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  2. Thanks folks... I'm hoping as Duva and other new meds put more people into NED we see OS and PFS extended to lifetime PFS for us all. The numbers say there is an 85% chance that lung cancer will come back within 2 years after NED, I missed 2 years by 2 weeks. Then 1 year 2 months... My numbers are based on when after treatment was Wait and Watch, now many new things like Duva. I don't want a return next year. I can see by the progress reported here that this is working for many and you will soon be part of PFS for a lifetime.... Happy thoughts
  3. Isabelle, During my chemo, I lost so much interest in food my wife (a dietician) and doctor really didn't care what I ate, just that I consumed lots of calories. Chemo kills all kinds of cells and the body requires energy to replace the good ones. I have several chronic pain problems, and my GP prescribed Xanax to help me relax at bedtime so hopefully I can sleep. My nightly dose of 0.05mg usually works. Sometimes I need to increase it to 1mg and I've been taking it for years. I never had a fluid retention problem with chemo so I don't have experience with Lasix. But I hope you keep the fluid off. Stay the course. Tom
  4. Oh Tom that sounds amazing. Had my husband pick up a bag of the small dark chocolate York peppermint patties. Those did not lose their flavor. Also got some mandarin wedged in cups, but kind of sweet. Think I will go see what is fresh and I can peel. I could do without all the sickly sweet sugar that shouldn’t be there. Tonight won’t be the healthiest of dinners, but packed with calories: Burger King Big Fish , fries and Shake. It’s been more than a year since I had any fast food, and thought what the heck might as well try. Tom when you mentioned the peppermint extract, is it the kind that is in an alcohol base and not a sugar base. I have the alcohol base kind. I think that would surely shock the tongue. Oh, I must mention too that the doc gave me 0,5 mg Xanax for anxiety/sleep. I’ve only taken it a night for sleep. I have found that I seem to wake up sort of hung over and not wanting to eat and grouchy. So, I took a Xanax earlier today, about 11 and have eaten more and obsessed less about how bad what I am eating tastes. I think Xanax at night for me is a no go. As long as I am breathing ok, no problems sleeping and since I got rid of 9 pounds of fluid last week with lasix I am breathing as good as I as before the bronchoscopy. With the next round of chemo I will be doing some brain picking to make sure I don’t get fluid overloaded again. That was horrible. I couldn’t walk, had to be in a wheelchair. Never again!!! Thanks much. Blessings.
  5. NGW, Welcome here. What subtype of NSCLC was diagnosed: adenocarcinoma, squamous cell or large cell? If the subtype is identified from the biopsy, I'd press for designing a treatment plan and performing a second biopsy. Then I'd start treatment while the second biopsy is scheduled. Did he have a needle biopsy? If so, sometimes this type does not obtain enough material for both a visual examination and laboratory testing. Stay the course. Tom
  6. Isabelle, I had the same trouble during my chemotherapy. My wife made me homemade mint chocolate ice cream and crushed Oreo cookies in the batter. It was my breakfast, lunch and dinner and the only thing I could taste. That is why I suggested peppermint. Stay the course. Tom
  7. Tomm, A NED scan indeed. How great is that? Stay the course. Tom
  8. msfroy, Welcome here. I'm very sorry to learn of your recurrence. They are indeed a major pain. I don't have any experience with immunotherapy. My chemotherapy treatments were almost 14 years ago and I had the old style Taxol and Carboplatin. But, many on the forum are involved with immunotherapy treatment and I'm sure someone will chime in to let you know of their experience. Stay the course. Tom
  9. They weren't sure if I had enough tissue either from my bronchoscopy, (they did) but told me I would just have to have another biopsy if that was the case. In my case they were not even looking for cancer.
  10. This story is about my encounter with cancer, which happened in 2014. I had a near-death experience, and was rushed to Kaiser Zion medical facility in San Diego, CA. My doctor, Dr. Tomssi met me in the ICU and let me know that my body was struggling with issues regarding the bowel. I was excreting dark colors, almost purplish in color, which indicated blood. I had lost about four pints of blood and it would have led to death. I think God saved me from that near-death experience. In February of 2014, Dr. Tomssi found evidence of cancer from lab tests and let me know about the results. Of course, I was very upset, I believed that my future was near its end. I was in shock, and to add more to it, I was required to use colostomy bag, receive radiology for chemo. All in all it was a shocking experience, and I naturally rejected the idea, because it was so uncomfortable. Dr. Tomssi encouraged me to explore those options because it would save my life, and prevent the cancer from increasing its stages. Dr. Tomssi mentioned that he had found something on my right lung that could be unstable later, so I should consider preventive measures. Dr. Tomssi encouraged that I lead a stress-free life and explore healthy lifestyle to prevent the stages from increasing. I naturally agreed. I had gone into bouts of depression and Dr. Tomssi’s office had tried to reach out to me for appointments and follow ups, to which I neglected. At one point I gave in and went to see the doctor, Dr. Tomssi was very humble and gave me positive spirits where he encouraged me to get a check-up for any cancer indications. Two days later the office reached out to me via phone and told me that I had indications of cancer in the rectum. I decided to proceed with radiation, chemo, and mental health counseling. I had regularly attended chemo therapy and saw Dr. Zimmer for the process, but my wife was controlling, and did not agree to the entire process. She did not believe the therapy would help fight cancer, my wife had the family move to Virginia then in Wisconsin during the process, so I lacked stability and support from home. My mind and body was equally weak and it felt like I was always in a body of water, my memory was always lapsing. My memory went away as did my body, it seems to be about sixty percent loss. In February of 2019, I moved back to San Diego, and Dr. Zimmer was my doctor again, and we had a scan again. It turned out that my cancer had progressed to stage four and instead of one spot, I now had six spots. I was encouraged to sign up for the LifeLine Mentor program and I was assigned with Melissa Crouse who is very humble and encouraging to me. My family is all very worried about me and is grateful that I have this kind of support from different agencies. This is especially important seeing as I had lost my son not too long ago due to suicide as a result of PTSD from the armed forces. I value the support I get from LUNGevity.org, and that place is where I feel at home, and safe.
