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  3. Welcome here. I wish I could offer an answer for predicting life span with lung cancer. Although I certainly worried enough about it to be a professional predictor, my prediction experience hasn't been very good. I went from death's door at age 53 to celebrating my 69th birthday tomorrow. The survival statistics your doctor may be citing are based on a 5-year history and small cell treatment breakthroughs have just started to occur within the last year. Read Leo's experience with small cell lung cancer here! My fretting over lifespan during my 3 years of treatment resulted in two things I hope you avoid: severe depression and foregoing the opportunity to experience the joy of live during my treatment and between treatments. I don't know the details of your clinical trial but table below shows some of the immunotherapy drugs currently being studied. Keytruda is a FDA approved small cell treatment drug that has demonstrated tumor killing power and is good stuff. So if you are in an immunotherapy trial, I think you are in a good treatment space. This could be a lottery where you win either way! Stay the course. Tom
  4. very well put and yes it does. the best way I can describe it is, like riding a rollercoaster up and down.
  5. tipay

    clinical trials

    I finished chemo and radiation dec. 2018.my follow up scan was the end of may, it came back bad to begin with tumor was in right lung and at a stage 3.After scan numerous nodules in both lungs and matesatized to neck.oncoligist informed me it was at a stage 4 and incureable.dr.ordered a biopsie on neck and reffered me to Vanderbilt ingram cancer center where they said I would be a good canidate for a clinical trial,waited on biopsie report it came back as not enough tissue,so another biopsie this time in my lung.it was also sent to pharmaceutical company it has come back so now scheduled for ct scan,brain scan,and numerous other tests.the way this trial works is like a lottery I will either get keytruda which I want to know if anyone is takeing this and how long have you been on it since stage 4 and what kind of relief did you get and side effects.the other drug is exsperimental I asked Dr what he is seeing with this faster shrinking of cells and tumors but could not say about a longer life span.And this is my next question I asked him how long I would have without treatment 1 yr or less and with treatment 2 yrs give or take and I asked how do you come up with a start date he said from my 1st biopsie after follow up ct scan well how can they say that when I haven't been treated since dec.i know it depends on individual.but if anybody wants to shed some light my way t.y ive been doing some research but everything I see isn't good.trying so hard to be positive but during all this wife showed her true colors so now she is ex it is an emotional rollercoaster but I still find reasons to smile and three of them being my children. thanks for listening and any input will be appreciated god bless in yor battle.
  6. BridgetO

    VATs update

    Good advice from Tom and Curt! I found a 12 inch high foam wedge to be really helpful for comfort in sleeping. Rest a lot, but keep moving, too. Short walks will help you get your lungs back in order. Do you have prescription pain meds? If not, maybe you need some for a few days. Transition to ibuprofen/tylenol, if you can take them, ASAP. My doctor reommended alternating doses of the two. Hang in there, it gets easier.. You'll probably get pathology results at your post-op appointment. Bridget O
  7. Curt

    VATs update

    Hi Steph. Monday is REALLY soon to be sweating the spirometer results. It took me months to get back to where I was pre-surgery. The important thing is I did. Don’t rush it. Give your body a chance to heal. The pain does go away but it takes a while. It took me about a month to really get back in the swing of things. Walk as much as you can, use the spirometer as much as you can and SLEEP the rest of the time. You’ll get back sooner than you think.
  8. Yesterday
  9. Tom Galli

    VATs update

    Steph, I completely understand your frustration. I had a complete pneumonectomy (right lung removed) and pain, sleeping after discharge, and spirometer exercise all resulted in frustration. And anxiousness, well I had that malady in spades waiting for biopsies, scan results and post-op reports. I wrote this a while back to explain how I dealt with sleep after my surgeries. A recliner may be the best option for a while. Sleeping elevated moves the weight of the chest (and healing incisions) to the hips and therefore lessons the pain. If sleep continues to be a problem, consider a high density foam mattress and an electrically adjustable bed. Mattress stores sell wedge pillows that can substitute for a high density foam mattress and adjustable bed. Go to the store and try out the pillow to ensure you get the right angle of elevation. The mattress and adjustable bed changed my post surgical life, although I still struggle to get a good night's sleep. Do continue to use the spirometer and get out of bed frequently and walk around. These actions will speed your recovery. And, avoid school-aged children; the last thing you need is a chest cold to complicate the problems you are already dealing with. Welcome here. More questions, fire away. Stay the course. Tom
  10. Kelly, Use of the word "curable" as an outcome for any form of lung cancer is hard to fathom. About 10 years ago, my oncologist introduced me to the term no evidence of disease (NED) and said that was the outcome the oncology community was aiming for. From your post, I glean your mom is diagnosed with extensive-stage small cell lung cancer with a primary in the lung and two mets. Any stage of small cell lung cancer is difficult to manage or treat. Often small cell responds positively to chemotherapy but quickly develops resistance to drugs and spreads rapidly. I've read about clinical trials of combining conventional chemotherapy with immunotherapy and these are showing promising results. While she completes here current therapy, you might want to investigate your mother's eligibility for an immunotherapy clinical trail. Here is a resource you might use. I'd also ask her treatment team about trial eligibility. Here is a member's experience of treating small cell with combination chemotherapy (Carboplatin & Etoposide, and the immunotherapy drug Tecentriq) after a recurrence after successful first-line treatment. And, note the emerging immunotherapy treatment options after recurrence for small cell lung cancer here. Note the FDA has approved three immunotherapy drugs for treatment of extensive-stage small cell lung cancer (read Treatment Options for small cell lung cancer and scroll all the way down to see the Immunotherapy section). So, while I wouldn't use the word curable, I would use the words no evidence of disease. Immunotherapy is having a huge impact on both non small cell and small cell cancer treatment. So there may be two paths forward for your mom, even with extensive stage: a clinical trial or second line treatment with immunotherapy. There might even be a third to combine with the aforementioned: stereotactic radiation (SBRT) of the spine and bladder mets. Welcome here. Stay the course. Tom
  11. Steph1235

