Nana Jane

Thank yu all for your responses to my earlier posts. It's been a bad week for bad news that just keeps coming. I finished my 15th radiation treatment Wed only to learn that the "bronchitis" I'd had for the whole 3 weeks of radiation is a recurrence of the lung disease. I think I knew it all along, as the cough was just like the one I had a year ago when I was diagnosed. But going though XRT was all I could handle at the time, and it needed to be done. The skin effects are pretty awful right now. Scalp burned, blistered, itchy beyone words. Even the inside of my ears is swollen, painful and itchy. This should last another week or so and then improve. Of course I have lost all sense of time, so a week could be a year as far as my body feels. They tapered my steroids a bit too quickly, too. Starting yesterday I have had a splitting headache and vomiting. Actually feel as bit better since I increased the decadron earlier today. But sleep? Oh my gosh can I sleep...even it seems in midsentence. Can't concentrate to read, so the soft musis on the CD player is comforting, as are some of the mindless videos and DVDs my 7 year old granddaughter brought me. Friends have hired a dog walker to take Champ out for his daily long walk which has heen a huge relief to me. He knows things are not normal in the house, and is sticking very very close to me. My velcro golden retriever. He is so important to me I can't even thin about returning him the retriever rescue organization. I hope we've got some trips yet to take together. So over the weekend I'm resting, letting my body restore itself a bit, and deciding about chemo. The onc wants to do Alimta startomg next week. Yesterday I was dead set against it. Today, my will to survive is kicking in and I'm sure I'll be ready next week. I keep thinking of the penguins in March of the Penguins..their sole reason for being is to survive. And the conditions are considerably worse than they are for me, so how can I complain? My prayers and healing energy are going out to you all...there is such good spirit and hope on this website. You are amazing. Will keep you posted. Love, Jane

I should be on top of the world tonight as I had my 15th and LAST radiation treatment today. But I feel so crummy, am so tired, nauseated and dull-minded that I just can't feel celebratory. The cough I've had since the day I was diagnosed with brain mets 3 weeks ago has worsened...it's unresponsive to cough suppressants, and it's tiring me out. I had a chest CT today and will find out tomorrow whether I've had a local recurrence during the 3 weeks off Iressa. Of course I expect the worst! Alimta is next on the menu. Has ayone had whole brain radiation? If so, tell me what your side effects were like. In particular, I'm curious as to whether you noticed increased sinus and head congestion. My sinuses feel so full all the time, and my ears, also. No runny nose, no stuffy nose...just major head congestion. The rad onc people didn't tell me it was an expected side effect, but maybe because I'm an oncology nurse they figured I'd know all that. I continue to cry at the drop of a hat and for no special reason. Hopefully that will improve as I come off the steroids. I've also developed mucositis today...that's new. Back of my throat red, some patchy open areas. And all the skin on my head is bright red, painful and itchy! Hard to find hidden pockets of strength right now. At least the radiation is done! Now recovery. Thank you all for your prayers and encouragement. You're an amazingly compassionate, understanding group of people. Love and prayers to you all. Jane

The outpouring of empathy and love from this forum has touched me today. I'm feeling so depleted physically and emotionally, but my inner angel helped me find strength to post my update last night, and today here is a whole host of angels lifting me up. Thank you, thank you. The weather here in Virginia finally cooled a bit today and even though I was slow and weak, I was able to walk my dog in the woods this morning. This seems to be a place for me where I feel God close, and this morning I just cried and cried and let out so much pain and disappointment...it was cleansing and spiritually strengthening. Letting go of control during this past year has been the biggest challenge for me, but I'm relearning that I don't have to do this by myself. Today the rad onc nurses did a wonderful, loving thing for me. They shaved off the remaining wisps of hair on my head that itch and burn so much, and massaged my scalp with a soothing lotion (after my treatment), and sent me home with sheets of a fabulous wound dressing called Vigilon which feels soothing and cooling. It's like a thin layer of cold jello that feels WONDERFUL! What a relief! Funny to look at, but what the heck...I've long since passed caring what my head looks like. Two treatments to go...I'm dragging to the finish line, and then I can rest. There doesn't seem to be enough sleep but it seems like that's all I do. You all are a wonderful support. And I know you know what this is like. Yes, Kasey, (sorry if I didn't spell your name right) I am getting all my treatment at NIH. It really is an amazing place of hope and healing. I knew it as a nurse, but even more so now as a patient. Thank you all for your support. It means the world to me. Jane

