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  1. Like
    Curt reacted to Blossomsmom in My how things have changed   
    I am so thankful to have found this site and so appreciate everyone on it. Here’s why. On 1/14/91, my 63 year old father was diagnosed with Small cell lung cancer with brain mets after being hospitalized with what they thought was a heart problem. I was devastated. He lived only 5 months. Heartbroken and shell shocked don’t even begin to describe how I felt. And at that time, there was no online support, there were barely any in person support groups for adult children dealing with the horrors of what I had experienced. I truly thought I was going to lose my mind. It took me years to work through my grief. 
    Fast forward to 11/4/18. I took my 89 year old Mom to the ER for what I thought was severe dehydration from “the flu”. Things began to happen very rapidly once we arrived. Within about 30 minutes the  ER doctor told me that my Mom was either having or had just had a heart attack and as an added complication, her kidneys were shutting down. Ok, that explains all the activity in & out of her room I thought. While I was trying to process that, they did a chest X-ray which I thought was odd and then took her for a chest CT which again I thought was odd but at that point didn’t question. Shortly after that, the ER doctor gave me the news. My mom had a mass in her right lung & enlarged lymph nodes all of which they thought meant lung cancer. Wait, what? I thought I was going to throw up or pass out or both. I was thrown immediately back to 1991 and thought this can’t be happening again! But no time to process that, immediate concern was back to her heart & kidneys. Over the next week in the hospital slowly she began to recover.  Oncologist came in the last day she was in the hospital & explained the CT scan results again and the tests that would follow. But none of the tests could be done until she was recovered from the heart attack. Finally in January they biopsied her lymph nodes, came back inconclusive. We then waited & waited for the lung biopsy to be scheduled. It wasn’t until I called the surgeons office and told them if they didn’t get it scheduled in the next week that my Mom had decided she wasn’t going to have the biopsy at all and just get on with her life. She had the biopsy the following week.  From November through mid March I couldn’t help going back to 1991 and feeling terrified for what I thought was the death sentence my Mom was about to get. And of course Dr. Google didn’t help my preconceived notion of what was going to happen. We finally received the biopsy results on 3/28 and stage 4 small cell/non small cell lung cancer combo was diagnosed. I went into panic mode and thought back to when my mom took care of my dad over his last 5 months. How will I do all that, can I do what it takes, am I strong enough to do it, what will she go through, what about her quality of life and on and on for weeks. Then I just happened across a website called Lungevity.org and began to read the forums. I couldn’t believe what I was reading, people posting that they are LIVING with lung cancer, people posting HOPE, people posting ENCOURAGEMENT! I felt like I’d hit the lottery! Having gone down this road once before with nothing available, I feel incredibly lucky to have a place where people are sharing their first hand, boots on the ground real life experiences with everything related to lung cancer.  This site is helping me dig my way out of the very deep black hole and is giving me the strength to get through whatever we face for which I will always be grateful for. 
  2. Like
    Curt reacted to Rower Michelle in Can't seem to shake anxiety   
    Hello Marianne,
    Nice to heat from you again. I’m glad that your physical recovery is going well.  Welcome to our club where it’s perfectly normal to feel like you are going crazy. 
    Your doctors may not have shared that there is no correlation between tumor size and stage.  Big tumors can stay put while little sneaky ones get away. One of my friends had advanced testicular cancer over 30 years ago, to this day the cancer recurrence hovers in the back of his mind. It isn’t a huge focus but more like having a  “roommate”   They learned over time to coexist  
    You might call the oncology social worker to ask for a referral to a support group as well. Living amongst other survivors can be very inspiring.  If you’re not sleeping or eating well, I wouldn’t hesitate to ask the doc for some meds.  It might take some time to get your “sea legs” as you settle into the new scan schedule. 
    This isn’t a walk in the park- until you head back to work you might want to calendar in some nice self care activities like yoga and  myofacial release Message, yoga or a weekend getaway.  All of these things have empirical evidence to effectively manage the anxiety. 
    Hugs to you! 
  3. Like
    Curt reacted to Deb W in Can't seem to shake anxiety   
    Hi Marianne,
    I understand.  I will be having my 1st post op scan in October.  I would say that the worry of recurrence is there, or at least in the back of my mind daily. 
