Standstill

[Tracylevi12]

Hello

48 and new to cll. Just found out 2 months. Feeling alot of pressure in neck. And yes its aggressive. Any remedy to relief

[Cllcanada Top Poster CURE Hero]

Best see your doc... might be nodes, and some patients say they get relief from Castor Oil packs... you can buy or make them.

~chris 🇨🇦

[Tracylevi12 in reply to Cllcanada]

That's kinda what I'm thinking. But we are having snow storms every other day here. Way over this winter. Haha

[Newdawn Administrator]

I have extensive nodes in my neck, jaw, clavicle, occipital and parotid areas. There is often a feeling of pressure and sometimes the jaw nodes press on nerves. I use pain relief like paracetamol and a wheat bag heated in the microwave to give relief. Any cloth warmed would have the same soothing effect.

When you say ‘yes it’s aggressive’, what are you referring to Tracy? Do you have more unfavourable chromosomal markers? CLL can be more progressive and fast moving but it’s rarely described as ‘aggressive’ as in solid tumours.

Regards,

Newdawn

[Tracylevi12 in reply to Newdawn]

By doing the fish test was to determine slow or aggressive and I had both muted and unmuted. Without looking at results cant explain as well. Does that make sense?

[Newdawn Administrator in reply to Tracylevi12]

Not really Tracy. The FISH test doesn’t tell you your IGHV mutational status but would reveal if you had a higher risk genetic profile like 17p deletion. You can’t be both mutated and unmutated. Presumably the doctors told you there were markers associated with a faster progression?

Newdawn

[Tracylevi12 in reply to Newdawn]

Your right that was the test that determined it. I'm just now starting out reading and watched video that explains more to me. I don't see my doctor till April 30 .

[Newdawn Administrator in reply to Tracylevi12]

Well best wishes for your appointment.

Newdawn

[MsLockYourPosts Passed Volunteer in reply to Tracylevi12]

Stay away from google! Lots of old and incorrect information. cllsociety.org has a good section called The Basics. There are also some excellent videos on patientpower.info done by Dr. Susan Leclair about understanding your labs.

[thompsonellen]

I was 47 when diagnosed with aggressive CLL. I don't have guidance about dealing with the pressure, but do see a CLL specialist ASAP. I starting taking a real dive within a month after they told me I was 17p deleted. But I am doing well now, so you can get through this.

[Panz]

Please limit you posting to community only...safer for all of us. ☘️🙏😍💕