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  1. #1
    RoadBikeReview Member
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    Smile My journey with sarcoma- light at the end of the tunnel!

    Great news!
    To recap-
    Diagnosed with soft tissue sarcoma, upper thigh/hamstring, 6/2011
    6 rounds of chemo
    Surgery to remove 10cm tumor, 12/2011
    30 radiation treatments, ending 3/14/12
    Discovery of metastatic disease in lung, 9/2012
    6 rounds of chemo starting 11/2012, ending yesterday!!!!

    We met with my oncologist yesterday to go over the last set CT scans of my lung. We have made such great progress in fighting this disease that she is taking me off chemo and moving me to monitoring. next scans in 8 weeks. I am not cured, I still have a small nodule of cancer in my left lung, but it is small, 4mm, and stable.

    When I was diagnosed, the largest nodule (nice way of saying cancerous tumor in lung) was 1.6cm and growing quickly. When we talked about my options and settled on type of chemo (new drug, not approved by FDA yet, but my best hope), my wife asked for the timeline, thinking she would get the timeline for getting started on treatment. My onc responded to me, "For a case like this, you're looing at 12-18 months, but you're young (56 is young I guess) and healthy, so survival will likely be longer". I've never really felt like spoken words have delivered a gut punch to me until I heard that. Wow. She then said that the drug is effective in controlling the cancer in 25-40% of the patients, very good results, and acutally causes tumors to decrease in size in 7-10% of patients. Of course we were gunning to be in the 7% club from the start, but could tell my onc thought that just controlling it would be great results.

    On each scan, we could seen the nodule getting smaller. On the first scan, we could see it had shrunk from 1.6cm to 0.6cm. My onc almost started to cry when I said that meant I was in the 7% club, and then said, "I don't get to give this kind of news very often." I am truly blessed.

    Now comes the long journey to build my body back up. The chemo has really taken its toll on me. My hematocrit has been <30% for 3 months. Riding flat 20 miles at 14mph is a struggle. Even a freeway overpass is like a mountain to me. It will take at least 4-6 months to get my red blood back to normal, but I've proven myself as a dedicated fighter and will continue to do so.

  2. #2
    RoadBikeReview Member
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    That is awesomeness wrapped in bacon and dipped in chocolate. Thanks for sharing that, and best wishes for continued good luck.

  3. #3
    half-fast
    Reputation: 10ae1203's Avatar
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    That's pretty outstanding. You had a tough road for a while.

  4. #4
    Non non normal
    Reputation: bigrider's Avatar
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    I am so happy for you and your family. Coming from a family that has been filled with cancer, I love to celebrate the victory of someone getting to extend their gift, of life on this earth.
    "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." --A. Einstein

  5. #5
    Go Blue
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    That is great news. Fight on.
    I try to be perfectly civil, until someone really pisses me off.

  6. #6
    Maximum Gluteus
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    That is FANTASTIC news! Sounds like your dues for entry into the "7% Club" have been paid in full. Here's wishing you tailwinds and smooth roads....
    Yet another cycling blog...updated whenever.
    http://teamlardbutt.wordpress.com

    We inched our way up the mountain, kilometer markers passing like kidney stones.

  7. #7
    Frog Whisperer
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    Thanks for being one of the 7%......and thanks for sharing it with us! We like good news!
    Of course I'm sure...that doesn't mean I'm right......

  8. #8
    RoadBikeReview Member
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    Awesome news! May your recovery go well! My wife and I are also cancer survivors; always great to hear about someone fighting the fight and beating the odds!

  9. #9
    haole from the mainland
    Reputation: jorgy's Avatar
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    Great news!

    Are they gonna go in and get that lung nodule?

  10. #10
    Misfit Toy
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    Seven percent, a most excellent number!!!
    It's all fun and games until someone ends up in a cone.

    Don't make me go all honey badger on your ass

  11. #11
    Windrider (Stubborn)
    Reputation: Len J's Avatar
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    My journey with sarcoma- light at the end of the tunnel!

    Made my day.

    Congratulations.

    Len



    "Evil....is the complete lack of Empathy!"

    ""We are what we repeatedly do. Excellence, then, is not an act but a habit. " Aristotle

    No one is as bad as the worst thing they have done & no one is as good as the best thing they have done.........think of that when you feel like you understand someone.

  12. #12
    Low rep power
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    Absolutely the best thing I've heard all day!
    We'll be back soon, there will be more of us, and next time we won't be dropping leaflets.

    “The problem with quotes on the internet is that it’s hard to verify their authenticity” – Abraham Lincoln

  13. #13
    Too slow to be smart
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    How many times have you finished in the top 7 of a race this important? Congrats and I hope to hear more good news!!
    ”Nothing sucks more than that moment during an argument when you realize you’re wrong” - Unknown

  14. #14
    Travels by Map
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    Congratulations and I hope things keep going well.

  15. #15
    RoadBikeReview Member
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    Absolutely wonderful news! I hope you continue to get good news.
    While we are free to choose our actions, we are not free to choose the consequences of our actions. - Stephen R. Covey.

