LiveWithCancer's Journey with Adenocarcinoma, Lung Cancer

Patient: Lung Cancer > Non-Small Cell > Adenocarcinoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 7 years ago, Female, Age: 65, Stage IV, EGFR mutation positive: No

  1. 1
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    My first chemo treatments were hard. Every 3 weeks. VERY sick and weak for the first week, better the second and then had to do it all over again :(

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    8 Comments
  2. 2
    over 5 years ago
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    Nausea/Vomiting

    Side Effects

    and fatigue. Oh my gosh. The fatigue :( It was hard to walk from the couch to the refrigerator ... and that was not a long distance.

    2 Comments
  3. 3
    over 5 years ago
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    Fatigue (tiredness)

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  4. 4
    over 5 years ago
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    chemo was no longer working

    Decision Point

    I had the choice of going with a traditional chemo drug that had even worse side effects than what I was already experiencing and not a great track record or going with a clinical trial.

    1 Comment
  5. 5
    over 5 years ago
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    Immunotherapy

    Clinical Trial

    Treatments every 2 weeks. Best thing that I ever did!!! No sickness. No fatigue. (Or, far, far less than before) Tumors are not going away but they are not going anywhere else either!

    13 Comments
  6. 6
    almost 5 years ago
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    Opdivo Infusion #100!!!

    Celebration

    I looked forward to my centennial infusion for months, maybe a year or more. Let's just say that once it seemed likely I would hit 100 treatments, I was looking forward to that day. I never looked past the 100th ... But I sure wanted to reach 100. Well, the road to 100 was not as smooth as I envisioned. When I arrived for #99, I learned a tumor had outsmarted the immunotherapy so I was being pulled out of the trial I had enjoyed for over 4 years AND I was getting no more Opdivo. After a great deal of soul-searching and decision-making, I decided to have radiation on the Wayward Tumor. Because the nivolumab or Opdivo has controlled the cancer so well in my lungs, both my radiation and medical oncologists recommended I return to it after radiation ended. I had treatment #100 last week!!!! It was anti-climatic. After looking forward to it for so long, it was a bit of a let-down to actually get it. Nevertheless, I have crossed the 100-barrier. I wonder how many others have had 100 treatments of immunotherapy? (Some have told me their doctors say the length of treatment with immunotherapy is 2 years. I can only say that my doctors do not agree with ending it after 24 months when it is working and the patient isn't suffering from many side effects.)

    5 Comments
  7. 7
    about 4 years ago
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    Anniversary

    Celebration

    WhooHoo! I am coming up on my 2nd anniversary since starting the clinical trial. I now know that the name of my drug is Opdivo, through BMS. It has been approved for squamous cell nsclc and i believe they are seeking approval for its use in non-squamous cell nsclc, like i have. I get my treatments every 2 weeks and have CT scans every 6 weeks. The tumors remain completely stable. There has been no change since the day i started the trial. The radiologist often calls the tumors "scars," but my oncologist says he can't know if they are scars or not just by looking at CT scans. This immunotherapy trial has been such a blessing. My life has been returned to me. I feel great and I have been able to participate in the activities i loved before my diagnosis. As a testament to how well i am doing on this trial, a friend told me the other day that i was lucky i didn't have a bad kind of cancer. (She doesn't know much about cancer! She was far more concerned about another friend who had a little basal cell skin cancer on her leg that had to be scraped off.) Recently, a site was posted here on WhatNext about clinical trials for immunotherapy that might be of interest: http://www.cancerresearch.org/cancer-immunotherapy/about-clinical-trials Based on what i am hearing and reading, immunotherapy is the wave of the future. I am so very fortunate to have gotten started with it in its infancy and to have responded so well. Not everyone has the same excellent response i have, but many do! Thank you, Jesus!! I am blessed beyond measure!

    7 Comments
  8. 8
    almost 4 years ago
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    CT Scan Shows Tumors are Still Stable

    Celebration

    I had been sweating it a bit because my CT scan in June showed that one of my tumors had grown from 7 mm to 13 mm in 6 weeks. My last CT scan shows all is still stable, as it has been for the last two-plus years. Whew!!! Big, BIG sigh of relief!

