[Lyn]

Hi there, speaking from experience here, my HER status has also changed with my last diagnosis, a lower HER result, to me this means that the Herceptin IS DOING ITS JOB, I started out with a very agressive BC in 1998 and started on Herceptin just over 4 years ago now and my reoccurences have been managed with radiaiton and chemo and this latest result to me is that the Herceptin has slowed it up or changed the mutation of the cells. Also speaking from experience I had a worse heart symptom with AC, I was put in hospital with a heart attack and I don't think I am the only one, with the Herceptin my LV fraction has always been above 50% and my reading last week was 58 %. I was also put in hospital with heart failure in 3 valves October 2003 as a result of Thyroid treatment, the drugs they gave me did it and I wasn't supposed to survive, my LV reading at the time was 56% so the Herceptin had no impact on my heart what so ever, I had that much wrong with me they put me in a ward because they didn't want to take up space in the Intensive Care Unit because I was supposed to DIE, yet again, my expirary date was 2002 and with all of my ailments, I shall list them and show this to your Onc, the non believe: OK, Mixed connective tissue disorder, meaning a bit of everything i.e. Lupus/Sjrogens/Sclerederma/Fibromyalgia, Trigeminal Neuralgia, BC both invasive and tumour the size of an orange, radical mastectomy, removed chest and pectoral muscles down to the rib cage, 16 glands all positive no clear margin and not hormone responsive, then we have Hashimotos Thyroid, Chronic heart failure, left mitral valve and 2 others, fractured left shoulder with collapsed humeral head caused by avascular necrosis caused by doctors not picking it up, nothing to do with bone cancer which I do not have, now my right shoulder blade (scapula) has nerves dieing so I am loosing the use of the lift in my right arm, this came about and since I fell 4 weeks ago re fracturing my left shoulder, and from Low blood pressure from the medicaiton that strengthens my heart from the Thyroid treatment, nothing what so ever to do with Herceptin. I recommenced on Herceptin, after my stay in hospital with heart failure, the week I was out. Out of all this I am one of the lucky ones because my Onc is opened minded and he said it is a miracle I am still alive so I must know what I am doing, he has just turned 40 so at least he won't retire on me but he has been approached to head a private hospital in the Bahamas with a very lucrative package but thankfully he does his job for the right reasons and not for the dollars. I also have peripheral neuropothy in the feet and sometimes in the finger tips from the Taxol, I have had AC rads CMF, Taxotere, more rads, Femara more rads, Hercptin, Xeloda, Carboplatin, Navelbine, Taxol/carbo/herceptin, Xeloda/rads and now Herceptin/Xeloda/cyclosphomide, I have had over 100 sessions of radiation, all of this non stop since 1998, I tell everyone if they made car tyres out of me you would never need to replace them, I am in a lot of pain with my shoulders and neck, these have given me more grief than any of my cancer treatments, and if anything the drugs I have to take for relief are far worse for my heart than Herceptin. I am now 51 so I am not a chicken any more, but things keep getting thrown at me and I keep on getting back up, forgot to add chronic depression to that list of ailments, mainly due to pain and the negative attitude of some of the doctors I come up against. Keep up the fight. Hope this gives you a clearer picture of the dangers of other drugs, also took Aromasin which blocked the eostrogen, and it sure did that I had to use an eostrogen cream to get a normal PAP smear reading, there is probably more wrong with me but sometimes I get CHEMO brain and don't remember all.


Love & Hugs Lyn