[EDIT in replies below] Hello everyone. I have been receiving Pola-R Chop chemo for DLBCL since May, and had my last dose in September. Interim PET scans still showed some remaining activity. I was really hopeful that my final PET scan would show complete response, but it seems like there may be evidence of 'disease progression', ie. one remaining area of persistent uptake, where the original large lump was located. It is not in a position where a biopsy can be done, so I have to have another PET scan in a few weeks' time to see if it has grown, in which case it is still lymphoma. I'd like to ask if anyone has experienced this and could it be that the 'hot spot' is as a result of something else, ie. scar tissue, inflammation, etc?
Hi Dorothy, I was diagnosed with Dlbcl stage 3 last year I had the same thing happen to me and after final pet scan I was still showing evidence of disease in an area that could be biopsied
I had it biopsied and it turned out to be no sign of lymphoma it was dead cells, I then went on to have 20 rounds of radiotherapy on this persistent lymphnode as a precaution,
I had to them wait 3 months for a scan- I was scanned again and this nuisance of a lymph node was still lighting up- they decided to remove this lymphnode and have it biopsied.
it has come back as no sign of lymphoma but I’m still waiting to be told this officially by the haematologist as I’ve only been told by my nurse - so just because it’s still lighting up on a scan doesn’t always mean you still have lymphoma. It could be inflamation and hopefully it’s just dead , wishing you luck and I won’t say try not to worry, because you obviously will worry.
Hi DorothyP and a second welcome to this corner of the Community....... I am Mike and I help out around our various Lymphoma groups.
I don’t have DLBCL but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
What you are experiencing happens a lot and as you already see from Pola1920 this more than often turns out to be scar tissue........ it has happened a few times to me.
Where it does happen to still be active this can be mopped up using radiotherapy or targeted therapy.
((hugs))
Thanks Highlander, I appreciate your reassurance.
Having been on this journey for so long I have experienced it all.
Your default should be 'this has worked'....... but if there is something left it can be dealt with. Due to my types of NHL I relapsed multiple times over the years, infect the longest remission I had over the first 14 years was 9 months.....
But I turn 69 in Nov and in 9 days, as a family we will be celebration 9 years since my last treatment and we continue to look forward to what else life has in store first us to enjoy.
I turn 70 next week... was hoping to celebrate being in remission with the family but may have to wait a bit longer. Thanks for your reply and well done with your journey.
Happy Birthday Dorothy for when it comes….. I missed my 60th as it was a month after my second Allo (donor) Stem Cell Transplant but it was well celebrated 6 month after and next year we will celebrate my 70th
So it is progressive disease, already spreading, I saw the PET scan image, the Dr pointed out growth in one centre and a new one appeared since last PET scan. I know from research that this means that it is Primary Refractory, ie. Didn’t respond to first line treatment and that this means it will be much more difficult to treat, therapies will be harsher and outcomes more uncertain. I am now a High Risk patient .
The Haematology team have proposed and I have agreed to be put forward for consideration for CAR- T therapy at UCL Hospital in London as 2nd line treatment, and they will consider and let me know if I am accepted. (It is very expensive, costs £282 000 per patient so has to be approved against strict criteria.) I have a good chance of being approved. I should hear sooner rather than later, given the aggressive nature of DLBCL. Dr reassured me that if not approved, they would have a next line of treatment for me. So now we know what we will be dealing with; it is disappointing that first line treatment has failed, but there is still hope of remission, if not with CAR-T then with other new and emerging therapies.
Hi DorothyP a plan is a plan whatever it is......
Thank goodness for CAR-T......... and let's hope that this can be used....... although back 10+ years ago CAR-T would have not worked for my types of Lymphoma but thank goodness for SCT.
In 2015 my second SCT was seen as my last available treatment but 9 years on some new treatments have been developed for my T-Cell so I now have a fall back if required ((hugs))
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