Jump to content

Curt

Members
  • Content Count

    434
  • Joined

  • Last visited

  • Days Won

    18

Reputation Activity

  1. Like
    Curt reacted to TJM in Google not all bad...just need to be smart   
    I only found this site a  couple days ago and am very glad I did. I just keep reading post after post and it calms me down a bit.
    Feeling much more relaxed now that there is a solid plan in place, got some Adryal and sipping a beer (no lectures) and feel confident I will get a good night's sleep. Not even going to think about preparing for surgery until tomorrow. But to my main point.
    I agree with 99% of what the strong and supportive posters say (you know who you are) but I think Google can be a very powerful tool. I spent the first 2 weeks using it before looking for a support group. I will brag a bit and say that I am very good at using it. As an Engineer it is a very valuable tool for work so I am proficient. Two quick examples regarding using it for medical questions that I have experienced first hand.
    Around 2006 I started getting debilitating head aches that lasted between 45 minutes to over 3 hours and then just suddenly went away. My first thought was a brain tumor. My doctors first thought was sinus infection. Long story short, I was able to come up with the correct diagnosis which was cluster headaches. If not for that I cringe to think how long it would have taken to get the right treatment. I would not wish these headaches on my worst enemy. If you want a taste check out ClusterHeadaches.com....a board similar to this. I thank God that I am not in a headache cycle right now.
    The second example is my oldest son who started exhibiting strange rashes. With the assistance of a wise older Dr and researching on Google I was able to nail down what the diagnosis was based on his blood tests and was able to prepare myself for that struggle well a head if time. In his case it was Idiopathic Aplastic Anemia...Dr speak for a complete shutdown of his bone marrow for unknown reasons. This disease is so rare I could not find a support group other than the wonderful staff at OHSU. By the grace of God my son was one of the lucky ones and responded perfectly to the standard protocol and has been cured for over 10 years. It was searches using Google which allowed me to advocate for his treatment but more importantly got me ahead of the curve.
    Bottom line...Google is a powerful tool, just make sure to know the dates of the publications you read, take the time to learn the lingo and value the history and evolution of the treatment.
    Sorry for the long post. Blame the Beer...not the Adryal.
    Peace
    Tom
  2. Like
    Curt reacted to Rower Michelle in Stable!   
    Hi everybody,
    Got some very good news today post scans.  The brain MRI is clear, the lymph nodes are stable, the bones are stable and the right lung is “stable and improved consistent with radiation”. What?? I’ve never had radiation, however the onc translated that means the area where the tumor was is scar tissue from the targeted therapy (alectinib) doing its job.  Doc wants to start spacing scans out so this next one is 3 1/2 months out, then we will creep for 4 months.  Labs will continue every six weeks.  
     
    The pulmonary edema is improved too. We settled on Lasix 20mg, five days a week with an occasional “social break day” if we’re heading to a movie.  
     
    There’s always a hitch at these appointments and this time we’re going to need to address persistent weight gain from the alectinib. After 15 months of therapy,  I’m 23lbs above my normal weight (30lbs from my rowing weight).  Unfortunately the dietician at the clinic is so terrible even my doctor agrees. He said I’m resourceful enough to find one independently. ( I think that’s code for he doesn’t want to hear anymore complaints about the in house dietitian because he’s stuck with her.) Normally he would recommend intermittent fasting but that is not possible on this drug due to the food requirement for absorption rates.  It’s a sh** load of calories with a high fat twice a day twelve hours apart.  It’s hard to do.  We’re going to continue to closely monitor my thyroid too.  

    I’m enrolled in the LiveStrong program at the YMCA for the next 12 weeks which might help. 
    Next week we’re off to Amelia Island, upon return I will endeavor to find a nutritionist.  
     
