The Leukemia & Lymphoma Society - Fighting Blood Cancers
61 Replies Latest reply: Jul 29, 2012 10:03 PM by Sharon RSS

Information for the CML Newly Diagnosed

Trey Registered Users
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We all remember how helpless we felt when newly diagnosed with CML, and how this support group helped us. The information below covers a variety of subjects, starting with general information, and going to more  specific information about CML. When getting started it helps to know  where to find just a very few of the more useful resources regarding  CML. This information may also help avoid the numerous out-of-date (and needlessly scary) websites that would only cause undue anxiety, which is  what most people find when initially searching the internet for information about CML leukemia, especially related to survival, prognosis, life span, and other important issues.  Such information is also useful to help family and friends understand what the newly  diagnosed CML patient is facing. And the news is generally positive,  since the outlook for CML has greatly improved over the past decade.

In general, the outlook for CML has changed significantly for the better since 2001 when Gleevec was approved for treatment. This drug changed CML from a deadly disease into one that is highly survivable for most people, with less impact on our quality of life than prior to 2001.  Additional CML drugs (Sprycel,Tasigna, Bosulif, & Iclusig) have also been approved, and more are being developed. As a result of these extraordinary new drugs, the overall probability of surviving CML is now about 95%. This compares with numbers that were very poor prior to the introduction of Gleevec. 

 

If  anyone has landed on this website through an internet search, you have found a CML Support Group sponsored by the Leukemia & Lymphoma Society (L&LS) where we all share our collective information about  living with CML leukemia. We are a group of CML patients, caregivers, family & friends who help each other, but we are not doctors. Here is our home page if you wish to join us:http://community.lls.org/community/bloodcancer/livingwith/cml/content?filterID=content~objecttype~objecttype[thread]

 

To start with some good news, if you have just been diagnosed with CML, below is a summary article that shows the dramatic changes in treating and surviving CML as a result of the drugs that have been approved since  2001. The article says that “In a study of patients with chronic myeloid leukemia, some 95 percent have survived the cancer after five years due to treatment with Gleevec...”
http://www.sciencedaily.com/releases/2006/12/061207160526.htm

A recent article declared that CML patients have achieved a life expectancy similar to the normal overall population because of these drugs:

http://www.drugs.com/news/leukemia-patients-gleevec-achieve-normal-death-rate-30274.html

Dr Brian Druker, a leading CML specialist who was instrumental in the development of Gleevec, said  "we assume that most CML patients will now live a normal lifespan".  Because Gleevec was only approved in 2001, CML experts had previously hesitated to put a time-frame on expected survival due to lack of data, even though they often said it could be significant.  In 2010 Dr Druker said "Today, more than 100,000 lives have been saved by Gleevec. In May of  2001,  Gleevec was approved by the FDA in record time. Now, the five-year survival rate is 95% for this previously fatal leukemia. People diagnosed with this leukemia were once told they had five years to live, or less; now we are projecting 30."  This should be very encouraging, and especially encouraging to young people with CML, since lifespan estimates appear to be close to "normal" as more data is accumulated and more drugs are developed.

In 2012 a leading CML expert, Dr Neil Shah, stated: "it appears that the likelihood of dying of CML is approximately equivalent to the likelihood of dying of other causes, and it is hoped that with longer follow-up and more access to effective next-generation TKIs, the majority of chronic-phase CML patients, in stark contrast to historical experience, will die of causes unrelated to CML or its treatment."

http://www.cancernetwork.com/chronic-myeloid-leukemia/content/article/10165/2107596

 

News articles about how CML has become a very survivable disease:

http://jnci.oxfordjournals.org/content/early/2011/03/23/jnci.djr127.full

http://www.nytimes.com/2010/01/19/health/19brod.html?partner=rss&emc=rss

 

It is important for patients, family, and friends to know the following:  1) CML has changed from a poor prognosis to a very good prognosis due to  our three drugs – the survival rate is around 95%; much internet  information is very out-of-date on this issue because of the recent advances in CML drug therapy; 2) bone marrow transplant has become a  very rare event for those with CML, where in the past it was a primary  therapy; 3) CML is probably the most likely leukemia to have a cure discovered in the reasonable future, according to CML experts.  This information does not mean every person will respond the same way to drug  therapy, and there is still a small percentage chance of not surviving CML, but the overall news is very positive.

