find 

    I should get a second opinion

    I should get a second opinion on the PET scan results or for further treatment. According to my PET scan results my mass was pretty big. On 4/9/21 my mass was 11cm Transversly and 13.3 cm anteroposteriosly. On 7/9/21 it went down to 7.8 cm transversly and 3.1 cm anteroposteriosly. I really dont want radiation because of the possible future side of effects of breast cancer and lung and heart issues. But if I have to, I guess I will. I was given the option of R-CHOP & radiation or R-EPOCH and a very small possibility of needing radiation. I chose R-EPOCH.

  • Unbreakable1
    Unbreakable1 Member Posts: 14 Member
    edited August 2021 #5
    PBL said:

    Why not?

    Hi,

    You do not give much detail regarding yourself or your mental representations of SCT, so it is difficult to make out your reasons for not wanting a transplant. I am under the impression that it may be essentially fear and/or insufficient information.

    What I suggest is your hem/onc's logic for going down that path is that:
    1) PMBCL is a subtype with a reputation for having better outcomes than "standard" DLBCL;
    2) in your case, while it did show response to treatment, that response wasn't as rapid and clear-cut as expected;
    3) in that context, a SCT may be your best shot at definitively wiping out that cancer  - which is what any patient wishes for.

    Po18guy's suggestion of getting a second opinion at a major cancer center, of course, makes good sense. The transplant specialist consult might help clarify the thinking behind the course of your disease  and transplant as a treatment option, but if the issue is one of trust in your current medical team, then independently seeking a second opinion may help you decide what to do in your best interest.

    Whether it is the transplant specialist consult or a second opinion, perhaps preparing for such an appointment with a list of questions such as why this is suggested, what is the expected result, etc. would allow you to feel more confident in your treatment decision as well as your medical team.

    I hope this helps.

    PBL

    I havent completely ruled it

    I havent completely ruled it out, but my Oncologist will be sending me to Keck USC to see if I need a SCT. The only knowledge I have is from what I have read about and a friend having gone through the same thing. I will see what they say. Did you have  an SCT? What was the process like? how long was the recovery?   

  • PBL
    PBL Member Posts: 366 Member
    #6
    You should be in excellent hands

    ... your oncologist is apparently referring you to as good a teaching hospital as they get.

    Having an indolent lymphoma, I haven't personally had the SCT experience - yet; only 6xR-CHOP and 2-year R maintenance so far. Maybe some time down the road... And, who knows? by the time recurrence is detected, my hematologist may skip that and go straight to CAR-T cells!

    Several folks on this forum have gone through a SCT, though, starting with po18guy, who should be in a position to answer any remaining questions after you have had that consult.

    Do you have anyone who can go with you and maybe take some notes during the appointment?

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