I was dx with CML after a routine bloodwork (now I realize is a common way to find out). When the oncologist/hematologist told me CML, he made it sound like it's not a big deal, just a cronic condition that is managed with a daily pill. He even said that many doctors in the field don't even consider CML to be leukemia/cancer. Ok, so after he tells me this, he hands my info on CML and all the literature he gave me refers to CML as cancer of the bone marrow and blood. Am I the first to hear this from a cancer dr? If CML is not cancer, why am I going to the hematology/bone marrow center every two weeks! My husband thinks he was just trying to keep us positive and lessen the blow of the news. Seems odd to me. Any way, I'm 40 yrs old and mother of 3 1/2 yr old b/g twins, who takes 600mg of Tasigna but doesn't really have leukemia. : ) I live north of Boston, MA and wondering if there are any other CML folks locally. I am curious to know what hosp/dr you recommend in the area. I am currently being seen at Beth Isreal Deaconess Medical Center. Thanks.
Dx with CML a month ago
Posted 21 July 2012 - 05:46 PM
Hi: First let me welcome you to the club that nobody wants to join as we say, but you came to the right place. You will start to understand this whole disease and even find comfort in knowing about how well these treatments are working for all of us. My second thing is that I always tell everyone to get a second opinion to confirm everything the first doctor has told you.
We have people on here from all over including your area I think. I myself live in N.J. My other advice is to be sure that the doctor you are seeing treats numerous cases of CML a year so you know that he or she knows what they are talking about. Saying its not even considered a cancer was probably not the right statement, but most doctors will tell you that if you had to get Leukemia that you got the best one. CML is very treatable.
Please post any questions you have so we can get to know you. We have some very knowledgeable people on here who will give you expert advice.
I was diagnosed in 1998, and there were no TKI drugs. I did not go on Gleevec until 2000, and I am still on the same dose all these years later. My Leukemia has been undetectable now for 9 years. Gleevec is made by the same drug company as Tasigna. Gleevec was the first and then other drugs were developed.
I will not go into a whole bunch of detail to confuse you. I will say that CML is not a death sentence which is what everyone fears. You will get to see your twins grow,and enjoy all the different aspects of their life.
The biggest thing everyone complains about is the side effects of their TKI drug, but every drug has some type of side effect. I have always felt that what I go through has been worth it. I was diagnosed the week before Christmas in 1998, and thought this is my last holiday with family. Now I will be celebrating Christmas #14 this year.
So glad you posted and joined us.
Posted 21 July 2012 - 07:15 PM
Thanks Marie: I do not know everything, like others do. I do not know how to break down every test with a explanation of why it is what it is. I know my basics, and for me thats good enough. The good thing is that everyone gets something out of what is posted, and they get the information they are seeking.
I think encouragement is the real key to keep people positive in fighting this disease. I can still remember when I was told I had LEUKEMIA, and my gosh back then it was really hard for me to comprehend that I had this disease. I had no group to go talk to at first. I did not even have a computer.
I hope your doing well, and so glad you got some encouragement from my post.
Posted 21 July 2012 - 08:38 PM
Susan - Thank you for the encouraging words. Glad to hear you are doing so well. I realize I have a lot to learn about this disease. One of the doctors did mention that I have the "good leukemia". I guess, things could be worse. The hardest part about all of this is that I don't feel sick. It's a strange concept to take medicine when you don't feel like you need it. I do realize the importance of taking the tki and have every intention of doing so. I will do any thing and everything to ensure I am around a long, long time for my family. I have always considered myself a healthy person, a diet full of fruits and veggies - hardly any meat, regular excerise. Just hard to believe I have CML. Before being diagnosed, I knew nothing about leukemia and now I want and need to know everything. From what I've been told and from speaking to my doc, he has several CML patients. He comes highly recommend from my pcp (who I love and completely trust) and a family friend who is a doctor locally. I trust their judgement but would be nice to get some feedback from others with CML. I am very blessed to have a wonderful husband and extended family but there is only so much that they can do and say. I feel so numb to all of this. I have yet to cry or get really upset. Don't get me wrong, I'm scared. I just don't know how to react. I guess, I'm more worried about not being worried. Does that even make any sense?
Posted 21 July 2012 - 10:51 PM
Hi Lee Lee,
Susan does a wonderful job of welcoming new people to our site. I have had cml 6 years. I was on Gleevac for over 3 years and I'm now on Sprycel. We all react differently to our dx. Just like you I had a routine blood test, and was dx with cml. The oncologists make it sound so matter of factly that we truly don't know how to respond. The shock of our dx, I think keeps us numb for a while. I don't know all the medical terms, and how to read test results, but a lot of people on this site can explain so much to you. We all tolerate the meds (tki,s) differently. Some people have no side effects, some have more bothersome s-e and have to change meds. My biggest complaint is fatigue. The board is usually kind of slow on weekends, but you'll soon be hearing from a lot of knowledgable people. Cml is a blood cancer, but due to the drugs available now it is completely controllable, as long as you take your medicine everyday. The best way I understand it is the tki kills the leukemic cells we have at first and then it keeps the new cells from reproducing. I'm so glad you found us, all your questions will be answered, but not by me in medical terms. This is a wonderful virtual family, we can talk about anything to each other, and we all have a sense of humor. It's a wonderful group and welcome to it. Sincerely Billie
Posted 21 July 2012 - 11:05 PM
Hi: Everything your saying makes sense. This is a very different type of cancer. I constantly have people telling me that I look good after all these years. People expect to see you looking like a lot of people do with different types of cancers, but this is not that type at all.
