1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

Have I got Non-Hodgkin's lymphoma?

Discussion in 'Immunological' started by RustyJ, Sep 2, 2012.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    961
    Likes:
    440
    Brisbane, Aust
    I am a little concerned about a couple of new symptoms. I have had me/cfs for 20 odd years. In the last few weeks I have developed itchy legs, below the knees, and periods of overheating at night. Oddly there is no rash or raised skin on my lower legs even after scratching quite fiercely.

    Half way through last year I lost 6kg (almost 10% of my body weight) without any change of diet, and I haven't been able to put any back on.

    I don't appear to have a fever (at least I don't think so) but I have read that it is not necessary.

    I have a lymph node behind one ear which is swollen most of the time, and it has been like that for over 18 mths.

    My sweating is not great amounts of sweat, but intolerable heating where I have to throw off the covers for half an hour till it settles down.

    Itching on the lower legs appears to be a classic symptom of NHL, so I am a little concerned and wondering what to do next without appearing to be overly dramatic. My other concern is any added expenses. I would appreciate any response to my symptoms and avenues of testing etc.

    I have read some the available research which seems to question any link between me/cfs and NHL, but I realize that any research is questionable.
  2. Kati

    Kati Patient in training

    Messages:
    2,006
    Likes:
    1,413
    Hi Rusty, from my knowledge as a chemo nurse, itchy legs has not been a classic symptom of NHL. Drenching sweats can be one symptom, and bulky or non-bulky tumor usually from lymph nodes, thoracic, abdominal, neck are the most common area. However we know that lymph node swelling can be present for patients with ME.

    We also know that patients with ME have an increased risk for NHL.

    The best thing you can do is to address these concerns with your doctor, they are valid concerns. The least he can do is perhaps a hematology and chemistry panel, a chest x-ray and a physical exam.
  3. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    961
    Likes:
    440
    Brisbane, Aust
    Hi Kati, thanks for replying. There are quite a lot of references on the net to itching as one of the B symptoms, and in particular on the lower legs - commonly called the hodgkins's itch.
  4. Kati

    Kati Patient in training

    Messages:
    2,006
    Likes:
    1,413
    Thx Rusty.

    i wanted to add that confirmation of lymphoma is done through a biopsy.
  5. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    27
    Hi Rustyj,

    Sorry to hear of this problem you are experiencing. If the symptoms are worse at night, that is a tell tale sign of scabies infestation:
    http://www.medicinenet.com/scabies_pictures_slideshow/article.htm

    These mites are hard to diagnose and get rid of. They are often missed and diagnosed as something else. If an experienced M.D. scrapes your skin, looks under a microscope, and "finds the mite" (usually just pieces like a head or legs), the diagnosis is conclusive and you will be prescribed some harsh topical poisons for treatment.

    They can develop over time as your immune system is overwhelmed by the systemic effects of the toxins in their saliva. They are common with AIDS patients. Typically a patient only has less than a dozen mites on her body, but the systemic poison makes it seem like there are lots of them over a large area. Untreated, the itching can drive a victim bonkers. Initial treatments often fail due to lack of patient information and adherence, and some folks remain infested for years in a state of misery.

    If you have no $$ for doctors (best would be a dermatologist), you can do a test by taking a hot bath at night, and looking at the skin on your legs. If you press a pink patch of itchy skin and it responds with whiteness under the area for a second or two, you might be infested. Then you can try boiling all your clothes and sheets, change sheets every day, and cut your fingernails to the quick. If the itching improves, that will tell you something. You should stop scratching with your fingers because the eggs are spread from the stuff under your fingernails. I would rather have lymphoma I think ;-) Good luck!
  6. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    961
    Likes:
    440
    Brisbane, Aust
    While I can't rule out scabies of course, as I said in my first post, my legs are completely free of rashes, marks, bites etc, even after vigorous scratching, which seems to indicate a non-allergenic source.
  7. Kina

    Kina Moderation Team Lead

    Messages:
    5,536
    Likes:
    4,077
    Ontario, Canada
    Hi RustyJ.

    This is something that you should be investigating with your doctor because really only clinical tests will (or might) discover what is going on. If you spend a lot of money and find out it is not Non-Hodgkins Lymphoma at least you will have ruled that out.

    I wish you the best of luck. Please let us know your progress.

