I am 65 yo male. W&W. First diagnosed in Jan 2019.
My hearing loss has accelerated in the past year and I don't think it's just because I'm getting older. I've done two hearing tests in the past 6 months. The most recent suggested a "catastrophic" loss of hearing in my right ear for no apparent reason. Prednisone helped to restore some of the hearing. I realize there's not much more I can do about this. Just curious if CLL might be the culprit. Thanks.
Hi
Are you on treatment?
I have hearing loss.. But it’s from my Ménière’s disease .. did you go to a ENT specialize? i was diagnosed 2016 with CLL now on treatment Imbruvica!
Wish you well
Littledab
Littledab:
No. Trying to avoid any meds until Richard Furman says I absolutely positively have to go on something.
I did see an ENT. He didn't see anything out of the ordinary in my right ear. It was the audiologist (post-hearing test), who was extremely concerned.
Thanks much for getting back to me.
TMwTP
I had good hearing till I was 6 months post chemo. I didn't notice. My eye doctor does a quick test and I failed in my left ear. That surprised me cuz I taught the Deaf and very sensitive to hearing issues. I am waiting a year which is March to have my hearing formally tested. I have heard other CLLers complain about hearing loss. But from my career experience it is normal to have hearing loss slowly and abruptly as we get older. You can see an ENT doc to make sure there isn't something else non CLL or age related. 💕
GMa27
Thanks for getting back to me so quickly.
Prior to both hearing tests, I had to see the practice ENT. He saw nothing unusual. It was the audiologist (post test) who raised the alarm.
After the ENT prescribed predisone for the "mini-stroke" in my right ear, he said I might have permanent, "catastrophic" hearing loss in that ear. The good news (so far), much of the hearing came back in 24 hours after I started the predisone.
Be well.
TMwTP
Hearing loss was my presenting CLL symptom in 1997. Hearing was restored with fludarabine treatment. I have lost hearing with each relapse and it has returned with each treatment course. Take a look at my profile and don’t hesitate to ask more questions.
gardening-girl
Gardening-Girl
It had to be frustrating to lose your hearing so many times.
Next time I see my CLL specialist, I'm going to bring up the hearing loss. It'll be interesting to 'hear' his response.
My IgVH Hypermutation Analysis was negative. Based on what I've read here and elsewhere, I'm not a good FCR candidate. Plus, Dr. Furman is not a big fan of chemo. He prefers to use the newer meds.
TMwTP
TMwTP, below is the abstract of the paper that convinced my oncologist to begin treatment. Dr. Polliack, one of the authors FAXed me the paper back in 1997 because it wasn't available online. I have a pdf made from a jpeg of the FAX if you'd like to see the whole 3 page paper. At the time he FAXed the paper he indicated that he had seen a second CLL patient with a presenting SSNHL symptom.
Leuk Lymphoma. 1993 Feb;9(3):269-71.
Sudden onset deafness as a presenting manifestation of chronic lymphocytic leukemia.
Nageris B1, Or R, Hardan I, Polliack A. Izhar Hardan
Hadassah University Hospital, PO. Box 12000, Jerusalem, 91120, Israel
Abstract
An unusual patient with typical Rai Stage 2 (Binet Stage A) chronic lymphocytic leukaemia (CLL), who presented with sudden onset deafness as the initial manifestation of disease is reported. This sensorineural hearing loss improved dramatically after the administration of chemotherapy. This unique observation was also associated with reduction of the circulating B-CLL cells and with the achievement of a partial response, lasting for almost three years. Recently there was another episode of sudden deafness, associated with a rising leukocyte count, and disease activity followed once again by recovery after chemotherapy. Audiograms were recorded showing positive findings on presentation and recovery after therapy. This very rare manifestation of CLL was presumed to be due to infiltration of the cochlear duct or the 8th cranial nerve although all imaging techniques were negative, because of the rapid relief and recovery achieved after specific chemotherapy. The importance of early diagnosis and therapy is stressed in the light of the rapid clinical recovery observed here.
tandfonline.com/doi/abs/10....
Best Wishes and let me know what Dr Furman has to say.
gardening-girl
Hearing loss was not even a notifiable side effect of medications until the 1990’s. There are still over 200 ototoxic drugs on the market today. As someone whose hearing was smashed by drugs, and now has bilateral cochlear implants, I am living proof.
Check out your medications and look for anything that might be ototoxic for some people.
Justmoi
A potential culprit, besides old age, is NSAIDs. I have osteoarthritis that flares up from time to time. About 6 months ago, my bone specialist suggested I try meloxicam. I was on it for 3 months straight then stopped. I became very concerned about kidney toxicities. Did not have any issues with my hearing.
Now I take meloxicam PRN - maybe once a week.
Appreciate your feedback.