I've just begun to read and hear about a possible link between estrogen and non small cell lung CA. I don't know what it's about and wonder if anyone has citations in any journals. Specifically I'm wondering about the link between hormone replacement therapy (long term, >20 years)and the ERPR status on lung cancer tumor cell surfaces. Does anyone know anything about this? Jane

It's been a while since I've posted. Iwas going along hoping and praying that after I finished chemo last November and started on Iressa I would be one of the miracle statistics. I had clean, clean scans all the way up until July 19th 2005 with NED. Not bad for an initial Stage IV diagnosis. I retired from my research nurse position at NIH July 1 and had a grand time. Went to France for 2 weeks and spent some great time with my grandkids. I felt good, strong, and optimistic. Then in July I developed a problem with the hearing in my right ear, feelings of fullness, unable to equalize the pressure. We tried decongestants (no success) and the ENT wanted to start a short course of steroids. I balked at steroids unless it was lifethreatening and pushed really hard for an MRI. Never in the world did I expect what we found - multiple scattered lesions throughout all lobes of my brain...all small and likely not causing symptoms. I was stunned! two days later I started one of 15 whole brain radiation treattments. I have 3 to go. Those of you who have been through it know how awful XRT can be. Fatigue and nausea all over again like chemo. I cry at the drop of a hat, and can sleep most of the day. Today I lost all my hair again and my scalp is red and burned. I feel like a freak again. I hate the steroids that are making me so emotional, and the constant, constant nausea. The biggest concern I have is that I'll be off Iressa for the duration of the treatment, and I'm afraid the systemic control will be gone. I'll start Tarceva later this month, hopefully with similar results. Overall I feel very discouraged and lacking in hope; I'm angry again and don't even know where to direct it. I'm just not ready to die, but am sorely lacking in coping skills, optimism and energy. I'm being a real whiney-baby! Thanks for listening . Jane

Marion - such good news about your scans. I've been on Iressa since November 2004 and will have second set of scans on 4/25 - I'm so hopeful they'll be clear as the ones in January were. I haven't had any loss of appetite, but can relate to the fatigue. Perhaps a nutrition consult via your oncologist could help? Are you have diarrhea? Could be the food is passing through your digestive system so fast you're not absorbing nutrients (can you tell I'm a nurse???). I'm so happy for you. Be strong! Jane

Janet, you asked about thickening of the adrenal gland. I'm really not qualified to make diagnoses...that's the realm of the doctors. But I do know that NSCLC can metastasize to the adrenal glands. Thickening in and of itself isn't necessarily diagnostic; it bears watching. I think we all are pros at imagining the worst possible scenarios when we have troubling information...it can make us crazy! I encourage you to trust your doctors, and be guided by your intuition. If something you're being told just doesn't seem right, question, question, question! I don't mean to be evasive; my expertise in lung cancer comes from personal experience. My specialty area of practice is in prostate cancer research (not a whole lot of help, is it?). I appreciate the good wishes and expressions of caring from everyone. It is wonderful to bring a message of hope.

I am so very happy to bring hopeful good news to you all. I was diagnosed with Stage IV non-small cell lung cancer in July 2004, at the age of 65...never a smoker, no family history, no risk factors. One of those unfortunate statistics. With disease already spread into my bones, I was sure I was looking at a very short life span. My heart was broken, as I still have so much more living to do. I'm a cancer research nurse, and the irony and injustice of the diagnosis overwhelmed me. I don't know why I thought I was so special that I would be exempt from cancer. Wow! have I ever learned from the cancer master! No one is exempt, and we are all special in our own being. And we need each other to get through the dark and frightening times. You all have supported me by sharing your experiences and encouraging me. So now I want to share my good news. After surgery, six months of chemotherapy and 8 weeks on Iressa, I had restaging PET and CT scans done last week, and (miracle of miracles) there was no evidence of disease ANYWHERE in my body. I can hardly believe it, and I'm overjoyed. I will remain on Iressa, as my doctors believe it is what put me into remission and hopefully will hold me there for a good long while. Deep in my heart, I don't believe I'll ever be able to not worry about recurrence, but that's what we all live with, isn't it? And I've learned there are no guarantees in this life, so I will live strong now in the present. (Except I did allow myself to project a future far enough to schedule a trip to France in May, something that's been on my list of "Things I want to do before I die." I'm paying more attention to that list these days. While I don't consider myself to be a religious person, I am deeply spiritual and believe in a power greater than myself (and greater than great medicine) that guides and strengthens me, and has shown me how to open to love and caring that is so abundant in the universe. I wish for all of you that you will be touched in the same way, and in the process you will be healed. So be it, and blessed be. Jane

