Clinical trials

catfish_58
catfish_58 Member Posts: 138 Member
in Head and Neck Cancer #1

Sorry haven't bee on here for a couple years, been battling a ulcer, cancer on base of tongue, have been doing things like immunotherapy, then when that stopped working tried a clinical trial of high intense radiation treatments, that's kinda where everything gets crazy, mainly because the radiation caused lots of problems, first had Trismus set in on jaws, then had to get peg tube lost 40 pounds, couldn't eat, then the ulcer wasn't healing but was told by doctor that there was no more cancer, then had to wait for about 3 more months and then they started me on Hyperbaric Oxygen treatments, did 30 dives, that didn't help, then went back to doctor and was told that the cancer came back and was slowly eating my tongue , I am now here at MD Anderson just had a tracheostomy done and today I have an operation called embolism or something like that, it's to block the bleeding in my tongue to keep me from bleeding down my throat which could be fatal, the main question now is they are saying that I was eligible for a clinical trial called photosynthesis laser immunotherapy, has anyone seen or heard of this and what is the pros and cons of any? Just wondering if anyone has had this, said it was started in 2015? Appreciate all info thanks 

Comments

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #2
    Sound like you're having a rough go of it....

    Sounds like photodynamic medicine...  The link below is pretty sciency but its current (2020) and pretty comprehensive.  Basically, using a photosensitizer (sometimes using nano-particles) to invade the cancer cells and then using light (laser) to activate and initiate cell death.  It lists maybe a half dozen institutions doing trials with it for head and neck...but I didn't see MD Anderson on there, surprisingly.  But maybe it's not exactly the same.  Pros - cutting edge technology, possibly being part of a huge medical discovery, care for trial patients is typically very good because of the extra personal attention by providers and support staff...  Cons - only one, which is that there isn't a more generally accepted option for your care.

     

    Best of luck.

     

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7601252/

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #3
    Catfish

    I am sorry you are going through such a difficult time but urging you to think positive. I have never heard of this but found a web page describing its use and it sounds like a good concept. here is a page from the National Cancer Institute explaining it  https://www.cancer.gov/about-cancer/treatment/types/surgery/photodynamic-fact-sheet  

    I would say if your medical team feels confident in the treatment and feel it's right for you and you have confidence in your doctors you may want to try it. It may be right for you and you are helping advance a new treatment option. Of course, the decision is yours. I can't seem to find a lot of info on it except things like the link I posted and technical reviews by clinical folks which I can't understand. Wishing You The Best-Take Care-God Bless-Russ

     

  • catfish_58
    catfish_58 Member Posts: 138 Member
    edited April 2021 #4
    Photo immunotherapy

    Just got info delivered yesterday and was told it was called photo immunotherapy, sorry about that description of treatment, signed paperwork and sent it back in, Looked it up and seems to be encouraging 

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited April 2021 #5
    catfish_58 said:

    Photo immunotherapy

    Just got info delivered yesterday and was told it was called photo immunotherapy, sorry about that description of treatment, signed paperwork and sent it back in, Looked it up and seems to be encouraging 

    Yes it Does

    Sound encouraging as I have read about it since you mentioned it and before that, I never heard of it and if you click on the link in my post right above you it tells quite a bit about it-Take Care-God Bless-Russ

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