Scandemonium

chrisy · 10-09-2008, 05:41 PM

I ran the full marathon of PET/CT scan, labs, exam ECHO yesterday. Oh, and flu shot for dessert.

The PET/CT showed stable (yay!) on the liver and no new activity anywhere. The liver lesion is I guess still visible on the CT but is unchanged and continues to be no more metabolically active than the surrounding tissue. So I'm not completely sure what that means - is it maybe necrosis?

No results on the ECHO yet, but they did something weird - they did not do a full ECHO study - only the little bit they needed for the trial. I'm not too happy about that, especially if they charge me for a full study. I'll be watching them for that! If they're gonna charge me for the whole meal, I want the whole meal, I want the full plate including dessert. If they want to order (and charge) a la carte for what I get, I suppose that's ok...but I still like to get the whole report. It gives me more medical terms to stress over.

Hmm. Must be dinner time, all I can think about is food!

Sheila · 10-09-2008, 06:39 PM

Chrisy
YIPPPEEEEE on the good results on the PET/CT....sounds like this potion is working its magic for you...hope the Muga is perfect too....must be the season, I got my flu shot Monday...we will be so healthy in San Antonio! Keep kicking those mets!!!!!

hutchibk · 10-09-2008, 07:36 PM

I am liking the sound of your trial!

Rich66 · 10-09-2008, 08:32 PM

I vote for necrosis.

Becky · 10-09-2008, 08:44 PM

You just ran a sub 2 hr marathon - unheard of until today. Congratulations!!

Mary Anne in TX · 10-10-2008, 06:52 AM

What great news! Keep kicking those dastardly mets away! ma

caya · 10-10-2008, 09:54 AM

Congrats Chrisy - sounds like you are doing well.

all the best
caya

Ceesun · 10-10-2008, 12:22 PM

Bravo! Ceese

Joy · 10-10-2008, 02:50 PM

...and I use the term loosely

What did you end up eating after that? I am psyched that you are doing so well on the trial. I am voting for necrosis and a ticker that is just fine. You watch those bills though like the smart one you are. Thank you for the update!

runtolive · 10-10-2008, 03:14 PM

what are they saying about the spot .... would they consider a biopsy??? or surgery to remove it... u say its not metabolically active compared to surrounding tissues... but its still there..

with all you have been through... i would keep asking questions

run to live..

chrisy · 10-10-2008, 03:27 PM

At this point I intend to complete the trial, which would be another several months. The lesion that is visible is becoming "less clearly seen" which would be consistent with crumbling necrotic tissue. My first round with the liver mets it took several months for the CT scans to be completely clear.

I have already been considering the biopsy/excision or rfa route down the road a bit. At any rate, the DM1 for now seems to be a winning horse for me, and you do not get off a winning horse.

Scans are so frequent on this trial, as long as we continue to see stable and fading that is a good indicator. Because of the platelet action of the DM1, as well as the elevated liver enzymes I have related to treatment, even a biopsy is something that would need to be carefully considered.

StephN · 10-10-2008, 05:23 PM

I am so HAPPY for you!
When I had scans of my liver that had been full of spots, and there were 3 very small ones left, it was thought to be scar/dead tissue.

My body eventually cleared it out and there is nothing but healthy tissue seen for my liver.

There is another thing called a Hemangioma that a person can have in liver, lungs and maybe elsewhere. My last spot on liver was suspected as that, but also disappeared in due time.

The fact that the remaining spot does NOT "light up" makes me think this one is a goner and is nothing to worry about.

Heartfelt congratulations!

chrisy · 10-11-2008, 02:29 PM

Joy,
After the scan before the echo I went (on recommendation from my trial coordinator) to a lovely little espresso cafe. Turned out it was at least a half mile away - I should have expected that being the the trial coordinator is in training for an Iron Man triathlon.

They had really really good but expensive sandwiches. The sandwich was yummy. They also had a sign on the back of the espresso machine that said "all unattended children will be given an espresso and a free puppy" That was great for a laugh!

Barbara H. · 10-11-2008, 04:53 PM

Hi Chrisy
I'm so happy about your scan results. It is a normal side effect to have high liver enzymes and lower platelets from this drug. It also affects your potassium levels. Also, once you complete the trial you can stay on it if it is working. I am already into my second year. I think it is a great trial with few side effects, except that my nose seems to run more and I have a lot of nose bleeds. I've tried putting ointment up there, but it has not helped. At this point I am annoyed with the length of time I have to spend every week in the infusion room, and the number of scans I have to get. I heard last week that they are looking into decreasing the amount of scanning, but I don't know if or when it will happen.
Best wishes,
Barbara H.

Bill · 10-11-2008, 05:40 PM

Hey Chris! Sounds like great news again. I know you'll keep after them. (Hey, maybe after my move we can get together and do that hike you were talking about)

juanita · 10-11-2008, 06:50 PM

congratulations!!!!!

jones7676 · 10-11-2008, 09:01 PM

Glad to hear you're doing well.

harrie · 10-11-2008, 11:45 PM

Your news sounds good to me too! Yea!!

chrisy · 10-12-2008, 11:36 AM

OK Bill,

I'll start training now - with a few more trips to that espresso cafe with the free puppies!

runtolive · 10-13-2008, 12:38 PM

i would imagine genentech wants those scans performed so often just to make sure that the disease is not progressing. Its great to hear you are doing so well .. barb..

i see the trasdm1 has started enrolling for the tykerb failure patients. hopefully genentech gets their 100 patients enrolled soon.. and then we hear about how strong the results are..

run to live