CLL Support Association
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Started taking Imbruvica March 2018

Hi, I started taking Imbruvica and was wondering if it will help with a stuffy runny nose that I have had for 4 months. I am very tired of blowing my nose and if I lay down the mucous will go into my voice box and I cough it up. Sometimes it is difficult to talk. I was diagnosed with CLL in 2014. Does anyone have this problem and does anyone know if the Imbruvica will help ?

Peace,

RobertClearwaterFL

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My sinuses drain 24/7 and have since RCHOP in 2012... While I was on ibrutinib for only a short 3 month period I saw no change, similarly on Zydelig (idelalisib), for 14 months...no change...

My doctor feels it has to do with a SUBSTANTIAL reduction in mucosal IgA, that occurs with some CLL treatments...

You should however be tested for fungus in your sinuses, its more common in CLL and can cause this situation...

More on IgA

en.m.wikipedia.org/wiki/Imm...

~chris

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Thanks Chris for the reply. We get a large community of Canadian snowbirds in this area. Canadians are Cool ! Yeah my docs have all passed the buck to my primary care doc and she has put me on three different antibiotics (z pack 250mg 5 days, doxy-cycline 100mg 2x daily for 10 days, and augmentin 875mg 2x daily for 10 days) . There was an improvement when I would first start taking the treatment and then it would come back - very frustrating. Now she thinks I just have developed allergy - pollen is bad in FL this time of year . She has me taking flonase and lortadine tablets - I have not seen any improvement. I was hoping the Imbruvica would be the answer . Peace

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FUNGUS...get a swab and have it tested... GP don't consider it often, because it is rare outside of immunocompromised patients and HIV/AIDs.

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I have a dry nose.

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Thanks again - I will be calling her Monday and request it.

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robert, you might get a better work up from an ENT. Just a suggestion.

And, if you do go to an ENT or any other Dr. be sure to let them know of your CLL, treatment and stress the immunocompromised part.

Check also, any meds you are given to see if they are compatible with Imbruvica.

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Thanks CLL lady - my docs told me there are no compatibility issues - but my stuffy nose and cough started before Imbruvica was given to me. I was hoping Imbruvica would help.

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I second that! I went to an eent who after reviewing my sinus CT scan promptly wanted to do balloon dilation but when I checked him out on ratemds.com there were only 3 reviews 2 of which were unfavorable

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I have been on Imbruvica since august last year. Still have sinus infections. Imbruvica has not helped me in this area. Sorry I couldn't give you better news.

Bill1288

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Thanks Bill, what caused your sinus infections ? what is the treatment that helped ?

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Robert: I really do not know what caused sinus infections, except my immune system is compromised. Started after my chemotherapy treatment and went out of remission. I did have sinuplasty done, but it did not help. Have been treated with antibiotics each time. It improves after antibiotics for a short time then starts over again. Currently I am rinsing sinuses in morning with neilmed sinus solution then spray 1 spray of flonase at least a half hour after rinse. I do this at night also. It does help. I am currently on antibiotics now for 10 days. I have told my Dr.'s I may need a longer dose of antibiotics since I have CLL, but still only give me 10 day treatment. May have to do IVIG in the future? It is just aggravating to say the least. But the rinses make it tolerable.

Bill1288

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Ever try Neti Pot?

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Thanks GMa27. I have. I like the NeilMed bottle a little bit better.

Bill1288

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I looked it up. Just looks like other nasal sprays? When it runs out, you need to buy more. Neti pot uses tap water and if you want can buy the "salt" packets that last 6 months or more. But can use without...more of an irrigation system than a "spray". What is difference from other "spray" bottles that you like about the Neil Med?

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Please don't use a Neti pot if you are a CLL patient.... only STERILE nasal flushes, that are in a closed system... should be considered

There are many brands Arm and Hammer make some as does, NeilMed... my preference is HydraSense...

Also, dip the applicatior in isopropyl alcohol before using and when switching nostrals... shake it off and give it time to evaporate...

hydrasense.ca/en/nasal-care...

You don't want to start a mushroom farm (fungi) in your sinuses... they are extrordinarily hard to treat...

~chris

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I use the bottle and fill it with distilled water. I heat in microwave for 30 seconds before I use. I use the packets from Neil Med in the bottle. I clean bottle after each use and do use alcohol to clean tip. My ENT told me to be sure to clean after each use and I do.

Bill1288

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I see it's like neti pot but a spray type. Interesting! The first time I used neti I thought I was drowning! But it works so well.

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This is ironic...my hubby having nose surgery on Friday. Just opened his instructions. They want him to buy Neil Med ! That's what I call "coincidence" or gift from "above".

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Wishing him the best Friday.

Bill1288

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I have the same problem and I’m not on any meds yet -went to two ENTs and they stuck cameras down my throat and up the sinuses and all was clear - getting tested for food sensitivities but since Chris is adamant about fungus and IgA issues going to bring that up with the immunologist and get tested also. Since my antibodies are pretty low at this point, (mention of IVIG soon by specialist), this now makes sense - thank you Chris!

