26 replies to this topic

[busdriver]

I find out on Wednesday if I have Leukemia.  My WBC is 29,500 and I am showing myeloids on my differential.  I am super tired and my spleen is slightly enlarged ( 13.1)  I had some extra blood work and a bone marrow biopsy.  They also found that I am anemic.  When I read about the phases of CML it says you are in the Chronic phase for 9.5 yrs and the Accelerated phase for 1.5 years and the Blastic phase for 3-6 months, then you go into Acute Leukemia.  Does that mean I may only live for 10-15 years?  I really want to know.  I have a 4 year old and as a Mother I need to know if this is what happens. 

[prljm10us]

wow i don't know where your getting your information but i'd try a new place. 20 years ago you probably would have expired in 5-10 years but now with the new medications like gleevec,sprycel,tasigna and others that keep leukemia in check, as far as i know there are no time limits on what phase you'll be in. trey will be along shortly and can give you much better facts than i can. but know there is no expiration date stamped on you anywhere and with these wonderful drugs nowadays and stem cell research they might even cure it in our lifetime. i was dx 1/2006 my wbc was 360,000 ive been through all 3 meds mentioned above and im currently in remission and have been for 3+ years. this is a great place to get support or just pour your heart out to someone believe me ive done it many times, there's alot of great people here!!! good luck and i hope everything works out great for you.

[MomMom]

Good morning, Busdriver,

I am MomMom (Kay) and I am so sorry that you have CML.  This is a good place to learn more, ask anything you want to, get encouragement, and vent if you need to.  I am a 61 year old wife, mother of 3 and grandmother of 7 and was diagnosed July 2008 in chronic stage and still there.  Gleevec has proven to be a life saver for me inspite of the side effects. I am still working full time and have lots of plans for the future.  My doctor has not said anything about a time line for living and by all accounts as long as you can stay in chronic stage you can live a relatively good long life. Don't read anything that is over two years old about CML and/or longevity with it.  Our friend and forum buddy Susan61 will pick up on your post and she has known she had CML since 1998. She is our hero for CML here, and still in chronic stage.

This is a scary time for you.  I remember when I was first diagnosed that it was a shocker as it is for everyone.  Scared the toot-toot out of me. I came to this site and it really helped me cope.

Good luck with the med they will give you and keep coming back with your questions and update us on how you are doing. If anything changes please tell us so we can be of support.  Hug your daughter for a granny.

Kay

[busdriver]

Thank you for your responses.  I am very happy to hear of the long remissions.  I will let you know what my doctor tells me on Wednesday afternoon.  God Bless both of you and your families.

[Tedsey]

Hello. I am a mother of a 1 and 3 year old.  I was diagnosed this past Nov.  I can feel for you.  It is very scary, most especially for a mother of young children.  Almost 4 months later, things are beginning to calm down emotionally.  It seems like the end of the world, but there is a lot of hope.  Here to support you.  I wish you the best of response with the drug therapy.  It works for most!  That is good news!

[busdriver]

Thank you for your support.  I was wondering if you are on Gleevac and how that affects your household with 2 little ones.  How are you feeling? 

[prljm10us]

.Gleevec has the most side effects. I experienced memory loss, weight gain,lots of bathroom visit's, stomach cramps( sometimes very bad) also my eye lid and under my eyes were sunken and pale white and I was very fatigued. But ill take that any-day over the alternative. as far as kids go just dont let them touch the gleevec and everything will be fine. again good luck

[Susan61]

Hi Busdriver:  Oh I am so sorry that you got wrong information from wherever you got it.  I was diagnosed in 1998, and still on my Gleevec with no Bone Marrow Transplant.  There is so much known about treating CML now, then years ago.  It has become a chronic disease like someone having Diabetes.  It is so treatable.  They keep coming up with new medications in case one does not work.  Plan on being around for a very long time.

     We are all here to help each other.  You may get side effects you want to discuss with us after you start some type of treatment.  Just write anytime, and somebody will answer your question.

     I am sure all the other answers you got have made you relax a little bit.  Hope we hear from you after your visit on Wednesday.

Susan

[hannibellemo]

Hi, busdriver,

It may be more accurate to say that side effects are dependent upon the individual; many people have very few side effects on Gleevec. Just know that there is a wealth of information on this discussion board from people who have lived very full lives with this disease for many years. I think it is safe to say that you have an excellent chance of living to see your grandchildren!

Good luck and let us know how your appointment goes.

Pat

[Tedsey]

First of all, I usually feel physically fine.  However, I was up most of the night with a sick toddler, so I am a little tired today. LOL   I have found the only time I feel tired is when my red blood counts are low.  Other than that, I feel normal.  I got the usual side-effects in the beginning (puffy eyes, cramping, little bone pain, quick headaches & nausea).  However, after about a month they all went away.  

I keep the Gleevec and all meds above stove (we have a cabinet there) it is harder for my toddler to get to.  But I would consider complicated baby locks, even if your son is 4.  Talking to him about the dangers of medicine, which I am sure you have, is also a good idea.  My son appears to understand, but even the best trained toddler can give in to impulse!  This can go on until they reach 6+ (told this by poison control center doc).  Gleevec is a chemo drug, but it is just as toxic as any drug/chemical a toddler can get his or her hands on.  Just gotta be an attentive parent.  That's what I try to practice.

I have been off Gleevec twice since diagnosis in Nov.  I am still off now going on 17 days.  Just in this past week, I have started to feel the side effects again (but minimal).  Some people have to go off and on Gleevec.  It all depends how your body reacts to it.

