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Tissue/Organ donation

Discussion in 'General ME/CFS Discussion' started by August59, Nov 18, 2012.

  1. August59

    August59 Daughters High School Graduation

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    I'm going to have my right main cervical lymph node removed that has been swollen for at least 6 weeks and probably longer as my ENT doctor found it by accident. Along with that lymph node he is also going to remove the attached tonsil that has a severe long standing case of tonsilitis. Two different antibiotics barely made a difference. He is going to go ahead and remove the left tonsil too although it is okay at the moment.

    Would any of you know a researcher or doctor that might want part oh these for research? Just thought I would ask Thanks
     
    Little Bluestem likes this.
  2. August59

    August59 Daughters High School Graduation

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    Just an FYI - My right tonsil that was removed had a high concentration of the HPV virus. I have never been tested for it and it has been 12 years, yes 12 years since I have been intimate with any woman. Talking about to explode!!!! Probably dried up into dust > Pufffff

    The oncologist said it is getting close to 80% of adult population has been exposedmy. The good thing, according to oncologist is my lymph node should melt away like sugar as they have found that the squamous cell carcinomas that are associated with HPV have a very high rate of complete remission and is very unlikely to reappear after treatment.

    I still do not like the idea of having 35 - 37 doses of radiation.
     
  3. equestrian111

    equestrian111

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    Wow. What made them look their for HPV? And in the lymph nodes. I have had 2 bouts of it 20yrs ago and then 10 yrs ago. With women it shows up..with most men there are no symptoms. Men can just be carriers. I too am terrified to have sex and get this back. Last time took 6 mo to get rid if it and had to use an acid and burn it out...ouch. they also tried liquid chemo. Wonder if it has anything to do with my cfs. Not even sure if I mentioned it to drs. Dr also told me 10 yrs ago that .80% of women over 50 have it.
     
  4. August59

    August59 Daughters High School Graduation

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    My lymph node that is attached to my tonsil which is normally 1cm is swollen to 3cm. About 2 weeks after we noticed the lymph I got severe tonsilitis in the right tonsil only. I tried 2 different antibiotics over 3 weeks time and it only worsened. My right tonsil was 4 times the size of my left tonsil.

    They almost decided to surgically remove the lymph node and I'm still not clear on the reason for radiation treatment over surgical removal other than radiation treatment is going to provide a higher level of confidence that all cancer cells will be destroyed, where as surgery may leave some behind and may end up doing radiation anyway. getting the radiation 5 days a week for 7 weeks is going to be a feat in itself for me, but the treatments only last about 15 minutes. They are pretty sure I will lose 1 of my smaller salivary glands. All I can say is that I must have been the virus for a long, long time. I don't believe it is a curable virus and once you have it you always will.

    I wonder why it is not tested for like other viruses that we have because it is a very wide spread virus now. They put just as much imphasis on teenage boys getting the vaccination as they are teenage girls now.
     
  5. snowathlete

    snowathlete

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    Interesting. Since getting ME I have a couple of small warts on my hand which I understand are probably caused by HPV. I understand there are many variations of the virus and that its common.
    I suspect it may be related to whatever ME has done to my immune system.

    Sorry to hear you have to undergo the radiation therapy. I hope it's not too bad.
     
  6. taniaaust1

    taniaaust1

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    Best luck with the radiation therapy. My daughter had issues with HPV she caught from me when I gave birth to her.. she ended up having about 16-18 surgeries due to it for years from the age of about 4 years old (cause it was going to block her airways as it was growing in her throat very fast and was putting her at a cancer risk).

    Once you have caught this virus you always carry it even if it isnt manifesting in skin symptoms at the time. It can flare up at any time again when the immune system is under stress but a healthy immune system will keep it in check.
     
  7. August59

    August59 Daughters High School Graduation

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    They are completely relooking at it being a virus that is only sexually transmitted. It can possibly be much more casually contracted at even looking at just skin to skin contact, drinking after someone. There are over 200 varieties of the virus now, still #16 and #18 are the major cancer causing varietes in the throat. There are several that can occur on the skin and it is almost invisible to the naked eye.

