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sassysrice
sassysrice Member Posts: 117
in Head and Neck Cancer #1
My boyfriend Jeff was diagnosisted with SCC at the base of the tongue a couple weeks ago. He stats rads next tues and chemo fri. 35 rads and 7 chemo. He already had his mask made. The hardest part of the mask is the stick that holds his tongue down. Can anyone relate? I have been reading many of you guys/gals posts since we found out and i think all of you are just amazing people. I have learned alot here and hope to obtain comfort and strength from you all. It's going to a hell 7 weeks. I have a 12 year old and I had to tell her Christmas is going to be tough (she's very concerned about her stepdad) Thanks Sue

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    first thing you do is this
    Hi Sue,

    Nice to meet you and welcome to our piece of sanity.

    It was December 23rd of last year when I was officially told I had cancer (no gift to top that).

    I had what I called a mouth piece snorkel to go with my Mask. I also had to insert 4 dental rolls prior to zap each time (they were to help protect my teeth, which I still have). My mouth piece kept me biting down throughout treatment (I was afraid I would let up). He might ask the techs if there are any tricks to his mouth piece.

    Stay comfortable and I hope he has a smooth journey.

    Best,

    Matt
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Stick...Mouth Piece....
    Man, you guys had it rougher than I did....

    I hated the mask, tight, couldn't see, waffle marks across my face and forhead, LOL...but no puth piece,.

    Welcome Sue....

    LOL, sorry didn't mean to get on a tangent...

    I needed a little Xanax for the first week for the anxiety, but no longer needed week two.

    As Matt says, I'm sure the techs will help if there is a way... and of course the many here as well.

    Best,
    John
  • sassysrice
    sassysrice Member Posts: 117
    #4
    CivilMatt said:

    first thing you do is this
    Hi Sue,

    Nice to meet you and welcome to our piece of sanity.

    It was December 23rd of last year when I was officially told I had cancer (no gift to top that).

    I had what I called a mouth piece snorkel to go with my Mask. I also had to insert 4 dental rolls prior to zap each time (they were to help protect my teeth, which I still have). My mouth piece kept me biting down throughout treatment (I was afraid I would let up). He might ask the techs if there are any tricks to his mouth piece.

    Stay comfortable and I hope he has a smooth journey.

    Best,

    Matt

    tks
    thanks Matt
    hope you are now NED. I will have him ask. I guess the up side is he has no teeth to worry about.
    Sue
  • sassysrice
    sassysrice Member Posts: 117
    #5
    Skiffin16 said:

    Stick...Mouth Piece....
    Man, you guys had it rougher than I did....

    I hated the mask, tight, couldn't see, waffle marks across my face and forhead, LOL...but no puth piece,.

    Welcome Sue....

    LOL, sorry didn't mean to get on a tangent...

    I needed a little Xanax for the first week for the anxiety, but no longer needed week two.

    As Matt says, I'm sure the techs will help if there is a way... and of course the many here as well.

    Best,
    John

    mask
    I thought the mask was suppose to have eye and nose openings. I hoped that after we left having it made they would cut them in. What was anyone elses mask like?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    No Cut Outs on Mine..
    Sue, pretty much no standard I believe....

    Mine had no cut outs at all...

    But several have had the eyes cut out, not sure on the mouth or nose.

    BTW, to let you know there is survival here...I was STGIII SCC HPV+ Tonsils, and a lymphnode.

    Nine weeks of chemo (cisplatin, taxotere and 5FU) in three week cycles, then like your bf, seven weeks of concurrent weekly carboplatin, and 35 daily rads...

    Clean and clear, Dx January 2009, finished Tx Jun2009.

    Life is good, with 100% of taste back, and around 95% of the saliva back.

    I'm one of many with very good results and recovery... More than likely you guys will be also.

    Again, welcome....

    JG
  • patricke
    patricke Member Posts: 570 Member
    #7
    Hey Sue, I also had base of tongue SCC, and although it was quite a while ago, I remember the rad zap sessions all too well. They were not something that I looked forward to, and I always thought that my techs should have been wearing hoods over their heads like dungeon masters. One tech wore Hawaiian shirts, which was actually pretty cool, and added a little levity to the process. You are so right, it is no walk in the park, but more like going through a gauntlet, however, Jeff can do it. Just remember to deal with it one day, hour, or second at a time, and pace yourself because it is like running a marathon, not a sprint.

    PATRICK
  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
    I must have gotten lucky!
    I didn't have anything in my mouth...and they cut out eye holes for me. You can see a pic of me in my mask on my expressions page.

    John is right....if there is a way to make a mouth piece more doable, the techs will know about it...the best thing your man can do during this whole treatment is communicate everything to the techs and the Dr.'s.

    Welcome to our little club, Sue...you'll find a whole lot knowledge here by those who did it...you be sure and ask any questions you might have, also. There's usually somebody around here who will have a suggestion or an answer.

    p
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #9
    phrannie51 said:

    I must have gotten lucky!
    I didn't have anything in my mouth...and they cut out eye holes for me. You can see a pic of me in my mask on my expressions page.

    John is right....if there is a way to make a mouth piece more doable, the techs will know about it...the best thing your man can do during this whole treatment is communicate everything to the techs and the Dr.'s.

