Latest CT Scan Results while on clinical trial

[VaMoonRise]

Hi Everyone,

I hope you are all doing well. I wanted to share with you the latest results of my CT scan.

As most of you already know I have been on the clinical trial consisting of Herceptin, Taxol, Lapatinib (Tykerb) and Zometa once a month since Dec. 2005 for the treatment of extensive liver mets and bone mets. Every scan I have done since starting treatment showed vast improvement in my liver mets. The one I had done eight weeks ago showed that the smallest of tumors were no longer evident and that the largest two were still shrinking. My latest scan that I just had done on June 28 makes me a little disappointed and fearful that I may be coming to a stand still.

Everything came back stable, no changes from the last scan. My oncologist said this is good news. I was slightly disappointed as I had hoped it would show more tumor shrinkage in my liver. My oncologist said this could mean that there is no cancer activity going on in the liver and that what the CT scan could be showing is scar tissue. She said that if my next few CT scans show the same thing that they will then do a PET scan to confirm that it is just scar tissue showing up and if this is the case it would mean that I am now NED (no evidence of disease). That news really cheered me up and I am so hopeful that this is what is going on. I will be very eager to have the results of my next few CT scans. I have them every eight weeks so the waiting is going to be brutal. If nothing else I am sure getting a great lesson in patience, lol.

I have a question, what happens if you end up with a liver full of scar tissue, how much does this effect liver function and has anyone ever ended up with so much scar tissue that a liver transplant was needed?

I love you all and thanks again for all of your support and prayers. I will keep you all posted on my progress.

Love, Hugs & Prayers,
Nicola

[Cathya]

Nicola;

I remember when you started on your trial and am so happy to hear things are going well. It is my understanding that the liver regenerates.....people having transplants for instance sometimes receive only a portion of a new liver. Thusly you would need to have a tremendous amount of scar tissue for this to be a problem. Are you having a problem now with liver function? What does your bloodwork show? It is great that you are keeping us informed of your progress. Enjoy!!!

Cathy

[Bev]

Can't help with the transplant question. Just hoping all will be fine. When I'm worried and waiting, I just tell myself one day at a time. You can't worry about something that may not be. Easily said but not done. It's a good question for your docs. Keep us posted on how it goes. BB

[Joe]

Nicola,

Ginger Empey who was dx'ed 11 years ago and was the first person enrolled in the phase III clinical trial of Herceptin had mets to the liver. She is in complete remission today and her scans STILL show spots on her liver. Her stories:

http://www.her2support.org/ginger.html

and

http://www.her2support.org/story3.htm

Ginger is a very down to earth person and is very approachable. Call her.

Regards
Joe

[Kim in CA]

Dear Nicola,

I also had extensive liver mets back in 2001. After 8+ months of Taxotere and Herceptin, scans still showed a suspicious spot on the left lobe of my liver. I consulted a surgeon at UCSF and he basicly said that the only way to be sure that the cancer was gone was to do the surgery. They ended up removing the entire left lobe of my liver because it was so shriveled up with scar tissue! The pathology reports didn't find any cancer.

This November will be 4 years since my surgery and I am doing just fine with only the right lobe of my liver. I even still have my glass of red wine most nights! I'll bet with the potent combo of drugs that you are on, those spots are probably just necrosis.

Take Care, Kim in CA

[chrisy]

Dear Nicola,

I was dx with extensive liver mets in 2004 to both lobes - left lobe was virtually all cancer. My scans showed:
at 2 months (11/04): 50% reduction in all lesions
at 4 months: some lesions reduced, but the left lobe "unchanged". Onc was happy with the results, but I felt very discouraged, as you do - I wanted it ALL gone, and I mean YESTERDAY!
at 6 months, after last chemo: smaller mets gone, left lobe lesion smaller and less prominent. Onc happy, felt it was necrosis/scar tissue. Me still discouraged
at 9 months (7/05): tiny "area of interest" in right lobe stable, REST OF LIVER CLEAR!
next 3 CT scans (11/05),(3/06),(7/06) all stable, that doggone <5mm "whatever" is still there...
Onc still happy, I've tried to learn that when my oncologist is happy, I should be happy!

It is very likely that what you are seeing is scar or necrosis which will continue to clear. The liver does regenerate. Keep the faith!

[chrisy]

Dear Nicola,
One more thing...
Liver transplant question - I asked my onc this in the beginning, before treatment. Not advisable because in order to prevent rejection they have to suppress the immune system which could be very bad news for your body trying to fight cancer!
So it is truly fortunate that the liver has regenerative abilities...I guess it's no accident that such an important organ can do this:)

[VaMoonRise]

Thank you so much everyone for your encouraging and informative responses. I love this site to pieces, you guys are the greatest!

I feel much better after reading your posts and feel like I don't need to worry as much about my next scans.

My numbers have been great, my last tumor markers were at 16 which I have been told is normal range and my liver function is good too as are my blood counts most weeks.

I will be sure to keep you all posted on my progress. Thanks again everyone.

Love & Hugs,
Nicola