Question about lymph nodes

[Dgdr]

To the people with SSL representation, how do your lymph nodes feel when you palpate them? (hard/rubbery/soft/squishy/firm/moveable/conglomerated/tender/big/subcentimeter/round/oval etc)

[Wendy328]

Mine are hard:rubbery moveable. Sometimes tender neck ones feel differently than collar bone area.

[Dgdr in reply to Wendy328]

Same, neck ones are different than others, groin ones are almost squishy

[sllincolorado]

I have SLL. Mine vary by location and timing. I tend to feel pain only during a "growth spurt" but otherwise not painful or tender.

Right now:

Right underarm - Large, firm, slightly mobile, like having half a baseball under my arm. But more oval than round. About 3.5 inches across.

Left underarm - Much more mobile than right (probably due to size), about two inches. Oval.

Right groin - multiple largish nodes, clustered together. Firm, Less movable but there is just less room to move due to location. Oblong, firm.

Left groin - Two medium nodes, oblong, firm.

Neck - Looks and feels like there are rocks in my neck. Hard, limited movement, more round than other nodes. Many nodes about the size of a walnut.

[Dgdr in reply to sllincolorado]

Do they wax and wane, or remain firm? mine are quite small but new ones keep appearing and they stay the same size

[sllincolorado in reply to Dgdr]

Prior to treatment there were three that I could feel that stayed pretty much the same size for two years. Fairly small and did not interfere with daily living. Occasionally some new nodes would temporarily appear. Seemed to be in reaction to a small infection or cold. Then they would go away but my 3 main nodes would remain.

[Dgdr in reply to sllincolorado]

how did the 3 main ones feel and where and how big were they initially? Sorry for asking two many questions i haven't seen many discussions around ssl all the talks are centered around cll.

[sllincolorado in reply to Dgdr]

Ask as many questions as you want! I am just glad you are asking SLL specific questions. I know the docs say it is the same thing but really I have found that basic things like blood counts are critical for CLL but for SLL they do not always reflect what is actually going on. I am also not convinced that during treatment SLL reacts in the same way as would be expected for CLL. I do not think the blood counts during and post treatment really tell the SLL story. I know most docs will disagree but I am only going by my own situation.

Here is what I pulled from an early CT scan in 2016 - they list 5 notable nodes.

Right axillary (arm pit) 18 x 13 mm (.7 inches x .5) I could feel this one a little bit. Firm and mobile at the time Oval. Did not bother me.

Left axillary (arm pit) 14x12 mm (.55 x .47 inches). I could not feel this one.

Left iliac (pelvis) 45x22 mm (1.8 x .9 inches) - I could not feel this one.

Left inguinal (groin) 18x 14 mm (.7 x .55 inches). I could feel this one. Firm oblong. Did not bother me.

Right inguinal (groin) 25x11 mm (.9 x .43 inches). This is the very first node I felt and where I had initial biopsy. Firm oblong. This is the one I checked the most often to see if things were progressing.

The three I could feel were firm, not painful and did not interfere with my life at all for two years. At about 2 yrs after diagnosis the ones in my groin increased in size and started to interfere with me being able to hike (not terrible but not great). At that time nodes on my neck started to become visible. This coincided with my ALC starting to double in 6 months so this was the reason to start treatment. Treatment with acalabrutinib melted nodes away fairly quickly and ALC was back in normal range after about 6 months. Acalabrutinib worked very well for about two years. Then my nodes started to pop back up and that combined with subtle but consistent changes in blood counts indicated that I needed to change treatment.

Note that I have challenging markers (unmutated, 17p deleted, tp53, notch1) so my progression, and need to modify treatment, was not unexpected. You may have different markers and could be on watch and wait for a very, very long time. Or you could have an initial treatment that lasts for many years. Or you could have challenging markers and still not need treatment! This is the fascinating and frustrating part of SLL/CLL. Very hard to predict what will happen to a given individual.

Very long answer to your question

[Dgdr in reply to sllincolorado]

Thank you, great insight ❤️

[Dgdr in reply to sllincolorado]

Did you have any symptoms except lymphadenopathy?

[sllincolorado in reply to Dgdr]

I was bloated and had some gastric issues around the time I was diagnosed but was told it was not related. Spleen was normal size so that was not cause. I had no other symptoms. No fatigue or night sweats or infections.

Just checked symptoms list at CLL society I did over react to mosquito and bug bites .

How about you?

[Dgdr in reply to sllincolorado]

Just swollen lymph nodes and frequent sinus issues, but i had cfs/me so maybe that was related too

[ClassyLady3 in reply to sllincolorado]

I so appreciate this separate discussion of SLL as I also feel that my SLL is most prominent.

[Jemorgen]

Most of my nodes are too deep to touch but my other nodes were firm, rubbery, and moveable. Some were round but most were oval. The palpable ones were up to about 3”. The internal ones were way bigger.

[Dgdr in reply to Jemorgen]

I see, i wonder why the ones in my groin are soft, appeared out of nowhere but are still small according to my onc

[Jemorgen in reply to Dgdr]

I don’t think there’s a rhyme or reason to SLL. Some nodes come and go, get bigger then smaller. Sometimes they hurt and sometimes they don’t. I had some groin nodes in 2018, one of which they biopsied. It was about 1.5 cm. I have a few around that size now and my onc considers these small. I have some internally (mesentery) that are 12 cm which he also considers small but all together they seem to be wreaking havoc. I don’t think we can think of CLL/SLL in it’s bits and pieces - it’s the whole that helps us understand the impact and what to do about it. On paper my diagnostics look good but put it altogether with my symptoms and it’s definitely time to treat.

Keep asking questions. Curiosity helps build understanding.

Heather 🇨🇦

[Dgdr in reply to Jemorgen]

Thank you for the answer ❤️

[Dgdr in reply to Jemorgen]

What symptoms did you have at diagnosis?

[Jemorgen in reply to Dgdr]

Very little at diagnosis. I was waiting for a melanoma to be removed when a lump popped up on the back of my neck and everyone went into high gear. I’ve written about my symptoms as they increased. Just click on my name/icon and it till take you to my posts. Happy to answer any questions any time.

Heather 🇨🇦

[Dgdr in reply to Jemorgen]

Thank you, i will go look at your posts now

[czbm]

I seem to have them everywhere - neck, axillary, lung, porta hepatis, mesenteric, retroperitoneal, iliac chain, pelvic, and inguinal nodes all are noted on my last CT scan. Largest was 3cm. Spleen normal. I'm untreated. I have another scan scheduled in September to follow the progress. My impression is the ones I can feel or see have grown. Those in the neck are firm and moveable. Under the arm they are longer and visible but don't move around. The inguinal nodes change from soft to hard and go up and down in size. The others I can't palpate. It's hard to keep my hands off the ones in my neck because there are so many. My blood work is normal except for platelets which was 121 last visit in February.

[Dgdr in reply to czbm]

I'm the same, all blood work is normal except low basophils and mild neutropenia from time to time which resolves on it's own

[ClassyLady3]

I have a mixture of fixed and movable, tender and nontender. Various sizes with the largest being the oblong ones at right iliac/ groin. Most are tender and painful. There are multiple mesenteric scattered throughout my abdomen. I have to wear maternity pants as regular pants crush the lymph nodes and stop any flow of lymph fluid.

My question to the group is will these lymph nodes actually respond to the Imbruvica and shrink? So far, in 4th month of treatment, they seem to just stubbornly remain.