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I am hoping this post to the postings..please let me know. I have been
trying and never see my comments or questions.
Lisa Dx 12-21-02
800 mg
Gleevec --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group.
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--- Begin Message ---CMLHope http://groups.google.com/group/CMLHope [email protected]Today's topics: * Is it YOUR DREAM - 2 messages, 2 authors http://groups.google.com/group/CMLHope/browse_thread/thread/fd948b9eaf4df78c * Hi - I am new - 6 messages, 6 authors http://groups.google.com/group/CMLHope/browse_thread/thread/7567e4beed689e4f * New here...and ? about Gleevec - 6 messages, 5 authors http://groups.google.com/group/CMLHope/browse_thread/thread/4b58a94f0422ce08 * deep vein thrombosis - 2 messages, 2 authors http://groups.google.com/group/CMLHope/browse_thread/thread/f41ebe002e4ff5a1 * Renee - 1 messages, 1 author http://groups.google.com/group/CMLHope/browse_thread/thread/6cd58f572193b3fd * I am just amazed - 1 messages, 1 author http://groups.google.com/group/CMLHope/browse_thread/thread/9035977565c9277d * Hi - I am new/Trey - 1 messages, 1 author http://groups.google.com/group/CMLHope/browse_thread/thread/3c920bd0f8a03f8d * Hi - I am new/Sandy - 1 messages, 1 author http://groups.google.com/group/CMLHope/browse_thread/thread/1bc5c6268e3b80fd * Hi - I am new/Gay - 1 messages, 1 author http://groups.google.com/group/CMLHope/browse_thread/thread/88fb2e5ebe199079 * Hi - I am new/Rob - 1 messages, 1 author http://groups.google.com/group/CMLHope/browse_thread/thread/eae84e289fb14e00 * Hi - I am new/Anjana - 1 messages, 1 author http://groups.google.com/group/CMLHope/browse_thread/thread/e482726959ae601 * this is a test - 1 messages, 1 author http://groups.google.com/group/CMLHope/browse_thread/thread/30216a06ae77c230 * 2nd anniversary - 1 messages, 1 author http://groups.google.com/group/CMLHope/browse_thread/thread/4b7015a520bd7491 ============================================================================== TOPIC: Is it YOUR DREAM http://groups.google.com/group/CMLHope/browse_thread/thread/fd948b9eaf4df78c ============================================================================== == 1 of 2 == Date: Thurs, Jun 8 2006 1:14 am From: "happypaulwong" Can you imagine having - More time to spend with your family and friends? - Freedom to work when, where, and with whom you choose? - The ability to vacation whenever you want? - More income than bills at the end of the month? - A life without debt? - Tax deductions on items you pay for anyway? - Your own business where you work as your own boss? - Recognition for your hard work? Then I may have the solution you've been looking for. Find out what thousands of others have discovered to be the answer to their search for time, financial, and personal freedom. It only takes a few minutes and I think you'll be impressed. Please visit the link below and see if this incredible opportunity is for you. http://www.unitoday.com/hfpres/index.cfm?distid=2617449 http://www.msihk.com/happypaulwong/ == 2 of 2 == Date: Thurs, Jun 8 2006 9:59 am From: Émile Fichault I'm not agre with this kind of post . I don't need garbage in this discussion group . Emile # 527 Zavie's Club ----- Original Message ----- From: "happypaulwong" <[EMAIL PROTECTED]> To: "CMLHope" <[email protected]> Sent: Thursday, June 08, 2006 4:14 AM Subject: [CMLHope] Is it YOUR DREAM > > > Can you imagine having > - More time to spend with your family and friends? > - Freedom to work when, where, and with whom you choose? > - The ability to vacation whenever you want? > - More income than bills at the end of the month? > - A life without debt? > - Tax deductions on items you pay for anyway? > - Your own business where you work as your own boss? > - Recognition for your hard work? > Then I may have the solution you've been looking for. Find out what > thousands of others have discovered to be the answer to their search > for time, financial, and personal freedom. It only takes a few minutes > and I think you'll be impressed. Please visit the link below and see if > this incredible opportunity is for you. > > http://www.unitoday.com/hfpres/index.cfm?distid=2617449 > > http://www.msihk.com/happypaulwong/ > > > > > > > -- > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.394 / Virus Database: 268.8.2/357 - Release Date: 2006-06-06 > > ============================================================================== TOPIC: Hi - I am new http://groups.google.com/group/CMLHope/browse_thread/thread/7567e4beed689e4f ============================================================================== == 1 of 6 == Date: Thurs, Jun 8 2006 3:20 am From: "disneyprincess" My mother was diagnosed with CML last week. She is into