So, today I saw a respiratory doctor at the request of my CLL team. Due to my terrible snoring (sorry wifey!) and what he states are very enlarged tonsils the doctor thinks I may have OSA (says they almost meet). He’s referred me also for a possible tonsillectomy.
So this could fall into the “don’t assume everything you are feeling is related to your CLL” category or it could be that my enlarged tonsils are due to CLL so it is all related. Either way if treating this helps me to sleep better perhaps I won’t be quite so tired during the day. One can only hope!
This may also explain my constant sore throat and recent difficulty in swallowing.
Anybody else out there had a similar thing?
I did scare myself by reading something about a case of rapidly enlarging tonsils even causing more acute airway obstruction....but as this has been coming on for the past few months hopefully I’m not about to lose my airway!
Thoughts on the idea of a tonsillectomy?
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AdrianUK
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How close are you to treatment for your CLL? You may well find that treatment will shrink your tonsils if you can hold off until then. Be interesting to find what a biopsy of your tonsils determines...
I started snoring as my CLL progressed - I hardly snored at all before. When I started taking Ibrutinib, my visible nodes went down in around a week and my snoring stopped.
I also had a few bouts of very bad tonsillitis in the year before I started treatment. I've had some mild tonsillitis since then but this seems to have faded away also.
Not all that scientific, I'm afraid, but that's my experience.
I was diagnosed with apnea and hypopnea several years before my CLL diagnosis. Back then, my trouble was depression and fatigue. I don't have enlarged tonsils at the moment.
I cannot say that the CPAP or BIPAP have made a noticeable difference in either depression or fatigue, but I no longer wake up with a sore throat, and my sinuses are less affected by floating pollen at night because my respiratory therapist added a filter to the hose. I have the sense that I have generally less throat infections than before.
I do get a better night's sleep. though, but I'm still tired, and need a nap after lunch. I can't imagine how tired I'd be without the BiPAP. The CPAP could maybe make me more tired breathing against the constant pressure. I think almost everybody in the U.S. now gets a BiPAP.
One annoying thing is the poor quality and engineering of full face masks. The best masks for me have been the ResMed Quattro series, but they[re fairly fragile - made with a plastic similar to what cassette tape and CD cases are made from. I've learned to grasp it carefully when putting it on and taking it off. I've also used up a roll of duct tape over the years making quick repairs. Most masks also blow air onto my wife. I've rigged up air diversion methods to prevent it. My favorite thing to construct them from is old credit cards sliced into 3 sections and taped in place.
The medical equipment company vendors want to sell you replacement masks and tubes at regular intervals. I've taken my old CPAP completely apart, and it's an appallingly simple device for the price. I think we are being taken advantage of by inflated costs. and this drives up the cost of insurance in the U.S. I would estimate that that the parts would cost maybe $100-$200. So the rest is supposedly the cost of government mandated testing and certification. The arithmetic just doesn't work out, though. I'd be curious to know the cost of CPAP and BIPAP machines in other countries. In the U.S., BiPAPs cost upwards of $1000.
In the U.S., one needs a prescription to buy CPAP or BiPAP machines and even supplies like masks. I buy mask replacement parts on eBay and Amazon. One can make a complete mask from parts - in fact that seems to be a strategy on eBay. They buy a masks at some discount, and then re-bag and sell the parts. Some U.S. insurance will cover the cost of replacement masks and hoses at some regular interval, and medical equipment dealers will often remind you. I find such dealers to be vampires. But I confess that I have indeed visited them on occasion.
Another thing you may find is that the mask changes your sleep position because you can't turn your face into the pillow. I use a fiberfill neck pillow commonly sold in drug and departments stores for use in cars, planes, and trains. It's much cheaper than the costly CPAP pillows that dealers sell. But everyone is different, and some experimentation is needed, I think.
Update: my tonsils grew quite quickly and in fact by 12th they started to rub against each other and cause me to choke not just struggle to swallow. The triage nurse said they were the biggest she had ever seen. I was admitted and steroids, antibiotics and the amazing drug Difflam definitely took the pain away. But over 24 hours later the tonsils are still kissing so we are looking at an urgent tonsillectomy tomorrow or the next day whilst still an inpatient. Some doubts about whether this is CLL in the tonsils or not but we will find out when they look at them in the labs. Even if they are cll I apparently might not need treatment. One woman had hers out after they enlarged shortly after diagnosis but told me she hasn’t needed treatment for twenty years after this!
Update two: sorry forgot to mention the histology showed CLL infiltration. But as the rest of my nodes aren’t growing, I have no B symptoms and my white count is not too bad, it’s back to watch and wait for me
Hi Adrian..I am set to have my tonsils taken out within the next few weeks. They started growing a year ago..and I found out I had CLL in Oct 2017. differing views from doctors has kept me from doing anything so far except for 4 rounds of prednosone and antibiotics, where it would help wonderfully for the time on it and a week later, but always return to the same old huge tonsils. I expect my biopsy will look similar to yours. I have been told since a young child that we-my dad and grnadma had cll-kids of theirs should never have the tonsils out cause they keep the infection from getting worse/and leukemia wasn't a major problem for either of them. dad lived to 79 -diagnosed at 50 yrs old..never had a treatment. Although his tonsils had rotted out of his throat. So have you had a a change in numbers or symptoms since they came out?
Hi there. I was choking on my own saliva and unable to sleep a wink when mine were removed. So it was pretty severe and dramatic. Now I can sleep. Now I can breath. But, it hasn’t had as much of an improvement in my fatigue levels as I hoped it would, but I guess that’s not just caused by obstruction. So in other words don’t expect a miracle cure but expect improvement in sleep and I would have assumed that it might lead to fewer throat infections.
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