First thanks to AussieNeil, NewDawn, et al, for their incredibly well informed contributions. Indeed, thank-you to all contributors for making this such an essential resource for people with CLL.
All was going well on W&W (IgHV unmutated) until my fifth COVID vaccination. I had quite an aggressive reaction which lasted for over two weeks with massively swollen glands under the arm which received the vaccine. Cause or coincidence? I have no idea; - but since that reaction eased off my sinuses (which have never been great) have taken a real hit. My uninformed guess is that chronic conditions which one normally accepts as ‘one’s lot’ in life become more challenging with CLL and prone to chronic infection. My symptoms are almost total congestion & deafness (in one ear in particular), constant headaches, tinnitus and withering fatigue. I reluctantly went to the Doc who said that my sinuses require an ENT specialist to have them drained. Meanwhile I have been on three different antibiotic scripts plus sinus pressure relieving tabs; all to no avail.
Any fellow CLLers been in the same boat? If so, any advice? Does this perhaps herald the beginning of treatment (I have been informed by my CLL specialist that Acalabrutinib is likely to be my first treatment).
As ever thanks to you all for making this such a friendly, indispensable and well-informed site.
P.
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Petroc
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Before making a treatment decision, I would see the ENT asap, as your doc suggested. If nothing else, the ENT may have a treatment that helps a lot of your current issues, and you'll be able to decide better with your CLL doc when you feel better.
Doctors have specific appointment slots for new patients, and there are only a few of them every month. Unless it is an emergency, one is put into the upcoming schedule, they don't fit you in to the one that's already out. In the US, anyway. So unless one is having urgent symptoms, one isn't seen quickly. For example, my pulmonologist retired, and before I got a new one, I had a respiratory incident where one of the possibilities was to *rule out malignancy* as seen by lesions on a CT scan. I was otherwise relatively healthy except for a cough, my lungs were clear, no temperature. It took mmm 3-4 weeks to get me in! And that was considered "fast" because of the "rule out malignancy" part of the referral. You aren't seen extremely quickly unless you are very ill, or there happens to be a cancellation and you can drop everything to take that slot. (PSA for US folk: if your schedule allows it, always ask to be put on the "cancellation list" if a provider has one, you might get lucky & seen sooner. Be prepared to code that doc's number into your phone and answer it immediately, staff goes down the list until they reach a person who accept the appointment. They won't leave messages unless your chart indicates it's OK to do so, ask all your docs about their phone policy & make sure yours is marked that voicemail is OK) So while I am sure a referral from a hem-onc is up there on the list, Petroc's symptoms aren't severe enough to make everyone jump. It's an unfortunate reality. And a major reason why I recommend that folk see a doc sooner rather than later, if possible, when problems crop up on the off chance other specialists are needed, it can take some time.
Just had confirmation that the CLL consultant is happy to bring the scheduled app (mid Dec) forward. All he requires is a recent blood analysis - so I’ll be off to the hospital next week to sort that out.
Has any doctor discussed or tried IVIG infusions to determine if that will reduce or eliminate your frequent infections? webmd.com/a-to-z-guides/imm...
This discussion from 3 days ago including the replies, includes some of the complexities:
Hi Len - no - that’s never been discussed. The burden of these constant infections is now becoming v depressing. I’m due to have an app with the CLL specialist next month so I will raise the issue. Thanks for your advice.
Does your oncologist receive email from patients via their hospital’s portal? I’d send along a note, indicating your continuing misery, and ask him/her if your IgG levels should be checked. I had 3 lung infections, one after another, for 3 months (lots of antibiotics), when my oncologist realized that I needed IVIG infusions. I had a port surgically implanted, and it has been a Godsend, regarding having labs run and the frequent IVIG that I have needed. Good Luck!
Yes the CLL mob in Leeds are an accessible lot. I’ve already made overtures o out bringing an appointment forward. Coincidentally I have a scheduled app for mid December and was thinking to give it another few weeks to see if the problem eases. In all honesty it doesn’t seem like it will. Notwithstanding copious antibiotics, if anything it’s deteriorated so I may have my bloods done next week so that they can fit me in earlier.
This was happening to me before I had treatment. The only thing that seemed to work on it was steroids, prednisone to be exact. So, when I'd lose my hearing, they would put me on prednisone for about a week, I'd get my hearing back and I'd be good for about a month or so before it would start happening again. My Onc wasn't too happy about me doing all those steroids, because they suppress my already bad immune system. In my case this was likely caused by inflammation and not infection because the steroids worked and the antibodics didn't. Anyway I haven't had this problem since I had my first treatment which was I/V.
Thanks John, I’m at my wits end as it’s depressing, debilitating & damned frustrating. Steroids have not been mooted so if I don’t get an app for the ENT specialist soon I think I’ll ask for the steroid option as a whole cocktail of antibiotics has, to date, done absolutely nothing!
