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Curt

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  1. Like
    Curt reacted to Tom Galli in Neuropathy due to cancer treatments   
    JSEIB,
    Welcome.
    Unfortunately, I also suffer chronic foot pains.  In my case, the cause is the drug Taxol and I had 18 infusions of the stuff. Doctors call my symptom a peripheral neuropathy but most lung cancer survivors call it “Taxol Toes”.  My foot pain is chronic at about a level 4 out of 10.  My toes burn, the joints in my toes hurt, and the edge of my heal hurts.  I’ve tried Gabapentin and Lyrica and these didn’t help at all. The anesthesiologists (pain management physician) I consult with told me injected nerve blocks will work, but the medication doesn’t last too long and the body gets accustomed to the medication. Moreover, there is a mandatory minimum period between injections.  I was told that the block works but after feeling no pain, resumption of pain as the medication wears off is very hard to deal with. So I’ve avoided pain blocks.  Here is what I do to deal with my pain.
    Protect the Toes
    Buy 1/2 to 1 size larger shoe than your normal foot size and buy a wide size. I use Samual Hubbard shoes.  They are expensive but worth it. Wear thick woolen socks. Wool is the best cushioning material there is. If you can’t tolerate 100% wool, then buy a wool blend but ensure the wool content is higher than 50%. Buy leather moccasins generously lined with wool. Buy them without a sole and wear them to bed to keep the covers from pressing down on your toes. These are bed shoes only and buy them oversized like your shoes. Treat the Pain
    My pain resolution strategy is to tolerate the pain through the day and address it at night so I can sleep. Get a script for Lidocaine Ointment USR, 5% and apply it liberally to your toes and other painful areas of your feet. This will only last about 30 minutes but sometimes that is enough to allow me to sleep. Buy flexible freeze packs with gel ace bandage these to your feet. I use this technique when my chronic pain level increases. It is uncomfortable for the first 10 minutes but then the cold produces a numbing effect that eliminates my pain. Fifteen to 20 minutes of icing produces numbness for about 30 minutes, again just enough for me to sleep, sometimes. Only get in bed when tired. Try and keep a regular sleep schedule. Minimize stress and anxiety because these spike my chronic pain. My doc prescribed Xanax and I take 0.5mg at bedtime if I’ve had a stressful day. But, one can grow dependent on Xanax so only use as needed. Sometimes I have bouts of muscle cramps that spike my chest chronic pain from 3 thoracic surgeries. When this occurs, my Taxol Toes feel much worse. Then I need narcotic medication. I have a script for Tramadol that I use about three times a month. I’m very reluctant to use it because of a fear of dependence and the undesirable side effect of constipation. No non prescription medication address my pain because it’s cause is damaged nerves. Even narcotic medication does not reduce the pain; it just makes it easier to tolerate. Standing and Walking
    Despite orthotic-like shoes, standing and walking long distance spikes my chronic foot pain.  So, try and avoid these activities but sometimes distance walking is necessary (like when on a touring vacation). I find I can walk about a mile without spiking my pain and if I rest, I can walk further.  Try and find your own limits. One thing that was hard for me was finding the patience to learn pain tolerance. If I give in to trying treatment during the day, I won’t be able to enjoy daytime activities. So, I’ve learned tolerance.  
    I hope these ideas help you.
    Stay the course.
    Tom
  2. Like
    Curt got a reaction from PaulaC in Prayers Answered   
    Surgery and recovery is different for everyone.  Are you having VATS surgery?  That recovery is easier.  I am 43, reasonably good health and had  VATS.  I had surgery on Tuesday night and went home on Friday.  I was supposed to go home one Thursday but had an air pocket in my chest they wanted to watch.  I was up and walking the morning after surgery.  They encourage you to get up and move.  The more you can the quicker you can have the drainage tube removed and the quicker you go home.  I stayed home for two weeks.  My first time out was to get a hair cut.  I returned to work for a few hours here and there after three weeks.  I returned in full after four weeks.  Six weeks out I was back to normal activity.  A few suggestions and notes.  
    1. It is not as bad as you are imagining.  I envisioned myself walking around frail and on oxygen.  There was no oxygen.  I was shocked how little my breathing changed.  Capacity was different but the act of breathing wasn’t.   I have three young boys that are 6, 8 and 10.  I beat them and their friends in dodge ball three weeks after surgery.  It was me against the block. 