    Thank you guys for being there, we’re all playing the long game here!  
    Carry on! 
    Michelle
     
     
  3. Like
    Curt reacted to TJM in Meet my surgeon tomorrow   
    Great news in my opinion. Surgery scheduled for next Tuesday. Will be a VAT to remove the lower lobe of my right lung. My lung capacity is excellent now so Surgeon is not concerned about my lung capacity after Surgery. He is confident that this will be curative but will still discuss postoperative Chemo after Surgery. Less stressed now. Probably last a day or two then I'll stress the surgery.
    Thanks to all for the support. Now I need information on how to quickly repair a torn meniscus on my wife.
    👍
    Tom
     
  4. Like
    Curt got a reaction from TJM in Meet my surgeon tomorrow   
    The uncertainty and not knowing was the hardest part for me as well.  Once I knew what needed to be done I didn’t think about it much...until a day or two before surgery.   An engineer/manager personality will suite you well on this journey.  It takes a fair amount of persistence to see it through.  
  5. Like
    Curt reacted to Tom Galli in Meet my surgeon tomorrow   
    Tom.
    I'm also an engineer and was the worst kind of patient. Problem solving is my business, but my skills only work when solving problems with things. They have no impact on people and their (my) disease. With the exception of knowledge about statistics, applying engineering skills to surgery, chemotherapy, doctors, nursing and progression produced mayhem.
    Initial treatment of lung cancer is pretty straightforward. Surgery is the preferred first and best option. If not surgery, then chemoradiation following a well established formula called a national standard of care. But if these treatments do not arrest, treatment transitions from established procedure to medical art. The medical oncologist is the artist and tries to guess which of the available methods might work. It is an educated guess but lung cancer mutates very quickly to combat drugs and that is why it is so dangerous.
    Reading into our disease is essential knowledge. Here is a good start. 
    Welcome here. You may have a bunch of questions after your surgical consult and this forum is a great place for answers based on actual experience.
    Stay the course.
    Tom
  6. Like
    Curt got a reaction from G.A.M. in Back on the Roller Coaster   
    @G.A.M. I hold surgery as treatment in high regard.  I had an upper right lobe lobectomy via video assisted thoracoscopic surgery (VATS) at the end of last February.  Recovery is different for everyone.  Here was my experience.  It was three incisions, one under my arm, one on my side and another on my upper abdomen.   After the surgery I had a drain tube in the incision on my side.  I had the surgery on a Tuesday night, was up and walking short distances Wednesday morning and released on Friday afternoon.  Requirements for release were that I was able to walk each day, my chest was clear of air pockets and the drain was removed.  I know others have been released with the tube (drain) in.  They will manage your pain really well while in the hospital.  Don’t be a hero, take the medicine.  I decided I was feeling so good that I could go a little longer with no pain meds.  I was very wrong.  Once I was home I slept a lot.  The first few days I had an arm chair next to my bed.  I would get up, eat, walk, sit there for a bit then go back to sleep.  I took pain medicine until Sunday and then moved to alternating Tylenol and Motrin.  The pain pills caused constipation and the gabapentin (nerve blocker) made my head feel like it was spinning.  I felt much better without both, you should take whatever you need to take for as long as you need to take it to make sure you aren’t in pain.  You should walk and do breathing treatments as much as possible.  Both are easier if you aren’t in pain.  By Monday I ventured to the coach and was able to stay up for longer periods of time but was still tired.  It took about ten days for me to venture out of the house for a haircut, two weeks for me to drive.  Three weeks before I went back to work.   I did not require any follow up treatment and have been NED since the surgery.  I have some numbness in the side where my surgery was performed and some pulling internally when I cough.   Neither are painful or disruptive.  Surgery isn’t fun but it is not as bad as I imagined it would be.  My breathing is back to pre surgery levels and I’m not limited in my daily activities.  Some tips:
    - the wedge pillow others have mentioned.
    - a small pillow to squeeze when you sneeze or cough.  
    - walk as much as you can. 
    - do the spirometer (breathing exercise) as much as possible.  
    - rest as much as you can.  

     Any other questions along the way please ask.  I’ll be rooting for you.  
  7. Like
    Curt got a reaction from Tom Galli in Back on the Roller Coaster   
    Hi @TJM   I responded to your other post.  I’ll try to answer your questions here.  