The Leukemia & Lymphoma Society (L&LS) Online Overview provide information for the newly diagnosed:

http://www.lls.org//attachments/National/br_1169054588.pdf#/resourcecenter/freeeducationmaterials/leukemia/cml

Information from leading CML specialist Dr Brian Druker:

http://www.ohsu.edu/edcomm/flash/flash_player.php?movie=adm/OHSU%20Knight.flv&width=320&height=240&title=The%20End%20of%20Cancer%20Is%20Within%20Reach

(NOTE: In link above start about 1/4 way through to skip the intro stuff)

Animation showing the chromosome translocation that creates the BCR-ABL gene that causes CML, and also how CML TKI drugs work:
http://www.youtube.com/watch?v=7ZMVQ1Vbb7Y

Video Presentations on CML and Treatment:
http://www.leukemia-lymphoma.org/all_page?item_id=161418http://www.lls.org/#/resourcecenter/pastprograms/leukemia/

Here is an article which outlines the history of how Gleevec changed the treatment of CML (somewhat long but a good read):

http://www.smithsonianmag.com/science-nature/A-Victory-in-the-War-Against-Cancer.html?c=y&page=1

Information on Managing CML:

 

http://cmlinfo.org/CMLmonitoring.html

http://bloodjournal.hematologylibrary.org/cgi/content/full/110/8/2828

http://community.lls.org/community/bloodcancer/livingwith/cml/content?filterID=content~objecttype~objecttype[thread]

Time Magazine article from when Gleevec was first approved in 2001:

http://www.time.com/time/magazine/article/0,9171,999978,00.html?internalid=ACA

The Leukemia & Lymphoma Society has a live person help line available to answer questions about CML:
1-800-955-4572

If you wish, before you call the L&LS CML Helpline, you can also search our support group website using the search button in the upper  right part of the web page. You can search for discussions we have had  regarding many subjects such as drug side effects, understanding test results, and many other subjects. Or just join our support group and start posting questions.

http://community.lls.org/community/bloodcancer/livingwith/cml/content?filterID=content~objecttype~objecttype[thread]

Here is information that might be useful right away regarding CML by popular topics:

http://ubb-lls.leukemia-lymphoma.org/ubb/Forum17/HTML/000868.htmlhttp://community.lls.org/people/Trey?view=documents

Here is a blog I have put together discussing numerous CML related subjects listed A - Z:

http://treyscml.blogspot.com/

This information is trying to fill a need to help the CML Newbie get started, and to help eliminate the unnecessary shock of sorting through outdated information about CML on the internet that will needlessly scare you, your family, and friends. So much has changed in such a short time due to the new CML drugs. As a result, you will very likely live a long and mostly normal life, and without requiring a marrow transplant.  A few will still not be so fortunate, but research continues to make advances, and new drugs are coming along to help those who are not currently doing as well. There is much to be hopeful about, and much to  be grateful for. We are here if you need us, so please join in and learn  along with us about living with CML leukemia.

http://community.lls.org/community/bloodcancer/livingwith/cml/content?filterID=content~objecttype~objecttype[thread]

  • Re: Information for the CML Newly Diagnosed
    Susan61 Registered Users
    Currently Being Moderated

    Hi Trey:  That posting was fantastic.  We are getting so many newbies.  I have trouble keeping up with all that is going on sometimes myself.  Everything anyone needs to know is right there in your message.  They should also know they can go to you anytime for an answer to any question they might have.  We are so blessed to have you to turn to.

  • Re: Information for the CML Newly Diagnosed
    MaryZ Registered Users
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    Trey,

     

    Amazing, just amazing. Thank you for putting such meticulous work into this post!

     

    My husband was dx'd with CML on 5/12/09 and I feel like I have "googled" endless for insight. This is the most comprehensive post so far.

     

    You are a warrior for those of us who are scared and in need of the technical info that has our heads swirling about.

     

    --M.

