Update on my Husband Bob

kimmygarland
kimmygarland Member Posts: 312
in Head and Neck Cancer #1
Hello to all... wanted to give an update on my husband. Some of you may recall that he is in his third battle with the beast since mid 2009. He had rads and chemo in 2009, surgery with wrist flap in 2010, and on March 5, had another surgery with pectoral flap used. They were unable to get clean margins; therefore, chemo and rads will be coming soon. Appt with rad onco is 4/11 and we expect it will all start the next week, which will be right on target for 6 weeks following surgery and I understand that is the standard at our hospital.

My husband got a trach during surgery and ent wants him to keep it through rads, just in case needed for swelling. Apparently the pec flap is a bit bulkier than the old flap and he says - better safe than sorry. We agree.

All that said, last Tuesday night Bob comes walking into the living room with blood pouring out of his trach/stoma area. OMG it was scary. We loaded up and went to ER, which was a very short drive away. Over the next few hours the blood loss greatly slowed down and his ENT said - bring him here, to his hospital, which is across town. So he was loaded up and taken by ambulance late Tuesday night/early Wed morning to the big hospital where his ENT Oncologist is. They gave him a CT scan and saw nothing wrong.

Turns out this can be a 'complication' of the trach.... somehow a blood vessel got bumped or something and burst, causing the bleeding. Although there was much concern at the first hospital, our ENT Onc wasn't overly excited about it and said it is just a freak thing that can happen. He said very scary with all that blood, but (in his words), it's only blood and as long as it stops it's ok. OMG... easy for him to say!

We've since had a follow up appointment and he's doing fine.

I am very concerned, frankly, as I know what the chemo and rads is going to do to him. He has no weight to lose (6'1 and 180 lbs/he has a peg tube), is still weak from the surgery, already has reduced kidney function and the list goes on. But Bob says, what choice do we have?! He's right and we will get through it. All I can pray for is lots of good drugs and that IT WORKS!!!

I have no idea if being radiated a second time makes the side affects worse? Will ask the rad onco next week. I also am worried about him laying flat with the trach - it is virtually impossible for him to lay flat. Ugh... all these things going through my head and I know they must be going through his and much more. I feel so helpless. Trying to take it one day at a time.

Please say a prayer for us. Also thinking about all the other warriors out there fighting - hang in there.

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Thoughts and Prayers
    Coming your way, and with an extra dose....

    Best,
    John
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #3
    Skiffin16 said:

    Thoughts and Prayers
    Coming your way, and with an extra dose....

    Best,
    John

    Joining In
    Same as John, special prayer request heading your way. Sorry you have to relive this terrible demon.

    Tommy
  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Prayers and positive thoughts....
    coming to you both from me.

    p
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #5
    PRAYERS AND POSITIVE MOJO.....
    .... IS HEADED YOUR WAY. YOUR HUBBY IS A TOUGH MAN AS WELL ARE YOU. HANG IN THERE. HE HAS BEATEN THIS TWICE BEFORE, HE WILL DO IT A THIRD TIME.

    BEST!!

    MIKE
  • osmotar
    osmotar Member Posts: 1,006
    #6
    Blessings
    and prayers headed your way.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    I think I've told you before
    that my history and your husband's are almost the same. I've had radiation twice, and I've had radical resection and flap-graft surgery. I'm about 5 weeks out from my second rads now. Doing pretty well, too. If the day ever comes when i can eat regular food again, that will be an extra bonus:)

    There just aren't any choices, Kimmy G. We just do what we have to, and see how it turns out. I remember at one point saying to my wife, "the bad part about this is that with all that the treatment puts us through, it still could fail." Heck, I acknowledge I'm in that boat, and will be for the rest of my life.

    The bleeding episode is a fluke. Even at its worst, if it requires surgical intervention, that intervention will be pretty easy to accomplish. I wish you guys the best. Second radiation isn't easy, but it is still doable.

    best to you.

    Pat
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #8
    good to see your post, kimmy
    Prayers being lifted and thoughts centering around a positive outcome.

    Be sure to keep us posted.

    Hugs.
  • kimmygarland
    kimmygarland Member Posts: 312
    #9
    Noellesmom said:

    good to see your post, kimmy
    Prayers being lifted and thoughts centering around a positive outcome.

    Be sure to keep us posted.

    Hugs.

    Thanks
    to all for the prayers and encouragement. We really appreciate it, and need it right now.

    Pat - yes, I believe you and my husband have travelled similar paths. I am encouraged by your posts that you are recovering from treatment and noticed in another thread you are walking every day.

