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Irwin1

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  1. Sad
    Irwin1 got a reaction from Brenda F in Good bye MacDonald's and Subway!   
    Started my Anti Cancer diet yesterday. I had to say goodbye to most of the food and drinks that were in my former life. 
       No longer can I have sugar or any processed foods anymore. And that covers 99% of the foods I ate in my former life..My main food yesterday was fresh cooked pinto beans with a small.piece of salmon to go along with it. My snacks were Pinto beans with a tiny dash of sucrose and hot sauce. Mainly my eating was limited yesterday because my wife who is fantastic is going shopping to get I everything I need to have a variety of food to eat and stay on my diet. 
       Diet soda which was a great luxury of mine for years is gone. I pretty much will be drinking plain water and sparkling water with a touch of flavor. 
      You can also count as my diet all the suppliments I take most of which are in pill form. There actually are so many pills and powders that if gravy were allowed on my diet I could put them on a dish and have them with the gravy.
      But the diet is one of the few things I have that puts me in control of my disease. 
       So good bye former life. My new life is here
     
  2. Like
    Irwin1 got a reaction from hope16 in I have to share this good news!   
    I just went to Moffitt's website and they take my insurance. However I am in Central Florida on the east coast. They are directly across the state on the west coast ( just a bit south) 
         I am going to call them tomorrow and see how they treat patients that are within about 150 miles from them. There has to be a way that they can solve the problem. 
       Please pray 🙏 for me when I make the call tomorrow. 
             Thanks much,
                       Irwin
    Furthermore I am starting my.Anti.Cancer Living diet tomorrow. It is radically different from how I was eating my whole life. But eating this diet gives me the feeling that I have some control over my situation. 
          Furthermore , I don't want to violate any forum rules by saying this specific faith I have) I am going to spend time meditating on the OT and NT Bible. I am sure that faith and meditation release healthy chemicals into my system. And during the day I am going to be picturing beautiful tropical waterfalls and similar places all day. I feel so excited about this!!
  3. Like
    Irwin1 got a reaction from Terri L in Update ....   
    I think I'll chime in. I guess not everyone has the same faith as me but I can share this letter from Paul the apostle. God sometimes allowed him to do great miracles and sometimes not. But I will say this. Paul was in prison and was suffering in there. When he wrote one of his letters to a church he established he directly attributed the prayers from his church that was giving him the stregnth to make it through.
        And the same with us. If we meditate on the prayers that are said in our behalf we can receive the same help that Paul got when he was in his hardships!!!
  4. Thanks
    Irwin1 reacted to Curt 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. 
  5. Like
    Irwin1 got a reaction from PaulaC in I have to share this good news!   
    Yes. I am finding people supporting me coming out of the woodwork. And this helps. Got to take every positive thing and count it as a blessing..
       I am a brand new rookie to this disease. I am learning more and more every day. 