    If you are able, exercise is helpful for low mood and anxiety.  Good nutrition is key as well.  However, If you are experiencing loss of sleep, poor appetite and low mood for more than a couple of weeks, it might be beneficial to have a medication evaluation.  Medication can be a wonderful support as you go through this process.   

  4. Like
    Curt reacted to Tom Galli in Can't seem to shake anxiety   
    Welcome here. I understand your recurrence concern; I've had four!
    You also are consulting with a therapist and that is the right thing to do.  I didn't and ended up deeply depressed, and afraid, and in pain, and etcetera. 
    Maybe this prospective might help.  You've had a close encounter with a deadly disease and to defeat it, you chose treatment.  In choosing treatment one chooses life and doing so means a desire, perhaps a duty, to enjoy the life you have. This was so hard for me to realize because I was looking for "big picture joy". Big picture joy is a myth. Most of life is not joyful but there are moments. I was so confused I was missing the moments. Now I look for those small opportunities for joy everyday and when discovered, I revel in the moment. I search, discover and celebrate not everyday but most days.
    A very close friend, a fellow lung cancer survivor,  passed last August. I wrote this about her and her life attitude.
    Stay the course.
  5. Like
    Curt got a reaction from Roz in Post Surgery and Updates   
    Hi Deb.  I had a RUL at the end of February.  The fatigue was surprising but it is passing slowly.  Your body needs a lot of energy to recover.  Even if you are outwardly recovered your body may still be working on some inward recovery.  Keeping up your activity level will help.  You’ve been through a traumatic physical and emotional event.  Both sides of that need to be nurtured for true recover.  Emotional stress and worry can cause fatigue.  We all worry about recurrence and progression.  Tomorrow isn’t guaranteed for anyone, even those without cancer.  Worry won’t change that, it will only get in the way of enjoying today.  I know, easier said then done.  I’m still working on practicing what I preach. I have found that as time is passing my physical stamina is recovering and my emotional worry is lessening.  I hope the same for you.  
  6. Like
    Curt reacted to Rower Michelle in Just diagnosed   
    Yes. I do. Given your wife’s presentation I was betting she had a mutation (like me).  I think the best shot mutants have is through targeted therapy.  Recent trials have resulted in excelerated FDA approval.  
    Going the chemoimmuno route could exclude your wife from participating in future clinical trials. Ask the doctor about that. 
    Targeted therapy is much better tolerated, works very quickly with a high quality of life. Chemo can always be a back up plan. 
    Ask about the potential side effects & to review the preliminary trial data before you make the final decision. 
  7. Like
    Curt got a reaction from Rower Michelle in Post Surgery and Updates   
    Hi Deb.  I had a RUL at the end of February.  The fatigue was surprising but it is passing slowly.  Your body needs a lot of energy to recover.  Even if you are outwardly recovered your body may still be working on some inward recovery.  Keeping up your activity level will help.  You’ve been through a traumatic physical and emotional event.  Both sides of that need to be nurtured for true recover.  Emotional stress and worry can cause fatigue.  We all worry about recurrence and progression.  Tomorrow isn’t guaranteed for anyone, even those without cancer.  Worry won’t change that, it will only get in the way of enjoying today.  I know, easier said then done.  I’m still working on practicing what I preach. I have found that as time is passing my physical stamina is recovering and my emotional worry is lessening.  I hope the same for you.  
  8. Like
    Curt got a reaction from LexieCat in AWOL, but back with good news   
    Congrats Lexi.  Great results!
  9. Like
    Curt reacted to LexieCat in AWOL, but back with good news   
    First things first--oncologist appt. after latest scan this morning.  All clear!  Originally the thought was that now, after two years post-surgery and cancer-free, the scans would drop back to yearly.  Onc tells me, though, that guidance has changed and now some recommend one more year of 6-month scans.  He prefers to take the conservative approach, so it will be six months for another year.  BUT he tells me this 2-year milestone is HUGE and he doesn't expect any further issues.  He also said there was a chance insurance would insist a 6-month scan not necessary at this point, and he wasn't particularly concerned about that--in that case, he said, a scan in a year seemed fine to him.