    Kina.
    taniaaust1 likes this.
  8. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

    Messages:
    699
    Likes:
    239
    US
    > I am a little concerned about a couple of new symptoms. I have had me/cfs
    > for 20 odd years. In the last few weeks I have developed itchy legs, below
    > the knees, and periods of overheating at night. Oddly there is no rash or
    > raised skin on my lower legs even after scratching quite fiercely.

    Hi, Rusty. As you know, those symptoms are non-specific and are generally telling you that there is something wrong with immune signalling. That could be true for lymphoma, or for the leukemia that is most like lymphoma, which is Chronic Lymphocytic Leukemia (CLL). Or from other cancers.
    e.g. http://www.clltopics.org/DC/BSymptoms.htm

    But first you'd have to look at the probabilities that cancers are the least likely cause. That should be a little reassuring.

    >
    > Half way through last year I lost 6kg (almost 10% of my body weight)
    > without any change of diet, and I haven't been able to put any back on.

    Cachexia wouldn't halt, it would go on and on. I'm interpreting your words as meaning that your weight has been stable for months. You might just have had something hormonal going on. Or quite possibly: histamine effects, which also create itching, etc.

    >
    > I don't appear to have a fever (at least I don't think so) but I have read
    > that it is not necessary.

    Correct, in fact no B-symptoms are necessary for lymphoma to be present; there might very well not even be anything unusual on a CBC; there often are zero symptoms at first, for many months.

    >
    > I have a lymph node behind one ear which is swollen most of the time, and
    > it has been like that for over 18 mths.

    What's the size and shape? Reactive nodes are enlarged but still bean shaped. A long oval would be a bad sign. Being movable is a good sign. Being hard is not a good sign, being rock hard is a sign of metastasis. Cancerous nodes are almost never painful, since the cancer grows right through the node's capsule whereas reactive nodes push against the capsule and cause pain. If the node has been very painful: do you have a cat?

    Is the node divided at all? Any irregularities?

    All of those are indications and are not definitive of anything.


    Did you have any ear problems before or during the time that the node enlarged? That tends towards being reactive.

    Did you thoroughly check neck, underarms and groin for more enlarged nodes? You might as well also check Virchow's node, supra left clavical.

    You can't at this point even be sure it is a node, it might be some other primary cancer; or it might be lipoma, or cyst. But it probably is a node, or maybe lipoma.

    >
    > My sweating is not great amounts of sweat, but intolerable heating where I
    > have to throw off the covers for half an hour till it settles down.

    "night sweats" are drenching by definition to where you have to change clothes, but that's not necessary to indicate lymphoma

    >
    > Itching on the lower legs appears to be a classic symptom of NHL, so I am a
    > little concerned and wondering what to do next without appearing to be
    > overly dramatic.

    Not overly dramatic one bit, you have enough valid reason for concern.

    > My other concern is any added expenses. I would appreciate
    > any response to my symptoms and avenues of testing etc.

    To start, the least expensive would be an LDH blood test, possibly showing increased cell turnover. A physician looking at the node is helpful, but not definitive.

    A gray scale sono can tell a lot. The presence of a 'fatty hilum' almost always means a node is benign. OTOH, if the internal structure (architecture) is effaced, that's bad.

    A color doppler sono can show the blood flow from angiogenesis - new arteries grown to feed a tumor.

    Some docs would want an MRI instead of a sono... IMO sono is superior for lymphadenopathy - and cheaper :)

    There is a fine needle biopsy, but those are known for false negatives - the needle didn't hit the right spot. A surgeon just kind of pushes the needle in at different spots and pulls back the plunger a little each time. There's no need for guiding by sono or MRI in your case.

    An excisional biopsy is the ultimate, especially in a easy area like yours to get at (not deep nor not much danger of hitting anything vital like nerves, arteries, vocal cords whatever). The resection gives a large sample, plus shows the architecture. A surgeon might see something even during the procedure, if advanced malignancy is present. There needs to be sufficient justification for a resection - plus, nodes after useful and you don't want to lose any for nothing :)

    Testing of biopsy samples starts with a pathologist looking under a microscope for odd looking cells. Next might be flow cytometry to look for surface markers. Then maybe something like FISH for DNA testing, very expensive and often sent away to special labs.

    (A PET scan wouldn't really apply to your situation.)

    >
    > I have read some the available research which seems to question any link
    > between me/cfs and NHL, but I realize that any research is questionable.



