For DA-EPOCH-R, how common is 8 cycles?

georich24
georich24 Member Posts: 2
edited April 2018 in Lymphoma (Hodgkin and Non-Hodgkin) #1

My wife who's 30 was diagnosed with NHL (primary mediastinal b-cell lymphoma) late last year and has already completed her 6th cycle 2 weeks ago. Throughout the whole course, she's had followup CT scans to keep track of the tumor size found under her chest:

After 4th cycle, CT scan showed tumor shrink from 7.4x3.2cm to 4.7x1cm

After 6th cycle, CT scan showed tumor shrink from 4.7x1cm to 3.7x0.6cm

Because of the continued response (which is great), our doctor advised continuing for 2 more cycles (which is not so great). My wife had a really hard time after the 6th cycle and we were hoping that the 6th would have been the last. Another cause for concern is she's had echocardiograms as well and her heart's ability to pump blood has surely been affected by the treatment. I don't remember the numbers but while the doctor says she's still at a good level, numbers are still dropping slowly. She's actually going to have another echocardiogram test later today to see where she's at now.

So yeah, I was just wondering how common going up to 8 cycles is. I haven't read a lot of experiences from other people yet online but the ones I've seen only always finish treatment at 6 cycles.

Comments

  • po18guy
    po18guy Member Posts: 1,505 Member
    #2
    Pretty much standard...

    As I understand it. However, DA R-EPOCH is not the only treatment. It is one of several potential options. The thing is that you must balance a diminshed heart capacity against what you know the cancer will do if not stopped. DLBCL can often be placed in a lifetime remission. If it recurs, it is more problematic.

    Sounds like you might be in eed of a second opinion from a DLBCL specialist at a major cancer/research center. It cannot hurt, and you may learn of better options.

  • georich24
    georich24 Member Posts: 2
    edited July 2018 #3
    So just an update for anyone

    So just an update for anyone interested. My wife finished all 8 cycles about a month and a half ago. Repeat CT scan showed the tumor still being at around the same shrunken size (0.7x3.4 cm). She also had a PET CT scan which shows that the tumor's maximal SUV dropped from 18.4 last year before starting treatment to 3.2 today, and a deauville score of 4. We will be meeting with her doctor next week so I hope everything is all good so far (that deauville score sounds worrying though since I noticed that the range goes from 1 - 5)

  • Tropical
    Tropical Member Posts: 6
    edited July 2018 #4
    I’m sorry that your young

    I’m sorry that your young wife has to be going through this. I also went through da-epoch-r, albeit 6 cycles about 1 year ago. My dr had told me anywhere between 4-8 cycles. As you know, the pathology is super important with this disease. Mine was sent to 3 different labs. At first they thought it was an intermediate grade; at another instance they suspected Burkitts, finally they concluded it was a high grade dlbcl. 6 cycles was tough enough so I can imagine what your wife had to endure. I’m not a dr but I suspect that your wife’s dr is aiming at eradicating her disease. Nowadays there are several options if one or more don’t succeed in getting rid of the cancer. You and your wife have many reasons to believe in a cure. I’ll concur with po18guy in that it is important to be treated at a recognized cancer Center. Your wife’s next steps are important. Please keep us posted. Best of luck to the both of you - you’re both in my thoughts. 

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