    The only prerequisite to surgery for me was a pulimonary function test and the normal preop blood work.  I had my consult on December 24 (yes Christmas Eve) of 2018 and the Surgery in February 28.  I could have had it in January.  I delayed it a bit so I could go on an already  schedule family vacation.  At the time I didn’t know it was cancer.   There was a 60% chance I was removing a benign nodule.  It will all depends on the surgeons availability.  
     
    People do have to have “open” surgery if the tumor is too large or more often if it is in a place they can’t get to via VATS.  Your surgeon will be able to tell you which is required.  I had mine via VATS.  The recoverY time and ongoing side affects are different for both.   VATS is the easier of the two and is as affective as open surgery when used in the right circumstances.
    Good luck today.   
     
    @G.A.M. I wasn’t clear if your surgery was today or next Thursday.   If it’s today good luck.  Let us know how you are doing when you feel up to it.  
  8. Thanks
    Curt got a reaction from TJM in Back on the Roller Coaster   
    Hi @TJM   I responded to your other post.  I’ll try to answer your questions here.  

    The only prerequisite to surgery for me was a pulimonary function test and the normal preop blood work.  I had my consult on December 24 (yes Christmas Eve) of 2018 and the Surgery in February 28.  I could have had it in January.  I delayed it a bit so I could go on an already  schedule family vacation.  At the time I didn’t know it was cancer.   There was a 60% chance I was removing a benign nodule.  It will all depends on the surgeons availability.  
     
    People do have to have “open” surgery if the tumor is too large or more often if it is in a place they can’t get to via VATS.  Your surgeon will be able to tell you which is required.  I had mine via VATS.  The recoverY time and ongoing side affects are different for both.   VATS is the easier of the two and is as affective as open surgery when used in the right circumstances.
    Good luck today.   
     
    @G.A.M. I wasn’t clear if your surgery was today or next Thursday.   If it’s today good luck.  Let us know how you are doing when you feel up to it.  
  9. Thanks
    Curt got a reaction from TJM in Meet my surgeon tomorrow   
    When it rains it pours Tom.  Good luck with your consult today.   I had to do my initial consult alone as well.  Wasn’t fun.  Any questions just ask.   
  10. Like
    Curt got a reaction from TJM in Am I doing a right thing? I am new this forum   
    @Ted I was in the exact situation last year.  I went into surgery not knowing and came out with Stage 1 Lung cancer.  If it wasn’t cancer they would only have taken a wedge with no change in lung capacity.  Since it was cancer they removed the entire lobe.  I have not required any follow up treatment.  My lung capacity is back to normal.  I have a little bit of numbness.  Surgery is the gold standard for treatment.  It does feel barbaric to do it without knowing for sure but I did and I’m glad I did.  
  11. Like
    Curt got a reaction from BridgetO in 3mm bottom right lobe   
    Hello @marinisa.  Hearing you have a nodule in your lung is terrifying.  Some things that may calm your nerves.  1) a 3mm is VERY small.  The small edge of a nickel is 2mm.  I’m surprised they could even see that on a scan.  2) the majority of nodules are NOT cancer.   
     
    You are correct that a CT scan will not be able to definitively diagnosis a single 3mm nodule.  It’s also probably too small to biopsy.  They will likely have you get scans every six months to monitor it.  If it grows beyond 10 mm they will probably do a PET scan.  Depending on the result of the PET they may try to biopsy it.  All of that can take years.  The longer you go with no changes to the nodule the more likely that it is not cancer, remember most are not.  
  12. Like
    Curt got a reaction from Tom Galli in 3mm bottom right lobe   
    Hello @marinisa.  Hearing you have a nodule in your lung is terrifying.  Some things that may calm your nerves.  1) a 3mm is VERY small.  The small edge of a nickel is 2mm.  I’m surprised they could even see that on a scan.  2) the majority of nodules are NOT cancer.   
     
