Hi all...hope everybody is doing well. I have had sinusitis and bronchitis and cough since Oct 1st 2017...no fever, night sweats or weight loss. I just finished 3 ivig infusions and have 3 more schedule due to my IGg being low. The cough is mostly tight and congested and other times I can move it but it takes several minutes of really hard coughing that has my chest and abdomen hurting. I'm going to see an event next week to see why I produce so much mucous. I have cut out dairy to see if it helps but it hasn't. Still on W&W since Sept '07 despite being unmutated, Trisomy 12 CD38 positive and ZAP-70 positive. I also don't have 11q or 17p deletion. Things I have read are suggestive of a poorer prognosis and early treatment. My hematologist in Tampa says in answer to my question about mutational markers and should I worry was "Not really...intermediate risk...will continue to watch." All of this plus my respiratory issues freaks me out! Any thoughts/comments?
Best regards
Dianne
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Ladydi49
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Given you've had this cough for so long, you really need to push to find what's behind it. That typically means taking a sputum sample and culturing it to find out whether you have a viral, bacterial or fungal infection and if the latter, being prescribed the appropriate antibiotic.
Your hematologist's approach is quite understandable, given prognostic markers are only indicative of what may happen - it's only by monitoring for the occurrence of treatment triggers that we really find out.
I agree with AussieNeil. I have the exact same thing going on. I am going to primary this coming week and handing her a soutm sample. I have had three rounds of antibiotics (the ones I am allowed with Imbruvica) in four weeks. They dent some of the respiratory issues (constant cough, occasional mucus, "Darth Vader"-like wheezing and breathing) but do not solve it for me. Most nights I sleep upright in a chair to avoid drowning in liquid. So, this will be my next step. This time I want to find out if is a plural effusion, water ON the lungs, or whatever. Mnay studies show that these underlying conditions cannot be discerned by CatScan or Xray or blood work. So, sputum sample, here we go. I will not go to the hospital for any treatment until they pin point why I should go. Please keep me posted; I will do the same.
I must admit Dianne, I did think you wouldn’t be too welcome at any ‘event’ if you were going there to produce mucous! (The quirks of predictive text!).
If you were dx in ‘07, you’re holding on well and I wouldn’t be getting too freaked out about markers (which certainly aren’t the worst ones).
I’m wondering why an ENT as it’s the bronchitis and hard, painful cough I’d be more concerned about. I wondered if a respiratory specialist might have been more help unless of course your doctor suspects the sinusitis is driving the cough.
It must be very unpleasant for you and I hope the ENT can come up with some answers. Hope the infusions make a big difference too.
My chest x rays are suggestive of bronchiectasis and a pulmo doctor said several years ago that I have an old scarred area in one area of my lungs suggestive of mycobacterium avium complex which anybody can get unknowingly as it can be in water, soil etc. He said he wasn't going to treat it because I was asymptomatic. If the EENT can't come up with anything then I'll go back to the pulmo...so, all these issues, cll and an abusive relationship is taking it's toll on me
I had same type of cough and sinus condition. Only thing that seemed to help were steroids. Antibiotics weren't of much use. First I had a week of 40mg if I remember correctly, then a month of 10 a day and now I'm on 5 a day for 2 months now and indefinitely. Still get some mucus in the morning and feel a little congested in the evenings, but all in all much better. I also get IVIG every other month
You sound like me. I was able to get off the steroids finally by using a prescription nasal spray called “Dymista”. Eventually I was able to stop that too.
My fear would be...and I say this as a retired nurse...that steroids like prednisone can bring on a bout of shingles and other things as steroids can lower immunity...glad to hear you are doing better...by the way, I got shingles a year after I was diagnosed and all my labs were good. Sadly I can't get the shingles shot per my hematologist as it's a live vaccine and I could break out with shingles all over my body. There is a new vaccine called Shingrex but my hematologist says no it's too new...even though it's not a live virus. I will have to about prednisone at my next visit
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