Lymphoma/Leukemia or Nothing?

[tripnstumble]

I'm not even sure where to start with all this. First of all I'm a 40yr old female. I have no idea if any of this is related at all but giving the info. anyhow. When I was 3yrs old (I know long time ago lol) I had large lymph nodes in my neck. I remember very clearly because of how the Dr. wanted to check my temp. haha Anyhow, my mom has a photo where I lost almost all of my hair on the one side. The nodes in my neck went down and my hair grew back and life went on. On and off over the years I'd get sore throats and what I thought were swollen glands. Nothing bad or anything to see a Dr. for and it would go away. In my early 20's I started with fatigue and started seeing a Dr. they kept testing me for Lupus which still to this day is negative. The fatigue went on up until about 37yrs old when it seems all hell broke lose.  My Dr. had assumed by symptoms I had MS. which should give you an idea of my symptoms. My brain MRI was neg. and we're now doing B12 shots and I take Vitamin D since that was also very low. I have in the past 2yrs been tested for everything under the sun! Lymes, Celiac, Hep, HIV you name it.... My lymph nodes in my neck (under my jaw area) are constantly swelling but they do go down, just to swell back up again. This is the only place I have noticed swollen lymph nodes. My last WBC could was high, nothing outrageous crazy high but high enough that she is concerned. I have night sweats, a cough that seems to never leave and yes I am a smoker but even she says it doesn't seem related since my lungs sound clear. Also it is a dry cough. I also from time to time have very bad issues with swallowing. My weight has been up and down over the past few months. I also have petechiae on my one arm since I'm little, from my wrist to elbow (yes it is all over my arm) and have noticed it in other places but only a very little.

Went to the Dr. today and she felt a lump in my left side. So, she wants me to have a neck and chest x-ray, more blood work to check my wbc count again. And see a ENT. Only other thing found in any of my blood work was protein in my urine. And larger rbc's but my platelet count and rbc counts are fine etc.

I know nothing at all about Lymphoma or Leukemia. Can it possibly go on this long??? What type of questions should I ask??? I feel soooo lost. I'm of course not trying to let this bother me and so far have been doing great, but not knowing if we're going in the right direction, what to ask or know doesn't make things to easy :)

Any help would be appreciated.

[tripnstumble]

No I doubt very much on the mold. That is something my husband worries about being in construction he sees it often. We also have no basement for it to be hiding in and our attic is a remodeled bedroom. I mean at least nothing we can visually see anyhow.

After I wrote this is dawned on me with the jolting awake thing. I was taking Effexor at the time, my Dr was hoping it would get my energy level up some but it didn't, just made me crazy feeling when I tried to sleep lol Since I stopped it, I haven't had that terrible feeling.

Dr appt. is this week 23rd so see what she says. If I don't get back with an update I hope you have a great Christmas :)

[Ken_PA]

in this cursed rain-soaked year, is it possible there is some mold where you live that it much worse than in the past few years?

"this terrible feeling that just jolts me awake" Are you aware of sleep apnea?

"these odd patches of goosebumps..." that could be from biochemicals released by your immune system

well good luck, I hope you'll be able to have a peaceful Christmas

[tripnstumble]

The MRI looking for MS was because I couldn't even walk a straight line, had terrible balance, confusion, muscle spasms etc. the pins and needles as well but many things were going on at that time. Lyme has been ran twice now and both times it's been neg. I have gone through times of being very bad to not to bad over the past few years. Sort of wax and wanes every few months. I'm now waiting to see if and when it'll hit me again. I'm still getting the pins and needles but everything else neurological has calmed down. I do catch myself tripping but not sure if it's just me being me or... this other mess of things :) I have been getting B12 shots since it was pretty low, hoping that was/is a lot of that issue. So far this swelling in the nodes/glands hasn't changed, still sore throats and night sweats... WHO knows what the heck is going on.

And yes that is exactly what I'm doing. Trying to enjoy this time I have until it hits me again ughh. Whatever it is hits me in the oddest ways. Even effects my sleep. Such as I'll dose of and within 10-15 minutes I'll have an entire dream and wake up like I slept hours lol I'll start to fall asleep and have this terrible feeling that just jolts me awake almost like an instant nightmare would. Really crazy things. Also get these odd patches of goosebumps about the size of half dollars. Or I'll get them out of the blue up and down one whole side of my body but not the other and it's not the same as if your cold, it's a totally different goosebump sort of feeling.

