How fast or dramatic is lymph node enlargement?

[Chicagogirl]

I've been reading the posts about symptoms and enlarged lymph nodes is frequently mentioned. Since I was never one to pay much attention to these things, I'm not sure what mine felt like before diagnosis. Now I have a couple that seem to me to be larger than would be normal, but not the way some describe as "visibly enlarged" particularly in the neck. Mine are in the neck near my ear. My next appointment is months away, and I assume this is not emergency stuff. Just wondering if this symptom ia a gradual one. Thanks, the personal experience info on this site is very helpful.

[Beadsy]

On a similar theme, I've been an avid follower of this site but have never posted anything previously. I was disgnosed 15 months ago which was then traced back some 2 years previous to this. I'm 56 and on watch and wait, all my bloods are reasonably low and progression is slow. At diagnosis i had a CT scan which revealed various clusters of lymph nodes on the upper limit of normal size. I have surface nodes that can be felt by touch all over my neck from around my ears, under my chin, down to my collar bone and around the base of my skull. I can also feel them under my arms, in my groin and in the inside of my elbow. They're always present, and sometimes appear to be larger than other times; they are painful from time to time. On average they are pea to bean size. My haematologist isn't concerned to any great extent , saying 'let me know when they get to the size of a plum' (I think she likes fruit!). While I get on with everything as normal and try and live life to the full no one has been able to offer an explanation as to why this should be. Thoughts?

Beadsy

[grizzlebear in reply to Beadsy]

Maybe in explanation as to why your not on treatment is that its a lot of factors that add up to treatment. The size of mass + general health + blood counts+ ALC doubling rate + b symptoms all add up to treatment being better than not treating. FCR is a very powerful poison and should be the last choice.

[grizzlebear]

If they are just under the ear right on the bit where your jaw bone goes vertical then they are submalinder glands. If they are on the turn you will feel they are going rubbery and are not pliable. they should be nice and soft. These glands may swell if you have a cold but then go down. Mine went from not visible to just under a golf ball in about a year. I couldnt hear fron 1 ear as the gland had shut my ear canal off. I looked like Frankenstein, however after 2 sessions of chemo they are now around 25mm and feel like a broad bean. this is classed as acceptable but i may have radiotherepy after chemo on 1 of them. Dont worry until people start saying "what the hell is wrong with your neck"

[bandsman]

I can only relate my husbands experience, he had small swellings on the neck and in the arm pit which eventually grew to the size of an egg (neck) and half orange (arm pit) and a ct scan showed swollen nodes in chest and abdomen, he has just completed 6 rounds of FCR and nodes no longer evident and recent scan showed some shrinkage internally, hopes this info is of use to you, welcome to the forum

[ThreeWs]

Hi Chicagogirl,

Your question can only be answered in generalities give the heterogeneity of CLL/SLL. What makes the CLL cells migrate and adhere to the lymphnode tissues is not well understood in that it is not universally the same experience for each of us. If your noticeable or accessible external lymphnodes are increasing in size by the month then it is an indication of aggressive disease. All the action takes place in the germinal centers of the nodes and in the bone marrow. CLL cells in the blood are less biologically active and do not represent the same level of concern as the amount of cells found in the nodes and marrow.

When and if you need treatment and you have extensive node involvement you would want emphasis on treatments that work in the nodes. Kinase inhibitors are quite excellent in this regard.

Very painful and hard nodes, as opposed to, not painful and rubbery nodes should be watched more carefully.

WWW

[Chicagogirl]

Thanks to all who replied. I now have both a better understanding of the nodes' involvement ( thank you WWW) and a better idea of the time frame and relevance of node enlargement. I was diagnosed almost a year ago , early stage, and on watch and wait. Just turned 64. This site has meant a lot to my peace of mind.

[Cllcanada Top Poster CURE Hero]

Lymph nodes can "pop" overnight if you are fighting an infection or illness, they will return to normal after the battle of the immune response is over...

Some CLL/SLL patients report that their nodes wax and wain in size... if you have concerns about your nodes see your haematologist, he may want you to have a CTscan to see what your internal nodes are up to...

[rebecca23 in reply to Cllcanada]

Hi, I'm just on here researching due to a pesky inguinal gland that keeps swelling up to about the size of a grapefruit this time. It started and within a matter of hours it was up the right side of my abdomen past my belly button. When it happens I get extreme weakness in my arms and legs and wind up in a wheel chair. Last year when this occurred I was told that it was my body fighting shingles. but this time there' s no shingles and I was startled at how quickly things went bad. I've only had a ct done in which they said it was the size of the softball and said they didn't know how i was even walking. I've asked for it to be removed, biopsied or anything to have in black and white what's going on. I am part of a shingles support group and none of them have ever had this to this degree. Just looking for some answers. i appreciate any feedback. thanks in advance.

[AussieNeil Administrator in reply to rebecca23]

Hi Rebecca,

I'm sorry, but given this group has nodes that are affected by just one of many causes of swollen nodes, we really can't provide you with much help with regards to your research. Your best option is to continue to push with your doctor for referral to a specialist to try and find what's causing this distressing condition.

Neil