Question about lymph nodes

[Proudmom1983]

Hi all! I have these lymph nodes on each side of my neck that wax and wane daily. They don’t ever hurt but they do ache. About the size of a skittle. I’ve had about 40+ lb weight loss, night sweats, rash, my bones ache, and my face and hands swell. ENT said he doesn’t feel anything ( because they were not inflamed at the time) I know deep down something is not right. Test come back negative. Does anyone have similar symptoms? Or should I let this go and stop worrying?

[Flabal]

Hi Proudmom1983,

I hope you are welll tonight. We’re are you in the UK, USA, Canada?

The symptoms you describe sound to me like CLL. have you done any blood tests yet? If you are not yet diagnosed it may be an idea to go to your doctor. Tell them all the the symptoms you have been experiencing and make sure you do not go home without an answer.

[Proudmom1983 in reply to Flabal]

Hi Flabal! I’m in the USA. Yes I’ve had blood test done. Everything keeps coming back negative. I get these Petechiae rashes on my chest and my body has become allergic to all chemicals. Even being chemical free the rash still presist. I’ve had these symptoms for over a year now. I’m starting to think I’m losing my mind. Everything keeps coming back negative and I’m the type of girl to go to work hoping on one leg if I have to. I’ve ask the doctor to do a biopsy but he says there is nothing to biopsy because he couldn’t feel anything. I told him they weren’t inflamed. My nodes are like a rubber feeling that wax and wane but they haven’t really grew much in size. They seem to presist more as time goes on. I always know when they pop up because they start aching almost like a contraction. They feel like they ball up and ache. Maybe I should just leave the issue alone till something else happens?

[Proudmom1983 in reply to Flabal]

Also I want to add, my bone pain is in my lower back and my hips. Sometimes pain last 3 weeks with me crying in pain But then the pain will stop for a couple weeks. I’m so confused. I know this probably isn’t the right place to ask for opinions but I really don’t know where to go. I live in a small country town so I’m not the most confident in the doctors around here but then again blood test and scans don’t lie!

[Cllcanada Top Poster CURE Hero in reply to Proudmom1983]

I really suggest you work on seeing a CLL doctor in a large research hospital, in the closest city..

If you give your general location then we might be able to recommend a few hemetologists with current CLL knowledge.

I lived in a remote rural area for 20 years, so I know what you might get in regards to medical care... ☹️

Please seek a second opinion.. you should not be in pain for 3 weeks... you need to find out what is going on...

~chris

[Flabal in reply to Cllcanada]

I agree with Chris on that Proudmom1983. You need to look for specialist help.

[Proudmom1983 in reply to Cllcanada]

Thank you for the replies! I really have nobody to talk to as I don’t want to come off as a hypochondriac. I live in southern Illinois. I take tons of supplements everyday! I drink high quality green drinks from organifi, Tumeric pills, juice plus, probiotics, omega xL pills ect. All that and I still feel like I worked out in a sauna all night! I do appreciate the feedback!

[Cllcanada Top Poster CURE Hero in reply to Proudmom1983]

Perhaps your self treatment diet is causing you problems? Try backing off on all the supplements and see if things get better...

Would be my first thought...

~chris

[Proudmom1983 in reply to Cllcanada]

Yes I’m currently doing that! I haven’t taken anything in a week. I also quit taking my supplements at the start of my symptoms thinks maybe I was allergic to something in my supplements

[Proudmom1983 in reply to Cllcanada]

I’ve also taken all chemicals out of my life. Even plant based toothpaste... lol

[Cllcanada Top Poster CURE Hero in reply to Proudmom1983]

You can check out this list.. likely Nashville, St. Louis

cllsociety.org/toolbox/cll-...

Plastics?

[Billhere in reply to Proudmom1983]

Please see a hematologist and beware supplement may cause problems in some people.

[Lo16 in reply to Proudmom1983]

This is the best list to search for a cll specialist.

cllsociety.org

...... then put in the search, cll drs. I notice there is some in St Louis, Indianapolis and Chicago. Whichever way is closer for you.

Dont give up, keep searching amd dont let anyone make you second guess yourself. Listen to your body, you know it best.

Prayers.....

[Boston1985 in reply to Lo16]

I don’t know whether this will be of any help, but as a fellow patient with cell/sll since 2007, I have had many times when my lymph nodes waxed and waned, in terms of swelling, and at those times, the nodes didn’t necessarily hurt.

