Looking for additional information and resources about CML? Our leukemia forum at CancerCompass.com lets you compare notes and research treatment strategies. http://www.cancercompass.com/message-board/cancers/leukemia/leukemia-(cml)/1,0,119,7,52.htm Sun, 22 Nov 2009 00:00:00 GMT Sun, 22 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ All -  I'm 26/M  and was diagnosed with CML last week.  Wondering if anyone has information on the proper diet for someone with CML.  I'm taking Gleevec 400mg and I know that diet will make a difference in the way I feel, and treatment etc...  Any insight will be great since I'm new to all this. Thanks - Danny http://www.cancercompass.com/message-board/message/all,41636,0.htm dannyd Thu, 19 Nov 2009 00:00:00 GMT Normal 0 false false false EN-US X-NONE X-NONE MicrosoftInternetExplorer4 <w:LsdException Locked="false" Priority="63" Sem http://www.cancercompass.com/message-board/message/all,41267,0.htm wanttohelp2 Wed, 04 Nov 2009 00:00:00 GMT Hi All, Im 33y and newly diagnosed with CML. Hoping to share info. anyone out there? http://www.cancercompass.com/message-board/message/all,40955,0.htm ChiefsFan Fri, 23 Oct 2009 00:00:00 GMT Hi i'm a 42yr female who has been on gleevac for a year liver dosn't like it & my haemotologist now wants to put me in tasigna should i be worried or ask for another opinion??????????? http://www.cancercompass.com/message-board/message/all,40690,0.htm KGWOO Thu, 15 Oct 2009 00:00:00 GMT My 84 year old father was diagnosed with CML three weeks ago. He has been on Gleevec for just over a week, and is having sever muscle pain on his thighs, to the point that he can hardly walk. Is this a common immediate side effect? Also, in looking up research I have not be able to find any information on patients of his age. I'm not sure what to expect his life span to be. Is it better to NOT be on the chemo and let the cancer take its course? This is a man who just had his kidney removed three years ago, due to cancer. I would not say he is in very poor health but he has a lot of medical issues. Does anyone have any information they can provide me please.Thank you,A http://www.cancercompass.com/message-board/message/all,40481,0.htm asynodis Wed, 07 Oct 2009 00:00:00 GMT Please I need your help, This is with me having low income Doctors asked for Gleevec 400mg, I have been asked to find the medicine, Does any one can help how much cost?  Thank you in advance. http://www.cancercompass.com/message-board/message/all,39291,0.htm devdassp Tue, 25 Aug 2009 00:00:00 GMT I have CML and is detected in last month. Currently I m taking Glivec 400mg since last 4 days. Please tell me that can I marry . I have planned in the month of Nov or Dec. My engagement was on 22-03-09.Will it affect my future child?? http://www.cancercompass.com/message-board/message/all,38487,0.htm shail Tue, 28 Jul 2009 00:00:00 GMT I have CML and is detected in last month. Currently I m taking Glivec 400mg since last 4 days. Please tell me that can I marry . I have planned in the month of Nov or Dec. My engagement was on 22-03-09.Will it affect my future child?? http://www.cancercompass.com/message-board/message/all,38272,0.htm shail Tue, 21 Jul 2009 00:00:00 GMT Has anyone experienced blood in the urine while taking Gleevec?  My husband's oncologist, PCP, and 2 urologists don't seem overly concerned about it and say it must be the Gleevec because it's not urological.  Any information and/or experiences to share would be appreciated.Thanks.Lee http://www.cancercompass.com/message-board/message/all,34570,0.htm LadyRx Tue, 24 Mar 2009 00:00:00 GMT My cousin was diagnosed with CML about two years ago.  He is in his mid-thirties now.  We just learned that the Gleevac that had given us so much hope is no longer doing the trick and his doctors have told him he will require a bone marrow transplant.  Please excuse my ignorance but we have no experience with this.  Has anyone else seen Gleevac fail?  What does the transplant entail?  Can I be a donor?  What other options might he have?Any and all information you can provide would be appreciated. http://www.cancercompass.com/message-board/message/all,34130,0.htm Pirate_Gen Thu, 12 Mar 2009 00:00:00 GMT hey all.  I need to hear from evryone within the above age bracket, pls just reply telling me ur age and diagnosis..I need to ask ur advice on something that am trying to do to help people within the above category.. My Basic infor: 23 years oldCMLDiagnosed 2007 may... x http://www.cancercompass.com/message-board/message/all,33407,0.htm ladyd Sat, 21 Feb 2009 00:00:00 GMT I was recently hospitalized with Multiple Pulmonary Embolisms (bilateral, two small on left, one significant and one questionable on right).  In random well-checks over the last few years, I have had elevated platelet counts and low MPV's on CBC's.  My doc at the time just told me I might want to try taking a baby aspirin and try to get my blood drawn from time to time IF I felt like it...it wasn't stressed the importance of this.  That was...until I was in the hospital for 6 days for clots at which time I was seen by my new "best friend" the hematologist.  At that time he told me he couldn't believe I was 31 and in for this and that no one had put me on a strict regimen prior.  