decision time: if you NEVER responded to tyk+herc did you respond to other her2 inhi
 

Hi all,

news are not good from last scan even with direct treatment now. and now the growth is quite fast. some could be necrotic area hoping

I really need to get on a trial but I am wondering this. If I am one of these sub her2 not responding to treatment what is the point to continue that way.. with 9 tumours now 2.2cm the bigger one (from 1.3 on last scan a month ago).with many 1.5 cm with an increase of 50% to 100% in one month (from one PTACE to the next). [added later: the 9 tumours are in the lungs]

I am shocked, and after owling my pain, i decided that i am so fed up of crying that all i can do is to move forward and stop crying but try to get more info please let me know

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Hi FOB
So sorry to hear this news. I was really hoping that things would be stable.
What are the sites of the 9 tumours?
I wondered if any of the T-DM1 trials were still running here in the UK. I know they are randomised but you may be lucky and get in the right arm.
I understand your concern about being in a sub group but it may just be that your particular tumours are not responsive to your current treatment.
Wondered if now was the time for a second opinion? As you will be aware you are entitled to this free on the NHS. I believe that sometimes a new set of eyes is useful and if you pick a major centre they are likely to have access to the latest trials.
Is there an option for you to go abroad for treatment? I know you have done this before but it's costly.

Thinking of you
Ellie

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

I am so sorry to read your news. Have you tried Halaven? Several people in this group have been doing well on it.
Try to check www.clinicaltrials.gov and look up her2 positive breast cancer trials in the search box. There might be trials that are available in your area. I think you have to scroll down to near the bottom of each trial to see trial locations, but it is worth a try. There might be something that you and your oncologist are not aware of at the moment.
Take care. Don't give up !!!!!!! Keep putting one foot in front of the other and keep going no matter what.

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Elaine, FOB is in the UK. I do agree with Ellie, FOB, TDM-1 would be a real opportunity for you. I hope some of our more versed propeller-heads chime in soon. I do suggest reminding everyone of where your tumors are located.

Sending prayers from across the pond.

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Lungs

Thank you all for input

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Some trials listed on www.clinicaltrials.gov have sites in other countries besides the U. S. A.
You can also do a regular internet browser search
for something like this-------"breast cancer clinical trials for her2 breast cancer in the UK".

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

FOB, I had no idea how strong a woman could be until I came to this site. I want to be just like you! You always show such strength! Please know you and your family are in my prayers.

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Sorry to hear your news FOB.I have fairly frequent bad news too but about my liver not lungs. TDM-1 is chemo +herceptin and although I have not responded to Tykerb/Herceptin without chemo I am still hopeful I will respond to TDM-1 as I have to the combo of chemos +targetted before. I see Tykerb and Herceptin as necesssary but not sufficient for tumour control in my case. Please don't lose heart.
Trish

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Trish
You have raised a really good point. My onc is not yet convinced that herceptin and tykerb on their own without adding a chemo is successful for everyone. He sited a few patients that it kept stable but said for most they need an addition of chemo.
As T-DM1 has a chemo 'bound' to it this felt like a good option especially due to less horrible side effects. One of the problems we all face is eventual resistence to herceptin.Hopefully research will soon bring us ways of overcoming it.

Ellie


Ellie

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

FOB
I did not have a great response to Tykerb/Herceptin, it seemed to work for a short time, and the same happened with TDM-1....maybe the TDM-1 with Pertuzamab is something that will be more readily available, until then, I seem to respond best to herceptin and a chemo agent.....Halaven worked well for 7 months, now Gemzar....hope this helps

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Ellie
Even if we are resistant it is possible that the herceptin stilll has a role-at least until something better comes along. The frustration is that research has brought us more options like TDM, Pertuzumab and Halaven that aren't available to some of us. I hope you stay stable at least until these things become available to you in the UK.
Trish

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Hi Trish
Totally agree. As I understand it sometimes adding a chemo to herceptin can 'kick start it'.
Thanks for your good wishes. It's very frustrating here in the UK when I read that some sisters can't access what would really help them!

Ellie

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Ellie,

My oncologist feels the same way about the Herceptin/TyKerb. I go for blood work Friday. It will be interesting to see what my TMs are. They went from 71 to 58 after doing the loading dose and Tykerb for three weeks.

Amelia

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

thank you all for your best wishes and suggestion, the german prof say maybe that I can still get them lasered and that the important thing was that there were no new tumours..i do not know how much of what he said was out of kindness (waiting on decisions) Anyhow i am thinking go on navelbine at the same time, i have an appointment next week and will discuss.

Waiting , i can now feel my lungs and i am i have the impression that i am a bit short of breath. I rememebr reading somewhere that the lungs were the biggest organ and that we could live with quite a bit shopped up.

having been at home alone for quite a while know due to my digestive prob and pain in the butt it is all getting so hard to cope with this board reminds you that courage is

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

also can i have navelbine iv? not sure my stomach can take anymore chemo..

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Hi FOB
Yes you can have navelbine by infusion.My understanding is that it's the preferred route here in the UK.
Ellie

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

thanks Ellie good to know

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Hi Fullobeans

I am presently on Navelbine (Vinorelbine) for mets in my lungs. Was on Xeloda and Tykerb for 2 and a half months and the mets progressed. Also on oxygen. Very restrictive.

I have had four treatments and probably my oncol will give me two more, then a cat scan. I preferred the other treatment, your life did not change much with the pills. Oh well, can't have everything.

Gail

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Hi FOB;

I'm sorry to hear the news. Just like the rest of the sisters on the site, your best hope is to get on a clinical trial. I'm sure they are running at least one for bc that will benefit you.

Please check into it. Keep us posted.

With Love,

Adriana

Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
 

Just an fyi here--been on hercep-tykerb the past 21 months, so far so good. Ceesun