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  1. 4 points
    Susan Cornett

    Cancerversary

    Today, I happily paint two of my toes red, to celebrate two years of being a survivor. Some days I ask myself it has really only been 2 years because it feels like I got the diagnosis so long ago. Lots of scans and needles and chemo and radiation and....I'm still here! I woke up this morning, very cheerful, almost like I was celebrating a birthday. I realize that EVERY SINGLE DAY is a gift, whether we have lung cancer or not, but that cancer seems to make each day that much more important. While I was thinking about everything today, I was overcome with emotion. I know that I am blessed to have as much time as I've had. I think about the friends I've made in this "club" that are no longer here. For those friends, and for the rest of us, we continue to choose life.
  2. 2 points
    In a short answer, yes. This is all normal. I experienced the same thing taking care of my father. There never seems to be a plan per say but more of a treat it, see how it responds, treat more, etc.. I know it is frustrating and by all means, if you don't think he is getting the care or attentiveness that he deserves and that this disease requires, seek a second opinion. Typically, patients do not undergo surgery with 3B, at least in my experience and research. Stage 3 is one of the most controversial stages of lung cancer with respect to treatment options. Has he had the fluid from pleural effusion removed and biopsied yet? That would be the first thing that needs to be done. One of the most standard treatment regimens for Stage 3 is Chemo/Radiation at the same time, so that is a little confusing why the radiologist would say no. I know how frustrating it can be dealing with doctors and weaving through treatment options. There were times where I wanted to just snap on every doctor around me until I got the right answers. I wish you the best of luck and please keep us updated!
  3. 2 points
    Tom Galli

    Cancerversary

    February 22,1019 -- 3 toes! Marked it on my calendar. Stay the course Susan..... Tom
  4. 1 point
    zaphodb54

    Trying immunotherapy now

    First off, I am a stage 3 NSCLC patient who was first diagnosed January of 2015. I underwent surgery (thoroscopic wedge resection) to remove a lime size tumor from my right lung. Everything seemed to be going good until a year later when a recurrence occurred in both lungs and the lymph nodes in my chest. More surgery was not an option so I was scheduled to begin radiation therapy and chemo. the radiation had some unpleasant side effects but resolved the issue with my lymph nodes. The chemo had very limited success so after a few months off to recover I started my second round of platinum based chemo and one other drug. I guess I was lucky since the side effects of the chemo were not that severe. I lost all of my hair of course and had a lot of fatigue and loss of appetite, but that was about it. Once again the chemo had limited success although it helped to keep the cancer from spreading to other organs. Last March my oncologist suggested Immunotherapy, so I began Opdivo infusion once every two weeks. Two great things about this. 1) I can tolerate the Opdivo a lot better with no side effects to speak of. And 2) My last CT scan showed some incredible results. the tumors in my right lung were stable (no growth) and the tumor in my left lung was gone ! I realize this is not a cure, but as they say it is a chance to live a little longer.
  5. 1 point
    BridgetO

    Trying immunotherapy now

    Wow, Cindy, It's great to hear how the Opdivo is working for you!
  6. 1 point
    CindyV

    Stage IV lung cancer weeks to live

    I lost my mom to sclc 25 years ago. I am so sorry to hear what you & your mom are going through. Life seems so unfair at times. I was diagnosed with the same type of lung cancer that killed my mom. My diagnosis was last March 7. I pray for you & your Mom. Please try to go see her. You may want to seek support for you. The cancer society offers these groups.
  7. 1 point
    CindyV

    Trying immunotherapy now

    I have stage 3 sclc & I too, am on Opdivo. I did 15, 3 day sessions of chemo every 21 days, then radiation. The Opdivo is wonderful! I had my second PET scan on December 27 & the results showed no tumor & no cancer anywhere! I think this is a great course of treatment. I'm infused every 2 weeks. Only side effect is being lazy the next day!😀
  8. 1 point
    Steff

    Cancerversary

    Doing a happy dance for you today, Susan. 💃
  9. 1 point
    BridgetO

    Squamous Cell

    Hi Mark, I thought it might be something like that. On this forum you'll find folks,includinng Tom G.who live well with one lung. Have they explored the possibilty of SBRT (precision radiaion) instead of surgery, or does the location rule that out? Keep us up to date and let us know how we can support you. Bridget O
  10. 1 point
    BridgetO

    Learning about my father's cancer

    You're in a difficult spot, Linda. I don't have any great advice or much advice at all, actually. But I wante you to know I feel for you. I went through a lot with my mom, who lived at a distance (I had to fly there). She had metastatic breast cancer with ongoing chemo and also she broke her hip. She had some cognitive impariment, due, I think, from her chemo. She lived alone. She was not in agreement with what I thought was in her best interests. It was a difficult time for both of us. So I have some idea what you're going through. My only thought is that it's a good thing to maintain family relationships if you can, even when things are difficult and not going as you think they should. I wish peace for you and your family. Bridget O
  11. 1 point
    KatieB