    2. Walk and use the spirometer before surgery to build lung capacity.  Keep doing it after.  
    3. Hospitals are loud.  I found headphones really necessary to get any rest.  You will want rest. 
    4. I was tired.  More tired than I’ve ever been.  Did I mention I have three young boys?   In the weeks after surgery I would wake up, have breakfast, walk and take a nap.  I’d wake up, have lunch, walk, take a shower than nap.  Wake up, eat dinner, walk and go back to sleep.  The extreme tired lasted for about four weeks.  
    5. You’ll want a wedge pillow to sleep on when you get home.  Something firm that you can be propped up on.  
    6. I put an arm chair next to my bed.  It incentivized me to stay out of bed when I wasn’t napping but gave me a place to rest.  I did that for a week before I ventured on to the couch.  I needed to prop myself up when sitting on the couch.    
    7. Coughing and sneezing will hurt for a while.  I held a small pillow under my right arm  when I coughed or sneezed I would squeeze it.  I also found that carrying it would keep my arm from resting in my side incisions.  
    8. Don’t let the pain get ahead of you. I tried to be a hero while in the hospital and waited for my pain meds until I was in pain.  It was a mistake and getting the pain back under control required stronger meds.  The nurses were not happy.  Stick with the regiment they give you and let them know if it is wearing off.  
    9. The pain meds can cause constipation.  Drink lots of water and keep walking.  I as able to transition to just taking pain meds at night after a week and to Motrin after 10 days.
    10. I’ve mentioned the physical side.  I also need emotional support.  I was pretty sure I had cancer going in.  When I woke up and the doctor told me I did I was joking with him and my family about it.  The pain meds were doing their job.   I woke up later that night in a panic.  I knew I had cancer but didn’t have any of the details, I didn’t bother to ask or didn’t remember.  That made for a long night.  The emotions of it came in waves at first.   I wouldn’t think about it at all and then boom, it was like a weight was dropped on my head.  That gets better with time   This board helps.  I’m also looking for a local support group   
    I’m coming up on three months post op.  I’m coaching all three of my kids baseball teams, we had six games last weekend.  I run, throw and catch without issue.  I have a little lump/tickle in my throat that causes me to cough sometimes.  There is a little (I really don’t notice it unless I touch it) numbness on the side where my incisions were, when I cough it doesn’t hurt but my chest feels empty where they removed the lobe.  I’m told all of those things will go away with time.  None of it affects my daily life.   
    I was really worried going in.  It really was not as bad as I thought it would be   Hang in there.  You’ll get through it too.  You’ll have plenty of support here   
     
     
  3. Like
    Curt reacted to Road bum in 15,000th post and counting !!!   
    Katie, I want to thank you for beginning this forum. It has been a lifesaver for me.
    Every other forum I found, when I was diagnosed, was so negative that I almost stopped looking for one. 
    All the folks on here are so positive about things that I finally started looking at the whole situation a lot differently.
    My thanks to you and the other good folks on this forum. 
    Ron
  4. Like
    Curt reacted to Isabelle49 in Introduction - Isabelle49   
    Looking forward to meeting with the new doc and get everything straightened out. Thanks.
  5. Like
    Curt reacted to Rower Michelle in Scared of upcoming lung surgery, especially aftermath   
    Hey Irene-
    Wer’re hear for you when you’re able to update us.  Hope the procedure went well today.
    Michelle
  6. Like
    Curt reacted to Rower Michelle in Prayers Answered   
    Hi Brian-
    Its hard to believe in our little club the words tumor and good news can occur in the same sentence.  One step at a time, let’s do the happy dance for this milestone.  
    Keep us posted along the way!  Will keep the prayer warriors going! 
    Michelle
  7. Like
    Curt got a reaction from Tom Galli in Stage 1 Adenocarcinoma in Upper Right Lung   
    Banna.  I had an upper right lobe lobectomy a few months ago.  I am also currently NED. My first two scans are every three months, then six months for a few then a year.  At five years they will decide what to do after that.  I completely understand the feeling of just waiting for it to come back.  I looked into doing follow treatments to reduce the likelihood of recurrence.  I was told it wasn’t necessary.  I was also told that if you don’t have any recurrence in the first five years the likelihood of recurrence decreases.  
  8. Like
    Curt got a reaction from Tom Galli in Prayers Answered   
    Surgery and recovery is different for everyone.  Are you having VATS surgery?  That recovery is easier.  I am 43, reasonably good health and had  VATS.  I had surgery on Tuesday night and went home on Friday.  I was supposed to go home one Thursday but had an air pocket in my chest they wanted to watch.  I was up and walking the morning after surgery.  They encourage you to get up and move.  The more you can the quicker you can have the drainage tube removed and the quicker you go home.  I stayed home for two weeks.  My first time out was to get a hair cut.  I returned to work for a few hours here and there after three weeks.  I returned in full after four weeks.  Six weeks out I was back to normal activity.  A few suggestions and notes.  
