how many area of lymph nodes would warrant treatment

[Maxi444]

how many area of lymph nodes would warrant treatment… I have several lymph nodes on both sides of my neck one at the base of my skull one under my chin and several under both armpits one possibly in rib area but I sure … I’m going to see the consultant tomorrow but I’m just trying to be more prepared if anyone can help with this question that would be great thanks

[AussieNeil Partner Administrator]

It's the size (over 100mm or 4 inches on the longest dimension) and in some cases the position, which dictate the need for treatment, not the areas. See this post for more information on the triggers for starting treatment.

healthunlocked.com/cllsuppo...

Neil

[Maxi444 in reply to AussieNeil]

Thank you so much 😊

[cajunjeff]

Hello Maxi, in furtherance to what Neil wrote, the international workshop for cll (iwcll) has published treatment guidelines for doctors to use when deciding whether to start treatment:

ashpublications.org/blood/a...

It’s important to note that these criteria are “guidelines” for doctors, not hard and fast rules. By way of example, platelets under 100 is a guideline to treat, however, if a doctor has a Cll patient who is otherwise doing well and has had stable platelets of just below 100 or so for a few years, then the doctor might wait to treat.

In your case the treatment trigger might be “symptomatic or progressive lymphadenopathy”, that is, you are reporting an increase in the number, and I assume size, of your nodes. The guidelines do not provide for a certain number of nodes, just that they are a number of them and that they are progressive. Perhaps more important is whether the nodes are symptomatic.

Using the guidelines, if all your labs look good, and while you have many nodes, they dont hurt or bother you, your doctor might choose to wait to treat. Doctors also can have different philosophies on early treatment. Some doctors are more prone to treat earlier than others because they think early treatment might stall more aggressive forms of cll from evolving. Other doctors my think there is no survival advantage to early treatment.

And as Neil pointed out, the size of the nodes come into play. Any node bigger that 10cm might, on its own, be a trigger to treat.

Pace is yet another criteria your doctor will ask you about. If your nodes have very slowly increased in size and number over several years, that would argue for slow growing cll and maybe not treating now. If, on the other hand, you have suddenly had an increase in the size and number of nodes, that might argue for treatment now.

Good luck to you. You might write any questions down that you have for your doctor about treating. Cll treatment triggers can run in tandem, that is, as our nodes grow our platelets and hemoglobin can go down, so your doc will likely want to look at the whole picture and be less inclined to treat juts based on nodes if your labs are good

[Maxi444 in reply to cajunjeff]

Thanks for that …mine have just exploded in the past two years other symptoms too that maybe related I have got my notebook ready with a list of questions so I don’t forget to ask anything

[CoachVera55]

Yes starting treatment will take into account many variables. I was in W&W for 13yrs 8mos. (Aug 2009-April 2023) Bloodwork was decent with WBC in 20’s, Platelets 115 & Hgb 11-12s. I was living my best life, working 2 jobs & raising my children as a single Mom of three. I was very aware of staying away from infectious situations even as an ICU Nurse.

2020 hit & my numbers went crazy, I already had large amt but small lymph nodes that were painless all over. However in 2020 I was having more abdominal pains that was diagnosed as Diverticulosis. We managed it but the pain was getting bad, WBC jumped to 30’s but Onc said everything was still good. I became more fatigued & brain fogged so I requested a Ultrasound & it showed more than the Pet Scan, Liver & Spleen enlargement now. Then I could not digest food & requested a Cat Scan & sure enough multiple water balloons throughout my chest, abd & pelvis, none over 5cm but just so many.

I was considered stage 4, when my WBCs went from 49 with a 6 week sinus infection to 89 in Oct 2022. I started treatment April 2023. I am now stable on 1/4 dose of Zanubrutinib after 3 ER Visits in 3 Months. I hit my 5th month on these amazing BTKI Therapy & now just seeing 2nd opinion Pulmonary & Cardiology MDs because the first team dropped the ball. So GODSPEED, listen to your CLL Specialist, do your own research & see how your body responds because we are all different.

Last thing, make sure that you are not fighting an infection because W&W is a beautiful place to stay. All the treatments have toxic potential side effects, so there is no rush🤷🏽‍♀️

The guideline I followed

[Maxi444 in reply to CoachVera55]

Thanks for that Info , I’m just concerned I go tomorrow and they say I need treatment it’s kind of freaking me out the thought of it as I’ve read about side effects not being very pleasant . My body in the last few years just seems to have one thing after another going on wether it’s the liver pancreas joint pain or spasms it’s never ending off work at the moment as I work in a medical ward and even the thought of it makes me fatigued and my stress levels are mega at the moment . I was always extremely active before so it’s just trying to get used to this new normal adjustment too I’ve written lots of things in my notepad for tomorrow to ask but thank you for giving me the information keep well 😊

[SofiaDeo in reply to Maxi444]

Not everyone has med side effects. If the CLL is impacting other things/causing symptoms, you likely will feel much better once the CLL is removed, remember.

[Maxi444 in reply to SofiaDeo]

Thank you 😊 …I’m hoping he tells me I don’t need treatment but it’s good to hear other peoples experiences aren’t all bad with meds just incase I have to go on them. Think my brain is frazzled and going into overdrive with all this .

[SofiaDeo in reply to Maxi444]

I think if one reads this Forum, one gets the idea that side effects are numerous and severe. But people who are breezing through treatment, or whose disease isn't causing a problem, may not be on a site like this. I know I didn't join until Treatment #3 caused problems for me. A neighbor of mine with CLL doesn't care to be on the internet At All, he's older.

I do think the words "cancer" and "leukemia" in our diagnosis mess us up mentally and emotionally,

[Maxi444 in reply to SofiaDeo]

I totally agree with you about the words causing emotional and mental distress

[73wcll]

Hi Maxi444: I am about to start treatment due to enlarged nodes. One on the side of my neck just under the ear is about 4+inches, and according to my CLL specialist my spleen is very large. I also tire quite easily.

I go in Monday for initial lab work CT scans etc. then start treatment. He initially has me on Prednisone to reduce the lymph nodes.

My feeling is that some of the side effects can be managed while the direct effect of the CLL isn't managed without treatment. I am looking forward to days when I can do more without getting exhausted and also not having the large lump on the side of my neck. I also have several other lymph nodes that are a lot smaller and don't show.

[Maxi444 in reply to 73wcll]

Hi hope it go s well for you and you get some energy back

I have been totally exhausted since being told but not sure if it’s my adrenaline that’s crashed or a genuine fatigue from this

I’ve got a ct scan to go for this week so I’m hoping it’s ok