Deb514 Posted April 29, 2019 Share Posted April 29, 2019 Want to say hello to everyone. I have read everyone's posts. My name is Debbie and I was diagnosed with sclc mid March. My story starts in January when I was admitted to the hospital for a critical sodium level. I had labs in December and it was normal. I then begged for a chest CT as well as a brain scan. I am a ICU nurse at that same hospital. I was in SIADH which causes you to deplete your sodium. My tumor was making ADH which caused me to urinate more frequently and loose my sodium. I stayed in the hospital 3 days and was released on sodium pills and 1000 cc fluid restriction. I made appointments with my PCP, my hematologist (was seeing for iron deficiency) and my Pulmonologist who I saw once a year for mild COPD. None of them saw any need to do a Chest CT. In December they found a small nodule in my R lower lung thought to be infection or inflammation. In December I had a stomach virus and they thought I aspirated while vomiting. I had to fire my PCP and found another one who did MRI of brain and CT chest. My tumor on CT March 7th was 7.5 x 5 cm. I couldn't see the Pulmonologist until the 15. I was extremely sick and O2 sats would fall to low 80s. On March 12 I went to the emergency room and paged our hospital Pulmonologist. She immediately came to me in the ER waiting room. I had bronchscopy on March 13, saw oncology plus had bone scan and abdominal pelvic ultrasound and a port placed on 14th and chemo cisplatin and VP 16 on 15th to 17th. I certainly had the right person on my side and I so wish I had called her in January. She took such good care of me. It is limited to right lung. I am having 3rd chemo today and have had 15 radiation treatments with 20 more to go. I am pleased to have found this site. Link to comment Share on other sites More sharing options...
LouT Posted April 30, 2019 Share Posted April 30, 2019 Hi Deb, Glad you found the site. I'm new here as well and scheduled for a wedge biopsy and (90% probability) lobectomy on Thursday, May 2nd. But I can tell you that this site has helped me more than I could expect. There are so many experiences and stories of recovery here that it has helped me to face this disease differently than I could have hoped for. I pray you'll find the same kind of support here. While I'm just beginning my tale I can already say that your situation reinforces the fact that we have to be our best advocates and keep tabs on what is being done for and to us at all times. I look forward to watching a successful outcome unfold for you. Lou Link to comment Share on other sites More sharing options...
Curt Posted April 30, 2019 Share Posted April 30, 2019 Hi Deb. Welcome. That’s quite a journey you’ve had so far. Unfortunately it’s not uncommon, especially with something as elusive as lung cancer and the other ailments you’ve mentioned. It is a surprisingly difficult disease to diagnose given where it is in the body. It took me almost a year and surgery to get a def diagnosis. As Lou said and you’ve done, advocating for yourself or having someone who will advocate for you makes a big difference. Good luck with your treatments and check in here to give us updates. Link to comment Share on other sites More sharing options...
Deb514 Posted April 30, 2019 Author Share Posted April 30, 2019 Absolutely we all need to either have an advocate or try as I did to advocate for my self. I just kept trying till I finally got someone to listen. SCLC is so fast spreading that often isn't found till it is extensive. Kinda bummed today no chemo this week. My counts were down. Hopefully they will be up next week. Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 1, 2019 Share Posted May 1, 2019 Hi Debbie- Just wanted to say hello and let you know I’m also a member of the misdiagnosis club. By the time we got to the biopsy (after 9 PCP visits for allergies that didn’t exist) the radiology interventionist thought I had aspirated something into my right lung. My PCP was following the Harvard cough protocol. She had also wanted to try GERD meds. Yes, I fired my PCP too. It was a very smart nurse practitioner that ordered a CT scan. I receive treatment at a major academic center where now the young medical students are taught to be far more aggressive in evaluating persistent coughs. I’ve been interviewed by two medical students. I really hope some of these “best practice protocols” change more quickly. I hope your counts come up quickly. Glad to have you here! Michelle Link to comment Share on other sites More sharing options...
Deb514 Posted May 1, 2019 Author Share Posted May 1, 2019 Yes that needs to happen. I do intend to meet the hospital doctor who saw me in January. Not to be visious or mean. I want her to know what she missed. It might save someone else's life. My SCLC is limited but had I not pushed on it could of spread. So very thankful. Once to meet you, Debbie Link to comment Share on other sites More sharing options...
Deb514 Posted June 5, 2019 Author Share Posted June 5, 2019 Hi guys, it has been a long journey. Finished 35 radiation treatments and 4 rounds of chemo. Haven't had to use oxygen in 6 weeks or so. I know the tumor is shrinking. Had MRI and will start PCI head if clean. Pet scan on 17th. So scary. Link to comment Share on other sites More sharing options...