her 2nd week in the hospital due to a very high platelet count which they can't seem to get under control. I joined this group to gather information about cml and I am sure once she is out of the hospital she will join as well. They aren't yet treating it but were talking about using Gleevex. She has been on Hydroxy for the platelets and so far has had 3 plasmaferesis treatments to get the platelets down. Yesterday her white count dropped so they did not give her a dose last night. In addition, 6 years ago she developed 2 lung embolisms which were treated. Because she isn't getting better and is continuing to have seizure like episodes, blacking out and losing her bodily functions, they are now looking to make sure she does not have any blood clots in her system. Gayle == 2 of 6 == Date: Thurs, Jun 8 2006 5:30 am From: "Trey" Welcome Gayle, and we all wish the best for your mother. Many of us started with high platelets, which is common in CML patients. For me, it was the first sign that I was developing CML. The doctors are using hydroxyurea, which does treat the CML to some degree, not just the platelet problem. You see that her white blood cell count has already dropped, which is a good sign. Here is a brief summary of hydroxyurea and CML: http://health.yahoo.com/topic/leukemia/medications/article/healthwise/tv7492 Once the current problem is figured out, Gleevec will become important. Most of us on this website will tell you that it is very important to work with an oncologist that is experienced in dealing with CML, especially if there are complications such as your mother is having. Please keep us posted on progress. --Trey dx CML Oct 2005 == 3 of 6 == Date: Thurs, Jun 8 2006 5:53 am From: Sandy Johnson Hi Gayle,Welcome to the group.My husband has CML. His White counts were real high at dx,he was giving hydroxy at first and than on gleevec.His platelets also went over one million.It took a few weeks to get that under control.How old is your mother?Randy is 55. This is a good group to be in,every one is kind and will try to answer any questions you have.Hang in there thing will get better with time.there are a lot of ups and downs with CML at first,but it doe's get better for most people.Love and prayers for your Mom and you,Sandy disneyprincess <[EMAIL PROTECTED]> wrote: My mother was diagnosed with CML last week. She is into her 2nd week in the hospital due to a very high platelet count which they can't seem to get under control. I joined this group to gather information about cml and I am sure once she is out of the hospital she will join as well. They aren't yet treating it but were talking about using Gleevex. She has been on Hydroxy for the platelets and so far has had 3 plasmaferesis treatments to get the platelets down. Yesterday her white count dropped so they did not give her a dose last night. In addition, 6 years ago she developed 2 lung embolisms which were treated. Because she isn't getting better and is continuing to have seizure like episodes, blacking out and losing her bodily functions, they are now looking to make sure she does not have any blood clots in her system. Gayle __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com == 4 of 6 == Date: Thurs, Jun 8 2006 9:07 am From: "Gay Bratton" Gayle, Welcome. You will get lots of good information from this group. You did not mention your Mother's age. Many people here have had good results on Gleevec, including me. I have been on a trial since 1999 and have continually decreasing counts of Ph+ cells. It is not a cure, but for most has worked wonderfully well. There are documented side effects and low blood counts is one of them. Usually the dose can be altered to help the situation. Others include diarrhea episodes, eye bleeds, "thin" skin that tears easily, puffy eyes, etc. Most of the time the problems are minor compared to those from medications before Gleevec existed. Doctors with lots of experience with Gleevec can usually handle these problems. Best wishes to you and your Mom. Gay Bratton -----Original Message----- From: [email protected] [mailto:[EMAIL PROTECTED] On Behalf Of disneyprincess Sent: Thursday, June 08, 2006 5:20 AM To: CMLHope Subject: [CMLHope] Hi - I am new My mother was diagnosed with CML last week. She is into her 2nd week in the hospital due to a very high platelet count which they can't seem to get under control. I joined this group to gather information about cml and I am sure once she is out of the hospital she will join as well. They aren't yet treating it but were talking about using Gleevex. She has been on Hydroxy for the platelets and so far has had 3 plasmaferesis treatments to get the platelets down. Yesterday her white count dropped so they did not give her a dose last night. In addition, 6 years ago she