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sistersue2

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  1. Judy, I think I remember you saying one time you had not had a chance to be on Tarceva yet, and wondering if it would work for you. I hope all the best for you. Did you say you had the test for the mutation? I never did have that done, the dr. said I had all the characteristics for the mutation and it was just as easy to try it without testing. But after being on it for about 4 months, I noticed swelling on my sub clavicle lymph nodes and so he switched me back to Alimta. However I still wish I had had the test done. I did get the rash pretty bad on my face after a few days. For a time, the rash area around my nose was pretty raw and very painful. I had to laugh because it reminded me of the old joke "Does your face hurt...I know it's killing me..." You have to laugh about something, right? I used the steroid cream and minocycline. I wished I had gotten the prescriptions first instead of waiting. The moisturizer I ended up liking the most was Eucerin. I used that on my face and had my husband put it on my back periodically. Then I used Cetaphil after I showered. I went through a lot of moisturizer. The rash did seem to respond very quickly to the medication, and abated somewhat, but the skin dryness was a constant frustration. I think the worst of Tarceva for me was I was always cold. I couldn't even walk into the freezer section of the grocery store, it just made me shake to the core. Immodium became my friend, and I had to adjust to that problem which was a big difference from the chemo. Also I had no appetite, I had weight to spare but still it started to worry me, because in spite of feeling hungry, after eating a few bites of anything, I just couldn't finish even my favorite foods. I lost about 20 pounds in that 4 months. I am pulling for you to be a long-term successful user of Tarceva! It is amazing what it can do. Best wishes, Joyce
  2. I love it when someone goes out and kicks cancer's bu**. You have a fabulous day, I think I can see your smile from here. BIG hug, Joyce
  3. sistersue2

    scan results

    I love that stable word. God is good-- may He continue to watch over you and all of us. Hugs, Joyce
  4. sistersue2

    Happy Day!

    Have a fabulous birthday! I love your inspiring story! Joyce
  5. I've been taking Tarceva since June 15. On the 3rd day after I began, I had the rash/acne start. It took about 2 weeks to figure out the right combo of antibiotic gel and Minocyclin, Eucerin and Cethaphil moisturizing lotions to get that under control. I have had maybe 4 episodes of diarrhea that came on suddenly, but were managed with taking Immodium. I have to be very careful in the sun, I need sunscreen everywhere the sun touches, even for a very short time. If I forget and go without, I get red spots that raise up and itch, and some form blisters. I have had one followup xray so far, another one due next week. For me the benefits (Improvement/Stable) have far, far outweighed any side effects. All the best to you and your friend. I'd be happy to email if it would help to have someone to talk to, just PM me.
  6. Hi Max, I would say better to be safe than sorry. I had a somewhat similar symptom, when I would cough hard or sneeze I had a dull pain just to the right of center of my chest. Now I know that it was cancer in my lymph nodes beginning to block my bronchial tubes. In hindsight of course I wish I had pursued it at that moment instead of trying to explain it away. I did have an ultrasound but it didn't show anything, so I know now I should have insisted on a CT scan. That being said, the odds are your situation is likely something totally benign, but it might be reassuring just to know one way or the other. Wishing you the best, Joyce
  7. CXR shows improvement/stable!!!!!!!! Lung is filling more completely, no fluid, no new nodules, scar tissue is clearing away. I gave the dr. a big hug! He said he just picked the medication, Somebody else did the rest. CXR one month from now, continue on Tarceva. Luke 1:37 For with God shall nothing be impossible. Hugs to all, Joyce
  8. I am so sorry your dad got this diagnosis. It sounds like he has been through a lot. But, he hasn't given up has he? Sounds like he is a fighter. I agree with the others who have already replied--keep him hydrated and nourished. Keep him filled up with all kinds of good things, basically follow the food pyramid. You'll have people knocking down your door (and email) with the latest miracle cures, but be careful and be wary. There are things that are PROVEN to work in the medical arena. I am also Stage IV NSLC, did a double chemo Carboplatin and Alimta, plus a biological drug called Avistin. It did wonders for me, and I didn't even get sick enough to vomit. The anti-nausea treatments these days are awesome. You never know what is going to work for each person, and your dad may be one of the fortunate ones. Be strong and don't worry about statistics--we make our own statistics these days. The best to you and your family Joyce
  9. Dear Caren, I'm so sorry about your dad. My dad has been gone for 23 years and I still miss his dear face. But even if I could, I wouldn't call him back to suffer as he was doing with emphysema, it was horrible. I just wanted to say that my husband was diagnosed with prostate cancer 3 years ago. He was Stage IIb (they stage it differently than lung cancer) but anyway he had surgery and he is doing just fine. His PSA levels have stayed near zero and he feels fabulous. Just wanted to give you a bit of hope for your uncle. There is a lot they can do with prostate cancer. Hugs, Joyce
  10. sistersue2

