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Sally Lash

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Everything posted by Sally Lash

  1. Glad you’re feeling better! Try to enjoy the break from treatment.
  2. Yes I am on sucralfate, same as carafate. Started it when esophagitis reared it’s painful head. The GERD was worse for me also, the acid going all the way up my nose is like fire! They started with Sucralfate, which you put in water to dissolve and drink slowly before meals and before bed. Then added Pantoprazole and Famotidine, both twice a day. No magic mouthwash, wish they had. My radiation was also shorter. Do you dissolve Carafate? My esophagitis is almost healed and the GERD is getting better. I feel for you so much! It is sh#**y side effect for sure. Palliative care sounds like a promising option. Either road will be sending positive thoughts.
  3. Good news! Had my scan Monday and my tumor has shrunk! I do have pneumonitis in both lungs but it aspiration pneumonitis from the GERD and not from the radiation. My lungs have become more fibrous and I will be getting a scope to check on the esophagus but I’m very relieved and hopeful. Thank you, thank you to everybody who reached out, you kept me sane! Peace p.s. Oh and the radiation even shrunk some of my sarcoids!
  4. Yes still hopeful about original diagnosis. My one advantage to having sarcoidosis is getting scans every six months to a year for over 18 yrs. Anything changes it’s biopsied. Sally
  5. Hi Tom, I did have the SBRT, I had five treatments lasting approximately 40 mins each. About two weeks after SBRT I started to vomit, it felt like GERD pain not what I had heard pneumonitis felt like so we started treating it as GERD, a stricture was then diagnosed. Was having lung pain in right lung by then, not terrible though. Had the swallow study, gastroparesis. Ignored that and continued with GERD diet. Started to cough spray blood with pain now increased and radiating to both lungs. They feel the GERD or the SBRT or both caused the pneumonitis, most likely from aspirating vomit. X-ray showed fluid. Getting CAT today. All of you have helped me not get over my skis. I even felt better yesterday so my optimism is on its way back! Thanks everyone I truly appreciate all your wisdom and well wishes. Sally
  6. Hi Tom, Well they finally are on a track of what’s going on. They believe I developed a structure in my throat from GERD. The GERD caused the vomiting with nasal cavity impact. Swallow study showed Gastroparesis. The diets for gastroparesis and GERD are almost the opposite of each other so went with GERD diet. GERD slowly got better but with that they learned I had lung pain and was coughing up blood. Found Pneumonitis in both lungs from either radiation or aspirating vomit or from both. Am now on steroids (allergic to prednisone) 2 antibiotics, cough medicine, benzonatate pearls, anti-nausea, 2 protonixs. Last Thursday they said it didn’t seem that I was getting better so I am having a CAT on Monday 4/26. I am really nervous they are going to find the tumor has grown or spread. I’m hoping for pneumonia I guess. I think I might be too much in my head. Can you recommend anything to read about changing your outlook when your treatments are almost worse than the cancer. I know you’re not a pharmacist or a doctor but you are so knowledgeable. I’m sorry for this rambling vent, I usually try to keep my fears to myself, not so successful with that right now. Thanks for listening even if you don’t have any advice it’s comforting to know this forum is here. Sally
  7. After a rough weekend my doc has scheduled a cat scan and a swallowing study. They don’t believe radiation is the cause but might be a contributor in whatever is going on. Thanks
  8. Hi Tom, You seem to be the quite knowledgeable about SBRT and I’m quite the novice so if I could pick your brain I’d appreciate it. I finished my 5 treatments of SBRT radiation for nsclc in my lower right lobe January 29. I am not a good candidate for surgery, I have Lupus and Sarcoidosis in my lungs so radiation was decided. Did you have nausea and vomiting afterward? I’ve been put on anti-nausea med that helps sometimes but every time I cough I whoops ( nice way of saying vomit). I also have extreme fatigue but I think this might be exacerbated by my lupus. Does any of this sound normal? If so how long does it last? My docs are conflicted. My nurse navigator even said she feels that if you’re feeling poorly the radiation is doing it’s job! Thanks
  9. Smoked for close to fifty years... even writing that makes me queasy. For me what is working is two patches and a blu fake cigarette for emergency cravings and changing my routines. We aren’t weak we are drug addicted! Every minute you don’t smoke is the start of overcoming nicotine.
  10. Hi KizzyMittens, I’m also relatively newly diagnosed, squamous small cell and new to this site. Keep a list of your questions, see if you can bring someone so they can write down the answers, if you can’t, tell your doctor you will have someone on speaker that will be part of the discussion, record your visit also. He can not just walk out at the 15 minute mark so keep talking. Ask for a nurse navigator to call you twice a week to check in. I was a great advocate for my parents but not for myself. The folks here gave me a good shake to wake up thank goodness. I even told my doctor to change his attitude with me or I’d be finding a new doctor. Lucky for me he didn’t throw me out of the office but instead thought it was amusing and now we both look forward to my appointments. If your doctor can only give 15 minutes speak up and say you need more time than that. He might think you are ok with such a short appointment. You won’t know until you ask. I agree with everyone about Dr Google, the internet is not our friend.
  11. Sally Lash

