[Lyn]

Hi Deborah, I actually thought that the Methotrexate in the CMF was used for lupus nut was surprised to find out that the Cyclophosphamide is used as well. It was hard to tell during the first chemo if they helped because I was pumped up with the steroids and they make you feel like a race horse with an appetite to match. I had the Herceptin with Carboplatin and it managed to stall my reoccurence and then when Taxol was added it worked. I was told in the beginning that I had a low grade connective tissue disorder and my Titre was only 660 when I had the Anti Nuclear Antibody blood test done, then I could tell when I had a flare up but it never reached that high, my luck another doctor picked up my result and said oh you have Lupus, and I said do I, that was the first thing I asked the doc who did discover what I had, it wasn't until I raised his awareness to that, that he said no but I wasn't a hypochondriac either, my family and friends always thought I was weird, I would be freezing and they would be swimming in the pool sucking on ice blocks, or I would be boiling hot when they were cold, at least I found out I wasn't queer. Then I saw a peadetrician with my daughter because I thought she may have it, and he looked at my blood tests and told me I didn't have Lupus. So until I had problems 2 years back, when my mouth was always dry and other symptons I diagnosed myself with Sjrogens, which was also correct, following that I had heart failure, which I believe was cardiac tamponade, which is fatal, I had 5 kilos of fluid on my lungs where the heart was pumping backwards, but told no, I know better, that was because one of the symptoms of that is to have an underlying cancer and at that stage I was supposed to be NED, turns out I did have an enlarged gland deep in my neck, which made my thyroid stand out and I was diagnosed with Hashimotos then, and they didn't look for anything else at the time, so he put it all together and said I had the Mixed. I read somewhere on the net that it is treated successfully with a drug with a name similar to Miltex, that isn't it of course, I found it while I was using my daughters laptop when my computer crashed so I haven't been able to find it since, I haven't tried real hard but I will. Problem with mine is that I can't take anti-inflammatories because of the heart failure, but I have been taking glucosomine sulphate, flaxseed oil capsules, fish oil capsules and celery seed vitamins, for ages now, but nothing natural works as yet. I do think the cyclophosphamide is doing some good becasue in the mornings I couldn't closed my fingers without it being painful and now I don't notice it as much, I have to think did that hurt or not. I have been feeling nauseas with the oral tablets, I didn't feel bad with the CMF, the AC is of course Adriamycin with Cyclophosphamide and I need steroids for that combination, I just felt flat all the time. As for the hair loss, I have done it 3 times now, so personally I can't recommend either way, all I know is I keep getting it back no matter what I try, and it is starting to wear thin. My daughter said to me tonight, you always look depressed and cranky, I wonder why I told her, I have nausea, my shoulder blade still hasn't been treated, I don't know if the nausea is from the drug or the pain, it is like a migrane when you feel sick, I have to tell the doctors what is wrong with me, then tell them how to fix me, then wait around until they do it, all they while they all drag in the big salaries, I only keep on doing this for the sake of my family and not me, I could quite easily go to sleep and wake up in the here after but my consciencous won't let me leave them to fend for themselves. You know the suffering of this connective tissue thing, it is bad enough having the cancer try and kill us of let alone our own healthy cells having a go as well. Feel free to ask my anything, I have only had gland and skin involvement which has been a blessing, and of course the breasts if you can call them a large gland. Talk to you soon.

Love & Hugs Lyn