NEW POOPY UPDATE to NEW update on chrisy...scanxiety replay on the horizon
 

UPDATED INFO ON REPLY #38. DEBBIE L YOU ARE RIGHT, I SHOULD HAVE POSTED A NEW THREAD!



Many many thanks for all the positive thoughts and good wishes. I read and reread all the posts and PM's and they really helped calm me down. Thank you, my friends!

I know a lot of people have been waiting to hear good news from the scan last week; and in honor of the recent Facebook IPO, I'll just say:

chrisy is in a relationship with a stupid tumor...and it's complicated!

Complication #1: The Pet/CT results were interesting, and confusing. On the CT side, the single lesion in my liver was increased in size - or maybe only slightly depending on who was measuring it. The increase in size was not enough to meet the RECIST criteria proving progression. The PET part showed greatly increased metabolic activity with SUV nearly doubling in the lesion and a couple of nodes.

The "it's complicated" part is interpreting the results. Are these changes reflecting a) progression, b) resolution of having bled into the tumor and surrounding tissue during the biopsy or c) possible necrosis and/or "flare" caused by death of the cancer?

So, the scan indicates that the new drug ISN'T working, or that it IS working. Sheesh!

Complication #2 - the ECHO, which showed my LVEF dropping a significant % although still in the normal range. However, a different tech did it and in the report conclusions it says the change is likely due to difference in technique. I think the new LVEF number is bogus and that things haven't really changed significantly.

I love to have multiple high profile clinicians and researchers exchanging emails all night and having meetings all morning about me because, after all, I AM the center of the universe (hah!).

In the end, the recommendation was to do one more cycle of treatment, redo scans in another few weeks and then hopefully the picture will be more clear. Should this not be the drug/dose for me, a couple of plan B's are under consideration.

The most important "good" news is that things aren't going wild all over the place; still the same dumb tumor only (maybe) bigger and pissed off. And my oncologist feels we will be able to find something to shrink it then zap it with RFA. All of this helped me regain hope (believe it or not) and also got me pissed off and into full #$%^ cancer mode!

So stay tuned, sorry but we need another 3-4 weeks of those good vibes!!!!!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Good, good, good vibrations from your friend on the East Coast. I am hoping for pissed off and dying. Oh yeah.

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Well, Chrisy, I don't think the tumor has long. Knowing you, your team and history, you'll come up with the right plan of action. Glad this is behind you, and you can move ahead in that glorious pissy mode that always gets the job done. Thinking of you always,
Karen

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Well, since it is unclear if the new drug is working or not, let's all get on the IS Train!!!! Same with the ECHO. We will go with the difference in techniques until told otherwise. I recently had a big old increase in tumor markers only to find out they were using a different measurement.
Keep the faith.

Re: NEW update on chrisy...scanxiety replay on the horizon
 

You have them.
k

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Wow !! Things can get pretty confusing at times.
I agree with your doc about doing one more treatment and then trying to do the same scan. Perhaps your doc can get a different radiologist and a different technician to work with you the next time you do these tests. Unfortunately the ability of the radiologists and technicians and the condition of the machines do play a part in the diagnosis and in the results. After all these machines are operated by human beings who have the same ups and downs of life that we have. Maybe the radiologist who read the films was having a stressful day. Machines have their own issues and sometimes don't work so well. Maybe your body was doing stuff they never saw before. Our bodies are individuals after all !!
In any case hang in there and keep going as you have always done. The next scan date will be here before you know it.
Take good care of yourself and enjoy life as you wait for the next scan.

Re: NEW update on chrisy...scanxiety replay on the horizon
 

I agree with your doctor. I was the first HER2 member to receive TDM-1, but it was delayed several months from around Feb. to Sept. The trial had closed and I needed to wait for another to open. I couldn't have any treatment during those months. The bone mets were growing in my hip, and I was in significant pain. So, Christy, the reason I did not qualify for the first trial was because the machine was malfunctioning and gave an incorrect muga score that was too low. I also had that to worry about until I learned the truth several months later.

I feel that all will be well with you again soon, and you will reach NED!!!
Best,
Barbara

Re: NEW update on chrisy...scanxiety replay on the horizon
 

I vote for FLARE - cells taking it where it counts!

As Barbara and Elaine remind us, machines and new techs are factors in inaccurate results.

Can they give you another MUGA, or do you have to wait?

Re: NEW update on chrisy...scanxiety replay on the horizon
 

I just got a message that they are going to redo the ECHO tomorrow....gotta hurry up and go workout!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Go get'em Chrisy! Glad you are in major pissed off mode!

Sending good vibrations from the Great White North to you -

xoxo
all the best
caya

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Go workout!! That always puts me in the conquering mood! Bring it, and you'll be ready. Positive thoughts and positive vibes headed your way. Janet

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chrissy,

Well, whether you meant to crack me up or not, you did! That was funny stuff and I love that you and your tumor are temperamental and pissed off! I am hopeful that things are happening to that tumor and it is dying a slow, but certain death.

As for your echo, I had several weird echo episodes depending it seemed on who was doing them. I am believing yours will be fine tomorrow.

And you ARE the center of our universe..... ;)

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Yay Chrisy,

So glad you are feeling ready to fight...that's the spirit! Glad you will have another heart function test---hope this one is better. Your onc sounds very encouraging, and on top of things. Praying for great results from your repeat scans.

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Vibes on the move!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chrisy,
Your energy alone should scare that tumor - Let alone you are pissed off!!! As usually you will go get em.
Sending you strong vibes.

Warmly,
jean

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chrisy,
I am glad that the pesky tumor is going to get hit with another round of the new drug combo. Wouldn't want to toss out a potentially winning combination due to technical and human limitations of scanning processes.

But then...easy for me to say...the hurry up...no wait....hmmm??? mode certainly is stressful.

I am glad that those fancy pants Drs understand that you are the center of the universe. You will have to give us a class on how your coached them on this fact.

Here's to another powerful cocktail...cheers....Lori

Re: NEW update on chrisy...scanxiety replay on the horizon
 

An endless supply of good vibes coming your way. Your resilience, as always, is inspirational and amazing!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Well, Chris, you always have been a trail blazer! I'm believin' for the best possible outcome! Wish you could work out for me! ma

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Lol pink!

But tumors don't deserve names, I think,