Interesting article on our fellow Chinese HER2 sisters...

[RhondaH]

I know that some of us are "blessed" to get Herceptin, but there are those that still aren't, here is a thought provoking article that once again reminds me how blessed I am. Take care and God bless.

http://www.bloggernews.net/2006/06/c...league-of.html

Rhonda

[Christine MH-UK]

I read yesterday that in much of East Europe it is nearly impossible to get herceptin, even for metastatic breast cancer. In the Czech Republic, they reserve it for women under the age of 40. Probably most women globally can't get modern treatments outside of a sponsored trial.

Is too many drugs always the best solution ? Herceptin is so new and nobody knows about it's log term effects.

I am in a very depressed mood today. I just feel is it really worth living this life which has the darkness of life threatening disease all the time. There hasn't been a single day since my diagnosis (14 months) that I haven't cried and prayed "God please give me my old days back when I didn't have this fear hovering over me. Even one day would be great , when I can live in freedom". I am not sure if all of us feel the same way but I feel choked and I find it hard to continue to live in this mode. Even soliders are free when they are out from battle field but with cancer , the battle never ends.

I aplogize for writing my thoughts. It's just that when I say these things to people who don't have this disease , they just don't get it. Somtimes they yell, laugh or get angry at me. I just don't know how to explain in to them.

If only I could have one to one conversation with God , I would definitely ask "Where did I go wrong....?"

[CLTann]

I just wrote to the news editor that I plan to make a small donation to the courageous Chinese women. Thanks for posting this article.

Ann

[al from Canada]

And I know everyone must get really bummed out on a very regular basis. yet how many times has it been said that cancer doesn't affect one person but everyone who cares about that person. Think of this as a time to draw people towards you, as they may be hurting just as much as you are. God has nothing to do with this and you didn't do anything wrong, maybe it's just the luck of the draw. Two things I do know: is how many times a day I ask myself they very same questions and two, if I could have traded places with Linda... those who know me on this board can predict the answer.

The moral of the story: you're not hurting alone.

Best wishes,
Al
ps don't forget to register

[Sheila]

I have found that the best way for me to deal with all of this is live my life to the fullest....none of us can predict the future...no one can predict that they will get breast cancer....the greatest gift to me is when someone says...you don't look like you have stage IV breast cancer....and there are many days I dont feel like I do....I worked with cancer patients in the hospital for many years and attitude is a very powerful treatment in this disease!

[mamacze]

Rhonda,
You are incredibly motivating; I love reading your posts and threads. Just when I have a smidg of a thought to feel sorry for myself, I stumble on things like this incredible story you have posted about these brave Chinese women, and I am reminded all over again of all the things I have to be thankful for.
And Sheila, you are right, attitude is huge. But as our unregistered guest has pointed out, sometimes the burden can weigh down the greatest desire for positive attitude. Friends like you and Rhonda and all here are a great help in keeping us focused on living.
Love Kim from CT

[sarah]

dear Rhonda,
Terrible about the women who can't get this important drug. Can we do anything to help motivate those countries to do more or the drug companies to do more? I think it has a lot to do with price. Remember England changed its policy with pressure about it. Of course England's a richer country but still.....

dear unregistered - I feel funny talking to a nameless person but....
Sheila's right about attitude and Al's right - it's not your fault, it's probably genetic but certainly noting you did, caused it and God isn't punishing you.
I would strongly advise reading books, watching movies, getting out of yourself. TV oftens seems to have a negative effect perhaps because of news and the unrealistic aspects of it. Go to yoga classes - they're very good physically and mentally - one of my favorite feel good things to do and if concentration is a problem for you, which I suspect it is, then this should help. Then there's always trancendental meditation which teaches concentration and stops you from focuses so much on yourself. Also getting outside, walking and maybe getting involved in charity work. There's nothing like helping others to make you feel better about yourself.
You can help yourself and feel better but only if you start to do something about it. Also as silly as this sounds practice smiling. the very act of smiling does something chemically I don't understand but helps make you happier!!! So start smiling. You also sound like you need some good hugs. oh did I mention animals!!!! nothing like an animal to perk you up!
good luck in your fight
sarah