    You are correct that a CT scan will not be able to definitively diagnosis a single 3mm nodule.  It’s also probably too small to biopsy.  They will likely have you get scans every six months to monitor it.  If it grows beyond 10 mm they will probably do a PET scan.  Depending on the result of the PET they may try to biopsy it.  All of that can take years.  The longer you go with no changes to the nodule the more likely that it is not cancer, remember most are not.  
  13. Like
    Curt got a reaction from Steff in 3mm bottom right lobe   
    Hello @marinisa.  Hearing you have a nodule in your lung is terrifying.  Some things that may calm your nerves.  1) a 3mm is VERY small.  The small edge of a nickel is 2mm.  I’m surprised they could even see that on a scan.  2) the majority of nodules are NOT cancer.   
     
    You are correct that a CT scan will not be able to definitively diagnosis a single 3mm nodule.  It’s also probably too small to biopsy.  They will likely have you get scans every six months to monitor it.  If it grows beyond 10 mm they will probably do a PET scan.  Depending on the result of the PET they may try to biopsy it.  All of that can take years.  The longer you go with no changes to the nodule the more likely that it is not cancer, remember most are not.  
  14. Like
    Curt got a reaction from Tom Galli in Back on the Roller Coaster   
    @G.A.M. I hold surgery as treatment in high regard.  I had an upper right lobe lobectomy via video assisted thoracoscopic surgery (VATS) at the end of last February.  Recovery is different for everyone.  Here was my experience.  It was three incisions, one under my arm, one on my side and another on my upper abdomen.   After the surgery I had a drain tube in the incision on my side.  I had the surgery on a Tuesday night, was up and walking short distances Wednesday morning and released on Friday afternoon.  Requirements for release were that I was able to walk each day, my chest was clear of air pockets and the drain was removed.  I know others have been released with the tube (drain) in.  They will manage your pain really well while in the hospital.  Don’t be a hero, take the medicine.  I decided I was feeling so good that I could go a little longer with no pain meds.  I was very wrong.  Once I was home I slept a lot.  The first few days I had an arm chair next to my bed.  I would get up, eat, walk, sit there for a bit then go back to sleep.  I took pain medicine until Sunday and then moved to alternating Tylenol and Motrin.  The pain pills caused constipation and the gabapentin (nerve blocker) made my head feel like it was spinning.  I felt much better without both, you should take whatever you need to take for as long as you need to take it to make sure you aren’t in pain.  You should walk and do breathing treatments as much as possible.  Both are easier if you aren’t in pain.  By Monday I ventured to the coach and was able to stay up for longer periods of time but was still tired.  It took about ten days for me to venture out of the house for a haircut, two weeks for me to drive.  Three weeks before I went back to work.   I did not require any follow up treatment and have been NED since the surgery.  I have some numbness in the side where my surgery was performed and some pulling internally when I cough.   Neither are painful or disruptive.  Surgery isn’t fun but it is not as bad as I imagined it would be.  My breathing is back to pre surgery levels and I’m not limited in my daily activities.  Some tips:
    - the wedge pillow others have mentioned.
    - a small pillow to squeeze when you sneeze or cough.  
    - walk as much as you can. 
    - do the spirometer (breathing exercise) as much as possible.  
    - rest as much as you can.  

     Any other questions along the way please ask.  I’ll be rooting for you.  
  15. Like
    Curt got a reaction from BridgetO in Back on the Roller Coaster   
    @G.A.M. I hold surgery as treatment in high regard.  I had an upper right lobe lobectomy via video assisted thoracoscopic surgery (VATS) at the end of last February.  Recovery is different for everyone.  Here was my experience.  It was three incisions, one under my arm, one on my side and another on my upper abdomen.   After the surgery I had a drain tube in the incision on my side.  I had the surgery on a Tuesday night, was up and walking short distances Wednesday morning and released on Friday afternoon.  Requirements for release were that I was able to walk each day, my chest was clear of air pockets and the drain was removed.  I know others have been released with the tube (drain) in.  They will manage your pain really well while in the hospital.  Don’t be a hero, take the medicine.  I decided I was feeling so good that I could go a little longer with no pain meds.  I was very wrong.  Once I was home I slept a lot.  The first few days I had an arm chair next to my bed.  I would get up, eat, walk, sit there for a bit then go back to sleep.  I took pain medicine until Sunday and then moved to alternating Tylenol and Motrin.  The pain pills caused constipation and the gabapentin (nerve blocker) made my head feel like it was spinning.  I felt much better without both, you should take whatever you need to take for as long as you need to take it to make sure you aren’t in pain.  You should walk and do breathing treatments as much as possible.  Both are easier if you aren’t in pain.  By Monday I ventured to the coach and was able to stay up for longer periods of time but was still tired.  It took about ten days for me to venture out of the house for a haircut, two weeks for me to drive.  Three weeks before I went back to work.   I did not require any follow up treatment and have been NED since the surgery.  I have some numbness in the side where my surgery was performed and some pulling internally when I cough.   Neither are painful or disruptive.  Surgery isn’t fun but it is not as bad as I imagined it would be.  My breathing is back to pre surgery levels and I’m not limited in my daily activities.  Some tips:
    - the wedge pillow others have mentioned.
    - a small pillow to squeeze when you sneeze or cough.  
    - walk as much as you can. 
    - do the spirometer (breathing exercise) as much as possible.  
    - rest as much as you can.  

