Alan....you are fortunate to be doing so well on Gleevec. A short hand view of my journey is given below. I was not able to take Gleevec and am now on Sprycel. My first bone scan results (PCR) were 0.17 after about 6 months. My blood numbers came down quickly as yours did. I started out on Tasigna in an experimental study at MDA but could not tolerate the side effects. Hang in there...these new drugs are wonderful! Regards, Tom in KY
Tom Dunham, BD:8/1941 DX CML 12-23-2008 MDA Protocol: Tasigna-400mg; 2xday-1/09 Q PCR bone@ 0.17 7/09 Acute Pancreatitis-7/5/09 Stopped Tasigna-7/13/09 Q PCRU blood-7-29-09 ! Started Gleevec-400mg/day-7/31/09 Developed rash ~ 8/19/09 Rash treated with Steriods..improvement Rash worsens~9/22/09 Stopped Gleevec-9/28/09 Restarted Gleevec @300mg/day-10/8/09 Stopped Gleevec-10/13/09-toxic rash\ Q PCR bone-0.05 Started Sprycel @ 100mg/day-10/20/09 Zavie Miller's Zero Club 1292 In a message dated 1/15/2010 10:16:11 P.M. Eastern Standard Time, [email protected] writes: Hello-- I am looking to hear from experienced CML warriors on what to expect during the first year of treatment in terms of quarterly BCR ABL tests and what is good and what is bad progress. I know the goal is a 3 log reduction eventually, but I am curious to find out whether that is likely to drop to that level (if it does) as a linear, monotonically decreasing function or as a something that comes down suddenly and unexpectedly in quarter three or four. I know everyone is different, I am interested in different experiences. Like Ahmed, I am a recent CML warrior, with a diagnosis in November 2009 as an unwelcome present on my 50th Birthday. My name is Alan and I'm from the US (Maryland). Chronic stage, no symptoms, high white count, the bone-marrow confirmed Ph Chromosome positive. Started Gleevec 400 mg on 11/24/2009. I have had no side effects as long as I eat and drink lots of water with the Gleevec. I'm grateful for that. I am hopeful that the Gleevec is as effective as it is tolerable for me. I did achieve a complete hematological response before Christmas (Dec 22), so my white counts and platelets, which had been elevated, are now in the normal range. That is also good but only the first station on this journey. I get my first quarterly BCR ABL (serum) test in February. What would be good progress from those who have been on this road before me? Thanks to anyone who has been there and cares to share their story of the first year of treatment. Alan On Fri, Jan 15, 2010 at 5:10 AM, <[email protected]_ (mailto:[email protected]) > wrote: Today's Topic Summary Group: _http://groups.google.com/group/cmlhope/topics_ (http://groups.google.com/group/cmlhope/topics) * _New CML warrior_ (http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#126 3176a951324d9_group_thread_0) [1 Update] * _Hurting CML research and CML'ers_ (http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ 8MbtEaKlVYNpA#1263176a951324d9_group_thread_1) [1 Update] * _Isn't this list about CML not running down our American go..._ (http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c 2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a951324d9_group_thread_2) [1 Update] * _Health Care_ (http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176 a951324d9_group_thread_3) [2 Updates] Topic: _New CML warrior_ (http://groups.google.com/group/cmlhope/t/29e6667a39b65658) [email protected]_ (mailto:[email protected]) Jan 14 03:39PM -0500 _^_ (http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a 951324d9_digest_top) Welcome and hang in there CML WARRIOR. Gleevec has worked for so many people and I pray it will work for you. Anything you need to know just ask the group. Most of us have been fighting this CML for many years now, and we are still alive and kicking hehe. Blessings, Jeanie<3 In a message dated 1/12/2010 5:05:59 P.M. Pacific Standard Time, [email protected]_ (mailto:[email protected]) writes: Hi Hamed, It's not easy to say welcome to our club, but if your going to be a member this by far is the best club you will find. Their so many people here that will give you advice if need be. Theirs a great bunch of people to help you. Just ask. Greenie -----Original Message----- Date: Tuesday, January 12, 2010 6:49:46 pm To: [email protected]_ (mailto:[email protected]) From: "Ahmed Omar" <[email protected]_ (mailto:[email protected]) > Subject: [CMLHope] New CML warrior Hello, At the beginning I would like to introduce myself, my name is Ahmed, I live in Saudi Arabia, a new warrior in the world of chronic myeloid leukemia, where I have been diagnosed for the first time in the 01/01/2009, I started on Imatinib after 11 days, and the dose is 400 mg, one tablet per day. I have suffered from daily of pain in the joints and bones, with feeling unwell and the desire to vomit, especially because I toke the Indian version of Gleevec, and after taking the Swiss edition of the treatment the symptoms disappeared after 3 days gradually. Thank God, the insurance company is covering my situation, Gleevec 400Mg x 30 tablets monthly costs here in Saudi Arabia only U.S. $ 3352.00. Until now I'm still on Gleevec at the same dose as instructed by the doctor, who advised me no to stop taking it because that there is no medical information indicates the way to stop taking Gleevec. Generally I ask God that we can soon eradicate all types of cancers, and end the suffering o -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) Topic: _Hurting CML research and CML'ers_ (http://groups.google.com/group/cmlhope/t/86a315e073f027b8) Dorothy Emery <[email protected]_ (mailto:[email protected]) > Jan 14 02:52PM -0500 _^_ (http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a95132 4d9_digest_top) Whoever wrote this sounds frightened and angry--so I hope this makes you feel a bit better. You don't seem to have a good understanding about how medical research works in the US but it is and has been for quite a while--largely a US federal government endeavor. The NIH and NCI with our tax dollars has funded research of over 40 Nobel prize winners and I don't think anyone who looks into this can deny that this has been a huge success. Those of us with CML should be grateful for all the tax dollars that went into the basic research that eventually led to the Gleevec. Research is also done with donated dollars and drug company dollars--but the largest part of research dollars has been tax dollars. I'm the advocacy leader in Western North Carolina for the Leukemia & Lymphoma Society and my responsibility in this capacity has been to lobby