Radiation Necrosis in the throat and neck

jkinobay
jkinobay Member Posts: 298 Member
edited December 2022 in Head and Neck Cancer #1

TORS tonsilar cancer surgery in May, 2022, 30 IMRT's completed Aug, 2022. Had SCC in left tonsil/lymph nodes in 2007. Minor surgery, 35 IMRT's, 7 weekly Cisplatin treatments. LEFT SIDE IS STILL NED. However, there are parts of my neck and throat that received parts of all 65 IMRT's from both events.

First post-treatment PET scan Nov 21, 2022. Identified a "new" area away from the original tonsil tumor. ENT thinks it is necrosis with some bone exposed. Has anyone else experienced this? What does the future look like in this case? The ENT was vague, said very little can be done. In my case surgery is not an option because of all the cumulative damage of all 65 IMRT's. He says hyperbariatric chamber treatments offer little success. He has prescribed Pentoxifylline 400mg ER Tablets which he says may help increase blood flow to the area and slow the advance of necrosis.

I would be very interested in any of your comments about treatment, meds, what to expect, etc.

BTW. I am a 73 yr old Male.

Thanks,

Jim

Comments

  • Windmill
    Windmill Member Posts: 28 Member
    #2

    G’day Jim I had necrosis where the cancer was at the base of my tongue. At first they kept an eye on it and then my oncologist prescribed the same drug and vitamin E. After two scripts this treatment worked a treat.

    Good luck

    Gary

  • jkinobay
    jkinobay Member Posts: 298 Member
    #3
    https://csn.cancer.org/discussion/comment/1701848#Comment_1701848

    Thanks for the quick reply and great news. How much Vit E did you take? And the med, how many times a day? But you saw positive results in what, a few weeks or months?

    BTW, mine ,is near the base of tongue as well.

  • Windmill
    Windmill Member Posts: 28 Member
    #4
    https://csn.cancer.org/discussion/comment/1701849#Comment_1701849

    G’day Jim,

    I can’t recall how much of the drug I was taking but it was one tablet a day. That goes fro the vitamin E as well. After the two courses my oncologist was very happy with the results. We compared pet scans before and after and it was like chalk and cheese.

    Gary

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #5

    Hello, Jim, it sounds like Gary had success with the same drug you are prescribed taken along with vitamin E. This radiation and treatment gets rid of the cancer but creates its own problems down the road. I am hoping this drug clears everything up for you like it did for Gary.

    Wishing You the Best

    Take care, God Bless-Russ

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #6
    https://csn.cancer.org/discussion/325934/radiation-necrosis-in-the-throat-and-neck

    Hi Jim,

    Not meaning to sound negative, but I would like to share my experience with jaw necrosis. My radiation and chemo for tonsil HPV 16 started in July 2017. Necrosis started to show up in March 2021.

    I have been dealing with this for almost two years now. I started with the Pentoxifylline, vitamin and antibiotics. I graduated to debriding, which was not too bad. Then I went with the hyperbaric chamber and then tooth removal and more debriding. My latest adventure ( Dec 1st) was a removal of 1/4 of my jaw bone, trying to smooth it out enough to help it heal itself. All to avoid jaw replacement surgery. Has it been worth it? Time will tell. This last two weeks have been a huge challenge, but I know I have done everything I can to avoid major surgery.

    I have no words of wisdom, but just keep on trying everything. I have had lots of pain free times so it hasn't been all bad. Just frustrating. My advise, keep trying everything! You never know what might work for you. I have tried it all, so if you have any questions.. reach out.

  • jkinobay
    jkinobay Member Posts: 298 Member
    edited December 2022 #7
    https://csn.cancer.org/discussion/comment/1702265#Comment_1702265
    https://csn.cancer.org/discussion/comment/1701866#Comment_1701866

    Thanks Russ. I do as well.


    I hope you and your family are well.


    Take care



    Jim

  • jkinobay
    jkinobay Member Posts: 298 Member
    #8

    Thank you for sharing your experience. Very sorry to hear of your difficulties.

    Found out recently that I had an abscess under my right jawbone. Turns out it was huge. I eventually erupted on it's own and drained an incredible amount of fluid over a period of a week or so. Just now finishing up the 7 day antibiotic prescription . It appears to be healing nicely, inflammation greatly reduced, skin color back to normal.


    I tell you this because we are now convinced that what one Radiologist described as necrosis was not necrosis. It was the hotspot created by the abscess saturated with the radioactive glucose. Almost has to be. Take a look at the pic I have attached.