     Any other questions along the way please ask.  I’ll be rooting for you.  
  16. Like
    Curt reacted to BridgetO in Back on the Roller Coaster   
    Are you having a lobectomy by VATS (video assisted) or open surgery. I had a VATS lobectomy and was released from the hospital the day after, with a chest drain in place.  That was an unusually short hospital stay, most people are in for a couple of days at least. VATs surgery is not so bad, as surgeries go. You should be coherent for the Superbowl.  One recommendation: if you don't already have a wedge pillow (or an adjustable bed, I recommend you get one. Sleeping or resting with your upper body elevated, you'll  probably find it more comfortable and easier to breathe after surgery. Keep us informed about how your doing.. 
  17. Like
    Curt reacted to LouT in Back on the Roller Coaster   
    G.A.M.
    Curt and I both had lobectomies so I can tell you my experience.  In my case I had my surgery on May 2nd and went home on May 6th.  The most discomfort I had was from the chest tube they keep in you to prevent a collapsed lung.  Once that was out my pain was handled with a combo of Ibuprofen and Tylenol (which worked surprisingly well).  So, other than my first two days in the hospital I didn't require much in the way of opioids.  So, first answer;  You should be fine for Super Bowl.
    Once I got home I used a wedge pillow and it really helps you to stay clear and sleep better, I also used the Spirometer they gave me like crazy (builds the lungs up and keeps you clear), After the first week I started walking again, (starting at 2 miles/day and working up to 5 miles/day), and while I had some shortness of breath the first few days it went away quickly (mostly caused by tightness I felt) and by the end of 5 weeks I was back to 5 miles/day of walking without any need for supplemental O2.  
    My coaching to you is follow the instructions in the hospital...take your pain meds there (you'll need them and I had a hard lesson thinking I didn't need them) and then sleep comfortably and exercise to your comfort level.  You may also want to keep a small pillow at hand so that you can press it along your "surgical side" to soften the effect of coughing (which you'll do in the beginning).  Eat healthy and drink a lot of water and you should have a good recovery.
    Good luck to you and please update us post-surgery, when you can.
    Lou
  18. Like
    Curt got a reaction from LouT in Hello. I'm Cherilyn, wife of sclc survivor.   
    Hello @Cherilynn   I’m sorry to hear about your husbands diagnosis.  It’s normal to have a roller coaster or emotions.  It’s also incredibly healthy to “laugh and continue to make memories”.  You’ve found a group who are, or have, gone through the same thing as your husband.  There are also those going through what you are.  I went through it with my dad and now I am the patient.   Both are hard in their own ways.  Hang in there.   
  19. Like
    Curt got a reaction from LouT in Hello, my name is Freddy   
    The process of getting a definitive diagnosis is slow with lung cancer.   Are they doing any genetic testing?   Knowing if you have any specific mutations helps with deciding on targeted therapies most affective against those mutations.  There are lots of treatment options. Hang in there.   
  20. Like
    Curt reacted to Rose Kaiser in Hello. I'm Cherilyn, wife of sclc survivor.   
    I was the one diagnosed with stage 4 lung cancer a year ago. It took me a long time to realize just how much is has affected my husband. It is just as emotional for him, if not more, than it is for me. We both try to remain positive while we are on this journey. A support system is a must and Lungevity is a good one.  Hang in there!
  21. Like
    Curt got a reaction from hope16 in Back on the Roller Coaster   
    @G.A.M. I had an upper right lobe lobectomy a year ago.   I’ve been NED since with no follow up treatment.  I am a believer in surgery but understand that recover and lung function need to be considered on an individual basis.  I found this sturdy on SBRT published in 2016.  The conclusion was, “The results of the present trial show that SBRT pro- vides excellent LC and survival outcomes at 36 months with minimal lung toxicity. Importantly, SBRT had no significant impact on lung function at 36 months. These findings provide further support for the use of SBRT as a radical treatment for NSCLC, even in patients with poor pulmonary function before treatment.“. 
     
