71 replies to this topic

[super99]

Hi, I'm 41 years old and a mom of two little girls. I have just been diagnosed with CML. My white blood cell (WBC) count was slightly elevated (11.7) and my family doctor sent me to another two blood works (results are 12.9 and 11.7).  I was sent to a Hematologist - they did another blood work. My WBC went down to 10.4, however, they found I'm positive for BCR-ABL. I did a bone marrow biopsy and the result is definitive for CML.  My doctor will start me on Sprycel 100 mg daily. As I am still in shock how could this happens to me, I am scared of how my body would react to the drugs and the side effects of taking it not only today but over years and years (hopefully).  Doctor said side effects are rash and swelling but I read that I could be very tired, too.  I'm worried about my daughters if something happens to me.  Can anyone share what the average survival rate after a patient with CML start taking drugs?   My doctor said I would live 10, 20, or 30 years from today but there is no cure for CML.  He said I can't stop taking drugs either as CML can come back.   Thank you so much.

[jrsboo]

Dear Super,

I know how scared you are.  I really do!  The good news is that you were caught very early (like I was) and that you are starting on a great drug that will keep your numbers in the normal range.  There is a TON of information for you to assimilate.  It will take you while to figure it all out, and what it means for you.  But this is the scariest stage.  It gets better from here.

Leukemia, at least our little version of it, is VASTLY different than it was 10 years ago.  For a tiny orphan disease, we have some of the MOST research going on on many different fronts, of all the blood disorders.

I too take sprycel.  There are those of us out here that have no side effects, others with mild side effects and some with more.  Every single person seems to react to them differently.  I hope that you are on the minimal side.

You WILL be around for your children.  You will just appreciate them more (smiles).  The latest research shows that our lifespans are the same as anyone without this disease. 

There will be bumps in your future.  But they are not insurmountable.  I think one of the hardest things is to come to grips with having heard a doctor tell you you have leukemia.  And having to be reminded every day as you take your pill that you have it.

There are so many wonderful caring people on this board, and I am sure they will all jump on and welcome you this fantastic club that no one wants to join. 

Hugs,

Caroline

[Susan61]

HI:  Firt let me say I am glad you joined us.  You will get a lot of support from people who know what you are dealing with.  You sound like you have a good doctor who got right to the bottom of why your counts were elevated.  Finding the CML early is a great start.  My doctor found mine very early also, and that was almost 14 years ago.  That might help to answer your question as to  your longevity.  CML is not curable without getting a bone marrow transplant, but they do not jump to that extreme anymore  Since the invention of these TKI drugs, they can stop the CML in its tracks to give you a long life.  IT does have its side effects.  I am on Gleevec for 11 years, and I have a lot of side effects with my TKI.

Sprycel has its own, but you have to remember that everyone's body is different in how they react to these drugs.  You might not get what someone else gets.  Try not to wait for something to happen, because it may never appear.

      You will have a lot of questions as you go along, and just come here to ask anything.  You will get to know everyone.  We are all very supportive, and you will see some of the questions that pop up. 

     You will get to see your daughters grow up, and be a part of their lives for a long time. 

Susan

[Marnie]

Hi, Super. . .welcome to the club, and sorry that you had to join!  I'm 48 and on 100 mg Sprycel.  When I switched from Gleevec to Sprycel, I had headaches for a couple of weeks, so if you get them, don't worry about it. . .they will subside.  Fatigue is a side effect that most of us experience, but I continue to be active with motorcycling, kayaking, snowboarding, and teaching middle school.  I guarantee that your two girls will wear you out far less than a classroom full of 11 and 12-year-olds! 

It will take awhile for you to settle into your "new" normal, but your life will continue pretty much the same as it has been.  Believe it or not, you will get to a point where you actually forget that you have cml.  Right now it is probably encompassing every second of your thoughts.  Luckily for us all, cml research and treatment has turned the disease from a death sentence into a chronic illness that can be managed. 

Best of luck, and be sure to come to this forum for questions and support.  There are a lot of fantastic people here.

Marnie

[Lizzybee]

I was diagnosed less than a year ago with WBC of 317k at a "routine" physical, so I know how overwhelming it is.  But hang in there, a year from now, CML will not occupy your every thought.  The drugs we take haven't been around long enough to have long term studies, but the survival rate at 5 years and 8 years is 90-95%, so we have a very, very good prognosis.  CML specialists are tentatively beginning to estimate that the average life span of CML patients on a TKI may reach 30 years.  My oncologist believes that a cure is not far off, and then most of us will not have to take medicine for the rest of our lives.  You're fortunate to be diagnosed so early.