Most people do extremely well on this drug.  And for those who have trouble with it, there are 2 others and more on the way!

P.S. I had a lot of psychosomatic issues in the beginning, (ex. these were physical problems caused by extreme anxiety and depression at the shock of diagnosis).  If you find that you have many side effects, give the G time.  Maybe try to see a cognitive behavioral therapist to sort it out too.  Everyone handles crushing news like CML differently.

Good luck.  Hope you have an easy time on Gleevec.  After about 8 weeks, things should settle down a bit.  They did for me.  All my best to you.                                               

[busdriver]

Thank you so much for your support and encouragement.  I have had an upper respiratory infection since Thurs.  I went to an Urgent Care place on Sat. morn. and got some Amoxicillian and Flonase.  I thought I was getting better, but last night I had a fever and real bad chills.  It seems like this time I am extra sick.  Does this have to do with my possible CML?  I also have loose stool for a couple of weeks, now its just getting worse.  Does the doctor have to treat infections any different, now? 

[Coop]

Im now five and a half years into CML.....going good, but drug side effects are a part of life for most of us here. Stay with this board my friend there are many great folks here.  An old rancher client of mine whom has CLL told me years ago...."you might not believe me right now my friend, but this here cancer can change your life for the better if you let it" Welcome aboard. and don't trust internet research too much cuz there is a lot of old and false info. but the folks here are living it

cheers, Jeff

[MomMom]

Your gastro issues with loose stool may be increased wtih the Amox. you are taking.  Try eating some yogurt and make sure it has active yeast culture labeled including L-acidophilus.  We gals need that anyway when taking an antibiotic. So, it can't hurt and might help.   Sorry you're feeling so lousy.  We have had what I call the old time flu in my area of the country lately.

The only thing my doc/hema/onc told me was to call if I had a temp of 100 or more.  He treats every ailment I get except a runny nose and probably would do that too.  Hang in there.  We're here for you.

Kay

[Trey]

Here is some info for those newly diagnosed with CML leukemia:

http://community.lls.org/thread/2600?tstart=0

[Gayle]

Busdriver,

I am a 33 year old mother of four (ages 16, 13, 10 & 7) dx in Jan.  I don't live too far from you either!   It is quite an adjustment when starting the meds, my first 8 weeks were terrible.  I seemed to have extreme bone pain, and could track where my Bone Marrow was being worked the most!  Sternum pain was the worst!!  However after several posts on here, I came to realize we all take to this med differently!  My hair thinned, could be due to nutrition as well though.  Keep yourself healthy, body and mind!  It will help that your son is young and you will be more educated to explain to him someday what Leukemia is.  My children are learning with me and that scares all of us!!  I am still going through some nasty stuff, they are testing me for GI problems, as I have lost A LOT of weight since starting G...although through it all...considering the alternative it is doable!

I will keep you in my prayers!  May God bless you through all of this!

Gayle

[helenet]

Hi Tedsey--

not sure it is a good idea to keep you meds above the stove.  there is a certain temperature that Gleevec needs to stay at!

[Tedsey]

I got pneumonia after I started Gleevec.  I was in the hospital 5 days prior for CML diagnosis, so it is very possible I picked it up there.  Although, from what I have read here, G should not interfere too much with your immune system (but it can for some people--like me), stress can also lower your immunity.  You could have a regular cold or flu (like MomMom says--she is a better source than I).  My doc says watch for temp. 100.5 F (38.06 C) or higher.  Call your onc if this happens.  Hope you get well soon!

P.S.  Your absolute neutrophil count (ANC is a gauge for how your immune system is doing).  Granulocyte is another word for neutrophil (a type of white blood cell).  Get copies of all your blood tests and metabolic panels.  An ANC (absolute neutrophil count) should be 1.5 for us CMLers or higher--says my onc, but your lab may have different ranges of low or high average, so make sure you get these ranges).  If yours is low, you may have be careful (wash your hands and don't touch your face, keep away from large crowds and kids, that kind of thing).  Nevertheless, when I got pneumonia, my neutrophils were in average range.

I am sure Trey sent you this already.  It has really helped me http://treyscml.blogspot.com/

Keep posting how you are doing.  I am sending good vibes your way!

[busdriver]

Happy Easter, my new friends.  I was in the hospital for a few days on iv antibiotics.  I am still not well.  I started my Gleevec 3 days ago.  How long does it usually take before I might feel side effects?  I know everyone's different, but just waiting for the ball to drop.  I am soooo scared.  I just can't kick this infection.  Oh, and I must know, does anyone feel super short of breath?  I feel like I must take short rapid breaths.  Is this and my low grade fever possibly from the CML not the infection?

[CheriMS]

Hey there Busdriver,

I'm sorry you're having such a hard time right now.  It sucks and I'm sure it's extremely stressful.  Whenever I started G, I had symptoms just a few minutes after taking it.  Lets just say, my grapes didn't make it to my belly. It really didn't take me long to start feeling the fatigue, less then three months, maybe.  I'm starting to get the "chemo brain" as some like to call it, pretty often lately, and I've been on G for about a year now.  I can't really answer you're other questions, but I'm sure Trey will come up with something for you..  Get to feeling better!

Cheri!

[busdriver]

Hi Cheri

Thank you for your response.  I have that brain, too, but I call it "Mommy brain" now I guess I can call it " Chemo brain"!  lol, I have to laugh so I don't cry.  My husband is just not acting like he gives a crap.  I really need him to talk to me.  Thanks, again, Beth