R-EPOCH

Looking for anyone who has been through R-EPOCH chemo. My fiancé was just diagnosed. He will have six cycles of this chemo. He completed his first round a few weeks ago. Starts his second round on Friday. He will go 5 days in a row. Looking for personal experiences with this type of treatment - side effects, tips/tricks, etc.

Comments

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member

    Hi cbb411. Am I correct in assuming your fiancé has DLBCL (Dispersed large b-cell lymphoma)?This is an effective treatment for many sub types of DLBCL. I have not had that regimen but I am certain several people here have. To get a viable response you need to include as much data about his diagnosis as possible. Best of luck to the two of you!

  • cbb411
    cbb411 Member Posts: 2 *

    no, he has pmbcl (primary mediastinal b-cell lymphoma)

  • dddgryffindor
    dddgryffindor Member Posts: 1 *

    I am a 22 month PMBCL survivor. There is a facebook group specific to this cancer, just search "Non-Hodgkins Lymphoma Primary Mediastinal Large B Cell Lymphoma" (I would have included the link but apparently I am too new here to be able to do that)

    They are very supportive and quick to answer any questions.

    As far as my experience with DA-R-EPOCH, it can be pretty rough on your body when you're going through it and for about 6 months after. I was pretty tired and experienced some pretty gnarly mouth sores from time to time. My best advise for those is to stay away from sugar and chocolate. They seemed to make it worse when I was experiencing them. They only lasted a few days but maybe ask his oncology team about magic mouth wash. Some people find relief from that.

    I know it's hard right now to be going through it but soon he will be well and this will just a distant memory. Hang in there.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member

    I do believe that is considered a subtype of DLBCL .DA-R-epoch should work well.Best wishes for a full recovery.

  • Galrim
    Galrim Member Posts: 315 Member
    edited September 20 #6

    I was diagnosed with FL in 2018. Transformation to DLBCL in 2021. I received R-EPOCH same number of cycles as your fiancee.

    Reaction to chemo is so very individual. Your overall health and physical condition plays a big part though.

    As for tips and tricks to go through it:

    Allow him to focus entirely on himself
    Encourage him to pay attention to his body. Rest when rest is needed. No matter when or where
    Scrutinize the medical staff on the various aids that can be given to relieve some of the side effects

    R-EPOCH is VERY effective. As my hematologist told me: The majority of patients they dont cure of DLBCL are because the patient cannot tolerate the chemo and have to abort the treatment or have the dosis lowered. Not because its not working as such.
    Leading back to my first lines in this reply:

    Help and encourage him to take care of himself and listen to his body.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited September 20 #7

    Galrim - I would appreciate you sharing your experiences with transformation of FL to DLBCL, perhaps in a new thread. Its a major concern for me. Thanks. My oncologist says the rate of transformation is about 3% per year and that there is usually no doubt when it happens.

  • Galrim
    Galrim Member Posts: 315 Member

    Hi, I will put up a post as a new thread in a few minutes.