METASTATIC... LIVER LUNGS AND BONE

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JANIE2620
JANIE2620 Member Posts: 4
in Head and Neck Cancer #1

IVE JOINED THIS FOR MY FATHER NOW 60. HE WAS DIAGNOSED ON NOV 1ST 2013, WITH SQUAMOUS CELL CARCENOMA. I HAD WORKED IN ONCOLOGY AND HEMATOLOGY SINCE 2009 AND HAD LEFT THE PRACTICE FOR NEUROLOGY IN 2012. I CONTACTED MY DOCTOR THAT I HAD WORKED FOR AND WAS ABLE TO LET ME COME IN AND TALK TO HIM LITERALLY RIGHT AFTER WE GOT THE DIAGNOSIS FOR MY FATHER. HE DID A STAT PET ON HIM THAT SAME WEEK AND ESTABLISHED HIM ON THE DAY OF THE RESULTS. MY FATHER WAS THEN DIAGNOSED WITH HEAD AND NECK CANCER STAGE 4. THEY SAW A MASS IN HIS T2 AND SHOWED CONCERN AS WELL. UNFORTUNATELY MY FATHER HAD TO GET CLEARANCE OF HIS MOUTH FOR RADIATION AND IT WASNT SO GOOD. MY DOCTOR DIDNT WANT MY FATHER TO GO ON WITH NO TREATMENT SO HE STARTED HIM ON THE CISPLATIN, CARBO, & 5FU PUMP EVERY 21 DAYS. FOR 3 MONTHS. HE GOT A BREAK OF 1 MONTH AND THEN RADIATION WAS STARTED. HE WAS TO GET ERBITRUX BUT HE HAD A SEVERE REACTION THAT SENT HIM TO THE HOSP. SO HE HAD TO STAY WITH THE REGIMEN THAT HE WAS ALREADY ON. HE CONT. FOR A MONTH BUT THEN HIS MUCOSITIS WAS SO BAD THAT HE WAS HOSPITALIZED. ( HE ALREADY HAD HIS PEG TUBE PUT IN) HE HAD TO MISS ANOTHER MONTH OF RADIATON AND CHEMO. HE IS ALSO NEUTROPINIC AND HAS BEEN IN AND OUT OF HOSP BECAUSE OF IT. JULY WAS HIS LAST HOSPITALIZATION SO FAR. THAT IS WHEN WE GOT A RESCAN AND SHOWED THAT HIS CANCER HAS SPREAD TO HIS LUNGS LIVER AND BONES. SINCE THEN WE DID HIS LAST ROUND OF RADIATION THAT HIS BODY CAN TAKE IN THE HOSP AND HE HAS BEEN ON CHEMO SINCE THEN. HIS RESCAN RESULTS WAS THIS MONDAY 10.6.14. NOTHING HAS REALLY CHANGED, HIS LUNGS ACTUALLY GOT WORSE AND HE DEVELOPED A NEW SPOT ON HIS ABDOMEN ABOVE HIS KIDNEYS. AT THIS POINT WE DONT KNOW WHAT TO DO OR TRY AS A FAMILY. ANY INPUT OR EXPERIENCES WOULD BE GREATELY APPRICIATED ( HIS CHEMO DRUGS HAVE CHANGED EVERYTIME TO MEET THE CHANGES )

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  • donfoo
    donfoo Member Posts: 1,771 Member
    #2
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    sorry you are here

    Hi,

    I'm sorry you have found us here but you've found a great resource of patients and survivors of SCC. Your post is quite detailed and that helps alot. Your father has been through one hell of a journey with the horrible side effects and delays. From what you posted it seems he did get induction chemo first: cisplatin, carbo and 5FU. (Usually they use a taxane rather than two platins). Then chemo-radiation with erbitux. Then in July the scan showed distant metastasis to lungs, liver, and bones. Chemo to try to contain the spread. Doing all you can to maintain as much qualtiy of life, managing the pain, and being comfortable would be the primary things. Since he has severe reactions to chemo, you need to find the tradeoff there. I wish you well.  

