Clinical trial

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mgvisek
mgvisek Member Posts: 4
in Head and Neck Cancer #1

My husband Mike was diagnosed with Hypopharangial cancer (which had matastisized to several lymph nodes in the right side of his neck) the first of April.  We choose to go with a clinical trial taking place at the University of North Carolina Cancer Hospital instead of traditional treatment.  He receives weekly chemo treatments (Paclitaxel followed by Carboplatin) and takes 1000mg of Lapatinib daily.  After 6 weeks, he will have surgery to remove any remaining cancer and if it's all gone, they will monitor him every 3 months.  If it's not, he will begin daily (Mon-Fri) radiation as well as 6 more weeks of chemo.  We chose this trial because he could potentially not have to have radiation, which from everything I have read, is the worse part of traditional treatment.  So far he has had 4 treatments and has tolerated the chemo fairly well.  No nausea, no loss of appetite - just tiredness, joint pain and diarrhea (which they gave him a prescription for after the 2nd treatment that helps tremendously) and now he is losing his hair.  The good news is that the cancer in one of his lymph nodes that was originally larger than an egg has all but disappeared!  Still, I'm worried about the primary site and the other lymph nodes we can't see.

I'm wondering if any one else on this forum has done a similar trial and what their outcome was.

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  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
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    watching

    Will follow this with interest.  My husband is five years out from late stage hypopharyngeal and BOT.  Agree radiation did the most damage known thus far.

    Prayers lifted for success in this new protocol.

  • hwt
    hwt Member Posts: 2,328 Member
    #3
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    Noellesmom said:

    watching

    Will follow this with interest.  My husband is five years out from late stage hypopharyngeal and BOT.  Agree radiation did the most damage known thus far.

    Prayers lifted for success in this new protocol.

    Interesting

    Sounds like a wonderful option and if it doesn't do the trick, you can still fall back on traditional tx. I would have made the same choice. Prayers for success.

  • avisemi
    avisemi Member Posts: 172
    #4
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    Yay!! For enlarged lymph

    Yay!! For enlarged lymph nodes disappearing!!!! I wish his treatment is extremely successful and that he doesn't need radiation.  

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
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    i just want to say hi and I

    i just want to say hi and I will be praying that the trail works and your hubby is soon cancer free.

    God bless you both.

    dj

  • wmc
    wmc Member Posts: 1,804
    #6
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    You're in my thought's and Prayers...........

    Welcome and at the same time, I am sorry you need to be here. I hope this treatment works and no radiation will be necessary. With each day the treatments are getting a little better and we hope one day soon they will find the answers to stop it altogether. Until then you both will be in my thought's and prayers. May your tomorrow's always be better than today.

    Bill

  • mgvisek
    mgvisek Member Posts: 4
    #7
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    Thanks!

    thanks everyone for your kind words.  As I type this he is sitting in his chair waiting to start chemo #5.  

    He started having extremely dry skin around his mouth and the moisturizer he is using doesn't seem to be helping.  Does anyone have a recommendation for something that worked well?

    thanks!

    melissa

  • mgvisek
    mgvisek Member Posts: 4
    #8
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    Aquaphor

    Thanks for suggesting this.  I actually already have it as we use it for our feet. It's like Vaseline, so he will most likely only try using it at night. 

  • hwt
    hwt Member Posts: 2,328 Member
    #9
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    mgvisek said:

    Thanks!

    thanks everyone for your kind words.  As I type this he is sitting in his chair waiting to start chemo #5.  

    He started having extremely dry skin around his mouth and the moisturizer he is using doesn't seem to be helping.  Does anyone have a recommendation for something that worked well?

    thanks!

    melissa

    Aquaphor Healing Ointment

    It is thick and greasy but does the job. It can be found at Walgreens for about $5. 

  • donfoo
    donfoo Member Posts: 1,771 Member
    #10
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    maybe i missed something

    Sounds great. The more I know about long term side effects, if surgery is an option that has a good chance of removing all the cancer, go for it. People recover from surgery quite nicely. Radiation is brutal and even if feeling great post recovery, there are long term side effects waiting to pounce years later. Good luck!

  • geohei40
    geohei40 Member Posts: 3
    #11
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    mgvisek

    hello, my husband also has hypopharyngeal squamous cell cancer that is hp negative.  It has spread to one lymph node on the left.  They are calling it stage 3 locally advanced disease.  We were so shocked by the dx and felt that too much time had been wasted so we went with the standard of care.What made you decide to go the trial? Was it mainly to avoid the radiation or did they believe that this new treatment would be more effective?  He is currently undergoing chemo/rad  7/7weeks.  It seems to be working - he is on the 6th week.  The tx is shrinking the lymph node but it will be so hard to wait another 12 weeks after tx ends to know if it worked.

    Please keep posting on his progress.

     

    thanks  Heidi

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