fairly normal blood work but doctor still concerned about possible lymphoma

[knvv]

Hi there. For a long time (almost 2 years now) I haven't been feeling well at all. Finally starting to figure out part of what's going on with me so I consider myself 1/2 there :)  I have a lot of crap going on including possible lymphoma or Sarcoidosis or another autoimmune disease. Even though my blood work seems fairly normal, is it possible to still have lymphoma?

I have swollen lymph nodes in my neck which has enlarged some and became tender within the last couple weeks (not a lot but enough to notice)
lymph nodes in my neck, also my chest traveling all the way down my stomach into my abdomen
persistent fatigue
unexplained weight loss  
trouble breathing
chills
weak
achy muscles
a little joint pain
headaches
and sometimes just feel sick ...

I've had a CT scan which found all those lymph nodes, biopsy turned out negative (yay) though my oncologist still wants to do a PET Scan esp. with the symptoms I told him about (He seemed pretty concerned with the weight loss and the chills I've been getting) so Thursday I should be getting that unless my insurance denies it which they better not .. So gunna check for lymphoma and Sarcoidosis and who knows if anything else and compare with the CT scan I got last month.

I guess I'm wondering if any one has had a fairly normal CBC and still has been diagnosed with lymphoma?  normally my WBC is a little elevated it's usually between 12 - 19 .. but once in a while like today it'll be normal.

[Pinzey22]

hi everyones body reaction is different. found mine by accident no side effects bloods were all normal everything was normal. until I persisted to ask is there  any other test before I go. had a chest x-ray and was diagnosed with non hodgkins lymphoma. if u are still persistent even if it's to ease your mind don't let any doctor fob you off. it is your right as a patient to request more tests. You don't have to have symptoms or abnormal blood tests for there to be health issues. I hope you get everything sorted

[Shellyojed]

Awesome analogy!

[LynneMargot]

I recommend that you continue to try to get answers.  I had swollen lymph nodes in several areas, low wbc, but few other lab abnormalities.  In fact, from week to week, my labs changed to normal and then to abnormal... I had fatigue and frequent infections. I was convinced that I had sarcoidosis, had lots of symptoms. My lymph nodes were very painful, and I was starting to be in pain all the time. I had two really awful doctors, and finally got a referral to a local doctor from someone on the Sarcoidosis support group Inspire. He did a biopsy and I had a diagnosis finally:  Large diffuse B-cell lymphoma. I'm in chemo now, just completed my fourth treatment and will have evaluations next week to see how the treatment is working.  My advice is to keep trying to get answers.  Good luck!  

[susan047]

You have a lot of things going on.  You said you had a biopsy.  A Biopsy of What?  Was it a bone marrow biopsy.  You have something going on, and it does not have to be cancer, but I am a firm believer in second opinions.  I would pay for a office visit to see another Oncologist to see if they agree on all your testing.
I went for a routine blood test, and felt fine.  My only thing was fatigue which I attributed to my job.  My White Count was up with a reading of 18.  The doctor did a bone marrow biopsy on me right away to see what was going on.  It turned out I had Leukemia, and I was very shocked because like I said I basically felt good.  I am doing fine.  This diagnosis goes all the way back to 1998, and I have been and still am on treatment all these years.  Long Story, but I would want someone to get to the bottom of why you are feeling like this with numbers jumping around in your blood testing.  You should not be feeling like this for 2 years already.

[Ken_PA]

As you say, the PET is some indication that you don't have lymphoma in your affected nodes. So that should be a relief.

Cancer cells divide frequently, so they use more glucose (blood sugar) for fuel than ordinary cells do. A PET uses a radioactive sugar, that you got before the scan. So if any spot takes in a lot of the radioactive sugar, they can see that spot "light up" on the image.

Have you ever seen a science fiction show where something made of **antimatter** collides with ordinary matter, and there is a big explosion? That is what happens in a PET scan. The radioactive sugar decays and actually emits particles of antimatter. Each of those particles collides with a particle of ordinary matter, and they more-or-less explode. Your body doesn't explode, because what's happening is on such a tiny scale. But there is enough energy emitted in rays to create the image.

Good luck with the disability claim.

[knvv]

Hey. Well, got results from the pet scan back today and so far it looks good for not being lymphoma. He's not totally ruling it out, but he said at the moment he's not worried at all. There's a chance where it could be lymphoma but if it is, it's very early stages. Lymph nodes didn't show up "hot" as he said and if there was something going on there, they would be.But he's still keeping an eye on me since I have so much going on and no one can seem to figure it out. :(  He's running a lot of tests though. ANA, HIV, some endocrine test and probably others. But those are the ones that I know of. At least I know some things are ruled out like Sarcoidosis, TB .. But I just wanna know what's wrong with me. I told him at the moment I don' t care. I wanna know so we can fix what's wrong. I have my endocrinologist appt. on Wed unless I can move it up to Friday. Hope so. And the only other thing I have to deal with now is figuring out the best way to appeal for my short term disability. Heck, I think I deserve it if two of my docs say I can't work or even drive.

