Jump to content


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by Dona

  1. Dona


    Kathie so happy to hear about Scott's progress! Which immuno drug is he on and what is the duration? I start treatment next Monday, protocol: 1xweek low-dose Taxol/Carboplatin 5xweek targeted radiation for 6 weeks. My breathing has gotten worse, shortness of breath more common without exertion. I believe this may be.in part to the large wildfire that occurred here 3 weeks ago, the Caldor Fire. I was evacuated for 2-1/2 weeks and the air was extremely hazardous. Was coughing up blood for a good while, but it since has returned to clear (my poor lungs are trying hard to get the toxins out,lol). What I should mention is that my initial dx was SCLC, then after more stains were reviewed, dx changed to neuroendocrine, then once again changed to NSCLC. They just cannot definitively tell me if it is a primary LC or uterine met from 2000 cancer. But I'm told the treatment would.be the same for either cancer. I am so looking forward to treatment to get this nasty thing taken care of. Again, so happy Scott is.responding well! Keep us updated! p.s. not sure if I want the booster. On the fence. Onco suggests it, I'm not convinced I need it, or if it's safe. Dona
  2. Dona


    Kathie How is your hubby doing? I've been thinking of you. Dona
  3. Hi Kathie My visit with the oncologist has twisted my mind and I can't help feeling I'm back at square one. As a reminder, my July 29 bronchoscopy "bedside" biopsy came back SCLC. Then a couple of days later, pulmonologist states after additional slide stains, it is presenting as neuroendocrine carcinoma. Now a couple of days after that, the oncology virtual visit happens and after additional biopsy stains, the onco states both SCLC and NE carcinoma are coming back negative. We are still awaiting biomarker results and onco had me report to the lab yesterday for blood biomarker draw, as he would receive that quicker. As you can imagine, I am so confounded and feel like an emotional yo-yo. Gloom doom, hope, more unknown, etc. The onco called my case an "oddball" one bc they cannot definitively tell me what cancer I actually have. My pulmonologist took my case to the UCD Tumor Board on Wed where a multidisciplinary panel of about 25 doctors tried to assess the cause/type. Have not received any feedback yet. They have intimated that perhaps it's a uterine met from a previous gyno cancer in 1999, but thought that was highly unlikely. He said he's only calling it LC because it appears to have originated in the lung. So it's hurry up and wait. I have a PET next Wed and meet with a different onco Thurs. I hope to have more concrete knowledge at that time. I have stopped coughing up blood since the bronchoscopy and the cough has subsided, but the shortness of breath seems to be increasing. I am using an inhaler to mitigate the breathing issues. Thank you for checking on me, Kathie. How is your husband doing? I'm really curious to hear how he's holding up, as well as you! Dona
  4. Thank u so much for responding so quickly, Bridget. This cancer trail has so many twists and turns. Will definitely ck on the lungevity site to educate myself. I also have a consult with an oncologist tomorrow morning, and I hope I will glean more info at that time. Thx again. Dona
  5. Hi group My pulmonologist tells me that preliminary biopsy may not show SCLC, but neuro endocarcinoma. Has anyone heard of this? I'm really afraid to go to Dr Google. Thanks in advance!
  6. Dona

    I feel good

    Tom,glad to hear this!
  7. BroFTW, Pls keep us updated on your brother's treatment. The news appears positive at this point, so best of luck and prayers for continued positive news. Dona
  8. Dona


    Kathie, thx for the reply. U mentioned yr husband's 1st line treatment was chemo every 3 weeks, 3 days at a time. Was he in the hospital those 3 days or was it basically come in each day for the infusion? I imagine my initial treatment will be similiar to his. I go to my pulmonologist Aug 4 to hopefully go over the biopsy results fromä»–EBUS. Because his office is in the cancer ctr I'm hoping an oncologist will meet me as well. I want to get started on this! How are your husband's spirits? Hopefully he's keeping his chin up thru this and I'm sure your support plays a major part. Have u considered getting tested yourself, since u both were smokers? I believe insurance will cover tests for high risk individuals. LC seems to present symptoms once it has progressed. Take care and keep in touch! Dona
  9. That's wonderful news! I'm so happy for you!!
  10. Dona


