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  1. Today
  2. Eating better this week. Food tastes better. Tongue doesn’t feel as strange as it did for the first two weeks. Plan a trip to a Hispanic market tomorrow (I’m half Cuban) going to get some Cuban Crackers - not sure why didn’t think of them sooner. These are thick crackers, maybe about 1/4 inch thick, no salt and no sugar - sounds bland I know, but really good dunked in whatever you like. I eat them with philadelphia cream cheese and guava paste. I’m pretty sure I could chow down on these anytime. Guava paste is sweet, but not sickly sweet. Looking forward to finding other goodies that might make this next go round better. Also planning to make Flan this weekend, even though it is a dessert food, I think it is pretty good nutrition whole eggs, and two kinds of milk and sugar. Blessings to all.
  3. Yesterday
  4. Denise C

    Broncoscopy

    Anyone ever have a broncosocpy peformed and the thoracic surgeon say the lymph node looks suspicous but the pathology report say the lymph node is not cancerous?
  5. I had my annual check-up and told my PCP that I had pulled a muscle in my mid-back. She ordered an x-ray and then a CT....bronchoscopy....PET. Diagnosed with Stage 1B. Had absolutely no symptoms.
  6. Hi Claudia. The, “there is a spot on your lung” is scary and shocking. Mine was found peripherally on an abdominal scan for something else. We watched it for a year with no change. I opted to have it removed just in case. It turned out to be Stage 1A Adenocarcinoma NSCLC. I had an upper right lobe lobectomy. You mentioned finding the 3cm mass by accident. Did you have any additional testing for a diagnosis?
  7. NGW, Glad to hear that a treatment plan is in place and you are pursuing another biopsy. With all of the new biomarker and mutation testing, it will benefit you to have a full work-up. I think everyone here have questioned their decisions during their diagnosis and treatment as you are. So much information is thrown at you and many times is sounds like a foreign language. As you ease into your treatment plan, things will settle down, at least it did for my mom. She received the same treatment for her lung cancer recurrence that you are currently planned for. She had great success with it, like many others. She took a total of 6 Keytruda + chemo infusions and then went on to Keytruda only for about 1 year. She has had no evidence of active cancer for over 1 year (it might be close to 2 years, I need to check my math!). My mom ultimately went off of Keytruda due to side effects, but many people are able to stay on the drug for quite a long time, with minimal side effects. If this is indeed the treatment you will continue with, you are receiving the standard of care. Here's the basics of your treatment plan: basically, Keytruda will ramp up your immune system to kill cancer cells and the chemo will move throughout the bloodstream cleaning up any straggling cancer cells hanging out (that is how it was described to us anyway!). If you have a high PD-L1 score, this means that the cancer cells are really good at hiding, Keytruda specifically removes the cancer's ability to hide so your immune system can find it and kill it. Should your lung cancer be a good fit for this treatment, you are in good hands with it (that's my opinion anyway!). Please keep us posted throughout your journey and please know we are here to help any way we can! Take Care, Steff
  8. Claudia, I'll add my name to the "surprised" list of diagnosis. I had a battle with a kidney stone and they did an abdominal CT Scan and a nodule in my right lung was picked up by the radiologist and I wound up at a pulmonologist's office. He did a PET which was 2.3 so inconclusive and then they did an open-thoracic biopsy (essentially the lung surgery) where they confirmed a diagnosis of NSCLC squamos and removed my lower lobe. What a crazy ride it was, but to have been diagnosed at Stage 1a was a blessing that so many others aren't afforded. Lou
  9. Last week
  10. We are all here for you. I'm new here also, and this group is my rock when I just need to reach out.
  11. Thank you for your response Tom. I, too, am skeptical of all "miracle cures". I just thought I would ask here to see if anyone had anything to say. I always appreciate your posts. Claudia
  12. I am on Keytruda/Pemetrexed/carboplatin. Only one treatment so far. 21 days between each for a total of 4. I felt tremendous after the treatment and had zero side effects. Without saying the words, he indicated it was a hail mary mixture, as I showed up for help in end stages. Other than my cough(which has been cut in half) and getting tired pretty easy, I'm doing fine. As a matter of fact, he told me to walk daily now. Before I needed help to get to the ladies room. I won't be medically cured, but between prayer and attitude, I see life as worth pursuing again. In my opinion, we just keep trying new things until they run out of new things. My doctor said new trials are coming to market all the time, and each person is different.
  13. You're doing great! Make your decisions....run with them.
  14. Wow! Pneumonia on top of this would be tough. Soft hugs to you. I decided to do the second biopsy sooner rather than later so that I’ll have more resilience to get through it. I hope I’m making the right decision.
  15. Claudia, I’ve not read the book you mention but many like it. I’m very pleased to learn you are consulting with your physician before you try any of the “curative” diet suggestions. During treatment, my problem was consuming calories because chemo really affected my tastebuds. I also wonder at the top level how it is possible to starve cancer without starving the body. I am unusually sensitive about people who publish the “I have a cure” book because a close friend believed, denied conventional treatment, and died well before his time. Stay the course. Tom
  16. Hi Everyone! I came across a book called How To Starve Cancer by Jane Mcellend and it is very interesting. The author had stage IV lung cancer and through conventional and unconventional therapies has gone into remission. I haven't finished it but so far it seems to rely on a low carb, no sugar mediterranean diet and supplements to help chemo and other cancer treatments to be more effective. Things like taking low dose Asprin and Tagamet. I hesitate to jump into things that are just out there on the internet. I was wondering if anyone has read it or followed the diet and supplement plan. Yes, I will ask my dr but I'm interested in what you knowledgable people have to say about it. Have a beautiful day, Claudia
  17. Roz

