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Thread: Hodgkin Lymphoma Nodular -sclerosing classic-type in 15 year old son

  1. #1
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    Hodgkin Lymphoma Nodular -sclerosing classic-type in 15 year old son

    Hi

    My son has Stage 3B classic HL, diagnosed with a 6 x5 cm underarm node, then 2 or 3 3 x 4cms on collar bone, as well as in spleen.
    He had no symptoms at all, though as he was growing tall rapidly we started to note little weight gain, so this was possibly a B-symptom. He has put on three-quarters of a stone since, probably due to eating lots.

    It was really hard to get him diagnosed, he simply had a small enlarged node in his underarm on and off for a few months before it enlarged rapidly before Xmas. GP said she could not feel any others and asked us if wanted to be referred or 'watch and wait'. We asked for referral, and we were seen in two days by NHS. A child specialist checked him over thoroughly for 10 minutes and took bloods, but said she had few concerns though we had a follow up scan 6 weeks later. At the scan a junior 'CT scanner-ologist' (I've just made that word up) said he thought it was just an enlarged node but wanted to get advice of his senior, who found the other enlarged nodes and also in spleen.

    Bloods at diagnosis were ok except LDH of 636 which was concerning to us. A week later we were referred to Birmingham Children's Hospital where we had the PET scan, and further blood test revealed LDH now 1200 (an increase of 600 in a week). Of course this is deeply worrying. All other bloods ok - HB123, Neuts 6.1, HB 9.6, Platelets 256, CRP 2, ESR 5. He is fine in himself and still going to school and coming to football with me.

    That was 2 months ago, he has since had 2 lots of OEPA chemo though his central line, and is due 4 rounds of Copdac. OEPA-Copdac is the pediatric version of ABVD-Beacopp combination.

    At first we felt it was working, but in recent weeks another node has appeared beneath his ear. He had his interim-PET scan today which we know is going to be PET-positive because of this new node, which is obviously bad news. Bizzarely however, the 5 x 6cm underarm node has seemingly disappeared altogether (confirmed by the specialist - by touch at least, last week), and the same seems to have happened to the supraclavical neck nodes, which can barely be felt at all. Perhaps just one is vaguely palpable. The spleen is no longer palpable either when the specialist felt for it. So it all seemed to be going so well and perhaps heading for a negative interim PET after the 2 chemo blocks.

    A few questions: -

    1) Has anyone else had situation where some large nodes disappear and then a new one appears nearby? What could be going on?

    2) I don't now what his LDH is now, it was 1200 mid-February so that was 2 months ago. Could it be a false reading to go up by 600 in a week or two? We had walked a mile to the hospital on the day, I read that exercise (albeit moderate) can raise LDH. I know LDH can go to 4000 in some lymphomas.

    3) So as he seems likely to have a Positive interim scan, or Refractory lymphoma at least to some degree, what next? Prognosis is grim I believe, also with LDH being so high Stem-cell treatment might be a problem. I think he will have radiation and out-see the 4 Copdac treatments, or can they escalate it like escBeacopp in adults?

    So many questions here. Sorry folks.

  2. #2
    Moderator Top User
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    Hi Nick and welcome to this forum, lets see what responses you get, especially about how you place importance on LDH levels and what they infer.

    Nick and I have shared thoughts on the macmillan forum to

    regards
    John
    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. #3
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    Quote Originally Posted by johnr View Post
    Hi Nick and welcome to this forum, lets see what responses you get, especially about how you place importance on LDH levels and what they infer.

    Nick and I have shared thoughts on the macmillan forum to

    regards
    John
    Hello John,

    Yes mate, I do honestly believe its a strongly prognostic feature, a general marker of tumour burden and stage. Several studies have highlighted correlation between LDH and prognosis, though bizarrely for some people even with Stage 4, LDH remains within normal parameters, which is where I find it confusing. One or two other studies suggest high LDH can be arrested via more aggressive treatment. But not sure when it is as unusually high as 1200.

    Hoping this can be reversed, but with such a high LDH I'm not surprised its much harder to get a negative interim-PET.

    In contrast I know his CRP and ESR were very low or good (just 2 and 5 respectively), you would expect them to correlate to LDH to some degree as they are basically general markers of inflammation which can highlight the aggression of tumours, yet his were remarkably low (ESR 'remarkable' being the word used by the oncologist).

    Interim-PET is so important and 85% achieve negative, but I am 95% sure its not going to happen here sadly. In fact if it has spread from the neck to the nodes by his ear, it may well have done the same from his spleen too. Yet it seems to have cleared his largest 5 x 6cm underarm node altogether. So what I cannot understand is that it seems to have worked very well in one area, but not in another.
    Last edited by Reanswolf; 04-26-2019 at 07:02 AM.

  4. #4
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    Hi Reanswolf,

    sorry for meeting you here, having a child enduring all of this must be a horrible thing.
    From your post it seems he did a PET yesterday.....its still very present to me how horrible waiting for the resulst is it....and even more when you have the weekend in the middle....so hold on there.

    Not sure how reliable LHD can be.... i remeber reading that injuries ( sports for example ) can also cause it to raise so if your son is still active that can explain ?!
    And acne might be playing a trick near his ear !!!

    Finger crossed for e good PET result.

    Take care.
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    Dev/18: PET-CT Done. All good
    Apr/19: Follow up. All good.
    Oct/19: Follow up. All good.
    ... on to follopw ups...

  5. #5
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    Hi Jotey
    I appreciate your thoughts, thank you.
    He can't do much physical action since having his central line in about 2 months ago, but on the day the blood test was taken, we had to walk about a mile to the hospital though I doubt that would effect his LDH that much. With his level of LDH, it is meant to be terminal, but he has just skipped off with his 2 mates to go to the pictures more or less right as rain.

    When he first had his chemo, he lost all of his hair after the 2nd lot, and had spots all over his head as though it was follicular shock. He had antibiotics for that, but I noticed some acne and a few spots have again developed over small areas of his head. But I can't imagine the node in question would be enlarged because of that. In fact the exact same node on the opposite side of his head underneath the mastoid bone also feels slightly hard and enlarged, but not as much. Symetrical ones, unusually I would have thought.

    Would love to think it was though due to something other than lymphoma (:-
    Last edited by Reanswolf; 04-26-2019 at 01:19 PM.

  6. #6
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    Hi Reanwolf....hows your son doing ?

    Hope you had a good result form pet ( "no news is goods news" right ?)

    Take care.
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    Dev/18: PET-CT Done. All good
    Apr/19: Follow up. All good.
    Oct/19: Follow up. All good.
    ... on to follopw ups...

  7. #7
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    Hi Jotey

    He had a PET-Negative Interim PET with Deauville score of 2.

    Still not there, and perhaps never will be, but it was pretty good news.

    Thank you for asking.

  8. #8
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    Hi Reanswolf,

    I'm not all that active here anymore but I do check in from time-to-time. (I am very active on the relapsed Hodgkins Facebook page.) There aren't very many here with Hodgkins, so I wanted to jump in and say hello and if you ever have any questions at all, I would be happy to answer them if I can. My son was diagnosed three years ago (initially misdagnosed with ALCL - rare T-Cell lymphoma) and has relapsed twice so we've been around the block with this. Wonderful to hear about the Deuaville 2! That is considered complete response, so it's a great score to have. High LDH is a risk factor, but it's not a conclusive one, as you know, so very glad to hear he's doing well now!!
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

 

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