Jump to content

Curt

Members
  • Content Count

    512
  • Joined

  • Last visited

  • Days Won

    21

Reputation Activity

  1. Like
    Curt reacted to LouT in The day after surgery   
    Well, here I am one day after surgery.  Last night was eventful, but today's turning out more trouble-free. 
    They did perform the lobeecromy since  the nodule was squamos cell cancer. I'll know more about my stage and other details at my 3 week follow up visit.  
    There is pain, but it's well controlled with Tramadol and an occasional half dose of delaudid. I think the chest tube hurts now than the surgery itself. I was surprised to wake up with 4 IV's in me, but they took 2 of them out a little while ago.  I've sat up in a chair and did my first walk (which felt good to do) and while I could feel the surgery it wasn't terrible. 
    I was up most of last night so I'm a bit drowsy today. The chest tube pump fell and broke. It only took a minute or two before I felt pain in my right side. They brought in an x-ray machine and determined I was filling up with air. Luckily they got another unit, cranked it up and pretty quickly my pain stopped. Then they had to catheterize me. Apparently the anesthesia can put parts of your body to sleep for awhile.  So between those incidents, numerous checks and blood work the first night wasn't a lot of sleep. I'll get more today. They are thinking I may leave ICU and go to a surgical ward today it tomorrow. 
    Curt, you were right, I do feel better than I thought I would after the operation.  Even though I know I have a way to go I'm not suffering so much as I imagined before the surgery.
    I'll post here again when I have more to share. 
    Lou
  2. Like
    Curt reacted to LexieCat in The day after surgery   
    Sounds like everything went well!  Of course, it's preferable to wake up to find there was no cancer, but catching it early and getting it out is the next best thing.
    Glad to hear you're feeling OK.  Don't be surprised if you wind up doing a LOT of coughing--after the first few days, sore abs from coughing was the most painful part.  Keep doing your breathing exercises--the coughing is good for you and will lessen in a week or two.  
    Have they told you yet when you can go home?
  3. Like
    Curt reacted to Tom Galli in The day after surgery   
    Lou,
    You are my hero!  Posting one day after major surgery is quite a feat. 
    I had a similar chest tube “bucket” problem that caused pain. Moving from ICU to surgical ward is a big step!
    Stay the course. 
    Tom
  4. Like
    Curt got a reaction from Tom Galli in Ugh Scan Time   
    I got different sizes on all of my scans, they were all up or down a mm.  Just breathing in more or less when you hold your breath for the scan can change the size.  It can also change the way it looks in some ways.  I don’t know if you’ve seen one but it’s unbelievable to me that they can tell anything from them.  I really hope their are better diagnostic tools in the future.  Prescreening is great, but the tools to diagnose need to be better.  If you are uncomfortable with your doctor’s recommendation you can get a second opinion.  I did.  It turned out to be the same recommendation from both.  
  5. Like
    Curt reacted to Rower Michelle in Second Annual ALK Conference in Atlanta & T-Shirt Fundraiser   
    To All My ALK Family that are not on Facebook:
    https://www.eventbrite.com/e/alk-positive-summit-2019-registration-61132723622 
    My peer mentor is on Facebook and keeps me informed of all the ALK initiatives.  In the above link, is the registration for the second annual ALK FUN Summit in Atlanta from August 2-4th in Atlanta.  It's a free conference that I wanted to ensure you all had an opportunity to participate.  (All ALKs and caregivers are welcome). 
    If you are unable to attend, please considering ordering your ALKWEAR- THERE ARE ONLY FOUR DAYS LEFT TO ORDER. 
    https://www.customink.com/fundraising/alk-positive?pc=WELC-170506&utm_campaign=fr_sup_welcome&utm_source=fr_supporter_welcome&utm_medium=email&utm_content=campaign
    So far, there's almost 40 people registered!  I hope to be able to meet some of my fellow ALKs!  Please come or buy some ALKWEAR. 
    Michelle 
     
