Hi, does anyone have experience of HL coming back? I finished my chemo last September had PETs scan in October which was clear, two checks ok since, had a cough start 6 weeks ago which got worse& breathless GP sent me for X-ray I have fluid and partially collapsed lung, CT scan yesterday showed issues on lymph nodes, seeing haematologist tomorrow , just feeling utterly helpless at the moment, would appreciate anyone experience or it returning if your able to share please
Hi Kjan and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your concerns.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma 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.
Although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well especially as over my first 15 years I relapsed multiply times with the longest remission being only about 9 months……
I am now coming up to 9 years since my last treatment and remain in remission so even although this may be a relapse you are looking at there are treatments available to fix this.
Over the years I have volunteered on here and with Lymphoma Action I have talked with many folks with HL navigate the same journey you may be on.
Always around to chat and help out.