    I will keep everyone posted as we move along thru the process.
  • Sue22
    Sue22 Member Posts: 99
    #10
    kimmygarland said:

    Thanks
    to all for the prayers and encouragement. We really appreciate it, and need it right now.

    Pat - yes, I believe you and my husband have travelled similar paths. I am encouraged by your posts that you are recovering from treatment and noticed in another thread you are walking every day.

    I will keep everyone posted as we move along thru the process.

    New
    Hang in there. Positive thoughts your way. Sue
  • wifeforlife
    wifeforlife Member Posts: 189
    #11
    Sue22 said:

    New
    Hang in there. Positive thoughts your way. Sue

    Kimmy and Pat
    Praying for both of you!
    Wife
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #12
    wifeforlife said:

    Kimmy and Pat
    Praying for both of you!
    Wife

    Prayers.
    KEEP CALM AND CARRY ON.
    Thoughts and prayers for you both are heading your way.

    God bless,
    Tonsil Dad.

    Dan.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #13
    longtermsurvivor said:

    I think I've told you before
    that my history and your husband's are almost the same. I've had radiation twice, and I've had radical resection and flap-graft surgery. I'm about 5 weeks out from my second rads now. Doing pretty well, too. If the day ever comes when i can eat regular food again, that will be an extra bonus:)

    There just aren't any choices, Kimmy G. We just do what we have to, and see how it turns out. I remember at one point saying to my wife, "the bad part about this is that with all that the treatment puts us through, it still could fail." Heck, I acknowledge I'm in that boat, and will be for the rest of my life.

    The bleeding episode is a fluke. Even at its worst, if it requires surgical intervention, that intervention will be pretty easy to accomplish. I wish you guys the best. Second radiation isn't easy, but it is still doable.

    best to you.

    Pat

    Pat
    i have been told by 5-6 doctors that i can have no more radiation. can you share why some can have it twice.

    thanks
    john
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #14
    Big
    big shout of prayers going for you, Bob and the doctor's.

    john
  • sue5749
    sue5749 Member Posts: 170
    #15
    same here
    Hi, So very sorry for everything that you are going through. My husband had the very same thing happen to him with his trach. He woke me up very early one morning with blood flowing out of his track. It was all over the bathroom mirror and floor. I jumped out of bed and drove him to the er. They did the e-rays and could not find anything So just sent him home. It did stop, but scared me to death! This is just one of many scares that we have had! He suffered with his cancer for 15 months. He is no longer with me, not longer suffering. I miss him something awful! I am not the same person I once was, don't think I ever will be. I will say a prayer for you both! I know how much you both are suffering something awful! Wish I could give you some kind of advice, just take ALOT of deep breaths! Hang in there! Sue
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #16
    fisrpotpe said:

    Pat
    i have been told by 5-6 doctors that i can have no more radiation. can you share why some can have it twice.

    thanks
    john

    Have any of them said why?
    General rules are that you cannot be reirradiated within two years. Other than that, with IMRT you really can be irradiated twice. The dose is fractionated such that it spares overexposure to key structures, like spine and carotid arteries, thereby avoiding catastrophic compications. In my case, I can tell they came in with some pretty crazy angles to do my rads this second time. For instance, I'm not growing my sideburn back on the opposite side. And I can see where they really pumped in the rads this time, over the angle of my jaw on the side with the cancer. I would say the only doctor who could definitively say you cannot be radiated a second time would be the radiation oncologist who did your original dosimetry, or someone equally quallified who has reviewed the actual treatment plan.

    Don't know if this helps.

    Pat
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #17
    longtermsurvivor said:

    Have any of them said why?
    General rules are that you cannot be reirradiated within two years. Other than that, with IMRT you really can be irradiated twice. The dose is fractionated such that it spares overexposure to key structures, like spine and carotid arteries, thereby avoiding catastrophic compications. In my case, I can tell they came in with some pretty crazy angles to do my rads this second time. For instance, I'm not growing my sideburn back on the opposite side. And I can see where they really pumped in the rads this time, over the angle of my jaw on the side with the cancer. I would say the only doctor who could definitively say you cannot be radiated a second time would be the radiation oncologist who did your original dosimetry, or someone equally quallified who has reviewed the actual treatment plan.

    Don't know if this helps.

    Pat

    thanks
    i certainly understand why imrt would allow a second go round.

    my radiation was 16 plus years ago with no primary, so there probably are no area's that were not hit

    thanks
    john

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