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 This information may also help avoid the numerous out-of-date (and needlessly scary) websites that would only cause undue anxiety, which is what most people find when initially searching the internet for information about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...”
A recent article declared that CML patients have achieved a life expectancy similar to the normal overall population because of these drugs:
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."
News articles about how CML has become a very survivable disease:
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:
Information from leading CML specialist Dr Brian Druker:
(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:
Video Presentations on CML and Treatment:
Here is an article which outlines the history of how Gleevec changed the treatment of CML (somewhat long but a good read):
Time Magazine article from when Gleevec was first approved in 2001:
The Leukemia & Lymphoma Society has a live person help line available to answer questions about CML:
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.
Here is information that might be useful right away regarding CML by popular topics:
Here is a blog I have put together discussing numerous CML related subjects listed A - Z:
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.
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.
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.
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
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.
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
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.
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.
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
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.
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.
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.
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.
Hi Dawn: I live in New Jersey too, and I can surely understand you wanting to move. Just the expenses here, let alone our medications makes it hard to survive. I know exactly what you are saying. I wish you well on whatever decisions you make, and hope you do not lose any money in the process.
Right now we are staying in NJ at our age and just trying to make it.
Gleevec is indeed a drug for life. At present the idea is that as long as it works and you tolerate it you keep taking it until they find a cure or until you get hit by a bus.
There are some trials out there at present where people with long standing excellent response have stopped Gleevec entirely or replaced it with low dose interferon, but a large proportion of people on these trials quickly lose response and have to go back on the G and the jury is still out on whether the others are stable or just taking longer to relapse.
The good news is that for most people the Gleevec side effects seem to get better with time.
All the best
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.
Here's a good link for some very technical info on CML, from what I can tell it is very up to date.
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.
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.
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.
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
Here is an overview of Sprycel and Tasigna:
There are many discussions about Sprycel on here over the years. You can use the search tool at the top right hand corner, but here are a couple:
You should be prepared that Sprycel can have some short term but strong side effects for a week or so, including headaches and body pain. These will usually resolve or diminish significantly rather quickly for most, so don't be surprised if that happens.
You might want to start a new post or add to existing Sprycel posts after you start the drug. Hope it goes smoothly.
Welcome to the group, please let us know how you are doing and if you have any questions, please ask. There are many knowledgeable people here and a boat load of experience spanning over a decade with the disease. As Trey noted, Sprycel can have several nasties in the beginning; nice part about it is they usually do not last over a long period of time. On the other end of the slide there are many who have said they did not have many side effects at all, short or long term. Best of luck and when you have time, let us know how you are doing.