Guest guest Posted April 6, 2010 Report Share Posted April 6, 2010 Hey all- I have been battling this rash like many of you for about a year now. It has taken over my face now. It feels just like someone on here had described, an orange peel. It is bumpy, blistery, red, burns and itches. It is on both side of my temples, and in the entire socket of my left eye. I have a swollen eye socket as well. I have been to internal med, oncologist, dermatologist. The derm. is sending me to a specialist to perform a " patch test " to see if their are chemicals in my environment that could be playing into it. I have been given every lotion, cream and ointment under the sun. Today I am starting a Medrol dose pack (steroids) to see if that will help. It is a short term fix if anything. I guess the next step is to reduce my Spyrcel from 100mg down to 70mg and see if it helps. Although the oncologist (not a CML specialist) doesn't think it is dose related. Maybe the next step is off to the next drug...... I left Gleevec due to horrific side effects and intolerability after 2 years and now Sprycel for 2 1/2 years. I have been PCRU for almost 3 years on both of the drugs and have had almost a 4 log reduction. The drugs work well on me, just trying to maintain with side effects. Does anyone have a similar story or experience they can share with me or do you have any suggestions.....I am all ears! I enjoy hearing stories that show similarities. It reminds me that I am not alone in this. LoL. Wishing everyone the very best!!!! RN Gleevec 800mg until 8/07 sprycel 100mg since Wife and mom of 3 (14,11,9) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2010 Report Share Posted April 6, 2010 Nope. Well, I guess yes....I take Ibuprofen for my muscle and bone pains and I take Zofran/Compazine as needed for the nausea. But have been on them for years. Jen In a message dated 4/6/2010 9:59:35 A.M. Central Daylight Time, onthewtr@... writes: , Are you on any other medications besides sprycel?? Sharon _____ From: _@..._ (mailto: ) [mailto:_@..._ (mailto: ) ] On Behalf Of _vegasrnjen@..._ (mailto:vegasrnjen@...) Sent: Tuesday, April 06, 2010 7:31 AM _@..._ (mailto: ) Subject: [ ] Rash with Sprycel Hey all- I have been battling this rash like many of you for about a year now. It has taken over my face now. It feels just like someone on here had described, an orange peel. It is bumpy, blistery, red, burns and itches. It is on both side of my temples, and in the entire socket of my left eye. I have a swollen eye socket as well. I have been to internal med, oncologist, dermatologist. The derm. is sending me to a specialist to perform a " patch test " to see if their are chemicals in my environment that could be playing into it. I have been given every lotion, cream and ointment under the sun. Today I am starting a Medrol dose pack (steroids) to see if that will help. It is a short term fix if anything. I guess the next step is to reduce my Spyrcel from 100mg down to 70mg and see if it helps. Although the oncologist (not a CML specialist) doesn't think it is dose related. Maybe the next step is off to the next drug...... I left Gleevec due to horrific side effects and intolerability after 2 years and now Sprycel for 2 1/2 years. I have been PCRU for almost 3 years on both of the drugs and have had almost a 4 log reduction. The drugs work well on me, just trying to maintain with side effects. Does anyone have a similar story or experience they can share with me or do you have any suggestions.you have any suggestions.<WBR>....I am all e show similarities. It reminds me that I am not alone in this. LoL. Wishing everyone the very best!!!! RN Gleevec 800mg until 8/07 sprycel 100mg since Wife and mom of 3 (14,11,9) [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2010 Report Share Posted April 6, 2010 , Are you on any other medications besides sprycel?? Sharon _____ From: [mailto: ] On Behalf Of vegasrnjen@... Sent: Tuesday, April 06, 2010 7:31 AM Subject: [ ] Rash with Sprycel Hey all- I have been battling this rash like many of you for about a year now. It has taken over my face now. It feels just like someone on here had described, an orange peel. It is bumpy, blistery, red, burns and itches. It is on both side of my temples, and in the entire socket of my left eye. I have a swollen eye socket as well. I have been to internal med, oncologist, dermatologist. The derm. is sending me to a specialist to perform a " patch test " to see if their are chemicals in my environment that could be playing into it. I have been given every lotion, cream and ointment under the sun. Today I am starting a Medrol dose pack (steroids) to see if that will help. It is a short term fix if anything. I guess the next step is to reduce my Spyrcel from 100mg down to 70mg and see if it helps. Although the oncologist (not a CML specialist) doesn't think it is dose related. Maybe the next step is off to the next drug...... I left Gleevec due to horrific side effects and intolerability after 2 years and now Sprycel for 2 1/2 years. I have been PCRU for almost 3 years on both of the drugs and have had almost a 4 log reduction. The drugs work well on me, just trying to maintain with side effects. Does anyone have a similar story or experience they can share with me or do you have any suggestions.....I am all ears! I enjoy hearing stories that show similarities. It reminds me that I am not alone in this. LoL. Wishing everyone the very best!!!! RN Gleevec 800mg until 8/07 sprycel 100mg since Wife and mom of 3 (14,11,9) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 Maybe the > next step is off to the next drug...... I left Gleevec due to horrific > side effects and intolerability after 2 years and now Sprycel for 2 1/2 years. > I have been PCRU for almost 3 years on both of the drugs and have had > almost a 4 log reduction. The drugs work well on me, just trying to maintain > with side effects. > RN _______________________________ Hi , I think some of us are more 'prone' to rashes and that we may get them with any of the drugs. I had a Gleevec rash (mild) for a year....I got rid of it with an alternative allergy elimination tech. that I don't have available now. On Sprycel, I mostly had dry, itchy skin and scalp for the first 6 months.....then pretty good but had to change drugs after 4 years because of pleural effusions. I have been on Tasigna for just a month and have that orange peel face type of rash, and small bumps on trunk and arms....and VERY itchy (the worst so far).....but it may be improving some. This is probably the worst rash I have had so far on a drug. So hard to say if switching drugs for you, to Tasigna, will be a positive thing or not, but might be worth a try. For the present rash I do detox baths which relieve the itch for a period of time, use antihistamines for the itch....and also emu oil is a great moisturizer that I use on my face. The sides of my face feel like a rough, dry sandpaper and the emu oil is soothing. Good luck with this. C. Quote Link to comment Share on other sites More sharing options...
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