Not only can I not wait to get all this over with hopefully one day but shesh! I wanna know what's been kicking my butt like it has as well for so long :)

[Ken_PA]

then that is actually methyprednisolone, which is almost the same thing as prednisone - and the dose would likely start at 24 mgs then immediately taper. That dose is not enough for immune suppression but instead would only have the anti-inflammatory effect - plus perhaps overcoming so-called 'adrenal fatigue'.

I'd wonder most about the pins and needles (paresthesia), and want to rule out any neuropathy that might be occurring due to an infection or autoimmunity. That's why the MRI to check for MS, which would have shown up as nerve damage. Chronic Lyme also can result in neuropathy. But what else can they test for? I don't know - except unfortunately to only wait and see what new symptoms might develop.

[tripnstumble]

They had me on the Medrol Dose Pack so not sure what the dose would have been? They tried it at three different times, first two times it helped but the third did nothing at all. It did feel like one week just wasn't long enough. I guess he was worried about side effects, but to be honest with as bad as I was feeling the side effects were the last thing on my mind. I wish I could remember if the swelling went down while on it with the glands/nodes whatever is swollen in there.

I'll see what the ENT had said to her and what she says when I go back and take it from there. Right now the only issue I'm having is fatigue... It's kicking my butt. If I could overcome this I'd feel almost "normal" Other then the night sweats, pins and needles etc. LOL Those things I can deal with.

[Ken_PA]

how mich prednisone were you taking? doses >= 60 mg are used for immune suppression. That leads back to you having an over-reactive immune system. In it were an infection, especially bacterial or fungal, that would have made the infection get worse.

Yes, the immune system is especially complicated and certainly not entirely well understood at this point in history. Consider that it can react to an infection from virus, bacteria, fungus, or parasite. It can react to a harmless substance, as in allergy. It can react to one's own body as in autoimmunity. It can undergo mutation and multiply because it is cancer. All the various and many types of cells can interact with each other.

I'd ask your new doc to try pred again - keeping in mind that there are side effects from long term high doses, such as bone loss, skin thinning, 'moon face' etc. However, prudent diet (low GI) and exercise can help lessen those things.

[tripnstumble]

My first PCP I was seeing when this all started did suspect some sort of viral/bacterial. He ran tests and at that time my sed-rate was high and VitD was low. Not sure what else he tested at that time since I don't have those labs. He did try a few medications which didn't help. He then sent me to the Rheumy. who then did more blood work for RA, Lupus, Hep., Lyme etc. ect. and all came back neg. In about 8 months time the only thing they did try that did help and made me feel lots better was prednisone. But, he would only keep me on it for a week and back to feeling icky I'd go. Then I guess he just was at a loss of what to do (not sure but that's how it seemed) since my next few appointments were me going in and him asking how I was and being sent home. I decided it was time to find a new PCP. This one has ran more tests/blood work, MRI etc. but still nothing really is showing other then the elevated wbc and mcv. Last blood work showed lower wbc (now right on the boarder) and still higher mcv.

Sometime this coming week I'll get the Sjogren's and Sed done again. And see what my PCP says when I go back about it all.

I do feel the swollon glands/nodes does have something to do with whatever is going on. She just needs to figure out what "it" is.

It sure does amaze me how complicated the human body can be when it comes to figuring out what is wrong with it :)

[Ken_PA]

It's a good idea to take a small notepad that have your questions already on it.  Nobody can be expected to remember everything, especially at a stressful time. You can also write down key terms and look them up (or ask here) afterward. Good luck on your next visit.

On a side note, I find it odd that doctors claim that an infection can't last two years. In this thread alone were mentioned HIV and hepatitis (viruses) and Lyme (bacteria/spirochete)  that are well known to last years and years. There are also Epstein Barr, various herpes including colds sores and shingles, etc. Also probably chronic fatigue syndrome, where people have swollen nodes for years.

So when a person has a persistent virus and a very reactive immune system, they trend to have a rough time in the medical system that still believes an infection can't last for years. That's particularly true when an infection 'hides out' in a node.

[tripnstumble]

I assume they were talking about the left salivary gland not producing saliva. I couldn't ask much since his hands were in my mouth :) He said a whole bunch of stuff. Half of which I have no idea what he was talking about and the other half I tried to remember the best I could. I go back to my PCP on the 23rd. I'm sure she'll tell me what his report said and if I don't forget I'll ask for a copy of it.

