Lauren
07-06-2004, 11:44 AM
I completely understand your frustration. As Rozebud mentioned, I entered a clinical trial and I did not get randomized into the herceptin arm either. My doctor had not ever given herceptin out trial prviously and he was not offering it to me at all.
There were other parts of the trial that made me uncomfortable, however.... it called for Taxol instead of taxotere and at the time there was some research that taxotere was a better option for the er/pr+ group, as Taxol had been found to be more effective for er/pr-. Also, the trial specified Tamoxifen must be taken, if er/pr+. I had read early studies at the time suggesting (not proven - although there is more supporting data on this today) that tamoxifen may not be effective for her2. Had I gotten into the herceptin arm, I would have lived with the other conditions because it was more important to me to get the herceptin. But since I didn't get it, I decided that I wasn't going to continue on a path I didn't AT ALL agree with, so I contacted Genentech and had some serious discussions with my doctor. I would have moved or traveled or spent my life savings if I had to. We started on the AC and I stayed in the trial at that point - considering I would have taken that step regardless - and we used that time to research, discuss and (for me) soul search. By the time AC was over and several conversation had passed (including one very emotional plea), he had finally agreed to give it to me - and since I was no longer in the trial, he also agreed to give me taxotere, lupron and arimidex.
I do not feel at all bad about dropping out of the trial. They are voluntary for a reason and while I am extremely grateful to those who contributed to research before me, there was no way I could have gone forward, given what I had learned and researched. I knew it wasn't proven and I knew it had risks, but I knew in my gut that it was for me. This is why we educate ourselves - so we can make good choices for ourselves.
The vaccine trials (for early stage) were not available when I was diagnosed and if I were faced with this today, I might have selected to opt out and pursue that route instead. You should look into those options. There is a trial in Pennsylvania for early stage that Christine has posted about. I think it is only 3 or 4 shots so it is quite doable from out of town - if you are willing to travel.
I know that your situation is tough as you have not found a doctor willing to give it to you off trial in Canada... but I would do what Rozebud suggested and take the MD Andersen results with you to see other oncs or call Genentech if you want to pursue this. Perhaps you can find an onc in the states.
These choices are yours and you should not feel like you have to stay in the trial if you don't want to. Not everyone wants to get herceptin for early stage as many are afraid of the side effects and long term unknowns, so there will be others grateful to be in your shoes.
I wish you all the best as you move forward. I understand your frustration and I feel for you. If I can help in any way, please e-mail me.
Love and hugs,
Lauren
PS - I did feel bad about not contributing to research so I sought out other trials that I might qualify for and I found a bone density study for pre-menopausal women who had breast cancer and are now menopausal. It is testing the effect of taking a bone strengthener to prevent bone loss before it happens. It is double blind so I have no idea which arm I'm in - which in this case is fine with me. I take the pill once a week and it does make me sick (GI problems for 2 days following) but they do blood tests and such and it's not hurting me (as far as we know) so I'm going to stick it out for the 2 years of the trial.
There were other parts of the trial that made me uncomfortable, however.... it called for Taxol instead of taxotere and at the time there was some research that taxotere was a better option for the er/pr+ group, as Taxol had been found to be more effective for er/pr-. Also, the trial specified Tamoxifen must be taken, if er/pr+. I had read early studies at the time suggesting (not proven - although there is more supporting data on this today) that tamoxifen may not be effective for her2. Had I gotten into the herceptin arm, I would have lived with the other conditions because it was more important to me to get the herceptin. But since I didn't get it, I decided that I wasn't going to continue on a path I didn't AT ALL agree with, so I contacted Genentech and had some serious discussions with my doctor. I would have moved or traveled or spent my life savings if I had to. We started on the AC and I stayed in the trial at that point - considering I would have taken that step regardless - and we used that time to research, discuss and (for me) soul search. By the time AC was over and several conversation had passed (including one very emotional plea), he had finally agreed to give it to me - and since I was no longer in the trial, he also agreed to give me taxotere, lupron and arimidex.
I do not feel at all bad about dropping out of the trial. They are voluntary for a reason and while I am extremely grateful to those who contributed to research before me, there was no way I could have gone forward, given what I had learned and researched. I knew it wasn't proven and I knew it had risks, but I knew in my gut that it was for me. This is why we educate ourselves - so we can make good choices for ourselves.
The vaccine trials (for early stage) were not available when I was diagnosed and if I were faced with this today, I might have selected to opt out and pursue that route instead. You should look into those options. There is a trial in Pennsylvania for early stage that Christine has posted about. I think it is only 3 or 4 shots so it is quite doable from out of town - if you are willing to travel.
I know that your situation is tough as you have not found a doctor willing to give it to you off trial in Canada... but I would do what Rozebud suggested and take the MD Andersen results with you to see other oncs or call Genentech if you want to pursue this. Perhaps you can find an onc in the states.
These choices are yours and you should not feel like you have to stay in the trial if you don't want to. Not everyone wants to get herceptin for early stage as many are afraid of the side effects and long term unknowns, so there will be others grateful to be in your shoes.
I wish you all the best as you move forward. I understand your frustration and I feel for you. If I can help in any way, please e-mail me.
Love and hugs,
Lauren
PS - I did feel bad about not contributing to research so I sought out other trials that I might qualify for and I found a bone density study for pre-menopausal women who had breast cancer and are now menopausal. It is testing the effect of taking a bone strengthener to prevent bone loss before it happens. It is double blind so I have no idea which arm I'm in - which in this case is fine with me. I take the pill once a week and it does make me sick (GI problems for 2 days following) but they do blood tests and such and it's not hurting me (as far as we know) so I'm going to stick it out for the 2 years of the trial.