Hi everyone.
I am 44 and been on watch and wait for nearly 6 years now.
What I would like to know is are constantly swollen tonsils a usual symptom of Cll?
They are huge but relatively pain free and have been there for at least two years. I do find it difficult to eat and drink which is a pain but that's just due to the lack of space back there.
Thanks in advance for any help given, it's really appreciated.
Chucky.
As the tonsils are part of the lymphatic system, swelling can be due to CLL. I'm surprised that you are not experiencing discomfort, but maybe that only comes with infected tonsils.
Have you checked with your doc?
Hi there,
Swollen tonsils are definitely seen in CLL and can be a reason for starting treatment if they get so big that they compromise eating and drinking. It sounds as though yours are heading into that territory and that can be a concern.
I'm assuming that you've discussed them with your haematologist but perhaps you haven't given enough emphasis on the difficulties you're having with eating and drinking. If you don't have an appointment with your haematologist within the next few weeks or month I would ask to be seen so that you can be reassured or otherwise and a plan can be made to deal with them.
Let us know what happens
All the best
Jackie
ChuckyB,
I had my tonsils removed during my watch and wait time. They were very large and a cause of snoring, etc. Thankfully, not painful either.
They were checked post removal and were loaded with lymphocytes so I’d guess that your tonsils are enlarged due to CLL also.
My snoring has stopped now that they are gone.
Luckily, it’s a fairly minor surgery; the worst part was the pain in recovery, but that was manageable too.
Good luck!!
Hi Chucky,
Like Oaktown I had mine removed before second line treatment. They were crossing over and also affecting my hearing.
You will need to get a referral to ENT. My surgeon did a partial tonsillectomy which he said wouldn’t be so painful and he was right.
Good luck
Colette
Thanks Mrs Smith, I will get on to my GP tomorrow for a referral. 👍
I can’t see what country you are in ? But if U.K. and your hospital has an ENT department it might be quicker to ask your Haematology consultant rather than GP.Colette
I am in the UK.
Then I would suggest asking your Haematologist if they can get you a quick referral to ENT if they can. Sometimes going via your GP can be slow. Now I am in the system my charming ENT surgeon gives me a rolling 6-8 month appointment because he knows how difficult it can be to get appointments.Colette
I had a tonsillectomy done as well. The recovery was painful, I'm not going to lie to you but I'm so happy I had them taken out. I think you should go for it if you can.
I had no symptoms of CLL. It was picked up by very swollen tonsils which persisted for 3 weeks and then my wonderful GP got me an urgent appointment with my oncologist and the journey began. That was nearly 4 years ago. I had FCR a year after diagnosis and have now been in remission for over 2 years, my bloods are recovering (platelets and neutrophils on the low side) but I feel fine. I eat healthily most of the time and exercise which I'm sure helps mentally and physically. Clovis is my only worry at the moment. I hope that you can get a resolution to your throat problem. X
I’ve had large tonsils my entire life, but during watch and wait they swelled even more, not painful, but annoying, as sometimes I felt like I was choking when I swallowed. Removal was never suggested, but afterI started treatment with Ibrutinib, they returned to their original size.
I had large tonsils for many years and was told by PCP and ENT they were nothing to worry about. They completely resolved a few weeks after starting Ibrutinib and have remained that way.
A day in my life. It is very annoying. I have been doing a few things that seem to be worth a try for you.... test out a claritin every morning... I also tried echinacea and that seemed to give me relief too. I went for an exam to see if I should get them taken out and NO... that would be a nightmare. Are you waking up with dry mouth at all?
Hi gardengirl44
Thank you for your reply. Yes I am waking up with really bad dry mouth and when I actually get to sleep I have been snoring really badly.
ChuckyB, welcome to the fun world of CLL. In late 2009I had a huge growth in my throat that was inhibiting my ability to eat, etc. and when i alerted my hemoc he immediately ordered an ENT exam.
"My God, i've never seen modules that big! They're huge, "said the EMT as he's probing my throat with a nasty scope threaded through my nose.
It turns outs that there are lymph glands in our throats and mine had swollen big time thanks to CLL. As you know, we're prone to having lumps on our neck from swollen lymph glands and i had those too.
The ENT offered the choice of surgery to chop out the lymph gland (I had my tonsils out when i was 5 years old) but warned that the surgery could damage my vocal chords.
My hemoc said the swollen gland in my throat meant it was time for treatment. My numbers at that time were going up no where near the traditional chemo threshold.
Because of my 11q/unmutated/complex karyotype Dx, traditional chemo (PCR, BR), my 11 clcyes of chemo failed after a few months. Then i went on ibrutinib and the lymph gland disappeared in a few weeks. And it hasn't come back, 12 years after it first appeared.
Indeed, i'm uMRD for almost a year after 5.5 years of ibrutinib and 1.2 years of venetoclax.
As others have said, you need an ENT appointment. At this point in the treatment world of CLL, it would seem it's time to have an ibrutinib/acalabrutib discussion with your specialists, etc.
good luck.
Thanks so much for your reply, it was extremely informative. I honestly can't say I'm looking forward to the tube down the nose and throat but if it gets to the bottom of it I will be happy,
Thanks again.
Hi ChuckyB
My situation was almost exactly the same as that experienced by OaktownN.
In addition to no longer snoring, the main benefit was the reduction of infections. I have been w&w since 2015, operation was in 2019.
Good luck.
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