Fed Up

I always read the posts here although I don't often post myself. I have bone mets, discovered at first diagnosis in April 2003. Although I am keeping really well, I came back from the hospital yesterday just totally fed up. The doctor (who is really nice) just seemed really short on hope. My markers have been coming down for the past couple of months (I am on Arimidex and Herceptin) and I was very pleased about this, he told me that the last drop in marker levels was not as much as the previous drop and that they would probably rise again in the Autumn. I have to admit that it is my fault for asking him how long I might be stable on this treatment for. But I feel so unhappy, I was kind of hoping for a longer effect. The uncertainty is a killer isn't it, my sisters? I don't know where I go next if this treatment does stop working, also it may well go on longer -he doesn't know, being "just a doctor" as my husband always says. What next. Sorry for all the rambling - just felt the need to put it all down and ask if anyone else is in a similar position or feeling the same or if anyone else wants a similar whinge or even to share a story of hope. I am
er+
Her2+
38 yrs old
15/17 nodes positive
L/mastectomy
bone mets to spine discovered at diagnosis in April 2003
Having Arimidex and Herceptin
In the UK!!
Love and Healing to all of us
Caroline x

Caroline,

Don't give up! You have many options with chemo. What you're on now is a hormonal treatment. There are 4-5 different chemo regimens you can go on before you run out of options.
Your friend,
Cathy W

Caroline,
Why isn't your dr adding different chemo's to your regimen? There are so many different kinds of chemo you could try. Why don't you look into a clinical trial? How about the new drug Lapitinib? There should be some trials for this drug, and it is oral. I just think if this is not working now try something else!

Caroline,
Please don't give up... I hear that bone mets are very treatable... get another opinion and try other forms of Chemo.

As a sassy stage IV who was given months to live, with numerous liver mets, in 3/03, I am now in remission. Never, ever give up hope or let one doctor let you down.. You are your best advocate. Go out there and find a doctor that is willing to work hard for you!

Hugs and Prayers,
Janelle

You keep a positive attitude even if your doc doesn't. Get a second opinion. You have a long ways to go, lots of different options. You just have to find a doctor who is interested, so many of them are so bleak. Do lots of research so you have the knowledge to talk to them. Thats what I do and it stuns them into realizing I am serious about beating this thing. We aren't statistics, we are real human beings with lots of strength. God brought us to it, he will bring us through it.

Dear Caroline

I read this in an article this morning and quite like it

'See your disease as the seasons of the year. You will stumble , you will fall. But remember no matter how harsh the winter, spring always comes.'

It is from Chinese doctor and I found it helpful.

love Lindaw

Caroline,
There are so many of us diagnosed Stage iv primary...I have met so many others as well who are alive and happy and healthy. Get second and third opinions. Don't let the doc's negative vibes get you down. Keep the faith! Alicia