I would go to ENT doctor. I had worse sinus drainage in my life which lasted from May until Aug of this year. I have had sinus drainage all my life, long before CLL. I too had some hearing loss, but I have had severe hearing loss just about all my life. I went to my GP and ending up with two rounds of antibiotics which helped, but still took some time to clear sinus. The sinuses are part of your lymph node system. I started V&O treatment about one month after clearing sinuses, but because of my dropping platelets, not because of sinuses. Best going forward, blessings.
Sorry you are going through this. I was in the same boat a couple of months ago. Please read my previous posts. Lots of great advice...However, nothing worked for me but treatment. Reoccurring infections, anaemia and enlarged spleen - this was all hand in hand and causing issues.
I would always get better on strong antibiotics and as soon as I would finish them, the infection would come back.
The only thing that worked for me was treatment.
I was deaf in one ear for a couple of months, on and off but solid 3-4 months before I started treatment and my second ear gave up on me about 2 weeks prior to starting treatment. I honestly didn't hear a thing, had to put subtitles for telly and kids had to shout into my right ear so I would hear what they want!
In one of the posts, someone said they went through the same and eventually found out their lymph nodes were blocking their eustachian tubes. I'm suspecting something similar happened to me, accompanied by a chronic infection. I managed to get over the infection only after I ended up in hospital with neutropenic sepsis 10 days into my treatment (please don't be alarmed, this happened as a result of being unwell while neutropenic and on treatment). It was only the strong antibiotics they administer for sepsis and the subsequent 10day course of Co-Amoxiclav that helped.
However, my right ear became unblocked after the first infusion of Obinutuzumab and my left ear after the second infusion. My other (palpable ) nodes on my face and head literally melted away as a result of the infusions so I believe my deafness was definitely caused by enlarged nodes.
Hope you do get better soon, the infection was making me feel very miserable and weak, I was feeling so down all the time...really hope you get better 🙏🏻 ❤️
Hi Petra, one ear is now practically gone. The tinnitus is becoming worse and the sense of pressure round the head seems to be deteriorating notwithstanding the antibiotics. I’m not sure if the sense of withering fatigue is my sinus pressure or depression (or maybe a bit of both) but the sense of isolation from the deafness is really frustrating. I’m coming to the conclusion that the only way of ultimately addressing these issues is to treat the primary cause, ie the CLL, consequently I think it’s time to push for Acalabrutinib at my next meeting with the CLL specialist. In the meantime John’s suggestion (above) regarding steroids may be a quick temporary fix.
This is what happened to me - at one point I thought my head would explode, and in fact one of my ears perforated and bled. I was partially deaf and because of swollen nodes I also had a squeaky voice. I eventually ended up in hospital with Quinsy ( I had no idea what it was ) and after a second stay in an ENT ward a senior consultant was asked to review me. He immediately said I wasn’t an ENT problem but haematology and he was going to write to them. Overnight I was taken seriously and haematology started me on a high dose of Azithromycin and monthly IVIG, and once I started Ibrutinib all those problems subsided 🤞. I also go privately to get my ears micro suctioned yearly.
I hope you get some relief soon, I was very miserable.
I totally understand you. I felt really down, it was very depressing. I couldn't really hold a conversation with people as I just didn't hear what they were saying and often just smiled nervously hoping it was the right facial expression in line with what they said. I hope your doctors try to find a way out of it.
Since we have numerous lymph nodes in our head around the sinus/ear area, treatment for the CLL may turn out to fix root cause of the problem. As others have noted, problems in these areas can indeed be caused by our disease. See what the ENT says about the status of that area.
I have also been struggling with ear problems, mostly my right one, loss of hearing and tinnitus. Some people have said that treatment helped with their ear problems. I'm not sure but I almost think treatment may have made mine a bit worse. I started on Obin and Ibrutinib and remember my ears feeling plugged during that time. I had to come off IB because of side effects and was in remission about 18 months and was preparing to start O+V when I ended up in the hospital with mastoiditis which led to a severe full body infection. My numbers were off the charts so I'm sure that was part of it. I'm only on the V now and doing great but still struggle with the ear issue.
I saw an ENT specialist thinking I might have to have surgery on my ear as there was fluid in the inner ear. But the surgery doesn't sound fun either, so I decided to leave it for now. The ENT said the plugged feeling I have is likely do to with hearing loss and that the fluid isn't a huge concern. If it wasn't for CLL he wouldn't advise surgery. Now that my CLL is under control, hopefully my ear will remain stable. I've come to live with it mostly, although once in awhile it still bugs as I'm saying what all the time!!
I did read somewhere that hearing loss can be linked to treatment, but I only saw that once. I've also seen other posts where others say it helped. Sorry, that doesn't tell you much but hopefully between an ENT and your oncologist you can find some answers.
