43% through Radiation - Video

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Husker Fan
Husker Fan Member Posts: 65
edited October 2011 in Head and Neck Cancer #1
I have completed 13 of 30 radiation treatments and thought that those that will be having radiation in the future would like to see a vidoe of what it is all about. It's more boring than anything, but not knowing gave me a lot more anxiety than knowing. Everyone on this discussion board is incredible, helping me, and others, with the information, help and support. I am somewhat a newbie, but am now living it, so I thought I would help by showing a video of my radiation treatment.

A little history; July 8th I was getting my yearly physical, my doctor was checking my neck and that is when it all started, well when I found out! After multiple scans, biopsies and other test, I had a Trans Oral Robotic Surgery (TORS) for the cancer in my throat on August 10th. August 29th I had a neck dissection. September 28th I started 30 treatments of radiation to my neck. Fortunately things have been going good, but I have a feeling things are about to change!

Prayers for everyone on here...

David


Here is my radiation video: http://www.youtube.com/watch?v=_kucKeYSoXs

Here is a video about the TORS (not me): http://www.youtube.com/watch?v=HSpiawRvd-E


You will have to cut and paste the links until I figure out, or someone tells me how to do it correctly...
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Comments

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #2
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    Will Help
    This will help so many who are just being told they will have to do radiation. The thought of the unknown of what happens is hard to deal with. Thanks for sharing.

    May i have permission to share with others not on CSN?

    Are you doing chemo?

    Prayers for you that your treatments continue to be bearable.

    John
  • Husker Fan
    Husker Fan Member Posts: 65
    #3
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    fisrpotpe said:

    Will Help
    This will help so many who are just being told they will have to do radiation. The thought of the unknown of what happens is hard to deal with. Thanks for sharing.

    May i have permission to share with others not on CSN?

    Are you doing chemo?

    Prayers for you that your treatments continue to be bearable.

    John

    Share to educate...
    Share as you need to help others understand the process. No chemo here. From everything I read, I am glad I don't have to have chemo on top of everything else!

    Is your tattoo real in your photo? Is it a cancer ribbon? Is it especially for head and neck cancer?

    Prayers to you too John,

    David
  • Puggle
    Puggle Member Posts: 88 Member
    #4
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    Thanks for sharing...
    My husband is done with his radiation but I wish we both would have been able to see something like this prior to the treatments. Even when he went to get his initial PET scan and they placed the mask on him he freaked a bit but seeing this would have probably made it a bit easier.

    Wondering if the link to the video should be something added to the superthread?

    Hope the rest of your treatments go smoothly!
  • donnahamblin
    donnahamblin Member Posts: 47
    #5
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    Many Thanks!
    Thank you so much David for sharing. My husband will start his treatments in the next couple of weeks so I will show him this. I think it will help him a lot. Prayers to you as well:-)

    Donna
  • Husker Fan
    Husker Fan Member Posts: 65
    #6
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    Puggle said:

    Thanks for sharing...
    My husband is done with his radiation but I wish we both would have been able to see something like this prior to the treatments. Even when he went to get his initial PET scan and they placed the mask on him he freaked a bit but seeing this would have probably made it a bit easier.

    Wondering if the link to the video should be something added to the superthread?

    Hope the rest of your treatments go smoothly!

    Mask and Freaking
    Speaking of freaking, a few days ago after my treatment, the mask got stuck. LOL. It was a couple of the snaps and it was for only about 10 seconds. The technicians worried more about it then I did. The next day though I told the technicians I would bring a crow bar in, in case it happened again. LOL.

    This is very serious that we are all going through, but I think we all have to find the humor to stay sane!
  • Husker Fan
    Husker Fan Member Posts: 65
    #7
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    donnahamblin said:

    Many Thanks!
    Thank you so much David for sharing. My husband will start his treatments in the next couple of weeks so I will show him this. I think it will help him a lot. Prayers to you as well:-)

    Donna

    Glad to help
    Donna,

    If you or your husband have any questions, please do not hesitate to ask me or anyone else on this discussion board, everyone is very helpful.

    David
  • donnahamblin
    donnahamblin Member Posts: 47
    #8
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    Husker Fan said:

    Glad to help
    Donna,

    If you or your husband have any questions, please do not hesitate to ask me or anyone else on this discussion board, everyone is very helpful.