I strongly agree with the other replies, urging you to see a CLL specialist. I know it’s difficult when you live in a rural area, but you and your health are worth it! There are many treatment modalities available now which weren’t available to CLL/SLL patients as little as two years ago. The chemo medicine I’m on at the moment is now approved by the FDA, whereas two years ago, I couldn’t get it because I didn’t fall into one of a couple of specific treatment groups. I still received chemotherapy, but with two different agents by IV into my port, both of which had multiple side effects, as opposed to the once a day pill I take now. Good luck to you!

Debra

[Proudmom1983 in reply to Boston1985]

Thank you! My blood work came back normal so I don’t think it’s CLL

[larrymarion in reply to Proudmom1983]

Make sure the blood work includes FISH and flow cytometry. Best given and analyzed by a cll specialist. Don't just rely on a CBC. Insufficient to determine cll.

I've been dealing with cll since 2005. As o tut hers have noted,the quality of diagnosis and treatment now is stunning vs. Just a few years ago. Don't rely on local docs to determine if you have cll.

[Proudmom1983 in reply to Boston1985]

Thanks for your feedback! My lymph nodes don’t hurt but ache a lot. They are Relatively small nodes about the size of skittles. From what I been reading, CLL/SLL nodes tend to be a bit larger?

[Lola69 in reply to Proudmom1983]

A normal node is the size of a jelly bean.

lymphoma nodes come in a sizes ranging from 2cm to 10cm and more

My doctor told me to never touch my neck area especially as for now the nodes are sleeping. DND

[Billhere in reply to Flabal]

Yes, definitely get your blood work done by a GP and she/he can direct you to a proper hematologist.

[Hidden]

Yes I am the same. No weight loss tho or swelling. My neck gets very stiff some days too. I think it's all part of the process tbh

Take care

[Suduart]

Do not let this go. My husband has the same symptoms but it took 9 months and a bone marrow test to diagnose Waldenstrom lymphoma. The rash is a key indicator. He is finally in his first chemo treatment today.

[Proudmom1983 in reply to Suduart]

Can I ask what type of rash he has?

[Suduart in reply to Proudmom1983]

Hard to describe, he has white blotches all over as if the blood came to the surface and wants out. He is so itchy that he uses a hairbrush for relief but that makes red spots some of which bleed easily. He is miserable. His first two chemo treatments and the relentless itching continues.

[Lola69 in reply to Suduart]

A brush is full of microbes. Brushing the affected region is just as worse as scratching and spreads infection .

Why not use a cold compress that u can keep in fridge.

Never apply ice as ice burns the skin.

[Proudmom1983 in reply to Lola69]

I have a specific brush I bought only for scratching. It’s hard not to scratch with something in the moment. I rotate ice packs daily. Thanks forbthe info.

[Suduart in reply to Proudmom1983]

The only test that can give you accurate diagnosis is a bone scan or a scan of the spleen if enlarged. Demand a bone scan.

[Proudmom1983 in reply to Suduart]

I can relate using a hair brush. The itching wakes me up. I can scratch for hours. However my rash is different. Mine resembles eczema a lot. Red, itchy, little fluid filled blisters under the skin. That rash is on my hands. Then my lower legs, chest, arms, and the back of my head all itch without an obvious rash. My thoughts and prayers are with you and your husband!

[Mldeterm]

We live in IL and my husband sees Dr Brad Kahl at Wash U. If you have SLL (the lymphoma version of CLL) your blood would show as normal. We had to have a lymph node removed for diagnosis.

[Proudmom1983]

Is there a specific type of blood test I should ask to be done? Doctors won’t do a biopsy

[Zappymom12 in reply to Proudmom1983]

Blood work can show your lymphocyte levels. I’d have a comprehensive blood work that would show vitamin D, magnesium, ferritin+iron+TIBC, a comprehensive metabolic panel, a CBC. It has to show if there is any evidence of blood cancers.

[Lola69 in reply to Zappymom12]

The LDH May be raised in SLL.

Mine was 280 at diagnosis

[Lola69]

Took them 6 years to diagnose my SLL as all my bloods were normal.

my little chick size node on jaw was misdiagnosed as a salivary gland infection.

[Proudmom1983 in reply to Lola69]

How were you diagnosed?

[Lola69 in reply to Proudmom1983]

I had a big massive toothache and they said was an abscess.

Took antibiotics for one month then I saw an ENT where he decided to do an upper thorax MRI ..

image came back full of nodes then they did a lymph node biopsy under general anesthesia.

Took 6 weeks to figure out which subtype of lymphoma I had.

At first they thought a HL

[Alpha66]

Full blood test results? Lymphocytosis level? If CLL is suspect due to high lymphocytosis lasting a few months then Flow Cytometry will answer the question.