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CLL Support Association
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Stopped Ibrutinib by the Doctor

Since i last wrote, that i had started developing a body rash and dry mouth and eyes, in end dec 17 my oncologist, did not put me on any preventive medicine. Instead he stopped all the vitamins and anti fungal for some time to see whether that was interacting with Ibrutinib. My condition became worse day by day and very soon i developed a full blown fungal infection in my mouth and obviously in my body as well. A fever started developing, and that is when he made me stop taking Ibrutinib - on the 22 jan 18. Whilst my fever went soon enough, my dry mouth dry eyes and mouth fungal infection is still continuing, and I am miserable. Also i have steadily lost weight day by day, I am on an Itraconazole 200 mg tablet daily. I am not sure why the dry mouth and dry eyes have not gone, despite being off ibrutinib for nearly three weeks, Do you think this has moved to symptoms like Sjogrens syndrome, which is quite devastating to know since it does not have a cure. i will have to cure this fungal infection as top priority.

My questions to any are- have anyone faced the same situation and what has helped ?

When do i go back on Ibrutinib- ? will the dry mouth and eyes go after i start using ibrutinib ?

Any help will be motivating.

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Fungus among us...

I'm in my third month fighting aspergillosis pneumonia, which has now moved into my sinuses and ears... my fear is it may go systemic.

My circumstances are different, but I was on Zydelig (idelalisib) for CLL and a chemo treatment for colon cancer flattened my immune system...

Most of my issues, other than not being able to breath are caused by the antifungal med.. dry mouth, lips like leather, and no saliva...flaking skin, shortness of breath and dizziness...

I meet with my infectious diseases doctor in 15 minutes to get switched off voriconozole and on to something with less side effects.

My Idelalisib is on hold and has been for two months, a situation I can do little about... but is of great concern, because my CLL is on the move again.. The colon cancer... is also unchecked, and metastasizing at will.

I share this in a spirit of comradery.. you are not alone fighting the fungal scourge!

Hang in there... it will improve...

~chris

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hope your team figures best path forward

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Thanks ...at the moment the path is blocked with mushrooms... if they were magic mushroom, might be better resolution... ๐Ÿ„๐Ÿ„๐Ÿ„

~chris

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You are so upbeat considering all you are facing ! I admire you and wish you well . I hope you can get rid of the fungal infection, although it can be difficult. I will reply separately to adme as it was their original post .

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Chris, this sounds horrific... Terrible side effects of anti-fungals yet the aspergillosis spreading into sinuses and ears! I thought it had started to retreat! What did the infectious diseases doc say, when you saw him earlier today?

I don't suppose some IvIG would help boost your immune system, would it?

adme, I was very sorry to hear about your struggles with fungal infections too. I can't answer any of your questions re dry mouth and eyes and Sjogrens syndrome, and can only sympathise with all the misery these funguses are causing...

Paula

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Switching meds... its bound to confuse the fungus... ๐Ÿ˜

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I do hope so, Chris...

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How did your appointment go with the infectious disease doctor, Chris? Will they be able to give you something to stop the aspergillous infection in its tracks? Maybe get rid of it? I so do hope so, and that the side effects will be easier to handle for you. ๐Ÿ™๐Ÿผ

Sandy Beaches

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Chris- You are so very kind to share these comments and try to help others. People like you show there is real good in the world, that God's spirit is with us and helping us all.... Keeping you in my thoughts and prayer... Best, G

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I wish you well and a full recovery. Your situation is tough and I pray that you get a cure from the problems.

My situation is also difficult, but your motivation is like a shot in the arm. Regards

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Please don't give up. Your situation is very complex. I was at the point where I was willing to try almost anything. I experienced a very persistent mouth fungal infection also. In my case it was because I was on antibiotics, and Steroids for a chest infection (with COPD). I also had the dry mouth, and mouth sores, dry eyes, etc, etc. It lasted weeks, until I found that Baking Soda (not Baking Powder) provided not only relief from the soreness, but it helped get rid of the mouth fungus. I was using Clotrimazole lozenges but it didn't seem to be working well enough. My Oncologist didn't detail why Baking Soda worked, but she said it wouldn't hurt me to rinse my mouth (BUT DON'T Swallow it). I rinsed about 4 times daily. Check with your Drs to make sure it's ok for you. Always follow Dr's instructions and make sure ALL the Drs are on board.

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Thanks for your help and motivation. I have not seen any progress for now nearly a month and don't know how to progress. My Oncologist doctor seems to be very clueless on the treatment , and i am visiting the eye doctors and dentists as an alternative. I will try the baking soda with the salt as you have suggested.