TMwTP
I had hearing loss due to my middle ear being unable to drain either due to sinus inflammation or swollen nodes. Steroids were the only thing that helped, but only temporary and you can't be on them forever. Since I've been on I & V trial hearing is back to normal.
john
JohnL
Got your message. I was otherwise healthy when my hearing went "south" in the right ear.
The office used the term "mini-stroke" in the ear. Never heard of that before. When I went on-line to get a better feel for my 'event', I came across the term - sudden sensorineural hearing loss (SSHL), commonly known as sudden deafness.
So far, the predisone has helped restore most/all of my hearing in the right ear but I'm not sure what's going to happen once I taper off the steroid.
Since I'm W&W, no CLL drugs right now.
TMwTP
Thank you for your post - was just the thing I was looking for. How are you doing now?
My husband woke up a couple of days ago and realized he couldn't hear in his left ear.
He saw the doctor today, who prescribed predisone for 2 weeks. He has labs tomorrow and a MRI early next week.
This came out of left field and caught us by surprise. My husband is also 65 and he completed his I/V treatment a year ago. He was U-MRD and as far as we know, is still in remission. Labs will tell us more tomorrow.
We're hoping the predisone helps but would like to know more about why he developed the deafness. My husband has an appointment with his CLL specialist next month, which will give us more of an opportunity to ask questions.
Best,
D.
Hi Mystic75
My hearing came back about 24 hours after I started taking 60mg of predisone QD. I stayed on this dose for 6 days then gradually down-dosed for 3 more days.
4 weeks later, I went back to be retested. The audiologist was thrilled with the results. She said I was very lucky. Most patients who experience sudden hearing loss, wait. I saw her and the ENT immediately. Apparently, doing that is key to a successful outcome.
I still don't know if this is somehow related to CLL. Please let me know what your husband learns at his next appointment.
Be Well. Stay Safe!
Man-With-A-Plan
Thank you SO much for responding! It is so helpful to have someone provide their own experience and I greatly appreciate it.
We called the ENT as soon as my husband lost the hearing but had to wait two days to see him and get the predisone.
So far my husband hasn't had much improvement but it may still be too soon. He was prescribed the same dosage as you were initially.
It is wonderful you had such positive results and so quickly - bravo!! Obviously, we would like his hearing to fully recover but we'll take whatever we can get. Right now we're more concerned about a CLL relapsed: however, that would surprise me. His WBC was under 4.0 (although his neutophils were okay) and his lymphocyte count was low in January. So we'll see when he gets his lab work back next week.
Will keep you updated after we know more next week. Thanks again for your input!
Stay safe as well!
D.
D.
Glad to help.
Wish my WBC was 4.0 once again. It hasn't been there since at least 2016.
I remain W&W but my WBC's trajectory is up. I see the hematologist in a few weeks. I'll find out then where things stand.
Man-With-A-Plan
The good news is that your WBC will be 4.0 again!
Based on your previous posts, it looks like Dr. Furman is your CLL specialist so you are in good hands. Plus, the options for treatment have improved a great deal. Although my husband had a few side affects when he was on ibruitnib/venetoclax, everything was managed and he never spent any downtime because of it. There have been a lot of success stories from these new treatments and now there are more options.
Btw, my husband realized when he was answering his cell phone a few minutes ago, that he had recovered some hearing in his left ear! He still has to have a MRI and a follow up with his doctor, but it is a good sign.
All the best to you and make sure you keep us updated on your hematologist appointment.
Take care and stay safe!
D.
D
That is great news about your husband's hearing.
We don't know how precious our 5 senses are until one or more start to fail or fail outright. 
I can still taste stuff. I can still feel things. And, most days, I can smell. Eyes can see but glasses are a must for reading/ looking at anything close up. Hearing works but only if I have both hearing aids in. Ah, the joys of getting older coupled with the challenges of CLL.
I'm going to send you something else about hearing and CLL. It came from Gardening Girl.
Be Well. Stay VERY safe!
TMwAP
D
Gardening Girl sent this my way about 3 months ago.
It's an interesting read.
TMwAP
*******
Below is the abstract of the paper that convinced my oncologist to begin treatment. Dr. Polliack, one of the authors FAXed me the paper back in 1997 because it wasn't available online. I have a pdf made from a jpeg of the FAX if you'd like to see the whole 3 page paper. At the time he FAXed the paper he indicated that he had seen a second CLL patient with a presenting SSNHL symptom.
Leuk Lymphoma. 1993 Feb;9(3):269-71.
Sudden onset deafness as a presenting manifestation of chronic lymphocytic leukemia.
Nageris B1, Or R, Hardan I, Polliack A. Izhar Hardan
Hadassah University Hospital, PO. Box 12000, Jerusalem, 91120, Israel
Abstract
An unusual patient with typical Rai Stage 2 (Binet Stage A) chronic lymphocytic leukaemia (CLL), who presented with sudden onset deafness as the initial manifestation of disease is reported.