  • JANIE2620
    JANIE2620 Member Posts: 4
    #3
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    donfoo said:

    sorry you are here

    Hi,

    I'm sorry you have found us here but you've found a great resource of patients and survivors of SCC. Your post is quite detailed and that helps alot. Your father has been through one hell of a journey with the horrible side effects and delays. From what you posted it seems he did get induction chemo first: cisplatin, carbo and 5FU. (Usually they use a taxane rather than two platins). Then chemo-radiation with erbitux. Then in July the scan showed distant metastasis to lungs, liver, and bones. Chemo to try to contain the spread. Doing all you can to maintain as much qualtiy of life, managing the pain, and being comfortable would be the primary things. Since he has severe reactions to chemo, you need to find the tradeoff there. I wish you well.  

    Thank you

    Thank you donfoo for your response..... We are actually getting together with my father to talk about his options tomorrow.  He is a tough courageous man that I love dearly,  he has been so strong through this all... 

  • katenorwood
    katenorwood Member Posts: 1,912
    #4
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    JANIE2620 said:

    Thank you

    Thank you donfoo for your response..... We are actually getting together with my father to talk about his options tomorrow.  He is a tough courageous man that I love dearly,  he has been so strong through this all... 

    personalized meds.

    Janie I am so sorry.  Have they talked about any trials ?  You could ask.  (and if your onc's don't ask where they might be available)  When I talk about personalized medicine I'm referring to something that would work specific for the bodies DNA/RNA breaks.  (what's specific to his dx, and tumor types)  Most of this is way above my head, but I know it's out there, actually in use.  I'm keeping only positives being sent his direction, and yours.  Pain control is vital, as I'm sure your on top of.  Katie

  • louhou13
    louhou13 Member Posts: 46
    #5
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    Clinical trials

    Hello everyone,

    It's been quite some time since I've piped in. I visit the site often and am still inspired by everyone who posts. After declining radiation (already previously radiated in area) for recurrence of SCC I joined a clinical trial using Anti PDL1. After 6 months on the trial I am happy to say my tumors have shrunk and I am side effect free. I go to The Angeles Clinic in Los Angeles (Dr. Ani Balmanukian) for bi-monthly infusions. Statistically, the drug will work 20% of the time. I highly recommend you look into this. Specifically, I am on Medimmune 4736 with 1108 protocol.

    Sending prayers and good thoughts your way!

  • donfoo
    donfoo Member Posts: 1,771 Member
    #6
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    louhou13 said:

    Clinical trials

    Hello everyone,

    It's been quite some time since I've piped in. I visit the site often and am still inspired by everyone who posts. After declining radiation (already previously radiated in area) for recurrence of SCC I joined a clinical trial using Anti PDL1. After 6 months on the trial I am happy to say my tumors have shrunk and I am side effect free. I go to The Angeles Clinic in Los Angeles (Dr. Ani Balmanukian) for bi-monthly infusions. Statistically, the drug will work 20% of the time. I highly recommend you look into this. Specifically, I am on Medimmune 4736 with 1108 protocol.

    Sending prayers and good thoughts your way!

    Thanks!

    It is a rare event when we get reports of suvivors on trials and showing such great results. Maybe you can start a new thread so it is more easily noticed, it is really great news. So glad you are seeing positive response with no side effects. Amazing!

  • wmc
    wmc Member Posts: 1,804
    #7
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    Don't know what to say........

    I really do no know what to say but sorry to hear the news. Will keep you in my Thoughts and prayers.

  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
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    I can't offer much in advice

    I can't offer much in advice that hasn't been given. I am owever praying for a miracle for your dad.

    Debbie

  • Jeff2159
    Jeff2159 Member Posts: 108
    #9
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    Sorry about your dad

    I've done the same with radiation, carboplatin and 5-fu and erbitux and if your dad had similar side effects as I have had he has already gone through hell and back. We are all looking for that magic bullet but there is only so much we can do. Just make sure your dad is comfortable and out of pain and tell him you love him.

     

    good luck

    Jeff

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
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    janie, i'm so sorry about all

    janie, i'm so sorry about all of this and I can't add anything but want you to know that I will be praying for your dad and your family.  you are all in a very critical position and only your dad will be able to make the decision of what to do next.  it will be your job to be there and support him through it.  we will all be here for you anytime you need to talk or whatever.  i wish we could do more.  it always tears my heart when i hear such harsh news.

    God bless you and your family,

    dj

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