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  2. Carole Baker's Story

    My lung cancer diagnosis came as quite a shock to my family, my doctors, and me as I’ve always maintained a healthy lifestyle. I exercised regularly, ate healthily, never smoked, and enjoyed a variety of outdoor sports and other activities with my husband and our three children. I worked as a learning specialist for children ages K-8 and loved my job. Everyone I was close to commented that I was “the healthiest person they know.” But in March 2011, after worsening back pain, I visited my physiatrist who ordered an MRI. I figured I had a disc issue with my back or created an injury from too much sitting during work. When I saw my doctor for the results, she was speechless; she told me my upper body was "riddled with lesions." I said there must be some mistake, that the scan was someone else’s. As the doctor insisted there was no mix-up and this was truly me, I felt as if the floor had given way under me, a feeling that never seemed to fade from my day to day experience. I was 54 years old. A few days later, I was diagnosed with Stage 4 non-small cell lung cancer. Since I was an otherwise healthy, active, never-smoker, the doctors at Memorial Sloan Kettering Cancer Center predicted I would have the EGFR mutation, and the biopsy results proved they were right. The targeted therapy, Tarceva, shrunk my tumors and with tolerable side effects, allowing me to continue leading a relatively normal life. I even took up sculling, a sport that I had always aspired to learn. However, I was disappointed when only after 9 months my cancer figured out a “way around” the Tarceva, which is expected for targeted therapies (referred to as acquired resistance). Thus, began my participation in a series of clinical trials and chemotherapy, all with mixed results and, at times, difficult side effects, which forced me to retire from my work which I truly loved and miss a lot. One bright period during these trials was a 14-month durable response from a trial combining Tarceva and the immunotherapy drug called Nivolumab, also known as Opdivo. Unfortunately, after 14 months I had to be quickly removed from this trial due to adrenal failure and colitis. In addition, I have been taking blood thinners since the diagnosis because of a DVT that was found at that time, and a couple of years ago I had a brain tumor surgically removed. My latest battle is with Leptomeningeal Disease, against which I hope to beat the odds once again. Throughout my treatment, I’ve taken advantage of different integrative health services to help manage symptoms and side effects, such as acupuncture, counseling, support groups, and meditation. I can’t say these endeavors were always helpful, but It was important for me to try to find alternate ways to manage symptoms, both physical and emotional. However, over time my stamina began to wane, and my sense of self efficacy began to diminish. It became increasingly frustrating not to be able to do the things I always enjoyed. The treatments and their side effects can wear you down. Initially, I struggled to find camaraderie and other survivors who have the same mutation as mine. Social media has been particularly helpful, especially in the beginning when I was trying to learn about different treatments and find a community. LUNGevity, Cancer Grace, and Inspire, and Lung Care Alliance were all useful sources of information and support. My husband has been a great support and care giver. Initially, he dug into the research to learn what treatments were in development, so we knew what was in the pipeline. Moreover, my children have also been there for me. Even though they’ve grown up and don’t live at home anymore, they still come to visit me as often as they can. It has been difficult for me to accept not being able to participate in their activities and lives the way I was able to when I was healthy. It has been a continuing effort for me to feel “a part of the game.” If I could share my experience with someone newly diagnosed, I would recommend getting as much information as you can from credible sources and not being afraid to get second opinions. It’s best to be treated at a major cancer center even if it means traveling because the research experience, depth of knowledge, and specialists they provide is cutting edge. I would also recommend participating in clinical trials if they’re an option, as well as trying to find people to connect with who are going through similar situations. Since my diagnosis life has been a roller-coaster ride, living with uncertainty, and trying to function amidst toxic side effects. I try to appreciate the good days and keep active. This spring will be my seventh-year anniversary living with Stage IV lung cancer. I am grateful for those who are raising awareness of lung cancer as a growing epidemic in non-smoking women and am excited to share my story to help other patients. I am especially interested in helping to erase the stigma that lung cancer is only a smoker’s disease, and hopefully increase research funding to the level it should be.
  3. Today
  4. I still have so much pain

    I just recently had VATS surgery removing the top right lobe and 13 lymph nodes. The nueropathic pain I feel is mainly in areas the surgeon was in finding things to remove...not at incision places, except for chest tube area. My primary doctor has been the most helpful with monitoring and dealing with my pain. She has helped me adjust levels of gabapentin. When I am active for a while, my core gets tired and sore in areas. I use two large Salon Pas(lidocaine) patches to relieve the pain. I bought Lamaze maternity soft sleep bras from Amazon.com. I just returned to wearing bras. These are so soft and comfortable. I would talk to other doctors, such as your primary doctor, to get pain relief. I hope you get help.
  5. Hello

    Hi Kathleen. I also belong to the long term survivor club. Welcome ! Donna G
  6. I still have so much pain