    Patiently waiting for another PET in a month or two to confirm that the hotspot is gone.


    So, hopefully necrosis is not advanced at this point but I of course fear it may be.


    But your experience with the pentoxifylline 400mg was that it was noticeably beneficial? I tried it for a few weeks and it seemed to affect my blood pressure, though maybe coincidental. So I have temporarily stopped it as a test.


    Thanks again, hope you see great progress and soon. Best of the Holiday season to you and your family.

    Screenshot_20221121_184914_Messages.jpg


  • debbiel0
    debbiel0 Member Posts: 134 Member
    #9
    https://csn.cancer.org/discussion/comment/1702271#Comment_1702271

    I have not had a great experience with the Pentoxifylline. I found them large and hard to swallow, and they made me queasy. I did preserve for a couple of months. I dont see any difference, same with the hyperbaric chamber, was it worth spending thousands of dollars to spend two months out of town, in a hotel ( in the most expensive city in the province!) I dont know for sure, but I do know that I did what the experts recommended, and I had three opinions.. all advising the same course of treatment.

    I have had several CT scans, and the necrosis is definitely there. We are now hoping to heal the bone so it does not break.

    I wish for you only good news from here on! And hope your course of trearment is successful.

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #10
    https://csn.cancer.org/discussion/comment/1702265#Comment_1702265

    Hi, Debbie. I am sorry to hear you are dealing with this and 2 years is a long haul but I am hopeful that this last procedure will get rid of this problem for you. You have endured a lot and I pray that this clears up and heals well now. You are right you have done all you can and kept watch on this thing and stayed on top of it so there is no negligence on your part. This is the constant fear and apprehension we H&N people have with us all the time that the next tooth extraction is not going to heal up properly and we get necrosis. I too went through Hyperbaric treatments about 2 years ago when I had a tooth that needed extracting on my lower jaw, molar. Thankfully it healed well and I recently had another one extracted on my upper, a front off-center tooth. This was the one side of the anchor to my partial. I have an appointment in early January for a follow-up and he wants to make sure it is OK. So far I think it has healed well thankfully. But like I say for us H&N people every time a tooth breaks or gives some sort of a problem there is always this fear that goes along with an extraction or for that matter anything connected with dental work.

    I have put you on my prayer list, Deb.

    Wishing You the Best

    Take Care God Bless-Russ

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #11
    https://csn.cancer.org/discussion/comment/1702286#Comment_1702286

    Thanks Russ! I am ok with it all. I have come to the realization that life is what it is! Take each day in stride, enjoy the good times, dont dwell on the bad or the past. I have come a long way in the past few years, with my outlook on life, friends and family. Out of everything bad, we can find a shining light! Right?

    It has taken me 67 yrs to get to this point , but am thoroughly enjoying my life, even when its painful! I am grateful for everyday I am on this side of the grass! I have love and joy from family and friends. What more does a girl need? ! Thanks for the extra prayer.. cant hurt! 😁

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #12

    I agree with what you say, Deb, I don't dwell in the past and don't worry about another cancer or some other illness. You can't live in fear of what might happen. I also agree with you that once you go through a cancer episode we are so grateful for each day and the smallest things are a pleasure to us. Many on here have echoed that sentiment.

    Take Care God Bless-Russ

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #13

    God bless , you! You are a saint looking after all of us with your words of wisdom, encouragement and faith. Your dedication to all of us on this forum does not go unnoticed! We appreciate you and need you.. 💕

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #14

    Debbie thank you for the kind thoughts, I am glad if I can help other folks to make their situation easier. But I have to give all the credit and the Glory to God, he gives me the abilities and is the reason I am still going.

    Take care, God Bless-Russ

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #15

    Update.. went to specialist on Thursday. He sent samples of bone, tissue and infection to the lab when he did the bone removal. Turns out, that the bacteria in my wounds is of the rare variety ( yes I am a very special person !) So he switched up my meds.. hope they work! Labs are still not back on line and tissue.

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #16

    Wow, that's great that they are even narrowing down the specific infection and tailoring treatment to that particular strain. It sounds to me that you are being cared for by a very competent specialist and they are doing their best to give you a great outcome-Prayers continue-Take Care God Bless-Russ

  • jkinobay
    jkinobay Member Posts: 298 Member
    #17

    That is great news, that they are "hot on the trail". Best of luck and a Very Happy Holiday Season to all.

    Jim

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