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Thanks Stretch, so you get worse when you eat ? Every time I eat I need to excuse myself to go blow my nose 1-2 times. And sometimes I cough and it sounds terrible - if at a restaurant it is embarssing.

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Sounds like your turbinates are very sensitive. Look that up. They are in your nose. ENT might help if they are the tubinates. Anything hot that you eat, soup, coffee...can stimulate from the steam going up nose. Hopefully it's something simple.

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Thanks Gma it may be hot foods make it worse - not sure ?

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Yes - worse when I eat certain foods I’ve not been allergic or sensitive to in the past - seems grapefruit and dairy thus far -always this post nasal drip and constant throat clearing - really annoying. Which is why the immunologist appt -

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Well you probably know already but you should not eat grapefruit or drink grapefruit juice with Imbruvica - not sure why ? I do like my dairy products but have noticed even if I do not have any with a meal it still can make my nose stuffed up.

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Hello fellow sufferers. Mine is also worse when I eat or drink. Lots of ‘gobbing’ up phlegm like an old man. Large box of Kleenex always at hand. I am on monthly IVIG to help with my sinus problems. ENT surgeon discounted surgery as he said I may end up with scar tissue and more infection. I have swollen lymph glands in my neck and tongue and now on Ibrutinib and Haematology say that will sort me out. Hope so.

Good luck

Colette

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Thanks Colette - I hate gobbing up phlegm.

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Hi Robert!

The chronic sinusitis you describe is frequently described by CLL patients, including myself. I have been very fortunate to be able to limit the congestion and discharge from progressing to a sinus infection which is also common with CLL. I use a three step approach each morning and I am having pretty good results. Step one is to use a saline nasal spray such as Arm&Hammer which has a nasal tip. Spray each nostril until you start to feel it in back of throat. Yes, you may gag and spit! Wait about 10 minutes for step 2 which is one spray in each nostril of oxymetazoline spray such as Afrin. Step 3, I only use on bad days and that is one spray in each nostril of fluticasone nasal spray which I wait about 5 minutes after oxymetazoline to use so that this mild steroid can penetrate more once the oxymetazoline has had a chance to work. Most days now, I only use first two steps and some days just step one. Since I adopted this topical approach, I have not had to take any oral antihistamines. Hope this helps!

By the way, there is a CLL support group in the area and one of the things we do is to share information about how we cope with some of the side effects of CLL and treatment. We meet at Moffitt on 3rd Saturday each month from 10:30am to Noon. If you're interested let me know at thoma.henry@moffitt.org

Tom

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Do you know of any support groups in Palm Beach County, FL ?

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Tom thanks for information - I kinda stick to the Clearwater/Dunedin area for now but I will keep that support group in mind. My Primary care doc has decided to take a chest xray and sinus CT scan. Peace

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Hi...I'm thinking of going to that meeting. I know where the Stabile building is but not sure if it's ok to park in Gold Valet garage or not?

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Food and environmental allergies should be ruled out. Self help options include elimination dietary changes. Try omitting one major food and/or beverage group for a week or two to see if sinus problems improve. Dairy allergies are fairly common for example. At age 66, I seem to be more sensitive to pollen and other seasonal changes than ever before although not enough to make me wear a mask 😷

Best wishes

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I just hope its not all the water I drink ! Thanks

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Do you filter it?

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Hi Woodfin - no I drink bottled water mostly, once in awhile tap water especially when I take pills.

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Sounds good

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Hi, Robert. Hope your treatment goes very well! Love and prayers from Ohio.

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Thank you very kind of you, and back at ya.

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My husband’s nurses encouraged him to try Claritin D. Their patients said it reduces bone pain. It also helps with sinuses. He’s on Ibrutinib.

Blessings

Farrpottery

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Thx for the tip

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Hi RobertClearwaterFL...I'm up in Hernando County and have been struggling with sinusitis and bronchitis since last October and nothing seems to help. Yes you are right about the pollen here...it's never ending! My hematologist at Moffitt said to not use Flonase as it can cause a fungal infection. I am so sick of being sick with this. I was at Moffitt yesterday for my 6th ivig and I'm not sure if it's helping. A week ago I had a significant fever and chills. The nurse at Moffitt told me to have them check me for the flu even though I got the flu shot and the pneumonia shot. The flu swab was negative so they said it was bronchitis and put me on Bactrim DS and Tamiflu as a precaution. I have my doubts if it will help. I also see a pulmonologist in Tampa which hasn't helped much either. I take 10 mg of zrytec every day and try not to eat before going to bed but still have a cough. Also sleep (when I'm not up coughing) with 3 pillows and I think a bit of reflux occurs which hits the voice box which in turn ramps up mucous in that area...

Best regards,

Dianne

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Hi Dianne, I forget where I read this tip ? But when you go out try rubbing a small amount of Vaseline around your nostrils ! It’s supposed to trap the pollen. Worth a try. Sorry you are having such a rough time. My mucous seems to be diminishing since I have been on Ibrutinib !

