What does everyone think?

Lyn · 12-08-2005, 05:38 AM

Hi all, well I saw my onc and he isn't bothered about seeing where I am at, instead he has arranged for me to see an Onc one of his friends at our big hospital who is doing a trial on a Drug discovered here in Melbourne Australia, so far only 8 on trial in WHOLE WORLD, and has to be a solid tumour, but the big BUT is I have to stop everything and that means the Herceptin as well, I have been on it for 4 years now and it has been my safety net, but then if it can get us closer to an answer to this demon it would be worth it. I am to see him on 22nd of this month and have to be drug free for 4 weeks before starting a 24 hour infusion once a month for not sure how long. So what does everyone think?

Love & Hugs from the Dinosaur

Barbara H. · 12-08-2005, 06:58 AM

First of all I would say that you are one brave woman fighting for yourself as well as paving the road for all of us. As Gina has said it is not the end of the World to go off of Herceptin for a while because it stays in your body. I would just ask a lot of questions and make sure that you can discontinue the drug if you feel it is not working for you.
Good luck and thank you for sharing your journey.
Barbara H.

mts · 12-08-2005, 02:01 PM

That is a difficult choice... but if the other drug shows promise, well worth it. Trials really monitor you too... Ask where the other 7 are within the trial and if you could talk to them... What is the drug?
Maria

lindaw · 12-08-2005, 02:32 PM

Dear Lyn

You have had lots of Herceptin and it should help. Scarey though to go off it I know. Remember I had to make a choice 0 different ( xeloda and drug or just xeloda- I got the just xeloda arm and dropped off the trail to stay on herceptin).
On the other hand i have looked at that trial ( I think it is that one ) the other day and would like to participate but i dont have a sold tumou( I did in Feb)only skin mets which are giving me hell.
I think the drug looked good but it is your decision.
Also I remember you saying you had xeloda and radiation. Som,eone has had this 2ce for skin mets and worked but I think yours didn't. What chemo are you on now for skin mets?
love
linda

CLTann · 12-08-2005, 02:47 PM

My frank and honest advice is not to join the trial. In most trials, half of the recruits get placebo. Therefore, you have a 50% chance of having no medication at all for the length of the study. As long as you have been under the protection of Herceptin, why should you participate in a new trial? Of course, you may feel that the new drug may work better. But how can one get better than disease free?

Ann

Lolly · 12-08-2005, 09:15 PM

"...In most trials, half of the recruits get placebo. Therefore, you have a 50% chance of having no medication at all for the length of the study..."

Sorry but that is incorrect information!!! It depends on the PHASE of the trial. While true that Phase III trials usually involve a control group which either gets the gold standard treatment or in some cases a placebo (but this is usually not the case when a trial includes volunteers with active disease, such as the one Lyn is considering), Phase I and II trials are determining first the safety of the new drug (Phase I) and then the optimum dosage (Phase II).

So Lyn, if it were me with ACTIVE DISEASE such as you have, I would find out if it's Phase I or II, where you would be assured of getting the new drug. Also, request a copy of the Consent Form; University of Washington provided one for me to study BEFORE I went up for my Consent Conference, so that I was familiar with all the pros and cons of the drug and trial info. It's a requirement that all the info is revealed in the Consent Form so that a volunteer is fully informed.

As one of the other girls said, ask a lot of questions, including making sure you have the option of opting out at any time if you feel the drug isn't working for you and you want to go back on Herceptin.

Otherwise, girl, only you can make this decision. It's a bit scary for sure, but keep us posted on what you find out at your consultation.

<3 Lolly

Lyn · 12-10-2005, 07:00 PM

Thanks all, we do things differently here in Oz, I will be getting the drug but I will ask a lot of questions, it would be out of character for me not to ask and TELL them of course. I am on the Xeloda/Cyclophosomide for both the skin mets and tumour, so I still don't even know if there is anything there to treat yet, but me being me it wouldn't be long before there would be. I think my onc wants me to do it is because I always have a good response to chemo initially with each drug but it never lasts for long, I am more anxious about my right arm not being able to lift and the Big C is taking a back seat. I will keep you all informed.

Love & Hugs Lyn

al from Canada · 12-10-2005, 09:34 PM

Dear Lyn,

There are a number of situations were I would consider a clinical trial, such as;
1. if I had developed a resistance to other chemos and / or herceptin,
2. if I had metastatic disease that was stable and
3. if it were a targetted therapy that was concurrent with herceptin.

I would not go into the trial if I had active disease that was responding to treatment or if I were on a proven therapy such as herceptin nd asked to abandon it for the experimental drug. I would keep in mind that HER2 disease is VERY specific and requires VERY targetted therapies to get a positive response. I would also consider treatments for the other over-expressed pathways which are bound to HER2 over-expression, suchas as P13K inhibitors, HER1 inhibitors, COX2 inhibitors and VEGF inhibitors.
Regards,
Al