2nd Opinion Squamous Cell Tumor Lymph

MaBrewer
MaBrewer Member Posts: 2
in Head and Neck Cancer #1

Hi,

 

My husband has re-occuring tumor lymph HP-, had vocal nodule removed, next year neck dissection followed by chemo/radiation. 

2017, 3 month post treatment PET was told he was clear although there was a slight uptick in surgery area.  Insisted ion biopsy, were advised nothing to biopsy likely scar tissue.  To our horror 6 month PET "nothing" grew to a mass and was treated Extreme Regime platinum therapy completed 3/15/18.  He was scheduled to start multi-level immunotherapy trial after Extreme but it was canceled for redesign.

In the interim the tumor is back and growing, so discouraging. We have been to University of Chicago, Mayo and are currently at Froedert in Milwaukee area and is receiving Keytruda and weekly Cetuximab.  WE NEED to look for the next step and a more aggressive option. Any feedback on CAR-T cell or TILS or good results/experiences and treatment we are ready to travel.  We are looking at MD Anderson, Memorial Sloan and Johns Hopkins so any feedback is greatly appreciated especially specific to lymph tumor treatments. 

 

Many thanks!

 

Michele

 

 

         

Comments

  • utfandg
    utfandg Member Posts: 6
    #2
    second opinion

    My surgery was at Vanderbilt in Nashville. I had a second opinion at MD Andersen and they had the same exact treatment plan as Vanderbilt prescribed. MD Andersen scheduled evrything in a nice tight window of time. They did not miss a beat. Very impressive. Vanderbilt is top notch as MD Andersen agreed.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    stay in the game, you want to check all the boxes.

    Hi Michele,

    This is a re-occurring bummer in H&N cancer circles.  To believe we have made it through this gauntlet of treatment side effects and misery to be told there is more “to do” is almost unconscionable, but it happens and I am sorry.  The “All Clear” should have been the end to your treatment story.

    I imagine the Extreme Regime of platinum therapy  to have been difficult, I hope not too so.  I want to help steer you in the correct direction, but it sounds like you are receiving good advice and these peskier H&N cancers need to be dealt a final blow by whatever methods your team has.

    You are looking at the best of the best cancer center for H&N cancer patients and I hope you can stop this crap in its tracks (growth) by using the Keytruda and Erbitux, while  developing a plan to move forward quickly and efficiently.

    There are H&N members who log on here on regular bases, who are or have been trying these newer treatments.  I have read on here where they say they will stay in contact with the form for just your type of questions. I will maintain a positive disposition for someone to check-in.  Your ability to travel for treatments is good.  I hope your current doctors come up with a sound plan and you can feel more confident and secure.

    Matt

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