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Curt

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  1. Like
    Curt reacted to Irwin1 in Introduction   
    Wow. You just being here gives me hope. I went to learn about my problems at the American Lung Assoc and their info was pretty bleak. You shouldn't be here according to them. You should have been gone a long long time ago.
        This may sound strange but in more than one way, thanks for being here LoL
  2. Like
    Curt 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
  3. Like
    Curt got a reaction from Rower Michelle in Wife   
    Hi Lynette.  I’m sorry to hear about your husband’s struggles.  I have had surgery, not chemo.  I’m sure others will be along with some advice on how to manage the side affects.  The internet is a great source for terrible information sometimes.  A lot of it with regards to cancer prognosis is dated.  Outcomes are improving daily.  Remission is possible.  Hang in there.  
  4. Like
    Curt got a reaction from LouT in Wife   
    Hi Lynette.  I’m sorry to hear about your husband’s struggles.  I have had surgery, not chemo.  I’m sure others will be along with some advice on how to manage the side affects.  The internet is a great source for terrible information sometimes.  A lot of it with regards to cancer prognosis is dated.  Outcomes are improving daily.  Remission is possible.  Hang in there.  
  5. Like
    Curt reacted to LouT in Wife   
    Lynette
    I'm so sorry to hear about your husband but glad you found this site. I have not had chemotherapy but rather surgery for my lung cancer, but many here have gone through various treatments so I'm sure you'll get some answers to your questions. 
    I just wanted to respond and let you know that the group is here for you through this trying journey. 
    Lou
  6. Like
    Curt reacted to Daniel in Tecentriq Immunotherapy for SCLC Coming to Canada   
    I've been in touch with people at CADTH (Canadian Agency for Drugs and Technologies in Health). They're patient advocacy group that reviews drug evidence and recommends Canadian Provinces to fund it (or not to fund it). While Tecentriq is available in the U.S., we still don't have it in Canada.
    I was told that they will make a decision on Tecentriq in July (if everything goes according to plan). Update status on their decision can be viewed here https://cadth.ca/tecentriq-small-cell-lung-cancer-details
    Let's assume they recommend public healthcare funding for Tecentriq immunotherapy for extensive stage small cell lung cancer, then it will take "many months" for Provinces to negotiate prices with the drug manufacturer. So, let's say it takes another 6 months (hopefully not more), but Tecentriq should be available soon (if everything goes according to plan).
  7. Like
    Curt reacted to BridgetO in Obtained synopsis of CT   
    I agree with those who say you should see the pulmonologist ASAP. You may or may not have cancer, but you do have SOMETHING going on in your lungs and the treatments prescrived aren't helping. Push for the appointment! Hang in there!
  8. Thanks
    Curt got a reaction from 0621121974 in Sue1955   
    Hi Sue.  I’m sorry about your husband.  Cancer is a difficult disease and choosing whether or not to pursue treatment is an even more difficult choice.  Cancer can affect many parts of the body and usually spreads as it progresses.  The symptoms you describe are common symptoms of lung cancer progression.  He can choose not to pursue curative or life extending treatments but he can still can get palliative care.  Palliative treatments are intended to minimize some of the symptoms you are describing, reduce pain and to help improve the quality of life he has left.  I’d also suggest counseling.  What he is experiencing could be a result of depression.  The physical toll that cancer takes on your body is equaled by the emotional one.  Addressing both will make things easier for him.
    I’d also recommend support for yourself.  This group can provide some.  We will be here when you need us.  There are also often local support groups for caregivers.  
    Hang in there.  
  9. Like
    Curt got a reaction from LouT in Introduction - Isabelle49   
    The confirmation you have cancer is difficult.  It took a while for it to sink in for me.  I did find some relief in finally knowing and having a plan. The advances in treatment plans is amazing.  Did they do any biomarker genetic testing?   
  10. Like
    Curt got a reaction from BridgetO in Obtained synopsis of CT   
    Those are small nodules.  The centrilobular description isn’t a term I’ve heard used as an indication of lung cancer.  I agree with Michelle.  Given your other symptoms it’s worth pushing.  Don’t wait around for the medical world to get around to you.  Push the issue.  If it turns out to be nothing than great.  If it turns out to be something then you will have gotten a jump on it.  
    What about emphysema?  Has that been considered?  
  11. Like
    Curt reacted to Isabelle49 in Introduction - Isabelle49   
    Curt, the pulmonologist indicated that samples were being sent out for further testing. I would imagine it’s for biomarker testing.  Glad to have you guys to bounce thoughts off of. 
  12. Like
    Curt reacted to Tom Galli in Obtained synopsis of CT   
    If the insurance standard protocol is to see your PCP, I'd be camped out in his or her office first thing Monday morning with all your symptoms.
    They can't ignore you and I'm sure will fit you in.
    Stay the course.
    Tom
  13. Thanks
    Curt got a reaction from LadyLynda0712 in Obtained synopsis of CT   
    Those are small nodules.  The centrilobular description isn’t a term I’ve heard used as an indication of lung cancer.  I agree with Michelle.  Given your other symptoms it’s worth pushing.  Don’t wait around for the medical world to get around to you.  Push the issue.  If it turns out to be nothing than great.  If it turns out to be something then you will have gotten a jump on it.  
    What about emphysema?  Has that been considered?  
  14. Like
    Curt got a reaction from Tom Galli in Introduction - Isabelle49   
    The confirmation you have cancer is difficult.  It took a while for it to sink in for me.  I did find some relief in finally knowing and having a plan. The advances in treatment plans is amazing.  Did they do any biomarker genetic testing?   
  15. Like
    Curt reacted to Michele in Small cell   
    Hello everybody; haven't been here for awhile just like to inform you that my husband who has smcl cancer limited is in remission for a second time. He has had his 7 th treatment of tecentriq; 5 more to go and is doing very well on it. He is a very lucky man.as u all know small cell is so aggressive but there is still hope ! He goes for his next scan soon to see if he is still in remission; I pray he is. All u warriors out there who has smcl keep fighting ; my husband has had sclc going on 2 years now !thank you for listening
  16. Like
    Curt got a reaction from Tom Galli in Medication commercials on television   
    I hate those commercials.  Then again I’m not sure I enjoy any commercials.  There was a comedy skit I heard about all the symptoms the drug commercials describe.  The comedian jokes that after hearing the symptoms he’s sure he has every one of the diseases in every or of the commercials.
    There may be ways you can protect your estate now.  You should consult with a financial advisor.  Don’t give up on your own recovery just because of money.  I’m sure any heirs would much rather you around then your money.  Hang in there.  You are worth the fight.  
  17. 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.
     