[Mochadelicious]

I too was a little confused with your comment about the node not producing saliva.  So, do you have enlarged lymph nodes or salavary glands?    

[Ken_PA]

quoting: "One doesn't produce saliva like it should..."

keep in mind there's a difference between lymph nodes and salivary glands, though they are located right next to each other under the jaw

[tripnstumble]

Well, I did go to the ENT Dr. today. I had the PA who was very nice. She checked and talked etc. She did then say however that she did want the Dr. to take a look. Ughhh got a bit scared there for a sec. lol So he came and checked them out. Of course said things that I have no idea what he was talking about :( He said they are very enlarged but because it is both of them and they have pretty much just been like this we're just going to watch them. He doesn't think it's from any infections because it's been 2yrs and they are both large. No stones or anything like that. One doesn't produce saliva like it should and they asked me about my nose and my throat and I told them I'm a "dry" person. They mentioned sjogrens since that can cause enlarged nodes and I told them I am neg. was already tested. So, running that again. And just wait... But, he did say that if they do happen to change in any way shape or form they will call in for a ct scan right away.

So, I'm sure all is fine.

[Mochadelicious]

That's great news!  Yes, it's probably good to follow up with your doctor but it sounds like you have nothing to worry about.

[tripnstumble]

I picked up my results to take with me on Mon. and all looks fine to me. So, I'm not worried about. I'll go since my Dr. wants me to go but at least the x-ray looks good and my wbc count went down some so all sounds good :)

[tripnstumble]

I'm not to concerned with cancer of any type, or more like I wasn't at all until my Dr. mentioned it... I just thought this is how my lymph nodes were...

I'm sure it will be nothing and one more thing we can rule out :) I do pick up my blood work results from today on Friday so I'll have those. Hopefully the white blood cell count went down. At least if anything that will definitely make me feel better.

Will let you all know how it goes :) ty

[Ken_PA]

Hi, if you're concerned about cancer I'd ask for a sonogram of the node. That can tell a lot - especially if a "fatty hilum" is present which just about always means that it is not cancer.

My guess is you had an infection right in that node, and the result is scarring aka fibrosis which makes it not go down and also makes it somewhat hard.

Viruses are particularly mysterious and not always understood. Also, petechia have other causes besides cancer.


Normally a node swells up because it is generating the immune cells used to fight an infection in another area. Imagine how an army base might be empty in peacetime but gets filled with soldiers in wartime who eventually get shipped out to someplace else where the war is occurring. After the war, the base gets mostly empty again.

Now imagine a different case where the base itself gets invaded. There could be damage all around, with rubble lying everywhere. So that's somewhat like what happens when a node gets infected.

[tripnstumble]

Thanks for the reply.

I did get my x-rays and more blood work done today. I see the ENT on Mon. the 5th of Dec. so maybe know a bit more then.

One thing I have noticed is my glands don't go down I guess I just ignore them is all. They don't hurt or bother me so I don't think about them pretty much. All my Dr's pushing around and poking sure made me feel them though :)

One other question if anyone knows. From an x-ray they can see the "lump". But, can they tell at all if it's anything to worry about or if it's nothing to worry about? All my dx slip says is hard/enlarged cervical left side lymph node.

[Mochadelicious]

Welcome to the forum.  I can only comment based on my experience as a patient with lymphoma, but I will do my best to help.

There are many kinds of lymphoma, some slow growing and some aggresive.  Someone with a slow growing lymphoma (aka: indolent lymphoma), can have it for many years without any symptoms, including skewed blood work.  Even after being diagnosed with indolent lymphoma myself, my blood work was always within normal range.  So, someone who has abnormal blood work can raise concern for lymphoma, someone who doesn't have abnormal blood work can still have lymphoma.  

The only definative way to diagnose lymphoma is with a biopsy (and I believe that's also true of leukemia).  When you see the doctor, it wouldn't hurt to discuss the possibility of lymphoma or leukemia, just to plant a bug in her mind.  Your doctor may agree that some of your symptoms (night sweats, weight loss and lumps) may point to a possible cancer diagnosis and a biopsy may be warranted.  However, the lumps on your neck that fluctuate in size throws me off since I believe lymph nodes don't typically shrink with cancer.  I could be wrong about that.  

The petichiae also throws me off.  I haven't heard of that as being a common symptom with lymphoma/leukemia.  So, that alone could be something unrelated.  I wish you well and I hope you are able to get some answers soon.