swollen tonsils

[podris]

anyone have complications of swollen tonsils and their cll

[cllady01 Former Volunteer]

Podris,

I am not sure if your are saying your CLL has infiltrated your tonsils or that you have tonsilitis (infection). I can help if you can give more explanation as to what is going on.

Also, there are some previous posts by members with tonsil problems listed in the column RELATED POSTS on this page. There will others replying, but it might be helpful for you to read those already posted in the meantime.

[podris in reply to cllady01]

Thank you my Dr believes my swollen tonsils ,swollen for almost 4 weeks now , is related to my cll

[cajunjeff in reply to podris]

Podris, what cll lady was asking you is, if you know, what is causing your tonsil problem. Cll could cause tonsil problems in two ways. How to treat your tonsil problems depends on which way cll is causing the problem.

One way cll can cause tonsil problems is the same way cll causes other infections. Cll compromises our immune systems. You could have a tonsil infection because your immune system is weak. It might be treated with antibiotics or even an antifungal depending on the type of infection.

Another way Cll can cause tonsil problems is that your actual cll cells can gather in the tonsils, much like cll cells can gather in our spleens or lymph nodes. In that case one might need to treat their cll to solve their tonsil problem.

You should discuss with your doctor how cll is affecting your tonsils to better understand treatment options.

[podris in reply to cajunjeff]

Thanks Jeff the past couple of weeks has been a whirlwind with the CLL. My Dr. noticed it 4 weeks ago and said i might have to have them taken out sent me to an ENT and he said looks they need to come out .Now my oncologist believes it is my CLL and am getting ready to start treatment on ibrutinib.

[cajunjeff in reply to podris]

If it is cll cells in the tonsils and not a bacterial infection due to weakened immune system, treating the cll might take care of it without removing tonsils. Of course the doctor knows best, but drugs like ibrutinib chase cll cells out of the nodes and spleen very fast, so I assume it would be the same with tonsils. Good luck with whatever is decided. jeff

[Jm954 Administrator]

AdrianUK had problems with enlarged tonsils due to his CLL. I'm sure he will be happy to relate his experience. I've tagged him so hopefully he will respond soon.

Jackie

[Poodle2]

I had chronic tonsillitis (found that out after I had them removed) and a quinsy twice. When I had the abscess for the second time I decided to have a tonsillectomy. I didn't know I had CLL then but looking back at my blood tests my CLL specialist pointed our my lymphocytes were 5.1 when I was hopistalised with the quinsy and 9.2 when I was having the tonsillectomy done a year later. She obviously cannot say if I had CLL then but she feels it's quite likely. I believe my reoccurring tonsillitis and quinsy were a result of a malfunctioning immune system caused by CLL or MBL that evolved into CLL ...so I think it's quite possible. Can they refer you to see an ENT specialist?

[mrsjsmith in reply to Poodle2]

Poodle good suggestions and perhaps get your GP to see if you can get an urgent ENT appointment Podris. Post diagnosis I has quinsy and then a Tonsillectomy. I sympathise.

Colette

[podris in reply to mrsjsmith]

thank you the ship is going in thr right direction now everyone feels it is probably the cll

[mrsjsmith in reply to podris]

Hope you get to the bottom of the problem soon as it can be uncomfortable.

Colette

[podris in reply to Poodle2]

Hi Poodle yes they referred me to an ENT but between my oncologist and ENT decided it was probably theCLL

[AdrianUK]

Tonsils are lymph tissue. As such they can grow. I suspect my own CLL may even have started in my tonsils as a lymphoma. The reason I say that is that when my count was still relatively low and my other nodes were only very mildly enlarged (well actually technically they were all just "borderline" at the time but active on PET) my tonsils grew huge. There was an element of infection at times for sure with tonsillitis. But I essentially had a huge lymphoma trying to kill me in my throat. I heard from one other patient who had a similar situation a few weeks before me. It is not seen that commonly because people who are currently in the typical age group for CLL often had their tonsils removed as kids. My generation did not usually have that operation (I am 49 now). So I think we will see a lot more of this in the future. I have often wanted to gather some cases together so maybe we could even publish a case series with consent. I would love us to do things like that more as a forum since it is surprising how many things we know to be common among us are not well documented in the literature.