I agreed, I had just thought I had a touch of bronchitis or pneumonia when I entered the ER and then to find out I was essentially a walking time-bomb was a shock to say the least.  My new Hematologist was quite puzzled as to what was up with my blood...so...he searched for the Jak-2 v617F mutation and BINGO, got that.  He did a lupus screen which came back Positive on the HEXAGPN, and I also had a high result on my PTT-LA of 55.  I'm negative for FACTOR 5.  My Anti-Thrombin 3 was low at 74.  My eosinophils are through the roof at 10.3.  Absolute Eosinophils are 1.0. My MPV is 6.5 Low, and my Lymph% AUTO is 24.4 low.  My doctor has ruled me as having ET (Essential Thrombocytosis) but is suspecting some other possible culprit.  He is screening me currently for Chronic Myelogenous Leukemia, Myelofibrosis, and (the basic one I'm hoping for at this point: just ET), as well as lupus.  I have epilepsy of unknown etiology since age 17.  I had a bone marrow biopsy just two days ago.  I know this is a long long shot, but could Late Onset Tay Sachs disease also be something we should check into? I am the only person known in my family to have EVER had a clotting disorder or epilepsy.  I was searching info on lupus and stumbled upon it.  Many of the symptoms associated with it sound strikingly intermingled with not only my blood but also my neuro problems.  All I'm wondering is would I be a fool to bring this up to my hematologist?  Yes, if it's not already apparent I am a medical professional, but I don't want to come off as Ms. Smartypants by asking even though I've got the IQ to back it up.  I like to keep my intelligence level to myself for the most part.  ANY FEEDBACK from anyone would be greatly appreciated.  Ever since the word leukemia came into my vocabulary I've been in a emotional spin even bookworms are susceptible to that.  Any advice or opinions will be GREATLY welcomed!Thanks,Gypsyspirit28 http://www.cancercompass.com/message-board/message/all,32460,0.htm Gypsyspirit28 Sat, 24 Jan 2009 00:00:00 GMT Hi :my name is Rihab, i am thirty nine years old ,i was diagnoised with CML one years ago, i am now on Dsatinib medication and i have cytogenic respond after six months, i just would like to talk to someone who is using this medication because i never heared that someone is use it, Thanks and God bless all of you.Rihab http://www.cancercompass.com/message-board/message/all,32273,0.htm Rihab Sun, 18 Jan 2009 00:00:00 GMT I have a close friend in the Philippines who has just been diagnosed with CML  and is being given Busulfan Flurada tablets as their only form of treatment. Can anyone tell me how effective this regimen will be in the treatment of their CML? Thank you for your help in this matter.  http://www.cancercompass.com/message-board/message/all,27740,0.htm gaters Sun, 31 Aug 2008 00:00:00 GMT She was diagnosed approx 4 weeks ago, shes 67. So far the 400mg if Gleevec gave only puffiness around the eyes as a side affect however teh last few days she has stomach cramps, diarrhea, lethargy and just generally feels like crap (her words). Please can someone help me, especially in the best way diet wise to deal with the diarrhea? Many thanks ...... Tinamarias http://www.cancercompass.com/message-board/message/all,26906,0.htm tinamarias Thu, 07 Aug 2008 00:00:00 GMT My son was recently diagnosed with CML. His is 20 years old and this has come as a complete shock to family and friends. He is scheduled for a bone marrow biopsy on Friday and is terrified to say the least. He has not yet started his gleevec and we are trying to be hopeful. Any information is appreciated. http://www.cancercompass.com/message-board/message/all,26854,0.htm NancyFlip Wed, 06 Aug 2008 00:00:00 GMT I hope to see more people posting.  Its so important to share.  It helps you get through it all.  Is anyone having Foot spasms or cramping since on Gleevec.  Mine went away for awhile, but now its back.  Don't know how to relieve it.  I just let it work itself out. http://www.cancercompass.com/message-board/message/all,26498,0.htm Suzzie59 Sun, 27 Jul 2008 00:00:00 GMT Hello, My husband was diagnosed on June 12th. He is on Glewevec (it seems to be working well) but his joint pain is so intense. Anyone have any thoughts on this that we can talk to our doctor about? http://www.cancercompass.com/message-board/message/all,26306,0.htm Trasi_Starr Mon, 21 Jul 2008 00:00:00 GMT My mom just started taking Gleevec one day ago.  She woke up this morning with a red spot in her eye.  Anyone ever experience any syptoms like this??  http://www.cancercompass.com/message-board/message/all,23979,0.htm marlowk8 Tue, 13 May 2008 00:00:00 GMT My friend was DX with CML in 2006.  He started on Gleevac in a clinical trial with a higher than normal dose.  Almost immediately he developed an overall body rash, (except on his face) with intense itching, a high eosinophil count and a small pleural effusion. No tx seemed to be affective for this rash  and the small effusion persisted for over a year.  Eventually Sprycel became FDA approved and he started on this drug. After some tweaking of the dose, things seemed to be wonderful and in fact his recent molecular break down demonstrated excellent control of the CML.  He is due for a bone marrow within the next 2 months.  