New CML patients often ask "how can I get started understanding CML?" This is a compilation of information which may help the newly diagnosed CML patient understand the basics of CML leukemia. It pulls together some useful basic information and also references several links on the L&LS CML Forum and other websites which provide introductory information about CML.
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 This information may also help avoid the numerous out-of-date (and needlessly scary) websites that would only cause undue anxiety, which is what most people find when initially searching the internet for information about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.
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. 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 multiple drug choices - the survival rate is around 95%; much internet information is very out-of-date on this issue because of the recent and rapid advances in treating CML using 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, 4) most CML patients will live a normal lifespan.
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 overall the news is very positive.
The only clear risk factor for developing CML is age, but of course people of all ages can get CML. Direct external causes of CML except for very high dose radiation have not been established. People of all lifestyles, diet, vitamin intake, occupations, ethnicity, health status, sunlight or lack thereof, etc, etc, get CML in relatively the same statistical amounts.
Some reading resources:
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):
Information on Managing CML:
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.
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.
Other postings which the newly diagnosed CML patient would find useful:
Here is a blog I have put together discussing numerous CML related subjects listed A - Z:
CML Testing Introduction:
Genetics of CML Leukemia (Overview):
Edited by Trey, 03 August 2015 - 04:50 PM.