lyn

Hi there,I have not been posting lately I always seem to run out of time, well where do I start, I am not here to judge, reading some of the responses you have had a roasting, we all have moments when we bash on the key board, some times I have been relieved that what I typed didn't go through but I got it out of my system, but most important we are here to help because we are the best ones to give opinions and advice. I am in Australia and Herceptin wasn't even considered when I wanted it let alone being Food and Drug Approved, so I went straight to Genetech who gave me contacts in Australia and through e-mails my oncologist managed to get the drug, and I am not on any trial, so maybe you should start shopping around for another onc. I have been doing this since 1998 at the age of 44, when I was given at best 2 to 3 years which was a relief because I thought I wasn't going to be around in 2 to 3 weeks and I was ready to cancel the new glasses I had ordered and empty out my wardrobe. I had a very agressive invasive breast cancer with a tumour the size of an orange which had been misdiagnosed in the April, 3 months before, 16 out of 16 lymph glands all positive and not hormone responsive, so I had a radical mastectomy with the chest and pectoral muscles removed, the surgeon just kept cutting until he thought he couldn't see any more or couldn't go any further. I went on AC rads CMF and then had reoccurences in the neck and skin mets and have been having them ever since, so I have had Femara, Taxotere, Xeloda, Aropmasin, Herceptin, Herceptin/Navelbine,Lost count of rads but just finished another 12 on my right neck which turned into just about a 3rd degree burn all while having Herceptin/Taxol/Carboplatin weekly,which I might add is not FDA approved here yet either, the drugs are legal but the combination hasn't been approved but it is working and I noticed a lot of other oncology patients are getting Taxol/carboplatin for other cancers. And I do not know for how long I will need it, I have a daughter 14 1/2 who has been with me every step of the way so she is quite comfortable with the doctors and nurses, laying back in an arm chair waiting for me, and I am scared for her because there was no history of any cancer in my family. My other half and 2 sons tune out to my situation because I always seem to have it under control, one step ahead of the disease. I have just lost my hair again for the 3rd time so I am frustrated and mad at the disease, but what can I do but just keep in touch with this site for new developments, we are 10 years behind other countries. Some of the ladies have had to come off herceptin because of their heart but that doesn't mean that they have to quit, yes Herceptin is a bonus but in the mean time while the drug companies are making plenty of money, tomorrow is another day with the hope of a cure. We all go through what you are going through and believe it or not if I didn't take antidepressants I would be visualising my own funeral every day which is a waste of energy, and the one I am on is not addictive, but having been through heart failure, thyroid disease both which also just about killed me, not to mention putting up with an undetected fractured shoulder,which now requires a reconstruction, the death of my father, his brother, many close friends and all over the last year it would be so easy to just give up but we ladies don't, we all have our own tragedies. Instead I have a Heart Specialist, a orthopeadic specialist, a general physician, my own GP with two young children who lost her own husband to an inoperable brain tumour not so long ago, and in between all of this I am waiting for the all clear on my heart to have my DEIP breast reconstruction, and hopefully I won't need the radiation oncologist again because both the right and left sides of my neck have been cremated, which makes for neck resurfacing in my books, so I hope to gain a new body and hair style out of this and be younger because I have had so many cells killed off and they have all been replaced with new ones. I turn the big 50 this year but I feel robbed of the last 6-7 years but on the bright side my son turns 21 on the same day and I am so pleased I have hung on and I intend hanging on for another 40 years at least, at last I have a wedding to go to this month for a change, so things are looking up. So with many odds stacked against me if I can do it, we will help you do it as well. Just because you do not have the drug yet the fact that you have been tested and can have it still constitutes HER2 support recognition.

Love & Hugs Lyn