      One thing that I am working on is waking. I wake up after a beautiful nights sleep. Then maybe 15 seconds after I wake up , boom! Lung Cancer. It hits me in the face. I'm not sure if that will ever go away. I mean I am learning to handle it after I wake up. It's just those first few seconds of waking up and reality hits. 
     Today I see my psychiatrist of many years because of my anxiety disorder.. I might get some valuable information from him because he was a surgeon before switching to psychiatry. 
      I don't seem to have any symptoms today that are significant so I will relish that because it looks like I am going to have chemo in my future. I am a student in living the life defeating LC. 
    Oh Bridget. May God bless you with a wonderful day. Or if you are in chemo.and pain may he give you strength to have a victorious day! Thanks for your reply. I count every reply a blessing 😇
  6. Thanks
    Irwin1 reacted to BridgetO in I have to share this good news!   
    Some use the Bible and some don't, and those that do interpret it a lot of different ways. But we're all in this together!  I'll take any kind of prayer, kind loving thoughts, lighting of candles, laying on of hands, whatever spiritual practice you want so send my way, whether or not it's the "brand" of prayer I  practice. I think it all can help. 
  7. Thanks
    Irwin1 reacted to Rower Michelle in I have to share this good news!   
    Well there ya go!  Moffit is a National Cancer Institute. You might want to ask them how they collaborate with local oncologists. For example, Here in KS there is only one NCI around for hundreds of miles, Kansas University. KU often does the initial assessment and treatment plan recommendation for a local team to follow.  The collaboration can work quite well. 
    The Anti Cancer Living has lots of great advice to put you in the drivers seat of your treatment. While you converting your diet, you might want to invest in a NutraBullet/Magic Bullet.  Easy way to get more veggies in the day. 
    Faith works!  We’ve got a giant prayer group around the world here.  What an awesome bunch of prayer warriors we can call on! 
    Some of us listen to Bellaruth Naperstack CDs she’s quite good in “Fighting Cancer”. 
    Theres a free phone app called Insight Timer that’s pretty decent too. 
    You will be ready for the appointment on the 19th!  Lock & load. 
  8. Like
    Irwin1 got a reaction from Rower Michelle in Is it just me?   
    Wow. Have you considered becoming a hostage negotiator for the police. You never miss on giving a shot of encouragement.
       Well the pulmonary doctor said that it would take at least more than a month to recover from the pneumonia although he didn't say anything about low grade fevers. I didn't have a super heavy case of pneumonia. I was admitted for the mass they found. 
       I did mention the low grade fever to the oncologist on the one office visit because I had one in the office. I mentioned that it might be from the pneumonia. He said that it could also be caused by a tumor. So he is aware of the on and off fevers.
       But tomorrow I am going to call my pulmonary doctor and let him know what's going on. Maybe he can do something. Plus I haven't been too active for the past two months because my wife had a relative staying with us. So for the first time I had to take out a kitchen garbage bag outside to the main garbage and I ended up losing my breath doing it. I didn't realize that I had developed shortness of breath so quickly because of my lack of activities. I also have trouble walking off and on with weak legs at times because of DDD in my lower back. 
       Anyway you and Tom are so great at giving advice. It seems like it's always been there did that for everything in the world of LC! 
     