Blah.

[knvv]

Hey again. :) Well, just want general knowledge of blood work is all. The way you were describing does kind of help but I wanna know a lot more LOL. I still have to look at youtube for the khanns academy thingy and all. I don't want you to have to worry about explaining every little thing though to me :D Like you have been doing LOL Even if it is helping a bit. I think I'm going to try and look up for some hopefully helpful websites.

[Ken_PA]

hi again, do you have a particular part of the bloodwork that you're focusing on?

[knvv]

Nope. I'm not scaring myself at all. It is what it is, that's how I look at it. Either way,  I know it could be other things and not just cancer. Endomitriosis, Auto immune or Sarcoidosis or whatever .... 'sides I never did say anything in my last few posts or two about cancer and just cuz I'm trying to figure out what things mean in blood tests? Doesn't mean I'm scaring myself either. I'm just curious, I wanna know more about the meaning behind the abbreviations really. That's all there is too it.

[Totie]

Sounds like you might be scaring yourself into cancer. Just wait to worry about things until all your test are in.

[knvv]

Nope. definitely not pink eye. This is different. It's not crusty or anything similar to it. It's red,  extremely irrittated .. as far as I know I didn't get anything in my eye. Well.. I'm heading off to my ENT to see what the dizziness is about and I'll see what he thinks. I sent him a copy of my pet scan too since they scanned my head also. Maybe it could bring up some clues or something.

[Ken_PA]

Well, there's a co-incidence. There was just another post today mentioning pink eye.

If antibiotics are helping you, then maybe you have bacterial conjunctivitis?

[knvv]

Yeah it is confusing.. still confusing but I *Think* a little less :D

Thanks. not that really makes sense :D :D

hmm... now I'm wondering if I'm getting an infection in my eyes .. I got a rash on my face back and my eyes were red but now after taking antibiotics they are a lot better.. not 100% but a lot better already after first dose.. to me THAT'S scary ... anything to do with the eyes is terrifying.

[Ken_PA]

Hi, Im glad I was able to be of some help. It is confusing for anybody at first :)

Here's another little thing: GR stands for granulocytes, which means cells that have granules. The granules hold chemicals inside.

A neutrophil is one type of granulocyte. It can engulf an invading bacteria, like Pac-Man. But then what does it do with the bacteria? It blasts the bacteria with the chemicals in its granules. Those chemicals are similar to bleach... just as we might use bleach to disinfect something.

[knvv]

I'll be honest with you ... that has helped some, but at the same time still a little confusing :) But I get it more now than I did before. Thanks a lot for that :) And I will definitely check out the youtube thing with khan academy. Also thanks for putting up with me :D :D :D

[Ken_PA]

Hi, then you'd have to begin at the beginning: by knowing what each of the main blood cells usually is responsible for. I'd look for animations rather than articles at first. Try khan academy on youtube.

Here's a very basic primer: imagine that you know how to spot poison ivy, but I don't. However, I know how to work the sprayer with the weed killer, but you don't. So you go out in the back yard, marking each enemy plant with a red flag. I come along later and kill each marked plant.

The flags are antibodies. You are equivalent to B-cells (that make the flags). I am equivalent to T-cells, that do the cell killing. (B-cells and T-cells together are called lymphocytes.)

But sometimes, the B-cells go awry and they end up marking good and necessary plants. The plants (equivalent to your bodies normal cells) then get killed. That'd be similar to autoimmunity.

But the immune system is so complicated that all of that is only a fraction of the whole. The other big part occurs when T-cells and macrophages go after enemy cells directly - without involvement of B-cells.

I hope that helped a little, rather than causing more confusion :)

[knvv]

First lemme answer the questions in your first post, k? :)Well, for about 2 weeks about a month ago maybe? I kept having a dry cough that just wouldn't go way no matter what I did. Periodic fevers? Like I told my oncologist when I told him, I don't know if they'd be considered fevers or not but I'd get periods where I'm really warm, it feels like I have a fever but when I take my temp, it's only 99 - 100. But then again for me that is kinda high cuz usually when I get a fever, I tend to run cooler .. could be cuz of  the thyroid which will do that to you. Nope, not a special low carb diet. I doubt a parasite, I hardly ever go outside or anything and my dog has been clean of anything no ticks, etc ...Unfortunately no exotic places I've been to :( Though my parents go on carribean cruises all the time. Does that count? LOL As far as tiredness? All the time. I'll get a great good nights sleep and still wake up exhausted ... have to force myself out of bed most mornings. (Glad Ive been taken off work or I might have to worry about falling asleep there LOL) I almost always take a 2 - 3 hour nap daily :( And it's funny that you mention I have a mystery condition :D My PCP keeps saying that I'm really hard to diagnose me cuz of my blood work (I'm glad he's honest with me :)  and that I'm quite rare (Well.. we already new that :D) Also that one thing could be covering something else the way I am LOL  And I hope that I'll be an expert soon enough :) I'd like to know a little about what I'm going through ya know? LOL But it all is a little confusing to understand even if you find pretty good pages that explains what the blood work means etc ...  I guess I wanna see if I can bring some ideas to the docs and all.  We'll figure this out really soon I hope, even if it is "just" another autoimmune or whatever ... blah ...

