First, the good news. On Monday my liver enzymes had fallen to the acceptable range and I went back on LDK378 at 400mg. As long as I am on this particular therapy, I will stay away from alcohol, levaquin and NSAID’s (advil had been my anti inflammatory of choice). I have been eating lots of liver loving foods (beets, beets and more beets) as well as a daily dose of prunes and bran: my friend Mateo suggested All Bran Buds, which I am happy to say are highly effective.
For the time being, ice cream has been added to my diet, and I have already gained back four of the pounds I lost. Happily, my wheezing is much improved and my energy is back in spades.
Perhaps best of all, my spirits have risen accordingly; I am back in fighting mode.
Thanks Carol Ann!
I love beets and ice cream ( though not together) so let’s get together for a beet lunch and ice cream for dessert! Soon it will be Blueberry picking time and I plan on picking a few gallons for you!
Amy, it’s a deal (our date) and the blueberries beckon as well. I miss the berry dispensary in our back yard on Blueberry Hill (blackberries, raspberries, blueberries…mmmm….)
Excellent news! So glad to hear that your wheezing is better; LDK is clearly the ticket to ride. And have you tried roasted golden beets with a little garlic and olive oil?
Having been a butter fan my whole life, it is only of late that I have come to appreciate the good, grassy taste of a nice (and perhaps young?) olive oil. Garlic is a perennial favorite (and a sulphurous compound, supposedly quite good for liver health), so I will give this yummy sounding combo a try. Thank you Joan!
Wonderful to hear your news and to “get” your elevated spirits.Have you tried Snickers ice cream? Love to you, Cathe
Cathe, I’ve not, but I could (Snicker’s ice cream)–twas my favorite candy bar in my youth…
Love hearing this news!
What wondeful news!!
Cheryl, I am most relieved by it.
So happy to see this update and to see that you are back in fighting mode, Linnea! All our best-
Thanks Jamie–hope you are moving closer to what is next for Kurt.
So glad you’re back on LDK! Also great to hear you are back in fighting mode! Reminded me of this line from Lance Armstrong’s book when he said: “Cancer picked the wrong guy… When it looked around for a body to hang out in, it made a big mistake when it chose mine. BIG mistake.”
DK–when I was first diagnosed I read ‘It’s Not About The Bike’ and took to saying (generally not aloud), “I am Lance Armstrong”. Lance had the same chemo I did (cisplatin) and I felt a real affinity as I crawled on my exercise bike in between infusions. Some day I would like to shake his hand and share my little story…
So happy for you!!!! Keep going, keep fighting!!! You are strong and you deserve to win this battle!!! Thinking of you everyday!!!! Love
Babette, you are so good to stay here cheering me on–it means much to me.
I just KNEW the ice cream would do the trick! Personal experience (heehee). So glad to hear your spirits are up!!! Let’s keep ’em there!!! xoxo me
Yes, we have had a fair share of ice cream in our days, have we not. Now, if only I could put wine back in the mix, I would return to voluptuousity in no time.
So glad to hear you are feeling much better and back on LDK, Linnea! Have you tried the cold beets & yogurt soup which is great in the summer? The recipe is easily found online. Love, Yuki
Yuki, I looked up a recipe immediately (several variations–all yummy sounding). Thanks for the tip and stay well!
Thinking about your great spirit everyday since I met you at the 100. I’m inspired by you and everyone I met at MGH.
ps the mascara is by Blinc. Comes off with water, not tears!
Chris, thank you; it was quite a night. And we certainly met ‘nice’ in front of the mirror in the bathroom. I will look for Blinc, a must have for emotional events!!
Sending you Big Love, Deb
Thanks Deb–right back at you,
hi my son Jared, is a year into ALK+ NSCLC–radiation, crizotinib, chemo, and now LDK 378 trial starting next week. I just read your great writing and story here and hope you are winning. It has been 4 months since last post on here. Are things still going good for you? Scott
Scott, perhaps you found my blog by googling LDK378 and it wasn’t clear that there were later posts. So, short answer, yes, I am still posting and actually still on LDK, for at least a little bit longer. It sounds as if your son has had quite a few treatments to contend with–I hope LDK378 will prove successful for him. Best of luck (and if you go back to my blog, you can scroll through the calendar to see posts).