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Don't add salt to the baking Soda. It IS a salt. Sorry for the mis-communication.. Don't add anything but the water (per the instructions on the box). Just a small amount of Baking Soda, with a small amount of water. Checking with your Dr is a MUST.

Let me know if it helps you

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Just read Teresa252's reply, and I agree with her totally. Less sugar, extra toothbrushes (mostly soft- even for babies) to scrape off the fungus in the mouth, and anything alcohol will really burn. You can sterilize the brushes with alcohol, and then hot water rinse. Since the toothpaste burns, try dipping the toothbrush into the Baking Soda water, and using that. It's the brush that helps remove the fungus. Later, after the fungus is gone, the dentist may be able to "clean" your teeth better than the toothpaste. You can rinse the back of the tongue by trying to stick out your tongue while you are "gargling" (can be a bit messy with splashes of liquid, but the farther back you can clean, the faster this may go away). As always - I wish you a speedy recovery. Once your blood numbers improve, and your immune system recovers a bit, this shouldn't happen too often.

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Hi Adme, sorry to hear you have this . I got a fungal mouth infection within two weeks of starting FCR . I blamed Septrin antibiotics I was on for prevention of pneumonia but still not sure . It really got a hold and made me very miserable. I did post on here for advice at one stage and received alot of advice , so maybe you can search that post to see comments. I was treated with a variety of anti fungal meds . None cleared it , and one ( called posoconolzone I think) almost killed me - I took such a bad reaction to it and was very ill .

The doctor then prescribed me Ampothericin B lozenges and they did bring relief and kept it at bay .

Iโ€™ve finished the antibiotics now and my mouth is much better , thankfully.

Things I found useful : Get a second toothbrush for your tongue and brush the coating gently several times a day . Sterilize the brush in between uses

I used Kin mouth wash and it helped with taste and to reduce the coating growth .

Drink lots and lots of water .. I found sparkling water better but I love it anyway .

Avoid wine at all costs .. I loved an occasional glass of wine but it drove my mouth infection crazy .

Try to eat less sugar and no mushrooms.

I hope you can get rid of it soon but it can be a very persistent thing .. and I know how much it can affect you and bring you down, so you have my sympathy. Best of luck . Keep saying to your medical team if itโ€™s not improving, as there are lots of drugs to try . I was lucky in that they really did try to help .

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I am drinking a lot of water. However using a soft toothbrush is not working at all for me, and i have to use my fingers for the toothpaste, with a lot of burning . So far i have not been able to get the lozenges at any chemist but will now try online if possible. Thanks for your advise

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The ampothericin B lozenges that I got were prescribed by my consultant, but had to be dispensed through the hospital.. I couldnโ€™t get them in any other chemists . Something to do with licensing. Mention them to your doctor / medical team , they may be able to order them in for you , if they are agreeable. I think it can be given in injection form or intravenously also.

They also gave me solutions to use to help the dryness in my mouth , I canโ€™t remember what they were called but I had to mix two bottles together and then hold it in my mouth for a few minutes . It was like artificial saliva .

Are you using salt water rinses?

I know you are probably trying everything, I know I did!

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my suggestion for your dry mouth is ask your dr to prescribe pilocarpine 5 mg 4x daily or QID it will clear up your dry mouth and should help your dry eyes as well.............It is used on sjourns and radiation patients for the dryness and it does work

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I will ask my oncologist on the Pilocarpine bit. Did it work for you, and how long does one need to take it to see any result. Regards

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you see results within a half hour...I have been on pilocarpine 5mg for past 20 years .......absolutely no side effects

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Ask your doctor about trying the baking soda rinses. You should be able to do them along with prescription meds. Many transplant patients are advised to rinse as many times as they can stand to for mouth sores and thrush - some use warm water with both baking soda and salt. I don't understand the don't swallow it direction that you got, Jaysearch, unless it has to do somehow with spreading the infection. We always used baking soda in water for upset stomachs when I was growing up. One person swore by club soda rinses. I hope you find an answer, adme!

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Perhaps it was my error in not specifying the concentration of Baking Soda to water. My Dr said that swallowing very small quantities is fine, but not to drink a glass. Sorry for another mis-communication.

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Jay - I don't think it was a miscommunication. We used to drink a glass of water with about a teaspoon of baking soda - worked better than Alka Selzer. I would be interested in knowing whether there is new thinking about that, if there is a possibility of the baking soda interacting with one of your other meds., or if it is just your doctor's preference. Regardless, I hope it solves your problem with the fungus. I do brush my teeth with baking soda and a soft brush instead of toothpaste, and have for years. There is a study somewhere about it's effectiveness. My dentist is happy with the results, so no reason to go back to all of the added junk in commercial toothpastes.

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