    Welcome to our little club, Sue...you'll find a whole lot knowledge here by those who did it...you be sure and ask any questions you might have, also. There's usually somebody around here who will have a suggestion or an answer.

    p

    one more Matt unmasked
    P51 your picture makes me remember vividly. I can’t believe they gave out masks and forgot to cut out the eye holes. Man that was part of my salvation being able to see. At one point when the machine was straight overhead I could see myself in the mask.

    Matt
  • phrannie51
    phrannie51 Member Posts: 4,716
    #10
    CivilMatt said:

    one more Matt unmasked
    P51 your picture makes me remember vividly. I can’t believe they gave out masks and forgot to cut out the eye holes. Man that was part of my salvation being able to see. At one point when the machine was straight overhead I could see myself in the mask.

    Matt

    I think at some of the treatment centers....
    a person has to ask for each and everything they need...I was all prepared to ask for the eyeholes in my mask, when the tech came up with a pen and drew them on the mask...the only reason I knew about asking was from being on this forum. I feel terrible for the folks who don't find us until after treatment, or not at all...being "out there" thinking that whatever is happening is just the way it is....lost in a foreign land. I truly doubt I would have asked for eyeholes if I hadn't been here (and they wouldn't have provided them on their own).

    p
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #11
    CivilMatt said:

    one more Matt unmasked
    P51 your picture makes me remember vividly. I can’t believe they gave out masks and forgot to cut out the eye holes. Man that was part of my salvation being able to see. At one point when the machine was straight overhead I could see myself in the mask.

    Matt

    eye cut out
    David got really freaked out by the mesh over his eyes. The tech then cut dye holes for him and it helped a lot. You may just need to ask. I hope all goes well on your journey.
  • sassysrice
    sassysrice Member Posts: 117
    #12
    Skiffin16 said:

    No Cut Outs on Mine..
    Sue, pretty much no standard I believe....

    Mine had no cut outs at all...

    But several have had the eyes cut out, not sure on the mouth or nose.

    BTW, to let you know there is survival here...I was STGIII SCC HPV+ Tonsils, and a lymphnode.

    Nine weeks of chemo (cisplatin, taxotere and 5FU) in three week cycles, then like your bf, seven weeks of concurrent weekly carboplatin, and 35 daily rads...

    Clean and clear, Dx January 2009, finished Tx Jun2009.

    Life is good, with 100% of taste back, and around 95% of the saliva back.

    I'm one of many with very good results and recovery... More than likely you guys will be also.

    Again, welcome....

    JG

    He also has STGIII SCC HPV+
    He also has STGIII SCC HPV+ and a lymphnode no tonsil since he had them out as a kid. The Dr said the having the HPV+ was actually good means more curiable. Glad to hear life is good now for you. Were you a smoker? If so was it hard to quit with the stress. And if anyone can weigh in on this
  • sassysrice
    sassysrice Member Posts: 117
    #13
    patricke said:

    Hey Sue, I also had base of tongue SCC, and although it was quite a while ago, I remember the rad zap sessions all too well. They were not something that I looked forward to, and I always thought that my techs should have been wearing hoods over their heads like dungeon masters. One tech wore Hawaiian shirts, which was actually pretty cool, and added a little levity to the process. You are so right, it is no walk in the park, but more like going through a gauntlet, however, Jeff can do it. Just remember to deal with it one day, hour, or second at a time, and pace yourself because it is like running a marathon, not a sprint.

    PATRICK

    tks Patrick for the words of
    tks Patrick for the words of encouragment. I just get so stressed out. I am legally blind and don't drive so I am trying to line drivers up for Jeff when he gets tosick to drive and rides for my daughter to and from school and activities. We own our own handyman business with a couple guys working for us who still needs to be babysat... so there goes our income. We have a new 3 month old GS puppy who stills bites and grabs ahold of pants sleeves and ankles. But I am trying to take it one monet at a time. tks for my little venting.
    Sue
  • sassysrice
    sassysrice Member Posts: 117
    #14
    phrannie51 said:

    I must have gotten lucky!
    I didn't have anything in my mouth...and they cut out eye holes for me. You can see a pic of me in my mask on my expressions page.

    John is right....if there is a way to make a mouth piece more doable, the techs will know about it...the best thing your man can do during this whole treatment is communicate everything to the techs and the Dr.'s.

    Welcome to our little club, Sue...you'll find a whole lot knowledge here by those who did it...you be sure and ask any questions you might have, also. There's usually somebody around here who will have a suggestion or an answer.

    p

    TKS
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #15
    sassysrice said:

    He also has STGIII SCC HPV+
    He also has STGIII SCC HPV+ and a lymphnode no tonsil since he had them out as a kid. The Dr said the having the HPV+ was actually good means more curiable. Glad to hear life is good now for you. Were you a smoker? If so was it hard to quit with the stress. And if anyone can weigh in on this

    No Tobacco Use
    Hi Sue, no I was never a tobacco user...HPV is the new culprit to a large majority of H&N Cancers.

    They actually feel it will over take tobacco related H&N cancer within the next few years...

    And yes, there has been mention that the HPV+ cancer does tend to respond well to treatment. But as we tend to say here, cancer is cancer, each of us are different and each bring something different to the table.

    There have been a few smokers here that have quit smoking since treatment. I would hope that anyone that has/had cancer would seriously consider tobacco use.

    If you haven't checked out the SuperThread, it's a great place for information and reference;

    SuperThread

    Best,
    John

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