Mixed Scan results after 2 cycles of Ixempra -
 

I don't know if "happy" is a word that I can use to describe how I feel after receiving my "mixed" scan results, but I'm trying!

After 8 weeks on Ixempra/herceptin, the combo has successfully, significantly shrunk a bunch of the nodes in my belly that were strangling my kidneys & colon. There's even been complete resolution of a 4cm soft tissue met by my bellybutton.
Thats the good news.
The not so good news is the 2 spots in my liver didn't respond at all, 1 has even grown to 3cm x 7 cm, and a new spot has popped up.
WHAT? How is that possible...? So confusing.
Another confusing discovery is that the R lobe of my liver never regenerated after my resection in 2005. Can't believe I'm just realizing this now.
So the bottom line is I only have the L lobe of my liver, now with 3 tumors in it.
The response to Ixempra in my belly is truly GOOD NEWS. And I do feel better, look better, am better that I was when we started this combo 8 weeks ago.
It was the 1st time in 8 years with this disease that I could "feel" it. The discomfort of the tumors in my GI, not just being constipated, but just feeling and looking sick.
And that is better.
The plan now is to continue on Ixempra, hopefully cleaning up my belly nodes to NED and maybe it will finally kick in & knock those liver mets back?
I meet with my liver surgeon on Friday for some options, but obviously resection is out, since I only have 1 lobe.
Maybe something to zap them?

Additionally, I'm going to Indianna U next Tuesday to screen for a TDM1 Phase 1b trial. I missed the 1st enrollment group while, so I need to just get screened for the waiting list for the next group. Though they don't know when the next group will enroll - it's dependent on how this 1st group responsds.
OH TDM1 WHERE ARE YOU?
PLEASE HURRY!

The logistics of managing this disease are so hard right now. And I'm so frustrated and sad that my world and life has shrunk down to just treatment, spending so much time in bed because the Ixempra has been tough. I'd always been able to continue working while on treatment for these past 8 years, until now.
I'm not able to work or teach/run the studio, and beginning to forget what it was like to have balance in my life.
It's the monopoly of this disease over my life right now that has be depressed and intimidated.
I'm clinging to something I read on a card my friend sent to me, "Hope will find you".
Trying to be patient, but feeling so stuck right now.

I'm so grateful to have all of you here. And I've been so fortunate to have family that have put their lives on hold to come to stay with me these past 8 weeks.
I just hope and pray that life returns to some semblance of normalcy and balance for all of us soon.

Thanks for letting me vent everyone~

Jessica

Re: Mixed Scan results after 2 cycles of Ixempra -
 

Hi Jessica, Just want to tell you that there is a lot of good results in your post and the drugs are doing the job in some areas so that is good, right!! I am sure your onc will adjust/alter treatment to go after the liver problem so hang in there.... I do empathize with what you are feeling and saying. I left my teaching position @ one year and half early as I came to the realization that teaching middle school while in treatment and having a family life as well as "patient life" became too much to handle. I guess all of us do what we must as we fight this disease... keep the faith, help is on the way. Ceesun

Re: Mixed Scan results after 2 cycles of Ixempra -
 

Hi Jessica,

Praying that you to find the right combo to clear up the liver mets. TDM1 has had such good results, so getting in the trial will be great. Wishing you the very best.

hugs,
shobha

Re: Mixed Scan results after 2 cycles of Ixempra -
 

Adding a prayer for you that they find the right combination for you.

Re: Mixed Scan results after 2 cycles of Ixempra -
 

Jessica,
I don't remember, or maybe never knew what type of scan you were getting - was it a CT or Pet? It is confusing to see such mixed results. If the scan was a CT, is it possible the scan is showing necrotic tissue in the liver?

The slight increase in size and apparent "new" tumor in the liver is of course also disconcerting. Are these changes significant in size? As you know, the scans take pictures in "slices" and depending on the number of slices, small lesions can be missed entirely (or you can get a picture of a slightly different sized location).

Either way, it sounds like you and your team are on it; maybe the Ixempra is working better than you think. Or perhaps your surgeon will have some other ideas.

And you have it backwards, your family are the fortunate ones, that they have something so special and important (you) to wrap their love and support around.

Do not lose heart.

chris