13 replies to this topic

[Jamie2015]

Typical routine blood work for well woman exam decided to surprise me.  Blood platelets were high.  Thinking nothing of it (as my OB told me platelets can go up whenever your body has a cold.)  I soon found out I was pregnant.  Through my pregnancy my Blood platelets stay high but no other signs were concerning.  I DID DELIVER A BEAUTIFUL BABY GIRL..and HEALTHY I might add:) (blessing for sure)  After my daughter was born, my Hematologist decided to do a bone marrow to just rule everything out and cover all basis.  Everything came back normal... except high blood platelets.  I was referred to a specialist because due to my age, 23, my doctor wanted a specialist to look at me before just blaming platelet count on Essential Thrombocytosis..Excuse me if I butchered that.  He then found I have CML -.-  I am sure you can imagine my surprise when I go from thinking I just have high blood counts to having the "c" word.  I am still in shock and saddened by this new.  I will begin sprycel 100 mg as soon as my insurance approves it.  Questions for those on it:  When is the best time to take this?  Take on a full stomach?  Take on empty stomach?  Take before bed? 

 

But the biggest question is how to accept this -.-  I am thankful that I can take a pill that in essence will help control this.  You never expect it to be 'you'

 

I am thankful for all of these blogs   Many give me hope.  I am excited to be apart of this, and look forward to any new 'Blood Buddies' I may encounter.

 

 

[Trey]

High platelets are often the first indication of CML.  ET is often a mis-diagnosis when it is actually low level CML that is too low to detect.  You are not the first one to have the CML appear during pregnancy, but it is coincidence.  However the body manufactures extra interferon during pregnancy which is believed to mask the CML until after delivery.  Interferon has been used as a CML therapy.

 

Most take Sprycel with food.  Some before bed, but experimenting is the best way to find what timing works.  There is no "one best time" for everyone.  Others will share their experiences.

 

Your "Blood Buddies" phrase is one way to put it.  Nothing like "new blood" on the forum to introduce new terminology -- I like it.  We use Best Imaginary Friends (BIFs) due to a joke from way back. 

 

Glad you found us.  You will do well.

[rcase13]

Since Sprycel also has the QT Prolongation warning why doesn't it also have the warning to not take with food?

Just wondering as I sit here waiting to eat but can't because I can't eat two hours before my Tasigna dose... I'm hungry and jelouse that the Sprycel folks don't have to wait to eat. Sometimes that three hour wait is tough!

Did I mention I'm hungry!

[Jamie2015]

Thank you for your reply.  I am looking forward to being able to talk about this with people who are experiencing what I am.  Helps calm the nerves down a little.    After searching online for forums/ others who can relate to me I ran across this one and I am definitely glad I made this discovery. 1 Week of having CML down.

[mlk210]

Hi Jamie! I'm just shy of 6 months since starting therapy. I'm also on 100mg of Sprycel. I went through a range of emotions after being diagnosed. Shock when I got the diagnosis, happy to hear I just take a pill, fear about taking a pill for the rest of my life that no one truly knows what it will do to my body long term. In the beginning, the side effects reminded me of having the disease and the question of my future. But after almost six months, I feel back to myself most days. Other than taking my pill, and a little muscle discomfort, I'm able to do everything I did before diagnosis. It's more emotional than physical for me to tell you the truth. I keep reminding myself that there's nothing I can do except take the pill. Once I got my three month test results, I calmed down more knowing the pill was working. 

 

Everyone has different side effects, but I had horrendous headaches for about 10 days when I started Sprycel. I posted a question about them on here and I was comforted to know others had the same side effect. Then I had this odd dizziness or vertigo that happened quite frequently the first two or so months. My onc didn't think it was a side effect, but I never had it before and it's subsided recently. Right now I take my pill at 2pm, which isn't the most convenient. I had been taking it in the morning when I first started with a piece of toast or something lighter. Then I had a surgery and took my pill later that day. I just never changed the time after that. I'm thinking about moving it to nighttime though. I've taken my pill on an empty stomach and with food, no difference.

