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Old 04-30-2006, 07:35 AM   #1
A Living Legend
Join Date: Oct 2005
Posts: 235
Smile I just kept writing and ended up with this!!

This seemed to end up as my life story, Joe where would you like it.

Well, I started this nightmare journey in July 1998 when I had my 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 Cervical 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 Cervix 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, cancel the new glasses I had ordered and go and plan a funeral, but as soon as I knew 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, hysteria, hours and hours of down loads, arguing with Oncologists, I was so 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 Histology Report I should have been dead years ago, and that his how we converse, he is now 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 them, do you all remember the SAGA, I had with the nurses in the Oncology Day Unit, Well, they do everything now except throw rose petals when they see 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? 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 membership 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 diving 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, Sjogrenís, Saliva Glands dry up, a nightmare trying to eat anything dry or large pills, Scleroderma, facial atrophy which they keep trying to blame on radiation when in actual fact this along with Trigeminal Neuralgia, which gives you Horner's Syndrome, droopy eye and numb face and neck, so lets try Navelbine, yes the lumps were disappearing over night, I am also taking Aromasin, and 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 happened to be the right side, where I had been telling them since 2003 there was a problem, instead they found another problem, my thyroid was enlarged, and YES, they told themselves they found the problem, no they gave me another 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 5 kilo yes 5 kilo of fluid using a diuretic over night, wonder why I was having trouble breathing, I never know what is life threatening, so how was I supposed to know I was critical, and not expected to live, showed them, not to mention I had Pericarditis after my first NED on AC, , not even a week, that weekend, he said go home and enjoy life 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 trying 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 hallucinations, I had to convince the Nerve Specialist I was seeing in the now, that I had Trigeminal 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 donít', 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 eye 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 of the numb lump until now, so the nerve doctor was excited now, a shame I bailed out of that hospital before I became a specimen. So, my onc always listened to what I had to say so this time I decided that since he had recently t 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 Vader, and of all things, that is what my computer tower looks like. Off the track again, a bit like a 4X4 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 with severe pain, and I 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 avascular necrosis, and I now 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 they 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 cappuccino and a Heart Foundation Muffin, every day, yes, then he would go home and have afternoon tea, a nice fresh Chocolate …clair, followed with his chocolates, he always bought a large Variety Box for the week, and then over the years he was developing dementia so he probably forgot what he 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 different chapter, and I won't even go there, but the Stress it caused!!! So my dadís, 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 I said no, and I said well you are now, he had a RARE, of course White Melanoma, 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 actually had to do, but during the surgery there was what I call a Spill, and that is the correct terminology, minuscule cells attach themselves to the nearest blood vessel, so he then developed lung cancer and he was in so much pain, Boris was able to get him in for immediate radiation at a hospital 100 ks away, this relieved the pain, but he hadn't worked out any chemo, we know better, we are usually forearmed 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 monitored, I have to have the echoes 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 go to the bathroom in the middle of the night, apparently low blood pressure, I bounce off the wall and fracture my collar bone, same side as bung shoulder, so anti-inflammatories , morphine, what spine pain, I don'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 while I am licking my wounds 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. Then 26 weekly doses of Herceptin/Taxol, bald again for the 3rd time. So after we tried Radiation with Xeloda for what I call the mutated inflammatory breast cancer, I was hospitalised with severe burns, I thought more was better so I upped the Xeloda, and just about short I cremated my breast, we then try the oral Cyclophosomides /Xeloda/Herceptin, so 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 impairs Taxanes and Cyclophosomides, not only have I been having Epelim an anticonvulsant while on these regimes but I am also on Neurontin nerve blocker and thankfully it seems acceptable, so since for forever, 1998 it looks like I have had this other drug attack my treatments, I started Herceptin/Gemzar/Taxol/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 was swimming in and that brought my LV down do about 47%, and twice now, my 20 mins in the MRI have been 2 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.

Love & Hugs Lyn

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Old 06-07-2006, 06:00 AM   #2
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Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
Lyn's Picture and Obituary...we miss you Lyn



Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)

" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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