  11. I had an xray for pneumonia. Radiologist saw something...so an MRI. I started with stage 1 non small cell lung cancer....3 months later...surgery and staged as IIIa 3cm + and lymph nodes. I have had chemo, radiation. I have had no evidence of disease for a year.
  12. I'm so sorry you have conflicting information from doctors. It's tough enough to make decisions. I wonder if both doctors agree on a treatment plan. Sending soft hugs and prayers.
  13. Taste still not working. Eating very small amounts a few times a day. I have a very strong gag reflex and that is a problem with certain textures and tastes. Difficult tasting food, kind of like having whole mouth dead from Novocain.
  14. HOORAY for you Tomm!!! You gave that cancer an eviction notice! YAHOOEE! All that hard work paid off!!! Here’s to your Hippie Protocol!!!!!
  15. Tomm-great news. Charles-hoping your TSH gets better soon.
  16. 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?
  17. Thanks Barb and Tomm, happy to hear the good news but limited as to how much celebration I can do for my good news due to Hypothyroidism. As of July 17th my TSH was 54 but actually having a little more energy and strength because of the hormone replacement pills so it's all good there, keep up the great work everyone!
  18. I was diagnosed with lung cancer in December 2011, after radiation my scan came back clean. In December 2018 cancer had returned , the tumor was larger and in the same spot as it was before , \ Because of the location of the tumor I could not have radiation. Immunotherapy was advised. I have had eight treatments and two scans. The first scan showed the tumor had not grown. Last Monday I had my second scan. I spoke to my doctor yesterday, the tumor had gotten larger. In 3 weeks I will return the doctor suggested another treatment and a scan. I have been treated with Keytrunda , I am starting think my memory is affected from the treatments. Has anyone else who has immunotherapy has experienced memory loss. " ":I want know what there experience is/was from immunotherapy... I think this would be very helpful for me ,
  19. Barb: cancer free weight gain makes sense to me with your progress, sound really good. Charles: way to go in the right direction from very large to a walnut. I just got my CT results ... I'm still NED! Infusion #7 today only side effect is fatigue. keep the good news coming fellow travelers
  20. I took my Mom to the ER last November. We thought she hasd a terrible case of the flu and was dehydrated. They got her right in and things started to happen pretty quickly. Not long after they drew blood the first time, The E R doctor told me she was either having or had just had a heart attack. And he also said her kidneys were shutting down. Talk about a shock! I said “Wait, what happened to the flu?”. I know, Dumb thing to say, right? Little did I know what was coming. They did a chest X-ray and within a short time after that took her for a chest CT scan. I thought that was odd but was still focused on the heart attack & kidneys. Again the ER doctor appeared and told me there was a mass in my mom’s lung and what looked like lymph node involvement. He went on to say that it could be very possible that she has lung cancer. I thought I was going to either pass out or throw up. Apparently the doctor must have read my mind because he asked me very nicely if I didn’t think I should sit down. Oh yeah, good idea! After a week she was released from the hospital. She then had to recover from the heart attack before they could do the needed biopsy. Finally in March they did the lung biopsy and on March 28th, she & I saw the Oncologist who told us she did in fact have stage 4 small cell lung cancer. Another huge shock. I had had 4 months to convince myself that she didn’t have lung cancer. No such luck. But she is doing well and I’m thankful for everyday she’s still here. On a side note, I think everyone on this forum is so brave and I am in awe of your never ending determination. The courage it takes to deal with cancer is shown here by everyone who posts. And you all give me the strength I need to have to continue the journey with my Mom. And for that, I thank you.
  21. Thank you Tom & Michelle. You both have been amazing!
  22. Last week
  23. Thank you sir. That is wonderful news!
  24. Implications of Durvalumab Following PACIFIC Update This is from the update. I think there’s no doubt in my mind that the results of the PACIFIC trial really bring us to a new standard of care in stage III disease in that the potential benefit in long-term survival and overall cure rates is so significant that the risks are really quite minimal in my opinion with regard to that thinking about the risk/benefits sort of thing. I think the investment, from the patient’s perspective, of committing to a year of therapy is not insignificant, but that investment does translate into a 32% reduction in the risk of death. That is very significant, and most patients with stage III non–small cell lung cancer, with a good performance status, their goal is to be cured. And when you say to them that they have a slightly greater than 30% reduction in the risk of death, that is significant to patients, and certainly the risk that we put them at with regard to use of checkpoint inhibition, I think, is minimal relative to that 30%, 30-plus percent reduction in the risk of death. https://www.targetedonc.com/investigator-perspectives/socinski-consolidation-nsclc/implications-of-durvalumab-following-pacific-update
  25. Welcome Joe. Good luck with your tests. We are here for you. This is the best place for support.
  26. Hello, 71 year old Grandpa just diagnosed with NSCLC that has spread to my spine. So new that not all of the Genetic test results are back yet. Just waiting on acceptance into an Immuno therapy program. People call me Joe amongst other things.
  27. 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. 😀
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