Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Does anyone have a suggestion for the best treatment of chronic sinusitis that seems to hit those of us with SLL/CLL and who have had FCR? I am on my third round of meds and still coughing with post-nasal drip, etc. Have actually been dealing with this since last March to some degree or other. Any suggestions are appreciated. Bettie Jane; Tallahassee, FL remission since 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Bettie Jane - this may have nothing to do with you, but..... Even before I was diagnosed with CLL I had constant sinus problems, was constantly on antibiotics, etc. Several ENT guys pointed to poor drainage on one side of my face, the sinuses always getting clogged and infected. I had surgery, and think I have not had sinusitis since, notwithstanding the CLL. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 I have the same problem, Bette, since using Fludarabine or FR (never had C). I tried Neti bowls for a time but they gave me a headache. Some people swear by them. If you're not sure what they are, just Google them—they explain it better than I could. I now use Flonase drops prescribed by my GP and I don't have the sometimes scary breathing issues I used to have at night. I do have to be somewhat careful during the winter months to keep my home humidified. I also have a dry cough that the Flonase hasn't made better. Since I sing and now often cough while singing, I will keep on looking for something fix it.-Ellen D.On Jan 2, 2010, at 11:12 AM, bettie grant wrote: Does anyone have a suggestion for the best treatment of chronic sinusitis that seems to hit those of us with SLL/CLL and who have had FCR? I am on my third round of meds and still coughing with post-nasal drip, etc. Have actually been dealing with this since last March to some degree or other. Any suggestions are appreciated. Bettie Jane; Tallahassee, FL remission since 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Thanks, Ellen. Neti pot has been mentioned. I, too, sing, and this cough is killing me. Will be seeing my ENT in a couple of weeks - or earlier if he has a cancellation. If he has anything interesting to offer, I will let you know! Bettie Jane Re: question/sinusitis I have the same problem, Bette, since using Fludarabine or FR (never had C). I tried Neti bowls for a time but they gave me a headache. Some people swear by them. If you're not sure what they are, just Google them—they explain it better than I could. I now use Flonase drops prescribed by my GP and I don't have the sometimes scary breathing issues I used to have at night. I do have to be somewhat careful during the winter months to keep my home humidified. I also have a dry cough that the Flonase hasn't made better. Since I sing and now often cough while singing, I will keep on looking for something fix it. -Ellen D. On Jan 2, 2010, at 11:12 AM, bettie grant wrote: Does anyone have a suggestion for the best treatment of chronic sinusitis that seems to hit those of us with SLL/CLL and who have had FCR? I am on my third round of meds and still coughing with post-nasal drip, etc. Have actually been dealing with this since last March to some degree or other. Any suggestions are appreciated. Bettie Jane; Tallahassee, FL remission since 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Thanks, . I will be seeing my ENT in a couple of weeks or sooner if he has a cancellation. I live in "the allergy capital of the world" and have had mild sinus problems for years, so you may have something. I will let the group know if the ENT has anything valuable to offer. Bettie Jane Re: question/sinusitis Bettie Jane - this may have nothing to do with you, but..... Even before I was diagnosed with CLL I had constant sinus problems, was constantly on antibiotics, etc. Several ENT guys pointed to poor drainage on one side of my face, the sinuses always getting clogged and infected. I had surgery, and think I have not had sinusitis since, notwithstanding the CLL. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Bettie Like , I had sinus surgery. The combination of that an IVIG infusions to boost my immune system has made a tremendous difference. I find that the Neti pot helps if I have an infection and am on antibiotics. If not it seems to create irritation rather than helping. The same is true in my case for all nasal sprays, steroid based or otherwise, with or without antibiotics. I wish you luck in solving your situation. Someone on another list mentioned benzonatate pills as being helpful for coughs. It is an RX and I don't know anything about it, but it might be worth asking about when you see the ENT. Another singer, Pat Re: question/sinusitis Thanks, Ellen. Neti pot has been mentioned. I, too, sing, and this cough is killing me. Will be seeing my ENT in a couple of weeks - or earlier if he has a cancellation. If he has anything interesting to offer, I will let you know! Bettie Jane Re: question/sinusitis I have the same problem, Bette, since using Fludarabine or FR (never had C). I tried Neti bowls for a time but they gave me a headache. Some people swear by them. If you're not sure what they are, just Google themhey explain it better than I could. I now use Flonase drops prescribed by my GP and I don't have the sometimes scary breathing issues I used to have at night. I do have to be somewhat careful during the winter months to keep my home humidified. I also have a dry cough that the Flonase hasn't made better. Since I sing and now often cough while singing, I will keep on looking for something fix it. -Ellen D. On Jan 2, 2010, at 11:12 AM, bettie grant wrote: Does anyone have a suggestion for the best treatment of chronic sinusitis that seems to hit those of us with SLL/CLL and who have had FCR? I am on my third round of meds and still coughing with post-nasal drip, etc. Have actually been dealing with this since last March to some degree or other. Any suggestions are appreciated. Bettie Jane; Tallahassee, FL remission since 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Ellen, Have you tried Biotene spray or one of the "entertainer" throat sprays that are sold through online music stores? I do a fair bit of public speaking and I was often plagued by an embarrassing dry cough until a singer told me about using throat spray. -AmyFrom: Ellen Diamond <e.diamond@...> Sent: Sat, January 2, 2010 6:31:11 PMSubject: Re: question/sinusitis I have the same problem, Bette, since using Fludarabine or FR (never had C). I tried Neti bowls for a time but they gave me a headache. Some people swear by them. If you're not sure what they are, just Google them—they explain it better than I could. I now use Flonase drops prescribed by my GP and I don't have the sometimes scary breathing issues I used to have at night. I do have to be somewhat careful during the winter months to keep my home humidified. I also have a dry cough that the Flonase hasn't made better. Since I sing and now often cough while singing, I will keep on looking for something fix it.