    IMRT

    Changed my nurse navigator today! The new one seems very knowledgeable, seemed to be asking me every question imaginable and is going to meet at my CT tomorrow to introduce herself. She told me I can request a copy of all my reports, the doctors notes and to request that going forward I want all things in the future. This way if something doesn’t make sense she will go over it line by line with me. I originally had confidence in my radiology oncologist. He’s the head of the department so I thought great but now I’m thinking he might have too many patients and might be letting things fall through the cracks ( like me!). Have a conference call scheduled for tomorrow with him. Going to lay it all out. Called my second opinion doctor and asked if things didn’t work out with this doctor could he take me on and start treating right away. He said yes so we’ll see where I land. Rower Michelle I think my bad experience might be related to the COVID pandemic like your mom’s. Thanks for all the encouragement everybody, it really helps!
  12. Yes I’m in the states. I am definitely going to be be a better advocate for myself going forward. Will be contacting my docs and telling them they need to do better and definitely asking for a new nurse navigator. I am so thankful I found this site and these forums, they are so helpful, it should be required for all newly diagnosed! Thanks
  13. Sally Lash

    IMRT

    You are 100% right! I’ve been a medical advocate for both my parents and my brother and I never would have let them be treated like this during a serious health issue. First thing tomorrow I’m requesting a different nurse navigator, and a phone conference with my radiologist ASAP. Really sad when you forget to value yourself as much as you value your loved ones. Thanks!
  14. Sally Lash

    IMRT

    Yes I’m in Ct. Called the CT center on my own, they have an opening for this Wednesday, they let me have it. Called my radiologist to tell them I got an appt sooner, “It is our job to line up your treatment schedules, not yours” Me “Well I think you stink at your job since you told me there was nothing available till the 22 and I got one for Wednesday”. Hope I didn’t make my situation worse.
  15. Sorry if this is a repeat, I think I posted in the wrong place. Went to have my tattooing and mapping with the CT to show where the tumor is when they stopped and the doctor came in and said the tumor has grown significantly and I needed a diagnostic CT with contrast ASAP. Tumor found September 2, PET and biopsy in November. With the holidays and COVID I can’t get an appointment till mid January. I’m really scared while this is taking so long for any treatment it’s growing fast. Is it normal for a plan to be decided on and implementing?
  16. Sally Lash

    IMRT

    Went to have my tattoo and mapping for radiation with the CT they use to line up everything when they stopped and the doctor came in. He said my tumor has grown significantly and they needed to do a diagnostic CT ASAP. With this being the holidays and COVID I have to wait ten days before I can get an appt. My tumor was found in September, biopsied in November and I still haven’t had any treatment. Does it usually take this long to start treatment? Getting freaked out
  17. Hey Conor, New to this site but I thought I could share my brothers story, might make you a bit more hopeful. He was 28 when he was diagnosed with an adolescent bladder cancer that had spread to his prostrate and spine. Since he was an adult with a juvenile cancer they couldn’t find a chemo protocol for him. He was told they it was terminal. He fought to be in every trial available, pushed into a few that weren’t too, asked for every experimental drug, told them he would be their guinea pig just bring it on. His MSK doctors made up his chemo as they went. Nothing was working. He was started on hospice care. Two weeks in he said he felt better, everyday after that he was getting better. Docs ordered a cat which showed shrinkage, surgery was now an option... long story short that was 30 yrs ago and he’s still a stubborn SOB but he’s here and happy. Sending you positive thoughts.
  18. Hi all, Not sure how to start my introduction so I’ll dive right in. I was diagnosed with Lupus years ago. My lupus has affected my lungs. My lungs are kind of mess; history of pneumonia, pleurisy, interstitial lung disease, and sarcoidosis. Because of all this I see a pulmonologist and have a cat scan every six months. I’ve had 3 bronchoscopes to check that my nodules are all sarcoids, which they all were until recently. Had my cat in June, all clear, started feeling extremely short of breathe in August with a wicked cough,  another cat. This one showed a 2cm nodule in the lower right lobe. It was decided to wait eight weeks for another cat but put on prednisone and antibiotics which can shrink sarcoids. October cat showed no change, November 2 PET, I glowed. The 24th had needle biopsy. Results are non small cell cancer stage 1 but an “aggressive” tumor. Pulmanologist and Thoracic surgeon brought my results to a tumor board. The board felt my lungs are too fragile for surgery and my outcome can filled with complications. Not worth it. First surgeon feels he can do the wedge surgery but thinks I should get a second opinion and go see a radiologist oncologist also. Second opinion thinks I should do radiation but get another EBUS first in case the cancer has snuck into one of the sarcoids. First surgeon doesn’t think I need an EBUS, either “do surgery or do radiation”. From what I understand if I get radiation I can not get surgery if it comes back. Is that true? Seeing radiologist on December 22. Very confused about my options, demand an EBUS? Risk surgery? get radiation? Also the tumor is aggressive, it grew in two months and it’s been almost two months since I was diagnosed. As I write this I kind of see that I need to make a decision and find someone who will help me implement my wishes. I know none of you are doctors but I’d love your opinions. Thank you for reading this long and rambling post.

     

     

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