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Thread: Diagnosed with Nodular Sclerosis Hodgkin's Lymphoma

  1. #21
    Regular User
    Join Date
    Oct 2016
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    16
    So I am past the halfway point now as I have had 5 treatments, with 3 to go + radiation.

    My midway petscan showed that the mass shrunk from 7cm to 4cm and that the tracer uptake went from 18 to 4.

    That seemed good to me but the doctor was hoping for NED and said this was a partial response as opposed to complete response. This is a deauville score of 4.

    Does anyone have a link to data on relapse percentages if the midway petscan doesn't come back NED?

    Or just relapse percentages in general for stage 1A bulky hodgkins?

    It's getting reduced but I am nervous now based on the above.

    Any feedback is much appreciated

  2. #22
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,303
    Hi, not sure about relapse rates for NS HL but generally they are very low if that reassures you, however stats are meaningless as this is about you and your battle with your disease and that will be unique to you. Partial response can be ok at this stage as radiotherapy is very good at killing off the remaining disease. Some consultants may also consider changing the chemo regime to beacopp though the has been a recent paper that has questioned whether that produces longer term remission in patients with stubborn disease. The reason your doctor would be disappointed is that many patients get a 3 or lower at the mid point scan as abvd is quite effective, however the can be other reasons that can cause the score to be above 3. Have they talked about a second scan at the end of the 4th cycle before radiotherapy starts?
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  3. #23
    Regular User
    Join Date
    Oct 2016
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    16
    Thanks Johnr for the response, I appreciate it.

    Yes, they plan on having another petscan at the end of the 4th cycle before radiation.

  4. #24
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,303
    then may be a question for the consultant is - may I need to have 6 cycles if my disease proves to be stubborn and then have radiotherapy and see what they say and are thinking.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  5. #25
    Regular User
    Join Date
    Oct 2016
    Posts
    16
    I havenít posted an update in quite sometime , but i have been remission since April 2017. I completed radiation therapy to my chest at that time after chemo finished.

    Everything has been going well since then except a couple things. I had a scare in December 2017 when shortly after a pretty bad sinus infection i got a petscan which showed my right 2A lymph node in my neck swelled up to 1.5cm and my right tonsil was swollen. The doctors were concerned it was back, but waited a couple months hoping it was infection related , and fortunately it was. During the subsequent ct scan the lymph node returned to normal.

    Other than that all other pet scans , ct scans, and bloodwork have been normal and within range. The dead tumor in my chest continues to decrease in size during each scan.

    Now i was hoping to post this update at the 2 year mark and say all is still clear, but am experienced the second scare right now as my right 2A lymph node in my neck popped up again as 1.5cm on my two year ct scan, as well as right 3A is .8mm.

    I had an ear infection in my right ear which i had finished antibiotics for about two weeks prior to the ct scan in early April. I felt my Lymph node swollen when i had the infection.

    I am truly hoping it is the same thing that happened the last time i had a cold. But am getting worried as even now about 3 weeks after finishing antibiotics for the ear infection i can definitely feel the lymph node and itís hard as a rock and doesnít hurt.

    I have to come back in for another ct scan of my neck at the beginning of June, or if it doesnít improve come in earlier.

    Has anyone experienced issues or test results lighting up after a bad cold? How long did it take for the swollen lymph node if you had one to decrease ?

    Everything i have read says the lymph node should be decreasing by now and itís not a good sign if itís hard and not painful.

 

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