  • Re: Information for the CML Newly Diagnosed
    snuggles181 Registered Users
    Currently Being Moderated

    Hello

         I have recently been Diagnosed with CML I also suffered from ET and Sjorgrens . Now that I have CML they tell me I know longer have ET( high platelets) I have to say my emointal levels about all this was in the beginning very high  they unknown was really getting to me. The day I had my 4th BMB they told me it was going to take 2 weeks before I new anything. The nest day I was called to the Cancer Clinic I was so scared trying so very hard not to cry but that did not happen when asked the nurse why I was told it would be two weeks before I would know anything, I was call in today she said sometimes they get call from Toronto becase there was a rush but on this.  After a wait for the doctors of 1/2 hour he finally came in. I was so scared I was not crying at this time. he sais to lay down he check my spleen and neck I sat up he said I don't have the results yet!!!!! at that moment my world game down I was crying uncontrolable he said I'm sorry I didn't mean to upset you . I need to talk to you about putting you on Hydrea.  I stop crying and from that day on I have felt more anger no tears then nothing.. When I was called back to the clinic three days later the doctor that was talking over my doctor who was on holidays saids to me well you have CML and we are putting you on Gleevec now remember It is just me the doctor and my husband in the room I hear the words leukemia and my husband and the doctor are talking about the drugs Tarciava and Gleevec ok that is fine still have no emotions about anything other then a flat line as I call it. the nurse said she will fax the prescription to the drug store remember I am to be put on Gleevec.  I get a call from the drug store late in the afternoon as to what the doctor put me on. they could not read his writing. I said he put me on Gleevec they said that is not what it looks like the said this other drug that started with a T and I said oh he must have but me On Tarceva instead they said we will call the cancer clinic and see. sure enough it wa not Gleevec it was this other drug now remember my Husband was the one talking about the drugs me my nind was else where. When my husband came home I told him and said we should go up to the drug store to find out what it was and see the prescription that was  wrote.  We saw it and he said to them this is not what the doctor said he was putting me on. I asked what was this drug for they said for LUNG CANCER. i said I don't have that I have Leukemia she said this drug is the total opposite of what you need. she said you better find out what is going on. By this time the clinic is closed I called the next morning and tell the nurse what happen and she said she will find out and get back to me hour later I get a call from here saying they have faxed a new prescription for me  for Gleevec. NO I'm sorry or nothing.  i have no emotions left and I can't seem to get any I feel sometime real anger and want to strangle the next person who saids to me on  your lucky they have a pill out that almost cures you I have said me peace I hope and sorry if I ramble on but I need so bad to talk to people who understand having CML

  • Re: Information for the CML Newly Diagnosed
    TSM Registered Users
    Currently Being Moderated

    Dear Trey,

     

    This is a very good attempt from you to inform and teach about actual CML to the Newly Diagnosed from your real life experiences. We all thank you. Keep it up. You are real strength of this community.

     

    With Regards and Prayers,

    TSM

  • Re: Information for the CML Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    Seems like we have a number of newly diagnosed folks joining in, so am bumping this up for their review.

  • Re: Information for the CML Newly Diagnosed
    KathyK Registered Users
    Currently Being Moderated

    Trey, thank you so much for all your effort! My family thanks you. There is so much to digest and these posts really do take some of the fear away and give me the strength to get through these side effects and strive for remission or better! Thanks again. KathyK

    • Re: Information for the CML Newly Diagnosed
      shoboy041 Registered Users
      Currently Being Moderated

      i was also diagnosed in july 2009 was on hydrea for 4 month b4 i switched to gleevec,am new with gleevec and my first side effect was raches on my face after 3 weeks am scared

      • Re: Information for the CML Newly Diagnosed
        MomMom Registered Users
        Currently Being Moderated

        Try not to freak out to much.  I had a rash on my arms and face that scared me.  My oncologist and my dermatologist both said it was a result of Gleevec.  Also, gave me a lotion to use to help and it does help.  I still have the rash, but it is much better and mostly not noticeable to anyone but me.  Please remember we are here for you.  Ask any questions that come to your mind.  Can you call your doc or his nurse and ask about something to relieve the rash?  Also avoid hot water on the rash, if you can, it will only make it itch.

         

        MomMom

        • Re: Information for the CML Newly Diagnosed
          shoboy041 Registered Users
          Currently Being Moderated

          Thanks so much  MomMon for your advice am greateful , i just bought a cream also that countains sulphur i used it yesteday and felt some changes, but i believe it will help me alot.

          However, av read alot about gleevec and fertility on the male side on the internet and heared from my doctor also, i want to know if my sperm count will improve because the  hydrea i used for four month has really affected my sperm cell  because an just 27 and still single.

