Kelly

I was just awful on Decadron, I had to take it for four days during chemo (day of and three days after). I couldn't sleep with it, but it is a powerful anti-inflammatory and really helped with my breathing and coughing. I also take Ativan for calming and Hycodan cough syrup now and feel like my old self! If your dad has a bad cough, ask about Hycodan. No point suffering needlessly.

I'm so happy for you Judy! Wonderful news! Kelly

Hi Kelly, I'm sorry to hear about your Mother's passing, Kelly. Lung cancer is an awful disease and some people do go very quickly, mainly because it is discovered so late. She is at peace now. My thoughts and prayers are with you and your family.

Did your radiation oncologist have you take liquid Sulcrate Plus a few days before you started radiation, four times daily during the whole radiation session and for a few weeks after? I had two cancerous lymph nodes wrapped around my windpipe and the tumor in the lung was near there also, so they expected trouble with the esophogus. I still had some trouble, feeling a "lump" when swallowing and was basically on a liquid diet by the end, but could eat soupy things like porridge with milk, yogurt, ice cream, smoothies, etc. I found it took a few months after radiation for the whole digestive area to return to normal. And I still avoid spicy foods, tomatoes, etc. and heavy foods. Any any foods that caused gas (at one point everything seemed to) because it seemed to get stuck in my stomach and I found it hard to burp it up and it was painful. Eventually, after trying every antacid-type over-the-counter remedy, I found that drinking a glass of warm water with a half teaspoon of baking soda produced the big burps I needed! It worked for me, but definitely check with your doctor before trying this! I also found I needed to sleep with three big pillows to keep my upper body high. I often thought of sleeping upright in the Lazy-boy chair, but never did. Anyway, it takes time to heal, but heal it does and ask your doctor for help and advice to see you through this.

Hi folks! Thanks for all the info! I'll report back once I've seen the doc in April. I might be reading things wrong, but it seems that Squamous doesn't have as many options as other types of LC after the first line. It'll be interesting to see what they propose. Kelly

Hi Sandra, Ned, and Patti! Thanks for replying! I think there was lots of good news in the report, in that I am very happy, of course, that it hasn't spread! Ned, I'll ask about the cavitation, small lung collapse and small pleural effusion. And, Patti, thanks for the reassurance about the small pleural effusion. Hope mine stays like yours! One more question. I know it is hard to be specific and nobody is a mindreader, but does anybody know which chemos are often used as second-line? I'd like to read up of them before I meet with the doctor. Again, thanks everybody! Kelly

Hi everybody! It's been a long time since I wrote here about me but have been lurking and reading and sometimes popping in! Thank you to all the people who took time to tell their stories and to all the people who regularly reply. You give us all hope, lurkers like me, too! I finally feel like I have news where I need advice. To recap, I am a female and was diagnosed with NSCLC Stage IIIA Squamous at age 51 (am now 52) and began treatment with Cisplatin and Vinorelbine (four rounds) concurrent with 33 sessions of radiation. My LC tumor was 10 cm by the time treatment started (I live in Ontario, Canada, near Toronto, and the health system is slow moving here) and is in the right lung, high up, and I also had two lymph nodes infected that were described as "bulky" by the surgeon who did the Mediastinoscopy and Bronchoscopy and were wrapped around the lower main windpipe. Since the cancer had broken out of the lungs, the surgeon said I was ineligible for surgery. All other tests were clear: brain scan, bone scan. So I started treatment the last week of July 2008 and it ended in mid-October 2008. My one huge regret is that, at the end of the treatment my red blood cells were so low I could barely move yet didn't get a blood transfusion. (Long story.) That meant that it wasn't until mid-December that I was starting to feel better as it takes that long for your bone marrow to reproduce red blood cells. At the same time, mid-December, I had a followup CT scan and all they told me was that the tumor was smaller (5 cm) and they weren't sure whether it was a empty sack of scar tissue or if there was still some cancer there. I would have to wait a for a few months for another CT scan to see what was going on. A CT scan was scheduled for March 16, 2009, yesterday. Prior to that, I went to see the radiology oncologist on Feb.23 because I was having pain in my right ribs. He ordered a chest x-ray and a bone scan. He had the results the next day and told me that the bone scan was good, but that the chest x-ray showed a small lung collapse in the middle of the right lung. He said it was small, so they wouldn't treat it and it should heal by itself. Also, around that time I was having headaches everyday, for five to 10 minutes a day, about three or four times a day, so he ordered a brain scan. It came back good or clear on March 10, 2009. (What is the right terminology to describe a good or clear scan?) Then I had my CT scan to the chest and abdomen done yesterday. I was able to get a copy of the written report from my family doctor's nurse. (Both my radiology oncologist and medical oncologist (chemo doc) are on holidays and my next appointment (to see the radiology oncologist) is Tuesday, April 7. So, according to the written report things aren't so great. I'm just going to type it out here. "CT chest and upper abdomen with Iv contrast. Comparison is made with the previous examinations, including the most recent study dated 12/11/2008. There was a problem with the contrast injection and suboptimal contrast-enhanced images have been obtained. No abnormality is seen in the left lung. On the right side the mass has increased in size and now measures 5 cm x 6.7 cm compared to about 4.3 x4.7 cm at its broadest dimensions on the previous examination. Cavitation was present within the mass on the previous examination and this is no longer evident. There is a new small right pleural effusion. There is no evidence of pericardial effusion or left pleural effusion. Lymphadenopathy in the mediastinum is unchanged compared to 12/11/2008/ No abnormality is seen in the liver or adrenal glands. The spleen, pancreas and kidneys are unremarkable. The abdominal aorta is not aneurysmal. There is no ascites or evidence of mass or lymph node enlargement in the upper abdomen. Conclusion: Interval enlargement of right lung mass with development of right pleural effusion. No other change since 12/11/08." The end of the report. So, I suppose at my next appointment on April 7 they'll tell me I need to get back on chemo? And what about that small pleural effusion? (And remember the chest x-ray on February 23 showed a small area of collapsed lung?) Personally, I feel fine. SOB going up stairs is my mainstay symptom and I have been taking Hycodan syrup for cough. Any insights or advice for when I meet with the doctor on April 7th would be appreciated. Sorry this is so long. And, again, thanks to everyone who makes this such a remarkable site! You're all always in my thoughts and prayers. Kelly

