All newly diagnosed Her2 girls.

[nikkiuk]

Just wanted to say that i am coming up for my 2 year anniversary from diagnosis next month and without tempting fate (knock wood, fingers X'd, show a silver coin to the moon) i am feeling great.
Was diagnosed with multi focal grade 2 er neg prg pos her2+++ and 7/14 nodes....i did the full shibang chemo FECand Taxotere and have been in the HERA trial recieving Herceptin every 3 weeks for just over a yr, have another 11 months to go and i feel so great.

You can do it, do not be scared of what used to be a hideous prognosis, my onc is so thrilled with the outcome of Herceptin in early stage and the word "cured" has been quietly branded around.

Demand Herceptin, it is an excellent drug, even though i have had some hiccups with heart issues, i will continue till the end with this nectar for my veins.

Keep going and remember what was once a pretty nasty prognosis has turned full circle with the lovley wonderful Herceptin.

Love 2 all
Nikki

[*_Christine MH_*]

Glad to see you are so optimistic. I told you that it would work out (but even I didn't imagine a 46% improvement in survival after one year of herceptin). What a difference a year makes.

My onc has ok'd herceptin, but there are still delays in getting on it and I am having to pay :-( . I serious considered trying to get below 50kg, but I must be having PMT because all I want to do is eat chocolate (but am being good and resisting that at least), but hey, at least I am going to get it.

It is thrilling that herceptin turns out to be so wonderful, but frustrating that the NHS is being so slow about providing it. My onc seems very upset about the whole thing.

How would you like to write a letter to your MP about herceptin, since the NHS is expected to get around to approving herceptin for early breast cancer between 2007 (my onc's estimate) and 2009 (Cancerbacup's estimate)? There are some sample letters to MPs at the thread: http://www.breastcancercare.org.uk/Chat/Fo...truction/604948 (http://www.breastcancercare.org.uk/Chat/Forums/Treatmentsandreconstruction/604948) if you need some ideas. Some of us are also signing up to the Breakthrough Breastcancer political campaign to get local authorities to act on NICE guidelines, since in 2004 it was estimated that only 1/3 of women with HER2 secondaries were getting herceptin in the UK.

Again, it's great to hear you sounding so positive. I guess this summer you'll have the energy to chase after that son of yours.

Best wishes,

Christine

[Barbara2]

Christine, you do know that Genentech will help you pay for the herceptin if you qualify, right? I believe your income needs to be below $75,000 to qualify. As I understand it, they will pay for the drug, and you would pay for the rest ( administration, etc), but their assist is huge.

I don't have their tele #, but should be easy to locate. I originally saw it on this site.

Good luck.

[*_Christine MH_*]

Hi Barbara,

Thanks for the advice. Unfortunately it doesn't apply for the UK. Things are a real mess over here right now. In a way I am lucky, since even people in the UK who have the money to pay for herceptin and completely fit the criteria for receiving it are finding that they can't get their oncologists to even consider it even though they have really poor prognoses, so some of them are having to go to oncologist after oncologist to find someone who is willing. The problem is that it isn't licensed yet for early breast cancer and won't be until months from now and some oncologists lack the courage necessary to put the latest findings into practice. I know of people whose oncologists have actually told them that herceptin would be the best treatment for them and then said that they couldn't get it, even if they paid, which seems a bit cruel. It's all part of a bigger problem: that Britain really needs to get its overall healthcare spending up to French levels to have any hope of quality . The government spending is at French levels, but private spending on healthcare is too low (although I will certainly be doing my bit over the next year to increase British healthcare spending).

The good news is that it is a bit cheaper over here, although still painfully expensive if you have to fund it yourself, which is why I have been trying to get other people in Britain to write to their MPs and get things moving.

I'll be o.k. I don't need to sell my house, the family car, or anything to afford herceptin. I had been saving money for my old age since my grandmothers all lived to be well over 90. However, without herceptin my chances of having an old age at all aren't that good. I really do wish I were about nine pounds lighter because that would cut my herceptin costs by about a third and I do feel like it is a pretty big gamble.

Anyway, back to Nikki's main point. Herceptin is wonderful and certainly everyone who is node-positive and Her2 3+ should be getting it.

Best wishes,

Christine

[Fontaine]

Christine, I just returned from Phoenix, AZ where I attended a colloqua for school (in an online doctoral program) and as fate would have it, the woman I sat down next to at the first session works for Genetech! She was thrilled to be sitting next to someone on Herceptin.

Here's the good news. They have a program for women who need it, for whom their docs want to give it, but don't have the means to pay for it. So contact them ASAP! I have this woman's card so if you have any problem getting to the right person at Genetech, let me know and I'll call her on your behalf or give you her number.

My e-mail is sachet m at verizon dot net. Remove the space between sachet and m and change the rest (keep the darned Intenet spiders that search for e-mail addy's for spam away!)

[al from canada]

Joe,

Can't we do some politicing / arm twisting / lobbying here? I know the british isles are out of our area but.... we do live in a global village don't we?


Al

[*_Christine MH_*]

Dear Joe,

Thank you for your offer, but I think that sometimes it can backfire when people from one country try to influence the policies of another country. One of the British newspapers was trying to get people in Ohio not to vote for Bush and I think it backfired really badly.

I just received today a letter from the Minister of State in the Department of Health. It wasn't entirely satisfactory on a number of levels, but did contain an assurance that the Department of Health will "do all we can to ensure that the gap between licensing and publication of an appraisal is kept to a minimum." The licensing won't happen until Roche submits its application, which is expected in December. After that private insurance should pick up the cost for those with that coverage. The second appraisal bit would make it available on the National Health Service and that's the bit that could be really delayed. But I will be keeping the letter and holding the government to its word.

Take care,

Christine MH