  6. Like
    Curt reacted to BridgetO in Has anyone experienced this kind of reaction?   
    I like Michelle's idea of an elevator speech.  I can  imagine her as a cheerleader for lung cancer awareness. Go Michelle!
    I've been generally open about my cancer diagnoses, all 3 of them. I've also been pretty upbeat when talking to others about cancer, and i don't avoid the word. I'm acutely concious of the stigma associated  with some diseases, since I've  had a number of friends die of AIDS. Lung cancer has some of the same kind of stigma as HIV and I think a way to diminish this is to banish it for myself by talking about it if it was just any other illness.. Yep, I had surgery, it was fairly easy, and I'm fine now!  I do mention that I was fortunate that my cancer was discovered early and so I don't need other treatment. Just like my spouse might talk about her gall bladder surgery. I save any moaning and groaning and feeling sorry for myself  for people I'm closest to and for this forum  (lucky you!).  I generally answer questions anybody has (unless they are TOO personal). The question "did you smoke?" is problematic. I didn't, but I'm uncomfortable with the question because it tends to divide us into "the unfortunate- it's not fair!" and the "it's your own fault".  It's important for people to know that anybody who has lungs can get lung cancer and  we're all in this together.. Nobody choses this disease and nobody deserves to get it, whether they smoked, breathed asbestos, or lived in a place with high radon.
    So thats how I deal with it, and I don't get a lot of those " death sentence "  pity type looks. Everybody  has to deal with this stuff in the way they're comfortable with. I know, as to lung cancer, that it may be easier for me because my cancer was diagnosed early and so was relatively  easy to treat. For my gynecologic cancer, that wasn't so. It was advanced, my surgery was big and had long recovery, followed by radiation, chemo, and  treatment side effects, some of which are permanent. My approach with others was generally the same as with the lung cancer, and I didn't get many sad, death sentence looks then either. I did get "you' re so brave" to which I generally responded with something like " I'm not brave, I just dd what I needed to do to save my livfe and now I'm living my life." 
    So Deb, do what your comfortable with. Except for close family and others you depend on for support, it's really none of their business and what you chose to tell them is up to you!   Hang in there and live the life you want. 
    Bridget O
  7. Like
    Curt got a reaction from Lisa L in Has anyone experienced this kind of reaction?   
    Good for you for getting involved with those organizations.  I’m also a never smoker, recent surgery and do get those reactions.  It’s always uncomfortable talking with people I barely know about personal health issues.  It’s also uncomfortable not knowing who knows what.  I find myself having to ask my wife how much different people know when I know we’ll be seeing them.  Most everyone knows I had surgery.  I have not shared with everyone the specific of why I had the surgery.  I had a dad on my sons baseball team ask me how I was doing the other day.  I couldn’t remember what specifics he knew so I just kept it to a simple “I’m feeling good, thank god.  Thank you for asking”.   I had a vendor through work ask me the other day.  He seemed to be more aware of the specifics so I got further into it.  I usually focus on how lucky I feel that it was diagnosed early and the  positive aspects of my prognosis going forward.  I do also have the complicating factor of three young kids, 10/8/6 year old boys.  They know I had surgery, they know I had part of my lung removed because there was something wrong with it.  We have not used the word cancer with them. I do need to be careful who I share that info with in their circles.  I do have a sense that I should be talking to as many people as possible about it.  There is a smokers stigma to this disease.  The more people who realize this disease can affect anyone, the better awareness of that and the better the chances it gets the funding it needs for a cure.  I’m not fully there there yet but I’m working on it.
  8. Like
    Curt reacted to Tom Galli in Has anyone experienced this kind of reaction?   
    Deb,
    Lung Cancer is deadly! It is a real shame that our National Institute of Health and the Congress don’t translate deadly into research dollars. 
    I remember the dead man walking stare I received from those that found out. Word traveled quickly in my case because I had an episode of coughing up blood while at work. Everyone knew and there was a great deal of surprise when I returned to work after a year of surgical mayhem. Then came the two recurrences and again the death stare. A lot of people told me my experience was the catalyst for stopping smoking. So being an awareness model is productive but my frustration is translating my experience into more research resources. When people talk to me now about lung cancer, my first words are research and LUNGevity. 
    We’ve got to get past this “self induced” stigma our society has. HIV/AIDS, drug addiction, and even obesity are well researched despite being mostly self induced. And, very sadly, about 18% of us are never smokers. 
    So, rather than avoiding the conversation, turn the event into a research advocacy moment. Targeted therapy and immunotherapy have made a huge difference for many of us but those advances are not enough. 
    Stay the course. 
    Tom
  9. Like
    Curt reacted to Rower Michelle in Has anyone experienced this kind of reaction?   
    Hi guys, 
    Yes, I totally get what you are talking about Deb.  Initially when I had to let people know why I wouldn't be returning to work (like ever again), the look on their faces was what I would describe as shattered.   Since I'm seven months into this, I really don't have any qualms about sharing my diagnosis with anyone.  It was such a shock for me, my family friends, teammates and colleagues.   What I've done is develop a short "elevator" pitch (I used to head up a sales organization) that is matter of fact.  I don't tell anyone about the Stage IV part as then people have many preconceived and uninformed assumptions.  It's been my experience when people have that over the top reaction, it's really their own fears they are facing.  Sometimes I think I'm coping better than my friends.   So I focus on the positives, emphasize the advances in research then quickly move on to the regular life "stuff".    
    It is my great hope that the "surgery" peeps can at some point serve as our collective voice and lobby for the severe underfunding of lung cancer research.  It's not until we start making a LOT of noise that we can begin to benefit from the cancer advances.  Now that we are living with lung cancer as a curable condition (in early stages) and chronic condition (with treatment) look out Capital Hill- pretty soon there will be a wave descending upon them.   
    Michelle 
  10. Like
    Curt got a reaction from Rower Michelle in Has anyone experienced this kind of reaction?   
    Good for you for getting involved with those organizations.  I’m also a never smoker, recent surgery and do get those reactions.  It’s always uncomfortable talking with people I barely know about personal health issues.  It’s also uncomfortable not knowing who knows what.  I find myself having to ask my wife how much different people know when I know we’ll be seeing them.  Most everyone knows I had surgery.  I have not shared with everyone the specific of why I had the surgery.  I had a dad on my sons baseball team ask me how I was doing the other day.  I couldn’t remember what specifics he knew so I just kept it to a simple “I’m feeling good, thank god.  Thank you for asking”.   I had a vendor through work ask me the other day.  He seemed to be more aware of the specifics so I got further into it.  I usually focus on how lucky I feel that it was diagnosed early and the  positive aspects of my prognosis going forward.  I do also have the complicating factor of three young kids, 10/8/6 year old boys.  They know I had surgery, they know I had part of my lung removed because there was something wrong with it.  We have not used the word cancer with them. I do need to be careful who I share that info with in their circles.  I do have a sense that I should be talking to as many people as possible about it.  There is a smokers stigma to this disease.  The more people who realize this disease can affect anyone, the better awareness of that and the better the chances it gets the funding it needs for a cure.  I’m not fully there there yet but I’m working on it.
  11. Like
    Curt reacted to Rower Michelle in Session at Ann B. Barshinger Cancer Institute, Lancaster PA   
    Hi Irene
    How did your appointment go yesterday? 
    Michelle
  12. Like
    Curt reacted to TNChuck in Couple of questions   
    Just checking in, she's doing OK considering. She's started the second 4-month round of chemo every three weeks with Keytruda and another drug since they moved her off of the Carboplatin. Nothing has gotten worse and all the scans came back negative. She also had the bag collecting the fluid in her lungs removed and so far there's been no new fluid.
  13. Like
    Curt reacted to Tom Galli in Ugh Scan Time   
    Lisa,
    With nodules, bigger is not better and same size is not bigger. 
    I see this as a good news report. Bigger, worry; not don’t. Go to a spa!
    Crusin’ for you!
    Stay the course. 
    Tom