[cleocans]

Hello Super,

      I am a 39 year old mom of two girls, 11 and 9 years  old.  I was diagnosed almost a year ago.  My wbc count at diagnosis was 280,000. There are lots of people here with a lot more knowledge than me.  I am learning more with every question someone asks!  I can tell you about my experience with Sprycel since I am on Sprycel 100mg.  I had the headaches when I started Sprycel.  Mine lasted about 4 days.  Other side effects I experienced are bone pain and water retention.  The bone pain has pretty much disappeared.  But I do have to take a diuretic to control my water retention.  If I don't get enough sleep (8 hrs for me) I will feel fatigued the next day.  Like Susan said we will get to see our daughters grow up.  My oldest just graduated from elementary school!  We will be starting a whole new journey as she heads to middle school!

Kim

[OhRose]

I also am relatively new to CML, ( 6 months) am 69, and I take Sprycel. There is a lot of info on this site and I am grateful to all who contribute. I must also say, it has scared me almost as much as helped me to read some of these responses. I have come to understand it more now and most of the fear is in control. We are all different and we react to meds differently as well. So, it is your own story which will be created in the next years with CML. I believe you will be around for your children. The name of this disease carries a lot of fear but as has been said, soooo much has been developed and this kind of leukemia is controllable. I have side effects but none that are not manageable. There is a tired thing but with kids you will stay active and that is good for you.  Just rest when they do and maybe don't feel you have to do everything the way you did before. It also will give you something else to think about and that is a really good thing too. It is not good to make your disease the only thing in your life. Of course, it is important to educate yourself, and you will absorb info as you read on this site and relax a bit and get over the shock,  but it is important to go on living too esp for your children. I pray for you and all who share our journey.

[Trey]

Read this first:

http://community.lls.org/docs/DOC-1271

Then look at these for reference:

http://community.lls...ttype[document]

[super99]

Hi Caroline/Jrsboo,

Thank you so much for sharing your experience and the info. about CML with me.  As much as I'm overwhelmed with the diagnosis and the anticipation of my future, I'm so grateful I get to know you and other wonderful, caring, and supportive people from this board.  Yes, one of the hardest things was when the doctor told me I have leukemia. And then learning from him that CML is not curable and I have to take medication for the rest of my life was one of the worst.  I was in shock for the rest of the day and didn't remember how many times I cried. I took it pretty hard and my kids were so scared to see me that way.  When I saw my kids were falling apart, I told my kids we're going to fight for this together. It isn't going to be easy but we will try our best to make it through. I'm trying to be positive and go back to my normal life before 2 weeks ago, but it isn't easy.  I have good and bad days and can get emotional even on the good ones.  I hope it gets better like you told me.

Again, thank you for making me feel welcome to this fantastic club.

Best,

[super99]

Hi Susan61,

I've already received a lot of support from wonderful people from this board within a short time. Yes, I am fortunate to have a very attentive doctor who wanted to find the cause of my slightly elevated WBC and sent me to see the Hematologist.  I'm also glad to hear some TKI drugs can stop the CML in its tracks. But why can't we stop taking drugs?  This is what I don't understand. 

Thank you again for letting me know I will get to see my daughters grow up and be part of their lives for a long time.

Best,

[super99]

Hi Marnie,

Thank you for making me feel welcome. Did you take a pain killer when you had headaches?    Wow, you have a lot of energy. 

It's probably going to take me a while to forget that  I have CML.

Again, thank you so much for your support.

[super99]

Hi Kim/cleocans,

My daughters are 8 and 6 years old. I was also concerned about the bone pain, too. Were you able to take a pain killer or you just wait until the pain subsides?  I'm glad you told me about getting enough sleep. I haven't been able to do that and will need to start doing so.   Thank you for sharing this with me.  I hope you're ready for your daughter to start middle school!

[super99]

Hi OhRose,

Thank you for sharing your experience for CML with me.   I like that you suggest it isn't good to make my disease the only thing in my life.  I will try to educate myself from this supportive group of wonderful people.  You will be in my prayers, too.

Best of luck,

[super99]

Trey,

Thank you for posting the links, they are very helpful. 