    New member

    Denise, Welcome and please know that all of us are thinking of you and hoping that things improve for you. So sorry to hear about your pain and the meds withdrawal! I was also diagnosed Stage IV adenocarcinoma in August 2017... Sending you all the best of wishes!! Ro
  18. Hi my name is Denise. I was diagnosed with Stage IV NSCLC Adenocarcinoma. I'm 54 yrs. old. I've had a lot of medical issues since May when I was diagnosed. It started with a simple chest X-ray. Doctors found a blood embolism in my right lung. Further test, found a mass on my right lung. We went to Fox Chace, found the cancer metastasized to my brain and lymph node. Then fluid built up on my lung. I had Thoracentesis. The doctors drained 4 pints of fluid off my lung. The pain was so unbearable, that the doctors gave my the Fentanyl patch for pain. I wore the patch for over a month, until the pain subsided. Then weaning off the Fentanyl was a nightmare. The withdrawals were unexpected. I'm still dealing with minimal withdrawals. Doctors gave me Oxycodone to relieve the withdrawals. It's been a visuios cycle since the beginning. I've have more worse days then good days. Thank you for welcoming me.
  19. Hi, I was recently diagnosed with Stage 4 NSCLC. Tests ruled out the most common genetic mutations but the biopsy didn’t have enough tissue to make sure about some of the rarer mutations. I don’t know why the biopsy failed. One doctor thinks I should have another biopsy done the other doesn't. What makes a biopsy fail?. Thoughts anyone?
  20. Hi Everyone! I was scheduled for shoulder replacement surgery last February and had to do a pre-op chest x-ray. It showed a 3 cm mass in my left lung. I had no symptoms and was totally shocked by this diagnosis. I am wondering If there are many others who found out about their LC while looking for something else or by surprise. Have a beautiful day. 😀
  21. Earlier
  22. After the first round of chemo, I have a non working tongue. Everything tastes like cardboard and is nauseating. I can only tolerate very tiny amounts of food, in spite of the phenergan. No vomiting though, thanks goodness. First cup of coffee today in 4 days, tastes like warm air over my tongue and this coffee is made from very dark espresso beans. Any suggestions on how to jump start my taste buds so I can eat again!!! Thanks and Blessings to all
  23. Hi my Hubby was diagnosed with stage IV lung cancer in Aug 2017.He was put straight on a targeted treatment "Tarceva" which he has been coping pretty well with. Unfortunately after his last scan he has been told the the cancer in the lymph nodes is growing which means the Tarveva is not doing its job anymore. His options are to stay on the targeted drug, to start chemo or go on a trial. " ILLUMINATE" which is a mixture of immunotherapy(Durvalumab and tremelimumab) and chemotherapy. (Cisplatin or carboplatin). We are in Australia and believe this has already been trialled elsewhere. Would be interested to hear from anyone who has experience this trail
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