 

I love this forum and everyone is very nice and helpful! Welcome

[CallMeLucky]

When you take it will be personal preference , the most portent thing is to take it around the same time every day. So pick a time you will remember and be consistent.
Best of luck
Btw I'm on Sprycel 100mg and I've had cml for 4.5 years.

[pammartin]

Everyone has their own schedule that works for them. Discovering your best time to take the med might take a bit. I have become a firm believer in sleeping off side effects if possible. Any meds I can take before bed (with my Ambien) are great. Once the Ambient kicks in, the side effects disappear with sleep. Good luck & welcome.

[klf2013]

Hello Blood Buddy!!

A new baby and CML! Good times!    First and foremost, CONGRATULATIONS on your beautiful baby!!! I think we all would reassure you that you will see her grow up! 

As for the Sprycel, time, side effects etc.... I take Sprycel 100mg in the morning only because I take Celexa at night and didn't want to take them at the same time. Sometimes I take it with food, sometimes not.  I agree with everyone else, pick your time and then try and stick with it. Don't forget it!!!  I have mine in a pill box...I tend to forget if I took it or not! (I blame that on the med!)    It is possible that you take the med with little to no side effects.  However, it is also possible that you will experience weird stuff. Personally, I would take my pill around 7 or 8 am, and by 2pm I would be nauseated, have a headache and a temp for about 5 hours, then it would go away.  That took about a month to work through my system. I still spike to 99.7 around 2pm, but not everyday. Report everything to your doc...chances are he/she will tell you that what you are feeling aren't from the med. It seems to be the commonality with all of us!   Feel free to share the good and the bad here. I just found this site a few weeks ago and I wish I had looked for it a year ago when I was diagnosed. The people here will make you laugh and become that soft spot to fall when you need it! Welcome aboard!!!

[kueljuel]

Jamie2015-I was diagnosed when I was pregnant at 36, at 5 months in. OB was watching my counts go up from before pregnancy, and decided at my glucose test it was time to refer me to an ocologist. Talk about scary...I get it completely. Really...I'm pregnant and just found out I have CML and can't do anything about it until after I deliver. I was very lucky in that the highest my count ever got was 42k so they found it really, really early. I have been on Gleevec since 2 months after I delivered and all has been fine. I experience different side effects but have attributed it to having a little one running me ragged. I was taking Gleevec at night along with my zoloft and had bouts with queasiness and would take with some crackers, or some kinda carb to hopefully help. Sometimes it does, sometimes it doesn't. I have yet to find a perfect time of day to take it. Before a meal, right after a meal, a bit after I eat...before a snack...taking with zoloft I actually figured that was what was making me queasy and not the Gleevec but from reading on here, it appears it could be both. It is very scary, but comforting in the fact that we are lucky enough to take a pill a day to live a long and mostly normal life. Lucky and blessed I have to say. I'm new here as well. I have thought up until now I was FINE, NORMAL...I think I say that outloud to not only convinece and ease the people around me, but to keep reassuring myself. In all of that, I have neglected that though we are able to live "normal" lives, I still need to talk about it, and hear about others struggles, triumphs and thoughts to make me feel like I'm not alone, and though we do seemingly live normal lives, we will forever have CML and have to take a pill. Good and bad of it. I'm rattling, but more than anything  am thankful for this group. I'm new and have creeped for the past 2 days through all the threads, I know it's a tight group that supports and we all have a common thread. You are young, got it early and have the pill to remind you each day that you have a very bright future. Bless your sweet little baby girl. I got mine and she rules the world for sure.

[Jamie2015]