    10 Comments
  9. 9
    over 3 years ago
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    Tumors are Still Stable

    Celebration

    I got results of a CT scan that shows the tumors in my lungs are still stable. There is one on my collarbone that has gotten some attention lately. The radiologist says it shrank a bit this time. (I am personally not convinced it has been active at all. I wonder if it isn't how various radiologists see it and measure it... at any rate, it was good to hear it had shrunk a bit!). The Opdivo continues to do its magic! I started on the trial in 7/2013 and feel very blessed that my tumors haven't built up a resistance to it.

    3 Comments
  10. 10
    over 3 years ago
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    Still Unremarkable

    Celebration

    If someone had told me before cancer that I would rejoice in being told I was "unremarkable," I would have thought they were crazy. That all changed with the cancer diagnosis. Those "unremarkable" words are music to my ears!! I got the results of my last CT scan today. Continuing since 7/2013 ... my lung tumors remain stable ... "unremarkable." No further metastasis since I began participating in the Opdivo (nivolumab) clinical trial. I think God every single day for this drug!

    19 Comments
  11. 11
    over 3 years ago
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    Immunotherapy

    Clinical Trial

    Turns out the trial was for nivolumab or Opdivo. God was definitely watching over me when He allowed me to get into this trial. It has kept me alive and living for three years and counting.

    3 Comments
  12. 12
    almost 3 years ago
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    Cancer is STILL stable

    Celebration

    It is October 2016. Four years ago, I learned I have lung cancer. My first oncologist thought I would live 4 months. So glad he was wrong! I recently had a scan where the radiologist said a lymph node tumor had shrun (every other scan, it is said to increase and decrease in size ... I think it hasn't changed at all, thought my current oncologist says his measurements show an actual decrease in size. I was most concerned about the radiologist saying a lung tumor had grown and suggesting a PET scan to determine what was going on. That's the first time ever that such a recommendation was made. At the same time, the measurements on the radiology report didn't show growth ... they suggested shrinkage, if anything. I don't trust radiology reports by this particular radiologist. My doctor measured the lung tumor on the scans. He concluded that the tumor hasn't changed in size at all. Whew! I had my 79th Opdivo treatment yesterday. My health care team and I are already starting to plan our celebratory event when I receive my 100th infusion in about 6 months!!!

    9 Comments
  13. 13
    over 2 years ago
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    Side Effects

    I have had many, many CT scans since I was diagnosed with cancer, all of which have used both barium and an iodine contrast to allow the radiologist to see what's going on better. Until December 2016, I have never had any kind of reaction to the contrast or the barium, other than the occasional urge to throw up the barium (why oh why can't they make that stuff taste better????) (I have found, though, that if I drink through a straw, suck on a hard candy while drinking, and hold my nose or at least my breath for awhile after each drink, it doesn't taste AS bad.) In 12/2016, I had what I thought was a panic attack after I had my scans. I couldn't breathe. I didn't know WHY I would have a panic attack. I never had one before. The scan was finished and was uneventful. I didn't mention my "panic attack" to anyone. I talked to myself and calmed myself down ... and finally I was able to breathe. I came home and slept for most of the day. I didn't mention it to my doctor. In fact, I forgot all about it. Until my last scan at the end of March 2017. When the tech unhooked my port from the contrast, I got a huge taste of it in my mouth. And, then I saw stars. I was nauseous and could barely walk. My breath was shallow and I felt faint. I mentioned it to my tech - only by saying I didn't feel so good. He confirmed that sometimes, after many scans, someone will have a reaction. Neither of us was overly concerned. I told him I would just sit in the waiting room, drink some water, and rest a minute before I headed upstairs to have my port de-accessed. While I was sitting there, I was having a lot of trouble getting a breath. But, I'm not one to complain or to cause concern, so I silently tried to work through it and not scare anyone in the waiting room... Then, in came a man who also had to drink barium. He requested banana-flavored barium. Barium is bad enough. But fake banana tasting barium???? My stomach started turning flips at the idea. I had to get to the restroom as quickly as possible to be sick. I threw up several times (barium does NOT taste better the second time around, trust me on this). I also had diarrhea. And, I felt very faint. I tried to get enough strength to get out of the restroom and up the elevator to get to the oncology department. Once I finally made it upstairs, I was fortunate to be called back right away. And, for once, I told them that I was feeling really, really terrible. They could see that by looking at me. My eyes were bloodshot and I was dripping sweat even though I was freezing. They took my oxygen level, pulse, heart rate, and blood pressure. Since they had readings of all of the above that they took just a few minutes earlier when they accessed my port, they could see that my numbers were not good. I continued to have trouble breathing and I was feeling just awful. For the first time, I heard what was wrong with me. The nurse said I was having a reaction to the iodine in the contrast. She immediately started an IV of fluid and gave me a benedryl shot to counteract the allergic reaction. It took several hours, but finally I felt good enough for them to let me come home. Before I left, though, I had had more diarrhea and my blood pressure dropped to 90/50 or thereabouts. I joked with the nurse that the two numbers were trying to meet in the middle. I really didn't realize how serious my situation was. I just knew I felt terrible that I had caused a lot of extra work for the girls in the chemo department. When I got home, I read about reactions to iodine and was, for the first time, really scared. Even though the danger had passed, it was several days before I could get out of my head that I had probably come close to dying. Or closer than I ever have before... For anyone reading this, the following symptoms are life-threatening. The condition is called anaphylaxis. It requires emergency medical attention. Symptoms of anaphylaxis include: abdominal pain confusion diarrhea dizziness difficulty breathing heart palpitations hives (along with other symptoms) lightheadedness nausea or vomiting altered level of consciousness rapid pulse (http://www.healthline.com/health/allergies/iodine#overview1) I did NOT forget to mention the reaction to my oncologist when I saw him several days later. He told me that it wasn't all that uncommon to develop an "allergy" to the contrast after as many scans as I have had. His recommendation is for me to have scans without the iodine contrast from now on. (However, apparently there are steps that can be taken if it becomes necessary to use the contrast for scans in the future. Steroids and antihistamines can be prescribed for before and after the scans. Apparently these steps will prevent a reaction. I personally hope that I will never again have to have a scan using iodine. I will be very nervous if asked to undergo another scan using contrast, even with the preventative measures!)

