I have a tx plan

hwt
hwt Member Posts: 2,328 Member
in Head and Neck Cancer #1

Another 3 days at Mayo this week and I am set to go back next Mon-Fri for SBRT high dose precicison radiation. They consulted with MDAnderson and neither saw an advantage with proton therapy over SBRT. With proton therapy, it targets the tumor and stops but there isn't much in the way of studies on long term yet to look at. Proton 7 weeks, SBRT 5 days. SBRT hits tumor then quickly drops off lessening residual effects and tissue damage to good tissues. 5-10% chance my carotid could hemorrage but 80% chance of reducing or eliminating tumor. I know docs don't usually "come in on" their colleagues but they said thiscould have been found on scan last January and definitely should have been seen on my April scan. A very young, very skilled, doc went in thru my cheek and worked his way CT guided past facial nerve, swallow nerve, carotid, etc. to base of skull for biospy with no damage. I had an MRI and then once mask made, yesterday I had another MRI with mask on that lasted 70 minutes. The mask is heavier than my last and can't have eye or mouth cutouts because of stability and precision set up. It goes down over shoulders. Initially, I felt as if it was chocking me. Unable to open my mouth to say "help me". Terrifying experience. When I came out, I totally lost it, they brought my sister in and she lost it then the nurse started crying.  Thankfully, plane was at airport waiting for me and I bolted.  Happy it was my last appt. and not the first. I'll need a little help from xanax next week but am determined to get through it. Atleast I know the head pounding MRI won't be part of it next week. My family has been an absolute Godsend. Happy to have an option and hope. 

Candi

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
    candi, you've been thru so

    candi, you've been thru so much already, it just breaks my heart that u still have so much ahead.  i'm glad they've got the tx plan and i know you can do.  i'm praying you will have few if any side effects.  i will keep you in my prayers!!  please keep us posted and let us know how tx is going.  God bless you.

    dj

  • jim and i
    jim and i Member Posts: 1,788 Member
    #3
    Happy for the plan found, but sad going through it

    I am praying God's closeness and comfort are felt by you during this tx plan. I pray for a complete cure as well. May you feel God's loving arms around you and your family.

    Debbie

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #4
    The Mask

    Hi Candi,

    Ohhh my... I know what you mean about that mask! Mine was similar in that it covered my chest as well. No holes cut out and a mouthpiece I had to bite down on to keep my head and neck precisely in position. When they snapped that puppy down the first time I was shocked how tight it was! The best I could do was utter a "MMmmph Mmpph" with that thing on. It was hard to breath through my mouth due to the mouthpiece and swelling. Afrin became a mask buddy during treatment. 

    I'm really glad they have a treatment plan with positive odds on successfully treating you! That's HUGE! Do what you have to do keep yourself calm and.... Kick Jack's A$$!!

    Positive thoughts and prayers. 

    "T"

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    Plan & Treatment

    Candi,

    I never experienced an anxiety attack until I got started on scans and radiation.  Help me God, I was terrified.  After struggling through my first scan I NEVER went without my Lorazapam.  I will be thinking of you daily and hoping for you to find calm when adjusting to this treatment regimen.  Even if you cannot speak you know they are watching you every moment and one quick hand jester will stop everything.

    As you know, these next few weeks will be over soon and you can move forward with success.  Bless your sister for being with you, real life can be so scary.

    Stay positive,

    Matt

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #6
    Hopefully

    I will be following you soon.  Thank you for sharing.  I have an appointment at Stanford on the 27th.  Hopefully a plan will be made.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    Hi Candi

    I'm glad to hear there is a plan.  Sorry to hear of its difficulty.  Before they put that mask back on you, talk to them about hand signals.  I had to do that during the end of my last radiation. Mucus was so huge and sticky i was afraid I'd drown.  I didn't but it helped to have a bail-out plan if an emergency had arisen.

     

    Pat

  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
    We gotta say it....

    Thank God, there is a plan...options and hope are at the top of the list when dealing with cancer!!  My mask also fit over the shoulders and almost down to my boobs.  Honestly, I believe that with the xanax will get you through this without being so close to the edge.  Did I read that right....that with the SBRT your rad treatments will only go on for 5 days?  OMG, that is wonderful!!  I've heard over the last months about Proton Therapy....but this is the first I've heard about SBRT....please fill us in on this type of Radiation Therapy.

    You are amazingly strong....we're here cheering you on from the sidelines.

    p 

  • donfoo
    donfoo Member Posts: 1,773 Member
    #9
    Xcellent news!

    Candi,

    So glad you have a solid treatment plan that comes from two great facilities. Five days - shoot - that'll be over before you blink for a warrior like you. Best wishes to you, don

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #10
    I'm amazed

    and inspired by your strength!  I am so glad that there is a plan in place and pray for nothing but good results and HEALTH!  ((HUGS)) to you and know you have my daily prayers. 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    Thoughts & Prayers

    Coming your way....