Thanks, everyone, for sharing your calming words with me. It helps to know I'm not the only one going through this. I took your advice and broke out the Xanax (I forgot I'd had it from when I had surgery...haven't needed it since then), and got through yesterday in better shape. Last night I slept, and today I didn't go to work. I am pushing myself hard, trying to return to "normal." I think normal will never be the same again. I really thought I was ready to go back to work and it surprised me to discover that even the simple aspects of my job seemed complicated because I couldn't focus my brain! I like the idea that whatever is, is...worrying isn't going to change it. That sounds like true acceptance. I'm struggling with that. It helps to hear it said repeatedly. Thanks for being there.

I haven't posted here in several months. The past two days I've become increasingly anxious and am convinced I've got a recurrence of tumor in my right lung. On CT scan at the end of November, at the end of my chemo, I had small residual tumor or scarring. I started on Iressa then and have done well, no side effects. For some reason, these thoughts have been consuming me. My chest feels tight and I have pain in the top of my back along the shoulders (both were present when I was diagnosed in July). I have a mild, infreaquent cough (but that was the reason I had the first chest xray in July). It seems to be all I can think about and it's making me a nervous wreck. My docs are convinced I'm having a good response to Iressa because I have the right gene mutation; I won't be convinced until I see my PET scan which is scheduled for Jan 25. So if anyone has any words of reassurance for me, or encouragement, I would appreciate hearing them so much. I feel as if I'm losing my mind tonight! Thank you so much. Jane

Thanks for sharing about your experiences with this drug. Of course I'm hoping for a miracle (aren't we all), but am hoping that I'll be able to tolerate the drug. Living with the reality of this diagnosis is so very hard. I'm still in the "How did this happen to me?" stage...long way from acceptance. Have a blessed day.

I am so sorry for your loss. May you find comfort in memories of better times. Jane

If anyone has had experience with Iressa, would you be willing to share it? I'm supposed to start it in December when I finish my chemo, and I know there's a wide range of side effects possible. And more importantly, what kind of response did you have? Any information would be appreciated - I'm so anxious about everything these days. Thanks and I wish you all a peaceful day. Jane

Welcome, Melaniesmom...I'm sorry you needed to find us...I'm new to the site, too. I can completely relate to your chest tube discomfort..I had one in for 8 days in the hospital last month. It is a HUGE improvement when it comes out (and it will come out!). And everything Becky told you was true for me, too...you should laugh and cough, even though you don't want to. And the nerve endings (for me) I don't miss...actually my chemo port is implanted in my right upper chest and it's so numb I don't feel a thing when they stick the access needle in for my blood draws and chemo. It's painless, and that's a good thing. Don't be surprised if the the first chemo kicks you hard. Your surgery took a lot out of you, and you're not at 100%. Don't worry..it will get better during the second treatment. Be courageous, laugh every day, hold hands with someone, and remember you're not alone. Jane

Hi everyone...I'm new to this forum. I'm an oncology nurse who was diagnosed with Stage IV NSCLC in July of this year. I'm in the middle of Taxol and Carboplatin therapy, finding it very difficult. Insomnia seems to be a pretty regular aspect of my daily life. Fortunately I am on extended leave of absence during treatment, so have the luxury of time to take care of myself. Today is a good day, but there have been some pretty dark and scary ones along the way, as you all know. I'm learning new skills since switching from nurse to patient: accepting help from others seems to be my biggest challenge. Would love to hear from other nurses or health care professionals in similar circumstances...how do you make the transition?