Best wishes

Colette

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Hi Colette - I am glad you are feeling better with the ibrtinib .

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Thank you Robert,

I was expecting lots of side effects, but luckily so far only a dry mouth and headache the first couple of nights.

Wishing you well and hopefully you will get the correct treatment soon.

Regards

Colette

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Thanks mrsjsmith I have done the vase line trick but since I have lung issues I don't use it anymore but, I have applied some antibiotic ointment i.e. Back tracing around and just in my nostrils. I also do it if I have to fly anywhere and, when I do fly I wear a mask and have tons of Lysol wipes handy...

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Hello Dianne,

For travelling I use de Mamiel Altitude Oil. Few drops on a Kleenex and sniff. Lots of essential oils like Lavender and Eucalyptus. Works a treat on London bus’s that are full of people coughing ! Worth a look at her website. She is an interesting woman who during treatment for breast cancer decided to produce her own range of oils and study Chinese medicine. I am sure you can get in the US.

Regards

Colette

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We have a company over here called do Terrace that sells oils. My sister went to one of their parties and bought a diffuser and some oils ie Breathe, Eucalyptus, and a few others and she's been quite healthy since then. I'm thinking. ...auto correct : doTerra not do Terrace of buying some including Frankincense. I'm hoping it will help with my sinus issues as well as promote a calming effect and will listen to my relaxation cd: Steven Halpern called Deep Theta for Brain Entrainment. You can find all of this online.

Best Regards,

Dianne

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Hi Dianne,

I had a quick look at the company you mentioned online and it looks like ‘ pyramid selling ‘ ? I would just be careful and find an organic brand. The relaxation cd sounds a good idea. I find reading in bed sends me to straight to sleep.

Best wishes

Colette

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Thanks...do you know of any companies that sell organic oils? I think the diffuser which I saw on Amazon would be okay.

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Hi,

I have used Tisserand, and had a quick look at UK website and there is a link to US distributor.

Staying positive is half the battle ! I have my off days but then bounce back.

Colette

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Auto correct: bacitracin ointment

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Hi Diane - my voice has been awful since this started, I cough up some nasty mucous. When I lay down it is worse and I have coughing fits and must sit up which messes with by going to sleep pattern - a nightmare. Until I get my chest xray and sinus CT scan they are treating it like an allergy. I take fluticasone propionate in the day and 10 mg loratadine at night until I get the results. So far this has not worked.

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Hi Robert....I had a CT scan of my sinuses and it showed 4-5 ml mucousal thickening of maxillary sinuses on the right and 1-2 on the left. I take 10 mg of zyrtec every morning. It has cut down on the amount of mucous running down my throat and the up half the night coughing and gaging in the bathroom sink. I have had 6 ivig's which seem to have helped a little....not entirely over this 7 month sinusitis and bronchitis. My Hematologist at Moffitt said no to Flonase because it could cause a fungal infection and, it contains a steroid which can lower immunity and cause an outbreak of shingles.

Best Regards,

Dianne

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Hi Ladydi - I will be getting my chest xray and sinus CT scan next week. I was living in the Hg range of 5.0 to 8.5 since August of 2017. With the Imbruvica I have improved to 10.5 to 11.1 for the last 3 weeks, and I am feeling better but still have this stuffy nose and cough issue. I am hoping by body will start to fight off whatever it is ? Peace

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Good luck with the scans...keep us posted and good news re your labs. I'm still on W&W but am thinking my next appointment with my hematologist will include a discussion re meds

Best Regards,

Dianne

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Is Imbruvica the same as Idelalisib (spelling?) Or, Ibrutinib the latter of which can cause A-Fib

Thanks,

Dianne

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Hi Ladydi - Ibrutnib and Imbruvica I believe are the same. Not sure what idelalisib is ? Peace

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Hi Ladydi & Robert,

The first two Kinase inhibitors were Ibrutinib / Imbruvica a BTK inhibitor approved by the US FDA in late 2013, and Idelalisib/Zydelig a Pi3k inhibitor approved in early 2014.

Here is a brief paper by Dr. Mato now at MSKCC in New York talking about the sequencing of those non chemo treatments: ncbi.nlm.nih.gov/pubmed/284...

onclive.com/web-exclusives/...

Len

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Thanks Len - I have no medical background but I will try to understand.

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Thanks Len

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Went to an ENT and found out with a culture that my runny/stuffy nose was caused by bacteria called Pseudomonas aeruginosa which needed to be treated with Levofloxacin antibiotic. Seems to have done the trick.

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Good to hear that you finally had the cause of your runny/stuffy nose identified and an effective antibiotic was found. It's worth bearing in mind that Levofloxacin is one of the fluoroquinolines that have an associated risk of spontaneous tendon rupture.

snopes.com/fact-check/fluor...

ncbi.nlm.nih.gov/pmc/articl...

If you are prescribed an antibiotic from the fluoroquinoline family, ask if a different antibiotic is possible. Our member sparkler has been actively involved in trying to improve patient safety from overzealous use of these antibiotics.

Neil

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