developed 2 lung embolisms which were treated. Because she isn't getting better and is continuing to have seizure like episodes, blacking out and losing her bodily functions, they are now looking to make sure she does not have any blood clots in her system. Gayle == 5 of 6 == Date: Thurs, Jun 8 2006 9:56 am From: Rob Welcome to the group. I hope your mother will soon be much better. Gleevec works extremely well and she should see really good results once she is started. Rob On 6/8/06, disneyprincess <[EMAIL PROTECTED]> wrote: > > > My mother was diagnosed with CML last week. She is into her 2nd week > in the hospital due to a very high platelet count which they can't seem > to get under control. I joined this group to gather information about > cml and I am sure once she is out of the hospital she will join as > well. They aren't yet treating it but were talking about using > Gleevex. She has been on Hydroxy for the platelets and so far has had > 3 plasmaferesis treatments to get the platelets down. Yesterday her > white count dropped so they did not give her a dose last night. In > addition, 6 years ago she developed 2 lung embolisms which were > treated. Because she isn't getting better and is continuing to have > seizure like episodes, blacking out and losing her bodily functions, > they are now looking to make sure she does not have any blood clots in > her system. > > Gayle > > > > > -- Powered by NewOrleansEmail.Com http://neworleansemail.com == 6 of 6 == Date: Thurs, Jun 8 2006 9:17 am From: "anjana" Hi Gayle, Some patients I know who had high platelet counts took a drug called Anagrelide (Agrylin) to control the platelet counts. So, this is something to discuss with the doctor if the platelet counts are still a bit high on Gleevec. I am sure Gleevec will work very well for your Mom. Platelet apheresis works well in the short-term for lowering the platelet counts. Just curious, you mention that your Mom had lung embolisms a few years ago, did she have a high platelet count then, as well? Best Wishes, Anjana caregiver to Roy ============================================================================== TOPIC: New here...and ? about Gleevec http://groups.google.com/group/CMLHope/browse_thread/thread/4b58a94f0422ce08 ============================================================================== == 1 of 6 == Date: Thurs, Jun 8 2006 6:57 am From: "caronpea" Hello Everyone! My name is Caron and I am new to the board. I was diagnosed on June 2, 2006 with CML and I'm 43 yrs. old. My doctor has started me out at 400ml of Gleevec, and I started on this yesterday. For those of you taking Gleevec and have had side effects, How long was it before you had the side effects? I'm just wondering. I'm really hoping I'll escape any side effects. From what I've been reading on other posts, those who have the side effects have had them for quite a while after being on the drug. Thanks for any information you can give! Have a great day. Caron == 2 of 6 == Date: Thurs, Jun 8 2006 7:03 am From: "Allyson Morris" Caron- Welcome. I am 29 and was diagnosed when I was 27. It took about 2 weeks for me to have side effects from 800mg of Gleevec, which I still currently take. I had a slue of side effects and still have some that continue to linger. All in all, none of my side effects were or are that debilitating. Have a good day- Allyson From: _"caronpea" <[EMAIL PROTECTED]>Reply-To:[EMAIL PROTECTED]: _"CMLHope" <[email protected]>Subject: _[CMLHope] New here...and ? about GleevecDate: _Thu, 08 Jun 2006 06:57:29 -0700>>Hello Everyone!>> My name is Caron and I am new to the board. I was diagnosed on>June 2, 2006 with CML and I'm 43 yrs. old. My doctor has started me>out at 400ml of Gleevec, and I started on this yesterday.>> For those of you taking Gleevec and have had side effects, How>long was it before you had the side effects? I'm just wondering. I'm>really hoping I'll escape any side effects. From what I've been>reading on other posts, those who have the side effects have had them>for quite a while after being on the drug.>> Thanks for any information you can give! Have a great day.