Hi I’ve not posted on here for a while. I was confirmed on remission from HL in October 2019, but the treatment hit me quite hard and I was still gradually recovering into early 2020. However, from end of May I gradually started to get symptoms again. First getting short of breath, then coughing, tiredness and fatigued started getting worse, aches and pains everywhere, some night sweats (more than I had first time round) and running a daily low grade fever.
I brought all this up in my check ups with my haematologist and in October 2020 he sent me for a PET scan which came back ok.
So my GP then referred me to a respiratory consultant who I spoke to on the phone 1st March 2021. His first comment when I was talking through my symptoms- “it sounds like a lymphoma, when did you last see your haematologist?”
He’s sent me for some tests and nothing has come back from a respiratory perspective. Bloods show raised levels of ESR, IGA and neutrophil. He’s asked me to track my temperature and weight.
I’ve been recording my temperature for over a month now, and what I’ve seen is that I’m no longer just having a low grade fever. The last few weeks I start as low grade in the morning but by mid afternoon in to the evening I’m between 37.7 and 38.1
I spoke to my specialist nurse and she’s pulled my next haematologist appointment forward from June to next week. Has anyone experience anything similar and what was the outcome? I can’t help but feel something can’t be right if I’m now running an actual fever every day. I’ve had to reduce my hours at work as I can’t cope with a full week. Luckily I work from home so can take a mid day nap if I need to. But this isn’t sustainable. It’s been nearly a year of feeling like this.
Hi again Kaito and sorry to hear about the challenges you have been having, yes some year indeed.
My Lymphoma was rather different and a different treatment journey so don’t have any specific experience that can help apart from over my 21 years I had multiple relapses and a new way forward was always found. Let’s look for this not to be a relapse and a positive way forward is found for you ((hugs))
