Nodes on scalp only symptom

[meggylng]

Hi I have CLL/SLL my blood work is good all within range, the few that are out of range are only minimal out of range, nothing the Dr. is concerned about. My only problem is the nodes on my scalp, i have lots of them, some of them are pea size, some feel like a kidney bean. Some of them hurt and some of them itch. Other than that i would never think about having CLL. Looking for someone who can tell me their experience with nodes on scalp.

[AussieNeil Partner Administrator]

Rarely, CLL can cause skin problems, so I'm not sure if this is what you are experiencing. lankisterguy , do you have any ideas?

[meggylng in reply to AussieNeil]

I have had a CLL specialist, my primary oncologist and a dermatolgist all look at these bumps and they all say they are lymph nodes, I also had a biopsy of one on the upperside and lower side of my scalp done. The diagnosis is CLL??

[LovecuresCLL]

Those are most likely not lymph “nodes” if they are on the top of your scalp. It is a skin rash of some sort. Nodes are right below the ears in the neck but not on the crown or top of the head.

It could be dermatitis secondary to CLL or rash due to treatment or another medicine you are on. Bug bites are less likely.

You could go see a dermatologist to get a topical medicine for it. I use Sarna cream cause it is an over the counter cream that stops itchy until I can see a derm. But it’s on the scalp and hair is there so cream doesn’t get to the skin very well .

Check with a dermatologist or if you see your doctor in the next day or two ....show them these bumps. But they are probably not “nodes”

[meggylng in reply to LovecuresCLL]

That is why i am so confused, i didn't think lymph nodes are in that area, but had a CLL specialist look at them and they took biopsies that came out as CLL. I have never had the specialist or my primary oncologist call them anything else, i have like 20 on my scalp, some are pea sized some shaped like kidney bean, My pcp did not know what it was so sent me to the dermatoligist he is the one that said it was lymphoma. I have had biopsies of one on my ocipital area and one on the top of my head done. Came out as CLL.

[81ue in reply to meggylng]

clfoundation.org/primary-cu...

cutaneous b-cell lymphoma?

[AussieNeil Partner Administrator in reply to meggylng]

This is the point I was trying to make. Sometimes CLL cells can infiltrate unusual places or it might be one of these, other than the fact that CLL cells were found.

lymphoma-action.org.uk/type...

What you have is rare, so an accurate diagnosis would be best achieved by someone who specialises in skin lymphomas.

Neil

[very in reply to AussieNeil]

CLL infiltrated my husband's ear lobes and skin on his penis.

Jenny uk

[81ue]

Here's a lymph node location diagram

byebyedoctor.com/lymph-node...

I found a back of head lymph node location map (3D model takes a while to load)

healthline.com/human-body-m...

[LovecuresCLL]

They may be follicles too. Pustules (zits) basically. Eosinophilic folliculitis occurs with CLL commonly . Eos cause the itchy.

The steroid cream ....you can get over the counter “cortisone”. But it’s not strong. The derms can prescribe a stronger steroid cream. If the little nodules (not to be confused with lymph nodes) persist they can biopsy them.

I have over 500 lesions on my skin so I know how painful itchy these lesions are.

Dealing with stuff like this popping up constantly cause of CLL

I am a dermatologist’s nightmare .

[MsLockYourPosts Passed Volunteer]

As you’ve already had a biopsy that has confirmed the presence of CLL, I agree with Neil. Time to take those reports to a doctor who specializes in skin lymphomas. If you give your general location someone may know of a good, medically oriented dermatologist. I went through 5 before finding one who understands a headache (head - love spell check) to toe skin check, and will refer patients who are looking for Botox, etc. but won’t discuss it. Totally a keeper!

[meggylng in reply to MsLockYourPosts]

I am in Northern Calif , Bay area