Making Choices

[Brony]

Hi. I feel stuck between a rock and a hard place as I am sure many of you have in the past. I am living in Australia and the only way here for me to get onto tykerb is by doing an EAP trial. The problem I have with the trial is that I have to have take taxane to get on it. Have any of you taken these drugs? To be honest it doesn't make sense for me to have to take this toxic drug to get on to a less toxic and hopefully more effective drug. I would be prepared to take out loans to pay for tykerb at this stage. One of the problems with that is that it is not available yet here in OZ without going on trial. Do any of you know how I might get it through the States or have any suggestions. Cheers, Brony

[OzzieSue]

Hi Brony

I live in Canberra and started on the Tykerb/Xeloda EAP with Dr Jodi Lynch at Sutherland Hospital in Feb.
I did Taxotere/Herceptin from July til Jan this year. I had the Taxotere weekly and didn't have a problem with it, just a few small side effects and also didn't lose my hair, although it thinned quite a bit. But it stopped working for my liver. I was really against chemo but ended up not having a choice as I don't think I would be here now without it. If you do end up have Taxotere push for weekly as it is less toxic.

Have you spoken to Dr Lynch's office (or the other Dr in Sydney whose name escapes me at the moment, from Nth Sydney I think) about the requirements for the EAP?

Sorry, not much help. My Canberra onc suggested Tykerb and contacted Dr Lynch.

Sue

[Lolly]

Hi Brony; I feel for you. You mentioned in your previous post that you are prepared to travel, could you travel to the US to consult with an oncologist here who could prescribe it for you? Since it's shipped directly to the patient once an onc approves it and writes the prescription, possibly you could have your onc there contact an onc here and they could work together on this as one of the problems would also be the prescribing onc maintaining a chart.
Some of the oncs involved in the clinical trials of Tykerb are available for second opinions (a couple of members have consulted with Dr. Pegram for example), and possibly would be willing to work with your onc this way.

[Brony]

Hi Lolly, Thank you so much for taking the time to write to me. I am so in awe at what a beautiful thing you girls have going on this site ad it is good to see that you have done so well on herceptin until now. I have been on it 3 yrs and it too has been a blessing up until now. I am more than happy to travel to the States (what a great excuse for a trip). I am just wondering if there is an oncologist over there who would be prepared to see me. I am sure my oncologist here would give me my charts etc to bring over if need be. He's ok although I am a pretty mad at him this week as he has been promising me tykerb for the last three and a half months and then on Wednesday finally told me I can't get it here in Australia. Do you know of an oncologist I might be able to visit or do you have Dr Pegrams details that I can use. If you would prefer to email me directly my email address is brony@rhythmfactory.com.au. Thank you and all the best! Brony

[Lolly]

Hi; I don't have Dr. Pegram's contact info but here's a link to a thread from this site that was started a couple of months ago when one of our members was asking for ideas on who to see for a consultation. You could "private message" some of these gals for the contact info on the docs they recommend, and Mel Gordon's post mentions he has contact info for Dr. Pegram.

Looking For A Specialist, Please Provide Some Names:
http://her2support.org/vbulletin/showthread.php?t=27484&highlight=pegram

Also, don't know if you've entirely ruled out the EAP trials of Tykerb/Xeloda which I understand are available now in Australia. You mention you are against Taxanes, but Xeloda is not a taxane; here's a bit I copied from Medline about Xeloda:

"...Capecitabine is in a class of drugs known as antimetabolites. Capecitabine resembles a normal cell nutrient needed by cancer cells to grow. The cancer cells take up the capecitabine, which then interferes with their growth..."

So, a start for you, hope this helps.

<3 Lolly