Jamie2015-I was diagnosed when I was pregnant at 36, at 5 months in. OB was watching my counts go up from before pregnancy, and decided at my glucose test it was time to refer me to an ocologist. Talk about scary...I get it completely. Really...I'm pregnant and just found out I have CML and can't do anything about it until after I deliver. I was very lucky in that the highest my count ever got was 42k so they found it really, really early. I have been on Gleevec since 2 months after I delivered and all has been fine. I experience different side effects but have attributed it to having a little one running me ragged. I was taking Gleevec at night along with my zoloft and had bouts with queasiness and would take with some crackers, or some kinda carb to hopefully help. Sometimes it does, sometimes it doesn't. I have yet to find a perfect time of day to take it. Before a meal, right after a meal, a bit after I eat...before a snack...taking with zoloft I actually figured that was what was making me queasy and not the Gleevec but from reading on here, it appears it could be both. It is very scary, but comforting in the fact that we are lucky enough to take a pill a day to live a long and mostly normal life. Lucky and blessed I have to say. I'm new here as well. I have thought up until now I was FINE, NORMAL...I think I say that outloud to not only convinece and ease the people around me, but to keep reassuring myself. In all of that, I have neglected that though we are able to live "normal" lives, I still need to talk about it, and hear about others struggles, triumphs and thoughts to make me feel like I'm not alone, and though we do seemingly live normal lives, we will forever have CML and have to take a pill. Good and bad of it. I'm rattling, but more than anything am thankful for this group. I'm new and have creeped for the past 2 days through all the threads, I know it's a tight group that supports and we all have a common thread. You are young, got it early and have the pill to remind you each day that you have a very bright future. Bless your sweet little baby girl. I got mine and she rules the world for sure.

Sad to hear you experienced something similar to me but happy I can relate! It is INCREDIBLY scary to think that something is wrong with you. Especially when they seal it with the word 'CANCER' :/ I experienced a few side affects so far on my Sprycel but everyday I try and remind myself that I am lucky to be here. Watching my kids grow up and spending time with the people I love. .

Definitely have my good days and my bad. One day wake up feeling like I can conquer the world then a day later wake up just feeling incredibly hopeless and down. I love reading this forum and having occasional chuckles by some comments I've read on here. Truly does lift the spirit.

Hope all is well with your baby girl!

Ps does anyone in Houston know of any CML groups?

[Billie Murawski]

Hi KJL & JAMIE,

  Congratulations on both your beautiful healthy babies, there are a couple women on this board who would like to go off their med so they can have a baby, your stories are so encouraging. Once you get used to the shock of your dx and your meds  give it a good 3 months for your body to totally adjust to the meds it's gradual but everyday you'll be getting better and those cancer cells will become undetectable (I have been for 4 years now ) I was dx in 2007. It will take you a while to get the C word out of your head, at first I had an awful time coping with my dx but eventually I did. You both are a lot younger than me so I'm sure you will adjust to your (New Normal) quite well. When you hold your beautiful babies just think it wasn't that long ago a dx of cml  was pretty much terminal but now you'll be around for every special moment in their lives. And you'll still be here to see your grandchildren, don't laugh you won't believe how fast time is going to fly. Stick with us and you will be fine all your questions will be answered. Because you both have newborn babies if someone tells you to get a lot of rest Punch their lights out!!!         Sincerely Billie

[Lisa Lisa]

Hi Jamie,
I am also newly diagnosed and start the Sprycel today. I would love to hear how you are doing on it, with the time you decided to take it and the side effects. Hopefully they are minimal. I wish you only the best!

[Jamie2015]

Lisa,
I have to admit. I am guilty of the waiting around waiting to feel bad after taking my Sprycel. -.- I think it just comes naturally to anticipate the worst. The day after my first dose I woke up with a killer headache, and the headache did last for a few days. I take mine in the morning because Im a wine and cheese kind of lady. . I figured taking my meds in the morning (8:30 am) would give it plenty of time before I did indulge in a nice glass ménage a trois. )) After a month of going through the headaches the being upset, the waking up just crying because I couldn't imagine this being my life. I told myself I CANNOT wake, up everyday anticipating the worst. I was happy before this and I won't let anything steal that from me. Ever since that day I don't dread taking my meds. I get the occasional headache and leg cramps... But if thats what I have to deal with to be able to live life then well Ill take it:)

I choose 8:30 am for me because I have children and no matter what even on weekends I would be up by that time. I always try and eat something before I take my meds. It says can take with or without food but I did get a little nauseated once when I did not eat.., sooo figured Id not try that again lol.

Even on your hardest day just remember "if you can take it you can make it" do not let this steal your joy (harder to do, I know)

You will be fabulous and my prayers go out to you that you experience little to no side effects

[Lisa Lisa]

Thanks Jaime (smiley) when I figure out how to post a smiley face symbol on this site I'll put one up!