  18. Like
    Curt got a reaction from Tom Galli in Pet Scan on May 21   
    I think it’s referred to as a nodule if it is less than 3 cm.  Anything larger than 3 cm is considered a mass.  
  19. Like
    Curt reacted to Rower Michelle in REMOTE SPACEWALK STUDY for ALK +   
    Hi All, 
    Last week, the Addairo Medical Institute hosted a webinar with Harvard's Dr. Geoff Oxnard regarding a remote, observational study to learn more about ALK resistance mechanisms. 
    Normally, I would post in the ALK+ section, however there are some very useful tidbits about EGFR and understanding the new technology of a blood biopsy.  I thought this might appeal to a broader audience on NSCLC peeps.   It's one hour in duration with the last 20 meetings dedicated specifically to ALK.   
    https://zoom.us/recording/play/DTTF7Cb9W6-zjzWOQljbFJsW5i4ltD3oGVG2UDiRfcjonUX908e7a1O3elhgViqo?continueMode=true
     
    The Addairo Medical Institute hopes to develop additional remote studies using this type of format, therefore it could be helpful to understand how remote observational studies are structured as well. 
    Michelle 
     
     
  20. Like
    Curt reacted to Rower Michelle in Medication commercials on television   
    Hey Isabelle-
    I share your frustration too.  At the time of my diagnosis I was working for a pharmco and saw money wasted. In pharma there is definitely a different orientation to zeros but in the long term it’s worth it when there is a life saving clinical breakthrough. 
    Try not to get ahead of yourself- if you do end up on one of these fancy meds, your pharmacy team will do everything possible to not drain the bank. They will obtain grants or other types of financial assistance from the manufacturers.  My PDL-1 buddy on Keytruda pays zero dollars thanks to her medical team’s research. 
    Right now I obtain copay assistant for my ALK inhibitor which is $15,000 per month.  In 24 months I will transition to Medicare Part D.  Holy cow I’m dreading those days.  Since we didn’t have kids, we are going to do whatever it takes for me to have a high quality of life.  I’m only 51- with my SSD approval I can tap into my retirement savings without penalty.  
    My financial planners are coming up with some strategies to help us, his memorable words were- if you don’t spend it now, your heirs will spend it later.  Sobering advice.  
    You’ve got the fire in your belly to beat this beast!
    Michelle
  21. Thanks
    Curt got a reaction from LadyLynda0712 in New and confused   
    Welcome Lynda.  You’ve had a really tough run recently.  I’m sorry for that.  I’m glad you found this site.  I hope you find it supportive.  Nodules are often nothing but given your other symptoms I would agree with Michelle and follow up on it with some urgency.  Hopefully it’s nothing, but if it is something the sooner you can get after it the better.  
  22. Like
    Curt reacted to Claudia in Pet Scan on May 21   
    Thank you, Curt! I hope all is well with you and everyone here.
     
     
  23. Like
    Curt reacted to BridgetO in New and confused   
    Hi Lynda and welcome. I'm sorry to hear what you've been going through. It sounds both scary and frustrating. I agree completely with MB's and Michelle's recommendation that you see a pulmonologis ASAP.  Hang in there!
    Bridget O
  24. Like
    Curt reacted to Rower Michelle in New and confused   
    Hi there-
    Your story sounds a lot like mine- 51 yo never smoker- treated initially for a chronic cough that didn’t respond to allergy meds. After 9 PCP appointments in 2 1/2 months, I had failed trials of antibiotics, steroids and multiple inhalers. 
    I was a competitive athlete, panicking when my O2 dropped to 90%.  My PCP thought this was typical of atypical pneumonia.  
    It seems that you would probably need to see a pulmonologist with O2 levels that low.  I would consider acting with a greater sense of urgency and not wait for your next appointment three weeks from now.
    Keep is posted. I hope you feel better soon
    Michelle
     
  25. Like
    Curt reacted to MBinOregon in New and confused   
    Hi Lynda,
    Waiting blows. If I were you, I'd find a good pulmonologist (that lung doc) and make an appointment asap.  I haven't had a PCP in over 20 years (before this, I didn't even have Tylenol in my house. Now it's like pharmacy!), so I went from urgent care with persistent cough --> chest xray for the first time in my life --> CT scan --> pulmonolgist --> biopsy (they still didn't know exactly what they were looking at.  Retrospectively, I think they looked at me and did not think I could possibly have lung cancer.) --> diagnosis all in a month.  It's your health, your life.  No one but you can advocate for yourself (disclaimer: I've got no family, so I can say that).
    Good luck to you.
    MB
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