And here we go again

Reading my last post back before starting this one, so much has happened since then. But I’ll keep this one brief and cut straight to the chase.

I have not been quite right these past 2 weeks and as soon as I was weaned off the Prednisolone for the recent PCP incident I started developing fevers and feeling very weak again. I also had another 3 night stay in hospital over the Easter weekend due to an allergy/generally feeling rubbish. My doctor decided to send me for another PET scan, despite having an ‘all-clear’ scan just 6 weeks prior. His words were “it’s not unreasonable to take another look to make sure we’re not missing anything”.

The scan phonecall came through swiftly and I was booked in for Wednesday 19 April. The results were promised for Thursday in clinic (a world record speed!). That appointment came about soon enough and it wasn’t good news unfortunately. It’s a relapse. The bitch is back! Clear signs of lymphoma around the lungs, neck and stomach. Wow.

Before going to clinic appointments like these I always try to come up with scenarios. I guess this is my way of not getting a major shock. This was without a doubt one of the prime scenarios we’d considered, and in all honesty made the most sense given the recent blood counts. But such a change just 6 weeks after a totally clear scan? Surely not? But hey this is lymphoma and things change fast. I know that from previous. It still knocks you out the water.

Now then. This is the plan (at least they have one!): It’s another round of chemo that I haven’t heard of before called GEM-P and I start TODAY. It’s once a week on a Monday (Gemcitabine & Methylprednisolone) and on the 3rd week they add in Cisplatin. The 4th week you have off. Then repeat. I’ll be having 2 of these cycles then another scan. I know nothing more about the chemo but will update on how it goes here. Eventually (all things going to plan) I’ll be heading for the allogeneic stem cell transplant at the earliest opportunity.

We are absolutely gutted and worried for the future. I am under no illusions that Allo transplants are major procedures and they carry big risks. But we always knew this could happen: the statistics of the auto working permanently were given at just 50%. And it’s fairly obvious that my immune system seems incapable of beating this disease permanently. Hopefully someone elses can.

Failure is not an option!

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