This is an excellent video, although a couple years old I thought it very informative.
I was prone to sinus issues before CLL and had turbinate reduction surgery to address chronic sinusitis and borderline sleep apnea. The surgery did help on the sinus and, as long as I keep to a healthy weight, the apnea has been addressed.
Post-CLL diagnosis though I have had more issues than in the past with sinuses, mostly clogged up breathing. After some ENT and allergist checking, a CT sinus, and trying a few things, we settled on XHance, which is a reformulation of Flonase, a relatively mild steroid but is delivered via a plastic breathing tool at higher doses directly into the sinus cavity.
I won't say it has 100% cured the issue but it's been a big help, and Flonase is a lot better tolerated than some of the other steroids out there.
Because it's a reformulation, insurance and availability can be issues. I ended up purchasing direct through the manufacturer for $50/mo, which is a lot more than a straight up Flonase prescription in the US (more like $2) but a lot less than the unmetered purchase rate outside of insurance which can run $600.
I am still W&W for now so crossover vs. treatment has not been an issue.
I had numerous infections before my CLL was even diagnosed and because I was generally well, it was never considered necessary to do blood tests. I had ear and sinus infections, I was hospitalised due to camplylobacter and had fungal infections on my feet. I was diagnosed in 2018 and had three years of watch and wait before starting treatment with Acalabrutinib in 2021. Since then I haven't noticed as many problems apart from being a bit 'bunged ' up when I get up and a bit phlegm in my chest, this goes once I get moving.
Acalabrutinib is most certainly my best friend, my blood numbers are back in normal ranges and I feel really well.
My hubby might be the one mentioned above with lymph nodes blocking.... everything. His symptoms were generally just like yours. He had his vaccines and had a increased reaction to each one, but not just covid, also the shingles vaccine. He had been on w&w for more than 5 years but his blood work was still normal. Only a few symptoms revealed his Cll. He had sinus symptoms all of his life and we did not equate them to cll symptoms when he first went to the ENT specialist. Surgery was recommended due to ongoing "infection" congestion and difficulty breathing. In the meantime of getting baseline tests and scheduling surgery, he had more and more issues. ( Tinnitus, lose of hearing, breathing and sleep loss etc.) The ENT was shocked at the massive amount of lymph tissue in his nose, throat and sinuses and had to proceed carefully. He started treatment for Cll almost immediately....while blood work still showed little to nothing. He is on V+O and has had a VERY easy time of it. The infusions are done now, almost all symptoms have disappeared, he missed a total of one day of work. Doctor cannot feel any remaining lymph nodes and he healed well from the surgery. If he had done treatment first, he may never have chosen surgery at all. ( But he really needed it over the years anyway.) I venture to say treatment will be the thing that helps you the most. Also that I hope it is as uneventful as my hubby's and you have a "boring" story in a bit, like he does.
Hi Lady. This is me! My bloods are not super high and have been largely static for over a year (so naturally the CLL specialist is content with the W&W approach - and so was I). But the burden of increasing number of infections of increasing virulence (especially post vaccinations) in addition to the plethora of ineffectual antibiótics I am pushing down my throat is taking its toll on me physically (weight loss) and psychologically (social withdrawal / depression due to hearing impairment, tinnitus, fatigue, dizziness and an all round feeling of being a useless burden, etc).
I’m longing to have a boring story of commencing the Acalabrutinib and reducing the volume of unusual / atypical infections (for me) that have been cursing me and increasing over the last two or three years.
There are just too many coincidences between all these infections (which I hardly ever had) and the CLL). Indeed, it was a urinary tract infection (my first ever at the age of 58) that ultimately led to the CLL diagnosis.
Petroc: I suffered with sinus infections for over two years. Going to Dr.'s, Ent's etc. I had Chemotherapy, FCR, in 2015-16. A year after chemo, I came out of remission and was put on Ibrutinib. I started having sinus infections, got antibiotics then ok for about a month then had another infection. Had sinuplasty done and it lasted one month and then continued to have sinus infections. In 2019 I had pneumonia and was hospitalized. While in hospital was given IVIG. When I got out of hospital, I had enough and went to a CLL specialist. He put me on Acalabrutinib and started me on IVIG infusions. I had infusions every 4-5 weeks for 7 months. Since then I have not had any sinus infections. I do clean my sinuses with neil med sinus rinse. At first I did this daily, but now can do occasionally when I feel needed. The best thing I did, was to go to a CLL specialist. My life and treatment is better for it. I occasionally take Allegra or similar for allergy season. Currently it has been three and a half years since my last sinus infection. I look back now and wish I knew about finding a CLL specialist sooner. He was able to cut through all the red tape and get me the IVIG infusions.
