Guest guest Posted July 8, 2010 Report Share Posted July 8, 2010 Hi Dory, my suggestion would be to find another oncologist/hematologist, and get off Gleevec entirely. when i had the very bad rash from Gleevec, then STI571, Dr. Druker took me off the drug. The rash subsided, I was put back on it,at a lower dose but had to quit anyway not long after that as it did not work. He also kept me on a low dose of prednisone. This was before any of the newer drugs were here, but now there are choices and they can make your life more livable. Tasigna seems to be working well for a lot of people, or are you near an Ariad trial? I would certainly look into another doctor. 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: Dory Doggie <hellodoggie0009@...> Subject: [ ] RE: The dangers of Clindamycian HCL Date: Thursday, July 8, 2010, 3:23 PM  Dear CMLer2, I have not posted for quite a while and that was because I went back to work part-time since Jan. 2010. About 4 months ago, I had this lump which appeared in my upper right thigh, although I didn't know it it was the beginning of a rash that Gleevec brings on. I went to my General Oncologist, who gave me a lecture about hygiene, in which it is NOT a hygiene situation. He instructed to use hot compresses to reduce the lump. On a itchy rash, hot compresses make the lump disperse more itchy lumps. I had a PCR/BCR due at Rush University here in Chicago, and I also had a horrific cold. At Rush the Head of CML and Hematology/Oncology, and the Physician Assistant insisted I go on Clindamycian for 10 days taken 3 times a day for a total of 900 mgs. I asked them why was I prescribed this and they said I could have a bacterial infection, although they did not lancet the lump in the leg, to see if it was this before they mandated to use Clindamycian. I informed them that I was very allergic to this antibiotic, and they said it is a very low dosage, and you should try this to rid yourself even the cold. Does this have any sense?? Three days on Clindamycian, and I start having severe rashes first on the lower chin, then across the left eye, nose, and upper cheek on the left, and down the neck. The itchy rash was so severe, that I made a quick emergency appointment to my Primary Physician, who checked the lump on the leg, and gave me more drugs. A generic pill called: HydroxyzineHCL 25mg. Although I had the Gleevec rash in the early infancy almost 7 years ago, I went on Hydroxyzine 15mgs. for only 2 days per week, to prevent any side-effects for over 1 month. At that time I remember it did dry out the rash, however, didn't get rid of them as fast. HydroxyzineHCL 25mgs., makes it impossible to operate a vehicle, and it must have been too high of a dose, because on Sat. morning upon waking up I could not breathe. I asked my daughter who was home that morning, to get me a bottle of water, and to check in her lap-top for the negative side effects of this drug. It stated that hydroxyzine may cause lack of breathing. Great now I can't seem to catch my breathe! Drinking water seemed to help me catch the breathe, and I stop using this again! I called the Rush Physician and told her of the mishap on Clindamycian, and that the lump in my leg is a rash and NOT a bacterial infection nor a boil as everyone in medicine thought it was! The folks at Rush made a appointment with one of their General Surgeons to lancet the lump in the leg. Unfortunate for me he wanted to do major surgery on my leg, upon my questioning the surgery, he wanted to cut out not only the top layer of skin, but he was going to remove muscle and cut into the leg about 10 ML. which is far more muscle and could require more antibiotics if it does not heal quickly. Being on one antibiotic which caused more body rash, I was very reluctant to pursue the conversation. And I told him NO, because not only do I not have any drivers for my kids on music/band/choir at the high schools, but I don't have a spouse who can stop working to help drive the kids. This surgeon who wasn't busy gave me the earliest appointment like 7:15AM. I live in the suburbs and approximately 45 minute from the City of Chicago. When there is construction traffic which is on all major highways one can reach into the city leaving at 5:AM to get into the hospital by 7:AM. I really didn't want to do the surgery until my cough, and cold subsided. Plus one needs another driver when the surgery is being performed. I told the surgeon, not to set the appointment because I didn't want the surgery on my leg. About a week past and that Surgeon place me on a surgery list which the hospital called and gave me a date and time. On Friday of that same day, we experienced a severe thunderstorm and electrical outage, which we left us with 6 days without any electricity. We were experiencing severe hot weather in the Midwest with temperatures soaring in the upper to high 85-90's, hot and humid. We packed a temp. bag and left for a hotel, and make arrangement for our pets which included several fish and our dog. With no electricity, and only candles, we were unable in locating our cell phone electric cords, plus to find a hotel to stay in. It was difficult because most power lines in our suburb was appearing to have busy tones, and due to the problem of no electricity, we were very crippled! The primary gave me a dermatology who prescribed Hydocortisone cream 2.5%, and another cream called TriamcinoloneAcetonide cream USP .1%. The above mentioned goes on leg, truck and the arms for the 1st 2 weeks, then break, then for the next 2 weeks applied again. Well, not lucky with any of the prescribed drugs, the rashes on my hands, arms, and leg are currently blisters from this cream. I haven't even tried the hydrocortisone, because of all the bad side-effects I am running into with the generic brands. Has anyone had these reoccurring rashes from Gleevec 400 mgs.? I called the General Oncology, and asked if I could reduce to Gleevec 300 mgs., or even 350 mgs. and they said no! When I showed up for the CBC, I had asked the nurse who did the CBC if the neutrophils were down, and the nurse said the blood test has nothing to do with allergies, how could this be? Does anybody have any other suggestions for body rashes caused by Gleevec 400 mgs., and hot and humid weather? Thanks, Dory Doggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2010 Report Share Posted July 9, 2010 My wife had a rash as a result of taking Gleevec as well and her doctor took her off of it (Gleevec Holiday) for ten days and put her on a steroid. I think it was Predisone I am not sure of the spelling, anyway her rash cleared up and she resumed her 400 mg of Gleevec and has not had a rash since. Not all patients will react the same, some may have to change from Gleevec. Talk to your doctor about it. Good Luck Bill ________________________________ From: Dory Doggie <hellodoggie0009@...