You feel confident in what your doctors are telling you, and that is so important. Just take one day at a time, and as you continue to see your doctors and get your blood tests just be sure to ask questions. That is how you will learn what is going on. I always write down any questions I have to take with me to my appointments. We have a tendency to go blank once we are in there for our exam. I also get a copy of anything I have done. I keep my own records at home, so I can refer to anything I want.
Great family with lots of support and love is another great thing. Your on your way to where you want to be.
You will have days where you cry just to release some tension from all your absorbing, or if you find yourself thinking too much about what will be. This is so normal also. Just try to stay positive that things will be okay.
We have some really great people here too, and they can make you laugh a lot too. Its not all depressing conversations. You will see how we share and feel for one another. We just live our life along with whatever else goes on. Enjoy the rest of your weekend with your family.
Posted 21 July 2012 - 11:50 PM
Hello, LeeLee: I was DX with CML 5 months ago, & have been on Gleevec for 4 months. Naturally, I was stunned, but I've tried very hard to maintain my composure - mostly for everyone else. I'm still trying to find time to pencil in my nervous breakdown.
My doctor told me I "hit the lottery", & I guess he's right in 2 respects: 1) CML is very rare, & 2) we're so lucky that they've found a treatment that's effective for most folks. Side effects from Gleevec are annoying for me, especially the swollen ankles (kankles) & some nausea, but it's better than the alternative!
I had a mild bout of depression a few weeks ago. During that time, I posted a question on this board, & got some very kind & helpful responses. It's amazing how just a few words from others in the same boat lifts the spirit.
BTW - the LLS has a weekly CML chat group that you may find interesting. Be sure to check our the support links on the web site. Good luck to you!
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Posted 22 July 2012 - 03:38 AM
Hi Lee Lee,
You have definitely come to the right place! My husband was dx 3 months ago. He takes 400mg of Gleevek and so far (knock on wood) has very few side effects. As Antilogical said, better than the alternative.
You mentioned you lived near Boston. We live in Canada, and we sought a second opinion at the Dana Farber Institute. I was extremely pleased with the service and have a friend that also lives in the area that is being treated there for her cervical cancer. My heart goes out to you, as the early days are really the hardest. Our lives, for the most part, have returned to normal, ableit a different normal.
Posted 22 July 2012 - 01:11 PM
Here is a summary about CML Leukemia for those who are newly diagnosed.
CML is very treatable now, but I agree that it is weird for an Onc to downplay CML, and even treat it as though it is not cancer. The "L" in CML means leukemia, and leukemia is blood cancer. You have many great options available for treatment in the Boston area. If it were me, I would find an Onc who cared enough to be open and honest with me.
Posted 23 July 2012 - 09:26 AM
Getting a cancer diagnosis is very traumatic so your response thus far is appropriate. Your Dr was trying to lessen the blow by saying it is not even really cancer. It is most definitely cancer and it is a very serious disease. If you had gotten diagnosed with this disease 15-20 years ago your doctor would not be so flippant about it. What has changed in the last decade or so is the fact that CML has been transformed from a terminal disease to a chronic condition for most people who get it. The majority do very well and studies indicate that a CML patient diagnosed today who responds well to treatment can expect to live their normal life span. So - learn what you can, but try not to obsess too much (although we all do), take your medication, talk to your doctor - if you feel uneasy about your treatment get a second opinion.
You have to start preparing yourself mentally for the marathon you have in front of you. This is not a sprint, it is not going to be over anytime soon, you will need to learn to live with this. For most of us, living with it isn't that bad, there could be much worse, but that is not to say it is not tough. You will likely find the mental side of it is much harder than the physical side of it. Physically most of us just roll with it and deal. The mental side can be challenging. It may be a good idea to consider speaking to a grief/trauma counselor for the next couple of months. Just to help you get through the initial period and understand all the emotions that come along with this type of challenge. It is normal to be scared and it may take weeks or months for you to fully come to terms with what has happened.
I can relate to your situation too, I was 37 when diagnosed two years ago, I have two little boys who are now 6 and 8. I was very scared at first. Today my CML is very much under control, my side effects are tolerable and I feel optimistic about the future. In the last two years I have seen life contiue on. I go to work, I go on vacations, I go to Cub Scout camp outs, little league games, I did not drop out of my masters program (almost done) and I have experienced other tragedy and loss in my family that make me realize that no matter what I am dealing with, life continues on.
Best of luck to you....
The journey of a thousand miles begins with one step. -Lao Tzu
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