Thanks Bill. Your experience dovetails with that of so many of you all kind enough to respond. Prior to submitting this issue I just thought ‘we’ll, it just another of the infections I’m going to have to accept’. I am now absolutely convinced it is directly caused by the CLL as I have many swollen lymph nodes on my neck and around my ears - especially the ear which is most affected by deafness and a sense of fullness. I think I’m going to bypass the ENT specialist and head straight for my CLL consultant (who has said that when I do start treatment (I am IgHV unmutated) the first option will be Acalabrutinib.
Have you had CT scans of your sinuses? For me, "chronic sinusitis" turned out to be physical impingement on my sinuses by swollen lymph nodes. The fact that I basically could not breathe was the trigger for starting treatment. That was a clinical trial that has put my CLL in remission for 18 months! (It was my ENT who figured this all out. I'm so grateful to her.)
No scans to date but I think that the fact that I have very swollen nodes directly under the affected ear is, I think, more than just a coincidence. So, given what all you good, well informed & experienced CLL folk I’m ready to start the Acalabrutinib and I think my CLL specialist will agree. The deafness, dizziness, tinnitus & fatigue is very debilitating.
As mouseandchair said the start is a CT scan. My haematologist initially got it wrong and sent me for an MRI, but then ENT said that was a waste of time and sent me for a CT scan.
The general consensus seems to indicate IVIG will help, but you have to jump through hoops at the moment to receive it. Just point out all the infections you have had, and keep a record of antibiotics and length of time you have been on them. Do you know if your IG levels have been included in your next bloods because that would save time.
Hello, Sinus problems plagued me for over 12 years and progressively worsened. It took 5 requests for a biopsy which was finally done at Johns Hopkins and revealed that the cells invaded my sinuses. Once I stared Imbruvica, my sinuses cleared and have not had the condition since. The doctors at JHU said they had never seen this infiltration. I was first diagnosed with CLL 26 years ago. Hope this helps.
Sinuses have never been great, just one of those irksome things that occurred now and again. However this current problem is unique in its severity & duration. From the posts here, I am now convinced that treatment for CLL must begin.
Here’s 🙏 that will be me when I start Acalabrutinib.
Hi Petroc, I am now under tx and had some similar symptoms before I began tx. While I never experienced lymphs that were protruding anywhere, my left ear canal became swollen and it felt that I had water in my ear. The NP that sees me at the oncology center said she could not get the ear scope in my ear to look in. My face was swollen, I had some cll bumps in the back of my ears and I had intense sciatic pain which made walking very painful. Once I started tx all the symptoms improved and I began to feel better. The consulting oncologist at MDA recommended the O and V treatment which my hematologist thought was the right course for me.
I wish you the best and hope you feel better soon. Gerry
Thanks Gerry, due entirely to you and all the kind people that have responded, I am now in no doubt that the only way of finally addressing the problem is not via the ENT route but commencing treatment for CLL. I am IgHV unmutated so it was never a question of if symptoms commenced but when. It was (for me) a highly unusual urinary tract infection that led to my diagnosis two years ago & since then it has been one chronic infection after another. This latest has been the worst and most persistent. It is entirely resistant to any antibiotic and the consensus of those that have experienced the same on here is that deep lymph nodes are compressing the ear canal. I’m due to have a consultation with the CLL specialist in mid-Dec and I’m pencilled-in to commence with Acalabrutinib. Given my deafness, the dizziness, sense of fatigue & uselessness that day can’t come too soon.
Thanks for the help & advice & good health to you.
Such helpful suggestions you have gotten. Maybe this has been mentioned already also(didn't see it) but I just want to ask if you keep your living area pretty humid? I have sinus issues particularly when low humidity. Nothing like what you are describing though. Still, couldn't hurt, I wouldn't think. And when they are bad (on my scale of badness), I put boiled salt water up my nose (head back and after it has cooled some, of course)
I’m already under instruction from the GP regarding keeping my airways ‘lubricated’ - steam, sprays, etc. I’m complying religiously (heaven knows it may even be worse if I wasn’t) but notwithstanding that and three different antibiotics nothing seems to be improving matters, if anything, my chest is now becoming involved.
Thanks to all here and their experiences, I’m now in no doubt that the only permanent solution is to commence with the BTK inhibitor.
I had a sinus infection similar to yours. I'd guess my hearing was around 20% at best (I had my TV volume at 100% and still needed closed captioning). If I bent over to pick something up, the pain from sinuses was quite bad.
A doctor prescribed an antibiotic (amoxicillin) that helped while I was taking it, but the problems returned after the course was completed. After that my primary care doctor recommended that I start a daily sinus irritation (NeilMed Sinus Rinse). That has worked wonders. I'm not sure if you have NeilMed where you live, but it might be worth a try.
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