New here

Hi and welcome to this corner of the community. 

I am Mike and I help out around our various Lymphoma groups. I don’t have SMZL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

I can understand your feelings about ‘keeping going’. I have had over 23 years of treatment but ‘eventually’ the right combination of treatments were found and here I am living as good a life as any 67 year old can live and living “the dream.

For me it’s always been about my yes for life drowning out the noise that can say ‘give up’

Always around to chat ((hugs))

• Hi Mike, thx for making contact. My SMZL was stage 4 back in 2018, think I’ve dine well to go 4+ years. The treatment I’m on is oral chemo (cyclophosphamide), I’m on my 5th and final day of my second round of 6, not only do I have sickness, I have bad stomach/chest pains and I’ve wondered if having the treatment thro injection might be more suitable for me.  Have you any experience of other means!
• I do have gallstones and a reflux problem as well as a blood clot in my lung and somehow think they might be adding to the problem x

High again.

I think we all have to weigh up quality of life, dealing with the side effects and what I call post treatment ‘left overs’….. and simply living.

The link at the bottom of my posts will take you to my 23 years journey and you will see that I have some significant ‘left overs’……. but considering that in late 2013 I had been told I only a few years on the clock if the next plan did not work then I am happy……. This plan was the last available treatment but all these years on there are new treatments come on line for my rare type of NHL should I relapse.

I am fortunately, or unfortunately (depending on where you stand) a complete optimist so I will never look at the challenges ought weighing the positive ((hugs))