Herceptin on the news

[michele u]

Has everyone watched the world news?! Herceptin is all over the news today.They are finally talking about what we've all been talking about since April. It is all good news, but now it brings up the question we are all thinking. Should we all stay on Herceptin, maybe every 2-3 months to prevent recurrence? Alot of us on the site are stage 4 and already taking Herceptin, but for us on the trial and that are stage 1-3, we are still afraid of recurrence and I think if Herceptin has worked for us initially, why stop? I know they will all say that we don't want to become resistant to it, but heh, my first choice is no recurrence!! Maybe Joe can email his "contacts" about this issue. I'm hoping that now they have proven that Herceptin early helps, and that this could be our "Tamoxifen" Lets hope the researches also are thinking the same thing!!

[al from Canada]

Well said Michele!!!!!!!!!!

That's how the revolution starts: one small group of people making a lot of noise about something they really believe in. The simple answer is "don't say no"!

Al

[StephN]

I also saw some news clips on Herceptin starting yesterday - not just sound bites, but actually took a couple of minutes!

There is SO MUCH they don't say that I feel that it is almost like MISinformation. Cancer is complicated and the short version of the trials and HER2 will give too many people the wrong idea about it.

For instance I got an email last night from a well-meaning friend who wanted me to know that a "cure" had been found. I had to thank him but inform him that this is the VERY DRUG that has been keeping me alive for over 4 years now. He is also a colon cancer survivor so has more background on cancer personally than most people.

There needs to be more followup by the media, but maybe it is up to us to all call our local stations!

Michele - my two cents worth is that the cost of Herceptin is too high to keep people on it longer than the trials have allowed. As young survivors you will reach your insurance cap long before you are eligible for Medicare! I am still 8 years away from Medicare age and am over $600,000 into my cap of 1 million.
Not to say that there should not be a NEW trial for some HER2 positive patients - say ... those with a certain number of positive nodes!

[michele u]

Steph, On the note about cost. That's going to be the insurance companies excuse not to pay for it. In this case with the good news about herceptin, Genetech is going to make ALOT of money from Herceptin now. I think they need to drop the cost of the drug to compansate the long term need for this for alot of us. Infusions of anything are expensive, but maybe in the future there will be a pill form invented? It's too bad it's always about money these days isn't it?!

[RhondaH]

one of our local news stations was at the cancer center I go to and interviewed my oncologist and the girl I get Herceptin with and the reporter asked my friend "Isn't this available in a pill", her reply was "If it WAS, I wouldn't be here today getting my infusion". I also agree that the law of supply and demand will eventually kick in and as more people begin to take Herceptin, the cost will go down.

[Lyn]

Hi, I am in Australia, and it has been all over our news, with of course the wrong perspective. They are saying women are being allowed to die because they are being denied the expensive drug Herceptin, they forget to mention that you have to have the HER2 test, or even what that is. It has been FDA approved here for a few years now, once I prime minister's wife got BC of course, their argument has been the prohibitive cost and it is only free to those who to be quite crude, on death row, funny I never looked at myself as that but if that is how my onc painted the picture for me to get it, well it has been working and I am living proof, even he said I should have been dead a long time ago. As for the cost, like anything that is new, or new to the knowledge of the rest of the world, they want their pound of flesh up front to pay for their original outlay, but how many times can they pay for it over and over again, just like the Play Station Game, how expensive was that when it first came on the market and now you can just about buy them in the supermarket along television sets. Heaven Forbid if another drug company comes up with a genetic brand there will be a price war, and why not there is just about a generic brand for every other drug, but our luck it will be exclusive to Genetec. It is a catch 22 with the drug companies, they are really only interested in the money made from shares and us victims are the porns, there would be a handful excited about finding a cure for cancer but then what will they have to discover to make their next bundle of cash, so they can't do without the victims like us. I don't understand our government, just about every day they are giving away billions of dollars to other less fortunate countries, no doubt tax funded but with the sick need to withdraw from the money tank for drugs they are denied this and told to pay outrageous amounts. So what is the answer, we can't go on strike and not take the drugs, instead we are held to ransome to fight another day. Now I will get off my little soap box and put some more positive energy back into another post. Maybe we need a few more politicians or their families to succomb to the big C, or if you can't beat them join them, anyone up for politics?

Love & Hugs Lyn