I have had a irritated throat with congestion for 5 months. Recently diagnosed with CLL... am 77 years old, so not too worried... I'd had a lot of congestion in throat and ear affected... finally started Claritin and it is helpful, but pricey -- $1 a day. Have a throat node, doc say also nodes in lungs. Little other symptoms... no fatigue, just this darn scratchy throat and plugged eat for five months. Have been using ear drops of peroxide, doesn't help... with low immunity, don't want to start a steroid drop. Anyone else have sore throat or nodes around where tonsils were?
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Butitisme
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Actually, I DiD see an ENT and he told me to "Stop coughing!... that I didn't have a cold. Didn't even look down my throat.. shoved camera up my nose and said a little red... Didn't give me anything, but told me to come back in a month.!!!!! For what? He said I didn't have anything!!!. Will hope to find another practice.
sounds very much what I have been plagued with.. nodes around/under my ears and around my tonsil area are always flaring up with symptoms of a scratchy throat, tickly cough and nasal issues... ive taken antibiotics a few times but it only keeps it away 2 maybe 3 weeks at the most. I've seen the ENT person nothing sinister thankfulky found apart from mutiplying cysts (no answers given for that one); and the GP has their theory of gastric reflux but im not so about that.
So I sympathyse with you as it does tend to irritate when its becoming a constant. I sometime try fresh lemon ginger and honey drinks, along with anticeptic gargles.. it doesnt cure it but in my head Im keeping it at bay. Sorry I have no answers to get rid of it only to alleviate.
Yes, I've tried those same things you have tried, and have used Nexium for Reflux. Nexium helped somewhat but I won't take that long term. The longest I've used it is a month at a time. The one I took had an antibiotic, Amoxicillin, I think, in it.
I've just been diagnosed with CLL, and am in the low range. Am 77, and not too concerned, as I feel I've got some years ahead yet. But am curious about how others handle whatever symptoms they have. I won't be doing any cancer drugs... I don't want my quality of life to changed so much... will just pray I can ride this out for a few years. I'm a Christian, and not afraid to die. Everyone does, and this appears to be what I've been given. Much better than a stroke, heart attack, or languishing in a nursing home. But as I continue this journey, it will be nice to have others who understand the condition to talk with. Blessings to you all! Barb
I'm finding help with generic Claritin - Loratadine... it has calmed my congestion/mucous problem.. and I won't miss the one pill a day 10 mg... as for gastric reflux, I often take baking soda water to calm any acids before I go to bed. I also use Papayas on a regular basis to keep my gastric system in good shape. Do NOT go with acid reducers, except on occasions when you know you've eaten too much... Give the Loratadine a couple of days to take care of the itchiness, cough, and irritated nodules. I hope this is of help to you. It has made me feel like I am almost normal, and not conscious of my having CLL. I go back next week for my 6 month checkup.
B
I'm in my 70s have CLL and am on Imbruvica for a year and a half and I still have an irritated throat and plugged ear, at least 3 times a year I have to go to the Dr. for a shot of Rocephin. Even though it isn't an "infection", my primary doctor gives me the shot and it takes away the irritation and the swelling. Every once in a while I get a shot of DepraMedrol too which is a steroid of some kind that doesn't interfere with the Imbruvica and really takes down the swollen lymph nodes that cause pain. Don't know if this would work for everyone but it does for me. I first was diagnosed with NHL when the lymph node in my neck was very large and my ear was constantly plugged and had fluid......that was 10 yrs. ago. Now the large node is way down to almost nothing but the irritation in the throat still comes back frequently as does the plugged ear. Most doctors want me to have a specialist put a tube in my ear for drainage, but I'm not doing it. Afraid of complications and possible infection. At this point, I'd just rather get the antibiotic shot to get rid of it. It is discouraging and annoying though. Something else to deal with. Hope they can find something to cure yours. If they do, let me know and I might try it!
Hi bluenet: Hope you read my previous reply addressing the issue of ear problems. I have had ear tubes put in 3 times. After several months to a year your body just sort of pushes it out. The procedure only hurts for a second, and it immediately relieves the pressure. The only risk of infection that I know of is if you get water in your ear. So if you have a tube you can't swim or get water from the shower in your ear. I've never had a problem with my tubes. Something to consider. Little kids get them all the time.
Thank you for the option I'd never considered... I'll see as I move along this path... if the ear gets worse (just a pressure and lack of clear hearing) I will look into that.
No, I haven't seen your previous reply. Problem is, I always do get water in my ears when swimming or especially when washing my hair! Will think about it, but not really crazy about the idea. Thanks.
