Re: It's back...
 

Chelee,

Sorry to hear about the node. But good luck with your decision. It's a tough one. And I'll keep my fingers crossed that you'll get the T-DM1.

Joan

Re: It's back...
 

Joan, I have decided to pass on this trial. I was really only interested in T-DM1 if I had to drive that far wkly. (2 hrs one way) I also found out there is no cross over to T-DM1 if I were to get the Tykerb/Xeloda arm and progress. I also don't like the idea that I will be off Herceptin if I get the Tykerb/Xeloda arm. (My CA27.29 dropped when I started back on Herceptin.)

Now I don't know what to do? I still have lots of questions and no answers? I was hoping when I was out at UCLA I could cover all my options but there just didn't seem to be enough time. It was mainly about the trial and what was involved in it. My onc is going to ask me what I want to do and I haven't a clue? Maybe Tykerb/Herceptin like Dr. Slamon mentioned to me at a prior appt...I just don't know? If anyone has any idea's I'd love to hear them...might help me brainstorm this a bit. CA27.29 was still in NED range...so low measurable disease so far.

(I've had so many distractions...one very ill dog and my MIL fell and broke her hip. Trying to take care of everyone & myself...when it rains it pours.)

Chelee

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Chelee - I wish I had some words of wisdom for you, but unfortunately I don't. I will keep you in my thoughts and prayers though. And please, keep us posted.

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Cheele: Tykerb/Herceptin and if it doesn't show strong results soon, add Xeloda to the mix?

I'm not sure from your siggy where mets are. Just the axilla now?

Hope you find your way on to an effective treatment.

Stay strong...Darlene

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Cheele,

Tykerb and Herceptin is not a bad option when disease is not that big. In addition to that I think it is better to get the axilla lymph node removed. You don't need to run out of options just to take care of that one node.

Julie

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Darlene, Yes, it is just the rt axilla at present...nothing new seen. (Bone met to left ilium is still stable.) Since this is the 2nd time for that one pesky node...I've like to just have it removed. But I've heard its good to leave it in to moniter the affects of trt. I've heard pro and con on this? In a perfect world I'd like to think I could have it removed and maintain a long time on Herceptin/Zometa/Femara. (I can dream right. ) :)

Chelee

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Chelee: I'm not down with let's just keep it for monitoring reasons. Shit, isn't that what scans are for? How about Cyberknife for that pesky node? It can potentially treat tumors anywhere in the body. If not, I'm with you on cutting that sucker out and maintaining your dream treatment.

Yes, girlfriend continue to dream. It's the least you should get to do while dealing with all of this.

Let us know how it goes....Darlene

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Darlene, What I find interesting is the different answers I get when I ask about removing the node...or leaving it there? It depends on who I ask and what treatment they are offering me.

If it's clinical trial then it's a good way to moniter trt--and for a trial I'm sure that is very true. But I did call a place that does Cyberknife and they said I was the "perfect" canidate for this and wanted me to come in for a consult asap. Then if I ask my surgeon he says yes it is a very real option to consider. If I had several nodes popping up causing a problem I wouldn't even consider it...but it's just this one every time. (So far anyway.) I wish all these doctors I talk to were on the same page...but each one says something different. (But I will continue my dreams and fantasties...that's one thing they can't take away from me.) :)

Chelee

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Sweet Chelee: What it comes to is, choose a treatment that makes you the most comfortable. I have found that this disease has many options and a lot of gray ground. The recommendations we get are often influenced by what that doctor has at his disposal and his philosophy. Sure doesn't mean that is the best choice for you. I have learned to cast a big net to pull in all resources to make the best decision for me. No one doctor can know everything. Like you, I travel to thought leaders and use everyone's info before making MY decision.

Sometimes being proactive empowers me and gives me courage, other times it scares me and wears me down. That's why I value this forum and strong women like yourself to help keep going in the right direction.

Good luck on this and I hope to hear a success story on getting rid of that pain in the ass node. When I dream, it's not about treatment, it seems to be about my dreamy neurosurgeon!!! I guess that's good medicine too!!

Your metsister....Darlene

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Chelee,

I just wanted you to know that I was thinking about you. I hate it that you got this crappy news. And I especially hate it that you have to make all these decisions. It is a cruel form of torture.

Sending you my warmest thoughts and prayers.

Maureen

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I am thinking of you too. Get all the information you need to make those important decisions. That is right. One doctor doesn't know everything, no matter how educated or experienced they are. Just like other people doctors have different interests, philosophies, and experience with patients. Sometimes we also have to twist some arms to get what we know we need.
Good luck. Hang in there. Keep putting one foot in front of the other.

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Chelee,

Just wanted you to know I'm thinking of you.

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I'm thinking of you too. Gentle hugs, as you consider options.

Barb A.

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Hi Chelee,

Just chiming in here to let you know I am also thinking about you as you weigh your different treatment options.

all the best
caya

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Behind with reading the posts. Sorry to hear you are searching for answers to tough questions. Praying for good decisions and answers for you.