    Here is the full article 
     
  22. Like
    Curt got a reaction from LouT in Back on the Roller Coaster   
    @G.A.M. I had an upper right lobe lobectomy a year ago.   I’ve been NED since with no follow up treatment.  I am a believer in surgery but understand that recover and lung function need to be considered on an individual basis.  I found this sturdy on SBRT published in 2016.  The conclusion was, “The results of the present trial show that SBRT pro- vides excellent LC and survival outcomes at 36 months with minimal lung toxicity. Importantly, SBRT had no significant impact on lung function at 36 months. These findings provide further support for the use of SBRT as a radical treatment for NSCLC, even in patients with poor pulmonary function before treatment.“. 
     
    Here is the full article 
     
  23. Like
    Curt reacted to CoachGessica in Introducing Grahame Jelley- NACLC Adenocarcinoma Stage 3B   
    Thank you so much for your reply Curt. I'm incredibly grateful for the advice and you're 100% right with what you said. 
    Sorry to hear of your diagnosis but definitely grateful that they were able to find it at such an early stage. How is your treatment going?
     
  24. Like
    Curt got a reaction from Tom Galli in Introducing Grahame Jelley- NACLC Adenocarcinoma Stage 3B   
    Hello @CoachGessica    I’m sorry to hear about your fathers diagnosis.   My father was diagnosed at Stage 4 seven years ago.  Unfortunately the treatments available today were not available to him.   I was diagnosed at Stage 1 last year.  I’ve found that treatment options and prognosis are VERY different than they were even just seven years ago.  There is a ton of negative information on the internet.  Here’s what you should know.  1) much of it is dated.  2) Five year survival rates are rates for people diagnosed five years ago.  Many of today’s treatments weren’t available five years ago.  3) More cancer treatments have become available in the last three years than in the last fifty.   4) There is hope and affective treatment options.   
     
    Being supportive of your father will depend on him and what he needs.   It’s different for everyone.  One week into diagnosis is still incredibly traumatic for all.  The uncertainty and waiting is usually the hardest part.  As a treatment plan gets put in place things will level out.
    There are plenty of people here going through the same things as your dad and others going through the same as you.  We are here to help.  Hang in there.   
  25. Like
    Curt reacted to LUNGevityKristin in ILCSC Travel Funding Now Open   
    The travel grant application period for the 2020 International Lung Cancer Survivorship Conference is open now through March 1, 2020.
    Apply early; grants are limited and it is possible all funds may be distributed before the deadline. Travel grant recipients will be announced on a rolling basis by March 9.
    Full and partial travel grants are available to US patients/survivors who are first-time attendees and have a financial need. Full travel grants will cover round-trip US transportation and two nights of hotel accommodation to attend the 2020 International Lung Cancer Survivorship Conference. A limited number of full and partial travel grants will be awarded to international patients/survivors who are first-time attendees. That grant covers two nights of accommodation at the conference hotel, plus travel reimbursement up to $600USD. Travel receipts for all grant recipients must be provided for reimbursement no later than April 28, 2020.
    See full details on the application:  https://lungevity.org/for-patients-caregivers/support-services/survivorship-conferences/international-lung-cancer-8
×
×
  • Create New...