BridgetO

Me again. My post got sent before I was done with it. I was saying that my partner went with me to the first chemo to see how I would do with it and what support I would need. I had side effects, including nausea, but fortunately not right after my chemo session, so I was able to drive myself there and back for all the rest of my chemo and radiation. The nurses at the infusion room were nice, and the radiation center staff, who I saw 5 days a week, were even better! Very supportive and helpful. I am now NED (no evidence of disease, in case you haven't run into that term yet) on 3 separate cancers. My lung cancer was discovered very early on a routine CT that I had to wach for metastases from my other cancer. On that one, the prognosis was not good, but statistics are just generalities, and each of us is an individual, so here I am feeling good today after 6 years! I believe in hope and living for today. I wish you and your husband all the best. Bridget

Hi Michele, My lung cancer was non-small cell and early stage, so I didn't have to have chemo or radiation. I did have concurrent chemo and radiation, plus some additional chemo, a few years ago for a non-lung cancer that was advanced and aggressive. My chemo experiences may not be the same as your husband's, but probably some similarities. Pegi's advice about what to take and what to expect is excellent. My partner went with me to the first chemo to see how I

Hi Jeannie, Welcome! This site is a great place to get information and support. My lung cancer was diagnosed very early-- it was seen on a CT scan that I had for surveillance for an advanced, unrelated cancer. I'm sure that you'll be hearing from some folks on this site who are survivors of advanced lung cancers, who will reallly inspire hope. I see that you already heard from Tom G. who is one of those people. Being positive and taking one day at a time as you are doing is wise. Also, know that occasional meltdowns are normal--you're in uncharted territory. How long the treatments will take depends on what they are. I had concurrent chemo and radiaion for cervical cancer. I had chemo weekly, and each session was several hours. Raidation was 5 days a week. Each treatment was really brief, only maybe 5 minutes (not including getting into and out of a gown.) One day a week it took longer because they did X rays and made sure that the placement of the radiaion was correct. They're very exact! My course of radiation lasted 6 weeks, which is stanard for some treatments. Be sure to ask lots of questions about your treatment plan and take notes. Good to go in iwith a list of questions. if someone can go with you for support and take notes, that's great. When you know what type of radiation and chemo are proposed, you can put it up here and ask for others' experiennce with it. I know that this all be very disorienting! Hang in there! I wish you all the best. Bridget

Hi Marian, I also was diagnosed with 1A, last November. I had a VATS lobectomy and I'm doing well, pretty much back to normal. I have had two other unrelated cancers, one of them stage 3, so I've had plenty of experience with "those thoughts". I'm sure that all of us who've had cancer have had them. I think it's important to know that they are normal. Here are some things I do to deal with them. First, I don't think of it as "controlling" thoughts, which sounds like a struggle, and I'm not into struggling. So when one pops up I acknowledge it as normal and let it go as in "Oh there you are, bye!" Sometimes I sing to myself "Let it go, Let it go, Let it go!" to the tune of "Let it snow" (if you're old enough to remember that!) . Then I do something else, like read something really engrossing, go for a walk, or, in a pinch, do a chore, continuing to let it go. Also, espeially when letting it go, I do my gratitudes. I say to myself things big and little I'm grateful for. I say, for example: I'm grateful for my spouse, I'm grateful for my health insurance, I'm grateful for that beautiful tree, I'm grateful for my shoes, I'm grateful for the sunshine today. I can just look around whereever I am and find things I'm grateful for. I do this for a specific length of time, say 5 minutes or maybe the time it takes me to walk a couple of blocks. This keeps my mind busy with some positive thoughts and keeps those other thoughts from having free rent in my head. These things have become habits for me and they work at least some of the time. I have a lot of space for joy in my life. No matter how long my life turns out to be, I want it to be good.. Hang in there, Bridget

Wow, you have a lot to deal with! Hang in there, you can do it.

Yay for you!

Hi Michele and welcome. There is a heading in this forum especially about small cell lung cancer. You'll see it in the forum list as "SCLC". There you'll find others with small cell. You'll also find people on this forum who are dealing with the VA and who will probably be able to give you suggestions about that. Tom G especially has had a lot of experience with the VA and has given people some helpful ideas. Good luck to you and your husband. Bridget

