Pain in lymph nodes..normal?

[Nettiehudson]

just wondering~has anyone experienced pain in the lymph nodes in groin area?? They are not very swollen, sometimes both sides will have intense pain. The ones in my neck will also have tingleing and itch at times. Is this just me??!' I'm on the W/W but my neck is starting to look like a body builder. Thank in advance

[Cmac70]

Hi there, I get pain in my groin and neck, i can feel the lymph nodes in my groin they are not overly large and its more of a discomfort than pain a dull ache. Sometime when it is really noticeable my legs will feel tired and a bit sore. I also have a fullness and dull ache i my neck right side. My hematologist says its enlarged but not overly and shouldnt be bothering me. I too am on w&w.

Chris

[starsafta]

Enlarged nodes in tight areas, like armpits and groins, where there isn't a lot of room for them to sit, tend to be more painful than nodes where there is more wiggle room. I think of them like icebergs. There is just as much rounding below the surface as there is just below the skin. Sad reality.

[trswarranty]

Yes my husband is suffering slightly with en large nodes that’s how they found out he had CLL because his bloods were and are very normal

His groin is very uncomfortable in his one side and the ones in his neck make him gag sometimes

He also has them raised at the back of his knees and under his arm pits

But no one in his medical team seem to be worried by them

He is on W and W

[Bethan49]

Understand totally.. If I moved my legs in a scissor action, such as getting out of the car, I would have a wave of pain. It made me yelp and I felt horrible. Towards the beginning of treatment it hot worse and yes my neck merged into my face. I struggled to drive as the lymph nodes hampered the movement.

After Fcr I now have a jawline again..

Tell your doctor...make sure you are monitored.. Tell them of any changes x

[Hoffy]

It is normal with cll. I found they would hurt as they grow for a week or so then they would not hurt once the stabilize. I had a lot of itching in my groin too.

I am on a clinical trial or I plus v.

They went town in 3 days on Imbruvica.

Make sure to find a cll specialist before treatment.

Look at all trade offs

Be well,

Hoffy

[Nettiehudson in reply to Hoffy]

Are you in a trial in US?? And can I ask how/when dr decided to treat?? Thanks so much !!

[Hoffy]

Yes, San Diego but there are many other sites. It is through Pharmacyclics. Sites were closed but now they are reopening. My nodes got very big and I was losing some weight so I had to start. Unless you have serious B systems you can usually wait. See a CLL specialist. Look at the long term trade offs of some older treatments. I almost did a different trial with Imbruvica and Gazyva but waited after I found out I was 17P deleted. I wanted Venetoclax in my treatment.

The CLL society web site can be very helpful.

Be well,

Hoffy