MelanieLR

Hi Grammie, I'm not on IRESSA but I am having quite a problem with dry skin from the chemo they have me on. I have been using Aquaphor healing ointment made by Eucerin. It has really helped with the cracking & flaking. Hope it helps. My prayers are with you, Melanie

Glad to hear Lucie will be getting a break. My prayers are with both of you. Melanie

It took about 3 treatments before my hair started falling out. When it did, it was coming out in huge clumps. When I clogged the drain in the tub, I had my husband shave it. I've been using hats of all sorts but I do suggest that your mom get a very soft comfy cap that she can sleep in. My head was freezing while lying in bed till I got one. I had 6 months of chemo & I've been off for 3 weeks now. My hair is starting to come in - about a half inch long - but it's still very thin where I had the gamma knife radiation. I've been told that it might remain that way. At least it seems to be curly now. Maybe with a little curl to it, I can hide the thin spots. It also has come in almost black, I was dirty blonde. What the heck, I've always been adventurous with my hair, this time I don't need dye. Take care, Melanie

I've been off the chemo for 3 weeks now & keep waiting to feel better. As the days go on, I just keep feeling worse. I've done 2 weeks of antibiotics to no avail. Today I called my oncologist & told him that in addition to the coughing, which is severe enough that I have bruises on my abdomen & back, I'm now running a fever of 101. He said it sounds like I might have an infection in my blood. I went for blood tests & a chest x-ray today. Can't wait to get the results from this one. As if I haven't already been through enough. I swear, if they tell me I'm fine & send me home with anti-depressants, I know I'm going to totally lose my mind (any of you who read "My Story" will be laughing right about now). Well anyway, I'll keep you posted of what they find. Thanks to all for your support & encouragement. Melanie

February 2005 I'm starting to feel that strange brain tumor feeling again. I'm aslo feeling quite a bit of new pain in the area of the lungs, digestive system & joints. I have an appointment on 2-21. I guess I'll go ahead & have him do the scans but I really don't think I'll go back on treatment. I've only been off the chemo for a little over a month & I can't see doing it again this soon. Frankly, I don't believe I'm strong enough right now to withstand any more treatment. January 2005 For the a little over 4 years now, I've been trying to find out what is wrong with me. I think it all started when I went to the doctor complaining of shortness of breath & coughing. I was given a chest x-ray & breathing capacity test. I was told that I had a very mild case of asthma & sent home with a prescription for an inhaler. Then there was my undiagnosed "episode" at work. I suddenly felt like I was disconnected, like something in my brain was not transmitting properly. I was confused, dizzy & my speech was slurred. I was taken to the ER where they did a CT scan & told me nothing was wrong. While those three symptoms slowly improved, I was now getting severe headaches. They did another brain CT & again told me nothing was wrong. This time they sent me home with prescriptions for anti-depressants & migrane medication. As I look back on all the complaints I've been to the doctor for in the past 4 years, it astounds me. First of all, I was never the type of person to go to the doctor unless I thought I was dying. Now here I am going to the doctor or for some test every week or two. Anyway, back to the history of my non-diagnosis. Next, I was having feminine hemorraging. I was told that I had severe endemetriosis & many large cysts on my ovaries. I was given a total hysterectomy & told that everything was benign. When I found a lump in my breast, they did a lumpectomy, said I was fine & doubled my anti-depressant. A couple years prior to all this mess, I sustained a rather serious spine injury at work. Since my company had been fighting workman's comp. it was around this point in time that I finally got an approval to have the surgery I needed on my spine. While this injury doesn't have anything to do with the fact that I have cancer, I find it rather ironic that the PET scan shows advanced cancer in the exact location where they were doing the surgery - they didn't see this? I've had numerous lumps, parts & cysts removed & told that they were all benign. I complained that I was having a hard time swallowing, they upped my anti-depressant. I complained that my abdomen was hurting on the lower right. I was told after a CT scan that my parts weren't in the right place & that it was diverticulitis. They did a colonoscopy, removed numerous leisions & said everything was fine. A couple of weeks later, I had to have an emergency appendectomy. Guess what - it was right where it belonged, on the lower right side on my abdomen. Naturally, again they told me the biopsy was negative. One day I felt a pea sized lump on my neck. I set an appointment with my doctor for the following day. When I woke up the morning of the appointment, my pea was now a very large grapefruit. The doctor sent me for a CT scan. I was told that it was some sort of viral infection & sent home with antibiotics. After 2 weeks of taking antibiotics, my grapefruit was now a volleyball. I went back to the doctor & was given a needle biopsy. A week later, I received a call from the specialist who told me it looked "suspicious" for adenocarcenoma. Naturally, I knew that "suspicious" meant I had cancer because there is no way they could identify the specific type of cancer cell if it wasn't there. I called the oncologist who treated my Mother (she passed 9/8/03), & he sent me for CT & PET scans (I can't have MRI's because of an implant I have in my spine). When I had my appointment with him to discuss my scan results, I was told I was in very advanced stage 4 cancer. It is assumed to have started in my lungs with mets to the brain, liver endotracheal space, thyroid, breast & many bone mets including the L4 in my spine. That is exactly where the electrical lead for my spinal implant is attached. There is also cancer truoughout my entire lymph system. At this point I have been through 6 rounds of very aggressive chemotherapy (carboplatin & taxol) & Gamma Knife Radation Surgery. I'm told that I've probably reached my maximum benefit from this chemo. If later scans show new growth, we might be able to try a different mix. I've been off the chemo for 3 weeks now & still waiting & hoping for a point in time when I will feel a little better. Truthfully, if this is as good as it gets, I won't persue alternative chemo. I went through 6 months of agony & I feel no better now that I'm off it than I did while I was on it. Maybe it takes more time but even so, at best the doctor believes that this chemo only bought me 6 months or less. Do I really want to spend more than half the remainder of my life in that kind of misery? May God bless all of you & hold you in His loving arms.