          The only thing am praying for in my life now is to have a child of my own. i want to be a father before i leave the earth someday

          • Re: Information for the CML Newly Diagnosed
            dennis65 Registered Users
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            Dumb question.  I read a lot about Gleevac and some other drugs being used.  But, I see nothing about folks that don't take any cures.  I am on Social Security and have no insurance.  I wonder how this newly diagnosed CML will develop if I can't get medication??????????

            • Re: Information for the CML Newly Diagnosed
              Randofu Registered Users
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              Novartis has a very generous patient assistance program for those people unfortunate enough to be burdened with a combination of low income and lack of insurance.  You will still need to be able to visit your doctor regularly, but at least when I registered for it I believe that anyone who's under five times the poverty line and has no insurance can get Gleevec for free. I'm not completely sure about this since I just started it, but I think that the company that makes Sprycel has such a program as well, and Tasignia is also made by Novartis so I imagine you can do the same for that.

               

              Without the medicine, I think it's a question of when CML comes to collect, not if.  My understanding is less than five years, but I could be wrong. It's unfortunately very expensive, but I think in the end no one wants anyone to die, and a good social worker will help you manage the cost appropriately.

              • Re: Information for the CML Newly Diagnosed
                dennis65 Registered Users
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                OK Randy.  I am sure my doctor will have some suggestions as well.  Am newly diagnosed and curous as well since its the weekend here and can't get ahold of my Doctor.  Its kind of a concern.  Not sure if the VA will cover this at this time.

            • Re: Information for the CML Newly Diagnosed
              houtex54 Registered Users
              Currently Being Moderated

              Dennis,

               

              That is a good question. The answer is more troublesome.  My insurance would pay for 80% of my meds, but the remaining 20% would still be like having another car or rent monthly payment.

               

              There are some programs that can help defray the high costs.  Some are government, like medicare, most are private grants or subsidies often from the manufacturers of the drugs themselves.

               

              If you have insurance that is helping with the medication costs, keeping yourself insured goes from merely important to critical on your priority list. I'd say it would be a good thing to research alternative strategies for paying for your meds now, even if you are currently making ends meet.  The costs may come down some as the patent protection expires, but probably not enough to consider it as a low-cost item.  The manufacturing techniques are difficult, and have a very low product yield.  Besides, patent expiration date can be pushed back in some circumstances, so it would not be wise to count on that as a strategy, anyway.

               

              Prognosis without treatment for me when I was first diagnosed two years ago was about 6 months even on Gleevec. Fortunately, they were probably wrong about that.  Nevertheless, I applied for inclusion in a clinical trial for a 2nd generation medication which has worked out very well.  The condition I was in by the time I quit denying the severity of the symptoms and got diagnosed - well, I can only say that six months would have been optimistic without some effective treatment.

               

              Doug

              • Re: Information for the CML Newly Diagnosed
                dennis65 Registered Users
                Currently Being Moderated

                Interesting information.  Will get more from the VA next week.  They are my only lifeline at this time.

                 

                Thanks very much.

                • Re: Information for the CML Newly Diagnosed
                  lthouse612 Registered Users
                  Currently Being Moderated

                  Hello Dennis,

                  If you have access to your VA Hospital... they will cover this, so long as

                  you have a service related disability rating.  On top of my CML I have live

                  issues that are service connected so my meds for Gleevec is only $8.00.  You

                  can also be seen by their oncologists as well.  I had to go this route due

                  to my losing my job and insurance.  After 2 years of being dx I am now also

                  able to have medicare.  I'm 36 yr old and was dx in 2006... I still am seem

                  by both my original oncologist's office as well as the VA, just in case I

                  can prove it was service connected.  Hope that helps you a bit..Good Luck to

                  you!

                  Mark

                  • Re: Information for the CML Newly Diagnosed
                    dennis65 Registered Users
                    Currently Being Moderated

                    Thanks Mark.  I doubt I can prove my CML is service related.  Am 63 years years old now and left the Navy when I was 20 years old.

                    So, will have to chat with them about it and get some resources from them and do some research for myself. Have already got some good info here.

