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A Living Legend
Join Date: Oct 2005
Posts: 235
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This seemed to end up as my life story, Joe where u Like
Well, I started this nightmare journey in July 1998 when I had my very very radical mastectomy, and I always remember the words of my friend when she went to have a breast examination, she said to the doc, I had Cerival Cancer when I had my last child, he said no you have Cervical Cancer, stunned like being hit in the face with a frozen fish, he said as long as you have a Cervex you have Cervical Cancer, so now she has to be extra careful with her PAP smear tests. Anyway, I was given 2-3 years at best, you are not kidding that was the best news I had, I was expecting to go home sort out my clothes, canclel the new glasses I had ordered and go and plan a funeral, but as soon as I new I had at least that amount of time, it was eyes wide open you have 2 whole years to get rid of it, so there my journey began, and it has been one hell of a ride since then, tears, joys, histeria, hours and hours of down loads, arguing with Oncologists, I was soooooo, lucky the one I got at the time I have only just worked out, was 33, he was younger than my oldest son, and I have had to train him the Herceptin Way, he is amazed how come I am still alive, he said according to my Histololy Report I should have been dead years ago, and that his how we converse, he his head of Oncology of my, yes my Hospital as well as 2 others and he tells his staff to give me what I want when I want, and his other comment is, she knows everything and everyone, and believe it or not they jump when he tells thems, do you all remember the SAGA, I had with the nurses in the Oncology Day Unit, Well, the do everything now except throw rose petals when they se me coming, and you all know I am not a bully, and it had to be bad for me to complain, but I see in their faces, Yeah, she is in denial, she is on the way out, so I beat them to it, I say no, I am not in denial, they just moved the Goal Post and Raised the Bar, and I am "Still Standing" well with a walking stick, but aren't we all?l As to Herceptin, I have been on that as long as my Onc and I managed to get it off the drug company and we started our own trial you might say, so for as long as this site has been going I have had membeship to our HER2 Forum. As to does it help, like Lolly, I have had lymph Gland and skin mets the whole time, and then it went into the tissue of my other breast, which is a separate primary, so as far as the left side goes, there is NED, and now I have to start again, and hopefully this latest stint, going from the breast to leaning up against the spinal column to actually diveing into my chord and think it is going to take over, and of course it had to do that and it had to be rare. I asked my Onc could it be a mutated form of Inflammatory Breast Cancer, he didn't rule it out, so along the way, I developed a Connective Tissue Disorder, not your everyday one, I had to have the worst, attacking my immune system, this is where your body wants to kill itself as well, sound familiar, so with that I got a bit of Lupus, skin and gland involvement, Sjrogens Saliva Glands dry up, a knightmare trying to eat anythin dry or large pills, Sclerderma, facial atrophy which they keep trying to blame on radiation when in actual fact this along with Trigeminal Neuraligia, which gives you Horner's Syndrom, droppy eye and numb face and neck, so lets try Navelbine, yes the lumps were disappearing over night, I am also taking Aromasin, and what what more lumps and skin, but I was NED, eostrogen blocker stopped need for further radiation, well Xeloda for mets to chest wound area, and it worked, but no, more skin, I give up, Xeloda, letting me down on the skin, but Navelbine working, go straight to the enlarged lymph site, lets add carboplatin, nurse horrified, and onc kinda agreed with her, so I said OK, back to our site, and here is the dosage for Navelbine/Carboplatin/Herceptin, guess who won here, so requested biopsy be HER2 tested. which happend to be the right side, where I had been tellling them since 2003 there was a problem, instead they found another problem, my thyroid was enlarged, and YES, they told themselves thay found the problem, no they gave me anoter one, and enlarged thyroid which they treated in hospital, and gave me heart failure in 3 valves and now a heart problem it was wonderful to find out later that they had told everyone expect my hubby and me I would not be leaving there, I had mets to the lung, Wrong, fluid, they dumped 5kilo yes 5kilo of fluid using a direcic over night, wonder why I was having trouble breathing, I never know what is life threatening, so how was I suppposed to know was critical, and not expected to live, showed them, not to mention I had Pericarditus after my first NED on AC, , not even a week, that weekend, he said go home and enjoy live my bloods and scans were clear, I swear all I had was one glass of wine and one row of chocolate, but on the Sunday, my hubby was tring to stall my mother off and tell her I had gone out, well gone out with a bang actually, anyway I survived that with antibiotics, are where was I, yes Fibromyalgia, aches pains stabbing pains, and even halucinations, I had to convince the Nerve Specialist I was seeing in the now, that I had Trigiminal Neuralgia, all of these conditions I have had to diagnose myself, because your doc is only as good as your own information, so I said "Yes I have" she says "no you dont', there is no pain, well what do you think I take the Neurontin for, then she looked into my eyes, tells me my bung eye is the good I and I have, all together now, HORNER'S SYNDROME" and I explained this was all before the thyroid, and they still couldn't find the cause until now, 3 listened and decided he had just turned 40 he must know something, so I let my Onc choose for a change, and he said to stop the eostrogen blocker to let the cancer