  14. Like
    Curt reacted to Rower Michelle in Ugh Scan Time   
    Hey Lisa-
    You’ve got your priorities straight for tomorrow! Take this one day at a time-sounds like the pulmonologist is totally on top of this. There’s pros and cons to each side of the equation. 
     My Mom was actually scheduled for a CT biopsy of her lung nodules on Monday (4mm) to evaluate for endometrial cancer progression. They’ve been watching these nodules for two years.  Unfortunately the docs weren’t able to do the biopsy (long story).  After a case conference with all the involved docs they elected to do another scan in three months since there doesn’t appear to be any growth.  There’s only a small SUV uptake-marginal.  Waiting seems to be the safest way to proceed. Those nodules could be anything including scar tissue. 
     A biopsy is not without risk & they may not get sufficient tissue sample. In my case, we skipped the broncosopy and went directly to the biopsy since the pulmonologist thought they could get a good tissue sample. The biopsy was thought to be the most rapid pathway to a diagnosis ( at the time they were thinking fungal infection!!)   
    See what the pulmonologist recommends on Friday.  Doc might have a better recommendation after looking at all the scans.    
    Enjoy the spa & have a nice glass of wine (or two!)
    Hang in there. 
    Michelle
  15. Like
    Curt reacted to Deb514 in Proper Introduction   
    Absolutely  we all need to either have an advocate or try as I did to advocate for my self. I just kept trying till I finally got someone to listen. SCLC is so fast spreading that often isn't  found till it is extensive. 
    Kinda bummed  today no chemo this week. My counts were down. Hopefully  they will be up next week.  
  16. Like
    Curt reacted to LouT in Proper Introduction   
    Hi Deb,
    Glad you found the site.  I'm new here as well and scheduled for a wedge biopsy and (90% probability) lobectomy on Thursday, May 2nd.  But I can tell you that this site has helped me more than I could expect.  There are so many experiences and stories of recovery here that it has helped me to face this disease differently than I could have hoped for.  I pray you'll find the same kind of support here.  While I'm just beginning my tale I can already say that your situation reinforces the fact that we have to be our best advocates and keep tabs on what is being done for and to us at all times.  I look forward to watching a successful outcome unfold for you.

