Hi Everyone,
A health update for you.
I was really nervous for this scan because there were certain feelings and signs in my body that hard as I tried to cast off as other things, felt a lot to me like cancer on the move. I had a mini panic attack in the elevator up to my doctor’s office and as usual peed my maxi-pad filled underwear. (I know, I know – TMI)
Just to review, at recurrence in March of 2017 I had 5 tumors. Chemo shrunk them all and recently we could only see 2 of them. I went off chemo in mid May to do some targeted radiation called SBRT on those 2 visible tumors. I completed that in early July.
Monday’s radiologist read noted 4 new tumors and one existing one that got ever so slightly bigger. Hmmm. Not what I expected and doesn’t entirely add up to me. I’m not happy with the read because it’s not clear if these new tumors are brand new or at least some of them are the ones we saw back in March of 2017. To me that’s important to figure out. In addition, what’s the status of the 2 tumors that got radiated? One disappeared and one grew slightly? Again, more eyes are needed on this to get a clearer picture.
My doctor’s first words to me were I was not to worry and we’ve got options. Ok, blood pressure went down some. He continues to maintain that my cancer is not aggressive and my case is interesting. Regardless of the details it’s clear I need to be back on systemic therapy. I will head back to chemo next week, it’s looking like Tuesday is my start day.
I have two mutations that are targetable in my cancer meaning there are drugs on the market now that target those mutations. None of them so far are anything close to a magic bullet. My two mutations are IDH1 and ARID1A in case that means anything to you. There is a parb inhibitor trial at MD Anderson that targets the ARID1A mutation and that may be something I try but it doesn’t seem to keep cancer at bay for very long (3 months) so that’s a lot of back and forth to Houston and hassle for that kind of gain. Looking down the pipeline is using a parp inhibitor with an immunotherapy drug. There are already trials for this with good results for ovarian cancer, as in full remission. Many people with ovarian also have the ARID1A mutation if I am to understand correctly. (I am not a doctor, I just play one on TV).
Anyway, all this is to say, it was a blow for sure. Not what I had hoped. Now I have a lot of homework to do as far as what to do aside from chemo which has been an amazing place holder for my cancer but isn’t curative.
I am in good spirits today. I am coping. I am going to go back to some of my early cancer disciplines and try to support my body’s immune system any way I know how.
You have given me such love and support with prayers and good wishes. Thank you. All the texts and emails were so appreciated.
This morning after I dropped the kids off at school I stopped by a coffee spot (that I never go to) to get a little coffee treat before taking Mikey to the dog park. To my total surprise and delight in walked my good friend Greg Grant (husband of Carolyn) and he was meeting my fellow cancer king and 6 year pancreatic cancer all star Martin. I Love these expats (Greg is South African and Martin is British) because these guys have the biggest, boldest hearts. Martin and Greg worked together long ago and Greg introduced me to Martin when I was very first diagnosed. Angel moment for me.
Onward and upward,
xoxo Hills