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  2. Hi everybody! I am a newbie on the forum although I have been a member of LUNGevity for several years and have attended the Hope Summits in Washington, DC. I am a 58 year-old female who was diagnosed with non-small cell stage IIIB in October 2014. I had a very large tumor in my upper right lobe pressing on my vena cava. Anyway, following radiation, chemotherapy, a lobectomy, oxygen therapy and rehabilitation, I had no evidence of disease for 4.5 years. My routine CT scan in April of this year showed a slight change in my left bronchus. A PET scan was ordered and that particular area is the only area that lit up. I had a bronchoscopy and biopsy which initially came back as negative from pathology. However, my slides were sent for further evaluation and that is where the small cell lung cancer was diagnosed. I am told it is at limited stage. This is in my "good" lung that had no no evidence of disease previously! Do any of you have experience with non-small cell followed by NED, then diagnosed with small cell years later? I realize attitude is extremely important and I have always been a very positive, upbeat type of girl, but this diagnosis almost hit me harder than my previous! I am currently being treated in chem with Cisplatin and Etopiside three days week every three weeks and radiation every day, Monday through Friday for seven weeks. Thank you in advance for any information any of you can provide!
  3. Today
  4. Tom, thank you so much for your response! Yes, I realize attitude is a BIG part of our journey. That is one of the things I had working in my favor at my initial diagnosis when the prognosis was not good considering the size and location of the tumor. I was so near that 5-year mark and was optimistically thinking, "We got this!" I am not sure, but I think this may be part of the reason I was so floored when I received the diagnosis. Initially the pathology report came back as negative for cancer, so I was really getting my hopes up. Everything was coming back in my favor. But, my slides were sent off for further evaluation and it was at Mayo that the SCLC was diagnosed. I am not a gloom and doom kind of girl, which is why I am kind of surprised at my feelings this time. Of course, this diagnosis is relatively new and I have only just begun my treatment program. I even still have my hair! I have always lived my live with hope and optimism and plan to get back to that point as I journey on! Perhaps, I have just hit a little bump in the road. Thank you for your time!
  5. I am so sorry your surgery wasn't as clean and helpful as you would hope. I wonder why I had chemo and radiation and you only had chemo. It doesn't sound like your options were outlined to you in the most positive way. Sending soft hugs and prayers.
  6. Diana, A small cell DX after surviving late stage non small cell, no I didn’t have that experience and thank the Lord! Unfortunately, because of your survival experience, you know the treatment drill. You also know the drama, devastation, and depression that accompany our malady. Thankfully, immunotherapy is moving the survival needle to the right for small cell. But, all that said, we are left with but two things we can influence in our disease: hope and attitude. I am so very sorry you have this burden and we’ll help as best we can, but the battle is yours to fight. I say, put on your battle rattle, lock and load, and move out to decisively engage your small cell enemy. Believing you can win is the key to victory. Stay the course. Tom
  7. Hi all! I was recently diagnosed with limited stage small cell lung cancer following a routine CT scan. I was diagnosed with non-small cell squamous cell 4.5 years ago. Following radiation, chemotherapy, surgery, and rehabilitation, I spent 4.5 years living a productive life with no evidence of disease. During this time, I lost my father to non-small cell squamous cell lung cancer on Father's Day two years ago. He was diagnosed exactly one year after I was and lived only a little over a year and a half following his diagnosis. Needless to say I was absolutely dumbfounded when, following a PET scan and bronchoscopy/biopsy, I was informed of my new diagnosis. I am a 58 year-old female and have attended LUNGevity Hope Summits tin 2016 and 2018 after my first diagnosis in October 2014. I am currently undergoing chemo and radiation for my new diagnosis. Folks, I am having a tough time with this one. When diagnosed with non-small cell, I was staged at IIIB and was not given much of a chance initially. Through the work of some amazing surgeons at Mayo and extensive rehabilitation, I was even able to get off of oxygen, get my life back and return to teaching full-time. I am so grateful and have always counted my blessings, but I honestly am now so heartbroken. Thankfully, this cancer was discovered early due to routine scans in my follow-up care. While I do realize it could be much, much worse, I can't help feeling just a little bit sorry for myself. Are there others with similar stories of being diagnosed with small cell years after diagnosed with non-small cell? I am reaching out for support, encouragement, and friendship. My new friends, I thank you!
  8. Hi Laurel it is a frustrating disease on all counts and when I was first diagnosed I was told I was curable just by surgery but when I had the biopsy done the dr had 2 goes at it and couldn't get it so another more senior dr did and I always feel that the plucking away at the nodule gave it a chance to leave cells behind and the time between biopsy and surgery (2 months for me ) so I had 7 lymph nodes with cancer in them and then I become stage 3 A and needed chemo to round up the cancer in the nodes which it did temporarily and then 3 lit up on a pet scan and I'm asked if I would like to extend my life and have immunotherepy...so I'm curable one minute to extend my life the next but I'm doing ok so far so I'm living in the moment ...
  9. Yesterday
  10. Thanks so much Lou! While general consensus seems that what has been found in the lungs is likely not what is causing my symptoms, i found it interesting that the chest pains I have correspond quite closely to what was described in CT. My appointment with pulmonologist seemed to indicate an obstruction in the upper airway, so I've been referred me to Otolaryngology for further review.
  11. I was stage 1....but 3 months later, after surgery removing top third of right lung, I was stage 3...mass was larger and 4 lymph nodes had cancer. After surgery, no evidence of disease, but with lymph nodes surgery was followed by chemo (carboplatin and alimpta). PET scan showed no evidence of disease....but still had radiation (28 days). PET scan followed....no evidence of disease. I've had another PET scan in January and one in June....no evidence of disease. Surgery at MD Anderson, Houston, chemo and radiation done locally. Find the best medical advice, keep your primary physician involved (especially for pneumonia) and fight aggressively.