Thanks for your information ... I hope not to have to use any drugs for a while...since I've just been diagnosed.... I've written yours down, though. At this point, I can bear with the annoyance.
Hi Bluenet... just read your post and I also have the plugged ear, and had itchy throat, cough, congestion... please see my response to Loran: I'm finding help with generic Claritin - Loratadine... it has calmed my congestion/mucous problem.. and I won't miss the one pill a day 10 mg... as for gastric reflux, I often take baking soda water to calm any acids before I go to bed. I also use Papayas on a regular basis to keep my gastric system in good shape. Do NOT go with acid reducers, except on occasions when you know you've eaten too much... Give the Loratadine a couple of days to take care of the itchiness, cough, and irritated nodules. I hope this is of help to you. It has made me feel like I am almost normal, and not conscious of my having CLL. I go back next week for my 6 month checkup.
Perhaps the simple Loratadine (I get from Walmart... generic Claritin but 1/10th the price. Hope this is helpful...
Hi Bluenet, may I ask did you get chemotherapy for your NHL diagnosis? I have the same symptoms as you, blocked ear, enlarged lymph nodes in the neck and under chin. When it gets bad I will get a sinus headache as well, I think it's due to inflammation not infection, because there's no mucus drainage. I went to the ENT but he just gave me a corticosteroid nasal spray, it does alleviate my sinus headache and shrinks the lymph nodes some, but I still feel pressure in the ear and the lymph nodes are still enlarged.
No I didn't get treatment. My doctors wanted me to see an oncologist but I wouldn't. Actually I thought I'd be dead in 6 weeks like my mother was when she was diagnosed, but as it turned out, I waited 10 years before seeing an oncologist and only after I was in the hospital with pneumonia. During that time I had sinus infections, blocked right ear with lots of fluid in it, and sore throats with my throat lymph node enlarged quite a bit, looked like mumps.......or fat. The only thing that helped me was a shot of Rocefin(sp) and Depromedrol (an antibiotic and a steroid). Took the swelling down and the antibiotic took care of the inflammation. Probably wasn't the smartest thing to do, and I wonder what they would have treated me with 10 years ago for NHL. I did not want the IV cancer treatment that made everybody I knew even sicker and then they died anyway. That's why I didn't get treatment.
Thanks for the reply bluenet. Yes, sometimes the treatment is worse than the disease. You must have a slow growing form of NHL, It's awesome that you're still relatively in good shape for having cancer for over 10 years! I'm so happy for you! Although now I feel like I need to get these enlarged lymph nodes biopsied and it's probably not good news.
Maybe not, but there are some great treatments out there. My NHL turned into CLL and that's when I started on Imbruvica and have done well on it now for two and a half years, so, yes, I can't complain at all!! Hope you do well in whatever treatment you decide too!
your symptoms sound very familiar cause I've had "all of the above"!! For the throat I initially thought I was coming down with a cold but neither would it develop into one, nor would go away, until my Dr said it could be reflux related so I started taking pepto before I go to bed and it seems to be helping. For the congestion and stuffed up ear, I was given Claritin, Flonase but a decongestant worked best. I'm taking Sudafed which here in California is a controlled substance, but they do sell it over the counter with proper ID.
For the ear which remained "stuffed up" they ended up irrigating it, (some wax came out!) and it really made a difference!
Hope any of the above is helpful to your symptoms.
Thank you for your response... I have gone the Reflux route for a year or so, and have conquered it... I am careful to exercise after the evening meal (to work it down), and if the food might be the type to cause burping, etc., I take a Zantac, or a gas relief pill... the soreness isn't from a gastric source... I have a nodule on the left, and ear above feels like it has a bubble in it. I'm using peroxide drops in ear, and the nodule seems to be getting smaller, but still have a cough.. though infrequent. Two Things I have learned... SWEET & LOW, which we used for years... can cause bowel gas... I wouldn't have believed it, but when I dropped it from our diet, I stopped having the gas! Also, I used Sudafed for a week or so, and didn't connect it at first, but I started leaking with incontinence.... I was wondering why all of a sudden I leaked... not just incontinence, but leaking... I switched to Claritin, and I've not had any more trouble. Claritin is $1 a day, and I hope to move to Zyrtec. Thank you all for writing. I'm just beginning this journey, and any information is good.
