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Showing content with the highest reputation since 07/23/2020 in Posts

  1. 6 points

    CT scan results

    Well, I saw my Onc today and got the results of yesterdays CT scan. She had told me last week that she was not very optimistic that the Keytruda was working for me. She based that on the one lymph node that she can palpate which didn't feel as though it had shrank any, but had maybe even grown some. She added that we would probably be switching to chemo therapy a day or so after the scan. I had my first taste of "scanziety" and I sure didn't like it. So, I get my blood drawn for my tri-weekly labs and vitals taken. And she walks in the room and, we are both wearing masks so I can't see her expression. Her eyes seemed to shine though and I was hopeful. She sits down in front of me and says, "I have some good news", and tells me that the scan showed moderate but definite tumor regression in the primary lung nodule and in the two lymph nodes. So, we will continue with the Keytruda regimen. whew.....thank you God. Please project this blesswing to my cancer brothers and sisters as well. amen
  2. 4 points

    Starting treatment

    @CLM I am officially one week in. I started with dull headaches over the weekend. I wonder what the new one will be later this week..... But my cough is almost gone! Jenny
  3. 2 points

    CT scan results

    Great news Jack!! Best, Ro
  4. 2 points

    Who has Small Cell Lung Cancer?

    Hi Steve! Im with you. My dad is battling SCLC. We got a clear scan of his chest/abdomen last week but this past weekend we learned he has metastasis to the brain. And bump in the road...radiation starts tomorrow. Praying for your wife! We’re in this together.
  5. 2 points
    During a Lungevity's survivors zoom meet-up we discussed how best to make personal medical history available if one is incapacitated and family members are not present. One can purchase bracelets that warn of specific medical conditions and allergies, but we lung cancer survivors often have complex medical conditions and side-effects that can complicate diagnosis and treatment by emergency medicine professionals. A survivor mentioned the Health App found on an iPhone, and sure enough, one was hanging out on my phone completely devoid of any information. No longer, now it contains my complete medical history, and I've set it so emergency medical personnel can access this information right from the lock screen without entering my password or using biometrics to unlock my phone. Here is what I put on my phone: My entire lung cancer treatment history, dates of treatments, drugs used, types and areas of radiation administered Other chronic medical conditions: sleep apnea, Sjorgren's Syndrome and the like. My surgical history, types of surgeries, and dates Chronic pain conditions and locations Hard IV stick Intubation requires a small endotracheal tube Medication allergies Prescription Medication taken by type of medication and dose Blood Type Height, weight Two emergency contacts, by name and phone number Other models of cell phone have similar capability. Use this technology feature. It may save your life. Stay the course. Tom
  6. 2 points
    Yup, and after we got off the call I figured out how to set it so it's accessible from the lock screen. Obviously there are privacy considerations, but all things considered, I'd rather risk a bad guy knowing who my doctors/meds are than have a problem and no way for the first responders to access my info. Obviously, you shouldn't include anything like your SSN or banking info, but there's no reason anyone would need that anyway. And it might be smart to simply list your age rather than your DOB, which can also sometimes be sensitive. Just use good sense and don't include anything that could potentially harm you if it were improperly accessed.
  7. 1 point
    Hello, I am facing lung surgery. Had a biopsy on upper right lobe--inconclusive, but mentions Atypical Adenomatous Hyperplasia: AAH and a well-differentiated lepidic-type adenocarcinoma in situ (AIS). I also have an area in lower right lobe that has been stable for 16 years but is now showing more "activity" on PET scan. It has not been biopsied Have met with 1 surgeon who says he would take out both areas at same time--fine by me--get them out! He would do wedge resections, probably removing about 1/5 of each lobe. He says, and I agree, it will be 1 procedure to accomplish both removal and biopsy, instead of another biopsy then follow with surgery. NOW, the news I didn't want--he says he'd do a Thoracotomy, which I don't want. I expected he'd do VATS so was surprised. I have appointment with another doc next week and am hoping he will offer VATS. IF both docs say it HAS to be Thoracotomy, I have no choice. From everything I read and hear and see here, VATS is the way to go if you can. I am trying to find out if VATS can be done on both lobes at same time? seems it should be able to, but I can't find anything online. Has ANYONE had VATS on 2 lobes? ALSO, have those of you with wedge resection and VATs been able to fly on planes OK? That is a concern also. REALLY would appreciate any info. you might provide---personal experience is always better to learn from than what you read or even what the docs gloss over...THANK YOU!!
  8. 1 point

    Who has Small Cell Lung Cancer?

