Jump to content

BridgetO

Moderators
  • Posts

    2,225
  • Joined

  • Last visited

  • Days Won

    175

Everything posted by BridgetO

  1. Welcome Karin. I'm so sorry for the loss of your sister. I too was diagnosed when I felt fine. I had a routine CT scan as a followup for an unrelated cancer, and a small slow-growing nodule was found. in my right lung. I had surgery and it was diagnosed as adenocarcinoma stage 1a. I didn't need chemo and I'm also feeling fine. I know first-hand how difficult it can be to be a survivor. I've had 3 unrelated cancers, one of them rare, stage 3 and aggressive. For several years after that, I was living day by day and being grateful for that, but not making any long term (or even medium term) plans, because I didn't think I was going to live long. I was 5 years from the end of treatment on that one, NED, and finally getting to the point of (almost) not being anxious when I had my routine twice yearly CTs for surveilance and believing in my long (or at least medium) term survival, when this lung cancer appeared out of nowhere. My perception of myself, life, and time is really different than it was pre-cancer. I've come to see cancer as an interesting journey. I've learned a lot, including about myself. I've heard people say they were grateful for having cancer because of what it taught them. I'm definitely NOT one of those people. I'd give up all of what I've learned and all of these "interesting" experiences in exchange for not having had cancer. But, since that's not possible, I'm doing what I can with it (most days at least) and maintaining a sense of curiousity about it and also gratitude for each day and for my experiences. I'm now in Santa Fe, accompanying my spouse who's on business here. I'm ready to go out this morning and have some new experiences. I'm hanging in there and you can, too. Best wishes to you, Karin
  2. Hi Lbelle. Successive CT scans showed that my tumor was very slow growing. My pulmonologist said that it needed to come out, but there was no big rush. I opted to go on a long-planned vacation and so it was a couple of months before I got in to see the surgeon, None of the medical team seemed to think this was a problem. In contrast, I had another cancer (not lung) that was a very aggressive type Everybody dropped everything and I was in surgery within about a week of the diagnosis. So I guess it depends on what the tumor is doing. If your doctor(s) say it's OK to wait to get a second opinion, it probably is. It is important that YOU feel comfortable with your choice. Not to say that what your family thinks/feels doesn't matter, but it's your body. Can you get everybody to take some deep breaths, pray, exercise, meditate, talk to their pastor or spiritual advisor or counselor or whatever might help them calm and be a support to you? For me, it's important to learn as much as I can and make my own decsions about my treatment. I have also learned that the way I talk to others about my cancer and the way I talk to myself about it also (if that makes any sense) is important. Hang in there Lbelle. It's your life, your decisions, your story.
  3. Hi Lbelle, I had VATs lower right lobectomy in November. A bunch of lymph nodes were taken out and were all negative for cancer. Diagnosis was Adenocarcinoma Stage 1A. I woke up from surgery with no vent and no oxygen tube. I was quickly alert and chatting, went to a regular hospital room (no ICU) and was walking around the floor later that day. I was released the next day with my chest tube still in, attached to a Heimliich (one way) valve to drain fluid and air into a bag. The tube and bag were a nuisance. The bag tended to leak if not kept upright. I did go out walking in my neighborhood the day after I was discharge, with the tube and bag apparatus covered by a big raincoat. The tube was in for about 10 days--longer than usual because I was still leaking air.. I had some pain, mostly from the tube, I think. I took oxycodone for a few days and then gradually transitioned to alternating ibuprofen and tylenol. I also learned how NOT to move to avoid pain. After the tube was taken out, I had very little pain. Altogether, the pain was less than I had anticated and I recovered fast. Has your surgeon recommended that you sleep with your head elevated? If not, ask about it. It areally helps with breathing after surgery. I got a 12 inch high foam wedge, which gave me about 45 degrees elevation. It was way more comfortable than trying to prop myself on pillows. I recommend it. I slept propped for over 2 months. Also, if you come out of the hospital with a tube in, I suggest you get some chux or similar disposable bed pads, since the tube can leak where it comes out of your side/back, and the bag can leak wherever you hang it. As I said, the tube is a nuisance. But I was able to manage it at home and was glad I got home from the hospital so quickly. I hope you can have VATS and that your surgery is as uneventful as mine was. Hang in there and best wishes/
  4. The flight was a success! 5 hours coast to coast--no pain. I took a very small dose of lorazepam, which I usually take when I fly due to anxiety. I had a slight cough and tightness in my chest at one point during the flight. I suspect this was a result of my recent bronchitis, rather than my surgery. In any event,it was relieved by a couple of puffs of inhaler. I'm happy to know that I can fly without problem since I really enjoy travel. So here I am in Washington DC, with 5 days to spend sightseeing while my spouse is at a conference. Happy dance!
