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Lymphoma as ME result.

Discussion in 'Immunological' started by Eucalypta, Nov 17, 2011.

  1. Eucalypta

    Eucalypta Guest

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    lala-land
    Is there anyone who had to deal or is dealing with a Lymphoma or Leukemia cancer after having ME for years?

    My ME started in 1970 with a nasty case of Epstein Barr. I was pretty ill with very high fevers that just wouldn't go and was hospitalized for 4 months. At that time I lived in the Netherlands. I was 18 years and never recovered. The Epstein Barr diagnose went to Chronic Epstein Barr, to Severe Chronic Epstein Barr Virus which later was put under the ME umbrella. In the 1980's I received the diagnose ME, which was at that time a recognized illness in the Netherlands. Looking back it is insane how this all changed.

    After moving to Oregon in 2005 and becoming bed/home bound, one of my main pain complaints was the horrible disabling pain in my spinal cord and legs. The spinal cord pain is because of the inflammation caused by viruses. A few months ago I started to feel painful hips, I contributed this to my immobile being and maybe even arthritis in my hip joints. However a month ago a swelling started to form not exactly on my hip as well on the side on my thigh. The pain became hard to deal with. This swelling was very very painful, nothing muscular but a feeling of my leg bone was hurting really much, so much that it keeps awake and it's impossible to lie on at night. Than my other side also a swelling is started to form, hard unmovable swelling. Yesterday my doc urged me to get a CT scan, his first thought after examined it was Lymphoma.

    We are very diligent in testing me every 2 months or so to check on my white blood cell count and other cancer markers in my blood because I have such a high EBV count that won't go down. Up till now nothing specific showed up. Waiting for the results from yesterdays' test. I'm very lucky that we have a phlebotomist in the office that, over the years, knows me and my veins very well ;-) So I don't have to go somewhere else, very grateful for that.
    I'm still in shock, even though as a high EBV or CMV ME patient you keep the chance of Lymphoma or Leukemia in the back of your head, when it is a possibility it actually happens to you you're in shock. At least I am.

    I think it would help if I could hear from others who had to go through this and how they dealt with it. Feel free to contact me in private or here in this thread.
     
  2. Eucalypta

    Eucalypta Guest

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    lala-land
    Replying to my own thread in the hope that someone picks it up.
    Is there really no one of the long term ME patients who had a cancer scare.
    Am I really the only one? I remember Dan Peterson saying that a large percentage of his patients got Lymphoma as result of high EBV figures.

    Cancer is scare but it's even more scarier if you are the only one and can not find support. Cancer groups are not a match for me, they are all healthy(besides their cancer). I would mean a lot to me to know how others dealt with this.
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Its definately a risk factor for cancer as nk dysfunction is commonly found and nk cells kill viruses and cancers. In the book oslers web it describes dr petersons cfs outbreak and others and mentions more about the increased cancers seen in cfs/me patients from that outbreak.

    I also wonder if using antivirals for ebv/cmv/hhv6 lowers these risks of cancers. Also the latest cfs research treatment in norway where chemo drug ritux which destroys b-cells which are possibly infected with viruses is something worth looking into if u have/had cancer, maybe something you would be able to be treated for with a history of cancer compared to others with cfs and no cancer history. You could be sitting on a treatment ahead of others maybe.

    Have u tried antivirals for your high viral count?? or even something to increase your nk function??

    cheers!!!
     
    WillowJ likes this.
  4. minerva

    minerva

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    Seattle, WA
    I did, just got over a terrible cancer scare. I've been sick since 2008. My endometriosis got way worse after I got sick (it was managed with birth control pills before) and I had a hysterectomy. I went in for an annual on Oct 18, gyn found a mass when I complained of some pelvic pain, whole horrible series of events started: blood draws and an MRI and a surgeon. I just, last Friday, had a pelvic lap surgery because of the mass in there. It turned out to be a structural abnormality that the radiogist misread (ugh, and said had been present on two previous CT scans dating back a year -- I pretty much thought I was doomed and was quietly trying not to freak out). Waiting the month for the surgery and being told it might end up being an open surgery with staging was the worst month of my life. Especially when I was told the mass looked more like a "node" than a "tumor." I am so glad I found out I was fine. (Having surgery was awful -- they were completely terrible to me in the hospital, but I guess I haven't come to expect a whole lot more from the medical profession after having this disease so long?)

    If it had been pelvic lymphoma, I was ready to take ARV's. I was so scared it was a complication of my ME. You're not at all alone.
     
    WillowJ likes this.
  5. nwmoll

    nwmoll

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    Oregon
    I don't have any information that would be helpful to you, but I wanted to comment. I agree that your symptoms sound concerning with regard to lymphoma. Hopefully the CT scan will tell you more. That sounds like a scary symptom to have.