Carole was a great lady and inspired many people with the joy she took in life. May she rest in peace.

Hello everyone! It's been a long time since I posted; I hope everybody has been well. I was going to post earlier this week, saying that my treatment for Stage IIIa NSCLC was completed (33 radiation and chemo with cisplatin and vinorelbine) and tell all about it (it went very well, considering) but I'm sure I have low red blood cells and am just so tired, racing heart sometimes, etc. and of course it's the weekend. So my summary of my treatment will have to wait (I go back in Dec. for CAT scan to see if treatment worked) but my question is: Do low red blood cell counts get better on its own over time or do I need to go the emergency room and get a transfusion? I don't like the thought of going to emergency because of all the germs (I am also at the low white cell stage). Anyway, how did you (anybody?) deal with low red cell counts? Thanks for any advice, Kelly

Hi Marcia, Debbie, SandraL, and everybody! You're right, it turns out that it was the Decadron steroid I took twice a day for four days for nausea with the "big" chemo infusion - Cisplatin and Vinorelbine that caused me to be so full of energy for days and then the crash into exhaustion. I talked to the doctor today and he said that since I have such a strong reaction to it (full of energy, unable to sleep, flushed face and neck and then the crash into exhaustion) that on the next big chemo day I'll only take it for two days instead of four. So, hopefully it won't be as intense as last time. Today, I just get Vinorelbine, then next week off chemo then the cycle begins again. Radiation every day. I'm developing a mouth sore on my tongue and have started rinsing with salt water. Other than that and dealing with constipation (Vinorelbine is bad for that), I'm getting into a routine and trying to figure out what foods to eat when, to say nothing of trying to juggle all the various meds! All in all, so far not bad. Kelly

Hi R, The chemo I'm on is Cisplatin and Vinorelbine. I went back to sleep this morning and slept about three hours and my temp is normal now, so won't go to the doctor now. If it climbs again to 100, then I will. I'm luck in that there is a clinic here that will see patients on Saturday and Sundays without an eight hour wait in the emergency room at the hospital! Right now I'm feeling good. Still coughing but I always do. Kelly

Hi everybody! Well, I made it through my first week of chemo and radiation! At least I know the routine now, but I need to make up a meds schedule - so much medication to take at different times. Overall, the first week went well. I have no major symptoms as of yet, such as vomiting, mouth sores, burned esophogus, etc. My major symptom so far is insomnia. I think it is caused by the chemo. I'm wide awake after three or four hours and full of energy. It's bizarre. As the week went on and the chemo left my body, I was able to take short naps and slept maybe five hours. I read an article online that said that lung cancer patients tend to experience insomnia more than other cancer patients and that researchers don't know why. All I know is that I felt full of energy, probably the way a bipolar person feels. I can see getting very fatigued if this waking up after three or fours continues. And, whoever it was who said to stay on top of constipation was right on target. Thanks for the warning. I had never had problems with that before and immediately got prescriptions for that the day after my first chemo. Also, I get a flushed face and neck after chemo. They told me that was a side effect and they would monitor it. Then last night I woke up shivering terribly and it went away after a few hours and I have a temp of 100 and am coughing. So, I better go get some antibiotics this morning at the clinic. Temps gone down to normal now. But better get it checked out. Anyway, just wanted to say hi and let you all know how the first week went! Hope all is well with everybody! Kelly

Thanks, Judy! I read your history, and wow, I can't believe what everybody here has gone through. Your case seemed particularly hard to diagnose. I was happy to read of your results though! Kelly

Hi everyone! Thanks for all the best wishes! SandraL, thanks for the exercise tip. And yep, Oshawa is in Ontario, right outside of Toronto. It's a one-hour drive from the city I live in - Peterborough. Snowflake, the surgeon who did my biopsies said that since it has spread to two lymph nodes outside the lung (they are near my windpipe and he called them local) that surgery would be controversial. He basically said no to surgery and left it at that. Lorrie, aren't the people who work at the cancer centres angles? Actually, my cousin works as a chemo nurse at the centre I go to in Oshawa, which is really nice. She won't be my nurse, though, but it is nice seeing her when I am there! And, fortunately I have central air conditioning, which has been a blessing in the heat and humidity. Makes breathing much easier! Don M, I don't know if they will offer me surgery after radiation and chemo. I guess I will have to wait and see. Carolhg, congrats on your great results! I've been reading all of your histories and they are very encouraging and helpful. I'll report back next week and let you all know how it goes. Keep your fingers crossed! Thanks again, everyone! Kelly

Thanks for the encouraging info, Dave! I'll write how it goes for me next week. Kelly