Read This and never give up hope, from wone who knows..

Sat Oct 5 21:45:25 2002
Well after a radical mastectomy, removal of pectoral and chest muscle, 16 lymph glands all positive couldn't get a clear margin AC Radiation CMF (day 1 day8), Femara, a portacath inserted, all veins pretty much fried, Taxotere, all for positive lymphs chasing each other around my neck, Xeloda for mets to skin on mastectomy site, Aromasin, and about 70 sessions of radiation, could even be more, over the last 4 years, in remission twice, 4 months the first time, one month the second time, tumor markers CA-15 always under 22 (more than 30 a worry under that normal) I was down to 8 after Taxotere and that lasted a month,.

I have been on Herceptin for 12 months and Navelbine for 6 months, I had a CT on Thursday, no signs of anything tumor markers 17, except for inflammation around surgery site which has never changed so put down to scar tissue, it has taken 4 years but looks like I have the right combination, I never doubted that I wouldn't get it right some day, I can stay on the Herceptin as long as I like but have to wean myself of the Navelbine, my heart function is 65% which isn't bad for the drugs I have had.

I haven't had any real bad side effects through all of the treatments, and each one worked for a short time. My daughter is turning 13 in December and has been there for me the whole time along with the rest of my family and supportive husband. I have taken Essiac for 4 years, obvious not a cure, herbal and homeopathic remedies, lotions and potions, flaxseed oil, visualization, relaxation,1 a day multi vitamin with selenium, liver tonic tablets with milk thistle. I started off with all the fruit and vege juices until I couldn't look at them without gagging especially beetroot, didn't matter because it came back anyway, so next time I ate what I liked and when I liked, I figured I would make my body unhealthy so the cancer cells wouldn't want to live there.

Friends didn't recognize me, I was blown up like a beach ball, no hair twice from all the steriod meds, worked in my favor when I didn't feel like talking to a person I would know when they walked past but didn't recognize me. I told my onc I wanted a drug to cure me, help loose weight and keep my hair.

So on Herceptin and Navelbine, I have gradually dropped all the alternative pills they were costing me a fortune, off the Essiac for a month but back on it now to please my 83 year old dad, he makes it up for me and he is convinced this is the answer, I have been taking anti-depressants for quite a while which are non addictive and help me sleep, that is when the healing takes place in your sleep, NSAID Bruferen, 2 panadol at night with a tablet for the pulling sensation in the chest and just eat sensibly and have a binge now and again, I always keep an antibiotic on hand Keflex and at the first sign of an infection down with the pills.

I had Pericarditus after the finish of the first treatment when I went into remission on the Friday and ended up in the hospital on the Sunday, all the test for heart were fine.

I got an almost 3rd degree burn to my good arm and face taking off a radiator cap, something I have done for over 20 years, but with all the drugs not quite as careful, the day after chemo and had to be bandaged every day for a month but still kept having chemo with the canula inserted in between burns, I don't know how many near misses where stupid drivers have put my life in danger so if I am late for anything I don't rush and sure enough there will be an accident just up the road where I would have been if I had rushed, I don't stress about anything, I do worry sometimes but stress and worry can't fix problems, refuse to not let myself go to sleep at night worrying, I tell myself it will still be there tomorrow to sort out.

Diagnosed by a Professor with an interest in breast cancer that I had inflammatory breast cancer, fast moving ugly aggressive cancer that would spread like a bush fire, and I would be lucky to be around the following year, sure proved him wrong and then to find out he had made his diagnosis on my histology report, didn't ask my onc and apparently the information on it was not sufficient to make such a diagnosis so my family and I have for the last 4 years expected me to drop dead at any time because of his prediction, so it has been a sad and happy 4 years for my whole family, but I feel quite confident now that as a result of the new combo I have got my metabolism back, still got my hair and a result on the CT I expected, but I will never remain complacent about this sneaky evil disease,

I have been extra lucky that all my symptoms over the last 4 years have been obvious and in time to stop it in it's tracks, frustrating and many a tear shed. I am convinced that I was not meant to leave this life as a result of cancer but a pioneer for new treatments, my Onc was at a loss of what to try and it was from one of these sites that I made enquiries about Herceptin, it wasn't available in Australia at that time, he was negative saying I had to be compatible and it's effect on the heart would not be worth the risk, as I expected I was HER+3 the best candidate and then when it came back in the skin on my neck with another yet stubborn lump,

I came up with the Navelbine which is for drug resistant tumors, and while not an approved combo in Australia I got it anyway, and now he has several other patients on this as well with good results. So he leaves my treatments up to me to decide along with all the tests. I will continue to research BC and he has now told me that I will have to give up the Navelbine at some stage, so I told him Herceptin and Navelbine every 3 weeks and a couple of tumor tests along the way and then back on the Aromasin with the Herceptin. While I was waiting for radiation to my neck prior to Herceptin the Aromasin got rid of the lumps but not a stubborn one, so that is my plan and to enjoy life. Good luck ladies and always remain positive and try to have a laugh.