Mom on Herceptin

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xanadu
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Postby xanadu » Mon Mar 16, 2009 12:38 pm

Thanks Janine.
That means so much to me.

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Janine
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Re: Mom on Herceptin

Postby Janine » Sun Mar 08, 2009 7:59 pm

Janine

xanadu
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Postby xanadu » Sun Mar 08, 2009 4:31 pm


Belinda
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Postby Belinda » Wed Feb 25, 2009 10:30 am

Sorry Xanadu - I missed your question - yes - please do go to the HER2 forum that Janine mentioned - there is a lot of information there. You may find the discussion board both scary and useful - scary because you'll encounter a lot more women with recurrences and even some women losing their battle - but it is important to remember that forum is very very large but even so the rate at which sad things happen to HER2 women isn't nearly as frequent in the entire population of HER2 women as it seems to be on that board. My tip would be to check out the information sections, and to look for posts by Lani - she's very knowledgeable and seems to have made it a full-time job to keep an eye on emerging research world-wide affecting HER2 women.

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Dx 3 Jan 2007, 4x3x3 cm IDC and 2 other tumours 1.5cm each, 6/19+ nodes, ER-, PR-, HER2+, 4 AC, 12 weekly Taxol + herceptin, 30ish rads, Herceptin finished May 08, currently watching a lung nodule.

xanadu
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Postby xanadu » Tue Feb 24, 2009 11:03 pm

Bless all you wonderful and supportive people here.

Mom's overseas now as I type this message out for her 8th Herceptin infusion. The Doc will see her tomorrow and she will b able to ask some of those critical questions.

Janine thanks for the direction.

Jetj - yes I am a very google dependent individual (sometimes I even look up time on google :ouch: ) But like you said many times a search would dredge up more garbage link. The keywords need to be more specific. I have been trying in vain for the last few days to find articles on Herceptin's ineffectiveness over time. Thanks to you, my searches are turning up some useful hits.

Here's one I just found (though most of you might already know and have already experienced) :
http://www.mamm.com/highlights.php?&qba ... =1&qpage=3

I hope I can post external links here.

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Postby Janine » Tue Feb 24, 2009 10:37 pm

Xanadu, have you tried checking the ?
You may find some answers there or you can ask other members via their bulletin board.
It is a good source of info for HER2+ women.

(AI = aromatase inhibitor, like femara)

:hugs:
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Postby Janette » Tue Feb 24, 2009 10:37 pm

AI is Aromatase Inhibitors like Femara and Arimidex (anti-hormone treatment).

Xanadu, the internet is a great source of information, I google to get information about most things. Mind you not all sites are as reliable for information.

I wish you and your loved one the best. :hugs:
Last edited by Janette on Tue Feb 24, 2009 10:38 pm, edited 1 time in total.
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xanadu
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Postby xanadu » Tue Feb 24, 2009 10:07 pm

We have tried talking to him - he doesn't go into a lot of discussion of the finer details. Just tells the treatment line. As the treatment s done overseas, getting answers all the time gets a bit difficult.

By the way - what is AI?

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Postby cheryl » Tue Feb 24, 2009 9:55 pm

try talking to your mum's oncologist, they should be able to give you answers to your questions.

the AI's also stopped working for me after a certain period of time, my bccr is hormonal
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Postby xanadu » Tue Feb 24, 2009 9:50 pm

Belinda, Cheryl - thank you so very much for replying. Both of you have given some direct answers and pathways which my days of research couldn't turn up.

However, the answers breed some more questions. Critical and disturbing. Where can I learn more about this?

Thank you again for the answers and the support.

Xanadu

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Postby cheryl » Sat Feb 21, 2009 5:43 pm

not to sure, but I think the body/ccr cells does become resistant to chemo treatments. I was on Xeloda for quite a while but had to stop as my ccr was progressing. I had to change chemos.
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Postby Belinda » Sat Feb 21, 2009 2:53 pm

Hi - I think there is some research that Herceptin over time stops working for SOME women. Her 2 cancer is very complex - there are many 'signalling pathways' that tell the cancer to grow and herceptin blocks her2 which is the most important pathway (I have heard it described as being like the amplifier in a multi-channel entertainment system). But for some women the other pathways can still tell the cancer to grow. There is a lot of research going on about how to block all of the pathways. But the imporant thing to remember is that lots of women have now been on herceptin, and some of those have had recurrences that have stayed stable for many years. As you say, it's good news your mum's cancer hasn't spread so there's plenty of reason to be very hopeful that 12 months of herceptin will be of great benefit to her.

It's also worth being aware that there is a huge international trial going on to find the ideal length of treatment, and a couple of studies showing that even 6 weeks of herceptin is of great benefit.

I do't know about femaa - but best wishes to yo and your mum. B
Belinda

Dx 3 Jan 2007, 4x3x3 cm IDC and 2 other tumours 1.5cm each, 6/19+ nodes, ER-, PR-, HER2+, 4 AC, 12 weekly Taxol + herceptin, 30ish rads, Herceptin finished May 08, currently watching a lung nodule.

xanadu
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Mom on Herceptin

Postby xanadu » Sat Feb 21, 2009 1:34 pm

Hello everyone:

I am new to this forum. I am a migrant to Australia and have a loved one with the BAD 'BIG C'.

Last year around July, my mother diagnosed with breast cancer. My home country does not the facilities for proper and prolonged breast cancer treatment. We arranged quickly to have the surgery. She has undergone, chemo, radiation therapy and finally is on Herceptin (every 21 days) and Femera.

Herceptin being the new wonder drug is quite expensive and cannot be administered in my home country. Mom also has a port setup as doctors found her veins inadequate. The price of Herceptin varies from country to country, the margin possibly crossing over 100%. The initial line of treatment is for 52 weeks of herceptin and 5 yrs of Femera. I checked the online brochures for both and that is what is also recommended.

The silver lining here is that the cancer has not spread and her last check-up shows no cancer cells; she has not had much of the negative side effects. The treatment is becoming prohibitive for us in terms of cost. We are pretty much having to face the decision whether to stop the treatment or not. The doctors would not give a clear answer as to when we can stop the medicines and go for a follow-up.

Recently, I heard from a medical professor that eventually Herceptin becomes resistant to the recipient. That is it stops having any effect +ve or -ve. Is this true? Has anyone heard or read anything about it? So far my research has turned up nada.

I would also like to hear from femera and herceptin users. How long have you had to take it? Or are taking it? Is there actually a point where you can stop taking the medicine and go on follow-up?

Would really love to hear from you.

Meanwhile, I am also exploring the site.


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