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View Full Version : Progression on Herceptin - what are our options ?


suem
12-16-2005, 06:45 AM
I am writing for my sister. We are in the UK.

Brief history is she was diagnosed in April 2003 w 5cm tumour, she had 6 x FEC and then a WLE and 3 nodes removed, following a Sentinel node test and 25 radiotherapy sessions, finishing in January 2004. She was tested and Her2-ve, er-ve and pr-ve. Throughout she has taken supplements and followed an organic and dairy free diet - having read Jane Plant's book. Six months later, in July 2004, she felt a swelling in her armpit, but with ultrasound nothing was found. But by September there was a clear recurrence. In November she had further suregry to her axilla, but she had neck nodes and a hot spot in her lung so this was followed by weekly paclitaxol starting December 2004. Testing of her recurrence showed she was Her2+ve so Herceptin was added in February 2005. But the paclitaxol didn't shrink the neck nodes so she was switched to Navelbine in April 2005 continuing the Herceptin. The Nav/Herceptin combination again didn't shrink the neck nodes and her onc advised there was a window in which radio to the neck would be effective, so she stopped the Navelbine and had radiotherapy in July and August 2005, again continuing the Herceptin which she has stayed on. After radiotherapy, her onc recommended either capecitibine (xeloda) or gemcitibine. Scans in May and Sept 2005 showed the lung hot spot had grown to 'multiple nodules'. She decided to take an alternative therapy - systemic photodynamic therapy and not take either chemotherpay. She has just been scanned again and the result is that the lung tumours have doubled in number and size. Her onc has said she must come off Herceptin.

I am exploring the availability of tykerb (lapatinib) I have seen the Pharmexa post but this is Poland which is not near.

We need your help. Should we accept that she comes off Herceptin ? Which is best for lung mets- gemcitibine or capecitibine ? For anyone reading this in the UK, are there 'pro-herceptin oncs' who we could approach ? What else should we be asking ?

Thanks in advance.

Joe
12-16-2005, 09:35 AM
Sue,
Here are several clinical trials which are studying Tykerb (Lapatinib) in the UK.

http://www.clinicaltrials.gov/ct/search;jsessionid=885B43FB0738B92C26F3B6E4375B46DE ?term=lapatinib%2C+united+kingdom

There may be more.

Regards
Joe

Christine MH-UK
12-16-2005, 01:19 PM
I think that Joe's suggestion is probably the best.

If she can't get on those trial, it may be possible to fight for the continuation of herceptin. I vaguely remember that there was a woman in southwest England who had brain mets and other mets and her doctors said that she had to quit herceptin (since it does nothing against brain mets), but she managed to get the PCT to change their mind some how. I think that she was youngish and had a few young children, which always matters in these things.

It is possible to combine xeloda with herceptin, so I am not entirely sure why your sister's oncologist insists on no herceptin.

Lolly
12-18-2005, 11:10 PM
Hi Sue; I do have a friend here in the US who has been on Xeloda/Herceptin for lung mets this past year and is now in remission, NED (No Evidence of Disease). She continues on this combo as the disease is considered to be systemic and recurrence probable. But, she is accepting of this regimen to help stave off recurrence as long as possible. No mention has been made of discontinuing Herceptin, as again the assumption is WITHOUT Herceptin she would most likely have had swifter and possibly more serious mets by now.

I hope you can find a trial for Tykerb that your sister can qualify for, but as Christine MH points out, if that fails, staying on Herceptin with a different chemo seems to be a safer choice.

Best to you and your sister, please keep us posted.

<3 Lolly

al from Canada
12-26-2005, 04:19 PM
Sue,

Many have found very good success with adding NAVELBINE to the mix. ie, herceptin + xeloda + navelbine or without the xeloda.
Good luck,
Al

suem
12-28-2005, 08:38 AM
Thanks to you all who have replied both on this site and by email. My sis is due to see her onc again on Friday so till then ...