been too long

[Joy]

Hi everyone, I have missed reading and catching up so much. I finally took some time here today on a snowy morning in Colorado to do so. I am so grateful to have all of you in my cyberlife. I love the letter Joe received from the oncologist and have to agree with every bit of it. thank you to everyone who attended SABCS, too.

I have a dumb update and a question on behalf of a client of mine.

Firstly, I began chemo again for the third time due to some progression of old liver mets and the appearnace of new ones (I had great control for almost 3 years with hormonal approaches). So now I'm doing taxol/carbo/herceptin weekly and zometa monthly as we are still a little unsure of bone mets. i have never had a weekly protocol before and know the studies and the logic are behind it, but I feel like i'm more foggy for longer periods of time and it stinks. We are looking at 4-6 months of this and i know i can do it. I just hope it works. Any thoughts or encouragement would be appreciated.

Also I have a her2 client who has had extensive bone mets for years and had WBR for brain mets a few years ago that has so far proven to be effective . Because of high markers she is back in chemo (xeloda with her herceptin and zometa) after good control hormonally. She is good and appears to be responding. She would like to know if anyone who has had WBR and lost their hair (which she did and it came back just a little thinner on top), had it come back and then went through a chemo causing hair loss after which the hair came back? She was curious as to whether, after all of that, the hair would really come back. Xeloda doesn't cause much hair loss, she is just thinking ahead. I think it would as after she has lost it from chemo before and it has come back and it just seems that she must have 'strong-willed' hair for it to come back after WBR too.

Oh and since i'm going on about it, what experiences have people had with weekly taxol and hair loss? I'm prepared for hairlessness, but some say it can be more gradual this way and is that true for eyelashes and eyebrows? Trivial, i know, but i'm just curious.

Mostly i'm ready to kick the crap out of these mets and get to NED as I have never been there-think it's possible? I will get another 6 month brain mri in january and I'm already anxious about that too.

My wish for all of you in this season of reverance is peace, warmth and love and i'm sending all of you as much as i can.

[StephN]

Hey Joy -
Was beginning to wonder where your smiling face was.
Knew you were considering a chemo regimin again, so glad to hear that you have a good one started. I recall some other gals on this board who used this combo when it was first really approved, and there were some good results.

For me Taxol was a good drug to put a halt to my raging liver mets, but I used it with navelbine instead of carbo. The three-pronged approach to kill the cancer is a good one. And I was also on it weekly. This was better overall as I had pretty high doses.

I did lose my hair completely (except for some on my lower legs!) for the second time. The brows and lashes were slow to go, but did. My left brow has still not grown all the way back in (but maybe the Gamma Knife radiation did not help that either).

Basically I have lost my hair completely twice and had it thin alarmingly after my Gamma Knife last Jan. It has now come back to just about normal and I had a body perm just before San Antonio, so it looks a little fuller than it actually is.
I did take some supplements that are supposed to nourish the hair, skin and scalp as well as use Nioxin hair care products.

Hang in there with the weekly treatments - it worked for me and there has been no sign of my liver mets for over 3.5 years. You CAN get there.

[RhondaH]

a prayer for you. And, please don't be such a stranger as we all really miss you.

Rhonda Hoffman

[al from Canada]

STOMP-OUT those liver mets!! Good luck.

al

You sound just like my wifes condition. Been good for 3 years on Aridimex and Zometa. Things just started up again and she is on Taxol, carbo, and Herceptin. She had her 1st dose last week and is doing fine. No hair loss yet, but I am sure it is coming. The nurse assured us of that. It is nice to find someone with similar diagnosis. This site is a great relief for me.


JOhn

[Joy]

This site is a great relief to me too!

[Diane H]

Hi Joy, I cannot offer any knowledgeable advice but am wishing and hoping for you a quick trip to NED, your beautiful smiling face and all your help with posts in the past are a great boon to this site.

[kristen]

Hi Joy,

It has been too long. I am sorry you have to kick it in the butt again, but you'll do it, do doubt here. I also can not offer any advice on anything your going through, but know that your in my prayers and wishing you the best now and always. Please don't stay away so long. We do miss your posts. Your a highlight in our day. You have one of the greatest pictures on here. That is one great smile.

[Gina]

So good to hear from you...hang in there...GINA

[michele u]

Joy,

I missed you!! I'm glad your back.Keep the faith, and know that God is with you every step of the way.