I was supposed to start chemo and radiation concurrently this week. Last week during PET scan they found that my spleen showed up "HOT" but was unrelated to the cancer and no cancer spread other than the one lymph node already involved.
The hot spleen but the kabosh on starting chemo monday and had to take a bunch of tests. Today i went for results and while most of the tests came back negative for anything that would clearly upset the spleen one test a flow cytometry test showed a teensy abnormality that is not in keeping with all other results. My oncologist spoke to like 10 radiologists and other docs trying to get an idea of what could be happening since really everything technically looks great. They have no explanation for the hot spleen. But it DOES mean no chemo til they know for sure since the chemo could likely cause more harm than good. She is putting in a referral to the Mayo Clinic or Shands hospital to see if they can figure out what is wrong.
Meanwhile, it looks as tho i WILL MAYBE HOPEFULLY at least start radiation on Thursday tho not having chemo concurrently lowers my chances for a positive result.
It was an anvil falling from the sky kind of day.
Trying to remain positive,
Stormeey
Hi again ,
I’m sorry that you’re not much further forward in finding out the issue with your spleen, it’s obviously proving a bit of a mystery with your Dr’s although it sounds as though they’re being cautious while they continue to get advice on what may be causing this red flag!
You’re obviously in the US, here in the UK the chemo side of this treatment plan is on the most part delivered orally with Capecitabine, the odd occasion some still receive it through a port intravenously weeks 1 & 5 but the hospitals here that do it that way seem few & far between. We’ve had a couple of people on the forum that have reacted badly when they’ve begun chemo & it’s been stopped, they have continued to receive radiotherapy on its own with successful end results. My oncologist explained to me that the radiotherapy is the main source of treatment for AC so try not to worry too much about the chemo side of things.
I hope they manage to get you some answers very soon & your treatment can get underway one way or another.
Try & stay positive.
Nicola
Hi again ,
Yes even on the oral chemo you still have the Mitomycin infusion usually on day 1 of treatment.
Unfortunately there’s a lot of people here also that like yourself go misdiagnosed for some time & are therefore staged further on!… It’s also perfectly normal to feel the way that you do & you’re doing the best thing in trying to distract yourself I remember doing lots of different things to keep me busy in the early days because like you say your brain tends to run away with you. I had myself more or less dead & buried after my diagnosis!!
We’re always here for support & as you get into treatment any hints or tips we can offer to help. It doesn’t matter that we’re so far apart there’ll always be a virtual hug on offer here. This forum was & still is an invaluable resource for me & the encouragement it offered me especially in the beginning of all this is something I’ll be forever grateful for.
Nicola