    David

    Will do David:-) Again, many
    Will do David:-) Again, many thanks!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
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    Puggle said:

    Thanks for sharing...
    My husband is done with his radiation but I wish we both would have been able to see something like this prior to the treatments. Even when he went to get his initial PET scan and they placed the mask on him he freaked a bit but seeing this would have probably made it a bit easier.

    Wondering if the link to the video should be something added to the superthread?

    Hope the rest of your treatments go smoothly!

    Superthread
    I cannot get them to open and play on my iPhone? What are they? Just videos of the actual radiation and actual surgery? Not sure I would want to see actual surgery, though. If it's something that you guys think should go in the superthread, I would put it in the contribution from other members section. I just need to know what I'd be putting there. :)
  • jtl
    jtl Member Posts: 456
    #10
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    Video
    Interesting video but my machine and mask look a lot different. Has anyone used TomoTherapy? I still have 3 weeks left and I don't have any basis of comparison but so far I can still swallow with minimal pain and a small dose of pain killer although nothing tastes good so I have to force myself to eat. Ensure is my friend.

    http://www.youtube.com/watch?v=m46t834g_90

    Best to all of you.
    John
  • Puggle
    Puggle Member Posts: 88 Member
    #11
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    sweetblood22 said:

    Superthread
    I cannot get them to open and play on my iPhone? What are they? Just videos of the actual radiation and actual surgery? Not sure I would want to see actual surgery, though. If it's something that you guys think should go in the superthread, I would put it in the contribution from other members section. I just need to know what I'd be putting there. :)

    Hi Sweetblood
    Thanks again for all your work on the superthread. These are both youtube videos. The first is showing Husker's radiation treatment. I would defer to him if he would want it added to the superthread. It shows the whole process and would be great for someone new to understand what they would have to go through. The 2nd is showing TORS surgery and yes, it does show some of the surgery and that's when I stopped watching! (I could never have been a doctor!)
  • osmotar
    osmotar Member Posts: 1,006
    #12
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    WOW
    Thank you , thank you for sharing this video, it's bookmarked to show my family, I've been concerned about this portion of my treatment. My first consult with the radiologist is this coming tues, I just finished my 3rd all day chemo treatment this past monday. I have a list of questions to take with me tues, but have to ask, now that you have started and are going thru radiation; is there anything you can now think of that you would/should have asked before starting treatment? Thank you for any input you can provide.

    Linda
  • Husker Fan
    Husker Fan Member Posts: 65
    #13
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    sweetblood22 said:

    Superthread
    I cannot get them to open and play on my iPhone? What are they? Just videos of the actual radiation and actual surgery? Not sure I would want to see actual surgery, though. If it's something that you guys think should go in the superthread, I would put it in the contribution from other members section. I just need to know what I'd be putting there. :)

    Videos
    Hi Sweetblood,

    The Radiation video is an edited (shortened) video of my radiation treatment I posted it for those who haven't had radiation yet and have a little anxiety of what it is all about. It is meant to reduce or get rid of the anxiety.

    The TORS video is a video produced by University of Nebraska Medical Center. It shows a little of the surgery, but mostly explains the procedure. I found it interesting and "good to know" before surgery, but some people may feel "less is more" when it comes to knowledge about the surgery.

    If you wish to put the radiation video on the super thread, that is fine with me.

    Thank you for all of your time and commitment to help others on this discussion board, I know your information has really helped me!

    Have a great evening,

    David
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #14
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    Husker Fan said:

    Videos
    Hi Sweetblood,

    The Radiation video is an edited (shortened) video of my radiation treatment I posted it for those who haven't had radiation yet and have a little anxiety of what it is all about. It is meant to reduce or get rid of the anxiety.

    The TORS video is a video produced by University of Nebraska Medical Center. It shows a little of the surgery, but mostly explains the procedure. I found it interesting and "good to know" before surgery, but some people may feel "less is more" when it comes to knowledge about the surgery.

    If you wish to put the radiation video on the super thread, that is fine with me.

    Thank you for all of your time and commitment to help others on this discussion board, I know your information has really helped me!

    Have a great evening,

    David

    Ok, I saved those two things
    Ok, I saved those two things in my notes section for the next time I do an update.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
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    Hi David
    Great Video but brings back some very bad memories of being treated for me. Also don’t’ let worry get to you we have no control of the future just let the Man up above have control of the steering wheel of your life.