    1. It is not as bad as you are imagining.  I envisioned myself walking around frail and on oxygen.  There was no oxygen.  I was shocked how little my breathing changed.  Capacity was different but the act of breathing wasn’t.   I have three young boys that are 6, 8 and 10.  I beat them and their friends in dodge ball three weeks after surgery.  It was me against the block. 
    2. Walk and use the spirometer before surgery to build lung capacity.  Keep doing it after.  
    3. Hospitals are loud.  I found headphones really necessary to get any rest.  You will want rest. 
    4. I was tired.  More tired than I’ve ever been.  Did I mention I have three young boys?   In the weeks after surgery I would wake up, have breakfast, walk and take a nap.  I’d wake up, have lunch, walk, take a shower than nap.  Wake up, eat dinner, walk and go back to sleep.  The extreme tired lasted for about four weeks.  
    5. You’ll want a wedge pillow to sleep on when you get home.  Something firm that you can be propped up on.  
    6. I put an arm chair next to my bed.  It incentivized me to stay out of bed when I wasn’t napping but gave me a place to rest.  I did that for a week before I ventured on to the couch.  I needed to prop myself up when sitting on the couch.    
    7. Coughing and sneezing will hurt for a while.  I held a small pillow under my right arm  when I coughed or sneezed I would squeeze it.  I also found that carrying it would keep my arm from resting in my side incisions.  
    8. Don’t let the pain get ahead of you. I tried to be a hero while in the hospital and waited for my pain meds until I was in pain.  It was a mistake and getting the pain back under control required stronger meds.  The nurses were not happy.  Stick with the regiment they give you and let them know if it is wearing off.  
    9. The pain meds can cause constipation.  Drink lots of water and keep walking.  I as able to transition to just taking pain meds at night after a week and to Motrin after 10 days.
    10. I’ve mentioned the physical side.  I also need emotional support.  I was pretty sure I had cancer going in.  When I woke up and the doctor told me I did I was joking with him and my family about it.  The pain meds were doing their job.   I woke up later that night in a panic.  I knew I had cancer but didn’t have any of the details, I didn’t bother to ask or didn’t remember.  That made for a long night.  The emotions of it came in waves at first.   I wouldn’t think about it at all and then boom, it was like a weight was dropped on my head.  That gets better with time   This board helps.  I’m also looking for a local support group   
    I’m coming up on three months post op.  I’m coaching all three of my kids baseball teams, we had six games last weekend.  I run, throw and catch without issue.  I have a little lump/tickle in my throat that causes me to cough sometimes.  There is a little (I really don’t notice it unless I touch it) numbness on the side where my incisions were, when I cough it doesn’t hurt but my chest feels empty where they removed the lobe.  I’m told all of those things will go away with time.  None of it affects my daily life.   
    I was really worried going in.  It really was not as bad as I thought it would be   Hang in there.  You’ll get through it too.  You’ll have plenty of support here   
     
     
  9. Like
    Curt got a reaction from Brian1969 in Prayers Answered   
    Surgery and recovery is different for everyone.  Are you having VATS surgery?  That recovery is easier.  I am 43, reasonably good health and had  VATS.  I had surgery on Tuesday night and went home on Friday.  I was supposed to go home one Thursday but had an air pocket in my chest they wanted to watch.  I was up and walking the morning after surgery.  They encourage you to get up and move.  The more you can the quicker you can have the drainage tube removed and the quicker you go home.  I stayed home for two weeks.  My first time out was to get a hair cut.  I returned to work for a few hours here and there after three weeks.  I returned in full after four weeks.  Six weeks out I was back to normal activity.  A few suggestions and notes.  
    1. It is not as bad as you are imagining.  I envisioned myself walking around frail and on oxygen.  There was no oxygen.  I was shocked how little my breathing changed.  Capacity was different but the act of breathing wasn’t.   I have three young boys that are 6, 8 and 10.  I beat them and their friends in dodge ball three weeks after surgery.  It was me against the block. 
    2. Walk and use the spirometer before surgery to build lung capacity.  Keep doing it after.  
    3. Hospitals are loud.  I found headphones really necessary to get any rest.  You will want rest. 
    4. I was tired.  More tired than I’ve ever been.  Did I mention I have three young boys?   In the weeks after surgery I would wake up, have breakfast, walk and take a nap.  I’d wake up, have lunch, walk, take a shower than nap.  Wake up, eat dinner, walk and go back to sleep.  The extreme tired lasted for about four weeks.  
