Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Hi, Jackie, and welcome. These days I guess most folks start right off on Gleevec, although many of our members were diagnosed before there *was* Gleevec. For a lot of people, the side effects go away or lessen after the first few months. For those who don't respond to it or who have untenable side effects that don't subside, there are now altnernative medications. I was diagnosed in 05, took Gleevec and did well on it until recently, and am now switching over to a second-line drug, Sprycel. We are very fortunate to have in our group some dynamite folks whose knowledge is not only very broad but are able to break down the medicalese into easy to understand terms (I am not one of them!). In this group, you'll find information, support, camaraderie, compassion, belly laughs and more. Kind regards, in San Francisco From: jbrooks13411@... Date: Fri, 5 Jun 2009 16:08:22 +0000 Subject: [ ] new to the cml world i was newly diagnosed with cml may 21st,i had a bone marrow biopsy done on june 2nd,results will be back june 11th,i am 40 years old,married with 3 children.i havent started any treatment yet,not until after the biopsy results come back.the doctor is talking about the treatment being gleevec. has anyone taken this and what are the side effects i should look for? _________________________________________________________________ found her dream laptop. Find the PC that’s right for you. http://www.microsoft.com/windows/choosepc/?ocid=ftp_val_wl_290 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Hi Jackie, I was dxed in 2005 at age 38 and I am on 400mg/day of gleevec since. I am doing really well, most side effects went away in the few first months. Response to treatment and side effects vary, but the majority resume a near normal life. Now I just have to take 1 pill a day and get one blood test a month, and the odds of relapsing are around 1%. For most the first year is the main hurdle to pass, following the rate of remission and getting used to the drugs and the new situation. Also communication with doctors can be difficult as Lottie mentioned in a previous post, never hesitate to ask questions here. Once your diagnostic is confirmed and you start taking gleevec the next steps will be getting into blood remission, which means blood test back to normal and usually noted CHR. It takes typically around one month. Then the number of cml cells should go down and it is good to reach complete cytogenetic remission (CCR) in one year, although this vary wildly from 3 months to one year for good responses to treatment. At this point you are pretty much out of the woods and if side effects aren't too bad life is near normal. About 80% of cml patients reach that stage in one year. If the response is inadequate or if side effects are a problem there are now a lot of options with other drugs that work as well or better than gleevec. There are other stages of remission, major molecular remission and PCR undectectable (PCRU) you will see mentioned in our posts and i is good to reach it one day but it is not essential and you can think about that later. I wish you a very prompt remission, Cheers, Marcos. On Fri, Jun 5, 2009 at 9:08 AM, jackie<jbrooks13411@...> wrote: > > > i was newly diagnosed with cml may 21st,i had a bone marrow biopsy done on > june 2nd,results will be back june 11th,i am 40 years old,married with 3 > children.i havent started any treatment yet,not until after the biopsy > results come back.the doctor is talking about the treatment being gleevec. > has anyone taken this and what are the side effects i should look for? > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 468 9926 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Welcome,there are many on Gleevec Myself 4 years at 600 this dec.What is taking so long for treatment!!!What is your count mine was 184,000 White count. Good luck keep posting. ________________________________ From: jackie <jbrooks13411@...> Sent: Friday, June 5, 2009 11:08:22 AM Subject: [ ] new to the cml world i was newly diagnosed with cml may 21st,i had a bone marrow biopsy done on june 2nd,results will be back june 11th,i am 40 years old,married with 3 children.i havent started any treatment yet,not until after the biopsy results come back.the doctor is talking about the treatment being gleevec. has anyone taken this and what are the side effects i should look for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Hi Jackie, I was diagnosed mid Aug 2007. Been on Gleevec since late Aug. I actually had my spleen removed in emergency surgery due to it becoming so enlarged it split. I went to the doc in April, but he didn't catch it. Side effects: Too many to list. No, as you'll see, for most they aren't too bad. Mainly fatigue. Here is my opinion on the important info: TAKE GLEEVEC WITH FOOD. I prefer 'soaky-uppy' (if that is a word) food. Breads, 100 calorie pack of popcorn, animal crackers. A steak and salad does NOT work for me. Yeah, I'm full... but the Gleevec doesn't sit well. Keep a diary of what you eat and how you feel after you take the meds. You'll be able to track better what works and what doesn't. I have to remain still for about 1/2 hour to an hour as not to bounce the meds around in my stomach. Otherwise, I feel very sick. My second been there done that... make sure, if it is available to you, to go to a 'real' CML doctor. It made a WORLD of difference between a 'regular' onocologist with 5 CML patients as compared to the CML specialist as U of M. He 'gets' it. He understands and knows all the weird side effects. He calls me just to let me know my blood draw numbers. I highly recommend it! How old are your children? I have a 15, 14 and 9 yo. Most days they 'forget' that mom is even sick. Which is good. In the beginning though, it was pretty hectic and probably scary for all of us. It was weird, the docs saying " Oh, don't worry about it, there is new meds... and looking up leukemia on the internet! That was scary! You found a good group, with lots of people who have answers! Tammy _____ From: [mailto: ] On Behalf Of jackie Sent: Friday, June 05, 2009 12:08 PM Subject: [ ] new to the cml world i was newly diagnosed with cml may 21st,i had a bone marrow biopsy done on june 2nd,results will be back june 11th,i am 40 years old,married with 3 children.i havent started any treatment yet,not until after the biopsy results come back.the doctor is talking about the treatment being gleevec. has anyone taken this and what are the side effects i should look for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Welcome to the club no one wants to join! Yes, most CML patients immediately go on Gleevec. I have been on Gleevec for six years now and I am doing fine. Yes, there are side effects for many people. Side effects can range from the mild to the OMG! Just keep telling your doctor what is happening with you. Many side effects go away after time and MOST can be dealt with. If Gleevec does not work for you, it works for about 85% of patients, there are other, newer, drugs which can do the trick. Do not give up hope... fight the bastard (CML)! I am 65 and I expect to be around for a long time. > > i was newly diagnosed with cml may 21st,i had a bone marrow biopsy done on june 2nd,results will be back june 11th,i am 40 years old,married with 3 children.i havent started any treatment yet,not until after the biopsy results come back.the doctor is talking about the treatment being gleevec. has anyone taken this and what are the side effects i should look for? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Hi Jackie, I am also new to the CML world. I was diagnosed in February and have been on Gleevec now for 2 months. However, I was started out on 400mg and it wasn't doing anything for me. I have been on 800mg now for 2 weeks and I go to get more blood tests on Tuesday to see if it is working. I have had some side effects from it, headaches, blurred vision, nausea, heavy legs and cramping legs but I have been able to deal with all of them. I would rather have the side effects than taking a chance of the CML getting worse. I'm not one to give any advice on this because like I said, I am brand new to this myself. I wish you all the luck in the world and hope you have a speedy remission. Take care, From: richard_troxel <richard.troxel@...> Subject: [ ] Re: new to the cml world Date: Saturday, June 6, 2009, 1:33 AM Welcome to the club no one wants to join! Yes, most CML patients immediately go on Gleevec. I have been on Gleevec for six years now and I am doing fine. Yes, there are side effects for many people. Side effects can range from the mild to the OMG! Just keep telling your doctor what is happening with you. Many side effects go away after time and MOST can be dealt with. If Gleevec does not work for you, it works for about 85% of patients, there are other, newer, drugs which can do the trick. Do not give up hope... fight the bastard (CML)! I am 65 and I expect to be around for a long time. > > i was newly diagnosed with cml may 21st,i had a bone marrow biopsy done on june 2nd,results will be back june 11th,i am 40 years old,married with 3 children.i havent started any treatment yet,not until after the biopsy results come back.the doctor is talking about the treatment being gleevec. has anyone taken this and what are the side effects i should look for? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Hi Jackie, Welcome to the club that nobody really wants to be a member of. You have lucked in by joining this group. Collectively we are much more knowledgeable about CML than most doctors. Gleevec is the first line treatment for CML. Side effects (if any) tend to go away after a month or two. It is strange how we CMLers tend to blame any new aches, pains, etc on Gleevec. I have been on Gleevec (400 mg) since March 2001. After a while you will actually understand the gobbledygook that appears in my signature. Looking forward to assigning you a number in the Zero Club. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of jackie Sent: June 5, 2009 12:08 PM Subject: [ ] new to the cml world i was newly diagnosed with cml may 21st,i had a bone marrow biopsy done on june 2nd,results will be back june 11th,i am 40 years old,married with 3 children.i havent started any treatment yet,not until after the biopsy results come back.the doctor is talking about the treatment being gleevec. has anyone taken this and what are the side effects i should look for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Hi Jackie- Welcome to the group. I was diagnosed with CML just about a year ago 7/08 and i just recieved the good news that i am in remission (woo hoo). That doesnt mean i can stop taking my 400 mg of Gleevec, just that its doing its job. Drink lots of water and definetly eat when you take the pill, i take mine with breakfast. Check out the LLS website there is really good information and resources there about CML and all the leukemias. This group has given me a ton of emotional and spritual support. No question is off limits, we all have lived through it so it is a different perspective then the medical community. Take Care & keep in touch Karyn > > i was newly diagnosed with cml may 21st,i had a bone marrow biopsy done on june 2nd,results will be back june 11th,i am 40 years old,married with 3 children.i havent started any treatment yet,not until after the biopsy results come back.the doctor is talking about the treatment being gleevec. has anyone taken this and what are the side effects i should look for? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Hi Jackie, I am no longer on Gleevec, but I do remember a thing or two that can help you out. Do not take it on an empty stomach, eat a good meal with it, with milk if you can. You can split the dose, half with one meal, half with another. do not lie down directly after taking gleevec, it can make you sick. Drink plenty of water. side effects could be nausea, diarrhea, rash, but nothing that cannot be handled. I'm one of the old timers, 14 years, but there are a lot that have had it longer than that. CML is no longer a death threat, once you become accustomed to the idea, you will learn to adjust your life to it and not even think about it. Fatigue is also a part of it, learn to rest when you can and don't over task yourself. Also, NO grapefruit products, AT ALL. Your doctor will give you all this information, but sometimes, if they are not CML specialists, they do not know all the little tricks I'm sure everyone will tell you about. Not fun, but better than most cancers, with lots of pluses, no surgery, no radiation, just pills. Where do you live and who do you go to? Good luck, Bobby On Fri, Jun 5, 2009 at 12:08 PM, jackie <jbrooks13411@...> wrote: > > > i was newly diagnosed with cml may 21st,i had a bone marrow biopsy done on > june 2nd,results will be back june 11th,i am 40 years old,married with 3 > children.i havent started any treatment yet,not until after the biopsy > results come back.the doctor is talking about the treatment being gleevec. > has anyone taken this and what are the side effects i should look for? > > > -- a Doyle/dob 1929 DX /CML/1995/Interferon/hydrea 2/00 - Gleevec Trial, OHSU, Dr. Druker 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " " 7/04 - Sprycel Trial, MDACC, Dr. Talpaz 3/05 - CCR 12/07 - Ended trial due to Pleural Effusion 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz #840 Zavie's Zero Club #840 Quote Link to comment Share on other sites More sharing options...
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