This sensorineural hearing loss improved dramatically after the administration of chemotherapy. This unique observation was also associated with reduction of the circulating B-CLL cells and with the achievement of a partial response, lasting for almost three years.
Recently there was another episode of sudden deafness, associated with a rising leukocyte count, and disease activity followed once again by recovery after chemotherapy. Audiograms were recorded showing positive findings on presentation and recovery after therapy.
This very rare manifestation of CLL was presumed to be due to infiltration of the cochlear duct or the 8th cranial nerve although all imaging techniques were negative, because of the rapid relief and recovery achieved after specific chemotherapy.
The importance of early diagnosis and therapy is stressed in the light of the rapid clinical recovery observed here.
tandfonline.com/doi/abs/10....
Best Wishes and let me know what Dr Furman has to say.
gardening-girl
Yes, unfortunately we often don't appreciate what we have until we lose it. We take a lot for granted when we're young!
Thank you so much for reposting Gardening Girl's post. Very interesting and something to be aware of. This will make it easy for my husband to review it with his doctors - would be interesting to see what they say. I'm hoping it is just a virus and my husband didn't pull the 'rare' straw!
Thanks again and please stay safe as well!
All the best,
D.
Hello The-Man-with-a-Plan
Long name. That aside, I have been hard of hearing since I was 4 years old from measles. Really good reason to get measles shot which was not around when I was a kid. I am 135 db corrected in right ear and 86 db corrected in left ear. As you can see I am very hard of hearing and saw ENT(Ear, Nose and Throat) doctor before deciding on B+R. His father just happened to have had leukemia and had treatment which caused great hearing loss. The doctor told me not to have any treatment which used neurotoxic. The cancer meds which contain platinum are neurotoxic. After talking to 4 CLL Specialists and 3 H/O doctor decided on B+R which they said was not neurotoxic. I had hearing testing before and after treatment and hearing has not drop, but comprehension has droped from 93% to 86%. Maybe due to "chemo brain", ha-ha. Blessings.
Big_Dee:
Appreciate the story. I'm (fingers crossed!) not a candidate for therapy yet. If I must take something, I will stay away from the platinum-based treatments. Question - what is B+R?
Also, know a handful of folks who've experienced chemo brain. It's real. It's nasty. But, in most cases, things improve once therapy stops.
Be well. Thanks for the blessings.
TMwTP
Hello The-Man-with-a-Plan
B+R is Bendamustine + Rituximab is a milder form of chemo treatment than FCR. The "R" in FCR is Rituximab. The chemo brain does leave you in a bit of fog, mostly trying to remember little things like someone's name you should remember. You are quite right it does get better. Blessings.
Big_Dee
Appreciate the heads up on B&R.
My CLL specialist told me at our first meeting in 2019, he will never use chemo. Hates the long-term side effects.
He's a big believer in the "latest and the greatest"
TMwTP
Hello The-Man-with-a-Plan
I can understand that. I saw 4 CLL Specialists and 3 hematologist oncologists, all but one understood my choice of B+R over Ibrutinib. I am all most one year post B+R treatment and have no long-term side effects and do not take pill every day. I feel great, just like I never had CLL. When and if I relapse, I will consider one of the combo BKT treatments. We all have to make our own decisions and I am very happy with mine. All of the treatments have side effects, we just take our chances. Blessings.
Yep. Ur right. Everything has side effects. You made a very good choice for you. Glad it played out well.
For the foreseeable future, I'm going to do my level best to avoid therapy. But, when Dr. Furman says it's time to start meds, I'll won't hesitate to jump on-board the treatment train. My sister was W&W for 8 years. Her only regret - waiting too long before starting CLL therapy.
I have hearing loss, so far no doctor has said it may be related to my CLL, I'm w&w still untreated, but I feel like it might be. Over the years I have had a few infections which left me with more and more loss. I seem to have menieres too. I feel like it's all related but neither Hematologist nor ENT say it is.
JustAGuy:
At 65, I rely on (and trust) my "gut feeling" more and more. Like you, I believe there is a connection between my hearing loss and CLL. I'm guessing it's somehow related to chronic inflammation.
TMwTP
Very interesting question. I have horrible hearing but I never thought it could be related to CLL. I just figured it was from the defective military ear plugs or from sinus pressure. Gonna write this one down for my specialist appointment.
Cancerwarrior:
A while back, I heard about CLL & hearing "congestion". Didn't think to much of it at the time. But the longer I deal with this cancer, the more I'm wondering.....is there a connection? My hearing has been in decline for about 7 years. Unfortunately, this decline is accelerating. Part of the problem is genetic - my father was almost completely deaf by the time he died at age 82. Still, there's another part of me that wonders if the accelerated decline is somehow tied to CLL. Like you, I haven't discussed this with my CLL specialist yet. Next time I see him (July), I will bring it up.
If your specialist shares something interesting with you, please get back to me.
Thanks!
TMwTP
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