    Sorry I haven't been around for the past several weeks.  Very busy both with work and with my latest obsession with the political process (which I won't get into here, other than to say there's a certain young Mayor from South Bend who is AWESOME).  I'll try to stop by as I am able to, but overall I'm happy to develop some new interests.  I barely thought about cancer until this morning--again, my lovely doc told me "Everything looks GREAT" before the door closed behind him.   
    Hope folks here are doing well--I'll try to catch up on the latest.
  10. Like
    Curt reacted to Susan Cornett in CT results and exhale   
    Had a CT on Tuesday and I'm thrilled to say I'm still NED!  This is the longest stretch (8 months) that I've gone without a recurrence or treatment. Somebody pinch me! I'm also 3 years & 4 months from diagnosis as stage IV. So very much to celebrate!
    As I said in my FB post last night, it is not lost on me that I've been blessed with more time than others. I believe we all have a purpose in life and I believe I"m still here for a reason.  I try to use my time to share our stories, educate others and help the newly diagnosed deal with this crummy diagnosis.
    Tom says stay the course - he's absolutely right! 
  11. Like
    Curt reacted to Isabelle49 in Med port   
    Right. I will care and advocate for myself the same as I did for patients I cared for in my career as a nurse for 33 years.
  12. Like
    Curt reacted to Irwin1 in I have to share this good news!   
    I got some more hope today. Last Friday I took a fresh CT scan. I had my first CT scan in the ER on May 20 when they discovered the mass. Then I had my PET scan after I was discharged. Then this later the one on Friday. In the ER the mass was between 5-6 cm. I had a needle biopsy that said that the pathologist did not see any cancer. Just cells and dead tissue. Then in the PET scan my wife noticed that the mass shrank to 4 cm. She asked the oncologist about this but he said that the shrinking was because of the PET scan was not as accurate as the CT scan. 
    ...I was feeling very healthy today and I still did not have even one of the symptoms of LC even with the 5cm mass in my lung with a PET scan with positive lymphnodes.So I called into the thoracic surgeons office to see if they would read the results to me..The girl who answered the phone that she had to get someone in the technical department to read the results. So I have no idea what the qualifications of the girl that read the report to me. I don't remember what the report called the mass but the report said that there was shrinkage in this CT scan too. The girl told me that it was very rare that something cancerous to shrink by itself.. But I am sure that the girl had to know that she would get into a lot of trouble saying this. She told me that I would still recommend taking the bronchoscopy.
       So I am taking what she told me with cautious optimism. If I get over exited about this I could get emotionally body slam if I get a terrible report from the bronchoscopy.
         But I do have some real hope the way things are going. The positive PET scan lymphnodes could be reactive from infection along with the mass. For those who pray keep praying 🙏
  13. Like
    Curt got a reaction from Deb W in I have to share this good news!   
    Hi Irwin.  I can relate to the smack in the face from the realization you have cancer.  I’m currently NED and my mind often drifts away from my having had cancer.  But sometimes I get a sense of dread when my mind suddenly remembers and panics.  It’s not often but when it happens it’s definitely like a smack in the face. 
  14. Like
    Curt got a reaction from Roz in Just diagnosed   
    I’m sorry to hear about your wife’s diagnosis SandyK.  You’ve gotten some great guidance and advice from Michelle and Tom.  Ignore the numbers on the internet (they are dated), educate yourself and definitely get good genetic testing done.  Not all panels are created equal.  Targeted therapies for specific types of lung cancer can be more affective.  Sometimes this disease requires one hour at a time.  Your wife is lucky to have such a great support system.  Hang in there.  
  15. Like
    Curt got a reaction from Roz in Just diagnosed   
    I was diagnosed a few months ago.  I went through a year of scans following a lung nodule that was discovered by accident when I got an abdominal scan for something else.  I was lucky to be able to have surgery as a treatment and haven’t required any follow up treatment.  Just semi annual scans.  I have the unfortunate experience of having had family members with lung cancer diagnosis.  Five of my fathers nine siblings have been diagnosed, my father included.  That was a while back and the treatments available today were not available to him.  I’m glad they exist now but it hurts to know that just a few years could have made such a big difference on his prognosis.  Stage IV lung cancer is still a tough disease to fight but it’s not as insurmountable as it was when he was diagnosed.  