    You are lucky to have a Dr. that is so diligent in checking you! I'm wondering if you would mind telling me who your local Dr. is? I would love to find a Naturopath that is knowledgable about CFS. I live in the Portland area, as well, and have had severe CFS for 25 years. I also have developed some symptoms suspicious of lymphoma or leukemia, but my Dr. is not willing to consider it.

    I wish you all the best with your upcoming CT scan, and hope there is another explanation for the swellings you have developed. Though, as "Heapsreal" pointed out, if you could get Rituximab, it might completely cure an early stage lymphoma and dramatically improve CFS symptoms as well. Perhaps a two sided coin.
     
  6. leela

    leela Slow But Hopeful

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    So sorry Eucalypta! Wish I had more to offer. I wonder if it's possible to get in on Enlander's Rituximab study in NYC?
    Also, I wonder if looking into GcMAF makes any sense? We wish you the best--and try not to worry too much, though I know that's easier said than done!
     
  7. taniaaust1

    taniaaust1

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    Hi.. sorry to hear about your cancer scare. I hope it turns out to be a false alarm.

    I are worried about cancer too. I have a couple of indications which have been ignored or which doctors dont know why im like that, which could be pointing to possible cancer (i have skin discolouration looks like the one which can happen along with cancer.. my specialist said the discolouration I have isnt being caused by my insulin issues due to where on my body its occuring but says he has no idea what it is http://en.wikipedia.org/wiki/Acanthosis_nigricans).

    I plan to get a referal to a skin specialist next year to find out why my skin is discolouring. (im dealing with bad BP stuff and minor heart stuff right now first)

    Skin discolouration looking like this can be a paraneoplastic syndrome.
    "A paraneoplastic syndrome is a disease or symptom that is the consequence of the presence of cancer in the body, but is not due to the local presence of cancer cells[1]. These phenomena are mediated by humoral factors (by hormones or cytokines) excreted by tumor cells or by an immune response against the tumor. Paraneoplastic syndromes are typical among middle aged to older patients, and they most commonly present with cancers of the lung, breast, ovaries or lymphatic system (a lymphoma).[2] Sometimes the symptoms of paraneoplastic syndromes show before the diagnosis of a malignancy"

    I first got ME 14 yrs ago and had EBV very bad as a teen.
     
  8. Eucalypta

    Eucalypta Guest

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    lala-land
    I was on Valtrex but had to stop due to cardiac side effects, I had a fungal pneumonia and we're waiting till I'll be back at baseline before starting new anti-virals.

    I inject Growth Hormone every other day to stimulate NK
     
  9. Eucalypta

    Eucalypta Guest

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    lala-land
    Oh what a terrible scare to go through! One pf my nightmares while having a CT scan they 'discover' a whole bunch of other things wrong with me and I end up having 6 dr's. none of them familiar with ME.
    I'm so glad it turned out okay for you. I hope to be as lucky as well!
     
  10. Eucalypta

    Eucalypta Guest

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    lala-land
    I don't mind sharing at all. I think he is the best and deserves a lot of credit.
    His name is Werner Vosloo is original from South Africa.
    Recently, because the clinic is doing so well, he hired another Naturopathic physician dr. Glen Jaroz. Glen has a lot of experience in sports medicine which come in handy where muscles and joints are concerned.
    Dr. Vosloo is besides a Naturopath also a classical Homeopath. He is very open wrt to your input, in fact he expects you to be an active member of the healthcare team. All employees nurses and admin are very warm and welcoming, it's all very casual. he is never pushy, at least not with me about using the brand supplements he has. One thing I do like is the fact that they have their own phlebotomist from Quest, so no need to go elsewhere for blood tests its all done right there and my insurance pays for that. He really gets to know you and knows his patients bad and good veins ;-)
    If you have more questions let me know.
    Anyway here are the details:
    http://restorativehealthclinic.com/our-clinic/doctors/

    Werner Vosloo
    Restorative Health Clinic
    17685 SW 65th Ave Suite 300
    Lake Oswego, OR 97035
    (503) 747-2021
     
  11. fla

    fla Senior Member

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    Montreal, Canada
  12. nwmoll

    nwmoll

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    Oregon
    Eucalypta, thank you so much for name of the naturopath you see. I'm very happy to have it. I've been wanting to see a Naturopath for a long time and didn't know quite where to start.

    I'm not ready to make an appointment with him quite yet, as I have an appointment with a CFS doctor in January, that I want to see through first. But I'm definitely interested in seeing him after that.

    Have you found out anything about the swellings you had? Have they gone away?
     

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