     
     
     
     
     
     
     
     
     
     
  9. Thanks
    Irwin1 reacted to Rower Michelle in Is it just me?   
    Hi Irwin
    If you take a look around the forum, you’ll see we all can’t stand the waiting part of the diagnosis and monitoring process.  It stinks.  It’s not unusual for the initial diagnostic and testing to take 6-8 weeks.  The outpatient medical community unfortunately doesn’t move with the same sense of urgency we think they should when looking at a cancer diagnosis.  
    If you are having fevers, call the oncologist’s after hour service and let them know.  While it can take a while to recover from pneumonia, fevers aren’t typical.  
    Make sure you are getting plenty of water (at least 64oz per day). Let the doc know about your fatigue too- that could be anything.  
    I understand how frustrating all of this is however at the end of the day all this waiting does pay off. The better the diagnostic process, the more precise your treatment plan will be. Hang in there   You’re making progress  
    Michelle 
  10. Like
    Irwin1 got a reaction from Mally in Introduction - Isabelle49   
    I am a lot younger when my father dealt with this. Both my dad and I were ex smokers for several decades. I quit 20 years ago and when my father got it he was in his early 80. I am 63 and still waiting for the thoracic surgeon to get a definitive biopsy after a negative needle biopsy and positive PET scan. 
        Having given you my background, my father chose to hold back his diagnosis from my mom and also from us. But he led his own life together with my mom. I don't know if he was in denial and kept the diagnosis from my mom or because he didn't want to upset her. But holding it back seemed to a bad idea. 
        Since our family all live in Florida using the example of the way we handle hurricanes is a good analogy. If we can track a hurricane it is best to learn of the hurricane when it is in an early stage of development along with alerting the public as soon as possible. This is because many times the hurricane never reaches hurricane stregnth and fizzles out. But if the hurricane starts to develop quickly into a major hurricane we are all prepared for it before it hits. 40 years ago we got little warning of a major hurricane and of course it made things worse because it hit with little time to work together to minimize damage.
         Same exact thing with the diagnosis. To hold back until you show signs of illness maybe from side effects of treatment it may cause more emotional distress. I think everyone in the family would be better off preparing together. In the end when you show signs of the illness it may cause more harm than good.
         However you are the one who knows your family best. So hopefully the feedback we are giving you will help you make your decision. I chose to tell my wife everything I had learned about staging and the two main types of cancer so that she could break the news to her side of the family in the best way.
        I am sorry that you have to deal with cancer thing at this time in your life. I am new to this myself and am learning more and more about this situation every day reading from here from the veterans. 
          God bless 🙏
                  Irwin
  11. Like
    Irwin1 got a reaction from Mally in Mally   
    Maly,
          I'm not sure about how things work here. I am in another forum that I am dealing with Valium addiction. There we start a thread with our name. And we call this a blog. Is this how it works here?
       Hoping for good news from your doctor 🙏
  12. Thanks
    Irwin1 reacted to Tom Galli in Paranoid   
    Irwin,
    You asked why a mass would appear to be a different size on a PET scan vice a CT scan. The CT that accompanies a PET is not accurate enough alone to support a diagnosis. It’s purpose is to providr rough order of magnitude sizing and location information while the radioactive tagged glucose does the diagnostic work. You may find words to this effect on the radiologist PET diagnostic report. 
    Stay the course. 
    Tom
  13. Like
    Irwin1 got a reaction from PaulaC in Paranoid   
    Again the pros have come to my rescue. As I previously made known in a post, I have OCD. I can overthink anything until smoke starts coming out of my ears. It was a good attribute for my career. But it is not such a good thing in other things.
        Thanks for rescuing me again!!!
  14. Like
    Irwin1 got a reaction from Tom Galli in Looking for some hope   
    I second that. Your story is an inspiration and a source of encouragement to just about anyone with LC
  15. Thanks
    Irwin1 reacted to Rower Michelle in Paranoid   
    Hi Irwin-
    You’ve really articulated why it’s so difficult to diagnose lung cancer.  There are often no symptoms. Tumors are sneaky and can hide in chest x-rays if there is “ground glass opacity”.  It looks like snow on the CT scan. 
    I had one of those sneaky tumors which was 3cm. My lungs sounded clear, I had two chest X-rays with a diagnosis of atypical pneumonia, and an indeterminate chest CT.  My pulmonary function was normal, However my oxygen dropped to 90%. No one was looking for a cancer diagnosis. In fact I was discharged from the hospital on Pepcid AC as the attending physician thought my cough was GERD. 
    My diagnosis was only confirmed by the CT guided biopsy and bio-marker testing. 
     