[Ken_PA]

hi again, I just saw your journal. Seeing that, I'd guess all your problems originate with autoimmunity - not cancer.

The only cancer connection to consider is that autoimmunity can be secondary to B-cell lymphoma. IOW, the B-cells are deranged and so they make antibodies that attack your normal body cells. That's not likely but I'd assume your onco is considering that possibility.

[Ken_PA]

Hi, your granulocytes seem to be mainly accounting for the elevated WBC. So that likely means neutrophils, which are the most numerous of the granulocytes and which are what generally fight bacteria or fungi.

But the immune system is very complicated and all is not known about it anyway.

Do you get periodic fevers? Coughing up any green stuff? I'd also try just pressing all over looking for pain from a hidden infection, it's worth a try (a PET would do the same).

Your SOB could be from mucous in the lungs. The joint pain from inflammatory messenger molecules, and so on. An infection in the throat could end up in the stomach just by swallowing microbes, likewise they can get into the lungs.

The weight loss is a mystery, since they'd have checked your thyroid.

Are you on any special diet, like lo-carb?

Could you have gotten a parasite anywhere? Any exotic vacations?

Well, if there was an obvious answer, your docs would have found it. So you have a mystery condition. Is your tiredness generally all the time, or just on exertion?

>> they both said it was possible that one lymph node may not have cancer cells when another one could.

But then you'd have to explain why you'd have cancer plus some reactive nodes. It is possible that cancer gets into the marrow which suppresses production of immune cells and therefore increases infections, but your CBC doesn't show that.

Painful nodes are *usually* not cancerous. (Everything is about usually and maybe and perhaps.) But nodes swell because they are getting stretched form inside by all  the extra cells being produced to fight some invader - like an army base during wartime. (Plus a chemical called bradykinin gets released and causes pain.)

Well, learning and researching is better than watching tv, so maybe you'll be an expert before long :)

[knvv]

that's GR# 8.0 sorry LOL

[knvv]

Hi, there. Thanks for responding. I do appreciate it. :)

Good to know that you can have fairly normal cbc with lymphoma. As far as my weight loss goes, I haven't really changed my eating habits, I have been hungry, my appetite has not been killed and in fact have been keeping track of my diet. I have been eating around a 2000 calorie diet (appropriate for my weight) and not change too much of my eating habit. I haven't been excersizing a lot either mostly cuz I just get out of breath so easily and so exhausted so quickly. Soo .... anyways   I have a copy of my most recent blood work from my oncologist so I'll put that down and what it was on March 27th, also ..


WBC: 10.1 (that's usually elevated to 12-19)
LY: 17.2 (that's low) should be 20.5 - 51.1
MO 7.9      3%??  should be 1.7 - 9.3 .. I don't know what the 3 means where it normally says if it's Low or High ...??
GR: 74.9    3%    should be 42.2 - 75.2
LY# 1.7   ... should be 1.2 - 3.4
MO# 0.8    3H???  should be 0.1 -0.6
GR# 7.6  3H?? should be: 1.4 - 6.5


on the 27th of march it was:

WBC 12.0
GR: 8.0
HGB: 10.8
HCT 33.5

Oh yeah, I know it may not be cancer and I'm hoping it's not. I really am but at the same time I Just wanna find out what's going on :( I don't care at the moment what it is ya know? I know it may be lupus or Sarcoidosis or another auto immune disease as well .. but I am really really glad he's double checking everything :) Makes me feel a lot better. But when I did ask the surgeon and my oncologist . they both said it was possible that one lymph node may not have cancer cells when another one could. One thing I really wanna learn is how to read blood work :D :D :D I just know if it says if it's high or low LOL

[Ken_PA]

Hi. Yes, it is possible to have a normal CBC with lymphoma, in fact I'd expect it initially.

As to weight loss: have you tracked your calorie consumption? IOW, something like a stomach infection might have killed your appetite, which is very different from having cachexia due to cancer.

But my *guess* would be a virus infection, rather than cancer. A lot of your symptoms can be accounted for by various immune reactions to the infection.

Think of this precept: "what possible cause is there, which though unlikely, would be catastrophic if missed?"  I'd guess that's why your doc continues to investigate for malignancy, even though it seems unlikely in your case - especially with a negative biopsy.

Which part of your WBC is elevated? The lymphocytes?

[knvv]

just reread this and made a little mistake oopsie :D It's not cuz of the chills but because of the swollen lymph nodes as well1as extreme weight loss.. LOL My bad