    Xanax is wonderful for knocking the edge off of anxiety...

    There with you and holding your hand...

    John

  • hwt
    hwt Member Posts: 2,328 Member
    #12
    Skiffin16 said:

    Thoughts & Prayers

    Coming your way....

    Xanax is wonderful for knocking the edge off of anxiety...

    There with you and holding your hand...

    John

    Thanks

    Thanks for the support! I knew I could count on everyone and that means allot during this anxious time. Yes, Phrannie, SBRT is only 5 tx. They expect only side effect during first 5 days maybe tired near end of week. When I get home may have sore throat but no side effects like I experiencedwith initial tx. The idea is that the precision pointed radiation hits the tumor and only the tumor with an extremely high dose and then quickly fades out. The tumor sits behind my throat so lips, mouth, etc. should be spared. Technology is progressing to the point where, hopefully, in the future people will be spared what we have all gone through. Wouldn't that be a blessing! I believe with my first go round, the area was so large that this would not have been an option. Pat, I already thought about the mucus. That was never an issue in prior tx and they haven't mentioned it so hope not this time either. And, T, I also thought about keeping my nose clear and Afrin is a great idea...thanks! They do give me a ball to hold in my hand to alert them if I need help. When I felt like I was getting into trouble, I knew I was down to my last 10 minutes and held on because I didn't want to start the 70 minutes over or rule out SBRT as my option. If I press the ball, I can't talk to explain it's just panic so they could talk me thru it. Maybe I will come up with a signal...3 squeezes means talk me thru this....1 means get me out! You guys are the best with suggestions!   

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #13
    hwt said:

    Thanks

    Thanks for the support! I knew I could count on everyone and that means allot during this anxious time. Yes, Phrannie, SBRT is only 5 tx. They expect only side effect during first 5 days maybe tired near end of week. When I get home may have sore throat but no side effects like I experiencedwith initial tx. The idea is that the precision pointed radiation hits the tumor and only the tumor with an extremely high dose and then quickly fades out. The tumor sits behind my throat so lips, mouth, etc. should be spared. Technology is progressing to the point where, hopefully, in the future people will be spared what we have all gone through. Wouldn't that be a blessing! I believe with my first go round, the area was so large that this would not have been an option. Pat, I already thought about the mucus. That was never an issue in prior tx and they haven't mentioned it so hope not this time either. And, T, I also thought about keeping my nose clear and Afrin is a great idea...thanks! They do give me a ball to hold in my hand to alert them if I need help. When I felt like I was getting into trouble, I knew I was down to my last 10 minutes and held on because I didn't want to start the 70 minutes over or rule out SBRT as my option. If I press the ball, I can't talk to explain it's just panic so they could talk me thru it. Maybe I will come up with a signal...3 squeezes means talk me thru this....1 means get me out! You guys are the best with suggestions!   

    something like that

    They have done the signal thing before, so you don't have to do anything but bring it up.  Your treatment can be interrupted, then  resumed the same session.  My signal wasn't to do with mucus, it was just simply if my hand went up, they STOPPED and were at my side in two seconds.  Its worth knowing they can bail you out in a hurry without hurting your treatment, even if you never need it.  It turned out I didn't need it.  The rest of the story on my treatment was I had so much facial swelling from rads and erbitux, that the mask fit like a surgical  glove.  It cut deep waffles into my face.  So I kinda can identify with you on the closed  in feeling.  They came close to having to rebuild mine, it was so tight it was hard to attach.  But I survived.  It was nice just to have the reassurance.

  • Greg53
    Greg53 Member Posts: 849
    #14
    longtermsurvivor said:

    something like that

    They have done the signal thing before, so you don't have to do anything but bring it up.  Your treatment can be interrupted, then  resumed the same session.  My signal wasn't to do with mucus, it was just simply if my hand went up, they STOPPED and were at my side in two seconds.  Its worth knowing they can bail you out in a hurry without hurting your treatment, even if you never need it.  It turned out I didn't need it.  The rest of the story on my treatment was I had so much facial swelling from rads and erbitux, that the mask fit like a surgical  glove.  It cut deep waffles into my face.  So I kinda can identify with you on the closed  in feeling.  They came close to having to rebuild mine, it was so tight it was hard to attach.  But I survived.  It was nice just to have the reassurance.

    Go Git 'em

    Candi,

    Great to hear you got a plan.   And throw that ball at one of them if you have issues on the table (think Wainwright, or maybe Gibson from our era).  Nobody but toughies from ol' St Lou.

    Kick some butt, girl!!

    Greg

Discussion Boards