    Cancerversary

    Love it!!
  12. 1 point
    lindalouwho

    Learning about my father's cancer

    Yes, it is difficult. Tom, he had all of those things. T12. With the dementia, it's basically like the movie "Groundhog Day". He has one more radiation treatment, and he has asked several times, if at the end of rads he would be "cured". He refuses chemo because "he had a friend who died from it". He also said that 7 years ago upon dx. He has never changed his mind about that, and we all support that decision. I want to make sure we are doing everything he wants us to do, but it's hard to gauge. He doesn't fully understand it all. My mother does not want us to explain to him what stage 4 means, and his oncologist hasn't really given a prognosis- although the hospitalist told my us that he won't make it 9 months. Reading the stats pretty much backs that up, but...well...you know how stats are. Part of me wants to just tell him everything, but my mother will be furious. I feel so conflicted, as I know I would not want someone to withhold any information from me. But then again- would he just forget it the next day? Is this just the control freak in me, or am I trying to prepare for what is coming up?? I just don't know. Thanks for the replies!
  13. 1 point
    JoshK

    Clinical trials

    Just an update. We've now completed one round of chemo, and the doctors are hoping to do a minimum of four. I know some of the effects are cumulative, but it's pretty remarkable - no side-effects whatsoever. She is functioning at her usual (high) level. She's a bit bloated from the steroids, but that started even before the chemo. I know it won't get any better, but this was a big relief for me and a small victory overall. We can enjoy the next 2 weeks before the next round at least.
  14. 1 point
    Aljames

    Need advice, experience, something!

    Thank you for replying. Yes he had surgery, they removed the tumor and 10 lymph nodes, hoping that all the nodes would be clean and they could say he was good to go but one node wasn't clean. So in that regard they found more than anticipated but it wasn't as though they got in there and were surprised. No one pulled any fluid from the pleura, not when we were in the ER or since. The problem we had with the neulasta was that they attached the little box to his arm and explained that the needle had pricked him and withdrawn, leaving the catheter for the infusion. Then they told us it would beep in 24 hrs to let us know the infusion had started and when it stopped we could take it off. So in 24,when nothing happened, I was panic stricken. I tore through my file of paperwork and poured over the teeny tiny fine print directions, warnings, contraindications all in 17 languages to find that it starts the infusion in 27 hours. The nurses had not read all of the directions!
  15. 1 point
    Tom Galli

    Need advice, experience, something!

    Aljames, Welcome here. Tim's characterization of our disease is spot on. Lung cancer is complicated. I'm assuming your husband had surgery and his right lower lobe and 10 lymph nodes were removed. I'm also assuming the surgeon found more cancer that expected during the surgery and did not remove everything found. Could you clarify these points? I'll continue assuming he's had surgery. There is nothing normal about lung cancer, but post surgical chemotherapy is pretty common for stage 3 disease. If however, the surgery revealed more cancer than anticipated, then the medical oncologist may believe first line treatment is called for. First line treatment normally consists of daily radiation for about 30 days and weekly chemotherapy. But, your husband's radiation oncologist might believe withholding radiation is necessary to avoid complicating post surgical healing. Radiation can be given after chemo so that is not a problem. My survival experience points to problems radiation can cause to tissue and suture healing. I don't understand your comment about Neulasta. It is an injected drug that has a well recognized long bone pain side effect. Did your husband's medical practice require you to give the injection or did they not tell you about the pain side effect caused by the drug? During my chemotherapy, I normally saw my medical oncologist before or immediately after my third infusion. I also saw him after each scan. In fact, explaining the results of these in-treatment scans is a very important consultation. If his third infusion was on 2/8 and you saw the oncologist after that infusion, then the timing appears to be OK. I'm not sure that the oncologist is effectively communicating from your post, but the schedule of consultations seems to line up with mine. I found my chemo nurses to be a very effective resource during my chemotherapy. My wife was calling them all the time about side-effects and strange symptoms. They gave good explanations and even consulted with the oncologist to have drugs ordered to combat a problem. Use the oncology nurses as a resource. Unfortunately, bibasilar infiltrates (lung congestion, pneumonia and the like) and plural effusions are relatively common during lung cancer treatment. Using an x-ray is a common way to check on the extent of the plural effusion. Did the doctors remove the effusion fluid? I'd call the oncology nurses and let them know about the emergency room visit and tell them if the effusion fluid was removed. If so, they may have the fluid biopsied. You do need to keep an eye out for his plural effusion condition. If he runs a fever and has difficulty breathing or if breathing becomes painful, get him to the ER quickly. And, call the oncology nurses and let them know what is going on. Doctors are important but if they don't adequately answer your questions or get in your face, I'd be finding another doctor. You pay for their services and if you are not satisfied, take your business elsewhere. Did your family practice doctor refer you to the medical oncologist? If so, I'd tell him or her about the oncologist poor patient communication skills. If not, I'd ask your family practice physician for another medical oncologist. You've got us now to help so if you have questions, fire away. Stay the course. Tom
  16. 1 point
    This has not been my experience. I was diagnosed during surgery to remove a mass. Within 24 hours, I met the oncologist and he had a plan for me (chemo) by the time I showed up at his office after surgery recovery. Super Doc saw me each time I had an infusion. With my recurrence, I had both chemo and radiation. Again, Super Doc saw me each week and radiation onc saw me once a week. Bottom line: you and your family have to decide what is best for you. Your doctor shouldn't be defensive when you ask questions or want to know what's next. If you have other options, you may want to look into them. Hang in there.
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