    Joyous

    My email says Sister Sue, but my name is Joyce. My dad always used to call me Sister Sue, like this "Now listen here Sister Sue...." to tease me when I was young. My dad died of emphysema complications in 1985. I still miss him everyday. I am a never smoker aged 55 who has always lived a healthy lifestyle. Married for 30 years to a great guy, Allen. Three children, Miranda age 29, Megann age 25, Ryan age 22. No grandchildren yet, but I am going to fight to stay here until I see them! Anyway I have already posted on here to introduce myself, not knowing if I would remain a permanent resident, not knowing what was happening to me at all after the big diagnosis. But I have received so much comfort and knowledge from your life and cancer experiences, I am feeling more at home and like one of the family. And if anyone can be reassured like I have been by your words, I will feel like my time is well spent. ************ Dec 2007- heartburn and stomach problems after making (and eating alot) of annual Christmas mint sandwiches. Started taking over counter meds. I thought I probably had acid reflux like my brothers, who both have hiatal hernias. Upset subsides for the most part. Trying to be very careful about not eating after 7pm, no caffeine, no chocolate, no peppermint, small meals. Apr 2008- noticed that upon coughing hard or sneezing, I had a dull pain in the middle of my chest, just to the right of center. I thought it was possibly an erosion from acid reflux. May 2008- went on trip of a lifetime to Europe. Determined to see my PCP upon my return if sensation in my chest didn't go away. June 2008- dull pain intermittant upon coughing or sneezing. June 5, 2008- saw PCP. She did blood tests, nothing wrong. Ordered ultrasound, thinking maybe pain was from gall bladder. Ultrasound detected nothing unusual. She advised me to go back on full treatment of Prilosec. Dull pain stopped occurring. October, 2008- started dry cough. Tried over the counter meds, coughing got worse. October 31-saw PCP again. Started me on Advair and Nexium. Dec 2008-cough subsided. Jan 2009-noticed shortness of breath on climbing stairs at home. Feb 10, 2009-saw PCP to report SOB. Did EKG to check heart, heart is "fabulous". Had chest xray, saw huge shadows on right side. Feb 12, 2009- PCP called, told me to schedule CT scan, said radiologist reviewed xray and saw something, fluid or infection. Told me not to look on internet because it would scare me to death. Of course I did anyway. Feb 20, 2009- CT scan Feb 25, 2009- PCP called to inform me of appointment with pulmonologist. She still did not think cancer, but said worst case cancer, best case, an infection. Feb 27, 2009-Saw pulmonologist and reviewed CT scan. Report also showed hiatal hernia. Pretty rough. Nothing about infection, just cancer. Scheduled for bronchoscopy on March 3, results on March 6. March 3, 2009- bronchoscopy. Pulmonologist brought pictures to recovery area, shows right bronchial tubes nearly blocked. No bedside manner--he just states, it is what we thought-cancer. March 6, 2009-My husband and I saw pulmonologist expecting to get results of bronch. Pulmonologist apologizes that lab messed up testing, staining of cells. Must redo bronchoscopy. March 9, 2009-Second bronch. March 10, 2009-PET scan. March 11, 2009- Pulmonologist calls at 7pm to tell me in advance of appt with oncologist that it is NSCLC adenocarcinoma, and it is in my chest, stomach, neck and liver. Didn't sleep at all that night. Definitely won't be seeing that doctor again. March 12, 2009-Met with oncologist. Showed us PET scan, areas lighting up in right lung, lymph nodes in chest, stomach, neck. He tells us that surgery is not an option, he will treat with chemotherapy. He spent 1-1/2 hours with us, diagramming the whole situation and repeating everything 3 times. Explains different chemos, biological Avastin, and thereafter treatment with biological Tarceva. He says we will reassess after 2 years. I really trust and like him from this first appointment. March 20, 2009- First treatment with Carboplatin/Alimta plus Avastin. First received Aloxi and Dexamethazone via IV. Side effects first two nights I felt like something inside my chest was popping. Couldn't sleep. Bit the inside of my mouth. Queasiness on morning of 4 and 5th days. Took Compazine and it went away. I was late to work for 2 days but continued to work each day. Mouth sores were pretty bad. My gums were very sore too. April 10, 2009- second treatment. Advised to take Ativan before bed on first and second nights. It does the trick to help me stay asleep. No mouth