[jrsboo]

Dear Super,

The simplest of explanations for why we take the drug for so long:  At some point, one of your T-cells divided incorrectly and two of the chromosomes swapped out some parts of themselves (the 9 and 22), and now your body has a weird T-cell that produces a new protein that normally you would not have floating around.  When that protein reaches the bone marrow, it tells the bone marrow to start producing white cells like there is no tomorrow, so they start being produced by the millions.  The big problem is that they are not normal white cells and they crowd out all the good regular cells.  The drugs, called Tyrosine Kinase Inhibitors (TKI), are like a lock into a key.  While the bad protein is floating around, the TKI attaches to the protein, and renders it unable to "talk" to your bone marrow.  So your bone marrow doesn't make all the weird white blood cells. 

But your T-cell has made daughter cells that look just like it, producing the bad protein.  Then your t-cell goes to sleep.  And so far they haven't found a way to kill off the t-cells and daughter cells and stop your body from producing the bad protein.  Thus the need to stay on the drugs.

Please read through Trey's links, he is our resident information guru.  It will make my next paragraph make sense!

The best news is that they are starting to realize that if you get your numbers down quickly and stay there, after you have been "undetectable" for two years you may be able to get your oncologist to lower your dose, or perhaps stop.  They are beginning to start some trials about that here in the states.  They have done these trials in Europe, and while there is a high relapse rate, the good news is that you don't develop a resistance to the drugs in the interim so if you do relapse, you can go back on the drug that worked for you.

But all of that is in the future.  Right now you should concentrate on getting through the adjustment period and learning as much as you can about the disease.  Knowledge is Power.  And you should understand everything your team is doing for you so you can make informed decisions.

You may experience some of the fatigue and other side effects, but they are manageable.  For the pain, if you get some, you just take some ibuprofen (sprycel doesn't like Tylenol if I remember correctly), and if that doesn't work, you can ask your onc for some stronger meds.  I never got the headaches at all.  But I do get some other side effects. 

Be patient with yourself, this is a huge adjustment.  You will understand more as time goes by, and you will eventually have some peace back.  There are silver linings to this, you may not be able to see them for a month or so, but they are there.

Also,  you are no longer allowed to have grapefruit.  Sigh.  I love grapefruit and miss it.

Hugs,

Caroline

[cousineg]

HI Super,

     

If you've just been diagnosed, I suggest you to meet the nurse Carolyn Blasdel .

 

I suppose that you love painting. Take a break of reading medical topics and go to that link: CMLer's portofolio

 

But If you like more music, then go to:

  The march toward healing

  Too much angels in heaven!

  The battle for healing

   Dia international de la LMC (Spanish music)

 

Welcome to the group,

                               Gilles

[Marnie]

I believe that if you are on Gleevec than you can take ibuprofin, but no tylenol.  If you are on Sprycel, no ibuprofin but tylenol is o.k.  I forget, so I try not to take any OTC pain meds.  Probably, as long as used sparingly, they can be used, but not on a continual basis. Don't quote me on this because I could be totally confused.  Check with your doctor.  You can also use drugs.com as a resource, though my PCP uses a different reference.

Marnie

[pammartin]

Hi,

Welcome to the group.  I haven' read through the other posts yet, but I have to admit there was one thing I noticed on your post concerning a comment from your doctor.  If you do not take the drug the CML will 'come back'.  I know next to nothing about CML, jus diagnosed last year, but I do know it does not 'go away'.  Even if this was a euphemism it still provides an incorrect idea of how the TKI's and CML works.  To make CML go away, a transplant is the only option, but most on here will say the meds are the better choice.  We are all thankful the transplant option is out there, but the meds will control the CML and keep it at bay. 

All the drugs have some side effects, each is different for the person and although we all try to give advice we always add the disclaimer each person may not have the same side effects we experienced.  One thing I can tell you is, we are all here to support you and hopefully make you laugh every now and then.  There is no subject that is taboo, and we talk about everything from bathroom issues to how angry we get sometimes, and everything in between.   Please keep posting, asking questions, and adding comments, we are not doctors, but we do all have the disease, and in my opinion no one can understand how it feels except for others who unfortunately have the same diagnosis.  I see Trey has provided links, they are great, lots of info though, so be careful you don't over load.  The one thing I have not done in the past I have started to add is; be careful where you look for information with this disease, although there are many credible sights, there are also many sites that are not credible and they either scare the beheck out of a person or provide what seems hopeless situations.  Please look for info that you can trust, and never compare your situation to anyone else, you are unique, and although we all have similar issues, there is not one of us that have exactly the same situation, this includes those side effects, test results, response, and a host of other issues.  We are all listening and ready to support in any way we can.  Best of luck!!  Nice to meet you.