    Lou
  17. Like
    Curt got a reaction from Tom Galli in I’m so happy I found you all!   
    Hi Debbie. I had a right upper lobe lobectomy on Feb 26.  I can relate to the strange breathing sounds and being self conscious of them.  It has gotten better.  Tomorrow is 9 weeks for me.  My breathing is pretty much back to normal.  No more funny sounds.  I have the occasional gulp sound when I’m talking to much and forget to breath and need to catch my breath.  I am just getting over a cold where I coughed a TON.  That seems to have helped, although the coughing wasn’t fun it helped to strengthen my lungs.  I do have a slight wheeze sound when I cough.  Walking 2 miles a day is AWESOME.  Keep that up.  I also did the spirometer a lot.  Two other exercises I do.  One was to huff like I was trying to fog a mirror.  I do those ten times, twice a day. The third was coughing.  I’ve been doing that a lot because of the cold and the tickle. I have a bit of a lump that turns into a tickle then back into a lump in my throat.  That helps keep me coughing.   
    The feeling different part hasn’t gone away for me, even though I don’t breathe different anymore.  I’m still working through that one.  
  18. Thanks
    Curt got a reaction from PaulaC in My Mom   
    I’m sorry to hear about your sister Paula.  
  19. Like
    Curt reacted to Donna G in janisk   
    Hello Jan,  glad you found us.
    I was younger than you when I was diagnosed, I was just 50 years old.  I was stage 3B.
    I started with daily radiation on week days for 6 weeks and also chemo's. 
    On my scan after that they saw it had shrunk so they decided they would do surgery with more chemo after.
    I pray respond well to the treatment.  It was hard for me !   The good part is this summer I will turn 72 !  
    Treatments today are so much more and varied than years ago.
    Please keep us updated on how you are and don't  fear  to ask questions.
    Donna G
  20. Like
    Curt reacted to atcrunner in wife diagnosed, don't know where to start   
    Thank you all for the replies! My wife and I are ready to have a great weekend. The dr was not in Friday so we’ll be waiting at least til Monday to get more information on her specifics. 
    Tom, thank you for the links, we’ll be going through all the information we can find anywhere we can find it. 
    As sad as I am for anyone going through this, I’m glad to know we’re not alone (weird).  
     
    Thank you all. We’re David and Kristen by the way. 
  21. Like
    Curt reacted to Barb1260 in Durvalumab   
    Thanks for the support. I honestly can’t complain. Others are far worse off than I am. My minor issues are temporary. I’m thankful I wake up, can breathe, have a job to go to because lord knows I gotta have a place to go every day to keep me sane. Now to figure out how to get a beach trip squeezed in somewhere. 🏖
  22. Like
    Curt reacted to Rower Michelle in What happens when Tagrisso stops working?   
    Hi Marie-
    I am an ALK mutant taking an inhibitor drug very similar to Tagrisso.  We all learn to live with the uncertainty of what to do when our magic pills stop working which can be YEARS from today.  So for now I live life everyday, laugh and try to do at least one fun thing each day.   While I’m no longer working, my life as a continuous learner continues.  I’m into tai chi ( but not very good at it yet so who cares? )  and learning this whole Food as Medicine thing in the hopes of increasing the length of the inhibitor ride.
    Ask your onc what the Plan B is if it gives you some peace of mind. (sometimes EGFRs go onto a chemo cocktail successfully) like Carbo/Taxol.  My onc gave me Plan B & C with the hope in another year or two there’s going to be a next gen inhibitor around  
    With all the EGFR research ongoing, clinical trial participation is a strong possibility.  I’d like to think that when the time comes, there will likely be a new & better treatment even possibly a cure on the horizon. 
    Try not to let the black cloud take up too much space.   
    You might find some more specific answers on the EGFR Facebook page.
    Michelle
     
