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
Hannah in CancerLand 
Hey Hannah,
I’ve been thinking about all four of you this summer… and praying for some summer peace and renewal.
I’m sorry to see that you’re not on the trial any longer. The ‘inevitability” of change, as you say in the post…Thanks for so clearly naming that — and how it lands in your life.
I’m on vacation most of the month…Maine mostly…which feeds my soul. But I’m looking forward to re-booting our parents group in early September. And I’m hoping you and I can catch up with some one-to-one time too.
Whatever and Whoever God is…I have no question She is hovering near you, and Andrew, and Mattias, and Clara tonight. With grace upon grace.
Dave GJ
Sent from my iPhone
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you continue to impress me with how eloquent and understandable you make all of this while managing it all plus your family and so much more! Sending hugs and positive vibes. Always around if you need anything!
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Sending you all the love, Hannah. A great summer with your family is a wonderful thing. Xo
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Dearest Hannah, Damn. I’m so sorry that the clinical trial med that you felt better on didn’t do a good enough job at stopping the growth of the damned LMD. Such a difficult balancing act you are going through – finding treatments strong enough to kill the damned cancer, while gentle enough not to squelch your natural energy and joie de vivre. FYI, you inspire me daily. I love your whole family. I hope Clara can come visit again..what a delight she is….just like you :). Take good care, and I’m going to say my prayers that you feel alright on the Carboplatin. Love to you all and know we (kitties included) stand at the ready to do anything that would be nice for your family. Much love, Ruth et al
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So saddened to read about this progression, and wish this trial would have afforded you more time on it (especially given no new side effects). Glad to hear you are still able to enjoy the time with your family before school starts back up, and praying for new med success and that you feel just as good as you do now. ❤ Sending you lots of love!
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