CLL and Eustachian tube blockage

[nigeldodd]

CLL causing Eustachian tube blockage? Does anyone suffer from this condition? Is it possible for the lymph nodes in the head to swell making drainage from the Eustachian tubes difficult ultimately causing deafness?

[SofiaDeo]

Swollen lymph nodes in the head can affect hearing, but IDK if or how the Eustachian tubes may play into this.

medicinenet.com/enlarged_gl...

[teakbank12]

ENT informed me many years ago I had blocked eustachian tubes.I have repeatedly had chest and ear infections.

Terrible headaches from these sinus problems. I also have a deviated septum.

Dave

[Jooby59]

I have a blocked eustachian tube and a retracted eardrum - both of which started when I began Venetoclax. After lots of research I can find no connection but it's odd as never ever had ear problems before! I have got used to it now as no treatment has cured it.

[GLB55]

I had this and ended up with tubes in both ears, instant relief. It was the beginning of dominoes falling in to place that finally pushed me over the edge to need and get treatment. The tubes really saved me at that time though when it started

[Createdpath in reply to GLB55]

I have had problems for years with my left ear. I have been to ent drs and they say they see nothing wrong. My last visit to the primary he said he sees that the tube narrows. Did you have problems of itching and fluid in your ears before the tubes?

[GLB55 in reply to Createdpath]

With blocked eustachian tubes I had a lot of fluid buildup in the ear and had chronic ear infections. The only solution was to put tubes in there ears for drainage. I then proceeded with FCR and have not needed any further action on my ears. That was in 2016

[jj411]

Yes and going through that right now and I am also on O & V for 7 cycles now. I have never had any marked ear issues but it has been traveling ear to ear but as Jooby59 stated there could be a link with the V.

[Newdawn Administrator in reply to jj411]

Interestingly it was the only discernible issue I had with Venetoclax. I had ear discomfort after taking it initially and I still suffer Eustachian tube problems and a sore jaw at times. I mentioned it to the dentist yesterday and he’s given me jaw exercises to do.

Newdawn

[MN1999]

I had the same problem as GLB55 -- before starting treatment my hearing seriously diminished. I had no idea my numbers were ramping up since I don't believe I even had an oncologist at that point. Ear tubes fixed the hearing -- and treatment gave me a nice remission.

[nigeldodd]

Interesting that Venetoclax has a bad effect on ears. My history: My eustacian tubes first became blocked with onset of pneumonia; I had grommet surgery; they became blocked again; repeat grommet surgery, and now they have become blocked a third time without any pneumonia. I am beginning to think there is some other pathology and enlarged lymph nodes are a feature of CLL. I am trying to get treatment to reduce the enlargement and then the grommet surgery might actually persist.

[nigeldodd]

I would be interested in hearing about which drugs did actually reduce lymph node swelling in the neck and head.

[mrsjsmith in reply to nigeldodd]

I had a large amount of swelling around my neck and throat. Even after a tonsillectomy. My ears were blocked and I was partially deaf. I also had a perforated ear twice.Luckily this disappeared when I started on Ibrutinib.I still have very small and twisted ear channels which need micro suctioning every year now. Impossible to access easily on the NHS so I go privately.

Colette

[nigeldodd]

GLB55 had FCR and I have heard elsewhere that FCR was effective in reducing neck swellings. How effective (or contraindicated) are modern immunotherapies such as BK inhibitors (Ibrutinib) and BCL2 antogonists (Venetoclax) at doing this?

[AussieNeil Administrator in reply to nigeldodd]

Enough time has passed on comparative trials so that reports are now being published showing that targeted therapies are out performing FCR. That's particularly the case for the tough to treat 17p del /TP53 cases, but unmutated IGHV cases also achieve considerably longer CLL management. Probably the biggest bonus is that FCR is not recommended if you are over 65 and there isn't this age limitation with targeted therapy treatments. With half of CLL diagnoses occurring after age 70 and a median time to treatment roughly 5 years later, that's a huge advance!