    5. You’ll want a wedge pillow to sleep on when you get home.  Something firm that you can be propped up on.  
    6. I put an arm chair next to my bed.  It incentivized me to stay out of bed when I wasn’t napping but gave me a place to rest.  I did that for a week before I ventured on to the couch.  I needed to prop myself up when sitting on the couch.    
    7. Coughing and sneezing will hurt for a while.  I held a small pillow under my right arm  when I coughed or sneezed I would squeeze it.  I also found that carrying it would keep my arm from resting in my side incisions.  
    8. Don’t let the pain get ahead of you. I tried to be a hero while in the hospital and waited for my pain meds until I was in pain.  It was a mistake and getting the pain back under control required stronger meds.  The nurses were not happy.  Stick with the regiment they give you and let them know if it is wearing off.  
    9. The pain meds can cause constipation.  Drink lots of water and keep walking.  I as able to transition to just taking pain meds at night after a week and to Motrin after 10 days.
    10. I’ve mentioned the physical side.  I also need emotional support.  I was pretty sure I had cancer going in.  When I woke up and the doctor told me I did I was joking with him and my family about it.  The pain meds were doing their job.   I woke up later that night in a panic.  I knew I had cancer but didn’t have any of the details, I didn’t bother to ask or didn’t remember.  That made for a long night.  The emotions of it came in waves at first.   I wouldn’t think about it at all and then boom, it was like a weight was dropped on my head.  That gets better with time   This board helps.  I’m also looking for a local support group   
    I’m coming up on three months post op.  I’m coaching all three of my kids baseball teams, we had six games last weekend.  I run, throw and catch without issue.  I have a little lump/tickle in my throat that causes me to cough sometimes.  There is a little (I really don’t notice it unless I touch it) numbness on the side where my incisions were, when I cough it doesn’t hurt but my chest feels empty where they removed the lobe.  I’m told all of those things will go away with time.  None of it affects my daily life.   
    I was really worried going in.  It really was not as bad as I thought it would be   Hang in there.  You’ll get through it too.  You’ll have plenty of support here   
     
     
  10. Like
    Curt got a reaction from LouT in Prayers Answered   
    It’s a strange feeling to be relieved to get diagnosed but I know the feeling.  Living with knowing but not really knowing is stressful.  Having a clear path forward allows you to focus on that and worry less.  I had an upper right lobe lobectomy a few months ago.  If you have any questions or concerns fire away.  W
  11. Thanks
    Curt got a reaction from joiathome in Introduction - joiathome (jo) - my husband has stage iv nsclc adenocarcinoma   
    Hi Jo.  I’m sorry to hear about your husbands diagnosis.  My father had Stage IV lung cancer and I was recently diagnosed at Stage 1.  My dad liked fruit smoothies (we’d hide veggies and protein powder in them) while he was undergoing treatments.  Milk shakes also.  I hope his symptoms improve and you get some of of those bright days you are hoping for soon.  
  12. Like
    Curt reacted to LouT in Introduction - Isabelle49   
    Isabelle,
    I've been following this thread and am glad to hear that you have the appointment setup.  KatieB is absolutely correct that you never want the system to control your care or treatment.  I hope this Pulmonologist will be the right one for you.  For my part it was a pulmonologist that noticed my nodule on a CT Scan taken months before I saw him for something unrelated to cancer.  He was sharp and pushed everyone else in the "system" to get me treated and I'm so glad that I came across him.  I wish the same for you.

    Please keep us updated.  You'll be in our thoughts.
    Lou
  13. Like
    Curt reacted to Isabelle49 in Introduction - Isabelle49   
    Update: have an appointment with a new Pulmonologist on the 29th, so will go from there.
  14. Like
    Curt reacted to KatieB in Stage 1 Adenocarcinoma in Upper Right Lung   
    The uncertainty is definitely hard.  Being anxious is normal for sure. You can live in fear waiting for the shoe to drop (if it ever does), or you can run with this wonderful new start and LIVE life to the fullest.  Keep up with the scans.  Think of them like a colonoscopy or mammogram- something you just have to do.
    There are studies that show that once you've had any kind of cancer, your chance of developing a second cancer is still higher than the average person.  Eating clean and staying active is good for your overall health.  I would try to always stay away from carcinogens- those that you breathe/inhale and those that could get into your bloodstream through your skin. Being healthy also boosts your immune system.
    I'm so happy you found us.  We will be here for you!
     
  15. Like
    Curt reacted to Rower Michelle in 15,000th post and counting !!!   
    Wow Katie- YOU ROCK! 
