Hi I’m new to this group and would be grateful if anyone has any advice to share about a similar experience to me.
I was treated for a Brain Tumour in 2024, finishing Chemo and Radiotherapy in November 2024. My appointment in April 2025 it showed the tumour had shrunk. My bloods were normal in August. 2025. My next appointment is in Spring 2026.
With the exception of one or two bouts of sickness i haven’t had too many side effects. The most concerning thing for me is that even 12 months after finishing treatment my head still feels ‘muzzy’ (it’s a bit like a hangover but I rarely drink!).I have read that this can occur for weeks or even months after treatment but 12 months seems quite a long time to me. I wanted to ask if anyone else has experienced this please? If you had initial ‘muzziness’ how long did it last? Have you done anything that has alleviated the issue? Any help/ advice will be gratefully received.
thank you
Hi FinBear and a warm welcome to this little corner of the Community.
I am Mike and I help out around our various Lymphoma groups.
I have been on my Lymphoma journey for about 25.5 years first diagnosed way back in 1999 at 44…… with my rare (8 in a million) incurable but treatable type of Skin (Cutaneous) T-Cell Lymphoma
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I had some intensive treatment between Dec 2013 to late 2015 (750+ hrs chemo, 45 radiotherapy zaps and 2 Allograft (donor) Stem Cell Transplants)……. but we I turned 70 a few weeks back and I am coming up to 10 years since my last treatment and doing great.
But during and post my main treatment I lived with a head that was mince…… often confused, forgetful…… spaced out. At 10 months post my second Allo SCT my infections started resulting in 5 times back in hospital (38 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Neutropenic Sepsis and A Fib…… so this just made the mince head last longer….. but I am fine now, although, like half the country I have been fighting a viruses and Pneumonia for the past 7 weeks……. Post Lymphoma Treatment - the gift that keeps on giving.
Thank you so much for your reply. You certainly have been through it. That is far more treatment than I had. I’m so glad you’ve beaten what’s been thrown at you. I hope I have the fortitude to kee
going cos there are times when things feel hopeless. It’s lovely to read how positive you are - thank you. I shall take a leaf out of your book. Merry Christmas x
