Hyper metabolic lymph nodes

[wiggles123]

I could really use some advice on how to deal with enlarging lymph nodes. I had a pet scan and hyper metabolic lodes was noted. Also had a biopsy and confirmed cll and sll. My underarms and sides are swollen and getting painful. Any ideas for reducing this? What is the treatment for this? Thanks for any help.

[Cllcanada Top Poster CURE Hero]

Here is a previous thread, with a recipe for castor oil packs... they can give temporary relief.

healthunlocked.com/cllsuppo...

However, long term relief only comes with treatment for the CLL. On occasion nodes or clusters can be remove by surgery, if the hyper metabolic activity is limited.

Do you know the SUV for area?

~chris

[Jm954 Administrator in reply to Cllcanada]

Lymphodema is often a consequence of removal of clusters of nodes and a pretty awful condition without any effective treatment. Ongoing treatment includes wearing compression garments such as stockings or sleeves, proper diet, careful skin care, and fluid drainage.

[jasonfox]

I lived with this issue for over 2 years, gradually getting worse! My neck was the most affected area and I lived with the fear that one big infection could have closed off my airways as the swelling was in my throat and tonsils as well.

Steroids gave some relief, but only whilst I was taking them, as the swelling was back as bad as ever shortly after finishing a course.

In the end I had to give in and accept that FCR was the only way to give me some long-term (hopefully!) relief from this awful symptom of CLL/SLL.

I've recently finished the 6th and final cycle of treatment, and all the swelling has gone. In fact the bulk of it disappeared after the first cycle.

[Hoffy]

After infections sometimes nodes can swell and then go down a bit. If the CLL is progressing then it might be a need to start treatment. My nodes were very large in my neck and under my arms.

I am on a clinical trial with Imbruvica plus Venetoclax.

If you can get treatment with Imbruvica or other targeted therapies the nodes would go down in about 1-2 weeks. It was amazing!! Other treatment options would work as well.

The CLL society site would give you information on treatments as well.

Be well,

Hoffy