>>Caron>>> == 3 of 6 == Date: Thurs, Jun 8 2006 9:57 am From: Rob Welcome to the group. Rob On 6/8/06, caronpea <[EMAIL PROTECTED]> wrote: > > > Hello Everyone! > > My name is Caron and I am new to the board. I was diagnosed on > June 2, 2006 with CML and I'm 43 yrs. old. My doctor has started me > out at 400ml of Gleevec, and I started on this yesterday. > > For those of you taking Gleevec and have had side effects, How > long was it before you had the side effects? I'm just wondering. I'm > really hoping I'll escape any side effects. From what I've been > reading on other posts, those who have the side effects have had them > for quite a while after being on the drug. > > Thanks for any information you can give! Have a great day. > > Caron > > > > > -- Powered by NewOrleansEmail.Com http://neworleansemail.com == 4 of 6 == Date: Thurs, Jun 8 2006 10:01 am From: "Lisa Kennedy" My daughter (age 10) was diagnosed with CML in May 2005. She has had a happy, healthy year. She has very occasional nausea and some eye puffiness. Other than that, she feels terrific and recently won several ribbons at a regional track meet. Keep your chin up. Most people with CML feel well and are expected to lead long and healthy lives. Lisa ob wrote on 6/8/2006, 10:57 AM: Welcome to the group. Rob On 6/8/06, *caronpea* <[EMAIL PROTECTED] <mailto:[EMAIL PROTECTED]>> wrote: Hello Everyone! My name is Caron and I am new to the board. I was diagnosed on June 2, 2006 with CML and I'm 43 yrs. old. My doctor has started me out at 400ml of Gleevec, and I started on this yesterday. For those of you taking Gleevec and have had side effects, How long was it before you had the side effects? I'm just wondering. I'm really hoping I'll escape any side effects. From what I've been reading on other posts, those who have the side effects have had them for quite a while after being on the drug. Thanks for any information you can give! Have a great day. Caron -- Powered by NewOrleansEmail.Com http://neworleansemail.com <http://neworleansemail.com> == 5 of 6 == Date: Thurs, Jun 8 2006 12:58 pm From: "Annie" Hello Caron Sorry about your diagnosis, but glad you have found this board. Between this one and the Asian Support Board, I have learned SO much! They have kept me sane. My 22 year old son, Steven, was diagnosed with CML in March this year. He immediately started 400mg Gleevec and apart from being tired has absolutely no side effects at all. Sometimes I run through the list of side effects with him, but nothing - at all! This is wonderful and we hope it stays this way :-) I wish this lack of side effects for you too....... The only time he felt sick with taking the pill was when it did not get down his throat quickly enough one day, and started dissolving in his mouth - you should have seen his face! He carries an extra pill in a keychain pillholder for those times he makes unexpected plans and has said this has helped tremendously already. Love and Light Annie (mom of Steven) www.livingwithcml.blogspot.com == 6 of 6 == Date: Thurs, Jun 8 2006 3:51 pm From: "caronpea" Thank you guys for all the information! Annie, I was just reading your blog earlier today! What a coincidence. Thanks again everyone! Caron ============================================================================== TOPIC: deep vein thrombosis http://groups.google.com/group/CMLHope/browse_thread/thread/f41ebe002e4ff5a1 ============================================================================== == 1 of 2 == Date: Thurs, Jun 8 2006 9:20 am From: "anjana" Dear Mary, I know only a few patients having deep vein thrombosis. Does Joe have a higher than normal platelet count? DVT is not very common in CML but I know a few patients who have had it. Best Wishes, Anjana caregiver to Roy == 2 of 2 == Date: Thurs, Jun 8 2006 10:42 am From: "sassy" Anjana; His plt are fine 169. He will be released tomorrow. Let's see what he does next. ( ha) Mary ============================================================================== TOPIC: Renee http://groups.google.com/group/CMLHope/browse_thread/thread/6cd58f572193b3fd ============================================================================== == 1 of 1 == Date: Thurs, Jun 8 2006 1:01 pm From: "Renee" Thanks Barb for your very encouraging email. I try to stay positive. It seems I go through bouts of worry. Usually when it's time for me to go to the doctor for my next round of tests. ============================================================================== TOPIC: I am just amazed http://groups.google.com/group/CMLHope/browse_thread/thread/9035977565c9277d ============================================================================== == 1 of 1 == Date: Thurs, Jun 8 2006 1:54 pm From: "Rosie" I have to say I am impressed by the support that every one give. I just got back my bone marrow results and it confirmed that I am in the chronic phase. Right now I am not feeling to great but I am not sure if it the Gleevec or I am coming down with something. Everyone at work it not feeling that great. I am looking forward to getting rid of the fatigue. That is the worst. ============================================================================== TOPIC: Hi - I am new/Trey http://groups.google.com/group/CMLHope/browse_thread/thread/3c920bd0f8a03f8d ============================================================================== == 1 of 1 == Date: Thurs, Jun 8 2006 8:47 pm From: [EMAIL PROTECTED] Thank you for that article link. She