  16. Like
    Curt reacted to Neverstopfighting in Trials Tak 788 for EGFR (BF has lung cancer stage 4)   
    Wow, 
    That last comment stopped this conversation right away.  I’m sorry for your loss LMS23. 
    The latest stats from my Onc at MSK is the median PFS for Tagrisso is 18.9 months. That is progression free survival and really the only number oncologists look at with medication.  Of course, side effects and complications occur with any drugs, especially one this powerful. I’m hopeful with the Tagrisso plus Vizimpro trial I am currently in.
    For me personally, I have hope that by the time my cancer cells start to resist my treatment, there will be another generation of EGFR mutation TKIs that will address the resistance.   
  17. Like
    Curt got a reaction from JenG in New to the Group   
    The Bonnie J Addario living room sessions are great.  I watch them live on YouTube.  Lots of info and hope.   
  18. Like
    Curt got a reaction from Irka in Scared of upcoming lung surgery, especially aftermath   
    You’ve got this Irka.  
  19. Like
    Curt reacted to Susan Cornett in Hello World (Dad diagnosed with stage IV nsclc adenocarcinoma)   
    Kwally,
    Sorry to hear about your dad's diagnosis but so glad that you found us. This forum has great information and so many wonderful contributors. Your attitude is great and your dad is fortunate to have a son so ready and willing to jump in. This disease is persistent and frustrating but it's just not the death sentence it once was. I was diagnosed with stage IV adenocarcinoma in 2016, and had recurrences in both 2017 and 2018. I celebrated my three year cancerversary in March. 
    I made a decision early on to live my life as though the cancer isn't there. I just keep making plans and doing what I want. There are slow days and down days but a good friend reminded me that forward is forward, no matter the speed. 
    Keep us posted and ask us anything. 
  20. Like
    Curt got a reaction from Susan Cornett in Pathology Reports Are In, Good News   
    That’s a great idea Lou.  Can I add a mile for each kid’s baseball game/practice I have to coach?  Three boys, 10 and under, three different teams.  Six games this weekend! 
  21. Like
    Curt reacted to Rower Michelle in Scared of upcoming lung surgery, especially aftermath   
    Thinking of you this week Irene!  Prayers for a speedy recovery!  Hang in there. Keep us posted. 
    Michelle
  22. Like
    Curt got a reaction from LouT in New to the Group   
    Hi Jenn.  Welcome.  I once took a course in college where the instructor described the required pace as “drinking from a firehose”.  That’s kind of how it feels to me trying to keep up with all info regarding lung cancer.  I use Google Alerts and Google has something called scholar alerts.  I’ve found those and this board to be the most informative.  Be sure to take a break from the information firehose to breath and take in life.  
  23. Like
    Curt got a reaction from Roz in Hello World (Dad diagnosed with stage IV nsclc adenocarcinoma)   
    Hello @Kwally3.  I’m sorry to hear about your dad’s diagnosis.  Cancer is a roller coaster.  It’s important to know that there will be plenty of downs but as your dad settles into a treatment plan there can be lots of ups as well.  Be sure to enjoy those tot he fullest.  It will help get you and your dad through the tougher times.   My dad was diagnosed years ago at Stage IV.  Unfortunately today’s treatment options were not available to him.  I am a never smoker and was diagnosed a few months ago and was really surprised to see how  treatment options have changed for the better.  It was disappointing when thinking about my dad, but encouraging when thinking about myself.  It’s good he had comprehensive genomic testing..  It’s pretty standard protocol now but I’m often surprised that all places don’t do it as standard practice.  Knowing the specific genetic make up of the tumor and whether or not there are any genetic mutations can help in creating an affective treatment plan.   
    Hang in there   You and your dad aren’t alone in this.  
     
  24. Like
    Curt reacted to BridgetO in Hello World (Dad diagnosed with stage IV nsclc adenocarcinoma)   
    Hi and welcome. I'm sorry, too, about your dad's diagnosis. I never smoked and I was diagnosed with adenocarcinoma. Fortunately, mine was discovered early on a CT scan for something else, so surgery and ongoing surveillance was all I needed. Curt is right that the advances in lung cancer treatment in the last few years are amazing and a lot of people with advanced cancer are living long and well. I'm sure  you'll be hearing from some of them on these forums.Let us know what questions you have and how we can support you. Your dad is lucky to have you as his supporter and advocate.
    Bridget O
  25. Thanks
    Curt reacted to Tomm in Thyroid dysfunctions secondary to cancer immunotherapy   
    Thyroid dysfunctions secondary to cancer immunotherapy   
    ...this is something we need to get checked.. this is a link to a govt. study
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953760/
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