    8 Comments
  14. 14
    about 2 years ago
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    Decision Point

    After being in the clinical trial for Opdivo (nivolumab) for almost 4 years, i have been presented with a new option. Since 7/2013, i have gone for treatments every 2 weeks. It gets old, but, hey!, i am still alive to complain about them. I have had relatively few problems since joining the trial. My thyroid quit working correctly at the beginning of the trial. We easily control that with levothyroxine. No biggie. Other than that, i experience some fatigue the day of and the day or two after treatment, but nothing like the fatigue brought on by chemo. Every once in awhile, i might have some diarrhea or something, but, mostly, i have had 4 years of treatments witn little to no side effects. The drug company that sponsors my trial has presented me with a new option. I can go for treatments only once a month. The infusions will be done over 30 minutes, instead of an hour, like they are currently. According to my researcher, most people now getting Opdivo have it infused over 30 minutes. There have been no problems with the faster infusion time. My only concern is that i will have to get a bigger dose of Opdivo, if i make the change. I worry because i wonder if i should mess with success. I have friends who have developed coughs that won't go away due to Opdivo. Others have developed pneumonitis, a problem that left their lungs permanently weakened and in far worse shape than before they got Opdivo. I play the "what if" game ... what if i develop symptoms that lessen my quality of life? I hate going for biweekly treatments, but it's better than a cough that won't go away or, far worse, permanently damaged lungs, especially since i love to play agility so much and that requires working lungs... My oncologist was excited to offer me the chance to go to once a month. But, when i mentioned my fears, he was perfectly happy to agree that we might want to just maintain the status quo. The decision is totally in my hands. And, i just don't know whether to take the gamble or not. I go for yet another treatment (#94, I think) on Monday. I am going to ask my researcher a few more questions. I am currently leaning toward taking the gamble, but i may be back on the "stay safe" side by Monday!

    7 Comments
  15. 15
    about 2 years ago
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    change in treatment

    Decision Point

    I was given the opportunity to switch from having Opdivo infusions every two weeks, which gets very tiring aND expensive, to having it every 4 weeks. I currently get 260mg infused over an hour. If I switched to the monthly infusion, I would get 480mg over 30 minutes. As much as I would love to go to monthly treatments, I am not willing to take the chance of the greatly increased dosage causing trouble with my organs or immune system. So, for now, I will keep ma king that biweekly trek to the cancer center for blood draws, doctor visits, and infusions.

