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]<cmlhope%[email protected]> > wrote: > Today's Topic Summary > > Group: 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#1263176a951324d9_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=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#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=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a951324d9_group_thread_2>[1 > Update] > - Health > Care<http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a951324d9_group_thread_3>[2 > Updates] > > Topic: New CML > warrior<http://groups.google.com/group/cmlhope/t/29e6667a39b65658> > > [email protected] Jan 14 03:39PM -0500 > ^<http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a951324d9_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] 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] > From: "Ahmed Omar" <[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 > ------------------------------------------------- > > 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 > > > > Topic: Hurting CML research and > CML'ers<http://groups.google.com/group/cmlhope/t/86a315e073f027b8> > > Dorothy Emery <[email protected]> Jan 14 02:52PM -0500 > ^<http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a951324d9_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] Jan 14 02:26PM -0500 > ^<http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#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] 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 > ------------------------------------------------- > > 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 > > > > Topic: Health Care<http://groups.google.com/group/cmlhope/t/3328f7f75e2f6a18> > > kellyelise <[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]> Jan 14 10:29AM -0500 > ^<http://mail.google.com/mail/?ui=2&view=js&name=js&ver=2n73sWqpJa8.en.&am=!Mi2c2SsaQZO5A3Gi0fgGItaReiDqLpkZJ8MbtEaKlVYNpA#1263176a951324d9_digest_top> > > 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]> > To: "CMLHope" <[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 > 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 > ------------------------------------------------- > > 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 >
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