  12. I found that my primary doctor dealt best with the pneumonia I had two times going through chemo and radiation. My oncologist and radiation doctor focused mostly on cancer.
  13. Bless you and your mom. Such good news!
  14. Wonderful! Stay the course. Tom
  15. Oh I meant to say, this virus thing is a mystery because in April I got a recombent exercise bike. I was doing rides during the day of 12 mins each. Then suddenly one day I got on the bike and couldn't even do 2mins. This is the first time I felt this virus thing. I waited a few days and got back on the bike and the same thing happened. I couldn't even reach 2mins. Then of course on May 20 I found myself in the ER with pneumonia and a newly discovered mass on my lung. This is why I think the virus is connected somehow to the mass.. I feel the virus today with a lot of weakness. Maybe it is related to the pneumonia. I remember my pulmonary doctor say that it takes a month or more to recover from pneumonia. At this point who knows?
  16. Blood pressure is always good thanks to a combo I found because of a great PCP who worked with me. Today is weird. Yesterday I thought that I might be headed towards another bout with pneumonia. Lungs and trachea were irritated. But this morning my lungs are better. The only thing I have to complain about Lol is that this thing that they say is growing in me is totally zapping my energy. This mass thing is all new to me. I am still waiting to meet up with my thoracic surgeon on the 19th to make plans for the biopsy. But I can see that if this thing wants to zap my energy I am going to have to roll up my sleeves and fight the thing to have any kind of life. I haven't even gotten any chemo yet. But I can see that energy loss is an enemy that I will be fighting
  17. Mally


    Yes it is Irwin ..a way to share treatments and issues with others going through or gone through the same problems to do with lung cancer and emotional support too ..
  18. Leo, her first two treatments were Carboplatin and Tecentriq then third treatment they added Etoposide. She’ll get all three again next week. Then after that she’ll remain on Tecentriq indefinitely. Her doctor started her on treatment very cautiously because of her age (90). She wanted to see if she could tolerate the Carbo & Tecentriq before adding the Etoposide. The addition of the Etoposide seemed to increase her fatigue and made her feel pretty awful which made her begin to question her decision to have treatment at all. But over the last week she began to feel better and when we got her pet scan results yesterday it renewed her determination to get through it.
  19. Hi brenda did your husband have a lung function test done ? Because I did and was told if I failed that I wouldnt be suitable for surgery but with my cancer being on the outside of my lung it was easy to get to and I had cancer in 7 out of 20 lymph nodes taken at the time of surgery and the reason chemo followed and now opdivo immunotherepy to keep the nodes under control ...which it is so I hope your husbands treatment works for him too ..
  20. What treatment is she receiving? Congratulations on the wonderful results!
  21. Thank you all for your words on your journeys and please keep us in your prayers. I will keep you all in mine. I don't know why my husband's cancer is inoperable. I know he has 5 lymph nodes that are malignant and a carcinoma in the upper st lung.
  22. My husband has 5 lymph nodes that are maglinant. They are going to do radiation on them. Three are on the same side as the carcinoma upper right lung and one in the subclavian area and one in neck I believe. GOD bless you.
  23. Awesome news Lou. Prayers on board. GOD bless.
  24. Is anyone familiar with CIMAvax? Developed in Cuba for NSCLC. Curious, because I am Cuban. Seems I heard something about this years ago on the news.
  25. Saw the Oncologist today for my moms bloodwork and results of yesterday’s pet scan. Pet scan shows main lung tumor has shrunk from 3.7 cm x 3.0 cm to 2.9 cm x 1.8 cm, complete resolution of right hilar lymphadenopathy and satellite lesions in right lower lobe have resolved anatomically & metabolically. Treatment is working! This is such good news. She has a renewed sense of optimism that will get her through her treatment next week and the side effects that follow. After that she’ll be on a maintenance dose of Tecentriq. We know it’s not a cure but it buys her more time, time she so desperately wanted. I don’t know what the future will bring but for today I will savor this victory against the beast.
  26. Last week
  27. Irwin1


    I have been using my phone to post but the browser is causing malfunctions so I may have to pull my laptop out of the closet. Thanks Tom. The knowledge that you poccess is really a blessing to me. Upon reading the first post of this thread at this point there is no reason to trust my oncologist yet. As I have said I worked in the path lab in a busy hospital in N. Miami and when it comes to actual samples from a living person I can catch a doctor making mistakes. But I know nothing about radiology and it appears that you do! I can tell you how my oncologist operates when handling what the patient knows. When he visited me the one time in the hospital we had yet to get the results from the needle biopsy. At this point he told me that at this point it could be anything such as a fungal infection. This had me thinking very positively and relieved me of my anxiety. What he didn't tell me was the odds that it could be a benign tumor or malignancy. So in a way I feel like he likes to relieve the patient walking a fine line of false hope. When the biopsy results came in he called me at home and said that the results were inconclusive and that I needed a PET scan. But then he started giving me reasons why I should be positive about the report. I hadn't read the report myself calling the needle biopsy myself which clearly said that it was not cancerous but was consistent with pneumonia. He then started to build me up by listing the common symptoms of LC and telling me that I didn't have any of them. He also told me that sometimes infections show up like masses on the CT scan. This is also true. So I became confused and asked him if he was giving me a good report. For some reason I don't remember his answer. I felt like he should give up oncology and work for President Trump's press secretary. Anyway thanks for the info. I have to go get the dust off of my laptop!
  28. Happy Birthday Susan! I’m glad you are keeping busy.
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