    It's kinda hard to keep up with those who have SCLC or loved ones with SCLC, especially when this subgroup is not used. It would be nice if a few of you would comment here to let those of us know. Steve
  9. 1 point
    Hi Elaine: Sorry to see you here but you come to the right place. I was diagnosed with inoperable lung cancer around the same time you were. This coming Thursday will be my second round of triplet (Keytruda and 2 chemos). Needless to say I was devastated at first but after joining this forum I learned from the very caring and knowledgeable members that cancer is indeed beatable. I encourage you to read all the threads especially those written about chemo and Keytruda. You will find plenty of information to put you at ease. While treatment is not easy, there are plenty of new ways to cure cancer. I wish you the best.
  10. 1 point

    Side effects

    Hey Tom ... My wife wasn't a fan of the magic mouthwash with lidocaine. It barely worked and the numbness did scare her a little. I sure hope the pain gets over quickly. Steve
  11. 1 point


    Since this thread was pulled forward I thought I would add to what Judy posted. My wifes esophagus was so bad that the only thing helping was oxycodone. At one point a surgeon put a camera down her throat to check for a constriction. I was sure she was going to have to have a balloon placed in her throat to expand a constriction. The surgeon saw an angry red path through her esophagus with no constriction. It took a couple of months after radiation stopped before coming off of pain pills. Her esophagus is doing well now with no lingering effects. Steve
  12. 1 point
    Thank you LouT and BridgetO. This has just been a whirlwind. June 11, I was me, after that, it’s been me with cancer. It’s not been an easy adjustment. I do have my sister, and she is a God send! The kids are grown, and are also amazing. I’m very lucky. My husband can be difficult, but that’s our dynamic, and he’s doing the best he can. I’m the glue that has held the family together, so we are all scrambling. I’m trying to sort through the guilt and fear. I’m more afraid of letting my family down, than I am of the cancer. Guilt, seems to be the strongest emotion, thus far. I’m on a Keytruda study, and in a couple of weeks, I’ll be getting a chest ct to see if the tumor is shrinking. If it is, that means I’m responding positively to the Keytruda, and the pleural effusion would go away. Then I can get the chest tube out! That’s in a perfect world, but I live in this world, lol. So I believe my next infusion will be Keytruda and Chemo. Not sure what the name of the chemo is though. The Dr will go over all my tumor info next time I see him, so I’ll know more about that, soon. Thank you for listening.
  13. 1 point

    Starting treatment

    Thank you so much! I’m seeing a nutritionist next week so asking about Dr Weil’s program is a great question! I can’t wait to check out these books. Thanks again! ❤️Christy
  14. 1 point

    Starting treatment

    @Rower Michelle Hi! I wanted to thank you for the book recommendation of Something More Than Hope. I think I’ve written down or ordered at least three more books the author talks about. I’m really liking Dr Weil’s breathing exercises in Spontaneous Healing that she recommended. Thanks again! If you have any other recommendations, would you mind sharing? ❤️Christy
  15. 1 point
    Rower Michelle

    Starting treatment

    Hooray for almost gone cough!
  16. 1 point

    Introducing myself

    My mom aged at 68 was a healthy person. All of sudden she had a fracture in hip and a compression fracture in spine February. Later, after the CT scan, she was found a 3.5 hilar mass in the right lung together w other nodules in both lungs. Immediately my mom got a surgery to fix the hip on 2/13, and during the surgery biopsy was obtained. She was later treated by xalkori due to her met 14 skipping mutation. Her ALT and AST were elevated due to xalkori, and doses were reduced until June when the ct scan found tumor in left hip has grown from 1 cm to 1.6, although the 3.5 Hilar mass as mentioned before was shrunk (it grew to 4.1 from PET scan). Dr switched her medicine to Capmatinib. She has no serve side effect on Capmatinib except some rash. She is still feeling some discomfort from her right leg, and the dr is worried Capmatinib may not be strong enough. The main concern is if her discomfort in right leg is from cancer growing or muscles recovering from the surgery and radiation.
  17. 0 points
    Hello, my name is Elaine. I’m 52. On June 11, I went to the emergency room because I thought I was having a heart attack. I was not having a heart attack. The x ray showed that my IVC filter had broken apart. I also had a pleural effusion. The pleural effusion was drained and biopsied. They found a tumor on my right lung. I was diagnosed with Stage 4 Lung Cancer with Malignant Pleural Effusion. My cancer spread to my pleural space, and is inoperable. My PDL 1 is over 90%, so I started Keytruda and hopefully I’ll respond positively. I have a PleuRX catheter in place. That was a shi_ show, because the tube is resting on nerves, because I’m thin. It’s quite painful. I’m disabled because I can’t walk, and now I can’t get around on my crutches, or use my wheelchair. I’m pretty much overwhelmed. Thanks for listening. Peace and positive vibes to all.
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