    They do know it is strongly related with tobacco and alchol use, but they cannot pinpoint as to how. Was also told that someone peole with a healthy lifestyle and strong immune system can kill the vurus off completely, while the average person only sends into a state of dormancy, but determination as to how long.

    This another virus that should be looked at in our situations because the understanding of it is changing very rapidly, along with different varieties or strains of it. I have not heard anything about how accurate the testing is for it.

    All I can say is check your lymph nodes under your jaw and keep an eye on your throat for consistent soreness. If you have your tonsils i will probably hit one of them first. My oncologist did tell me that if you have your tonsils only one of them will become infected with cancer. It is something like 95% atypical, but they went ahead and took both of my tonsils out anyway and pathology confirmed that only one tonsil had HPV #16 Squamous Cell Carcinoma and it was classified as T2-N1-No (or something like this)
     
    Wayne likes this.
  8. August59

    August59 Daughters High School Graduation

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    I had a lymph node right up under my right tonsil that inflammed to about 3x normal size and was very firm. They did a Fine Needle Aspiration, but it was inconclusive. It wasn't 2 days after they did that FNA that my right tonsil went all to hell. It swelled up and was covered with the white pockets and we tried clindamycin and Keflex without any results. By then the tonsil was turning gray and started bleeding real easy.

    The reason that they had it checked for HPV was the presence of HPV doesn't call for the addition of chemotherapy since it responds so well to radiation. If HPV had no been there I would have had to take cisplatin (I think), but got lucky and din't have to.
     
  9. taniaaust1

    taniaaust1

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    Thanks for sharing. My daugter had it concentrated on her vocal cords so had to keep having high risk surgery on those (it was a worry as there as a risk they'd be damaged so that she'd never be able to talk). I did thou get told she had very large tonsils and adnoids..so I wonder now if she may of had it there too.

    When I got pregnant with her.. the HPV went very very bad (my body couldnt keep it at all in check.. all another reason why I think there was something wrong with my immune system way before I got ME/CFS)... this has happened to me in both my pregnancies. (With one of the pregnancies the doctors wanted me to abort so they could better treat the HPV warts as they said it was putting me at a higher cancer risk as they went into my cervix).

    http://en.wikipedia.org/wiki/Human_papillomavirus



    That makes sense that it could of been transmissionable from her saliva seeing it was so bad in her throat... your post is the first Ive seen ever say that.

    Seeing most HVP cases are cleared up by the immune system.. I really fear my daughter having issus with HVP for so many years.. probably means that she has some kind of immune fault too which could predispose her to ME/CFS. Something must be wrong with her system.. like it must be wrong with my own.

    I never was told what strain of HPV it was.. I thou have had outbreaks of what was thought to be HPV on the roof of my mouth too which happened 2-3 times last year. (maybe Im carrying several strains of it??). My CFS specialst said he wont treat these outbreaks unless Im having 6 or more a year. (I really think I should be on antivirals).

    Most people nowdays have HPV or are carriers of it who may never get signs they carry it..
     
  10. Wayne

    Wayne Senior Member

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    Hi August, I really didn't know all that much about the HPV, so have found your posts quite interesting. Pretty sobering, and something to be watchful for. Thanks for posting your experiences and what you've learned.
     
  11. August59

    August59 Daughters High School Graduation

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    I had never been tested for it and I didn't think I needed to be because I was married for 20 years. The last 8 we were estranged and had very little contact even though we we living in the same house. No sex of any kind and she has been gone for over a year and I still have not been intimate in the least way with anyone.

    So, when did I contract it. Most people with a healthy fuctioning immune system usually gets rid of within about 2 years as far as they know.

    It is always transmitted from mother to child if mother has it, but child usually gets rid of it early in childhood when immunity gets really strong.

    So here is another little unknown virus that has little known about it except for the last few years and that information has come into question now. I believe it hasa hundred or so variations with 16 and 18 being the worst. However, if you develop a squamous cell carcinoma that is infiltrated with this virus it is much more responsive to treatment, especilly radiation. Radiation seems to really melt it away quick and they very rarely us any chemotherapy.

    There is always a new possible piece of the puzzle showing up. I intend on doing some more research as soon as I get a chance.
     
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