sores this time. Queasiness only on 4th and 5th days. April 28, 2009- chest xray May 1, 2009- reviewed xray with onc. Substantial shrinkage. I can actually see my diaphragm instead of a cloud of black. I can now sleep on my side and back without feeling like air is blocked. Third treatment. Same as before. By the 10th day, I feel fabulous. May 21- tomorrow will be 4th treatment, if all looks good, this may be the last treatment. Will see onc at the same time for CBC. CT scan and PET scan scheduled for May 26. Will see onc on June 1st for results. I feel like I have come to terms with my diagnosis, but I am not giving up by any means. I have a lot of faith in my Father in Heaven that he is aware of me and my struggle and is there to help me with my burden. I don't believe this disease will shorten my life by one day of the time he and I agreed upon before I left his presence. I continue to work each day, and being busy is good for me. All the best to all of you.
  11. Sorry I don't know how to respond to questions other than starting another topic. One of you had asked about the reactions to chemo, I really haven't had anything horrible. On the night of the first infusion, I was very wakeful all night, and had nightmares. I bit the inside of my mouth during the night too. I mentioned this to my infusion nurse, who also happens to be my neighbor of 25 years. She told me for the 2nd round to take an Ativan before bed, one of the prescribed anti-nausea meds, even though I wasn't nauseous. She said the Aloxi and Dexamethazone that I was given via IV prior to the chemo caused the problem, and since the Ativan is also an anti-anxiety med, it would counteract the steroid. Anyway, that worked like a charm so now I take one of those for the first two nights after infusion. I should mention that this neighbor is also a breast cancer survivor, she went through all this herself five years ago. So she knows the drill from both sides. Apart from that one bad episode, I have had some queasiness each morning on days 4 and 5, so I take a Compazine to head off the nausea which causes me to go back to bed and conk out. I'm usually always late for work on days 4 and 5, but like I mentioned my boss is great about everything. Then it seems like by day 6, I am back to normal again. Or should I say, my new normal. I go for a walk everyday, about 1/2 hour. I'm pretty slow but my breathing is improving so I think I can speed it up a little as time goes on. I drink all the water I can, plus grape juice and lots of milk. I eat a little protein between meals so I don't feel queasy. I avoid sugar and added fats, plus red meat. But for the most part, I haven't changed my diet at all, I have always been a vegetable/fruit eater anyway. Thanks for reading this and adding any advice you might have.
  12. I am glad to find this site, all the posts are very helpful. I am a non-smoking woman, age 55. I was diagnosed with Stage IV NSCLC adenocarcinoma on March 12, 2009. It started in my right lung and has spread to the lymph nodes in my chest, stomach and neck. The symptoms began with shortness of breath, but I thought I was just having problems with acid reflux. I couldn't sleep on my side or flat on my back any longer, only propped up on pillows. I saw my primary care doctor for the SOB, she had a chest xray done. After that I had a CT scan and 2 bronchoscopies (the lab messed up the results of the 1st one--not fun. My CT scan did show a hiatal hernia, so I had that going on at the same time, it may have distracted me somewhat from the symptoms of LC. I started a regimen of carboplatin/alimta plus avistin on March 20, I have just completed my third round. I just had a chest xray on April 28, there is a huge improvement on the way the lymph nodes look and the disease in the lower lobe. My breathing is better, I can sleep on my side now and do a nice walk without feeling SOB. I have never smoked or been around smokers much. This diagnosis was a complete shock. But I am thankful for my good health, it seems it is good to go into this healthy as possible. I am trying to be hopeful. Some days are better than others. I am still working, everyone at my office is very helpful and tries to be aware of things that may cause problems for me. I have very good insurance and hope to keep that going by staying on the job as long as possible, previously I had not planned to retire until 65. A lot of you have mentioned keeping a good attitude and not being so fearful. I hope I get to that point soon but I am struggling. All the best to all of you.
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