  16. Thanks
    Irwin1 reacted to Curt in Paranoid   
    Yes it is possible to have a 4 cm mass with no other symptoms.  Lung cancer is elusive and often doesn’t show any symptoms until it is larger and has spread.  It is also possible to have missed it on an X-ray.  This photo was posted to a Facebook group I’m in.  I thought it showed what details the different scans could show pretty well.  

  17. Thanks
    Irwin1 reacted to Tom Galli in Looking for some hope   
    Spanmer,
    Welcome here and very sorry to learn of your dad's dx.
    You asked about pleural effusions and if they are an indicator of poor treatment outcomes. A pleural effusion is a buildup of fluid between the outer tissue of the lungs (pleura) and the chest wall. This fluid results from irritation and causes include: congestive heart failure, pneumonia and cancer malignancy among others. They are not necessarily an indication of treatment prognosis because removing the irritation (addressing malignancy) may stop the effusion.
    I recovered after two recurrences with only chemotherapy as my treatment method. I was found to have no evidence of disease (NED) after my first post surgical recurrence from 6 cycles of Taxol and Carboplatin. But the cancer recurred and again 6 more cycles of chemo knocked down the tumors .  Unfortunately, my NED stage only lasted about 6 months and I needed precision radiation to finally eliminate my lung cancer.  So chemo works, and my chemo recipe was 20 years old.  New chemo therapies work much better and actually have a chance of eliminating tumors. Here is a next treatment possibility (read the Immunotherapy paragraph). Your dad's doctors may want to explore combining conventional chemotherapy (pemetrexed-platinum types) with another course of Keytruda.
    As for recovery, I'm a 15+ year survivor of NSCLC (squamous cell) and if I can live, so can your dad.
    Stay the course.
    Tom
  18. Like
    Irwin1 got a reaction from Curt in Lung Cancer & OCD   
    I have OCD and waiting for my diagnosis. What I find that helps is distraction ,distraction, distraction. You must keep your mind busy and not have time to think about the cancer.
         The hard part is finding what distracts you..
        I have become a sports fanatic. I bought the book Anti Cancer Living. And other small things. 
        But the secret is to be a fantastic at something other than thinking about your condition.
         I am not a psychologist. I am only tell you what has helped me!
                 Irwin
  19. Like
    Irwin1 got a reaction from LouT in Introduction   
    I haven't received a definitive diagnosis yet. I just have the CT scan that shows a mass > 4 cm alongside of a positive PET scan with cells lighting up in the mass along with a lymphnode. I don't know the rules invoking God so I won't name him. 
        The truth is that I have been prepared for this in the past three years. I have had neurological problems and bad diagnoses. I have had neurologists give serious disease to my face. I have had a lot of schooling in diagnosing. But I was blind when it came to neurology I was blind. Now I have a gift in the form of a sense of humor. I went to the first neurologist and I could tell that he was trying to install fear in me. Just by observing me for15 mins he looked at me and said ' I have a gut feeling that you have Parkinson's Disease. So I looked at him and said ' Thank God I thought it was something serious 😂
       Then after schooling myself from Doctor Google I saw clearly that I didn't have it. I even went to a.P D forum and they said that it didn't sound like I had it. So I went to a second neurologist and in less than 2 minutes he said that I didn't have PD. But this neurologist gave me 2 diagnoses which I studied and found out that those diagnoses were ruled out because they were autoimmune diseases and prior lab tests showed no autoimmune diseases. So I confronted him with that..And at the end he was honest with me telling me that he didn't know what I had..He and my PCP told me to go to Cleaveland Clinic. But my insurance was very weak with them. They wanted $10k just to talk to them and there was no way I was able to afford it so I decided to just treat the symptoms which is what would have happened even if I was diagnosed at that point.
        Slowly but surely I got better. So the point is that I have had experience with doctors doctors giving me bad diagnosis. The only thing is LC is about 50 times more scarier. And there is no Dr Google to help me out. Dr Google makes things worse.
       I also developed an addiction to Xanax after 35 years and I knew that I had to quit since the whole family of benzodiazipes are now considered bad medications. So I was deeply rooted in an online forum and was on my way cutting down..So my point is that I am familiar with the encouragement and the need to receive support from others. I also am aware of the bonding and love that takes place in forums. I know how to love and also to receive love. The gift that God gave me is the ability is how to encourage. 
        So depending on my definitive diagnosis as soon as I settle down I am going to be participating.
       I also know that with a bad diagnosis my life is forever changed. 
      I think that I mentioned the loss of my 13 year old Golden retriever when I returned from the hospital. When I recovered from the pneumonia at home and got on my Archie Bunker recliner to feel some sort of normalcy it didn't happen. I had my lung mass and Gabriella was gone.
      So there is a spiritual song that I liked to listen to because I knew some day that I would need it..And the lyrics go like this.
       Yesterday is a closing door. You don't live there anymore. Say goodbye to where you've been. And tell your heart to beat again.
         I think that says it all
                      Irwin
     