    I hope that overview helps somewhat, Rusty. Twenty years of inflammation can predispose to neoplasms, yes. But my guess is that since you already have immune dysfunction, the CFS is what is creating your symptoms. Cancer can be mysterious and do many things, but that's also true for the immune system with all of its cells and cascades... as you well know. Good luck :)
    merylg and RustyJ like this.
  9. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

    Messages:
    699
    Likes:
    239
    US
    P.S. T-cell lymphomas would likely give very noticeable and ugly skin effects. So rule that out.
  10. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    961
    Likes:
    440
    Brisbane, Aust
    A great post. Thank you for taking the time to go into such detail. Oddly enough it was the expense and disruption to my routine that I was more concerned about, rather than the possibility of cancer. In some ways it would be a relief to have something that could be treated.

    My own reading seems to confirm a few of the things you said. Hodgkin's itch does have a rash, and the sweats are drenching.

    The lump behind my ear is hard, sometimes unnaturally sharp or pointy or small ridge, other times it is smoother but still hard and coming to a central nub (sorry for the less than scientific terms}. At times it appears to go away. There is swelling for a centimetre and it doesn't move or float and feels like it is part of the ridge of bone behind the ear. I have no other physical symptoms of note, other than a few years ago the ridges of gristle in the same ear went all rough and bumpy for maybe twelve months. It is back to normal. I have the usual cfs sensitivities to loud noise, or any noise for that matter, but there appears to be no other functional irregularities.

    Next time I visit my GP I will ask him to take a look at it, if it is inflamed. As a rule I am very cautious about referring to cfs or to vague symptoms to GPs.
  11. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    961
    Likes:
    440
    Brisbane, Aust
    Thanks to everyone for their replies. Yes, even your unwelcome contribution Levi. :) I will now be breaking out in cold sweats wondering if every time I itch there are scabies about.
    merylg likes this.
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,985
    Likes:
    4,960
    Sth Australia
    I second what Kati has said with this. One of the well known ME specialists has said that ME has an increased risk of NHL (sorry Ive forgotten which well known ME specialist has said that)

    Most of the research has been doing on CFS defined patients and not the ME subgroup in which Im sure more cancer would be found, if what many of the specialists who are treating mostly the ME patient group are right about what they are finding with their patients.

    All I can say to your symptoms is that it isnt unusual for ME/CFS patients to get weight loss (or go the other way and get weight gain). I used to have a lot of problems with overheating (for no reason) such as you describe during the night. That symptom may be being caused by the autonomic issues found in ME.

    If you are worried about new symptoms.. you certainly thou should talk to your doctor about them.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    remember herpes viruses sit in our nerves and can cause strange types of symptoms like pain and other abnormal sensations. I also think rib pain can be caused by this as there are plenty of nerves around the ribs etc and is a common site of another herpes virus shingles.

    cheers!!!
  14. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

    Messages:
    699
    Likes:
    239
    US
    Aha, I'd somehow envisioned something about an inch across. With yours being smaller, and the ridges coming and going, without any previous infection inside the ear, that could change everything. But it's too difficult without seeing. At this point, I'd think it might be a subcutaneous granuloma (annulare?) - which ironically is not too far off from what Levi suggested, though with maybe some other organism at the center. A granuloma occurs when the immune system cells wall off some invader that can't be killed off. If it's attached to the bone that protrudes right behind the ear, that would make it immobile. With CFS immune dysfunction, it might even be some rare autoimmune cause.
  15. leela

    leela Slow But Hopeful

    Messages:
    2,402
    Likes:
    2,864
    Couchland, USA
    Parasites in general can cause the symptoms you explain.
    Lyme and Co's can also cause them.
  16. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    961
    Likes:
    440
    Brisbane, Aust
    Hi leela, I have had a lot of exposure to ticks and can't rule out lyme. There is no reliable testing in Australia, let alone good treatment. Of course the authorities over here deny it exists. I am considering starting a course of antibiotics to target lyme. I do have access to a cfs doctor who is favorable to trying a few things.
  17. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    Rusty, unexplained weight loss should always be referred to a doctor.

    Go to your doctor. Dont attempt to self-diagnose,

    This symptom ought to be taken seriously by your doctor, there is no need to bring in ME/CFS into the conversation, if that is what concerns you.
    Just go and get some routine tests done to get cancer (of any kind) ruled out.

See more popular forum discussions.

Share This Page