    VATs update

    Hi everyone, I had my VATs surgery on Monday and the wedge resection turned into a full lobectomy to remove my lower right lobe as the nodule was cancer. They also removed several lymph nodes and I will know more about them once I get the pathology report. I was out of surgery late Monday evening as the surgery took longer than expected and sent home Wed afternoon. I was feeling better but I think the locals are wearing off because I’m starting to feel more pain in my chest and on my sides. Does the crushing chest pain at night get better? I can’t sleep in bed only in recliner right now. I’m also only getting my spirometer to about 1000 and feeling frustrated. I’m also anxious since I wasn’t given any other info than it was cancer. I’m feel defeated today.
  12. Mally

    Port?

    I'm so glad you got the port and that your happy with it ...
  13. My mom was diagnosed with small cell lung cancer after several months of mystery symptoms (weight loss, headaches, hallucinations). She has a tumor on her lung that is inoperable due to its proximity to the heart and possible mets on her spine and bladder (a small spot on each). The doctor initially thought it was non-small cell but after biopsy confirmed that it is small cell lung cancer. In general, I'm just very confused about what the prognosis is. The oncologist that did the biopsy and the nurse that administered the first chemo said that it was curable. Yes, curable. Exactly what they said. Not manageable or treatable. My mom's own oncologist (different from the one that did the biopsy) is also very optimistic. But on the prescriptions (written by her oncologist), stage is listed as IV and small cell. And I know that small cell is staged as limited and extensive, which is why this is all the more confusing. I'm concerned that a doctor would use the word curable when talking about such an aggressive cancer. Someone help?!
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  16. Not to be morbid in the least or self-indulgent in the most (last week's column, "Something or Nothing" not withstanding), but recently I've had cause to hear about the future and be more concerned about the present. I have a homeowner problem that, like all such problems, is way beyond my limited skills: a crack in the concrete slab which "porches" our house, apparently caused by a very large and old tree growing way too close to this slab. This is not a water-leaking-into-the-house problem. This is a structural-type problem identified by a home appraiser whom I've paid for - but not bought - to process a mortgage refinance. Given the two-week time-frame during which I was expecting to schedule this assessment - considering the time-sensitivity of these applications, I was flabbergasted to learn that my expectations were totally unreasonable. Two weeks! I might as well have been asking for two months, which is what I ended up getting. After hearing the nearly identical appointment-unavailability story multiple times, and getting increasingly frustrated and impatient at the unlikely timely resolution of my problem in my lifetime (no joke), I finally heard from a company that was able to schedule an appointment which they did so with an apparent straight face (as much as I could glean over the phone): "I can have someone to your house on October 25." I snickered. "October 25! That's two months," I said. ("I could be dead by then," I said to myself.) To the woman I said, "No. I need someone sooner, in the next week or so. Good-bye." (I made this call on August 21st.) When I hung up the phone, I started laughing at what I didn't say and why I hadn't said it. Being that I have stage IV lung cancer, I am not exactly on firm footing. I didn't say to the woman that I could be dead by then because those words were figuratively speaking a bit to close to my literal reality. It was a case of fiction being a bit too close to fact and my mouth actually being able to cash that check. In addition to providing fodder for this column, my calls to miscellaneous home improvement/concrete/foundation repair companies left me not high, still dry, but totally unrequited. I needed help. I put myself out there and received practically nothing in return. It is a lesson I'll take to the grave. I don't want to sound unreasonable because I still think I'm of sound mind (not so much sound body), but being diagnosed with cancer does, at least in my experience, move up your timeline, so to speak. There's a certain amount of patience and accommodation that is totally ripped from your subconscious. When your life is in jeopardy, dealing with the daily double life and death becomes extraordinarily difficult, regardless of whether your answers are in the form of questions. The uncertainty of it all is very off-putting. Sometimes, you don't know whether your coming or going. Trying to live a "normal" life under these kinds of constraints - and restraints, can make Jack a very dull boy. And very often this dullness manifests itself in one's inflexibility. When your life is at stake, it's nearly impossible to act as if it isn't. Your brain seemingly gets rewired and re-purposed. As much as you attempt to retain your old and familiar self, this newer cancer-affected version slowly takes over. You're not exactly in "The Twilight Zone," but "imagine if you will" at age 54 and a half, expecting to live into your mid-80's as your both your parents did, instead being told that you have "13 months to two years" to live? Though I've taken it mostly in stride and lived way beyond my oncologist's expectations, to say one's stride is not changed by the experience is to give naiveté a whole new meaning. (Not to mention the fact that the neuropathy in both my feet makes walking extremely difficult.) Nevertheless, life goes on. As such, as much as I want to plan for the future, sometimes, it's the present for which I need to plan.
  17. Lin wilki

    Port?

    I am only 6 weeks into my immunotherapy trial. Infusion every 2 weeks. Nurses having trouble finding a good vein. Should I get a port? Doc said before I started I didn’t need one but I’m looking at the long view. Anyone else make the decision to get a port?
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