is being treated by a prominent blood specialist at Columbia Presbyterian Hospital in New York so that is not a concern. Gayle ============================================================================== TOPIC: Hi - I am new/Sandy http://groups.google.com/group/CMLHope/browse_thread/thread/1bc5c6268e3b80fd ============================================================================== == 1 of 1 == Date: Thurs, Jun 8 2006 8:48 pm From: [EMAIL PROTECTED] Thank you so much for your wishes for my mom. She is 73. Gayle ============================================================================== TOPIC: Hi - I am new/Gay http://groups.google.com/group/CMLHope/browse_thread/thread/88fb2e5ebe199079 ============================================================================== == 1 of 1 == Date: Thurs, Jun 8 2006 8:50 pm From: [EMAIL PROTECTED] Thank you for that information. This is going to be a big learning experience for our family. Today they took the catheter out of her neck as her platelets seem to have stablilized at about 650,000 for the past two days, still too high but the medication seems to be kicking in. Has anyone here had passing out associated either with high platelets before they were under control? Gayle ============================================================================== TOPIC: Hi - I am new/Rob http://groups.google.com/group/CMLHope/browse_thread/thread/eae84e289fb14e00 ============================================================================== == 1 of 1 == Date: Thurs, Jun 8 2006 8:50 pm From: [EMAIL PROTECTED] Thanks so much for your best wishes. Gayle ============================================================================== TOPIC: Hi - I am new/Anjana http://groups.google.com/group/CMLHope/browse_thread/thread/e482726959ae601 ============================================================================== == 1 of 1 == Date: Thurs, Jun 8 2006 8:51 pm From: [EMAIL PROTECTED] When my mom had her lung embolisms they never mentioned anything about high platelets. Gayle ============================================================================== TOPIC: this is a test http://groups.google.com/group/CMLHope/browse_thread/thread/30216a06ae77c230 ============================================================================== == 1 of 1 == Date: Thurs, Jun 8 2006 8:57 pm From: "JudyPrusky, Calgary" Hi everyone. I am trying this to see if I can post. Hugs to all. Judy in Calgary Hugs, Judy P. in Calgary __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com ============================================================================== TOPIC: 2nd anniversary http://groups.google.com/group/CMLHope/browse_thread/thread/4b7015a520bd7491 ============================================================================== == 1 of 1 == Date: Thurs, Jun 8 2006 6:31 pm From: "Zavie Miller" Hi Suzan, You are # 918 in the Zero Club. Hope you get the new drug soon and it resolves the side effects. Zavie On 6/6/06, Suzan Collins <[EMAIL PROTECTED]> wrote: > > Hi all > I just celebrated my 2nd anniversary on June 4th. I went into complete > remission in March this year. I am in Zavie's zero club but do not remember > my number. Chalk that up to my brain fog. LOL at least I am alive even with > all the side effects. Today the doctor told me that all is still good. > Nothing unusual except that my potassium continues to stay low even on > potassium tablets. Now the doctor has upped me again to three potassium > tablets. Another side effect of Gleevec has been that my chest hurts and it > causes me to have a rapid heart beat according to the heart doctor. So he is > giving me meds to lower the heart rate. It was at 120 now down to 100 but he > wants it at around 60. On my first anniversary last year I bought myself a > small diamond ring. This year I went over board and bought my self a new > Saturn VUE fully loaded even with a sun roof. I figure I deserved something > big this year. MMMMMM wonder what next year will bring. The doctor did say > that as soon as the new drug is approved she will be putting me on that to > see if the side effects improve. > Suzan > > __________________________________________________ > Do You Yahoo!? > Tired of spam? Yahoo! Mail has the best spam protection around > http://mail.yahoo.com > > > -- Zavie Miller (age 67) 67 Shoreham Avenue Ottawa, Canada, 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 PCRU 5/02 at RVH 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: [EMAIL PROTECTED] Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 Yahoo ID: zaviem ============================================================================== You received this message because you are subscribed to the Google Groups "CMLHope" group. 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