[ Post a Response | Breast Cancer Success Stories ]
Posted by Zoe Queen of Hope on 7/3/2005, 4:44 pm take GoOD care ps. I dont have any answers to your questions about the drug I took. I told you all I know. Try contacting Pharmexa at info@pharmexa.com or GlaxoSmithKline.com and ask them. Or better yet tell them to get a move on ...35% of us could benefit from this drug and I want my sisters to have a chance to use it. I've contacted both of these pharm companys but I'm only one voice.
67.32.198.97
I just finished reading the first page of this board and was touch by many of you and what I read. I thought I would post my success story here in case you missed it on the main board so here goes.
I found a lump in my breast in 1997 and immediately contacted a surgeon, who I knew from work and trusted alot. He did a find needle biopsy and told me not to worry as it was just my "lumpy breast". I begged him to take the lump out but he refused. I went back to him several more times and he did more biopsies with the same answer and refusal. Since I trusted him...I believed him...ok so I'm an idiot! In Nov of 2002 the lump started to grow rapidly. I contacted my GP and he got me a mammogram for the next day. I went and the doctor there did a biopsy. The whole time she was shaking her head saying "this doesn't look good". 2 days later she contacted me and told me I definately had BC (ER+,PR+,HER2 ++) and she had set up an appointment with a surgeon for the next day. When I went to that appointment the the doctor (a woman) leaned over her desk, got right in my face, and said "I'm going to cut off your breast or you will die". I thought her "bedside manner" sucked so I told her I wouldn't let her cut my hair and left. I contacted another surgeon for a second opinion and he did a full work-up. He then told me that surgery would be "useless" and that I had 6 months to live "if" I was lucky since it had metasticed to my bones, ovaries, uterus, and kidney. Ok>>>didn't like that answer either so I contacted another doctor..an oncologist..for a third opinion. He told me I could have several years if I did chemo and radiation. That was the best answer so far but he said I had to wait for a month to start chemo as he wanted to put me in a study he was doing. The next day I went to his clinic with my uncle and my sleeping bag and told them I wasn't planning on leaving until I got my chemo started "even if I had to beat up some old lady and steal hers". The nurses all decided I was nuts as no one had ever begged for chemo before but I was really really anxious to get the show on the road and they did indeed give me my first chemo tx that day. I had 9 cycles of Taxotere (IV every 3 weeks) followed by 2 weeks of oral Xeloda. 2 weeks on chemo then a week off. My body hated me for that. My hair fell out. My toenails and fingernails fell off. The skin on the bottom of my feet flaked off until bare muscle was showing through. And my teeth started to fall out. BUT I lived through it..what doesn't kill you makes you stronger!! If God takes you to it he can take you through it!!
At the start of treatment I had 19 tumors. By the end of chemo I was down to 9. I then went back to the death wish surgeon and we discussed it and decided to do a bilateral mastectomy. At the same time..same operation..a second surgeon had agreed to do a total hysterectomy. I decided to do it all at once since the riskiest part of surgery is the anesthesia...go under once and get it all done.
The surgery went well and my insurance company...with their big heart..allowed me to stay in the hospital over night (please note the tongue in cheek here). After the surgery I had 4 tumors that still hadn't responded to chemo and were not operable.
One week after the surgery my left mastectomy incision split wide open and I spent the next year and a half stuffing it twice a day with sterile gauze until it finally healed up. I was so stressed by that I never even noticed the hysterectomy.
A week after the surgery my onclolgist approached me with a ideal of participating in a phase 1 trial for a new drug. Phase 1 is where they see if the drug will kill you or not...not does it work. He said only stage 4 HER-2 positive could get in the trial. Since I fit that description I said ok. What did I have to lose. I took 4 treatments (IM injections) of HER-2 Protein AutoVac, made by Pharmexa in Denmark. There were 50 women world-wide who participated in the phase 1 trial. 10 of these women were from my clinic and my oncologist said that they all did well except 2 who chose to not finish the trial. (I don't know what the results of the trial are as they haven't been published yet and no you can't get the drug here in the USA. Phase 2 trials are suppose to start this year in Hungary and be finished in 2006. GlaxoSmithKline has purchased the right to do a phase 2 trial in this country but as far as I know they haven't set it up yet.
So now we are up to the present. I had a PET Scan done last month and there is NO EVIDENCE of any cancer activity anywhere in my body. My last 4 tumors are gone. I take an aromatase inhibitor once a day and vit E for the hot flashes but those are my only meds. I see the oncologist once every 3 months and I feel great. I'm in the process of setting up surgery to get my breasts replaced. Have finally decided I want saline implants and have had the initial meeting with the plastic surgeon. The only draw back here is that I will have to go back to wearing a shirt when I cut the grass ...lol...it's a lot cooler to just wear shorts and lots of fun watching the neighbors freak out!!. One must have fun were you can!!
Moral of my story>>> NEVER, EVER GIVE UP NO MATTER WHAT THEY TELL YOU. There is always hope, prayer, and the loving support you can find here.
Zoe
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