To Al & Linda - How is Linda?

[IRENE FROM TAMPA]

Hi Folks -

I kind of lost track over the holiday's of how Linda is doing. First I hope you were both able to have a good one. I know receiving news of progression does not help.

I believe in your last post she was going for a second opinion on what medication to resume. Did she begin on anything other then the Xeloda? I was surprised to hear that they put her back on Xeloda if her tumor had progressed. Have they considered ABRAXANE? I have been on this relatively newly approved chemo since July and I was just rescanned. Since I began in July at the size of 4.2 x 2.2 cm it has decreased to 2.1 x 0.7 cm.
My tumor markers have dropped from :
CEA - 54.8 in June to 2.2 now
15-3- 67 in June to 47 now
and this was after giving me the month of December off.

I just saw my onc. last week and she was very pleased. I of course, wanted everything to be gone. I started back up this last Friday. This has been a very tolerable chemo for me and my CBC has been great. I have taken alot of chemo's and had a stem cell replacement so we were concerned with yet another chemo, but so far so good. I just hope my tumor does not become ammuned to this chemo and stop working.

This drug is a taxane and I know there are some people who can not take taxane's but it might be worth checking into.

Please keep me posted as to Linda's progress and what she chemo she decided on.And please forgive me if I have repeated myself in all this info. I sometime lose track of who I have told what to. Just want to pass on in hopes it might be of help to someone else.

Take care -

[al from Canada]

Dear Irene,
Thanks for asking.
Linda has an appointment on the 25th with Steph's doctor in Seattle. The reason Linda originally went off xeloda was to see if she had stable disease, which she didn't. The reason she went back on it was two fold, she achieved an excellent response in the past and all though it is considered a chemo, it is not systemic. She has completed her first full cycle of xeloda a few days ago and is currently on neupogen support. You suggestion about abraxane is a good one except her marrow is so weak and comprimised that we want to stay away from systemic chemo unless there are no other options. I am not a great fan of taxanes, albumin based or otherwise, because I think that was what depressed her marrow. That being said, I'm very glad it works for you as it is a very good drug for most people.

Linda has her next MUGA on this Tuesday, her onc appointment with herceptin on Wednesday morning and a brain MRI on Wednesday afternoon. It is going to be a busy week but we want as much relevant information available for the Seattle people as possible. I'm still very concerned about Linda's health because she still sleeps a lot and sometimes is sick to her stomach, which I think is the liver mets. As I mentioned in an earlier post, our goal is to get Linda started on avastin, the main issue right now is cost, which we are working on. I would also like to see her on another HER drug like lapatinib or pertuzumab, as I can see Linda getting even sicker with heavy chemos; however, I can see her requiring some if she doesn't improve more very soon.

Glad to hear you are doing alright, and I know that this is a tremenous disappointment and struggle for you especially after the liver resection. I think that most of the people in this support group are stuggling in some manner but.....you know what they say, misery loves company....... and the company we keep her is second to none.

Take care,
Al

[Sandy H]

Al, please keep us updated. I know I have not posted much lately but have kepted you both in my prayers. I am glad that Irene posted to you. I am very busy this week as well. Had muga on Friday after Herceptin. Tomorrow is cat/bone scan day my 6 months follow up. My oncologist scans me every 6 months being IBC. Wishing you both well. hugs, Sandy

[StephN]

To everyone - looks like this is a heavy week for a lot of us for our followups.
I have my brain MRI on Tuesday as well. But have high hopes that it will be fine based on CEA still being at .9 at last check.

Irene - I am glad to hear that you are doing that well on the Abraxane and you continue to enjoy life in the Florida sunshine! The more we hear of some good results with the new drugs the better we feel about mentioning them to others in need of additional therapy against their cancer.
As has been said before - we are all helping to write new chapters in the fight against our common disease.

Sandy - thanks for letting know you have the scans this week. Extra prayers coming your way!

If there is ONE thing I came away from San Antonio with - it is that there are literally thousands of researchers working on various ways to get at these stubborn cancer cells and kill/shut them down.
The knowledge base is increasing at a rapid rate and people like Al are right in there peddling as hard as possible to catch the ideas that are coming through.
WHEW!

[suzan w]

I also live in the Seattle area (Poulsbo, on the Kitsap Peninsula) where do you go for your treatment???

[StephN]

I live in a suburb north of Seattle and go to Seattle Cancer Care Alliance at the Fred Hutchinson complex by Lake Union.
Do you come across to the city sometimes??