    Hi Kathi THANK YOU for your response to my post. I am so so sorry about your husband's dx, but I'm amazed at how quickly they started the actual treatment after the EBUS! That's wonderful! I want to hear all about his progress as it will give me hope and also the information I'm hungry for about this rarer type of LC. I'm past the WHY ME on LC, now kinda in the WHY COULDN'T IT HAVE BEEN the more common and treatable NSCLC? My timeline so far July 5 - coughing up blood, shortness of breath July 13 - chest xray - 5.7cm mass found RLung July 15 - non contrast CT scan - 5.2x5.5cm mass confirmed RLung July 21 - CT biopsy scheduled at local community hospital - they cancelled due to low kidney EGFR on previous blood panel (levels since are back to my "normal".) July 21 - transferred my care from the community hospital to one of the top 50 cancer centers in the US, UC Davis Comprehensive Cancer Ctr, Sacramento. July 22 - met with pulmonologist who fast tracked me for EBUS. July 29- EBUS. 4.1x5.0cm .Tissue off for biomarker testing,but preliminary dx SCLC. In summary, I am shell shocked and yes more waiting til I can actually start fighting this crap, BUT PLEASE keep in touch and keep me/us posted on your husband's 'journey' and perhaps we can help each other through this. Dona
  11. Hi Daniel. How are u doing? Can u pls post an update? I'm just out of an EBUS bronchoscopy and preliminary dxd wit sclc. Hungry for any and all info on this wretched disease. Thx. Dona
  12. Hi Katie. I just had an EBUS bronchoscopy this morning and although biopsy results not yet in, my Dr said it looks like SCLC. If it is confirmed, I would be happy to participate in the study bc there just isnt enough info or hope out there yet. Let me know what my next steps are if you are still looking for participants. If the study is still open I can contact Monica in yr post. Thx Dona
  13. Emma I am so sorry about your dad. It sounds like he's a very proud and most likely scared man. Please know that there are survivors on this forum and even though in your mind it seems like doom and gloom, there have been massive advances in treatment in just the last few years. Pls stay away from Dr Google,he can be a nasty doctor As Judy mentioned, her mass was 6cm, I currently have a 5.4ish (3 scans, 3 different measurements, taking the middle nbr) mass that has not yet been officially diagnosed as cancer, but my Drs think it is. I go in Thursday for a bronchoscopy and ultrasound biopsy so my dx will be forthcoming. I'm holding on to hope, with credit going to this forum. I was in the dumps before I discovered the wonderful survivors on thus site. I'm sure once your dad realizes that there most likely will be treatment options for him, he will come around and embrace hope. You are playing such a large part in his current situation, and if you maintain a positive attitude it will rub off on him. Please keep us posted on his progress. Dona
  14. Gina I am so new to this forum and while perusing topics I stumbled on yours from earlier this month. Your story sounds like mine, especially the waiting for answers. Please know this.group is magic when it comes to extensive knowledge, suggestions and HOPE. Pls keep us posted on your journey.
  15. Carrie, pls provide an update on your diagnosis. I am new to.this forum and it's a gamechanger for my attitude and future hope. A 5.2cm mass was found on my rlung several days ago, and I am currently waiting to make contact with an oncologist for PET and possible MRI. Because u posted 2 months ago, Im anxious to hear how you're faring. Pls check in and let us know how you're doing!
  16. LexieCat, thx for the book recommendation. Downloaded it last nite.
  17. Lou thank u for welcoming me to.the 'family'. You are a godsend to me. I have read the 10 steps by Tom and it is informative and uplifting. I seem to be consuming everything I can about this disease so that I can be an informed self advocate for my medical team. I seem to be imagining the worst so that if it's anything other, I havent 'jinxed ' it. Anyone else bargain with fate like that? I am so thankful for all of u for holding me up through these next steps and subsequent treatment. Thank you thank you thank you!
  18. Judy, yes I am in the twilight zone and posts like yours are so helpful in keeping my sanity until the DX and treatment plan is developed. I really appreciate the information and support you and others are providing during this crappy time.
  19. Hi Brian, thx for yr reply. I was a smoker in high school then quit in my 20's. I'm 66 now. I have had an occasional cigar with my son-in-law in the last year or so. My mother smoked 2 packs a day and finally quit in her 50's. She passed in 2016 with COPD and liver cancer. So I've definitely been exposed. I did have uterine cancer in 1999 but was considered 'cured' by my gyno onco. Of course it's in the back of my mind that this mass could be metasized uterine cancer. I have been remiss in doing annual checkups bc I thot I.was cured. That will all change now lol. My radiologist's point of reference on this current mass is a 2016 xray which was clear so of coursr this mass is considered fast growing: 5.2cm in 5 years. It's always in my thoughts but this forum is such a welcomed resource. Thank u again for yr post!
  20. Judy thx for the excerpt, his encouraging words really struck home with me and brought tears to my eyes.
  21. Tom Thank u for your quick reply. Since my xray and subsequent CT scan - all in the last 4 days - my world has been turned upside down. Until I found this forum. I've actually gone from I'm gonna die to I'm gonna fight solely because of posts like yours. Thank you again !
  22. I had a similiar almost lackadaisical feedback/experience from the gynecological oncologist who first diagnosed me over 20 years ago. I fired him and transferred my care to a premier teaching hospital. If you feel your bf is not getting the full attention of his oncologist, find one that will provide the care you expect. Good luck to you and hugs for your bf.
  23. LexiCat I am also retired fed, and currently working part time to feed my chaos habit. U mentioned u had a 3nd career - did u go on SDI or SSDI during yr treatment? I may need to apply for some type of.disability (already collecting SS)
  24. Judy, what treatment did u have if not eligible for surgery? Was it bc of the mass location or the size? My mass is 5.2cm
  • Create New...