Hi

Joy · 06-05-2007, 09:22 AM

Hello everyone, I hope you are all hanging in there okay. I'm really struggling with Sandy's passing. It just seemed so fast. I mean it wasn't long ago that she posted with her usual cheer despite the struggles and then it was over.

I was on a mini vacation in Estes Park with friends and had a great time, but that news was hard to come back to. I thought about her the whole time I was gone.

I am doing pretty well on xeloda/tykerb. This is my week off xeloda. I have not had many side effects; A little burning in the hands and feet, a little mouth soreness. I know that will increase as time goes on. I'm not sure if I have a rash exactly, but my skin feels drier, especially around my nose and mouth and under my eyes. I normally have pretty 'normal' skin. I think it might be the rash because it is so unusual for me to have the dry patches and very few things have really moisturized enough. I'll be curious to see if it is a passing thing. I just hope this is working.

I'm feeling a little down again and just so wish for the miracle.

Carolyns · 06-05-2007, 10:27 AM

Hi Joy,

I am glad that you took a mini vacation to Estes Park with your friends and that you had a good time. That is good medicine.

It has been very sad with Sandy's passing. We will all miss her smiling postings and words of encouragement...and just her radiant energy. I feel like we have all been really down about it...it is so hard.

I am glad to hear that you are doing well on the new treatment. I just got my first CA 15-3 report that has been down since going off of Gemzar.

History: Last year, 15 months ago, when I started at Stage 4 my 15-3 was at 200. Then after several treatments my lowest point was in Dec. 06 when CA 15-3 went to 12. Then I switched to Faslodex and continued with Herceptin and the markers started rising 10 points per month up to 59 last month in April. Scans were mostly good but had slight progression in bone mets. Switched to Herceptin and Tykerb May 9th. Now the results after 3 weeks of Herceptin / Tykerb markers down to 43 points. I figure things are going in the right direction and scans in 4 more weeks. My markers have always been extremely telling. So we keep a close watch. I have heard that others do not find the markers so reliable.

It was great to hear from you. Take care!

Carolyns

Lolly · 06-05-2007, 05:47 PM

Joy, I'm glad you got away for awhile, it's been a crazy time for you and you needed a break. Don't worry about anything, just let yourself relax knowing the meds are working!

<3 Lolly

Joe · 06-05-2007, 05:55 PM

Joy,

I've located some sources of financial assistance at ASCO. As soon as I get organized, I will email you some info. GSK will also offer you help:
http://www.tykerb.com/tykerbcares.html

We can expedite your application.

Regards
Joe

SoCalGal · 06-05-2007, 11:35 PM

Hi Joy,

It's good that you write how you are feeling...just putting it down is good for you and good for us all to read. It sounds like you are overwhelmed first with starting this regime, and also with the insurance problems.

I did not "know" Sandy but was tearful reading all the lovely postings about her. She meant so much to so many and that is what made her life meaningful. It's particularly hard to read of anyone on "our" site passing but from what I can gather she made her peace with the process.

Tonight is day 14 of xeloda, round 3 for me. I am looking forward to the week "off" although it usually is uneventful. I don't even know what event I would like. haha.

I saw my doctor today and he told me of a website for products for surgeons. He said they always have cracked, and dry hands so I'm passing along the info. The website for "Surgeons' Skin Secret" hand cream is www.jamarklabs.com. I have not had a major rash, but have breakouts of some pimples and dry skin around my thumb.

I am looking foward to more JOYful comedy...I don't like to be the only funny one online.

Try to stay present, breathe and have faith. Tomorrow is another day...~Flori

Joy · 06-06-2007, 08:24 AM

I appreciate your support. The skin around my nose is so cracked and peely and red, I look like Lisa Lubner. I will look into that link you posted.

Andi · 06-06-2007, 09:00 AM

Joy - my ocologist said as others have stated here, that the rash is an indication that the tykerb is working, so you can celebrate the fact you are getting the rash. I hope this combo really works for you, I will be praying for you.

SoCalGal · 06-06-2007, 09:51 AM

Hi Andi,
Just curious as to what treatment you are on. How long did you stay on TY/Xeloda? I am anxious to have a pet scan to see if it's working for me but my onc says to wait for the 3 month mark so it's a clear scan result. Of course, in Flori-cancerland there are no clear results for the past 11 years. Okay - gotta get offline and get my day on...

Andi · 06-06-2007, 10:09 AM

Flori - I had an awful time with the first 3 week cycle. When I went back in my onc ran a blood test which showed my liver counts went way up so he ordered another ct scan. Normally he would have waited but this was dramatic. This ct was about 4 weeks from the previous one and things got way out of hand.

Mary Anne in TX · 06-06-2007, 11:00 AM

Hi Joy!
Thanks for your update. You needed a break, even a quick one! Aren't friends just the bestest!
Send me your address by my email and I'll send you some products that really work for me. My treat!
My radiologist gives them out now to her patients who need skin help.
Have a blessed day and keep that wonderful smile going.
luv, ma (maryanne796@msn.com)

kacey · 06-06-2007, 11:32 AM

Joy, so glad you got away for a vacation! The meds are working and you will see

progress. You are in my prayers. Kacey