    You might consider asking for a referral to a pain specialist or palliative care specialist. Palliative care is usually used when to help someone during treatment of if they have ongoing disease and need help with pain management and other quality of life issues, so I'm not sure whether it's appropriate in your case, but it sounds like your quality of life is definitely affected. Do you have a primary care doctor you could ask for a referral? With inflammation, I wonder if it's possible to have lymphedma in the chest from lung cancer surgery? I have lymphedema in my legs from a surgery and radiation from a gynecological cancer. I wear thigh high compression hose which keeps the swelling under control. From looking at compression garments online, I know that there are some compression garments (bra type ) for the chest and back area. My lymphedema was diagnosed by a physical therapist. Keep asking for some intervention until you get some relief! You deserve to be comfortable. I'm fortunate that my lung cancer surgery was VATS, so I was spared the big incision. Some who have had VATS do end up with nerve pain from the little incisions, though. I'm grateful I was spared it. Bridget O
  7. Hello

    Hi Kathleen and welcome. Great to hear from a long term survivor. I second what LexiCat wrote. Bridget O
  8. I still have so much pain

    I will have to try some of these bras. I remember talking to the surgeon about nerve damage, because when the scar tissue was touched my nerves would jump in front of my chest..His recommendation was to go back in and kill the nerves. That is not an option. Nerves are there for a reason. The bones and tissues all around my chest are still so tender...I will try one of these bras and see if that helps. kathleen
  9. Voice loss/hoarseness a side effect of Opdivo?

    Well, that was the good part of the scan! Unfortunately, there were some negatives but nothing we can't beat! I'm tending to agree with you based on his symptoms. Thanks Tom! Thank you so much Judy! Very helpful info. Contacting the PCP first thing Monday morning. Best of luck to you and your family!
  10. Happy Spring!

    This really isn't typical for NJ. We generally don't get huge amounts of snow, or even that many snowstorms, but this year late spring has been one big mess after another. Actually, I shouldn't complain. Near Philadelphia, and the Delaware River, we generally have less bad weather than at the shore or a bit further to the north. I'm hoping this is the end of it for this year. The last two days were in the 40s and it's already mostly melted.
  11. I still have so much pain

    Wow, that's a long time to still be having pain! I'm so sorry you're having to deal with it. I'd say your surgeon is probably the one to advise you about the pain--it could be there was nerve damage of some kind. You might also want to try a different type of bra. I just googled "bra comfort after chest surgery" and found a bunch of specialty bras that are supposed to be more comfortable.
  12. Hello

    Hi, Kathleen, Welcome! Pull up a chair and make yourself at home. Glad you're here! When you're ready, maybe you could share a bit about your diagnosis and treatment for the benefit of those who are just getting started or are in the midst of treatment. Teri
  13. Mally

    Thankyou Tom i really appreciate your explanation of my situation and as usual i feel better after i read it .....you missed your calling to be a doctor because you wouldve been a great one ...
  14. I still have so much pain

    7 years ago I was diagnosed with nsclc, adenocarcinoma and went through surgery. The surgeon removed the right upper apex of my lung and also removed several lymph nodes located in my chest, located between my breast. I was 56 at the time of surgery. Of couse I also suffer with COPD. I recovered from the surgery very well and was back to work only after 5 weeks with the blessings of my doctors. My pet scans have been clear up until 5 years ago, I have not had one since. I am positive it is still good! The incision starts at the middle of my shoulder blade and goes all the way around my shoulder blade and stops just short of my right breast. Wearing a bra is horrible. The pain at time is the worst. I am fine first thing in the morning and as the day goes on my chest feels like it is swelling! By the end of the day I have to get out of the bra. It feels like my bra is cutting me in half. I have told my pulmonologist about the feeling of swelling and not much done about it. They say it sounds like maybe some inflamation. I have been released from the surgeons office and I do see my oncologist this coming monday. Which one of there professionals do I need to bring this problem to or am I gonna have this pain the rest of my life? I am so happy that I don't have cancer. That was the most horrible time in my life but the left over pain....... Any suggestions?
  15. Yesterday
  16. Hello

    Hello, Just want to say hello! I am a 7 year survivor of lung cancer and am so proud to be here. Kathleen
  17. SCLC- PCI - Final 5 - Done & Done

    Leo, Great news on PCT and wonderful report on your experience. Agree completely the time between NED -- diagnostics -- results is indeed most anxiety laden. We call it Scanziety. Some spell it with an x but I'm wedded to my spelling because I wrote a book about it. Stay the course. Tom
  18. Voice loss/hoarseness a side effect of Opdivo?

    Have had 5 Opdivo infusions and so far no side effects as far as I know. But I did have a sinus infection that tried to turn into pneumonia. I kept thinking the symptoms were just the Opdivo causing my allergies to act up. Finally went to see my PCP and she put me on an antibiotic. Feel world's better. My Oncologist knew my symptoms and he also never seemed concerned. I think they're just focused on the cancer. And I had a bad cough. Thought that was the my asthma or maybe the lung cancer. Happy to say no cough now. No sore throat. No yellow mucus or nose running like a faucet. Could he possibly simply have an infection? Might see his PCP and have that checked out. Don't know about him, but my white cell count is still a bit low from chemo and radiation. I've decided that because of their specialty Oncologists tend to see zebras not horses and I need to just go see my PCP sometimes. Hope that helps. Judy M.
  19. Voice loss/hoarseness a side effect of Opdivo?

