Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 Hi Matt, this is what I had. After being on Sprycel for almost 1 1/2 years, I had shortness of breath. It did not occur to me to call Dr. Talpaz, as the drs. in emergency said it was pneumonia. So that's what I was treated for. I told them several times, SOB was a side effect of the drug Sprycel. They said it was pneumonia. So, 2 months later, when the SOB got so bad, they had to do a thoracentesis, removed 1 1/.2 liters of fluid. When I finally told Dr. Talpaz he took me off the drug and the problem cleared up. Now I tell Dr. Talpaz every little things that happens! good luck, Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: Lottie Duthu <lotajam@...> Subject: [ ] Pneumonitis " CML " < > Date: Saturday, January 8, 2011, 11:02 PM  Dear Matt, So sorry to hear about your problem. I looked up pneumonitis from Mayo clinic to see if it was the same thing I had while on Sprycel. They called it pneumonia at the time, but who knows, since I was on Sprycel, it could have been pneumonitis. Of course I had other symptoms, like shortness of breath and ran a temperature. I called an ambulance because I could not exhale and that was scary. If you have only pulmonary effusions, it would not necessarily mean you had pneumonia, but inflammation of the lining of the lungs and I believe that can cause coughing. The same thing can occur with the heart. Have you looked at your monograth that comes with the prescription? It may be listed as a side effect. By Mayo Clinic staff Pneumonitis (noo-moe-NIE-tis) is a general term that refers to inflammation of lung tissue. Although pneumonia is technically a type of pneumonitis because the infection causes inflammation, most doctors are referring to other causes of lung inflammation when they use the term " pneumonitis. " Factors that can cause pneumonitis include: a.. Occupational exposure to airborne particles, such as asbestos or silica. b.. Some drugs, particularly CHEMOTHERAPY drugs, or c.. Radiation therapy to the chest. My antenna immediately went up when I read your post because I get pneumonia shots regularly and never had it before, but on Sprycel I did. That is the reason they took me off it and put me in another trial. Perhaps some other patients experienced the same. I think Bobby Doyle may have, also. I think she was in that trial longer than I was. If you will note that one of the factors is attributed to chemotherapy drugs. Only a sputum test will rule anything out. My son was exposed to everything but chemotherapy, but he had several infections, including aspergillius, for which there is no cure for him, it's just a fungus he picked up from breathing spores on the job as a welder. I'm sure you will do what is right for you after careful evaulation by your doctors. Good luck in getting answers. Carpe Diem, Lottie Duthu Not everyone gets pneumonia from airborne particles and radiation, but some do, so any of those things are a possibility. I hope this brings some coherence to the issue. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 Thank you Lottie, it is so kind of you to take the time to respond. Sincerely, Matt Maynor Sent from my iPhone On Jan 8, 2011, at 11:02 PM, " Lottie Duthu " <lotajam@...> wrote: > Dear Matt, > So sorry to hear about your problem. I looked up pneumonitis from Mayo clinic to > see if it was the same thing I had while on Sprycel. They called it pneumonia at > the time, but who knows, since I was on Sprycel, it could have been pneumonitis. > Of course I had other symptoms, like shortness of breath and ran a temperature. > I called an ambulance because I could not exhale and that was scary. If you have > only pulmonary effusions, it would not necessarily mean you had pneumonia, but inflammation of the lining of the lungs and I believe that can cause coughing. The > same thing can occur with the heart. Have you looked at your monograth that comes with the prescription? It may be listed as a side effect. > > By Mayo Clinic staff > Pneumonitis (noo-moe-NIE-tis) is a general term that refers to inflammation of lung tissue. Although pneumonia is technically a type of pneumonitis because the infection causes inflammation, most doctors are referring to other causes of lung inflammation when they use the term " pneumonitis. " > > Factors that can cause pneumonitis include: > > a.. Occupational exposure to airborne particles, such as asbestos or silica. > b.. Some drugs, particularly CHEMOTHERAPY drugs, or > c.. Radiation therapy to the chest. > My antenna immediately went up when I read your post because I get pneumonia shots regularly and never had it before, but on Sprycel I did. > That is the reason they took me off it and put me in another trial. Perhaps > some other patients experienced the same. I think Bobby Doyle may have, > also. I think she was in that trial longer than I was. If you will note that > one of the factors is attributed to chemotherapy drugs. Only a sputum test > will rule anything out. My son was exposed to everything but chemotherapy, > but he had several infections, including aspergillius, for which there is no cure for him, it's just a fungus he picked up from breathing spores on the job as > a welder. > > I'm sure you will do what is right for you after careful evaulation by your doctors. > Good luck in getting answers. > > Carpe Diem, > Lottie Duthu > > Not everyone gets pneumonia from airborne particles and radiation, but some do, so > any of those things are a possibility. I hope this brings some coherence to the issue. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 Thank makes sense, Bobby. Were you coughing very much? And if so, was it a productive cough? Sincerely, Matt Maynor Sent from my iPhone On Jan 9, 2011, at 8:51 AM, ROBERTA DOYLE <rcd1929@...