  16. #16
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    Quote Originally Posted by jorgy View Post
    Are they gonna go in and get that lung nodule?
    It seems like it would simple to get, but it's not. It's only 4mm, which is pretty small, doesn't have a flag on it saying, "Here I am," and will be a little difficult to find. My surgeon would rather not go into my lung for anything smaller 5mm and even that is pushing it. When it was larger, it would have been relatively easy to get at, since it was 4x the size, but the disease was considered out of control at the time and the fear was that if they went in to get it there was no way of knowing that more wouldn't pop up right after that. Since the disease is under control now and the nodule has been the same size for 6+ weeks, we will play wait and see. If it starts to grow and no other nodules start to grow, we will go in with either VATS (video assisted thoracic surgery) to remove it, or cryoablation where they go in and freeze it, along with other lung tissue, to kill it. Either way, operating on a lung is a delicate situation and not to be taken lightly. If it starts to grow and other nodules appear (or the ones that we seemed to kill off reappear), it will likely be back to chemo,
    I had VATS last fall for spontaneous pneumothorax, and while it is much easier on the body than opening up the chest, it's still a serious operation.
    Time will tell how things proceed. I have great faith and inner strength, much more so than I ever believed I had, so I can learn how to live with cancer.

  17. #17
    Maximum Gluteus
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    The advances in medical science in this area amaze me. My Dad was a lung cancer (and breast cancer) survivor back in the 1980's. With the lung cancer they just launched in and took out the affected lobe. It was a small nodule the size of a pencil eraser - about 10mm.

    It sounds like you are getting excellent care.
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    Yet another cycling blog...updated whenever.
    http://teamlardbutt.wordpress.com

    We inched our way up the mountain, kilometer markers passing like kidney stones.

  18. #18
    waterproof*
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    Thanks for the good news man! Positive energy is flowing your way!
    * not actually a Rock Star

  19. #19
    corning my own beef
    Reputation: JustTooBig's Avatar
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    fantastic news! glad for a positive update.
    ----------------------------------------------------------------------------------------------------------------------

    People who say, "Laughter is the best medicine.." have never been on the receiving end of a morphine drip..

    ноожеяз ай вщоw?
    -VaughnA


    A fool and his money were damned lucky to have bumped into each other in the first place.

  20. #20
    RoadBikeReview Member
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    finally...some good news...

    I often work with some head and neck cancer MD's.....and sadly they have been way too busy the past few months. Just had a family member with a small skin cancer scare as well...

    keep fighting man, you're doing great.
    Not banned yet.

  21. #21
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    Great new, keep up your spirit and efforts.

  22. #22
    Travels by Map
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    Quote Originally Posted by tazdag View Post
    It seems like it would simple to get, but it's not. It's only 4mm, which is pretty small, doesn't have a flag on it saying, "Here I am," and will be a little difficult to find. My surgeon would rather not go into my lung for anything smaller 5mm and even that is pushing it. When it was larger, it would have been relatively easy to get at, since it was 4x the size, but the disease was considered out of control at the time and the fear was that if they went in to get it there was no way of knowing that more wouldn't pop up right after that. Since the disease is under control now and the nodule has been the same size for 6+ weeks, we will play wait and see. If it starts to grow and no other nodules start to grow, we will go in with either VATS (video assisted thoracic surgery) to remove it, or cryoablation where they go in and freeze it, along with other lung tissue, to kill it. Either way, operating on a lung is a delicate situation and not to be taken lightly. If it starts to grow and other nodules appear (or the ones that we seemed to kill off reappear), it will likely be back to chemo,
    I had VATS last fall for spontaneous pneumothorax, and while it is much easier on the body than opening up the chest, it's still a serious operation.
    Time will tell how things proceed. I have great faith and inner strength, much more so than I ever believed I had, so I can learn how to live with cancer.
    No joke. I hope you don't have to have another VATS, but at the same time it is definitely a relief to live in a time where they aren't necessarily forced to literally crack you open.

  23. #23
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    Quote Originally Posted by nate View Post
    No joke. I hope you don't have to have another VATS, but at the same time it is definitely a relief to live in a time where they aren't necessarily forced to literally crack you open.
    How are you healing up Nate? Still have that weird numb tightness across the ribs? I do... If I am particularly annoying, my wife will fake that she is about to poke me in the ribs. I get in line in a big hurry.

  24. #24
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    Awesome stuff, Taz! Glad to hear you are on a good path in fighting your disease.

    How come it will take so long for your hematocrit to come back up? I would have thought maybe 1-2 months. I know aerobic exercise can expedite RBC production, so would bike riding help that timetable?

  25. #25
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    Quote Originally Posted by Wetworks View Post
    How come it will take so long for your hematocrit to come back up? I would have thought maybe 1-2 months. I know aerobic exercise can expedite RBC production, so would bike riding help that timetable?
    Becuase of the chemotherapy, I don't have normally functioning bone marrow at this point. It will take a while for it to start producing RBC at normal rate. RBC have a longer cell life than WBC or platelets, so their production is normally the slowest of the blood components. Yes, exercise and proper diet will help, but it still takes a while.

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