Decision making time

Julie2 · 04-29-2008, 06:18 PM

Thanks for all the well wishes for my scan results.
My PET/CT scan showed slight progression (from 6mm to 8mm in 6 weeks) in mediastinal nodes when compared to last scan. So I was given the choice of restarting Navelbine as it worked before(from Aug 07 to Oct 07) or wait for 6 weeks for another scan and enter into Herceptin-DM1 trial(the criteria for this trial is tumor should be atleast 1cm) or Herceptin with Tykerb (this one needs insurance approval). So I need to make a decision now. My onc thinks I can wait for 6 weeks for another scan and start Herceptin-DM1 trial. But the decision is entirely up to me.
I really hope for something which can stop this thing forever.This constant worry is so difficult to deal with when you have to raise two small kids. I need some help in deciding. Appreciate your input.

Thanks,
Julie

Faith in Him · 04-29-2008, 07:20 PM

Julie,

I wish I had some answers for you. I feel for you as I have small children as well and I know the worry that comes with that. I hope and pray that the right treatment plan comes to you.

Gentle Hugs,
Tonya

Bill · 04-29-2008, 07:38 PM

Julie, I can't offer much more than prayers and well wishes on this one, but I know your sisters and maybe a brother or two can help. I know how tough it can be to raise children, even without everything you have to go through. It's hard to read between the lines on a website post, but I hope you are considering the long-term pros/cons/stats as well as the short term issues/side effects. I know you're a smart and tough woman like everyone else here, and I'm praying that you receive the answers you need. Just keep doing what you're doing, take in the information, do your "homework" and then sit back and reflect on it, and the answer will come to you. Peace to you, Bill

Becky · 04-29-2008, 08:09 PM

Dear Julie

I suppose a question to ask about the trial is when does it close and how many past chemos are you allowed to have before you can't get into it (sometimes trials exclude heavily pretreated women). That way you might know that the trial is a now or never kind of thing.

Another question to ask is if the Herceptin/Tykerb combo can be combined with a chemo (I am thinking Navelbine since it worked in the past) as the targeted therapies tend to work better if combined with something else.

Is you cancer hormone positive? If it wasn't, maybe its time to biopsy to see if it has changed to hormone positive. Then other drugs can also be employed. This DOES happen and it is ONLY a thought.

Those nodes seem to be pesky but it seems it doesn't wreck havoc anywhere else.

I do know that Lolly also used radiation but she will have to comment if that worked or not.

I think if you get clearer imput from your onc, the right thing to do will come to you naturally. You have tons of options left to kick cancer out the door. I will be thinking about you and if I think of any other questions, I will post again.

Sheila · 04-30-2008, 03:43 AM

Julie
I have dealt with node issues for 4 1/2 yrs straight...Xeloda/Herceptin worked for a year, then stopped...then Taxol/Avastin/Herceptin for the last 10 months...I have had a 6 week reprieve.....this combo worked well, but in my case as soon as I take a chemo break, they return....I am also ER PR -, my friend is doing well for the same thing on Navelbine/Herceptin, but here again she has been on it for 10 months straight....I have resigned myself to know I will probably be in treatment forever.....you may be too....I know Lolly has been for a long time. Seems everytime we get a break, the nodes return with a vengence.