Latest Leukemia (CML) discussions http://www.cancercompass.com/message-board/cancers/leukemia/leukemia-(cml)/1,0,119,7,52.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 Its been a long process since the last time that I posted a message. I have been on 100mg of Gleevec for a few months now after starting out at 400 then down to 200 and finally ending up at my present dose. However now i am having pain that is growing in intensity as well as areas affected and frequency. Is this caused from needing to up my dosage or what? Please let me know of your experiences. http://www.cancercompass.com/message-board/message/all,19712,0.htm Nightcrawler76 Mon, 14 Jan 2008 00:00:00 GMT My 23 yr old daughter is being tested for Leukemia, she had an slightly high WBC of 11.7 for over a year..... she does smoke maybe 1 cigarette a day, and sometimes will go 2 to 3 days without smoking.  She was having some joint pain in her feet, which was contributed to gout, because she had a high Euric Acid level. She had a BMB done, and we just got the test results back, but still need to see the doctor.Can anyone dealing with CML, make anymore sense of the tests results, while we wait in the mean time.It looks like they did not get enough biopsy for a clear diagnosis....1). Suboptimal Specimen with Cellular Bone Marrow2). Slightly left shifted Granulopoiesis3). Absent Storage Iron with no ringed sideroblasts4). Moderate Increas in Reticulin FibersFISH anaylsis shows no BCR/ABl translocation (AGT07-8093). Although there is no apparent evidence of CML, chronic myeloproliferative disorder can not be completely excluded.  Cytogentics studies may be helpful by finding re-occuring cytogentic changes typically associated with CML.  Re-biopsy is recommened if indicated.  Correlation with clinical and other diagnostic information is recommended. WBC  11.7 ;  Neutrophils 71 % ; Hemoglobin 13 ; Hematorcit 39.4 %; Lymphocytes 27%; Monocytes 1 %; Eosinophils 1 %Bone Marrow Differential Count:  Number of Cells counted: 300Myeloid Cells 76% ; Erythroid Precursor Cells 3 % ; lymphocytes 19%; Monocytic Cells 1%; Blasts 1 %The C-Kit also stated:  Stained rare scattered myeloid precursor cells.What does all this mean??  Any input is greatly appreciated.Thank youLisa http://www.cancercompass.com/message-board/message/all,19144,0.htm Lisaj Wed, 26 Dec 2007 00:00:00 GMT I was concerned that I had Leukemia or Lymphoma, but was diagnosed with Multiple Myeloma.  The cancer doc told me that if I had Leukemia I would have blast cells in the bone marrow.  However, after doing some research, I found information that CML does not have blast cells.  Is this true? http://www.cancercompass.com/message-board/message/all,17659,0.htm roadrunner Sun, 04 Nov 2007 00:00:00 GMT I am a 31 year old patient who was just diagnosed with CML today(10.25.07) and just want a patients P.O.V. on what is in store for me. All I have been told so far is that this is the form to get if you're unlucky enough to get one, but that is a doctor's words I want to hear it from patients because the messages I have read so far from everyone is that they are in constant pain. Please let me know http://www.cancercompass.com/message-board/message/all,17412,0.htm Nightcrawler76 Fri, 26 Oct 2007 00:00:00 GMT Hi:  I would like to be able to correspond with anyone who would like to share or want information on my experience with CML.It is okay with me to let them have my e-mail address if it is permissable.It is --Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--   Sometimes people do not feel like posting on a message board.                                                            Thank You                                                                     Suzzie 59 http://www.cancercompass.com/message-board/message/all,17310,0.htm Suzzie59 Mon, 22 Oct 2007 00:00:00 GMT I am 3 weeks into my diagnosis.  The range of emotions is nuts.  I had 150,000 wbc and was put on Gleevec 400mg.  It worked so well that in this short time I am now down to 2,900.  Now I am on 200mg until the wbc goes back up some.  I wish there was more info about Gleevec and time frame. I homeschool a 9 & 13 and have a grandson also.  My husband is in school full time and I was working......boy life sure can throw out a wild card.Sherry  http://www.cancercompass.com/message-board/message/all,17246,0.htm 150%Grand&Mom Fri, 19 Oct 2007 00:00:00 GMT I am interested in learning some info from anyone that is taking Sprycel... initial side effects, how long the side effects lasted, and any other information to share. Thanks...  Keith http://www.cancercompass.com/message-board/message/all,16261,0.htm Keith S Tue, 18 Sep 2007 00:00:00 GMT hi my name is cindy and my dad was just diagnosed with (cml) just about 1 month shy...he just started chemo about 10 days ago . they have him with a start of a low dose because of his age, 61 and he has a inregular heart beat,...he just finished his 10 day..this past thursday,...any help out there ..were at standford hospital in palo alto calif.... http://www.cancercompass.com/message-board/message/all,12517,0.htm Cindyangel11 Tue, 29 May 2007 00:00:00 GMT Hi:  This might be a repeat. Do not think my  last message went through, but anyhow my name is Susan and I am in remission with CML since July of 2001.  