[RhondaH]

AWESOME suggestions and Kim...my thinking is "can it be worse"? and then I answer "yes, it can" and then I think of all my blessings and not my problems. Also, Sarah, I wish we could. Unfortunately, China is a communist country (my sons best friend is from China) not to mention that "women" are not thought highly of (not sure if you've heard the story of how in China there is a 1 child per couple limit and for those that have girls, they tend to abandon them so that they can try to have another...preferably a boy and NOW the problem they are experiencing is that they have all these boys and no girls to marry them to) and like Al said, there are so many OTHER countries that have the same experiences. Take care and God bless.

Rhonda

[Cathya]

Hi;

I had an interesting discussion last evening with a federal politician here in Canada. I was asking about our health care system and he told me he believes that countries such as the US, Canada and the EU must get together and deal with pharmaceutical companies and drugs on an international basis.....for instance your FDA in the US is able to get drugs registered much more quickly than Canada because we have a smaller organization. This would be the first step in a process of becoming global. I love the idea. The article on those chinese women really does hit your heart. We really are so lucky to live where we do and have all of the benefits. I also get down sometimes....as I believe we all can do from time to time.....we are after all living with a life threatening illness. When that happens to me I try to pull myself into the day.....this day....what I am doing....who I am with. It is only when I think longer term that I can worry a bit so I try not to do that....or at least not to do that without being in the presense of an extreme optomist....lol.

Cathy

[Christine MH-UK]

I hope that you are feeling a bit better today, unregistered guest. While I think that life was better before breast cancer, certainly there are still some good things and helps me to focus on what I still have rather than what I have lost.

The question of why bad things happen to good people is an old one and in the early days of breast cancer I did feel a bit like Job (who lost everything but his life). Instead of "why me?," I think "why not me?" Time and chance happen, unfortunately. But, at least for her2 positive breast cancer, the clinical proof is that the drugs have made a big difference to the survival of her2 patients and I am thankful for that.

The governments do need to get things together and work things out. Right now there are real problems in comparing US and European clinical trials on breast cancer simply because no study has been done comparing the efficacy of FEC (the European standard anthracycline) with AC (the US standard), so studies based on those combinations don't readily translate, although this problem might disappear if they are replaced by a new anthracycline. From a her2 perspective, there have been two drugs trials now, one in Finnland and one in Miami, with fairly strong results indicating that perhaps giving herceptin only during chemo is adequate, but attempts to get the larger trial, FinHer, tested more widely in Europe seem to be foundering because the governments don't want to shell out for this type of research, even though these small trials had fewer heart problems and were highly effective (83% disease free survival at 3 years for stage III patients in the Miami trial of herceptin+cisplatin+taxotere->AC with low cardiotoxicity (1 woman with congestive heart failure out of arounf 40). The costs of the full-year of herceptin (not just the drug, but also the administration) mean that it is simply too expensive for many countries and you would think the governments would be chomping at the bit to find a more efficient use, but apparently not. There is some good material on this in an article 'Beyond the Herceptin Hype,' which is, unlike many similarly titled items on the internet, an intelligent discussion of the problem of expensive drugs.
http://www.cancerworld.org/CancerWor...e.aspx?id=1083

[hannah68]

Dear All,
Let me share my experience about getting Herceptin here.After I was done with standard chemo, surgery and RT in 2005, my surgeon suggested I take a year of Herceptin.At that time she thought my cancer was local hence herceptin as a preventive maintenance treatment. We like the idea very much but the cost is very expensive. We have no insurance and have to pay by ourselves. Every oncologists were not supportive about this because of the cost and also they thought herceptin was at a clinical trial stage and bla..bla.At that time,my surgeon left for UK and I was left alone without any damn doctors monitoring my progress with herceptin. Only one nurse helps me with the infusions and so on.

