Chronic sinusitis following FCR?

My husband was diagnosed with CLL 6 years ago, Trisomy 12, a middle of the road but not common form. A year later he had FCR with great results but the remission lasted only 3 1/2 years. For the last year and a half he has had chronic sinusitis and for the last several months it has been serious. He is scheduled to start Ibrutinib as soon as this has cleared up. Has anyone suffered with this as well and how did you,get rid of it.

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  • My mother suffered terribly from Sinusitis after FR. It went away using antibiotics but took a very long time (about 2 years). She blamed it on the Imbruvica. Which treatment caused the persistent problem was never identified. She is now taking Idelalisib.

    Because of this I worked on collecting ideas from this site and from ACOR. I have two interesting ideas and will paste them below. I don't have personal experience so I can't say these below idea's work. These are a copy of emails.

    "I was having recurrent sinus infections.

    Antibiotics wouldn't clear it but steroids always did.

    I saw my hematologist, immunologist and ENT.

    I was just on Flonase and Ibratropium bromide nasal sprays.

    I'm now on a new drug called Dymista. It's Flonase and an antihistamine combined.

    I have been on it for 6 months and am feeling great.

    No more sinus infections, Neddy pots, prednisone, antibiotics.

    Just one spray each nostril once daily. It's been wonderful for me.

    "

    ANOTHER IDEA WAS SUGGESTED BELOW:

    1st use a nasal decongestant…. Afrin or other brand like Vicks

    ½ hour later do nasal irrigation (moisture inhalation) …..Steam from shower, moisture from neti pot

    •Use a neti pot to fully flush and irrigate the sinuses from one nostril, up through the head and out the other nostril (see video below).

    •Use a nebulizer or a vaporizer to breathe in the antiviral/antibacterial sinus remedy throughout the night – may be difficult if you are congested and can't breathe the vapor in through your nose, but should gradually clear as you persevere.

    •Use a squeeze bottle to squeeze the sinus wash up each nostril (nasal spray).

    ½ hour later continue to clear the nasal passage of mucus.

    ½ hour later after cleared out use the steroid nasal spray.

    Most corticosteroid sprays suggest the following steps:

    •Wash your hands well.

    •Gently blow your nose to clear the passageway.

    •Shake the container several times.

    •Keep your head upright. DO NOT tilt your head back.

    •Breathe out.

    •Block 1 nostril with your finger.

    •Insert the nasal applicator into the other nostril.

    •Aim the spray toward the outer wall of the nostril.

    •Inhale slowly through the nose and press the spray applicator.

    •Breathe out and repeat to apply the prescribed number of sprays.

    •Repeat these steps for the other nostril.

    Avoid sneezing or blowing your nose right after spraying.

    After steroid nasal spray can use antibiotics.

  • Prior to FCR I had a lot of sinus infections and periods when they were just bunged up. When I get a bad infection I have needed antibiotics, but also do Menthol Chrystal inhalation. It certainly helped with the pain side of it. My grandad swore by it and I think it helps.

  • I'm also Tri 12 and on Ibrutinib for 20 months. I'm really fed up with the constant sinus running into my throat and causing very painful soreness. It also runs down into my chest and makes me cough, so I can't breath well. All in all miserable. The only thing that works for me is yet another course of antibiotics but as soon as they're finished the darn sinus problem comes back. To be fair to Ibrutinib I did suffer from this same problem in the past even before KIDs had been invented.

  • I am pleased to hear from someone else with Trisomy 12. Is Ibrutinib your first line of treatment or did you have FCR before? How did your blood work respond to the treatment and in what time frame? Have you any side effects? what time of day do you take it? Do your blood results indicate you are in remission?

  • Hi I had two previous chemo treatments 6 months of FC then 4 1/2 yrs later FCR for 6 months but only got 6 months remission so I refused more chemo and was put on Ibrutinib 20 months ago. It has been a very effective drug for me with few side effects - cracked finger tips. It gave me loads more energy and my rapidly escalating Leukaemia cells have reduced to negligible. Now though I fear I am some what back peddling and I'm getting urine, sinus and chest infections that I'm warding off with antibiotics but feel my body is beginning to find a way round the Ibrutinib 'wonder' drug. By the time this fully happens I have my fingers Xed for Venetoclax to take over where the Ibrutinib leaves off.

  • I had constant sinus infections and UTIs before diagnosis. Any spray or nose drop made things worse - had several "this one is different" discussions with doctors about this. The only thing that helped sinus infections was a combination of a "pred. pack" - prednisone starting with a high dose on the first day and less each day for a week - and an antibiotic, but eventually even this stopped working. My sinuses just blocked. Sinus surgery to open them so they could drain made a big difference. Shortly after the surgery I started with a hematologist who tested my IgG - @250 which is very low. IVIG infusions were added and my life changed for the better. I have not had a major infection for 14 years!

  • I had an initial dose of frc as a first treatment. Only lasted about 12 months followed by two series of retuxin alone treatments then on to ibrutinib. Also may have trsomy 12. I am on a reduced dose of this later medication. I have a chronic runny nose but have been able to avoid serious sinus infections since retiring and lessening my exposure to crowds. Rest, take vitamins and try to do exercise you can tolerate. If I exercise too hard makes things worse. I take musinex and other drying agents during day and benadryl at night as needed

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