  5. Hi, I also had a small nodule(mixed groundglass and solid) and a 90 day wait. Something was there, and VERY slow growing. Then a PET scan in which nothing lit up. I understand that because PETs show metabolism, slow growing cancers sometimes don't register on them. Because of where mine was, a biopsy couldn't be done without taking it out, and a wedge resection wasn't feasible because of where it was in relation to the blood supply in the lung. So I had a right lower lobectomy by VATs. There was an adenocarcinoma (1.5 cm.)that came out with clean margins. Mediastinal lymph nodes were taken out also and were negative. So it was stage 1a. I had a fairly quick recovery from surgery, and I don't need any further treatment at this time, just regular CT surveillance to watch for possible recurrence. About your fear of doom and death: Of course you're scared- it's normal to be scared with a possible cancer diagnosis. You're facing a lot of uncertainties. But that's different than being doomed. My situation was similar to yours and I don't feel doomed at all. I'm optimistic about living a good life for many more years . We're all headed for death, whether we have cancer or not. I don't think Im headed there vey fast, and I think you can realistically be hopeful that you aren't either. I like Tom G's suggestion about a thoracic surgeon consultation. I was seeing both a pulmonologist and a thoracic surgeon and found it helpful in understanding what was going on in my lung. Hang in there!
  6. I'm glad to hear you're planning a trip. Yay for travel!
  7. Thanks, skmcornett. I can't sleep on planes--I'm a nervous flyier. I do have some lorazepam for anxiety and I also have some pain meds from my surgery. I always take the lorazepam on the plane. I'll carry the pain meds with me just in case.
  8. Hang in there! Having been through this, you'll be a great physician. The lung cancer community needs you.
  9. I just read Tom G's comment in another topic about pain when flying after lung surgery. I'll be flying soon for the first time after my surgery and I wonder what other people's experience with this is. My surgery was less extensive than Tom's. It was a lower right lobectomy done laparoscopically in November. My flight is long, coast-to-coast. Advice and input appreciated!
  10. Hi Lbelle, Wow! You're getting great advice from everybody! I agree that it's important to be your own advocate. Ask lots of questions (including who can see you sooner) and ask for copies of test results. Some doctors assume we won't understand technical stuff, and sometimes I don't, but with the internet I can find out a lot. Information is your friend. Get as much as you can. If you can get someone to go with you to appointments, great! Make a list of questions. Have your support person take notes. Hang in there! Lung cancer is my 3rd primary cancer and I'm hanging in there and living a good life. You can too.
  11. Hello! Do you have access to a palliative care doctor. I hope you know that palliative care is NOT the same as hospice. Palliative care works to help a person deal with pain, debility and other effects of either the illness or the treatment. A person can get palliative care whether or not they are taking treatment aimed at a cure. Your mom sounds like she might be a good candidate for this. It's good she has her children to support her. Best wishes to all of you. Please let us know what you find out.
  12. Michele, your diagnosis and surgery was the same as mine! I'm now 3 months post-surgery. About 7 weeks out I had a cold with a lot of coughing and some mucus. I was a bit worried because when my coughing was at its worst, we were in the midst of the worst snow and ice storm in years and I couldn't get to the doctor. When I finally got in it was diagnosed as bronchitis--a chest xray showed it wasn't pneumonia or worse. Not pleasant, but I'm almost entirely recovered. I agree with Tom's thoughts about handwashing and hand sanitizer. I used to have a job where I made a lot of home visits to group homes and foster homes. I caught a lot of colds until I got in the habit of sanitizing my hands every time I left a home and got into my car. then I stayed pretty healthy. Hang in there, Michele!
  13. Hi Zachary, I suggest that , instead of "assuming" your X-ray is normal, you call your doctor and hear it from him or her. I think it's always good to get definite word about results of any test.
