3 Month PET= NED!!

skidog
skidog Member Posts: 74 Member
in Head and Neck Cancer #1

Hello, Just thought I would send an update on my cancer journey. diagnosed in March with HPV+ HNC, right tonsil and right lymph node. Treatment was 6 weeks daily proton beam radiation at Mayo clinic. Initially insurance denied out of network proton beam rads therapy stating it was "experimental". After a written letter from my doctor at  Mayo and a 20 minute confeence call meeting with the 9 member board from my Insurance company (Quartz) they reversed their original denial and agreed to pay "level 1 in network" costs for proton beam therepy. Additionally, Mayo made an organizational decision this year to lower the cost of proton beam therapy to that of photon radiation. Had my 3 month PET today and it came back clear. NED! Grateful for my care team and very thankful to the members of this board. I've learned so much from many of you. Now, at 3 months post treatment my taste is 85% back, saliva 95% back and energy is 100%. I lost 50 lbs during this ordeal but in the last month have put back on 15lbs. Looking forward to a healthy 2019. That is my wish for all here dealing with this disease. Keep up the fight!!!

Comments

  • bebo12249
    bebo12249 Member Posts: 181 Member
    #2
    Outstanding on your NED. Also

    Outstanding on your NED. Also sounds like you’re making great progress otherwise..

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member
    #3
    Congratulations skidog and a Hearty Hurray

    Sounds like you are doing great, with insurance company agreement, that is big and will help others in the future as they are considered. You have a fresh NED report, taste, saliva, energy all good sounds like your best days are ahead and I am thankful you feel so good. Yours is a great report and saying a lot for your medical team. God Bless and congrats on recovery-Russ

  • swopoe
    swopoe Member Posts: 492
    #4
    Great news! Congrats on how

    Great news! Congrats on how well you are doing too! I just watched a documentary on the Mayo Clinic on PBS and it was fascinating. Sounds like an amazing place!

  • skidog
    skidog Member Posts: 74 Member
    #5
    Thanks..

    Russ, Beboe and Swopoe. As they say..everyone is different and no two cancers are exactly the same. That said, both UW Cancer Center and Mayo Clinic are treating this type of cancer diffeently than in the past. HPV+ and other factors (stage of disease/patient age and health) have taught them that many times this type of cancer responds extremely well to,radiation alone and/or combined with "some" Chemo.  My message is not to make anyione second guess their own treatment decisions..but only to give others looking into options another voice. In my case...there was time to spend looking for the very best option for me. Mine was caught early. right side tonisl tumor (1cm) and two right side lymph nodes. So I spent about 4 weeks fighting my Insurance company to cover Proton Beam. It's doable. 

  • Andrea39
    Andrea39 Member Posts: 36
    #6
    skidog said:

    Thanks..

    Russ, Beboe and Swopoe. As they say..everyone is different and no two cancers are exactly the same. That said, both UW Cancer Center and Mayo Clinic are treating this type of cancer diffeently than in the past. HPV+ and other factors (stage of disease/patient age and health) have taught them that many times this type of cancer responds extremely well to,radiation alone and/or combined with "some" Chemo.  My message is not to make anyione second guess their own treatment decisions..but only to give others looking into options another voice. In my case...there was time to spend looking for the very best option for me. Mine was caught early. right side tonisl tumor (1cm) and two right side lymph nodes. So I spent about 4 weeks fighting my Insurance company to cover Proton Beam. It's doable. 

    Its great to know about your results dear Skydog. Congrats.

    Its great to know about your results dear Skydog. Congrats. 

    Here are the readings from my first post-treatment pet scans. Kindly let me know how do you find these results as compared to yours. Are these encouraging. (History: Right tonsil Hpv + cancer with lymph nodes involved).

    Key excerpts from the report below:

    1. Previously noted enlarged right cervical lymph nodes have significantly decreased in size. For reference, right level II measures 1.0 cm (short axis) with the activity of 3.1 SUV (previously 2.4 cm, 9.2 SUV), right level III node measures 0.6 cm (short axis) with the activity of 3.0 SUV, previously (3.0 cm, 11.3 SUV).

    2. There is a mild asymmetric increased uptake in right lingual and palatine tonsils with the activity of 4.7 and 4.1 SUV respectively (previously it was 9.2 SUV). Diffuse hypermetabolic soft tissue thickening with SUV of 5.4 is seen in the supraglottic region causing mild narrowing of the laryngeal lumen; it is asymmetrically more on the right side. Findings most likely due to post radiation changes. However, would recommend ENT consultation to rule out underlying disease process.

    3. Previously noted small subcentimeter right inguinal nodes showing hypermetabolic activity are again seen. For reference, index node measures 0.8 cm with the activity of 3.3 SUV.

    Conclusion: Interval reduction in the soft tissue thickening hypermetabolic activity involving the tonsillar regions with interval reduction in the size of right cervical nodes and resolution of left inguinal lymph nodes.

    Interval development of hypermetabolic soft tissue fullness in the supraglottic region is most likely due to post radiation changes, however, ENT consultation is advised to rule out the underlying recurrent disease.

    The small subcentimeter right inguinal lymph nodes are still metabolically active and most likely reactive.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #7
    NED

    BBskidog,

    Good for you. Enjoy your recovery.

    Matt

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