> Sent: Thu, July 8, 2010 2:23:34 PM Subject: [ ] RE: The dangers of Clindamycian HCL Dear CMLer2, I have not posted for quite a while and that was because I went back to work part-time since Jan. 2010. About 4 months ago, I had this lump which appeared in my upper right thigh, although I didn't know it it was the beginning of a rash that Gleevec brings on. I went to my General Oncologist, who gave me a lecture about hygiene, in which it is NOT a hygiene situation. He instructed to use hot compresses to reduce the lump. On a itchy rash, hot compresses make the lump disperse more itchy lumps. I had a PCR/BCR due at Rush University here in Chicago, and I also had a horrific cold. At Rush the Head of CML and Hematology/Oncology, and the Physician Assistant insisted I go on Clindamycian for 10 days taken 3 times a day for a total of 900 mgs. I asked them why was I prescribed this and they said I could have a bacterial infection, although they did not lancet the lump in the leg, to see if it was this before they mandated to use Clindamycian. I informed them that I was very allergic to this antibiotic, and they said it is a very low dosage, and you should try this to rid yourself even the cold. Does this have any sense?? Three days on Clindamycian, and I start having severe rashes first on the lower chin, then across the left eye, nose, and upper cheek on the left, and down the neck. The itchy rash was so severe, that I made a quick emergency appointment to my Primary Physician, who checked the lump on the leg, and gave me more drugs. A generic pill called: HydroxyzineHCL 25mg. Although I had the Gleevec rash in the early infancy almost 7 years ago, I went on Hydroxyzine 15mgs. for only 2 days per week, to prevent any side-effects for over 1 month. At that time I remember it did dry out the rash, however, didn't get rid of them as fast. HydroxyzineHCL 25mgs., makes it impossible to operate a vehicle, and it must have been too high of a dose, because on Sat. morning upon waking up I could not breathe. I asked my daughter who was home that morning, to get me a bottle of water, and to check in her lap-top for the negative side effects of this drug. It stated that hydroxyzine may cause lack of breathing. Great now I can't seem to catch my breathe! Drinking water seemed to help me catch the breathe, and I stop using this again! I called the Rush Physician and told her of the mishap on Clindamycian, and that the lump in my leg is a rash and NOT a bacterial infection nor a boil as everyone in medicine thought it was! The folks at Rush made a appointment with one of their General Surgeons to lancet the lump in the leg. Unfortunate for me he wanted to do major surgery on my leg, upon my questioning the surgery, he wanted to cut out not only the top layer of skin, but he was going to remove muscle and cut into the leg about 10 ML. which is far more muscle and could require more antibiotics if it does not heal quickly. Being on one antibiotic which caused more body rash, I was very reluctant to pursue the conversation. And I told him NO, because not only do I not have any drivers for my kids on music/band/choir at the high schools, but I don't have a spouse who can stop working to help drive the kids. This surgeon who wasn't busy gave me the earliest appointment like 7:15AM. I live in the suburbs and approximately 45 minute from the City of Chicago. When there is construction traffic which is on all major highways one can reach into the city leaving at 5:AM to get into the hospital by 7:AM. I really didn't want to do the surgery until my cough, and cold subsided. Plus one needs another driver when the surgery is being performed. I told the surgeon, not to set the appointment because I didn't want the surgery on my leg. About a week past and that Surgeon place me on a surgery list which the hospital called and gave me a date and time. On Friday of that same day, we experienced a severe thunderstorm and electrical outage, which we left us with 6 days without any electricity. We were experiencing severe hot weather in the Midwest with temperatures soaring in the upper to high 85-90's, hot and humid. We packed a temp. bag and left for a hotel, and make arrangement for our pets which included several fish and our dog. With no electricity, and only candles, we were unable in locating our cell phone electric cords, plus to find a hotel to stay in. It was difficult because most power lines in our suburb was appearing to have busy tones, and due to the problem of no electricity, we were very crippled! The primary gave me a dermatology who prescribed Hydocortisone cream 2.5%, and another cream called TriamcinoloneAcetonide cream USP .1%. The above mentioned goes on leg, truck and the arms for the 1st 2 weeks, then break, then for the next 2 weeks applied again. Well, not lucky with any of the prescribed drugs, the rashes on my hands, arms, and leg are currently blisters from this cream. I haven't even tried the hydrocortisone, because of all the bad side-effects I am running into with the generic brands. Has anyone had these reoccurring rashes from Gleevec 400 mgs.? I called the General Oncology, and asked if I could reduce to Gleevec 300 mgs., or even 350 mgs. and they said no! When I showed up for the CBC, I had asked the nurse who did the CBC if the neutrophils were down, and the nurse said the blood test has nothing to do with allergies, how could this be? Does anybody have any other suggestions for body rashes caused by Gleevec 400 mgs., and hot and humid weather? Thanks, Dory Doggie Quote Link to comment Share on other sites More sharing options...
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