11 replies to this topic

[luvmybees24]

Hello everyone! I was diagnosed on 11/14/11 with CML. I am in the chronic phase and had no symptoms other than my WBC was high in a routine blood test. I had a bone marrow aspiration (and it STILL HURTS ) and am on Tasigna. I am just scared I will not live a normal life span. I guess I am looking for others experiences with living with this disease. I feel fine and it scares me that I have something that could kill me. I am only 34 years old.

Laura.

[random]

Hello!

First of all, sit down and relax.

Second, start reading Trey's blog, you'll find important infos: http://treyscml.blogspot.com/

[CallMeLucky]

Hi Laura - I was diagnosed about 1.5 years ago, I was 37 at the time.  It can be scary at first but you will learn that most people with CML are ok. 

In addition to the link to Trey's blog whcih has a lot of info, take a look at this article

http://www.medpageto.../Leukemia/25534

The title is Imatinib normalizes life expectancy in CML.  Imatinib is Gleevec, which was the first TKI drug to treat CML, Tasigna is a second generation drug to Gleevec and appears to work even better.

There is a lot going on with CML today you have every right to be upset, but know that this will most likely not shorten your life.

I would also suggest checking out this video

http://www.patientpo...arch?autoplay=1

[Judy2]

Hi Laura. First, I am glad you have joined our group. I was dx in May and I still am anxious about it but know that you are not in this alone. You will find everyone on this site is very supportive, I'm new at this whole CML thing, also, so I don't have  much info. to add except to say that everyone says we will live a normal life span, and also a quality life. I don't know where you live but we are thinking of starting a support group for people in the Boston area. I'm glad you decided to post and remember we are all here for you.

Judy

[Dina]

Hi Laura,

I was dx three months ago at age 36 and taking Tasigna for two months now.

You must be very scared right now, but with today's CML drugs we have every reason to be very positive

about our future.

I would like to share this video with you.

http://www.youtube.c...h?v=muiPllp_JvY

Dina

[mikefromillinois]

Hi Laura,

Welcome to the CML club.  The first few months are a little scary but the more you learn the more comfortable you will become.  Try not to worry too much.  It will get better.  Also beware of other info on the Internet about CML - some of the info out there is no longer accurate.  You will find this Board to be a great source of information and support.  Don't hesitate to ask questions here.  Also, it's good to make notes along the way so when you see your doctor you can have all your questions ready.  You are among friends here...

Wishing you good health and many happy days...and a Happy Thanksgiving.

Mike

[scuba]

Laura,

As odd as it may sound - CML may actually lengthen your life.  First the disease is very much better understood with good treatments now - more chronic than anything else.  There may be bumps along the way, but in the end after 8, 12, 18 months your blood cancer levels will go way down and may even disappear - below detection.  And you will be taking regular blood samples every 3 months down the road that will monitor all sorts of things that you would not normally have checked regularly.  Any other disease (blood pressure, Liver, kidney and other functions, metabolic panel, etc.) may get spotted sooner so you can correct it before it becomes deadly.  So CML, in some sense, has made you more aware.  Who would normally have blood tests every 3 months !!  Get ready to be a pin cushion.  Vampires take less blood.

Side affects of the drugs are an issue, but they are finding that high doses may not be necessary to keep CML in check.  And there is a lot of progress being made in search of a permanent remission without taking a drug (i.e. getting the body to recognize and keep CML in check).

You're fortunate you found CML routinely.  You may have caught it early and that helps in the treatment profile.

You're gonna be fine.

[PhilB]

Hi Laura,

I think all of us can remember exactly how we felt when we were at your stage.  It is indeed evry scary and takes time to come to terms with, but it does get better mentally / emotionally (apart from waiting for results of course) and the statistics show that the very great majority of us will do just fine.

I have bumped one of Trey's uber-posts for newly diagnosed patients to the front page.  It makes a great place to start your journey to becoming a keen amateur haemetologist!

Phil

[ritan/]

hugs and welcome. (wish neither of us had to be here )

luckily, today CML is something you'll live with not die from! i started my journy just a couple months earlier than you... dx Sept 7.

[grannyd]

Welcome to our club, sorry you had to join but---this is the best place to find great info on CML!!!! Everyone here has been where you are, first being told that we have CML. It is scary to hear & seems like your whole world has been turned upside down. It does get better with time, as you will find once you you start reading post on this board. Everyone here is so willing to help with all your questions & fears. I too was started on Tasigna & I have had great results. The side effects is different for everyone & fatigue is the biggest for me, I just turned 60 last week!!! Maybe it is old age--ya think???? Anyway, please come to this site & read Trey's posts---he is our go to guy--I swear he has a degree in CML!!!! Or just vent anything you want to, we are all here for you!!! Prayers to all, granny d

[Skittles]

Laura, you've made a positive move in joining this group.  Lucky,Random and Grannyd are right, follow Trey's post. He is our CML Geek and is just amazing with all he offers us but there are others on the group that add so much valuable input as well.  Keep a copy of all of your lab and pathology reports and know that there will come a day that CML will not be the first thing you think of everyday.  I know, hard to believe but it is true!  I have had CML for 3 years this coming Feb and I never thought I would have a day CML wasn't on my mind but it did happen.  What you are feeling is completely normal and we have all felt that way until our 'new normal life' kicked in and we'd had several good lab reports.  You will be fine and live a normal life span thanks to all of the miraculous things being done for CML today.  Try to enjoy Thanksgiving knowing things are going to get better.  Hugs to you, Skittles

[Happycat]

Hi, Laura,

Welcome to the club no one wants to join!  It is at least informative and fun. And the people here can tell you more about the side effects of the drugs than most oncs can.  If you've got a question, it's probably been asked before, so try a search.  If you do not get anything, just ask.  Someone will know.  And there are even plenty of people who can interpret lab results and reports if you need it.

Anyway, Gleevec and tkis revolutionized cancer treatment.  We are fortunate to experience the benefits of those who researched and brought these amazing drugs to market.  Your chances of living a nice long life are really quite good.

You have plenty to be thankful for this Thanksgiving.  Try not to worry. 

Warm hugs,

Traci