Hi
i was diagnosed January 2020 and finished treatment in following July. By January 2021 I had a few symptoms cropping up and had a scan and apparently I’m 1mm away from more treatment but that was, as I said, 18 months ago.
My consultant and MacMillan nurse didn’t give me the impression that this was not abnormal as I’m aware that slow growing can potentially become fast growing.
I don’t know if the question is not too dissimilar to, “how long is a piece of string?” but, has anyone had experience to how much time generally elapses between treatments? As we all probably know, the nature of our disease is that is gets shrunk and grows again, and I’m more than happy to just get on with life, but I can’t help wondering.
Hi again Jules Jules3rdDan
Like many types of NHLs Relapse is always on the cards and Mantle Cell Lymphoma is one of these types but there are lots of levels of treatment when required. But as you are experiencing, there are challenges living with a reactive Lymphatic System. So there is a very fine line between the signs of a relapse and what our Lymphatic System does day in day out with the addition of having a sleeping NHL.
The time between treatment and a relapse is indeed a 'how long is a piece of string' question and honestly there is no answer. I have a completely different type of NHL, diagnosed in 1999 and for the first 16 odd years I only ever had periods of remission that lasted 6 - 9 months before having to go back onto the treatments........ but the developments in treatments stopped this in its tracks and I now have been in remission since Set 2016.
It's all about learning to 'live' along with our cancer but not letting it define us, more we need to define how we live and put our cancer in a place that it's not continually staring us in the eyes.
If it was not for coming on here and other support Lymphoma platformes to help out...... my Lymphoma would be far less 'in my mind'
Lymphoma Action do have a number of Support Platforms where you can actually 'talk' with others getting and giving support.
Always around to chat ((hugs))