cells grow so the chemo has a chance to kill, it, problem was it was supposed to be the breast, not this other lurker, and from the day I stopped the blocker, Aromasin I started to loose the lift in my right arm, and that was because the tumour was on the march, a bit like Darth Veyder, and of all things, that is what my computer tower looks like. off the track again,a bit like 4W4 adventure, or a computer game. Then I went to the shops on 2/02/2003 after chemo, some little darling decided the soft drink was better all over the floor and chocolate isle than in a bottle he/she didn't even pay for, well for 3 months I suffered, and was virtually treated like a hypochondriac, until a MRI was done, and in fact I had fractured my left shoulder humeral head, and no blood supply got to my arm, so I got avascula necrosis, and I need a shoulder replacement, not even a repair, so I have been having Hydrocortisone Needles to pump up my shoulder so I can get pain relief and a little extra use there, so whenever I had a bone scan, wow look at than Bone Mets, Noooooooo, fracture, but they act like I am not even in the room when I say it, so next step, my dear old dad, had been making Essiac Tea religiously since 1998 and convinced he had cured me, well, I had to agree with him, I just use to go for chemo for the social outing, anyways he was a darling for doing it, but he had a massive heart attack waiting for surgery, well you get that when you go to the Mall, you call it, and have a capacciona and a Heart Foundation Muffin, every day, yes, then he would go home and have afternoon tea, a nice fresh Chocolate Eclair, followed with his chocolates, he bought a large Variety Box for the week, and then over the years he was developing dementia so he probably forgot what he had had and probably repeat it, so the heart attack may have been for the best, he may have ended up hooked to machines, he also had an enlarged thyroid and they didn't bother treating it, something to do with my EX brother, changing his Will the week before he died, but he was in the ANZAC parade a mission he was determined to be in for the last year, with all the appropriate medals and blazer, and Beret, so my dad passed, and my mother, a whole defferent chapter, and I won't even go there, but the Stress it caused!!! So my dad's , brother, 10 years younger, came down for the funeral, and I happened to mention that Boris, my onc said you missed the appointment, he was stunned for a moment because he had asked me for a onc for his friend, and he asked me if he had told me and he said no, so I said well you are now, he had a RARE, of course White Melenoma, and Boris was the only one who found it, very deadly but he went through the paces, had a vaccine made and it got rid of it, problem it was just about the size of his whole back when they removed it, I should have known better and told him what he actally had to do, but during the surgery there was what I call a Spill, when miniscual cells attach themselves to the nearest blood vessel, so he developed lung cancer and he was in so much pain, Boris was able to get him in for immediate radiation at a hospital 100ks away, this relieved the pain, but he hadn't worked out any chemo, we know better, we are forarmed with what we want, any ways they didn't tell me and he went home and died in a coma 1 week later, so there are things worse than Breast Cancer. Not finished yet, apart from the fact we all have to have our LV monitered, I have to have the echos for my heart as well, so every 3 months, so heart under control so we think, skip a couple of years here, I get up to got to the bathroom in the middle of the night, apparently low blood pressure, so I bounce off the wall and fracture my collar bone, same side as bung shoulder, so anti-inflammatories , orphin, what spine pain, Idon't have any, wonder why, this thing decides to wrap itself around my spinal chord and take a swim in my cervical fluid, all the why I am licking wonds for where I have been dropping all over the place. Well back again, so I have already had AC rads CMF, and I wasn't eostrogen responsive, and up comes a lump, I was going on Holidays for 2/3 weeks, So by now I have had, AC rads CMF, Femara, Taxotere, Rads, Navelbine, Carboplatin, Herceptin, and working on cleaning up the right side, because touch wood, I am superstitious, it is clean. More rads, along the way it is my birthday, I was 44 when I started, lets have the tubes fixed, no more eostrogen there either, my first son was born on New Years Eve, my second on my birthday, and my daughter came early and I got this extra bundle along the way, but she has grown up with it, so this is her life, and she is at the right age to understand what is going on now. So now I am over the celebration days. So in all after we tried Radiaiton with Xeloda for what I call the mutated inflammatory breast cancer, for which I was hospitalised, I thought more was better so I upped the Xeloda, and just aboout short I cremated my breast we try the oral cyclosphomide/Xeloda/Herceptin, but I just found out that the nerve blocker I have been taking since 1998 to stop the horrible pinching of staples in my chest actually impaires Taxanes and Cyclosphosomies, not only have I been having Epelim a convulsant while on these regimes but I am also on Nerurontin nerve blocker and thankfully it seems acceptable, so since for forever, 1998 it looks like I have had this other drug attack my treatments along the way, so I started Herceptin/Gemzar/Txl/Zometa and I don't think I have completed a round yet, but the two lumps under my arm have gone, and I didn't get them biopsied, I didn't end up getting the biopsy on the fluid my heart is swimming in that brought my LV down do abour 47, and twice now, my 20mins in the MRI have been 20 hours on my back with no breathing problems, So, OK did I forget anything with my chemo/HErceptin brain, this is all from memory, and there is a lot more there as well.
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