If anyone needs to just share or have any questions that I might be able to answer I would be glad to hear from you.     I was not a candidate for a BMT, and achieved my remission on a dose of 400Mg. a day of Gleevec. I Thank God Everyday.    I am due for my check-up on my remission in June.  Sometimes you just need somebody who is going through the same thing to talk to.  My e-mail is --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----                                                             http://www.cancercompass.com/message-board/message/all,12186,0.htm Suzzie59 Fri, 18 May 2007 00:00:00 GMT My husband was diagnosed with CML in October 2006. Started gleevec 600 mg/day. Couldn't tolerate - in hosital 10 days. Reduced gleevec to 400 mg/day. In hospital three weeks. Now they say will try some else. No gleevec now for 5 weeks. Out of hospital for two weeks. White count was 7, platelets were normal. White count is going back down (3.7 today). Don't plan on any new treatment until Feb 5. Think he will be able to tolerate any treatment? http://www.cancercompass.com/message-board/message/all,8849,0.htm Lillie Mon, 15 Jan 2007 00:00:00 GMT My good friend has rollerbladed across canada and is currently declaring oct 15 as hope for leukemia day. Hope for leukemia day is to share success stories of patients with leukemia and specifically patients with CML. The website is www.hopeforleukemia.com .. Paul http://www.cancercompass.com/message-board/message/all,7218,0.htm Paulpaul Thu, 12 Oct 2006 00:00:00 GMT I was diagnosed with CML July 2004. After a year on Gleevec I'm no longer in remmision, I've started Interferon 6mil shots every day. Since I was diagnosed I have had bone and joint pain that is only getting worse by the day. Could my bone and joint pain become cancerous??? I'd appreciate any info that anyone could give me. Thank You, Jude http://www.cancercompass.com/message-board/message/all,6339,0.htm Judest7 Sun, 06 Aug 2006 00:00:00 GMT My husband was diagnosed with ALL at 35 (see previous posts under ALL) and I have not posted in a long time. He went through ALL treatment for 2 years and finished in Nov 05. Ever since his treatment was over, his white's have been slightly elevated. The Dr. wanted to wait for a few months to see if they came down..she thought it could be an accumlative effect from the prednison etc. Last week she decided to do some extensive blood work...the results came back with the marker of CML (aka the Philidelphia chromosome). He has had CML the ENTIRE time and we had no idea. God only knows how this went undetected for 3 years of biopsies etc. The ALL was actually a secondary off shoot of the CML know as a 'blast'. So, here we go again. We are scheduling consults with Dr's at MD Anderson in Texas as well as Fred Hutchinson in Seattle. He was just put on Gleevec, so we will wait to see how that works. From my research, the only true cure is a BMT...any feedback from anyone would be greatly appreciated. We are terrified, but in war-business mode this time. Beth http://www.cancercompass.com/message-board/message/all,6269,0.htm Beth73 Tue, 01 Aug 2006 00:00:00 GMT My 10 year old daughter, Lauren, was diagnosed with CML this past September. I was told that she would need a BMT, I have no other children therefore she will need an URD. I was told of two methods to prepare the body prior to transplant, full body radiation or a new method, photoferesis. Has anyone heard of this method or anyone that has went through it? I just don't know what to do. They both sound scarey. Help. http://www.cancercompass.com/message-board/message/all,3411,0.htm Cyndship Sun, 06 Nov 2005 00:00:00 GMT My 10 year old daughter Lauren was diagnosed with CML on September 8, 2005. She is currently on 400 mg of Gleevec and awaiting a bone marrow transplant. She was recently put on the list since I have no other children. I have been told that CML is rare in children, but was wondering if anyone knew of a child with CML? http://www.cancercompass.com/message-board/message/all,3049,0.htm Cyndship Mon, 26 Sep 2005 00:00:00 GMT My name is Alicia from Spain. My 39 years old husband was CML diagnosed April 04. He's on 400 mg. Gleevec and has complete cytogenetic remission. I'd like to contact anyone in similar conditions or having taken gleevec for long but nothing else before. At the same time I'd like to talk with someone who already went under bone marrow transplant with a compatible sibling donor. My husband has one perfect match donor brother. Thanks, prayers and good luck to everyone reading this. Suffering makes people very near to each other, sometimes...My best feelings across the ocean. Alicia. http://www.cancercompass.com/message-board/message/all,2518,0.htm Alispain Tue, 19 Jul 2005 00:00:00 GMT 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 http://www.cancercompass.com/message-board/message/all,1574,0.htm Cameron Wed, 16 Feb 2005 00:00:00 GMT