  14. My situation is in some ways similar to your mom's I'm 71. I had a lower right lobectomy in November for a small tumor. It was in a location in the center of the lobe where they couldn't do a biopsy without taking it out. My tumor had no aggressive component though--it was so slow growing that it didn't even light up on the PET scan. Lymph nodes were taken out and were negative. It was adenocarcinoma Stage 1. Since the tumor came out with clear no chemo was recommended. So chemo is not always the standard, I think. I will have to have CTs every 6 months , because of the risk of recurrence. Tumor genetics showed a KRAS mutation. From what I've found on the internet, KRAS tumors don't respond well to chemo and there's no targeted or immunotherapy for them, so it's good they got it all out. I'll be seeing my pulmonologist next month with a lot more questions. I's like to say to you and your mom that I've recovered really fast from my surgery and my life is pretty much back to normal. Also, it looks like you're doing all the right stuff. When you get the pathology and mutation testing, spend time to be sure you understand as much as possible about them. Ask questions. Look things up. If you're not sure about what you're being told, a second opinion is a good idea. It's great that your mom has you to advocate for her. Tell her hi from another old lady who's doing well after surgery and looking forward to getting MUCH older.
  15. Hang in there Adam. When you look at the statistics, remember that they show averages for a large number of people. You are an individual, a case of one. Having had 3 different cancers, I've found that for me, acceptance is a variable thing. I've learned as much as I can about my cancers, and that's helped me to make a plan to survive long and well. I try not to get too hung up on the odds. Best of luck!
  16. Hi Isaut, About travel insurance: Your step dad can probably get travel insurance. Tom's advice about reading the fine print is excellent. There are some policies that will cover pre-existing conditions with certain limits. For example, you might have to buy the policy within a certain number of days of making the first payment on the trip, and also you probably have to be able to travel on the date you buy the insurance. Being a survivor of 3 cancers, and having had to cancel a trip due to late occurring treatment side effects (and lose some money despite having travel insurance), Ive gotten to be a careful reader of fine print. I suggest the site insuremytrip.com on which you can compare a lot of different policies from different companies. Be sure, as Tom advises, to look at the actual policy and not just the summary. Happy travels!
  17. Hi there! I have some experience wtth those drigs and with concurrent chemo and radiation, although not for lung cancer. My non-small cell lung cancer is stage 1 and recent. However, I had another cancer, stage 3, grade 3, 6 years ago, at age 65. I had concurrent radiation with cisplatin for 6 weekly cycles , then 3 more cycles of carboplatin- a higher dose than the cisplatin- and taxotere without radiation. I had a lot of nausea and diarrhea during the concurrent treatment, which may have been because my gut got radiation, as much as from the chemo. I had to be really careful of what I ate to keep it tolerable. I didn't have the kind of fatigue that some people experience with radiation. I was't feeling like a ball of fire, but I was able to function OK. and drove myself to my daily appoiintments. I did have some digestive upset from the carbo/taxo combination, but not as bad. All the platinum drugs have a reputation for causing nausea. I also lost my hair and got neuropathy on the carbo/taxo. My neuropathy has decreased over the years, but I still have some. A serious side effect that I did have from the chemo was neutropenia.This is a decrease in the neutrophils (white blood cells that control infection )If this isn't caught quickly and dealt with, a person can not only pick up infections from others, but also from the normal bacteria that are on and in our own bodies. A few days after my first dose of carbo/ taxo, I developed a slight fever, called my oncologist and was sent to the ER, where they found I had zero neutrophils. They couldn't find any focus of infection, but put me on two antibiotics, ttold me about "neutropeniic precations" to avoid infection. I had no serious consequences After my subsequent chemo rounds, I got shots f Neupogen, which helps prevent the neutropenia. What I want to say with that long story is that if your father develops a fever, even slight, after chemo, get in touch with the oncologist right away (don't wait until morning, for example.) Fever is often the only sign of these infecions, which can become severe really quickly. This therapy worked well for me-- I had a cancer with a poor prognosis and today I have no evidence of disease. Of course you are worried. It's normal to be worried. I have found it helpful to learn as much as I could about the cancers I have had (3 different primary tumors) and to ask a lot of questions. I also went for a second opinion at one point when I wasn't sure about my treatment. I had to pay for it myself and I'm really glad I did. I think information gives me something to focus on besides worry! Best of luck to you and your father. Hang in there. You can do this.
  18. I'm glad to hear that you're surgery is done,Michele. Sounds like you're recovering well. Those darned chest tubes are a hassle! I one time had a problem wiith mine, but fortunately I had a big bandage on it so only my shirt got wet. No puddle. My surgery was exacltly 1 month before yours and I'm feeling pretty much back to normal and a little frustrated because I am still limited in what I can lift Let us know when you get your final pathology report.