Wow, I've had so many responses to my posting! I want you all to know how much it means to me to have your support & to know that so many people care. Believe it or not, we've both had counseling. I believe that it's true that the husband feels that he should be able to control all that goes on in his domain regardless of the advances we've made in the equal rights arena. Prior to my disability, I was the major bread winner in the family - actually, I still am between the company disability & SSD, & that has always been a bee in his bonnet. Anyway, one of the responses to my initial posting requested that I share more of my experience in my 4 year journey attempting to get a diagnosis. I'm not really sure it will help anyone because I did everything right. When I didn't feel well, I went to the doctor. When I found a lump I went to the doctor. My primary care physician sent me to all the appropriate specialists & for all the appropriate tests. In the end, they simply missed it for 4 years & now I find myself with stage 4 cancer. I will go into more detail in another forum at a later time. I seem to be running out of gas right now. Thanks to all of you for your helpful comments.

After almost 4 years of having every test imaginable, 6 months ago I was finally told that I had stage 4 adenocarcenoma that originated in the Lung. The doctors said that it was very advanced & gave me 2 weeks to live if I didn't start very aggressive chemotherapy immediately & undergo gamma knife radiation surgery on the brain tumors. The disease was pretty much everywhere when they finally found it. For nearly 4 years I was told that I was fine & sent home with anti-depressants. Well, I went through the chemo & the gamma knife. For the past 6 months I've felt worse than I ever have. The doctors told me that at best, the treatments I've been through might have bought me another 6 months. I guess I'll see what my quality of life is for the next few months but frankly at this point, I can't see myself going through any more of the treatments. I'm only 44 & that kind of stinks but I just don't want to spend at least half of the remainder of my life in that kind of misery. My husband is having a real problem dealing with any discussion of my death & rather than being supportive, he's so angry at the cancer that I bear the brunt of his anger. He's not physically abusive but he's just so angry all the time that everything sets off a temper tantrum. I know how difficult it is to watch someone die of this disease. I was a caregiver for my Mother for 8 months as she was passing from the exact same cancer I have. I truly believe that it is harder for the loved ones than for the patient to accept the eventual mortality - at least it was in my experience. I just don't know how to talk to him anymore. I most certainly don't want to spend the remainder of my life being scolded or yelled at. If anyone out there has had similar feelings, please let me know how you dealt with it. Thanks!