                     

                    I am a new VA patient and they are the ones that found the CML through blood tests just last week.  At the VA, I am listed as a category 5 VA patient with no service related disorders.  Had to go to the VA since I lost my medical coverage when my company went bankrupt recently.  Life is a bitch sometimes. :-)

                    Luck to you as well Mark.

            • Re: Information for the CML Newly Diagnosed
              Susan61 Registered Users
              Currently Being Moderated

              Hi Dennis:  No question is ever a dumb question.  Sorry to hear you have had to join a group for CML, but you came to the right place.  Everyone is always willing to help each other out, and a lot of times you will find others going through exactly what you are going through.

                   Being newly diagnosed, the last thing you need to worry about it how to get the medication to take care of your CML.  I was diagnosed in 1998, and I did have insurance.  Then my husband was out of work, and I was on Disability.  I filled out the application for assistance, and I qualified for 1 year until my husband was able to get insurance again.  We did have COBRA so there was no lapse in my coverage as far as dealing with a pre-existing condition with a new insurance.  I do get my Gleevec from my husbands insurance plan.  I have to get all my medications with a 90 day supply.  I pay $80.00 for a 90 day supply, but then Novartis gave me additional help for one year which takes $15.00 off of my original co-pay.

                  You just need to search a lot of things out, but there is all kinds of help, especially if your income fits into their allowance.  It will all work out.

                   Hope you get help through the VA also.  A lot of pressure is supposed to be put on them this year to do more for the Vets who have served our country.

              Susan

              • Re: Information for the CML Newly Diagnosed
                dennis65 Registered Users
                Currently Being Moderated

                Yeah Susan.

                 

                Doing research now and looks like there is some help out there if you look for it.Even with the manufactures of the drugs.

                 

                Thats very encouraging.

                 

                Thanks and best wishes to you.

                • Re: Information for the CML Newly Diagnosed
                  Susan61 Registered Users
                  Currently Being Moderated

                  Hi Dennis:  So glad to give you some encouragement.  I know people have given it to me when I needed it the most, and it does help you to move on with your decisions and coping with the CML and the money.

                       I was so distraught over the whole situation back in 1998 when I was diagnosed, and I was not a candidate for a BMT.  I was doing the Interferon treatments along with an additional shot of ARA-C, which a lot of us did.  I was in limbo with the whole thing, until I could get into the clinical trial with Gleevec.

                  There is always light at the end of the tunnel, and something works out.

                       I like to share my experiences anytime that somebody wants to know anything.  Just stay positive.

                  Susan

              • Re: Information for the CML Newly Diagnosed
                mountaindreamer1 Registered Users
                Currently Being Moderated

                hi susan,

                 

                          My husband was very lucky in one way that our insurance co pay for the gleevec is only $35.00.  The sad thing is we bought a 100 yr old house in Pa last year and have been fixing it up and this year planned on making the big move from jersey and our jobs to PA.

                 

                          Now we feel like we cannot make the move because of the insurance and the cost of the gleevec.

                 

                          It is sad and very agravating...

                 

                         We keep hoping that somehow it will all work out. But truthfully we do not know what to do.

                 

                 

                dawn

  • Re: Information for the CML Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    Several new folks have joined recently, and this thread may be useful.

  • Re: Information for the CML Newly Diagnosed
    SDPartner Registered Users
    Currently Being Moderated

    Trey,

    Thank you so much for this post. It totally changed my whole outlook. I have not yet been diagnosed. I see the hematologist in 9 days. I'm already symptomatic, though the problem was brought to our attention because CBCs since Feb have showed immature granulocytes on and off. (I have multiple chronic illnesses already, so I was getting weekly CBCs and chemistry for med monitoring.) Reading about CML elsewhere online, you are right, I thought it was a death sentence for sure. I have so much more hope now. I just want to get diagnosed and start treatment. The waiting is torture on me and my partner.

    peace.

  • Re: Information for the CML Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    Once again we are getting many new members, and this posting can help them get started understanding this disease and avoid being overly scared by all those outdated internet websites.  Hope it helps.

  • Re: Information for the CML Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    Bumping up for reading by new folks.

    • Re: Information for the CML Newly Diagnosed
      dawnhan Registered Users
      Currently Being Moderated

      I was diagnosed with CML in 6/10, but didn't come across this website and group until 12/10.  Must say I've benefited more from reading everyone's contributions than from my doctors.  Trey, thanks for your postings.  I've learned a lot from them.

