Lymph nodes and rash

[Proudmom1983]

Hello everyone! Can anyone please explain to me how big your lymph nodes are? Do they wax and wane? To what sizes? Do you have skin rashes or itch? If so please describe your rash.

[AussieNeil Partner Administrator]

We have about 500 lymph nodes and they are typically under 1cm in the longest dimension. In healthy people they wax and wane as lymphocytes grow and die as infections are fought and banished. That happens with us too, but CLL cells live longer before dying, so our nodes can continue to grow.

One trigger for starting treatment is nodes growing larger than 10 cm or 4 inches in the longest dimension. Don't forget that when you estimate the size of a node, you are including the thicknesses of two folds of overlying skin and tissue.

Neil

[Proudmom1983 in reply to AussieNeil]

Thanks! I don’t think mine are very swollen then. They just feel like a rubbery/fixed smashed skittle node that wax and wane daily for a year and a half now. Dermatologist finally gave me an antibiotic.

[Hidden]

I can’t add anymore than what Neil’s already explained about the nodes but your immunity is low with Cll and we are prone to develop skin conditions like eczema and others...

It’s also a common theme to suffer with things such as dry skin in certain areas...

Stuart

[Proudmom1983 in reply to Hidden]

Thank you! I have a terrible rash on my palms. Itching keeps me up at night. I became allergic to all chemicals! I use plant base everything. Doesn’t respond to steroids. Itching on my chest, lower legs, and the back of my head without a rash. But my hands are terrible looking 😐

[halldp in reply to Proudmom1983]

Rash and itching in various places. Drives me nuts! I use steroid salve lowest dosage applying sparingly in the itching area. Helps!

[goldstream]

I have had swollen lymph nodes for about 5 years and yes they wax and wane. While each of us is different what I continue to under-estimate is the ease with which we can get infections (e.g. skin infections)

[Name-1]

I had macull-papulosis rash (generalisat) before therapy and after in relapse.I did not work with antihistaminics,antibiotics and local therapy.Spontaneus go aut after more on one month.

[Upthenorth]

I had lymph nodes popping up everywhere—in front of my ears, down my side, up the back of my neck. The one on my side was close enough to my breast that I was concerned—both placement and size (about golf ball). A couple of days on ibrutinib and most had decreased substantially if not altogether disappeared. I felt like a lumpy mattress.

[Newdawn Administrator in reply to Upthenorth]

Just how I feel at the moment Upthenorth.

I ran my hands through my hair to dry it this morning and it felt like I was rummaging in a bag of marbles!

Not nice 🙁

Glad to hear yours have deflated nicely.

Newdawn

[Lola69 in reply to Newdawn]

How many nodes do you have on your scalp Dawn?

I had 2 in the back of lower skull.

FCR removed them very fast.

I really hope u start therapy soon.

[Hoffy]

High IGE can sometimes cause itching. I use strong steroid creams like Flucinonide and oral antihistamines.

Imbruvica bring down IgE and the itching issues we treatment.

There are other drugs to bring down iGE but if you're going to do them you might as well just treat your Cll. When you do bloodwork they can test for IGE.

See my past post for more information on my treatment history.

Be well,

Hoffy

[Lola69 in reply to Hoffy]

Hello Hoffy!

I read your profile.

Funny as I was originally diagnosed with CLL but am stil SLL after 5 years of therapy ..

[Hoffy in reply to Lola69]

Sounds good. I hope you are doing well. Everyone is different.

Be well,

Hoffy

[Lola69 in reply to Hoffy]

Thriving thx Hoffy!

Be well too