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Just started my 35 treatments with Erbitux infusion once a week. Anyone do the same treatment for HPV neck cancer?

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  • ricksmithgolfer
    ricksmithgolfer Member Posts: 87 Member
    edited August 2018 #2
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    just started also

    I started this Monday. 35 rads and 3 heavy dose Cisplatin infusions weeks 1, 4 and 7. Had my first Cisplatin Infusion Tueday. Feeling fine so far this evening. Took my nausea meds today and they seem to be working so far. I think tie next several days will tell the story a little better. One of my worst fears leading into the treatment was being able to handle the mask and being bolted down to the table. I have been taking 1 1/2 mg of Activan for the mask making and the 3 rads I have completed and so far no problems. I will probably cut down to 1 mg next Monday and see how I do. My cancer is right tonsil with 4 lymph nodes same side in upper portion of neck. The nodes are so small you can't see or feel them form the outside. My cancer is HPV Positive which has a 90 plus percent cure rate. This year the staging changes and HPV Positive cancers were seperated out from HPV Negative cancers. Under the new staging my staging went from a 4a to a stage 1. The treatment plan does not really change, I think they just want to indicate the different long term survival rates for the HPV Positive cancers. They feel strongly they can get all my cancer with radiation and high dose Cisplatin. Hopefully they will be successful and no surguries will be required in the future. I have had to do a lot of soul searching since this has happened. Lots of crying and high stress and anxiety. As scared as I am about what the new me will be in the future I am kind of relieved the treatment has started. I want htis beast out of my body. I think I have prepared myself well with all the proper medical help and teams. This site since I recently found it has been fantastic. You find out so much from your fellow cancer warriors on ways to cope with so many issues that come up. I have learned so many things that the cancer team have not mentioned. Good luck in your journey and May God Bless You. I plan on posting regularly on this site so lets keep in touch since our journey will run together.

     

    Rick

  • azruben
    azruben Member Posts: 4
    edited August 2018 #3
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    Good to be able to talk to

    Good to be able to talk to someone on the same path and time frame. So far the chemo is messing up my face and my skin is dry but other than that I feel fine. 

  • heatherN
    heatherN Member Posts: 2
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    Stage 1 HPV

    My dad had a tonsil removed and it came back as stage 1 HPV cancer. The ENT was certain he got it all. (99% sure) He said it was inside the margin. He referred him to a Oncoslogist just to be sure. Did a PET scan, no signs of cancer. But they still recommended radiation. He is on day 16 of radiation. No taste buds, sores in mouth, depression, burning in neck. He goes every day, 5 days per week. Does this seem like an agressive treatment for someone if the cancer was removed? I guess im asking, should we have ever decided on radiation? Should we have just went with the removal of the tonsil? He's ready to stop radiation. I don't know how to help him make his decision. Its scary. 

     

     

     

  • ericyvonne
    ericyvonne Member Posts: 7
    edited August 2018 #5
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    Just starting too

    My husband had is left tonsil removed (1 cm tumor/positive margin) and left dissection where 14 lymph nodes had cancer.  He is stage 2 with new staging (HPV +).  Next Monday he starts 6 1/2 weeks of proton therapy and 3 Cistoplatin, week 1, 4, 7.

    He is finally starting to feel 'normal' post surgery, only to start the next phase.  I am really hoping that proton therapy will cause less side effects and long term issues.

     

    Would love to hear from anyone who did proton over photon??

     

    Thanks!!

  • azruben
    azruben Member Posts: 4
    edited August 2018 #6
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    Pet scan

    I also had a pet scan and it didn’t show anything significant after a neck dissection and removal of the tumor from my throat. They still wanted to do radiation and chemo but I already have hearing loss in right ear so they are using urbitux infusion once a week and radiation 5 days a week for 7 weeks. I’m on week 3 and got sores in mouth and occasionally get sharp neck pains with the tenderness I already have on the side I got the dissection on. It’s basically the standard they give everyone no matter the stage. It seems like over kill and I’m only going to go to go to week 6 and stop when I reach 6000 on the radiation. They wanted to do the max 7000 on me but I’m thinking about the long term effect of the radiation to my muscle tissue in my neck. I’m 40 and would like to be able to  food in 10 years Without any problems. 

  • azruben
    azruben Member Posts: 4
    edited August 2018 #7
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    Proton

    If I had a option to do proton, I would have. It has less side effects and is does not damage other tissues as much as photon. 

  • ByeByeCancer
    ByeByeCancer Member Posts: 54 Member
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    Yes! My husband had 8 weekly

    Yes! My husband had 8 weekly Erbitux infusions and 35 radiation sessions for HPV+ base of tongue cancer.  He finished treatment in November 2017 and has had clear CT and PET scan since.  You can click on my name to see the long version of the story, but the short version is that he got through it all and is doing really well now!  This will be behind you before you know it.  Hang in there!

  • skidog
    skidog Member Posts: 74 Member
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    Just starting too

    My husband had is left tonsil removed (1 cm tumor/positive margin) and left dissection where 14 lymph nodes had cancer.  He is stage 2 with new staging (HPV +).  Next Monday he starts 6 1/2 weeks of proton therapy and 3 Cistoplatin, week 1, 4, 7.

    He is finally starting to feel 'normal' post surgery, only to start the next phase.  I am really hoping that proton therapy will cause less side effects and long term issues.

     

    Would love to hear from anyone who did proton over photon??

     

    Thanks!!

    week 6 post proton therapy

    Hello, please look at my posts regarding proton. glad I had. skidog. good luck!