Best wishes for your surgery. Positive thoughts are on their way. Bridget

Hi Kaie, I'm also a survivor of breast cancer, as well as adenocarcinoma of the lung. I agree with you about the differences in the way those two cancers (and those who have them) are treated. Makes no sense since lung cancer causes way more deaths than breast. I'm sure it's at least partly due to the stigma of lung cancer as a "smoker's disease" . It seems to me similar to the stigma of AIDs as a "gay man's disease." I think we need to take a lesson from the AIDs/HIV community to raise awareness about LC (and maybe raise a little hell?) They did manage to mobilze funding that resulted in effective treatments that converted what wa once considered a death sentence into a treatable chronic disease. Just saying! My insurance did pay for tumor genetics (biomarker testing) of my stage 1a LC, so I think this is worth pursuing. BTW, my tumor didn't light up on the PET scan either,which my pulmonologist said isn't unusual for small, slow-growing tumors. Here's my personal opinion about cannabis and cancer. Tom is right that there isn't any real scientific literature about the curative effect of cannabis on cancer. However, it's important to ask why studies haven't been done. I think that it's in large part because of the irrational classification of cannabis as a Schedule 1 Controlled Substance. This maked it if not impossible, then unreasonably difficult, to do studies. Second, I think that big drug companies, the ones that can mobilize a lot of money for good controlled studies, hav little incentive to go through the hassle of asking for permission when they probably wouldn't make a lot of money off cannabis. I live in Oregon, where we have legalized cannabis. If my cancer returned or spread, I probably would research what I could find in the "non-scientific" literature and consider using cannabis with curative intent. I don't think there's much harm in it, other than driving under the influence. In your state I assume that legality is the big issue. Best of luck, Bridget

Hi again, My dressings were changed twice a day. I usually had some leakage around my chest tube, so it was a bigger, more absorbent dressing. The other incisions from the VATS were easy to deal with and I probably could have changed those dressings myself, but the chest tube insertion point was somewhat around back and not reachable without contortions and discomfort. My tube was attached to a one-way valve called a Heimlich valve, and then to a long tube that went into a drainage bag that I could empty myself with no probem. The only issue with the bag was that it had a small opening at the top so air could escape and it also let fluid escape if it wasn't kept upright. I rigged up on a place to hang the bag at night lower than my body, so it could drain. When I was walking around, I hooked it onto the waistband of my pants. When I went outside, I put an oversized raincoat over the whole thing. As I may have said previously, I was discharged the day after surgery. I had the tube for 10 days. I think most are out sooner, but I was still leaking air. I walked around outside a lot during that time--not much distance but often to a nearby store that has a coffee bar. I felt better than I expected to. Driving with a chest tube in is NOT a good idea, nor is driving while taking opiods, so youll need somebody to help with that. Here we have a service called Ride Connection that helps with transportation needs for elderly and/or disabled. It's not the same as the paratransit connected to our public transportation, but uses some volunteers as well as some paid drivers. For both my VATS and another past medical issue that made it had to dirve and painful to walk, I used Ride Connection short term, for times that my partner was unable to drive me. I wonder if your area has something like that? I also found grocery delivery helpful. Bridget

I'm so sorry to hear about your mom, Terri. I agree with Susan that palliative care is a good idea. Also, if it truly looks like no treatment is possible and she only has a few weeks left, please look into hospice. I've seen hospice services provide care and comfort for several people and their families. One was my own mom, who went into hospice less than a week before her death. She had metastatic breast cancer, with spread all over her body. She came out of the hospital where they could do nothing for her and went to a wonderful place where they kept her pain free in a dignified and respectful way.. I slept there on the couch--I had comefrom another state. All in all, it was a positive experience. Of course you are scared and don't know what to do. I wish comfort for both you and your mother. It's good that you are there for her. Bridget

You will probably need somebody to help you change dressings, especially if you are discharged with a chest tube in place.

Hi Rick, I too am mystified about how something could be found "stable" with only one data point. When my small nodule was found by the radiologist, the pulmonogist looked back at my prior scans. (I also get regular scans due to another cancer.) She said that knowing where it was, she could look back and see that it had started growing earlier, but that it was so small and indistinct that it only was recognizable in retrospect, so to speak. So your situation could be something like that, perhaps. Your oncologist should be able to help you clarify this, and you might want to also see a pulmonologist. Best of luck to you. Bridget

Hi Suepm, I had a right lower lobectomy (VATS) last November. I had bronchitis in January. I flew across the country in March and had no problems at all. I was a little concerned that I might have some pain flying and I went prepared with pain meds (leftover from after my surgery) as well as the anti-anxiety med (lorazepam) that I sometimes need because I'm a nervous flyer. But I was just fine and I've taken 3 more round trips (one of them long) since then, also with no pain, no breathing problems and no more than my usual anxiety when I fly. I hope your travel experience is as good as mine had been. Have a great trip! Bridget

Hi Heather, Welcome here. I'm sorry for the loss of your father I can understand why your freaking out, with his death and this CT finding. My cancer was discovered very early, in a scan done for another condition. They redid my scan in 3 months to see if it had grown, and it had, very slightly. My understanding is that lung cancer typically has NO symptoms until it is advanced. If you do have cancer it would be very early stage, when it is easiest to treat. So your cough is likely to be from something else, like the allergies you suspect. If I were you, I would ask for a referral to a pulmonologist, who might be in a better position than a primary care doctor to evaluate your CT results. Best of luck. Hang in there! Bridget