> wrote: > Hi Matt, this is what I had. After being on Sprycel for almost 1 1/2 years, I had shortness of breath. It did not occur to me to call Dr. Talpaz, as the drs. in emergency said it was pneumonia. So that's what I was treated for. I told them several times, SOB was a side effect of the drug Sprycel. They said it was pneumonia. So, 2 months later, when the SOB got so bad, they had to do a thoracentesis, removed 1 1/.2 liters of fluid. When I finally told Dr. Talpaz he took me off the drug and the problem cleared up. Now I tell Dr. Talpaz every little things that happens! good luck, Bobby > > a ( Bobby ) Doyle, dob 12/17/29 > DX 5/1995 > Interferon 9 weeks/Hydroxyurea 5 years > 02/2000 to 06/2002 Gleevec trial, OHSU > 06/2002 Gleevec/Trisenox Trial, OHSU > 06/2003 Gleevec/Zarnestra Trial, OHSU > 04/2004 Sprycel Trial, MDACC, CCR in 10 months > 04/2008 XL228 Trial, U of Mich. > 01/2009 PCR 5.69 > 04/2009 Ariad Trial AP24534 > 09/2009 PCR 0.01 > 11/2009 PCR 0.034 > 02/2010 PCRU > #840 Zavie's Zero Club > > > > From: Lottie Duthu <lotajam@...> > Subject: [ ] Pneumonitis > " CML " < > > Date: Saturday, January 8, 2011, 11:02 PM > > > > Dear Matt, > > So sorry to hear about your problem. I looked up pneumonitis from Mayo clinic to > > see if it was the same thing I had while on Sprycel. They called it pneumonia at > > the time, but who knows, since I was on Sprycel, it could have been pneumonitis. > > Of course I had other symptoms, like shortness of breath and ran a temperature. > > I called an ambulance because I could not exhale and that was scary. If you have > > only pulmonary effusions, it would not necessarily mean you had pneumonia, but inflammation of the lining of the lungs and I believe that can cause coughing. The > > same thing can occur with the heart. Have you looked at your monograth that comes with the prescription? It may be listed as a side effect. > > By Mayo Clinic staff > > Pneumonitis (noo-moe-NIE-tis) is a general term that refers to inflammation of lung tissue. Although pneumonia is technically a type of pneumonitis because the infection causes inflammation, most doctors are referring to other causes of lung inflammation when they use the term " pneumonitis. " > > Factors that can cause pneumonitis include: > > a.. Occupational exposure to airborne particles, such as asbestos or silica. > > b.. Some drugs, particularly CHEMOTHERAPY drugs, or > > c.. Radiation therapy to the chest. > > My antenna immediately went up when I read your post because I get pneumonia shots regularly and never had it before, but on Sprycel I did. > > That is the reason they took me off it and put me in another trial. Perhaps > > some other patients experienced the same. I think Bobby Doyle may have, > > also. I think she was in that trial longer than I was. If you will note that > > one of the factors is attributed to chemotherapy drugs. Only a sputum test > > will rule anything out. My son was exposed to everything but chemotherapy, > > but he had several infections, including aspergillius, for which there is no cure for him, it's just a fungus he picked up from breathing spores on the job as > > a welder. > > I'm sure you will do what is right for you after careful evaulation by your doctors. > > Good luck in getting answers. > > Carpe Diem, > > Lottie Duthu > > Not everyone gets pneumonia from airborne particles and radiation, but some do, so > > any of those things are a possibility. I hope this brings some coherence to the issue. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 I do not recall coughing, but now that I remember, I had a lot of pain in the right side of my chest. I really was an idiot not to call Dr. talpaz on this, I would have been off sprycel sooner and not had to undergo the thorathentesis. (which they said would not hurt and they were full of doo doo !!!!) Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club > > From: Lottie Duthu <lotajam@...> > Subject: [ ] Pneumonitis > " CML " < > > Date: Saturday, January 8, 2011, 11:02 PM > > > > Dear Matt, > > So sorry to hear about your problem. I looked up pneumonitis from Mayo clinic to > > see if it was the same thing I had while on Sprycel. They called it pneumonia at > > the time, but who knows, since I was on Sprycel, it could have been pneumonitis. > > Of course I had other symptoms, like shortness of breath and ran a temperature. > > I called an ambulance because I could not exhale and that was scary. If you have > > only pulmonary effusions, it would not necessarily mean you had pneumonia, but inflammation of the lining of the lungs and I believe that can cause coughing. The > > same thing can occur with the heart. Have you looked at your monograth that comes with the prescription? It may be listed as a side effect. > > By Mayo Clinic staff > > Pneumonitis (noo-moe-NIE-tis) is a general term that refers to inflammation of lung tissue. Although pneumonia is technically a type of pneumonitis because the infection causes inflammation, most doctors are referring to other causes of lung inflammation when they use the term " pneumonitis. " > > Factors that can cause pneumonitis include: > > a.. Occupational exposure to airborne particles, such as asbestos or silica. > > b.. Some drugs, particularly CHEMOTHERAPY drugs, or > > c.. Radiation therapy to the chest. > > My antenna immediately went up when I read your post because I get pneumonia shots regularly and never had it before, but on Sprycel I did. > > That is the reason they took me off it and put me in another trial. Perhaps > > some other patients experienced the same. I think Bobby Doyle may have, > > also. I think she was in that trial longer than I was. If you will note that > > one of the factors is attributed to chemotherapy drugs. Only a sputum test > > will rule anything out. My son was exposed to everything but chemotherapy, > > but he had several infections, including aspergillius, for which there is no cure for him, it's just a fungus he picked up from breathing spores on the job as > > a welder. > > I'm sure you will do what is right for you after careful evaulation by your doctors. > > Good luck in getting answers. > > Carpe Diem, > > Lottie Duthu > > Not everyone gets pneumonia from airborne particles and radiation, but some do, so > > any of those things are a possibility. I hope this brings some coherence to the issue. > > Quote Link to comment Share on other sites More sharing options...
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