-Ellen D.On Jan 2, 2010, at 11:12 AM, bettie grant wrote: Does anyone have a suggestion for the best treatment of chronic sinusitis that seems to hit those of us with SLL/CLL and who have had FCR? I am on my third round of meds and still coughing with post-nasal drip, etc. Have actually been dealing with this since last March to some degree or other. Any suggestions are appreciated. Bettie Jane; Tallahassee, FL remission since 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Do I hear a trio forming somewhere in the middle of the country? Maybe a whole chorus -- there are a lot of singers on this list! Correlations, anyone? In-between variables, as with crime rising with ice cream consumption? (summer of course is the common variable).On Jan 2, 2010, at 9:45 PM, pkennedy16@... wrote: Bettie Like , I had sinus surgery. The combination of that an IVIG infusions to boost my immune system has made a tremendous difference. I find that the Neti pot helps if I have an infection and am on antibiotics. If not it seems to create irritation rather than helping. The same is true in my case for all nasal sprays, steroid based or otherwise, with or without antibiotics. I wish you luck in solving your situation. Someone on another list mentioned benzonatate pills as being helpful for coughs. It is an RX and I don't know anything about it, but it might be worth asking about when you see the ENT. Another singer, Pat Re: question/sinusitis Thanks, Ellen. Neti pot has been mentioned. I, too, sing, and this cough is killing me. Will be seeing my ENT in a couple of weeks - or earlier if he has a cancellation. If he has anything interesting to offer, I will let you know! Bettie Jane Re: question/sinusitis I have the same problem, Bette, since using Fludarabine or FR (never had C). I tried Neti bowls for a time but they gave me a headache. Some people swear by them. If you're not sure what they are, just Google themhey explain it better than I could. I now use Flonase drops prescribed by my GP and I don't have the sometimes scary breathing issues I used to have at night. I do have to be somewhat careful during the winter months to keep my home humidified. I also have a dry cough that the Flonase hasn't made better. Since I sing and now often cough while singing, I will keep on looking for something fix it. -Ellen D. On Jan 2, 2010, at 11:12 AM, bettie grant wrote: Does anyone have a suggestion for the best treatment of chronic sinusitis that seems to hit those of us with SLL/CLL and who have had FCR? I am on my third round of meds and still coughing with post-nasal drip, etc. Have actually been dealing with this since last March to some degree or other. Any suggestions are appreciated. Bettie Jane; Tallahassee, FL remission since 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Is it one of the steroid drugs Pat Kennedy is referring to? The Flonase I take for the sinus congestion has steroids in it so I probably can't take both ... but thanks -- I certainly will keep it in mind.-EllenOn Jan 2, 2010, at 10:05 PM, Amy Bond wrote: Ellen, Have you tried Biotene spray or one of the "entertainer" throat sprays that are sold through online music stores? I do a fair bit of public speaking and I was often plagued by an embarrassing dry cough until a singer told me about using throat spray. -AmyFrom: Ellen Diamond <e.diamondverizon (DOT) net> Sent: Sat, January 2, 2010 6:31:11 PMSubject: Re: question/sinusitis I have the same problem, Bette, since using Fludarabine or FR (never had C). I tried Neti bowls for a time but they gave me a headache. Some people swear by them. If you're not sure what they are, just Google them—they explain it better than I could. I now use Flonase drops prescribed by my GP and I don't have the sometimes scary breathing issues I used to have at night. I do have to be somewhat careful during the winter months to keep my home humidified. I also have a dry cough that the Flonase hasn't made better. Since I sing and now often cough while singing, I will keep on looking for something fix it.-Ellen D.On Jan 2, 2010, at 11:12 AM, bettie grant wrote: Does anyone have a suggestion for the best treatment of chronic sinusitis that seems to hit those of us with SLL/CLL and who have had FCR? I am on my third round of meds and still coughing with post-nasal drip, etc. Have actually been dealing with this since last March to some degree or other. Any suggestions are appreciated. Bettie Jane; Tallahassee, FL remission since 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 For whatever it's worth, I have found Nasarel much more effective than Flonase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 I have found that using a neti jar with warm salt water twice a day helps a lot, You can get the neti jar at your local natural food market.On Sat, Jan 2, 2010 at 11:12 AM, bettie grant <bettiejgrant@...> wrote: Does anyone have a suggestion for the best treatment of chronic sinusitis that seems to hit those of us with SLL/CLL and who have had FCR? I am on my third round of meds and still coughing with post-nasal drip, etc. Have actually been dealing with this since last March to some degree or other. Any suggestions are appreciated. Bettie Jane; Tallahassee, FL remission since 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 Here's a published report on the use of irrigation (neti pot) ... seems worth exploring. Nasal irrigation for chronic sinus symptoms in patients with allergic rhinitis, asthma and nasal polyposis: a hypothesis generating study http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2755042/?tool=pmcentrez All the best Karl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 This is a not so uncommon phenomenon for CLL patients. IV Ig (or gammaglobulin) is often very helpful for CLL patients who have low antibody levels and problems with sinusitis that does not respond to antibiotics. The only thing important to make sure of first is that there is no anatomical reason for the sinuses to not be draining properly. Rick Furman, MD > > Does anyone have a suggestion for the best treatment of chronic sinusitis that seems to hit those of us with SLL/CLL and who have had FCR? I am on my third round of meds and still coughing with post-nasal drip, etc. Have actually been dealing with this since last March to some degree or other. Any suggestions are appreciated. > > Bettie Jane; Tallahassee, FL > remission since 2005 > Quote Link to comment Share on other sites More sharing options...
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