  • Re: Information for the CML Newly Diagnosed
    CallMeLucky Registered Users
    Currently Being Moderated

    Here's a good link for some very technical info on CML, from what I can tell it is very up to date.

     

    http://atlasgeneticsoncology.org/Anomalies/CML.html

  • Re: Information for the CML Newly Diagnosed
    cousineg Registered Users
    Currently Being Moderated

    You can obtain information at http://www.cmleukemia.com/

    If you're just diagnosed, go to http://www.cmleukemia.com/yoursquove-just-been-diagnosed.html

  • Re: Information for the CML Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    There appears to be a number of new participants who might benefit from reading this thread.

  • Re: Information for the CML Newly Diagnosed
    rayandcindy Registered Users
    Currently Being Moderated

    Trey--Thank you so much for the posting. The info is extremely helpful.  My dearest friend was diagnosed with CML a month ago. This discussion board is by far the best I have found to answer my questions.

     

    Cindy

  • Re: Information for the CML Newly Diagnosed
    Girla Registered Users
    Currently Being Moderated

    I would like some suggestions on how to read my blood reports, what I should look for, ask for, etc. My visits with my doctor go very quickly & half the time I cant remember what he said. So, for a newbie dxd CML person, what are the guidelines for all of this?On my last blood test, the abnormal levels were WBC 13.8, Platelets 1,041, and BASO 4.2. This is after being on 400 mg Gleevec for 11 days. I also take 2 meds for high blood pressure and on the cardiac side, have a left bundle branch block...which is a concern if I have to take Tasignia or Sprycell down the road. I'm not having Gleevec side effects but I do have a 2-3 hour spell of lightheadedness during the middle of most days. I take my Gleevec in late afternoon & BP meds (Toprol & Benicar) at night and morning. My dr. said that he might put me on additional meds if my platelets werent down this week.

  • Re: Information for the CML Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    Bumping this discussion up since we have another big influx of newly diagnosed people.

  • Re: Information for the CML Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    Bringing this post to the top for the new folks....

  • Re: Information for the CML Newly Diagnosed
    MDeRosia Registered Users
    Currently Being Moderated

    Trey - Thank you and thanks to evedyone contributing on this site.  I was diagnosed two weeks ago and will soon start on Tasigna.  I was scared, and alone until now.  Spent the night reading thei site and feeling like I was delivered a case of Strength and Hope.  Thank you !!!

  • Re: Information for the CML Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    Seems like a new batch of folks joining us might need to read this.....

    • Re: Information for the CML Newly Diagnosed
      matt92711 Registered Users
      Currently Being Moderated

      Trey and the rest,

       

      Just want to thank you all for the valuable information accumalated here. I was diagnosed with CML about 2 weeks ago and am now on Tasigna. The wealth of information here has really helped me understand much better what is going on in me and has given me the confidence that this thing is beatable.

       

      I am 31 years old, father of 3 wonderful children (ages 1 to almost 5!) and after learning about this from all of you here I know I will be around for them for a long time.

       

      Thanks,

      Matt

  • Re: Information for the CML Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    Info for the new batch of newly diagnosed.....

  • Re: Information for the CML Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    Bringing this up to the top again for those newly diagnosed with CML.  I updated the links in it as well. 

  • Re: Information for the CML Newly Diagnosed
    Rub43 Registered Users
    Currently Being Moderated

    Hi Trey. It was very nice to see this post after reading so many conflictive information in the Internet. I was just diagnosed last Friday and I have been so scared every time I read something in the Internet I end up crying uncontrollably. My family tells me to stop reading  but is difficult to do so. Today at work I when and google "cure for CML" and your wonderful review came out. I am so glad to hear that there is hope for me. I am not taking any medications yet as I am still waiting for the bone marrow results next Tuesday. I certainly hope I could fall in the 95% tile of the lucky ones. Thanks so much.

  • Re: Information for the CML Newly Diagnosed
    Sharon Registered Users
    Currently Being Moderated

    Brand newbie here!  Starting Sprycel when it arrives in a few days.  Wondering what experiences people have had on it. Can u help me here?  Not sure if one of the links at the beginning of thread has an answer or if u can lead me to a thread that does or can answer here

    Thanks All, Sharon