liver results

[Al]

Linda got her ultra-sound results today, "no progression of disease since last ultra-sound", which was end of last May.
Her liver function has again improved so all are in the normal range, except for gamma GT which was 44. It dropped from 52 last week and 43 = normal. She is on Navelbine + herceptine, has shown remarkable response (an improved liver function result every week since she jaundiced last april), except this bit about "no progression of disease" bit upsets me. If there is no progression, then how will she ever get to NED or am I missing something? Should we be adding a platinum based chemo to the regime? What is the US gold standard for liver mets after original AC&T? I realize we should be happy but this news always seems to have a double edge.
Love to all,
Al & Linda

[judiek]

Al,

I'm sorry that you didn't get the results you wanted today. I fear that I'm not going to get a remission on my tx plan (been on it now for 6 months) I do undertand how you feel, but I guess we have to be thankful that the disease didn't progress. I have never heard of Gamma GT for a liver enzyme test...what is that. My doctor has been watching my AST which is 16 (normal) and my ALT which is 52 (high). My best to you and linda and I will keep you in my prayers.

Warmly,

Judie

History

Discovered lump Sept. 2002 (mammo didn't pick it up after I found it)
Dx Oct 2002-just turned 41
IDC and pagets disease, Stage 2b, grade 3/3, nottingham scale 9/9, very aggressive
3cm, lumpectomy, clean margins
er/pr positive, her2 neg,2/25 nodes with cancer
Nov 2002-March 2003 -FEC (Flourorical, Epirubicin, Cytoxen)
March 2003 started tamoxifen
May 2003 finished rads (33 tx)
June 2003 ct/pet scan-clean
Did 3 month check ups/lab work
Dec 2003 complete hysterectomy
Jan 2004 extensive mets to both lungs and liver/labs normal
Jan 2004Stopped tamoxifen
Feb to Current- clinical trial of avastin and taxol
Apr 2004-CT -significant shrinkage on all tumors/pleural effusion gone
June 2004-CT -all liver lesions decreased in size/ lung mets gone.
July 12th-CEA is 1 (0-3 normal)was 23 in Feb/ CA 27.29 is 25.8 (0-38 normal)was 66.1 in Feb

[Jerri]

Al,

I am not familiar with your wife's case. I had radio-frequency ablation to a stuborn liver tumor in November of 2001. Although I have had other metastasis, my liver has remained clear. I was wondering if RFA would be of any help to you.

Jerri

[Lolly]

Al and Linda,
I'm not an expert on this by any means, but the fact the there's been no disease progression is very good, and while I know you want the tumors to show shrinkage it may just take more time. Some seem to respond more quickly to chemo than others, but there is a lot to be encouraged by given the normalizing liver function. It may well be that the tumors ARE shrinking and what the docs are seeing is a smaller tumor surronded by dead and dying tissue, so stay strong.

Love, Lolly

[Steph N]

Hi Al -
I am with you - I would want to know more about that "no progression ..." statement. Does this mean that the tumor is the still same size as before??
Liver functions can be normalized and this will happen with some control of the situation, but that would NOT be good enough for me. And was NOT something my med onc wanted for my and my extensive liver mets. We hit them hard with 2 drugs plus Herceptin. In 4 weeks there was substantial shrinkage of one of the large tumors and some small ones already disappearing.
My onc and I were going to play hardball and give me a fighting chance - not just spend my energy and time having a go at it with not enough "fire power."
That fact that she is stable is good, but add another drug if needed to really make some progress. Perhaps her onc felt she was not strong enough initially to withstand a stronger regimen, but that MUST be carefully addressed if the tumor is not shrinking with the current treatment.
Also, ask for a PET scan to determine what is tumor and what is scars. That will be your best way to really know what is happening.