    Thanks for sharing the Video I am thinking of sending it to my Boss at work
    Hondo
  • Husker Fan
    Husker Fan Member Posts: 65
    #16
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    osmotar said:

    WOW
    Thank you , thank you for sharing this video, it's bookmarked to show my family, I've been concerned about this portion of my treatment. My first consult with the radiologist is this coming tues, I just finished my 3rd all day chemo treatment this past monday. I have a list of questions to take with me tues, but have to ask, now that you have started and are going thru radiation; is there anything you can now think of that you would/should have asked before starting treatment? Thank you for any input you can provide.

    Linda

    Radiation Questions...


    Linda,

    A lot of the questions I had came from this discussion board. A few I had were:

    1. What to do for the dry mouth, rinse, sprays, meds, ect.,... ?
    2. Should I get a Flu Shot?
    3. How much Tylenol can I take a day (until I HAVE to take pain killers)?
    4. Will it affect my immune system? (Hanging around my grand-daughters and the germs that go with that). His answer was no since I am not doing Chemo, but it will make me fatigue which can let down the immune system... so kind of yes.. LOL.
    5. What about some type of med to numb the throat just before eating, to allow for swallowing... like Lidocaine Viscous?

    If you haven't, you will want to get with your dentist or go to a dentist that specializes in cancer and radiation of the head and neck. You will also wasn’t to get with a dietician/nutritionist. The dentist will make fluoride trays for you to use each night for flouriding your teeth to help save them.

    I will add you to my prayers, don't hesitate to ask questions on here, this is a great bunch of people on here.

    David
  • Husker Fan
    Husker Fan Member Posts: 65
    #17
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    Hondo said:

    Hi David
    Great Video but brings back some very bad memories of being treated for me. Also don’t’ let worry get to you we have no control of the future just let the Man up above have control of the steering wheel of your life.

    Thanks for sharing the Video I am thinking of sending it to my Boss at work
    Hondo

    Sorry
    Sorry for stirring up bad memories, but hope it helps others and their anxiety.

    David
  • RogerRN43
    RogerRN43 Member Posts: 185
    #18
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    Best wishes :-)
    The type of your treatment protocol has a very high cure rate, you might already know that.
    And the speed at which it is being expedited is a bonus.

    My timeline is similar (found my lump in July) except I didn't have the option of TORS and wasn't offered a pre-neck dissection, I had a tonsillectomy and will be staring chemo+rad on Wed. I read an MD Anderson study that followed 120 Stage3&4 patients who had a tonsillectomy to remove the primary, then rad, also had great outcomes, I hope I'm one of them.

    I don't have any doubts for you, you are on your way!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #19
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    Husker Fan said:

    Sorry
    Sorry for stirring up bad memories, but hope it helps others and their anxiety.

    David

    Hi David

    No problem about memories it was all part of my life and still is, I will be sending the Video to my boss today just so they can get a first hand look at what we go through.

    God Bless and keep you in his care
    Hondo
  • jim and i
    jim and i Member Posts: 1,788 Member
    #20
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    Can't open
    David,

    I have tried to open this video (I really want to see what my husband experienced) but since I am a computer handicaped user I can't figure out how to cut and paste it. I tried typing it exact and that didn't work. Could you or one of the computer genius' out there help with thi? Skiffin? I tried to use edit to copy and paste but when I try to paste in bar it does nothing.

    Thanks for the help.
    Debbie
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #21
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    jim and i said:

    Can't open
    David,

    I have tried to open this video (I really want to see what my husband experienced) but since I am a computer handicaped user I can't figure out how to cut and paste it. I tried typing it exact and that didn't work. Could you or one of the computer genius' out there help with thi? Skiffin? I tried to use edit to copy and paste but when I try to paste in bar it does nothing.

    Thanks for the help.
    Debbie

    Links for Debbie
    I will try and do the links for you, but I just remembered that I have never been able to successfully link to YouTube on this site. I don't know if that is because of my iPhone or what. It just throws me out to the expressions pages. So maybe if mine do not work, John can do them. Here goes nothing.

    RADIATION VIDEO

    TORS VIDEO


    Edit: OK. Looks like they work. I think because i didn't get the site from the browser on my phone. I think my phone messes it up because it tries to go to the mobile site or something.

    I did watch the radiation one. (I'm not watching any surgery. :p ) I have to say that it did make me feel a bit queasy to watch it. I think my mind will always associate that mask with nausea and the worst pain I've ever had in my life, with how bad my mouth and throat got.

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