When I went to get my treatment, these doctors didnt acknowledge my presence..
Now I am into 14th session and thanks God, and thanks my surgeon for recommending me this drug. I am NED for the rest of my body except for
my brain- we found tumors early this month.

I found this site and very GRATEFUL for all the infos and encouraging stories from everybody here.
Take care and God Bless.

Dear Members,

I am very thankful to all of you for your tremendous support. I just opened this link and read so many responses and I felt good that someone out there cares for how I feel. I don't even have the words to thank all of you ( I am actually crying as I am typing this message).

It's just that sometimes I feel so lonely in this fight that I feel lost but the messages that all of you have sent gives me comfort and hope. I hope someday I will be the one comforting others.

Thank you and God bless you all !!!!

Rose

[Sheila]

Rose

We are all here for each other... I do not know how desperate I might feel without the love and support I have found here....we are all in this together, we didn't ask for this, we don't deserve this, but life has dealt us this, and so we go on, trying to make something positive out of all of this. If we can make one life better from this experience, then it is not a bad journey....
remember, it is out of our hands, we are not given more than we can take...although the limits seem to be pushed at times.

[CherylS]

Rose,

I don't have the answer to why these things happen to us either. One thing I have definitely learned through my cancer journey however, is that if we allow it, God is waiting to use this difficult challenge in our lives to draw us closer to Himself and to show His loving character in ways no other experience can. Remember, God is not a religion, He is the real, living, loving, caring, forgiving creator of heaven and earth and you. He is waiting for you to cry out to Him.
I know that this can sound trivial or cliche', but I can honestly say that I am a happier, better, more at peace person now. I love my family and my life, but when my life here is through a better one awaits me. My duty here for whatever time remains is to love those around me with the love of Jesus, and to help Him offer the same free gift of the promises I have to as many others as possibe. Open your heart up to Him, ask Him to reveal Himself to you and mean it, and then hang on for the ride of your life.

You are much stronger than you feel right now. Hang in there, and keep posting. You have found a great resource here to share your feelings, thoughts, fears, conerns.

God Bless,
Cheryl

[Marily]

Rose,
I have been reading all the wonderful answers to you and I had to add my 2 bits ,even though much of what I would have said has been already put down in here and, very elegantly I might add. I found first when I got down, to just live within each minute and not look ahead. But make it the best minute you can have! I progress on slowely to an hour and than to days. At times, and I have been at this for 6 years, Looking too far ahead makes me crazy, so I pull back and look at things in smaller intervals again.
I have found that every "bad thing" has been a good thing,
I have learned so much about me and that I am very strong. I have been able to use my Cancer, and my heart problems to teach others and help advocate for them. I use every smidgon of knowledge learned from experience and not just books ,(that I would not have had) to it's best benefit.
I have found being positive really does me good, and my smiling and being happy helps my family and friends. I Live my live with a lot of Love from friends old, and also new ones (6 were Herceptin girls. this makes a fantastic support group for each of us!) I also made new friends who I don't talk about cancer but just have fun with! My family, I share my feelings openly. They need to know what we are feeling and they need to be able to share their feelings with us. I found if I give them a chance they are always there for me. Most people don't know what to do or say...I talk openly to everyone making it "just another part of my life" Find little things they can do for you and learn to graciously accept what they do. For me that was very hard because I am a giver and doer.. not a taker. They feel wonderful having some way to help you and you have a win-win situation.
I am not saying I do not have my low times, but they are much less and I can get out of them faster. I also have started Chi Gong and Tae Chi two fatastic ways to up those endorphins. If you can't do that just try walking! there is a wonderful book out there called "Spiritual walking" you breath as you walk as you chant happy thoughts kind of like a mantra... and exercise through our cancer treatments truly does help.
I also take an antidepresent. My friends and I in the "Yaya's all feel that if you add cancer to an already busy and stressful life, this is a very important part of your cancer treatment. Don't be afraid to ask for a "happy pill" They have a place in our lives.

Wishing you much love and hugs..
Marily
Live, Love and Laugh and Always Allow Miracles