Pam

[CallMeLucky]

Hi - the diagnosis is one of the hardest parts, it is very traumatic and you should consider talking to someone like a therapist for the short term to help you reconcile what is going on.  Over time you will see that things will likely be alright, yes you may be a bit tired but it shouldn't stop you from doing the things you need to do, if it does there are other drugs that work just as good and may not make you as tired, you just have to see how it goes for you.

I understand the position you are in very well, I am 39 years old, I have two boys 6 and 8.  I was diagnosed 2 years ago.  I can tell you that while there are always going to be challenges, from the outside looking in, you wouldn't know I had anything wrong with me.  I don't tell a lot of people about my illness and when i do they are always surprised.  I still work full time, I go to school at night, I am swamped with kids activities (I am the den leader for my kid's cub scout pack) and then there are all the other everyday things like mowing the lawn, going on vacations, etc.  I am going camping this weekend with the scouts (this is supposed to be my father's day gift, but for some reason it seems like it is more for them, lol).  I am going to Disney this summer where our schedule is jammed for the entire week.  I am telling you this because I want you to know that life goes on and we continue to do the same things.  Yes I may get run down sometimes and I will remember that I have to manage my time a bit better, I have to wear a lot of sun block because I take Gleevec and it makes you sensitive to the sun.  I get muscle aches and the anxiety is always there.  But overall it's ok and it will be ok for you too.  We are fortunate to have the treatment options we have.  It does suck we have to stay on it indefinitely but we know many other illnesses do not have the good fortunate we do.  So we pull ourselves up and keep going.  Some days will be harder and that is ok, but in the aggregate, your life will still be a good one and there is every reason to expect you will be around for many years for your children.  I expect to see my kids grow up; sure I have doubts some days but for the most part I believe I will be here for a long time.  You should be too.

Best of luck.....

[Susan61]

Hi:  I do not want to confuse you, but let me just explain it as simple as I can.  Years ago there were no TKI drugs for us to take.  Like when I was diagnosed in 1998, all they could offer me was giving myself injections everyday of a drug called Interferon.  IT did not work for me, and was destroying my liver.  I had to wait for 2 years before the first TKI drug which was Gleevec was in trial in New York.  In the meantime, I saw numerous doctors for second and third opinions.  They all wanted to do a bone marrow transplant on me.  I had no match, and I decided to wait it out for my decision as to what I should do.  Then I heard about theclinical trial, and was able to get into it.  I went back and forth to NY for  7 months until the FDA approved the Gleevec for doctors to be able to prescribe it.  After the Gleevec, then Sprycel, Tasigna, and other treatments came along.  You are fortunate in the fact that if your drug of choice right now was not to work for you that you would be able to switch to one of the other drugs. I did not have that choice when I started.  Thank God the Gleevec worked for me, and I have been on it for 11 years.  I do have a lot of side effects, but a doctor told me that if I had gone for the transplant that I probably would not be here now.  There is so much to learn, and I do not want to overwhelm you.

     You asked why you have to keep taking the drugs.  ITs not like taking a Antibiotic where you kill the germs, and they are gone.  With CML these drugs are killing off the cancer cells to the point where they will not even be detectable by a blood test.  The problem is these drugs do not kill the root of the disease.  The way I explain it, is that you can use a weed killer on weeds, and they die off.  Stop using the weed killer and more weeds pop up, because your not kiling the root of the weeds that are growing .  They are still under the ground to multiply again.  That is how CML works.  That is what all these doctors in research are trying to do now.  They are looking for something that will kill the root so it does not come back if we were to stop taking our TKI drug.  So we take our medication everyday, and do the best we can until something better is available.

    Its so hard in the beginning, and so many thoughts go through your head.  As you go along, and you see how well your doing on the TKI you become Thankful that you had this choice to fight your CML.  Take one day at a time, and just enjoy your daughters and everything else you want to do.  After awhile, it actually becomes the normal for a lot of us. I did not mean to go into detail, but I can tell your scared and not really understanding it all.

   We have some great knowledgeable people on here who are always available to go into more detail for anything you want to know.  We rely on Trey for many of our answers.  He is great, and you will get to know him.

   I hope this helped a little bit to clear up some of your questions.  Just Ask Away Anytime.

Susan