Hello All! I am going to make this a farily short post as the news I have to share has me sad and disappointed and I am ready to take a break from thinking about it 24/7.

In June I had progression of the LMD in the base of my brain stem. Just a little, but enough to call it progression. The silver lining in that bit of progression is that my liver was looking really good and the improved liver and small amount of LMD progression was just what I needed to end Eribulin and qualify for that clinical trial I wanted to get on (Dato-base trial). I was SO hopeful that I would get many months on the Dato-DXd drug.

I had been feeling pretty well in many ways on the Dato-DXd drug and didn’t go into my scans last week with much worry. Unfortunately, the scans showed a different story. Damn. There has been significant progression of the LMD and now covers much of my frontal lobe area as well as the brain stem. I am not symptomatic in any new ways, I have quite a bit of energy, my GI issues have largely been under control, the neuropathy is much improved, and I’d even say my balance has improved. And if you look at my blood work I am also trending in the right direction.

So it’s with a heavy heart that I have to say I am no longer on the clinical trial. Only two doses in and things got much worse in my brain. I will start a new-to-me drug called Carboplatin (carbo) next week. Carbo is a fairly old drug in the chemo world, but it’s likely to have some power to cross the blood brain barrier. Once I get two doses out of the way we will scan again; in six weeks. Until then I’ll be hoping and praying that I remain feeling well and there will be no major side effects from this new medication.

I was on the Dato-DXd drug just long enough to really have a great summer with the family. I am so glad I felt well going out and doing a lot of what I love to do. Change is inevitable when living with this disease, so I’m trying to live it up as much as I can when I feel well.

Take Care my friends! XOXO