  16. Thanks
    Curt got a reaction from stewartb40 in Introduction   
    Hi Becky.  I’m really sorry to hear about your husband.  I went through much the same with my dad and it is very upsetting.  It was the hardest time of my life.  The hallucinations could be caused by his medications or they could be due to disease progression.  
    My dad hallucinated quite a bit and would get pretty agitated with my step mother.  She was the one feeding him, giving him his medication and doing a lot of the primary care. He was convinced she was trying to poison him and tried to throw her out a window more than once. I had to intervene to stop him.  My brother and I went to visit them, saw the situation and decided we had to stay.  My dad was very different with us.  He always recognized us and we would be able to calm him down, though he still hallucinated with us.  He would ask us where our mom was, they had been divorced for 30 years.  He would ask about his sisters who had passed.  It was all very upsetting.  We struggled a lot with whether keeping him home was the right choice.  It was really scary.  I don’t think it would have been possible without the three of us there.  We never really got much of an answer as to why he hallucinated, disease progression was the best we were told.  The hospice nurse had us increase his medication so that he was basically always sedated.  I believe it was morphine.  He continued to insist on getting up to use the bathroom.  Other than that he slept a lot after the meds were increased.  He started to eat less and less.  I had conversations with my dad early on about how he wanted to be treated when he couldn’t decide for himself anymore.  I asked him if he preferred to be lucid or not in any pain.  He said he preferred to not be in pain.  It was hard because we wanted him to be present with us both mentally and physically as long as possible.  We had to honor his wishes and make sure he wasn’t in any discomfort, which meant he was not with us mentally much at all.  In the end it was the right choice for all of us, one of many right choices my dad made for us over the years.  
    Let your doctors know what’s going on   You can request a hospice service come to your house.  They came twice a week for an hour for my dad and we’re able to provide some clarity with what was happening.
  17. Like
    Curt reacted to Isabelle49 in Brain MRI   
    God is Great!!! Brain is clean (of course, this is relatively speaking). Major hurdle, so good to hear. Thanks for your prayers. Blessings to all.
  18. Like
    Curt reacted to Tom Galli in CT or PET/CT?   
    That is a tough question. A PET is useful for staging cancer or determining distant metastasis locations. Today, it is common to have a CT scan in combination with the PET but I'm told the CT portion of the scan is not of diagnostic quality. Its purpose is to locate metastatic areas but it doesn't show shape, size or characteristics.
    For lung tumors, my oncologist prefers a CT scan administered with contrast. The contrast media allows the radiologist to discern differences between the tumor and lung tissue that is helpful in sizing and characterizing.
    So I think the answer is which test depends on the situation.  A PET scan is very helpful in staging but a CT scan is useful in tracking and characterizing.
    Stay the course.
  19. Like
    Curt reacted to BridgetO in Hiccups   
    Hi Debby. 
    I use an acupressure point to stop hiccups and have found it more effective than others I've tried.  It's also supposed to help with nausea and vomiting but I can't vouch for that. I didn't know about it when I had chemo years ago for a prior non-lung cancer. Here's a video from Sloan Kettering that shows the point. Let me know if it works for him
  20. Like
    Curt got a reaction from Rower Michelle in No Inherited Mutations?   
    @Rower Michelle I’m def continuing to pursue it.  @Tom Galli thank you for one recommendation.  I will check it out.      
  21. Like
    Curt reacted to Diana in Non-small Cell - 4.5 years later small cell - anybody?   
    I had a really good day yesterday and am feeling pretty good today as well.  I got a lot done yesterday as I felt more energetic than I have for about a month or so.  Tomorrow is all day chemo again followed by half days both Tuesday and Wednesday.  Last round three weeks ago really hit me hard.  I was severely dehydrated and had to get IV fluids, my white cell and platelet counts were down so they had to stop radiation until they came up, I had extreme nausea and I was pretty sluggish overall.  I am hoping this round goes better.  I am drinking lots and lots of water today and will do so for the next few days.  I sure don't want to get dehydrated again.  I could hardly move!  I am getting a CT scan Tuesday to see if the radiation and chemo have shrunk my tumor any so that they can narrow their field for radiation. 
