Further treatment after R-CHOP

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Hello. During the first half of last year I received a full course of six R-CHOP treatments to address lymphoma/DLBCL which manifested itself on my thyroid. This seemed quite successful at the time, especially as my swollen neck shrank noticeably even after my first treatment. Following a scan after my final treatment I was told that my outcome was "successful", albeit subject to a couple of uncertain areas which had to be reviewed in another scan a few months later. In the meantime I was to consider myself as being in remission. I was slightly sceptical even then as I had felt low-level pains in my thyroid area along with some difficulties in breathing and swallowing. I was told these were probably down to "scar tissue" but when the symptoms persisted I requested another consultation which led to my next scan, due after another six months, being brought forward. I'm glad I pushed for this as the results show that the "hot spots" are now more pronounced, and that I will probably need more treatment following a biopsy and strategy planning. Has anyone any experience of this second-line chemo treatment or other approaches which might be tried next? Any comments/anecdotes welcome. I'm glad to see the "good outcome" stories on this forum BTW.

  • Hi again  and sorry to hear that you have uptake again….. unfortunately it can happen.

    10 people with the same type of condition in the same place following the same initial treatment can be treated differently as it’s all to do with how it’s now presenting.

    Second line treatments could be as simple as radiotherapy but there are also various chemos available…… If (like my presentation although not DLBCL) is presenting aggressively then it could be a salvage treatment used to move to treatments like CAR-T or even Stem Cell Transplant.

    At this stage it’s all a guess so let’s see what your clinical team come up with.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi sorry to hear you still have to have more treatment, my husband George (68 yrs) was diagnosed in April with DLBCL, he has since completed his treatment and all his major organs are clear, but there is a small activity in his spine, he is due to start radiotherapy soon, seemingly this is very common with DLBCL,  he is still very tired and sometimes feels like he will never feel "back to normal"  so I don't know if radiotherapy would be suitable for you,  all we can do is be positive and hope for a good result, so good luck and let us know how it goes

    Lind

  • Another treatment after Rchop is Eshap or GDp intense chemo followed by stem cell transplant 

  • Mike/Hibbie/Ghaz,

    Thank you for your replies. A further development: I went for the ultrasound biopsy and the radiologist took the time to explain how the PET scan "lights up" active organs, giving examples of how the brain and heart show so prominently on scans. This apparently also applied to my thyroid a year ago when my condition first became evident; he added that six months ago this bright area was reduced to a small uncertain one, and that now it shows up just slightly more. The haematologist had not explained how mostly successful the R-CHOP treatment had been or that we were only looking at a possible slight uptick. It then became apparent that it was not possible to perform the biopsy because there was so little thyroid left!!! Last year my thyroid nodes had each measured over 4.5 cm across in each direction (no wonder I suddenly had a goitre!), and now one of them is 4 x 7 mm, and the other one more strangely shaped at 3 x 14 mm, but with the thin aspect facing the needle leaving too little tissue to access with the needle.

    Overall it sounds like things might not be as bad as feared, although I still get throat pains and some breathlessness. I could see from the ultrasound how muscles within the throat lie between the surface and the thyroid, so when I look at my throat in the mirror I'm not looking directly at the organ as I had thought, although the pains are still something of a mystery. Maybe I need to bear in mind other possible reasons for the breathlessness, like extended reaction to the chemo or something separate like long Covid.

    It's now a case of waiting for my next haematology consultation, and keeping in mind the possibility of being referred for any other investigation in the meantime, if any are feasible. I'm told that there will now have to be a decision made on whether to refer me for further, possibly small-scale, chemo or whether to wait and scan again at a later date to monitor what happens in the thyroid area.

    The saga continues! All the best to you.

  • Hi  this sounds oh so familiar with regards to things not being straightforward.

    For me it sounds positive so let’s look for some clear I formation and if required a plan to be put in place to move this is a positive direction.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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