CancerCompass message board discussion started by Cameron on 2/16/2005 http://www.cancercompass.com/message-board/message/all,1574,0.htm Mon, 08 Sep 2008 00:00:00 GMT Mon, 08 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hey I'm Cameron, I'm 16 and I've recently been diagnosed with CML. I would just like to know if anyone has experienced any of the following symptoms due to the drug glivec... Colour; is anyone more pale then before and finds it hard to develop a tan? Sick; Is anyone constantly sick and gassy, constantly needing to go to the toilet (especially after physical activity) Does anyone find that having a large breakfast every morning with glivec really helps you deal with the day alot better then if u had a mild breakfast with your glivec? I would also just like to mention to kids around my age, that if your reading, the faster u accept what we have the easier it will be to see that the problem can be avoided, that you can get along with your normal life. You may be faced with the mental issue of confronting the disease straight away but the sooner it is realised the sooner you can begin the process of healing it and talking about it comfortably with your mates. Kind regards, Cam Cameron Wed, 16 Feb 2005 00:00:00 GMT Hi Cam, Just wanted to let you know my husband is on Gleevec for CML. The only side effects he has experienced are small rashes and puffiness around the eyes. Otherwise he is doing well on it. Keep your positive thinking. Jen Teddy Mon, 21 Feb 2005 00:00:00 GMT Hey, thanks for that Jen. Hope your husband is doing well and the drug continues to be a success. Good luck. Cam Cameron Fri, 04 Mar 2005 00:00:00 GMT Hi Cameron, My son (14) was diagnosed 2 weeks ago. Do they tell you that you should go for BMT (Bone Marrow Transplant)? He has a consult for that next Friday in Philly. He started his Gleevec last Friday and he seems so tired and isn't eating much. As far as the other side-effects, he hasn't complained of them. Tena Thaddena Mon, 15 Aug 2005 00:00:00 GMT Hi! My 10 year old daughter, Lauren, was diagnosed with CML about 3 weeks ago. She is currently on Gleevec and is awaiting a BMT. She has mild side effects, such as hungrier than normal, which is good because she has lost some weight. I wish you the best. Cyndship Mon, 26 Sep 2005 00:00:00 GMT Hey Tena, I have been told that their is no point getting a BMT until i stop responding to the gleevec. It is just an added risk that i do not need to take. As for being tired, that is completely normal, the gleevec will eventually sort that out until he is back to normal (in terms of red blood cell count). Loss of apetite seems to be something up and down for me as a result of the gleevec so I am sure it is nothing to worry about. Cam Cameron Wed, 28 Sep 2005 00:00:00 GMT Hey Cam, They are telling me that the best option for my son (Thad) is to get the BMT within one year of diagnosis. They also want to use stem-cells instead of the actual marrow. They say the chances of a BMT not "taking" are worse if you wait. All these different opinions...and not knowing which to act on is driving me crazy. Tena Thaddena Thu, 29 Sep 2005 00:00:00 GMT I was also told that my daughter should have a BMT within the first year. I am a bit terrified because of the risks involved because I do not have any other children and would have to depend on an unknown donor. Is is better to wait? My daughter is only 10 and seems to be doing fairly well on Gleevec. Cindy Cyndship Thu, 29 Sep 2005 00:00:00 GMT I am in the same boat Cindy-no sibs, so it would be an URD. I also had a doctor at Hershey Medical tell me that the stem cell w/t-cell depletion that the Children's Hospital in Philly recommended was not a good idea. He then started quoting mortality rates. It is all so very scary. How is someone supposed to decide, with so many differing opinions??? Tena Thaddena Thu, 29 Sep 2005 00:00:00 GMT I don't know what to do. I am terrified of making the wrong decision. My oncologist is originally from St. Jude and he recommeds the BMT. I just read all that can go wrong but I don't know what life daughter will have with CML and Gleevec. Her counts are now abnormally low, so she is off meds this week. She will be getting 300 mg next week. She seems to be doing ok on the drug and I'm afraid that the BMT could cause more harm than good. Yet, I have been told that BMT is the right thing. No matter what I decide I feel I live the life of my child in the hands of luck. Cindy Cyndship Mon, 03 Oct 2005 00:00:00 GMT I was diagnosed with CML about a month ago. The first problem I had was indigestion. I am taking Gleevec 400 Mg's. My doctor has me taking Prilosec each morning for two weeks and then taking pepcid after that. Both are over the counter and seem to be doing the trick. I have also had a back ache and problem with gout, so I am also taking Allopurinal. At first the doctor had me on 600 Mg's of Gleevec and my white blood count went down from 97 to 32, but my platelets went from 238 to 89, so he reduced the strength. I was first diagnosed after having blurry vision at time. The doctor did a blood test for diabetes and discovered CML. I hope things are going well for you. Mary Mary Catherine Mon, 29 May 2006 00:00:00 GMT  On 2/16/2005 Cameron wrote:Hey I'm Cameron, I'm 16 and I've recently been diagnosed with CML. I would just like to know if anyone has experienced any of the following symptoms due to the drug glivec... Colour; is anyone more pale then before and finds it hard to develop a tan? Sick; Is anyone constantly sick and gassy, constantly needing to go to the toilet (especially after physical activity) Does anyone find that having a large breakfast every morning with glivec really helps you deal with the day alot better then if u had a mild breakfast with your glivec? I would also just like to mention to kids around my age, that if your reading, the faster u accept what we have the easier it will be to see that the problem can be avoided, that you can get along with your normal life. You may be faced with the mental issue of confronting the disease straight away but the sooner it is realised the sooner you can begin the process of healing it and talking about it comfortably with your mates. Kind regards, CamHi Cameron:  Not sure if you still go on here to check messages, but your young, and will do very well I am sure.  I am a lot older than you, but I have had all the same symptoms as you, plus some. The Gleevec was a life saver for me.  I am in remission since 2001.  I feel the side effects are worth it.  I hope things have improved since you posted your message.                                              Suzzie59 Suzzie59 Sat, 12 May 2007 00:00:00 GMT