in Washington for more & continued federal funding for research for blood cancers. The LLS funds a lot of research but the amount spent by the LLS is a drop in the bucket compared to the amount contributed by tax dollars. We would not be where we are today (in my case alive) without the basic research done with our tax dollars. This has added years of life for many many people--including almost everyone with a CML diagnosis. So when you get all worked up about something like this--stop and do some research first. You don't need to worry that research will be negatively impacted. It doesn't actually have much, if anything, to do with the health care legislation--but the US government has been doing a great job of this for many years and there is no reason to believe it won't continue. The only threat to this funding has been a conservative ideology which wants the private sector to do everything. The problem is the private sector doesn't do basic research as they are motivated by short term gain and can't wait afford to pay for research that may or may not pay off within a few years. We would need to wait for a very long time if we were to insist that only private donations and corporate research were used. We certainly wouldn't have Gleevec yet. Dorothy On Dec 29, 2009, at 7:09 AM, jhlane wrote: Topic: _Isn't this list about CML not running down our American go..._ (http://groups.google.com/group/cmlhope/t/523d90df1dde645a) [email protected]_ (mailto:[email protected]) Jan 14 02:26PM -0500 _^_ (http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2 c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a951324d9_digest_top) Atta girl suzie, we are not misinformed people, we are people that come here to share our experience, strength and hope with each other. I think its called principles before personalities. God bless you all, Frank In a message dated 1/13/2010 5:47:18 P.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Jeanie: Your last statement here made me almost laugh out loud! Is there a place where we can go where we can get all we want out of life???? I want to know, cos' if there is, I'm getting my ticket first thing! But on the serious side.....I agree with everything you said here 100%. I have "sworn" off watching, listening, or reading the news because I've decided that they are not truthful.....or the ones who are, use it to scare the living daylights out of you. I am much happier now & not so "angry" about who's doing what or what "might" be coming. Those out there may say I'm just sticking my head in the sand, but no, I choose to live my life "my way" not "their way" & that's what makes a big difference. I'll have my say at the voting booth come election time. Now, that said....let's get back to what's important here people.....our health & living with CML! God Bless You All, Suzieq -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) Topic: _Health Care_ (http://groups.google.com/group/cmlhope/t/3328f7f75e2f6a18) kellyelise <[email protected]_ (mailto:[email protected]) > Jan 14 07:04AM -0800 _^_ (http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a951324d9 _digest_top) I'm with you Michael! And Suzieq, I too, have quit watching the news because I'm sick and tired of the untruths and attempts to manipulate the American people. We are all in this together and healthcare affects our group to a great degree regardless of "political affiliation." I worry far too much, but, with good reason as I did not receive ANY medication or treatment while I wandered in limbo between insurance coverage and COBRA kicking in. As a result, the CML came back. I am now happy to say I am back in "remission" so to speak and am hoping and praying my insurance company doesn't decide that they need their deductible prior to my receiving any more medication. I simply can't afford it. This coming August I am eligible for Medicare. I pray the rules don't change in the meantime. God Bless Everyone! Kelly "C.M. Houtz" <[email protected]_ (mailto:[email protected]) > Jan 14 10:29AM -0500 _^_ (http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a951324d9_digest_to p) Hi Kelly, I agree with you about watching the news and getting a lot of untruths, etc. We all need good health care. If you have it already, it isn't going to be taken away. I happen to be among the lucky ones who have it, and it's all from the government and working quite well. People are afraid of the unknown and I understand this too. I hope that all goes well and that your Medicare will kick in and be a good thing for you. I have that and Tri-care for life as my husband retired from the military after 20 years. He also retired from the state, and we had wonderful coverage, which was pulled from us and left us hanging. I was a wreck after that until I decided to drop it and go to Tri Care. None of us ever know what's going to happen with our health care and can just pray that it will all work out okay. I pray that yours will......Stay in touch and let us know how you're doing. I'm so glad you're in remission. Millie. ----- Original Message ----- From: "kellyelise" <[email protected]_ (mailto:[email protected]) > To: "CMLHope" <[email protected]_ (mailto:[email protected]) > Sent: Thursday, January 14, 2010 10:04 AM Subject: [CMLHope] Re: Health Care I'm with you Michael! And Suzieq, I too, have quit watching the news because I'm sick and tired of the untruths and attempts to manipulate the American people. We are all in this together and healthcare affects our group to a great degree regardless of "political affiliation." I worry far too much, but, with good reason as I did not receive ANY medication or treatment while I wandered in limbo between insurance coverage and COBRA kicking in. As a result, the CML came back. I am now happy to say I am back in "remission" so to speak and am hoping and praying my insurance company doesn't decide that they need their deductible prior to my receiving any more medication. I simply can't afford it. This coming August I am eligible for Medicare. I pray the rules don't change in the meantime. God Bless Everyone! Kelly ---------------------------------------------------------------------------- ---- ---------------------------------------------------------------------------- ---- No virus found in this incoming message. Checked by AVG - _www.avg.com_ (http://www.avg.com/) Version: 8.5.431 / Virus Database: 270.14.139/2619 - Release Date: 01/13/10 19:35:00 -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
-- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