    Thank you all for your responses, positive thoughts and prayers.  I keep all of you in my prayers as well.
  22. Like
    Curt reacted to Irwin1 in Good bye MacDonald's and Subway!   
    Well today is the first day I have been a vegetarian.  My main plate was black beans to get my protein. I had a side of broccoli that was awesome. I don't plan on going without any kind of meat every day. But I plan on having a bit of meat on the plate. My wife got me some frozen salmon steaks. I have also been living on white solid tuna. I don't know how much good the diet will do but at least I am doing something. 
  23. Like
    Curt reacted to Barb1260 in Treatment plans and costs   
    From what I understand, treatment plans are protocol based depending on the stage and other details of your case. The copayment you have depends on your insurance but if you can’t afford it there are usually ways to get financial help. Look into a social worker through your oncologist office, there is usually one to navigate any issues. The 2 in my docs office said just last week there is a way to find assistance for everything and they have been miracle workers. It all seems daunting at first but it always works out. 
  24. Like
    Curt reacted to Tom Galli in Introduction   
    Welcome here. We are a federation of lung cancer survivors or caregivers who love and tend those with lung cancer. Seems likely you've joined the latter.  Susan's given you very good information. Most important in her journey, and for many others in this forum, she was diagnosed stage 4 from the outset and is thriving. I was diagnosed stage 3B, had a year's worth of thoracic surgery removing my right lung and plugging leaks, and had 3 recurrences after surgery to my remaining left lung. After more than 15-years, I'm still here.
    Almost everyone diagnosed or loving someone diagnosed looks up survival statistics on the internet (we irreverently call this consulting Dr. Google) and the conclusion is frightening.  The fright results from two factors: lung cancer is a deadly disease, and lung cancer statistics are not very accurate. This explains the accuracy problem. Fortunately, in the last 5 years, many new treatment methods have been introduced to our community and increases in survival are not reflected in the statistics because they are a 5-year moving average. 
    Among these non-surgical methods are targeted therapy and immunotherapy (I've linked further information). The biopsy and follow-on lab test of the effusion fluid will give your dad's doctors information to determine suitability for these new methods. Moreover, advances in radiation oncology (IMRT, IGRT, SBRT and Proton Therapy) are a whole other approach to treatment, either alone or in combination with chemotherapy. So, there are means and methods even with your dad's complicated medical history.
    So what is ahead? Unfortunately, waiting in the diagnostic phase of this disease is the most difficult to endure. Once the histological (under microscope) pathology determination is made, you'll know two things: is it cancer and if so, what is the type. Knowing the type of lung cancer is critical to designing a treatment plan. While histology yields a type, a further lab test will determine suitability for targeted therapy and or immunotherapy. This further lab report could take a number of weeks. And for most of us, the waiting is unnerving.
    We used our waiting time to learn about my disease. This investment proved essential to my treatment outcome for it armed my wife (my caregiver) with relevant information to ask a "terribly preceptive question" about a potential treatment method that saved my life.  Here is a summary of lessons learned from my diagnosis and treatment that may be helpful to you and your dad.
    You'll have many questions and this is a good place to tee-them-up.
    Stay the course.
  25. Like
    Curt reacted to Susan Cornett in Introduction   
    Hi, Aub. Your dad has certainly had his challenges - he's tough! When do you anticipate results? Do you know if the docs are testing for genetic mutations? Both of these drive treatment options. I am a stage iv survivor - almost 3.5 years. Because of the advances in treatment, lung cancer just isn't the death sentence it once was. Depending on the site, surgery may not be an option. I read a statistic that only 17% of diagnosed lung cancer is treated with surgery so the doctor's statement follows that number. Since my diagnosis, I've had two recurrences and both were inoperable due to location. Fortunately other treatment options were available.
    We are here so ask us anything. Someone in this community has walked in your dad's shoes and can help you understand the process. We know the waiting part stinks - it feels like it takes so long to get the process moving. 
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