  20. Thanks
    Irwin1 reacted to Rower Michelle in Introduction   
    Yes. That’s the book. Dr Cohen is the head of Integrative Medicine at MD Anderson. It’s a great read. 
  21. Thanks
    Irwin1 reacted to Tom Galli in Introduction   
    Irwin,
    Welcome here. I've just finished reading the post string and see members have offered sound advice.
    To your questions:
    I believe your oncologist is correct. These days there are often two diagnosis methods for suspected metastatic lung tissue: a histology (visual microscope) examination generally performed in real time as your operation progresses, and a laboratory examination to test the tissue samples for tumor markers that might indicate suitability for new forms of chemotherapy. The histology exam will almost certainly disclose the type and sub type of lung cancer. These could be non small cell or small cell and if non small cell sub types of adenocarcinoma or squamous cell. The lab exam will determine if the cancer can be treated by Targeted Therapy or Immunotherapy.
    I would wait till your current oncologist decides on a treatment plan before seeking a second opinion. Likely, a new doctor will be able to render a second opinion having access to all tests, reports and consultation notes.  It is a good practice to obtain and keep copies of all scan and test reports especially pathology reports (both histology and laboratory).  The new doctor generally calls the practice location of your current doctor to gain access to the consultation notes. It is important to understand the purpose of this second opinion. It is to understand if a different treatment mode is possible.  For example, if your current oncologist specified a plan of conventional radiation and adjuvant chemotherapy, a different oncologist could suggest precision radiation and targeted therapy or immunotherapy.  Generally the diagnosis is not normally discussed during a second opinion.  Histology examination of lung cancer is very conclusive. Another avenue for second opinion would be with a second thoracic surgeon to determine if resecting the tumor or tumors is possible. So, I suggest waiting for your initial treatment plan before seeking a second opinion.
    Stay the course.
    Tom
  22. Thanks
    Irwin1 reacted to Rower Michelle in Introduction   
    For me, its  an internal coping mechanism to say repeatedly in order to get me through a rough spot.  I learned to scull/row as an adult so the patience, perseverance and persistence got me through the awful video sessions & the coaches obvious exasperation due to my lack of life long coordination.   With the triple Ps I won a silver medal in the National mixed Masters Double event.  I figure if I could do that, against all odds, I could beat LC too.  
    In Greg Anderson’s “ Cancer: 50 Essentials Thing to Do” Chapter 32 and 33 talks about this.  A mantra , also called an affirmation, is a positive statement of intent and belief.  It might be a little on the woo-woo hippie side of mind body medicine however for me it helped to reframe my negative beliefs and got me out of planning my funeral back to living a great life. 
    Michelle
  23. Thanks
    Irwin1 reacted to Rower Michelle in Introduction   
    Patience, Perseverance, & Persistence.  That’s my motto- it’s on loan to you until you find your new mantra. 👍
  24. Thanks
    Irwin1 reacted to Donna G in Introduction   
    Irwin, hello welcome.  Glad you found us.  
    We have some in common.  I called for an appointment . I thought I had an orthopedic problem.  I had pain in my right arm and chest.
    They said , you are 50 years old with chest pain ?  Come to the hospital now, you could be having a heart attack !
    I went all labs and EKG was normal.  So they did a chest x ray and found a tumor larger than a golf ball in the upper right apex of my lung
    pressing on nerves going down my arm and also onto my chest wall.  Got an appointment right away for biopsy, and with Onocologist.
    Stage 3B lung cancer.  Luckily I got treatment , chemo  and radiation started quickly with good results so later I was able to have that lobe of lung
    removed and as planned more chemo after.  I was diagnosed12/3/97 .  I am still here and cancer free..
    Please keep us posted on how things are going and feel free to ask questions.
     
    Donna G
  25. Thanks
    Irwin1 reacted to Rower Michelle in Introduction   
    Hi Irwin-
    Welcome.  Yes, blindsided is a good way to put this situation. You feel like a freight train hits you out of nowhere. The most important thing for you to know is you are not alone.  Many of us here in the forum received this advanced stage diagnosis with no warning. LC often has no symptoms until the diagnosis. I was also sent to the ER for a suspected pulmonary embolism after a summer of failed allergy meds, antibiotics & steroids last year. 
    You’re about to go through the diagnostic process which seems to go on forever- you will soon be scheduled for a Brain MRI and then the molecular study to determine what type of cancer you have in order to determine the best course of treatment. The waiting is hard and necessary to get the treatment plan right the first time. 
    I tell everyone during this phase that its okay to feel this way. Give yourself permission to cry- let out all those roller coaster emotions.  
    The second thing we would collectively say is stay away from Dr Google.  There have been more treatment advances in the last 3 years than in the last 30.  There are many long term survivors and growing each year. LC is now treated as a chronic condition, like diabetes or heart disease.  
    Empower yourself by asking us lots of questions, knowledge will put you back in the drivers seat.  Do not be afraid to get a second opinion once the diagnostic process is completed.  Some of us did, some didn’t depending on the access we have to major academic settings ( Like Moffit in FL). 
    There are brighter days ahead, it does take a while to get there, however you will.  Be strong in your faith.  
    Let us know how we can support you.  We’ve all been there in this special club that no one ever thought we would join. 
    We’re your new family here to help you pick up the pieces as you settle into the new normal. 
    Hold onto your hope! 
    Michelle
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