Unfortunately last week he developed SOB and an xray revealed that he had a 75% effusion in the left lung and they drained off 2 liters of fluid. An xray done within 48 hours of the thoracentesis demonstrated more fluid accumulation already. My questions are:1~ has anyone experienced this intense rash as a side effect of gleevac?2~ if so was there any tx that worked for you3~ Has anyone developed an effusion that was tx related?4~ if so, how  severe and how often do you have to have them drained5~ if you did develop a pleural effusion, did you have fluid build up around your heart!6~ is anyone aware of any other drug out there on the horizon found to be succesful in the tx of CML?  Thanks for your help. http://www.cancercompass.com/message-board/message/all,22941,0.htm babypillar Thu, 10 Apr 2008 00:00:00 GMT My husband was diagnosed in September with CML (chronic myloid lekumia) and it was a big shock to all of us because he has never been sick and never been to the Dr other than one time for stiches. I am not really even sure how to deal with this we have a 3 year old and she is to little to explain what is going on. For the most part right now he is on a new drug called Gleevec and it has really helped him a lot but it is so new that they do not know what the long term effects are. My husband is also hispanic and has no insurance and we have filed for his papers about 3 years ago and we were just called and told that we qualified to move to the next step but that it would include us going to Mexico for 1 to 3 years which would have been fine before but now that my husband has cancer he can not leave the US and continue to get this treatment so we mentioned this to the lawyer and he informed us that if immigration finds out that my husband has cancer then they will not ever allow him to get his green card because they do not want him to draw from our government in the future for his illness. So now we live in fear every day that he could be deported and he will no longer receive the treatment and without the treatment the Dr have said that he will not last long. Then my sister is pregnant with her 5th child and was just diagnosed in March with cervicle cancer and they told her that they can not give her any treatment or do any further test until the baby is born. I am just really having a hard time dealing with all of this and I have no idea what to do. Does anyone have any suggestions? http://www.cancercompass.com/message-board/message/all,22908,0.htm cmlsupporter Thu, 10 Apr 2008 00:00:00 GMT Good Evening,I was diagnosed with CML in November of 2000. My initial treatment was Interferon along with some other clincal trial drugs. Then the miracle pill came a long, Gleevec!! I have been on 600mg a day for 6 years and went into remission about 3 months after starting treatment. I have very little of the few side effects.However, as of late, I have been hemorrhaging in my left eye, this occurs every few days and lasts anywhere from 2 - 5 days. I've been to an eye doctor and my eyes are fine. My Oncologists have taken other blood tests that I'm awaiting results,to ensure that there is no internal bleeding. My regular blood counts have remained normal.Just wondering if anyone else with CML who is taking Gleevec is experiencing this.Thanks for any information and if anyone has any questions for me about my long tenure with Gleevec, Please feel free to write. http://www.cancercompass.com/message-board/message/all,22790,0.htm hes123 Mon, 07 Apr 2008 00:00:00 GMT I was diagnosed with CML last April 4.  I am on Gleevec and doing very well.  The medicine makes my anckles hurt very badly.  I am currently taking Vicodin for the pain.  I don't like to take it because it drugs me sometimes.  I have tried every rub on cream available, and I live to go home to my isqueeze (foot massager).  Does anyone have the same problem or any suggestions? http://www.cancercompass.com/message-board/message/all,22321,0.htm Tinatha Tue, 25 Mar 2008 00:00:00 GMT I have been going to a hematologist/oncologist for approximately 2 years off and on because bloodwork keeps coming back abnormal. About 18 months ago, I had a bone marrow biopsy where cancer was ruled out. Now, my bloodwork results have changed again. I have a low WBC (2.9) and a low neutrophil count (1.4). Today my Dr. said that my LAP score came back at 17, which is still within the normal range of 11-95. However, he mentioned that a score lower than 11 would indicate CML and he wanted to "keep an eye on it". Now I have to wait 2 months and go back for another blood test. I have learned so much because I thought you just go into the doctor and they say YES - you have cancer or NO - you do not. This has not been like that. It has been a huge stresser over a period of months (and years!). Anyway, I would like to know if this is normal or if anybody else's diagnosis was much easier. I have no idea what the next blood test will bring to my life. Help! http://www.cancercompass.com/message-board/message/all,21128,0.htm JMRo4 Wed, 20 Feb 2008 00:00:00 GMT I try to keep up to date with any new developments in regards to ET on my blog with links to all kinds of information about it:http://essentialthrombocytosis.blogspot.com/ http://www.cancercompass.com/message-board/message/all,20677,0.htm EssentialT Wed, 06 Feb 2008 00:00:00 GMT