update and query

[Joy]

Hi brave ones, Just wanted to come to you with an tiny update and a question to anyone on Herceptin dm 1. I checked in with blood work yesterday and It looks like my CEA has come down a lot and my CA2729 is stablizing. My AST/ALT have dropped and are stablibizing, but the Alkphos is still high. I have had 2 cycles of the drug and will have the third either next week or the week after (starting to lose my mind with all of the appointments). I have my first CT this morning, so maybe I am pre-testal, I don't know. Does it seem as though the drug is working? I guess I had naive higher hopes for better blood results. The NP reminded me that you have to stop the boat all the way before you can put it in reverse. So I am trying to remain hopeful. I am grateful for the good things in the reports, but just, obviously want some regression of disease.

I am leaving today with Luca to go see my parents in Pagosa Springs, CO and my kids are going to Illinois with their dad for a week to see their grandparents. I have been looking forward to this trip for months and now especially as my dad has been very ill the last 2 months. He seems to be on the mend, but doesn't sound right when I talk to him on the phone. It is the big meeting of the parents and the boyfriend and time for Luca and I to be togther a lot. I'd like to not worry about this dumb disease while I am trying to focus on my parents and enjoy time with the most wonderful man I have ever known. But I keep getting this fear that after all these years time is really running out. Soooo, I guess I could use any encouragement as well as personal experience reminders on this drug.

Otherwise I have been having fun with kids and friends and boyfriend. I went to the first Mile High Music Festival this last weekend with my best friend and Luca and I am happy to say that at 40 we can still hang! It was 100 degrees and no shade and we saw great bands (Steve Winwood, Spoon, Tom Petty, Martin Sexton, Flobots, Rodriego y Gabriella and Dave Mattews) and danced and sang and laughed and ran through a ginormous sprinkler and saw a lot of bad tattoos. My feet and back were a little sore after it all, but I feel fully recovered now. Having times like that is so precious and reminds me of how great life is and how much I want it to continue, but I am feeling that nagging, stupid, unfair uncertainty.

I love you guys and want you to know that the information shared here on the progress being made in cancer treatment is such a lifeline and I am so very thankful for all of you and your wisdom, courage and brains!!!!

[chrisy]

Joy, that's a new one! I'll have to add that to my repertoire. And I warned you about the "schedule"!

Ok, so the CANCER markers have dropped and/or stabilized. To me, that would sound like a good indicator since I think you've always said these markers are useful for you. How do you FEEL? other than pre-testal?

Forget about the liver enzymes. Everyone processes this drug differently, and the LFT's are more likely an indicator of the drug clearing than anything to do with the cancer.

You may remember, my LFT's have been elevated significantly since beginning this trial, the one we've been tracking most is AST, but they are all equally out of whack. My AST has been living at between 100 and 150 since February - and is "stable" at that level. All due to the drug.

Although I have to share a possible remedy...
I found a 7 day liver detox juice diet in a juicing book. The key elements are beet juice, "green juice", a green soup (made from celery, zucchini, green beans, parsley and butter), and carrot salad. I tried this for a week or so in April and my AST went as "low" as 97. Then the past few weeks I've been on it very religiously and my AST went from 97 on infusion day to 148 on day 8, 112 on day15, and (TA DA) 76 on day 21.

This time, we added another element, my hubby grabbed my butt and pushed it down while shouting "AST DOWN AST DOWN" - that must have done the trick. I also went WILD and last week made "cream of green" soup! Or maybe it was the weekend of eating nothing but chips, carrot cake and carrot salad at my nieces birthday party.

I'm on a 28 day cycle (because of my bad AST) and so this week I'll try to stick with it and see what happens. If it works again, I'm going to call it my AST-kicking diet!

Anyway, enjoy your scanxiety - and your vacation! It sounds great. Let us know about your scans, I was getting ready to check in with you on that because I figured it was about that time.

Much love
Chris

[lilyecuadorian]

I think is a good news ...so let's celebrate with joy and JOY !!!!

[kk1]

Joy and Chrisy;

The two of you a too much, you both made me really laugh. I was pre-testal all last week and now I am post-testal and needed a laugh tonight. Thanks!

Joy enjoy your weekend...It really does sound like things are heading in the right direction.

[Joan M]

Joy, It sounds like you're heading in the right direction with the trial, which is a good sign. Enjoy your trip with Luca and enjoy your time with your parenta. Joan