Misbehaving

[dede]

I have not posted for awhile- I am stage iv her2+++, diagnosed March 2003. I had a 9x10 cm mass in my left breast, with 2 sets of nodes involved & mets to my liver. I did epirubicin & taxatere until July, then herceptin every 3 wks. (my scans were clear in Aug) In Jan I had a ct scan & there is one small lymph node on my left side that seemed to be growing. We decided to wait 3 mos, so I had a ct scan Wed, and saw the doc today. That lymph node still does not want to behave! I am getting a pet scan & mugga next week, and will start gemzar, along with the herceptin on a weekly basis.

Is this the way this is going to go from here on out? Has anyone else ever had this combo? Will I lose the little hair I have finally acquired? (Although its not much, I really don't want to wear the wig all summer! Too hot, and my although my grandkids had a blast pulling it off!) Do you think they could just give me the cure & get this over with??? This was NOT on my list of things to do in my lifetime...I even checked it again to make sure...

Thanx!

[Jackie]

Hi Dede,
I know exactly what you mean...this wasn't on my list of things to do in my lifetime either!! I am er+, her2+++, and have mets to bones & skin. I was on navelbine for 6 mos, then had progression. My onc and I selected gemzar because I did not want to lose my hair again, and so far it's only thinned a little, but there's a question of whether it's working for me. I guess the next choice will have to be one of the taxanes, which will probably mean hair loss. I've had minimal side effects with gemzar, so maybe it will be easy on you, too. I also hated wearing that wig in the summer...wish I was one of those brave broads who just goes without, but I'm not. One of the ladies in the treatment room this week took her wig off and put it on the table next to her and took a nap....which made me chuckle. Then an older black gentleman broke into Old Man River, and did it justice! After sitting in there for hours, I was exhausted, but I have to say it was one of my more unusual sessions. As the other courageous women who post here always say, live for today, enjoy your loved ones, and take one day at a time. Research has made tremendous strides and hopefully will continue to develop new drugs to lengthen our lives! Best wishes to you!

[Lyn]

Hi, have you tried Navelbine with Herceptin, it worked for me, same deal stubborn one but now I have another one to deal with on other side of neck, like you I didn't want to loose my hair for the third time so I will be having Herceptin with Carbobplatin, and fingers crossed I won't be unlucky and loose my hair, I have been doing this since 1998 staying one step ahead of it, and like you I just to start having a normal life.

Love & Hugs Lyn

[SueF2]

My original dx was a 10 cm mass in right breast. Had AC, then Taxotere to reduce size, then surgery. My hair actually started to come back while on Taxotere, but after over a year, I still can't go without a wig. The whole top front is so bare. It did come in black and gray AND straight (instead of brownish).

You're braver then I am. My grandkids (who I see only a couple of times a year, though) haven't seen me without wig.

I also had radiation after surgery. And 2 months after that, was dx with mets to liver and bones. Am now taking Navelbine. No progression as yet.

Glad to hear that Gemzar didn't have bad side effects since that may be my next one.

Good luck, and no, this certainly came as a surprise because I had been very healthy my whole life.

Sue

[Lyn]

Hi there, I lost my hair on Taxotere, it was one dose a month. A friend of mine had Taxol every week with her herseptin and she didn't loose her hair,this was a very long procedure and used to take up most of her day, she had previously been on other drugs and lost her hair, it seems it is less toxic when given this way. Hope this helps.


Lyn

[Brian]

My wife had herceptin and gemzar and suffered few side effects. No hair loss. Only downside was a drop in her neutrophil counts which were treated with neulasta. Gemzar works well with Herceptin. Wife NED since last August.