    6 Comments
  16. 16
    about 2 years ago
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    After a scare, all is still well

    Celebration

    Two and half weeks ago when I went for my 95th infusion of nivolumab (Opdivo), my doctor expressed concern because my kidney numbers were not looking too good. In fact, they looked like I had developed moderate kidney disease in just a few weeks' time. He was fearful that the Opdivo could be the culprit since it is known to attack organs on occasion. (The most common organ it attacks is the thyroid. It took mine out very early on.) He said he would go ahead and send me for my bimonthly treatment, but that I needed to drink a lot of gatorade and otherwise attempt to increase my electrolytes and get my kidneys hydrated. Several friends went overboard with gifts of food, drinks, vitamins... I have some of the best friends in the world. I lost some when I got cancer, but the ones I gained are incredible. I ate foods that were supposed to increase electrolyes. I bought water with added electrolytes. I made myself drink gatorade and lemonade, and juices that are high in electrolytes. Yesterday, I went back to the doctor for treatment #96. I was anxious about what the blood test would reveal about my kidneys. Stopping Opdivo could mean the beginning of the end for me. But, our efforts worked!!! My creatinine levels were just very slightly above normal range, much reduced from the past few blood tests!! Yes!!! (We are wondering if the allergy to the iodine contrast I experienced recently is the culprit for the scare. Hopefully, whatever the issue is/was has resolved itself and I can once again anticipate a big celebration when I go for treatment #100 in a couple of months!)

    1 Comment
  17. 17
    almost 2 years ago
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    Off of one trial, Will I get into another?

    Decision Point

    It is the end of an era. Almost exactly 4 years after beginning the clinical trial for what turned out to be Opdivo, I have been taken off of the trial. I had a total of 98 treatments. I was really looking forward to celebrating 100 treatments, but it isn't to be. The tumor on my supra clavicle has been showing signs of growth for the last 6 months. It had grown by a centimeter in 3 months so apparently it is no longer responding to the Opdivo. I spoke with a researcher today about another trial. I don't know that I will qualify for it, but if I do, I will be entering a Phase 1 trial, which is a little scary. However, I totally trust my doctor to put me where he thinks will be best, so I am all in for it, if I qualify. I have to have the PDL-1 genes and we don't know if i do yet.

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  18. 18
    almost 2 years ago
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    One trial filled before I could get in, now what?

    Decision Point

    I learned yesterday that the trial for new immunotherapy treatments I was hoping to get into has filled. Apparently there are no other viable trials at the moment (I need to do research to verify that). I missed his call, so haven't been able to discuss it with my oncologist, but he called yesterday wanting me to do chemo (Docetaxel) while I wait on another trial to become available. He thinks a new trial for immunotherapy will be coming in the next 2-3 months. I have a total and complete aversion to getting Docetaxel. I have often said "quality of life over quantity" ... I will try to reach the doctor to discuss what other possible options he has besides Docetaxel or no treatment at all until the new trial begins. Right now, I think I might gamble and wait rather than put myself through the torment of Docetaxel. Decisions, decisions!

    1 Comment
  19. 19
    almost 2 years ago
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    Is my decision to go with radiation going to fly?

    Decision Point

    Well, today I finally will be visiting with my medical oncologist for the first time since he took me off of the Opdivo trial a month or two ago.I am nervous about the meeting because I have decided to take my treatment plan a direction that he doesn't favor. We have had an incredible relationship for over 4 years. I hope it won't be ruined by the fact that I have decided to have the tumor in my supraclavicular lymph node radiated rather than waiting around on a clinical trial to open up. I have weighed this decision carefully and have spoken to a number of people who I trust and I can see no reason why radiation at this point is not the very best solution to quickly eradicating the growing tumor. Radiation is scheduled to begin in 4 days...

    2 Comments
  20. 20
    almost 2 years ago
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    External radiation

    Radiation

    I had my first of 15 radiation treatments today. It was a little scary when mask was clamped down over my head and chest. It felt very tight, especially over my chest, and I had trouble breathing at first. Then, I worried that I needed to sneeze ... and there I was clamped down on my back on the hard table ... sneezing would be difficult. Then, I thought I needed to cough ... that was more doable. When I finally decided I should think of other things far removed from my current circumstances, everything got easier and the session was over before I knew it. At least so far, I am feeling no side effects at all. My neck isn't sore or red. My throat is fine. I am not fatigued. But, I know the effects are cumulative and one treatment doesn't tell the story. I will post updates along the way.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    2 Comments
  21. 21
    over 1 year ago
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    Anniversary

    Celebration

    Five years!!! I didn't really expect that i would actually make it, but i did!! Five years ago, i went to see Dr Donna Casey to find out why i kept gaining weight. We still don't know the answer to that question, but she felt the little knot near my collarbone whose discovery set me on a journey i never, ever expected to take. It was a few weeks later that the cancer that changed my life was definitively found to be stage IV adenocarcinoma of the lungs ... but the CT scan Dr Casey sent me for that day told enough of the story to set in motion a PET scan and then a biopsy for positive identification. I have been in treatment ever since. I have to admit, it gets old sometimes. Every two weeks year after year ... big sigh. For someone who only very rarely went to the doctor before, it seems a little excessive.