  19. HI again Femie, My surgery lobectomy was VATS and my experience after surgery was much easier than Tom's. I was released from the hospital the next day, with a chest tube in place. I did have pain, but it was not as bad as I expected. I had to be careful how I moved or I felt I was being stabbed in the side. So I had to move carefully. But I was able to get out of bed, get dressed and so forth , carefully, but without help. I was able to sleep OK, with the help of oxycodone. I was able to walk a couple of blocks as soon as I got home from the hospital. Had to wear a great big raincoat to cover up my tube and drain bag. My energy returned pretty quickly.. I 'm 71 and was in pretty good shape (not atheletic but active) before the surgery.. I am now just over a month past surgery and rarely need anything for pain. Yesterday I walked more than 3 miles. I was able to drive as soon as I got off the oxycodone, which was shortly after I got the tube out. The biggest limitation I find is lifting. Af first the limit was 5 pounds and I didn't feel like I wanted to lift more than that anyway. NOw it's up to 10 and it's a drag because I feel like I could do more, but I'm being careful.. My recovery has been easier than I thought it would be. Everybody is different. Listen to your doctor and to your body and be as active as you are able to. Best of luck!
  20. Hi Faik, I'm new to lung cancer, and since mine is stage 1a, I'm not having any chemo for it. I did have chemo for another cancer. I had half-dose cisplatin at the same time as radiation, tnd then carboplatin and taxol. I think nausea is a problem for a lot of people with any of the platinum drugs and cisplatin is supposed to be the worst. There are good anti-nausea drugs, so be sure you get them. But everybody is different. I haven't heard that the chemo after the first one is easier. I think it's good to have plenty of support at the time of the first one so you can see how your body reacts. Even though I had nausea and some other side effects, including low white and red blood cells, I drove myself to all my chemo appointments after the first. Luckily, it was in town and only a few miles. Good luck to you. Also, Hi to Normthek! and welcome!
  21. Hi Femie, Welcome! I'm new this site too. I had a right lower lobectomy.. Fortunately Stage 1, so no chemo. Do you know whether your surgery is going to be VATS (laparoscopic, minimally invasive) or open? I had VATS surgery just about 4 weeks ago and I'm feeling pretty well now--still some tenderness around the incissions. I'm back to many of my prior activities except I can't lift over 10 pounds or go in the swimming pool yet. One thing I suggest is getting a foam bed wedge. I think it's common to advise people to sleep with their head raised 30 degrees after lung surgery because it makes it easier to breathe and I also think you're less susceptible to pneumonia. I tried for the first couple of days at home to prop myself with one of those "reading in bed" type of pillows but ended up with kinks in my neck. Got a bed wedge and it was MUCH more comfortable. A wedge that's 12 inches at the high end will give you about 30 degrees. Mine cost about $40 at a locan medical equiment supply store. I'd be happy to answer any questions I can. Bridget
  22. I'm new to this site and to lung cancer. I've had two other cancers. One was advanced and agressive, so I've been on this journey for a while. Here are two resources that I've found helpfule (and fun!). First, Harmony Hill, a retreat center at Union, Washington They have 3 day retreats throughout the year for people with cancer. The setting is beautiful, accommodations are niceand the program is pretty structured, with support groups, education, yoga, etc. Participation is expected .You can take a partner or caregiver with you. There's a lot of support for caregivers as well as survivors. And best of all it's FREE! You just have to get yourself there. I've been twice, along with my partner, and will probably go again since I now have primary cancer #3. The website is http://www.harmonyhill.org/ Second is Camp Mak-a-Dream. It's in Montana. They have a camp for children with cancer in the summer. In September there is a retreat for women with cancer They also have a retreat for young people (18-40) with cancer, both men and women.Their programs are for survivors only, no partners or caregivers.The women's retreat is great! Lots of things to do,- recreation, education and support. You don't have to any of it, but can choose to snooze, read a novel or enjoy the spectacular view if you want. The setting is in a rural location but facilities are not primitive. The shared cabins are modern and comfortable and the whole site is wheelchair accessible. They have a health center with nurses on site, so they can deal with any medical issue that come up. (And they do come up, because participants are often quite ill or in active treatment.) This place is absolutely great! Like being a kid at summer camp but better, because you don't HAVE to do anything if you don't want to. The webiste is http://campdream.org/. It is also FREE. You have to get yourself to Missoula and the camp bus picks you up at the airport. They do have some travel scholarships available for first-timers. Registration is January 1 for summer camps and June 1 for the fall women's retreat. It fills up fast, so it's important to register the first day. Anybody who has questions about my experience at either of these programs, let me know. Bridget
  23. BridgetO