  23. Like
    Curt reacted to LexieCat in wife diagnosed, don't know where to start   
    HI there, and welcome.  
    Sorry to hear about your wife's situation.  You will know a lot more once the pathology report comes back.
    The good news is that cancer treatments have advanced significantly in recent years. The type of cancer and the stage will determine what kind of treatment she will need.  It's important to not get too far ahead of yourself until you have more info.  
    Do you know the size of the mass?  She will probably be getting a PET/CT scan to evaluate the likelihood of any metastasis (spread).  That's part of staging.
    Glad you found us--this is a great place for information and support.
  24. Like
    Curt reacted to Rower Michelle in wife diagnosed, don't know where to start   
    Hello and Welcome-
    We all know how devastating this news is and we are here to support each other.  The next few weeks will be a bit of a blur with the upcoming scans followed by waiting, waiting & waiting.  The diagnostic process can take several weeks which is critical to the development of a treatment plan.   Check in with us for guidance along the way.  
    As far as a treatment site, if there is a National Cancer Institute (Emory might be one) consider going there.  At a comprehensive cancer center, membership has its benefits.  There are many resources available PLUS a team of schedulers to coordinate all the appointments. 
    You may want to look at the Cancer Center of America reviews and outcomes.  There has been some concern about “quackery” reported.  Ultimately you must have complete confidence in the oncologist you select.  For me, bedside manner is irrelevant.  I want the super smart science geek as my team captain.  
    Check out Tom’s Blog on the Lung Cancer Top Ten.  Super valuable advice for getting started.  We went to Staples to purchase a good old fashion calendar planner which really helped to keep things organized.
    Stay in close contact with your insurance to ensure necessary services are approved in orders to avoid any surprise bills.  
    If your wife was working you’ll want to keep track of FMLA and short term disability benefits too.  
    Its a whole lot to keep track of all at once.  It’s overwhelming.  This group knows how to take care of each other so no need to go it alone   Lots of experience here to assist in navigating the new normal.  
    Prayers for you! 
    Michelle
     
  25. Like
    Curt reacted to Tom Galli in wife diagnosed, don't know where to start   
    This is such bad news!  Ok, let's get to work.  Here are my thoughts on things you can and should be doing now.
    First, find a thoracic surgeon. Use your general practitioner, family contacts, circle of friends, religious congregants as sources. You want a surgeon that specializes in removal of lung tumors and you are looking for a very well known surgical center that does thousands of lung cancer tumor resections in a year.  You want a hospital that has a pathology lab adjacent to the OR so in process path reports can be obtained in near-real-time during surgery. You want a hospital with an ICU that has deep experience in dealing with post surgical lung problems. You are not looking for a cancer hospital here, but a world class surgical center. Here are my thoughts on evaluating a thoracic surgeon.
    Next, find a medical oncologist.  Use the same sources as the surgeon but the practice space should receive consideration.  If chemotherapy is in the cards as a treatment modality, and I think you should consider it in play for doctor search purposes, then you'll want an oncology practice that offers scans, radiation oncology, and chemotherapy in a small clinic. Lung cancer treatment is well defined by "National Standards of Care."  That means, almost everyone with the same type, sub type and stage of lung cancer will receive identical treatment that conforms to the National Standard of Care.  If medical oncology treatment is required, you don't need a world class center to administer it.  You want a place that is comfortable and convenient to your home.  Nevertheless, finding the right medical oncologist is extremely important because after first and second lines of treatment are administered, the national standard of care becomes the skill and intuition of the medical oncologist.  Here is my hint for a good medical oncologist: one who is chronically late to appointments because of the time they take to listen and explain to patients. 
    Third, start casting the net to get help with caring for your children.  You will need help.  Mom will be out of the child lifting business recovering from the least intrusive means of lung surgery for quite a while.  If chemo is planned before or after surgery, figure about 3 days in every three weeks that Mom won't be able to care for children.  Dad will also need to care for Mom.  Talk to your company HR and see if they can arrange a flexible work schedule to help you care for your children and wife.
    This is not the time to consult survival statistics.  Instead read this. And, here is my Ten Ways to Survive Lung Cancer suggestions that may help.
    We understand what you are going though. We also know there is life after a lung cancer diagnosis, substantial life. I personally believe attitude towards treatment and outcomes is very important.  You'll need to coach your wife up in that regard. Questions? This is the place.
    Stay the course.
    Tom
×
×
  • Create New...