    2 Comments
  22. 22
    over 1 year ago
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    Cancer is shrinking

    Celebration

    I started back on Opdivo after radiation was completed. When I had my last CT scan (12/2017), they showed that the radiation worked on the tumor in my supraclavicle lymph node (it is gone!) and a tumor in my right lung that has been stable (not shrinking or growing) for 4+ years shrank by about half.

    9 Comments
  23. 23
    over 1 year ago
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    Drug Therapy or Medication

    I went from biweekly (every 2 weeks) Opdivo treatments to monthly treatments this month (April 2018). I was really nervous about making the change because it means getting a "double dose" of the drug at one time. I feared "messing with success" - the 2-week treatments have been working for me for nearly 5 years with no real problems - but, at least so far, there have been no ramifications from getting the double dose. I am celebrating not having to go back for another treatment for a whole month!! I haven't been that free since I was diagnosed with cancer in 10/2012!

    0 Comments
  24. 24
    about 1 year ago
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    Anniversary

    Celebration

    Five years ago this month (July 2013), I met with my current oncologist and discussed getting into a Phase 3 clinical trial. I had absolutely no idea what drug we were going to be testing, but I was ready to be a "guinea pig" in order to help future generations of lung cancer patients. No one was more surprised than me when I responded to the treatment. I finally realized that I was getting immunotherapy and since I knew I was getting a Bristol Myers drug, I deduced it was Opdivo :) I had a tumor outsmart the nivolumab (Opdivo) about this time last year. I had to get out of the trial. I underwent radiation to what I named "Wayward Tumor" and then resumed my Opdivo treatments in October 2017. At least as of my last scan, my remaining tumors remain stable. I know that I am beyond fortunate.

    0 Comments
  25. 25
    9 months ago
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    6 years

    Milestones

    It was 6 years ago today that my PCP sent me for the CT scan that changed my life with the discovery of lung cancer. I thank God for her every day. Most doctors would have missed that little knot she felt. I have never been NED during these 6 years, but I have been able to continue to live a full and happy life, thanks to immunotherapy. I am beyond grateful to the scientists and researchers who spend their lives trying to find ways to extend our lives, despite a dire diagnosis. (10/29/2018)

    0 Comments
  26. 26
    8 months ago
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    Lost loved one

    Loss

    My 43-year-old son died a week ago (11/2/2018). He didn't have cancer. In fact, based on the medical examiner's autopsy, he didn't have anything wrong with him (or wrong enough to kill him - he had diabetes). When he died so suddenly, I lost some of my passion for lung cancer research and awareness. Maybe i will get it back, maybe i won't. Thankfully, my son told those he loved that he loved them every single day. He gave out lots and lots of hugs. I honestly believe he probably didn't have a lot that he wished he could say before he died that he hadn't said or done. Lots of us though believe we have tomorrow to make amends, to say I love you, to correct a wrong. It is an important lesson.

    2 Comments
  27. 27
    3 months ago
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    treatment

    Decision Point

    My first treatment for lung cancer was in December 2012. In July 2013, I began Opdivo. With the exception of a couple of months in 2017 when I was getting radiation, I have been getting infusions at least once a month (and mostly twice a month) since that time. Today, when I went to see my oncologist, I had a relatively short list of "complaints" - rash, swelling, eye issues - most of them weren't all that new but I finally remembered to mention them. Maybe it was telling them all at the same time that caused my oncologist to ask me what I would think about taking a treatment break. So ... I got to leave the clinic today with no Opdivo infusion! And, I'm going to take a break from treatments until my tumors start growing again - which could be immediately or might be a long time from now ... none of us can know. I'm excited to have a break. I think my body needs it. It does seem like I was having more side effects recently than I have in 5 years or more ... and that felt to me like maybe my body was becoming a little sensitive to the treatments. Will be interesting to see how long I will remain stable (if at all) and what might be up my doctor's sleeve when I need to resume treatments (in, hopefully, a long time).

    10 Comments