Ygaut living with cll

[Willowbug]

I was diagnosed with cll/sll about 2 years ago and I’m still in the watch and wait stage. This is a confusing disease because I look healthy but I don’t feel healthy, and family has a difficult time understanding that. I’m starting to get swollen lymph nodes in my neck and although they are not painful, they do cause discomfort. I’m wondering if they can also cause my chronic hoarseness. Sometimes I have great difficulty talking and then it just goes away. Anyone else experience this? Thank you!

[GMa27]

Nodes in our neck can be literally a pain. I had them pop up in my 9th year of W&W. It hurt to turn my neck to drive. Never effected my voice. Have you have scans lately to see what they are effecting?

As far as your family...just tell them it's a chronic invisible type of disease- except for nodes that could pop up which you have. You don't need to convince them of anything. The more you try to convince- the more they will be in denial. They don't want you to be sick. Depends on which family members...those that live with you and see you all the time or far away. Maybe they could sit in on your next Telahealth visit or go with you to your next appt. 💕

[ygtgo]

I've just comnpleted my 15th year on W&W ... "But you don't look ill" ... is a phrase I hear from time to time.

Just say "Thank you" as if it was a compliment and leave it at that ...

Don't waste you time trying to explain everything ...

If anyone wants to make a deal out of it, just point them in this direction and tell them that it's best for them to look it up for themselves as it's 'complicated' ... don't waste your breath on scepticism.

ygtgo

[morepork in reply to ygtgo]

Funny you should say that - yet again someone has just said "But you look so well !" to me. 😊

[Suzie42 in reply to morepork]

I'm always getting that said to me, but I will sit outside as much as possible so my skin always looks good but I feel awful.

[cllady01 Former Volunteer]

Ymgaut, the following link is a rundown of the causes for hoarseness. I hope it helps you sort out the possibilities for your situation. And, taking that which is a possibility to your PC/GP for discussion and exam, would be a good action to take, as some situations can cause problems over time.

healthline.com/health/hoars...

[Willowbug in reply to cllady01]

Thank you for the info it was very informative.

[Cfar]

HiYes I have similar problems to you in terms of hoarseness and needing to "clear my throat" sometimes in order to get my voice sounding like it normally does.

I have enlarged lymph nodes in my neck too.

I was examined by ENT and diagnosed with Silent Reflux which surprised me as didn't have any symptoms of acid reflux etc

I've been taking medication for the past month and changed my diet a little but haven't noticed any difference as yet. Perhaps its early days?

Additionally I have been working as psychotherapist/ counsellor for 25 years and it was suggested by my ENT consultant that the "over usage " of my vocal cords could also be a contributing factor and probably not connected to CLL.

Who knows???!!! That was her opinion anyway.

I now only see two clients a day with two hours between appointments as my "voice" aches after an hour and changes so perhaps it is wear and tear after all!

[wizzard166]

Hey Ymgaut

I'll be three years on April 18, and I too look fine but most days am too tired to last through the day. Fortunately I can work from home due to the pandemic, and I am my own boss, so I can take breaks and lie down for twenty minutes; then I feel refreshed. I've had the swollen lymph nodes in my neck on the right side, and a couple big ones lifting over my left clavicle for a while now. Otherwise I feel and seem pretty normal. I too have had the horseness in the throat a little bit on and off.

Overall I've learned to just relax. Most of us will be in this Watch and Wait for the long haul, and I guess Ill get more and more tired. I also get what appears to be a cold starting, sometimes once a week, and then in twenty four hours its gone. In the beginning i was angry about this Watch and Wait, and then I came to understand that we don't want to get treated. The treatments can work fine, and then again they can damage you severely.

Good luck with your progression, and lets hope you never need treatment.

Carl

[Willowbug in reply to wizzard166]

Have you had any issues with nausea? I get it often and take zophran which helps sometimes.

[wizzard166 in reply to Willowbug]

I'm pretty certain nausea isnt a common symptom with CLL. I happen to have a condition that developed over half a year ago, and I've been just living with it. After eating any decent size meal, but even smaller ones, my stomach for hours has a swishing around of liquid in it. I can actually feel it swish from side to side as i walk. I think from a Google search it is Gastroparesis.

[Willowbug in reply to wizzard166]

Thanks for the info, i was afraid of that. I guess I’ll have to talk about this with my oncologist. Take care of yourself!

[gfjm]

Hi I'm new to this site and wanted to ask the same question as I'm having the same symptoms. I noticed it was 3 months ago since you posted have you by any chance found anything to help? Thankyou .