My tonsils and then my lingual tonsils both grew so large they started to meet in the middle and threaten my airway. I was admitted as an emergency and had the palatine tonsils out to basically save my life. They felt at the time it might well have been an aggressive transformation of the CLL as it was growing so fast.

So the idea was take the tonsils out in their entirety to minimus the risk of future infections (tho I have had tonsil bed ulcers and infections since fairly often sadly) and get a proper biopsy to ensure that I had not transformed. Clearly it might have been richters in which case aggressive treatment would have immediately followed. But it wasn't so please do NOT assume that a rapidly growing tonsil has to be an aggressive lymphoma.

I did not have systemic treatment at the time, and soon we also attacked the lingual tonsils before they became life threatening and had a good success by scraping them. This bought me a good few more months before starting chemo but for whatever reason after removing the tonsils things seemed to speed up more generally for my CLL and about six months or so later I did FCR as part of FLAIR.

My lingual tonsils have not grown back yet, but we do keep an eye on them as I have a hunch it might be the first place that I have recurrence, which would presumably mean that I was a bit like an SLL in that aspect at least. But of course there is no guarantee that will happen. To monitor palatine tonsils is relatively easy but the linguals require either a camera by an ENT doctor (I had difficulty swallowing and could feel a lump but not everyone has sensation apparently) or an MRI. Due to the covid19 situation I am a bit overdue a monitoring visit so we are doing an MRI next week.

[podris in reply to AdrianUK]

Thanks Adrian the ENT and oncologist got together and decided it is probably the cll causing my problem starting treatment on ibrutinib asap

[BATony]

After my tonsils lit up during a Pet scan it was decided to remove them at 54 years old. They were worried it might be another cancer so out they came. Let me tell you at that age it is not fun. But since removal I have had no issues.

[podris in reply to BATony]

Hi Tony at 66 i really wasnt looking forward to tonsil removal and that is my concern as well , that it is a secondary cancer, having a scope done to look down the throat to make sure. Am now going to start treatment on ibrutinib asap.

[Fussyflossy]

My tonsils definitely grew while I was on W&W. They were not painful, the only problem was that it took forever to eat a meal as I could only swallow small amounts of food. Doctors monitored what was happening, but decided that no action was needed. When I began taking Ibrutinib the tonsils, like my lymph nodes, reduced in size and are now back to normal.

Linda

[podris in reply to Fussyflossy]

Thank you for the reply .I have that trouble also will be starting treatment soon.

[Mprm]

All my life I had large tonsils, but as my cll developed they became huge and swallowing was difficult at times. I had periods during my five years of watch and wait when one tonsil would respond to a cold or sinus problem and get very sore with white spots. My hematologist said that as the tonsils are part of the lymphatic system their enlargement was caused by the cll, though it was a combination of symptoms that led to treatment with Ibrutinib. Once I began to take the drug my tonsils shrunk and only make themselves known now with infection.

[podris in reply to Mprm]

thank you so much my oncologist and i are now starting treatment after only 4 months watch and wait

[Gardengirl44]

Yes I do and I went to an ENT who specializes but not treating and not really getting any good answers. I also failed a sleep apnea test prior to being diagnosed... but really it had to be because of the inflamed tonsils. I will tell you that on a side, I have been playing around with what gives me a bit of relief and I am getting some from taking echinacea. Plus that's good for immunity.

[podris in reply to Gardengirl44]

Garden girl i have been on Imbruvica now for 8-9 months. That is an ibrutinib used for treatment of cll. My onconlogist is totally astounded at the results. The swelling went down in the tonsils and all of my counts are wat down to almost what they were before being diagnosed.

[Gardengirl44 in reply to podris]

Glad you are feeling better!!