Hi Pearl and welcome! I had a small nodule also. I was advised to wait 3 months and have another CT, which I did. It had grown slightly. I was having regular CTs for surveillance of another cancer, to be sure there weren't metastases. When the pulmonologist looked back at prior CTs she could see where it was starting up, but so small and indistinct it couldn't be recognized until you knew where to look. Because of where my nodule was, a needle biopsy or biopsy through the bronchial tubes were both impossible. The thing didn't light up at all on the PET scan. I ended up having my lower right lobe removed by VATS (video assisted thoracic surgery). This was last November.. It was a Stage 1a adenocarcinoma. The surgery was fairly easy. I had much less pain than I expected. I recovered fairly fast. I was actually glad it was a lung cancer (if you can believe that!), It would have been a much worse prognosis if it had been a metastasis from my other cancer. I truly hope that your nodule is something other than cancer. But if it is a slow-growing cancer and is really small, the time to have it out is now and the outlook is really good. Hang in there and good luck! Bridget

Hi ocgal, Welcome here! Glad you found us. My cancer is 1A and I haven't experienced recurrences, so I can't help with your question. But there are plenty of folks on here who have had that experience and I'm sure you will hear from some of them and you'll find a lot of hope here, as well as information. Best wishes to you and your dad. Hang in there! Bridget

Hi and welcome. My situation is similar to yours sin some ways, but different in others. I'm a non-smoker. I have routine CT scans due to another cancer which could metastasize to lungs. Last year a small suspicious nodule appeared in my right lung. In 3 months I was rescanned and it had grown slightly. The docs said it looked suspicious, but that it didn't look like a metastasis,but they couldn't be sure. On a PET scan, it didn't light up at all, but they said slow-growing cancers sometimes don't. Because of its location, it couldn't be biopsied without taking it out. In November of last year, I had a right lower lobectomy by VATS. They also took out a bunch of mediastinal lymph nodes. The diagnosis was adenocarcinoma stage 1A. I'm one of the few people you will hear say thay they were glad for a diagnosis of lung cancer. If it had been a metastisis from my other cancer, the prognosis would have been much worse. The VATS surgery wasn't too bad. I was discharged from the hospital the following day with a chest tube in place. I was soon up and around, walking around my neighborhood. I hid the chest tube and drain bag under an oversized raincoat. The pain was manageable. I took opiods for a few days and then tylenol. I learned how NOT to move. I had the chest tube for 10 days. Many people have them out sooner, but I had a small air leak. Once the tube was out, I had hardly any pain at all.. My main recommendation to prepare for surgery is to get a bed wedge. I was advised to sleep with my head and chest elevated 45 degrees. At first I tried to do this with pillows, but ended up not sleeping well and getting a kink in my neck. A 12 inch foam bed wedge solved the problem. I used a small pillow on top of it and found a very comfortable position to sleep in. My second recommendation is, if you're discharged with a chest tube, is to get some chux (disposable underpatds) or have a thick towel under you in bed in case your tube leaks. Best of luck to you! Feel free to ask any questions you have. People on this forum have a lot of experience and knowledge. Bridget

Sorry to hear this. Thinking about you! Bridget

Hi Sarah, II was home with a chest tube too,after VATS.I also had an air leak. I had the tube about 10 days at home. I ended up in the ER on Thanksgiving day because the tube clogged and was leaking a lot of fluid into my dressing. It could have been dealt with in an office visit, but of course everything was closed for the holiday, so ithe ER it was. At that point the air leak was resolved enough to take out the tube. I was MUCH more comfortable with it out, no big surprise. So hang in there, it will get better soon. I'll be thinking of you and your tube. I recommend sleeping on a towel or chux pad in case of unexpected tube failure. Bridget

Welcome, Carol. This website is a good place to find info, both from Lung Cancer 101 (from the homepage) and on this forum, from survivors. You'll also find hope and encouragement. I was diagnosed with 1A and had lobectomy in November 2016. Undoubtedly you'll hear soon from some long-term survivors of Stage 4 cancers, who are pretty inspiring. I hope some can share experience with Alimta. I'll be thinking of you and your husband. Hang in there! Bridget

Hi Nicole, Is your father sleeping (or trying to sleep!) flat? If so, he might try a wedge pillow to elevate his chest and head, which makes breathing easier. A 12 inch high wedge gives about a 45 degrees elevation, whcih was what was recommended to me by the hospital. Bridget

That's great news, Vicky!

Hi Mally, Yay for NED! I'm on a 6 month scan schedule.

Welcome Raymond! It's good that you went to Sloan Kettering when you weren't satisfied with the answers you were getting. Cancer does mean a lot of reevaluation. Hang in there! Bridget