Ding Ding - Ringing the Bell - NED


4 Nov - PET scan six months post treatment. My first scan. Prior to this my radiation oncologist and ENT limited the follow-ups to scoping. The tumor had responded well to treatment (32 hyperfractionated doses plus 3 Cisplatin). My original diagnosis was Stage 4A T2N1-2aM0 Moderately invasive squamous cell carinoma of the (L) base of tounge, glossopharyngeal sulcus and (L) tonsilla pillar. I was hospitalised three times during treatment, first time was for fever and body rash about 10 days after my first chemo. I was dosed up with a whole lot of anti-biotics which caused my second hospitalisation the day of my second round of chemo. I go home from the hospital having had two radiation sessions and 7 hours of chemo and two hours later my temperature spiked at 102.8 and I was rushed to the emergency room. I was found to be in severe sepsis in danger of going into septic shock. Spent 3 days in ICU. They found that I had a raging CDiff infection. CDiff being a hospital bug that likely got a foothold in my body because of the general antibiotics I had previously had. Apparently CDiff can be adequately handled by a healthy body but some antibiotics actually inhibit the body's ability with that particular bug. This caused a two day halt in my radiation treatment. The third hospitalisation was for aspirated pnuemonia. The combination of tumor and the radiation caused the closing flap on my windpipe to not seal correctly and I was getting gunk in my lungs which settled and made me ill. I survived that and managed to not miss any more radiation. My last radiation was May 6th. My recovery has been like most I have read on here - mucus, magic mouth wash, dry mouth, absent taste buds, neck stiffness, fatigue and the battle to put weight back on. Lost 30 pound but am now back to near my start weight. Feeding tube was removed about a month and a half ago. I am surviving on Boost nutrition drinks. All my teeth were removed prior to me commencing radiation. I am now awating insurance approval to commence HBOT ahead of getting oral surgery to prepare my mouth for either dentures or implants. The reason I can do this is that I received results and the clearance from my radiation oncologist for the HBOT. TWO BIG THUMBS UP!!!! NED. 


  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited November 2016 #2
    Very Great


    What an ordeal. 

    Congratulations across the board, you have a well deserved NED!

    Good luck on the HBOT and the issues moving forward.


  • armana
    armana Member Posts: 97 Member

    Sounds like you have been throuh hell during treatment. I pray for many more NEDs.

  • Bill_Litchfield
    Bill_Litchfield Member Posts: 19
    edited November 2016 #4

    Thanks guys, I see an oral surgeon Monday, Nov 21 and hopefully HBOT will commence shortly thereafter. The HB center is holding a slot for me and awaiting approval. I will let you all know how it goes.


  • T3rri
    T3rri Member Posts: 23
    Wishing you the best

    Keep us informed on your HBOT. Sounds like the journey has been rough, but now there is a light at the end of the tunnel. We will keep you in our thoughts. 

  • Bill_Litchfield
    Bill_Litchfield Member Posts: 19
    HBOT Progress

    Hey All, Completed first five dives last Friday, Dec 2 on my way to 20 dives pre-surgery. My employer has been great. I have Mon/Tue off, I work 4am to 12noon Wed-Fri which allows me to do my HBOT each afternoon. Acutally, can be quiet restfull and I nap for most of the time. I also work normal hours Sat and Sun. This is a financial relief for us as we are saving to cover my deductible and copays in the new year. I complete my pre-surgery dives on Dec 23. I hope to have my procedure on Wed, Dec 28 and recommence HBOT for 10 post-dives on Dec 29. Unfortunately, this means that at least 8 dives will be in the new year and I will have to pay. This year I maxed out-of-pockets, three weeks after my diagnosis in February. We re-fied our house to survive but don't have this option next year. But, having said that, the medical bills are not going to be like the avalanche we faced last year.

    Just an update. Probably come back after I have had the surgery.