We got this Posted June 5, 2019 Share Posted June 5, 2019 Hi Deb, wow thank you so much for your post... yes very similar (left vs right). My 1/2 way scan showed shrinkage of about 50%. Started round 4 yesterday and cannot wait to ring the bell on Thursday.... had my vocal fold injection x2 and I can now talk after 3 months of not talking (whisper only) tumor was / is on the nerve. i follow up the Monday after you on the 24th and then see doc that following Thursday. we will keep you in our prayers for great results on the 17th..... God Bless Ken Link to comment Share on other sites More sharing options...
Deb514 Posted June 6, 2019 Author Share Posted June 6, 2019 You are right we got this. My MRI head was clear so starting PCI next Tuesday. Doc says there is 40 to 50 percent chance small cell goes to the brain but with PCI it cuts that down to 10 percent. I have had allergies and sinus headache so I was so scared. Having scope tomorrow to check for a stricture in my esophagus. Still having trouble swallowing. Just so happy today. So thankful our treatments are working. Link to comment Share on other sites More sharing options...
LouT Posted June 8, 2019 Share Posted June 8, 2019 Hi Deb, Thanks for the update. Wow, you've had a load of treatment and I couldn't be happier to hear that the tumor is shrinking. That is exactly what you want them doing. It must be a great relief not to have to use the oxygen now. I'm so glad to hear that for you. Okay, so now you are in the "wait for the next test" phase. These times/waits are always trying, but keep the faith, focus on the now, enjoy the time you have. I think I remember a post where the person said that they were so worried about the next step that they forgot to enjoy the time they had (maybe Tom or Curt). Try not to do that. Instead go somewhere you'd normally enjoy, laugh with some friends, see family, play a video game; whatever it is that makes you feel good. Then the test will come soon enough and you (and we with you) will wait for the results together. But stay positive, being that way releases so many good things in your body that is must be the right thing to do. For my part you're on my "prayers and thoughts" list. Lou Link to comment Share on other sites More sharing options...
Deb514 Posted June 13, 2019 Author Share Posted June 13, 2019 Thank you so much! Waiting is scary but it's all in God's hands and I know he isn't finished with me yet. I have started PCI and other than slight headache which my be sinus haven't had any problems. I am pleased to have each and every day. I so appreciate everyone here for their caring and kindness. Link to comment Share on other sites More sharing options...
Deb514 Posted June 22, 2019 Author Share Posted June 22, 2019 I am so happy NED. The wait was scary but so happy. Link to comment Share on other sites More sharing options...
Susan Cornett Posted June 22, 2019 Share Posted June 22, 2019 Fantastic news! Link to comment Share on other sites More sharing options...
Tom Galli Posted June 22, 2019 Share Posted June 22, 2019 Deb, NEDtastic! NEDstanding! Now enjoy. Plan a vacation, and... Stay the course. Tom Link to comment Share on other sites More sharing options...
We got this Posted June 22, 2019 Share Posted June 22, 2019 Deb ......Excellent news.... my scans are Monday.... praising your results today Link to comment Share on other sites More sharing options...
LouT Posted June 23, 2019 Share Posted June 23, 2019 DEB!!!! Congratulations... NED is the best. I'm sitting here smiling, I'm so happy for you. As Tom said, get out and have some fun. Celebrate every day...you deserve it. Lou Link to comment Share on other sites More sharing options...
PaulaC Posted June 23, 2019 Share Posted June 23, 2019 Awesome news!! Link to comment Share on other sites More sharing options...
Deb514 Posted June 23, 2019 Author Share Posted June 23, 2019 Thank you all. I am beyond thrilled. It's so scary It's my plan to travel as soon as I feel better. Last pci is Monday. This radiation esophagitis is terrible. I had EGD last Friday and GI doc said he couldn't do anything to help as I was so inflamed he was afraid I might hemorrhage. Taking 4 meds for it. Anyone got any suggestions? I am still real shaky and more exhausted with the brain radiation. So concerned about work too. Right now I certainly am not able. I am a ICU Trauma nurse. Gonna talk to social security this week. I so appreciate each and every one of you for all your support. Link to comment Share on other sites More sharing options...
LouT Posted July 5, 2019 Share Posted July 5, 2019 Deb, I've been offline for a bit so I hadn't seen your most recent question. Since my treatment is primarily surgical (at this point) I can't really offer any advice on the radiation treatment, but perhaps my posting here will bring the topic "to the top" and Tom or others who have had radiation can help you out. My prayers stay with you and your family. Lou Link to comment Share on other sites More sharing options...
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