Hi "Butitisme" and BTW I love your profile name! Sounds like something I would have thought of. First of all, do you have an ENT doctor? Your combination of symptoms sounds very similar to mine, at least with regards to the ears. For years I have been getting about one sinus infection per year, which will invariably end up in my left ear, with fluid and infection. At times I go totally deaf in that ear. VERY annoying. Also, I have tinnitus, which causes almost constant ringing, whooshing, and pulsating noise in that ear. I don't have the actual sore/scratchy throat, but I do have constant post-nasal drip that causes me to have to do the "ahem" clearing of my throat all the time. Have been on antibiotics quite often, and finally had my ENT doc insert a tube in that ear. That gave me my hearing back immediately, but tests show I am losing the upper and lower registers. Now, to be fair, I also do have Sjogren's Syndrome, an autoimmune disease that affects all the organs of the body. I never know what to blame any symptom on...the CLL or the Sjogren's. I have some enlarged lymph nodes, but Imbruvica has kept them down to where I can barely feel them. My advice is to immediately find a good ENT doc...ask your CLL doc to recommend someone. Also, you can get Claritin in a generic form that isn't as expensive. Also, try a nasal spray called Flonase (generic name fluticasone) which if used regularly is tremendously helpful with ear and sinus congestion. Hydrogen peroxide in the ear doesn't really do much of anything, in my opinion. Good luck!
Hydrogen peroxide is what some doctors use to help clear out ear wax. I think that it is also used for "swimmer's ear". I agree about finding a good ENT. I'm in the process of finding a new one, as mine retired and the new guy I was sent to just didn't impress me. You need someone who is going to properly assess what is going on with you. Self medicating can cause problems. I found that any drop or spray, including Flonase and others in that category made my sinus problems worse. Over the years I have had a lot of "this one is different" discussions with doctors. None of them are for me, and you need a doctor who looks at what does and doesn't help you, not someone who quotes something from medical school or whatever the latest pharm. rep. has told him/her.
Yes I had same thing in April. Went to ENT MD. Lost some hearing too. I am 74, CLL stable on Ibrutinib. I took Dr. Keating's advice - key us to keep sinuses open with Flonase and Dybamist, Claritin D for most of summer. My new hem/onc MD has all his patients on Bactrim SS and also Acyclovir. I am also on IVIG infusion monthly which helps. Please review Dr. Keating's advice - Aussie Neil will give you the web site. Best wishes.
I had a wicked sinus infection that wouldn't go away--my hem/onc started me on monthly IVIG infusions to boost my immunoglobulin G levels (which were below normal) and my sinus infection resolved within a week or two of my first treatment.
I've also had ear stuffiness issues and did my own home irrigation with a bulb syringe (the kind they use to clear babies' noses) and warm water. Lots of earwax came out and I felt so much better after! You have to squirt the warm water in each ear until you get the gunk out--maybe 20 times. I did this on advice of my husband who is an internist who does ear irrigation for his patients in the office on a regular basis.
Last thing regarding CLARITIN--I use the generic form of this called Loratadine--and it is significantly less expensive. Ask the pharmacist for a bottle of 100 tablets--I think I pay around $25.
Thanks for the loratidin info... I have been blessed not to have sinus trouble yet. just the scratchy throat and node problem... that is seeming to get smaller... maybe, after 5 months, my system is fighting it off. Will see. Glad to have found this site, where I can get good advice. So far, I am not on any meds (except Claritin for congestion), and hope to keep it that way until I get some bad symptoms. Cannot use Sudafed, as it caused leaking incontinence. Claritin sort of works... Thanks again all for your help and info. God bless you on your journeys...
Ask your doctor whether Mucinex might help with your congestion. It was by prescription when I first took it, but is now over the counter - thins the mucous. If you can't take sudafed you probably need to avoid any of the sinus / cough products with a D (for decongestant added), like Mucinex D. I find the plain Mucinex is helpful.
Hi Butitisme....I have similar issues, cll, not taking meds, but I do use essential oils for my ears and throat etc. I have been using some lemon oil mixed with a carrier oil on my throat and around the outside of my ears in a gentle massage. I put cotton with a drop of lavender inside my ears and try to think relaxing happy thoughts to let it sink in. Subtle energy I think may be the answer for some of us. Lately I have been suspecting food allergies causing the sore throats. maybe nuts. I had some pine nuts yesterday and it flared up again. I wish you the best of luck in this endeavor to stay healthy as long as possible. I am 73 and have been dealing with this for 6 years now. I have never been able to take any medication ever due to my body's rejecting it. So natural is the logical thing. I listen to positive affirmations and try to keep my own vibration healthy.
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