    Surgery

    Hi Michelle, I just saw your post and I wondered if you had had your surgery yet. I'm new to this site. I had laparoscopic surgery on November 14 for Stage 1 adenocarcinoma. They took out my lower right lobe. I'm recovering really well. I have very little pain now--I rarely need even a tylenol. My breathing is easy and my lung capacity is increasing. My surgeon said that the rest of the lung will expand some into where the missing piece is. My main restrictions now are that I can't go in the swimming pool and I can't lift over 10 pounds. I'm really looking forward to going back to my water exercise class in a few weeks. If I were you I wouldn't worry too much about the delay. I, like you, had a really slow growing tumor that was watched for several months before they decided to do surgery. They couldn't biopsy it before the surgery because of the location. My doctors thought it was important to have it out, but not a big rush, because it was so slow growing. I had a vacation planned for October and I asked if it could wait until after that, and they said it was no problem to wait a few weeks. I was sorry to hear that you've had a hard time with friends and jobs. That must be really tough. I am fortunate to be retired. I work off an on part-time, I'm not well off at all but my retirementt income is enough that cancer isn't causing me a financial crisis without working. I also am fortunate to have really good health insurance. I was just this morning talking to someone about how much harder cancer treatment must be for people who are working, have insurance problems, small kids or parents who need care, and similar issues. I know how lucky I am to have the time to focus on my healing. Let us know where you are with the surgery and how you are doing. If you haven't had the surgery yet and have questions about it, I'll be happy to answer what I can. I think the people on this site can be a good source of support, even is we can't be there to hold your hand. Bridget
  24. Hi Tom and Lauren, I definitely am choosing to live! Travel is one of my great joys. I have 4 trips planned over the nest 8 months and I'm really looking forward to them. I'm also starting to write, and recently joined a writing class. I have some great role models for enjoying my time in cancer survivor mode. Since my diagnosis of stage 3 grade 3 cervical cancer in 2011, have been part of gynecologic cancer support group. There were 3 women in my group who each had stage 4 ovarian, which is a pretty dire prognosis. All have since died. All of them lived their lives to the hilt as long as they possibly could--traveling (one had a trip to China between chemo sessions, another went to the Galapagos and had to be medically airlifted out--her attitude was, oh, well, I had good travel insurance), horseback riding, tango dancing, photography, enjoying friends and family. Each maintained her sense of humor and her sense of hope. I'm sad they're gone, but I'm still happy when I think of them. They continue to be an inspiration to me and I want to live like they did, regardless of diagnosis or prognosis. I'm learing all I can about cancer so I can be actively involved in my treatment and surveillance. I find it all really interesting! I may have said this before, but being curious and interested in all aspects of this journey is a way for me to maintain a little distance and some balance and feel calmer about it. Tom, I got your book on Kindle and read it in a day. Boy, you've really been through it! I agree that if you can survive, so can I. Lauren, thank you, thank you for the link to the Stand Up To Cancer site. I read the stuff about the work on treatment for lung cancer with KRAS mutations. It's encourageing to me to know that if I have a recurrence, there may be some effective treatment. If you see anything else about KRAS, I'd love to hear about it. Bridget
×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.