    Tim, Well the CT test result contains good information. I wouldn't know of Opdivo side-effects but I'm betting he's got a chest cold. Stay the course. Tom
  20. SCLC- PCI - Final 5 - Done & Done

    Hi Leo, Wonderful that you are DONE with PCI. Yay! Sounds like things are moving right along for you. May our friend NED be with you for a long time. Bridget O
  21. My father completed his 4/6 treatment of Opdivo two days ago and has come down with hoarseness, some green mucus, and a little big of a cough. Last CT (01/05/2018) read "Activity at ill-defined density in the right upper lobe posteriorly more likely infectious/inflammatory than neoplasm." He mentioned the green mucus to his onc. the other day but he didn't seem concerned. Are these typical side effects? Will his voice clear back up?
  22. Today I completed the final 5 days of my 10 days of PCI , a preventative step to reduce risk of brain Mets associated with Small Cell. This is a low dose whole brain radiation (25 Gy in 10 fractions (2.5 Gy per session) treatment. My last 5 days/treatments have been nearly as uneventful- as the first five. The fatigue picked up in week two and skin redness/irritation on neck & head extended to my face. I managed this and continue to manage this using Aloe Vera, Aquaphor ointment spray and Bag Balm skin moisturizer interchangeably. I went from sleeping 6.5 hours a day in week 1 to 8+ hours in week 2. Also my dose of Memantine doubled this week (1 5mg pill 2x per day) with no increased side effects. My dosage will increase again in the coming week (week 3) and then drop back in week 4, after which the medication will be discontinued. My hair is intact at the moment, but I’m told it’s going at some point soon (it actually got off to an early start in my 30’s) Midweek, a CBC was taken to measure any effect on WBC count (expected to be minor) I continued my daily brain exercises through Lumosity, and online tests/exercises through Cambridge Brain Tests. While early in the process, I have not experienced any short term memory related side effects, balance issues etc but will continue to monitor that. My next follow up with Radiation Oncology will be May 1 (6 weeks) , following my first set of new tests since NED (PET/CT -Skull to knees) and Chromogranin A (CgA) neuroendocrine Tumor marker (serum) & CBC , scheduled for 4th week of April. - I think the wait between NED and new tests is the most anxiety laden - Once again, happy to answer any questions about this, my SCLC diagnosis, treatments etc.
  23. Carboplatin and Altima chemo

    Thank you Susan. I was scheduled to return Monday to see radiologist. I explained it's a 3 1/2 hour drive each way....often overnight hotel stays. I asked that they combine radiologist appointment with oncologist appointment. Now in two weeks I have radiologist on Tuesday at 1 and oncologist the next day at 4:30...two nights at hotel. Yes, the radiologist should have been added to my appointment Wednesday. I don't know much about chemo plan. I do see my local oncologist next week. I will check out website you noted. Thanks again.
  24. Mally

    Mally, Relax. Opdivo is an immunotherapy drug. I think you may be confusing immunotherapy with targeted therapy. In targeted therapy, tumors are tested for certain biomarkers or mutations, then special therapies are used when one of these mutations is revealed in the biopsy. These special therapies then attack the tumor through the portal of the identified mutation. Your treatment -- immunotherapy -- does not work the same way. Opdivo enables the immune system to recognize and attack cancer as an invasive disease. The classification of Opdivo is an Immune Checkpoint Inhibitor and it's name reveals its function. It keeps proteins in the immune system from hiding the cancer so the T-cells (in white blood cells) can find and destroy the cancer. During my chemotherapy treatment, I normally saw my medical oncologist at the mid point of treatment and after treatment and after diagnostic scans were performed. So your consultation schedule, if I understand your description, sounds like mine. You might try asking some of your questions to the oncology nurses during your infusions. I found my oncology nurses very knowledgable about cancer and the drugs I was receiving. Stay the course. Tom
  25. Happy Spring!

    Wow !!!!! I thought North Carolina had a problem making up its mind, but New Jersey might be worse.
  26. Immunotherapy for SCLC

    Quick question: I was wondering if anyone had any experience to share with immuno or targeted therapy for SCLC. A few trials have shown efficacy of Keytruda and Opdivo in SCLC under certain circumstances. Previously, there hadn't been any signs of it working, so SCLC typically isn't even tested for genetic sequencing, protein expressions, etc. So, we're now in the process of getting the testing done for PDL1, TMB and genetic sequencing. Has anyone here taken Keytruda, Opdivo or anything else for SCLC? Any results to share? Experiences? Anything you can share would be very helpful.
  27. Mally

    I dont even understand the mutation part and was wondering if i would be given opdivo if i didnt have the right mutation ? I feel like a deer caught in the headlights too scared to ask dr things incase i dont like what ill hear and the dr is quiet and doesnt ask me anything except How am i and that ill have scans after 6 doses of opdivo
  28. Mally

    Ive been thinking about my visits with my oncologist and i dont see him again until may 2nd after i have scans done and my last appointment was march 14 th so does that sound like normal protocol ? I ask the nurses about my blood tests and they are all good but any questions are left until i see him again .i guess theres not much he can do but sit and wait for scans and hope the opdivo is doing its job
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