Neil

[ninap]

i have had many ear infections upon diagnosis with CLL. i was ultimately referred to an ENT specialist and found out i had an abnormality with my eustachian tube. i was prescribed a device that pushes air into one nostril while i press the other one closed and swallow, and also a nasal spray when i feel my ear is acting up. i'm also on SCIG weekly though - so no more infections. but then i'm also not going anywhere due to covid

[nigeldodd]

Thanks for replies. I appreciate FCR is now out-performed by immunotherapy. I was phoned by my specialist nurse last night who (without yet examining me) said that perhaps acalabrutinib might be offered. My new question is this. I have no reason to believe my bloods have changed much (WBC around 33); my understanding is that treatment normally begins when there is a rapid change in bloods; would treatment be indicated just solely to reduce lymph node swelling?

[81ue]

I'm on Venclexta. After 1.5 years on the medication I started to have this problem in one ear mostly, the one that rests on the pillow the most when I sleep. I'm aware of the congested feel and I can't hear well when I wake up. It may or may not resolve in the day. I reported it when the pharmacy wanted to know of any side effects. It's been like this for almost a year now, not painful at all (just congested and a bit hard to hear) so didn't mention it to my doctor, but I think I'll do it this time since a lot of you have it too.

[nigeldodd in reply to 81ue]

I am writing a follow-up to my swollen neck issue having seen a specialist nurse on Tuesday. My main question to her (and via her to the consultant) was to ask if there is any treatment for the swollen lymph nodes in the head and neck other than full CLL treatment. The answer was that there wasn't . I am to have CT scans to make sure the swellings are CLL-related. Then it looks like the treatment will be acalabrutinib, obinutuzamab, venetoclax. My bloods are unchanged (wbc 30), no night sweats, no exhaustion. It looks like the swollen lymph nodes are sufficient to justify full CLL treatment.

[AussieNeil Administrator in reply to nigeldodd]

So presumably the swollen nodes are blocking your eustachian tubes? It is possible to shrink nodes with radiotherapy, but if you have widespread problems in your head and neck due to swollen nodes, starting treatment makes sense, plus you may well have enlarged abdominal nodes too. There's a high probability of achieving uMRD on your proposed treatment. It did that for me.

Neil

[81ue in reply to nigeldodd]

I mentioned the congested feel today to P.A. and they say they don't see it as a listed side effect of venclexta and to go to a general doc or ear/nose/throat specialist to have a look

[nigeldodd]

Yes, AussieNeil, I think it highly likely that swollen nodes are blocking eustachian tubes. The CT scan will confirm.Thanks, 81ue, for excluding congestion as listed side effect of venclexta.

I wonder which of the three drugs, acalabrutinib, obinutuzamab, venetoclax, will have the greatest effect on reducing my lymph nodes, assuming they are prescribed.

[nigeldodd]

I am having grommet surgery again tomorrow. I saw my haematologist today and we decided to put me on Obinutuzamab and Venetoclax starting soon.

[SofiaDeo in reply to nigeldodd]

Maybe journal any sinus/ear symptoms going forward? If there ARE ear/sinus issues associated with the Venclexta, you might be thinking the surgery was a failure when it's a possible drug side effect. Remind the docs, Venclexta was approved & drug SE's tabulated on an extremely small amount of patients, compared to the numbers used for non-cancerous disease state drugs. I have confidence that the known, listed side effects are due to the drug. I do not have confidence in the percentage of patients experiencing such listed side effects overall, nor would I exclude any perceived side effect. It will take time & numbers to get more accurate results similar to drug experience with heart meds or diabetes meds.

[nigeldodd]

Do we know the mechanism for ear/sinus issues associated with Venclexta?

The compression of the Eustachian tubes by the very evident enlarged lymph nodes is the mechanism at work now.

[nigeldodd]

I had the first infusion of obinutuzumab last week. My WBC has dropped from 36 to 1.5, my lymph nodes seem to have shrunk and my ears have become unblocked. I can hear again.

[Poodle2 in reply to nigeldodd]

Oh, this is great to know! My ears are giving me problems and it's awful now as when it was just my left ear, I could cope. This week my right ear is getting blocked on and off as well and I really can't hear much. I should be starting treatment on Monday so I hope my ears get unblocked as well.

[nigeldodd]

My treatment is obinutuzamab weekly for a month then obinutuzumab monthly plus ramped up venetoclax. I am now on full dose venetoclax. I have had no side-effects and my lymph nodes have continued to contract to the point where I can't detect them. My hearing has continued to improve. It is now normal in one ear and 10dB down in the other, though I think it has equalised since testing.