4 replies to this topic

[les6693]

Hi Everyone~

I've been reading here for awhile and thought I'd join in.  My name is Lesley and I'm 43.  I was diagnosed with CML on May 25, 2010.  When diagnosed my WBC was 267000.   I have been on Gleevec for 2.5 months but my onc has now decided to switch me to Tasigna.   My wbc is down to 11900 now but he still wants to switch me?   I haven't actually switched yet but will be next week.

The cancer center I go to doesn't even have Tasigna at their pharmacy so I had to get it elsewhere.   The pharmacy I'm getting it from tells me that my cml copay card won't work for it though because of the dosage.   I am not quite sure what the dosage is though because I've never actually seen the actual prescription myself.. It was called in to this other pharmacy by the cancer center.   My onc did mention to me the dosage but I guess I didn't pay any attention to it. Not thinking at the time that it could/would effect the copay card.     I guess I'm just going to go forward and get it filled Monday without the copay card and deal with that later..    Wow.. I can't believe it's $7800 a month.. Thankfully I only have to pay $100 a month..      I guess I just don't understand why my dosage would not be the "norm" ya know?   It's not like my numbers are crazy like they were in the beginning.

I have had alot of nausea and leg pain from the Gleevec but nothing too unbearable.   I've read some of the posts about Tasigna. I'm hoping it will not cause me any crazy side effects.

I did read on the brochure they gave me that they recommend an "ecg" prior to and several days after taking it.. Noone talked to me about an "ecg".. Those of you on Tasigna.. Did you have one done?

I've read alot of your posts about FISH results, etc.. and I hate to sound uninformed, perhaps I am.. But noone has talked to me about this, so I'm unsure exactly what this is and why it is my onc hasn't talked to me about these results.  I do however get a printed copy of my cbc's every time.    I was going to the onc regularly but after my visit August 20th, he doesn't want to see me back until October 20th.   I guess that's good.. He tells me that I will have to have another BMB in November..  I had one the very first day I saw him and it was excruciating to say the least.. But I guess I don't tolerate pain well either.. I told him next time he WILL be knocking me out or something.  ~lol~

I'm sure I will have more questions but just wanted to join for now and introduce myself.

Thanks for reading~

Lesley

[PaulB]

Welcome!  I too am 43 and was diagnosed on June 25, 2010.  I never took Gleevec, but was started on Tasigna from the beginning.  My WBC was 64000 when I started.  My initial dosage was 600mg/day (it comes in 150mg pills or 200mg pills).  Typical dosage amounts are 600mg/day or 800mg/day.  After 2 weeks, my WBC was down to 8600 then 4500 the next week and has been "normal" ever since (knock on wood).  The main side effects I experienced were some initial bone aches especially in the legs and feet and some mild headaches.  They eventually reduced significantly to where they are very manageable  or even mostly unnoticeable.  I also had a higher than normal bilirubin count (2-3) but that is not to far from normal (.2-1.2).

I did have two ecg's.  Very important!  The first one was done prior to me taking Tasigna to get a baseline.  The second one was done 1 week after I started to see if there was any change from the first.   I believe these should be done periodically but especially if there is a dosage change.

I too am still learning about the various test (FISH, etc.) so really can't speak to that yet.

I'm sorry to hear that your BMB was extremely painful.  Mine was very routine and did not hurt at all.  The way my onc described the procedure as he was performing it was right on and very comforting.  If it was painful, I would definately get knocked out the next time.  No need to experience pain if it can be avoided.

Well, nice hearing from you and I wish you the best.  Praying for everyone!!!!

[Susan61]

Hi Lesley:  Welcome to our group.  We are all going through the same thing, and its a great place for you to talk or vent or ask questions.  Somebody is always around to help you out.  I was diagnosed in 1998, and it will be 12 year survival for me this December.  Been on Gleevec 400mg. since 2000.

I started out with the old fashioned treatment of shots, because Gleevec was not in clinical trial yet.  I did the trial in New York in 2000..

    As for your BMB, I also could not tolerate the pain.  Everyone is different.  They had to start giving me the Lidocaine with IV Versed, and some Demerol.

That was the only way I could handle it. Ask your doctor before you get another one if you can get something stronger than what they gave you last time.

    Also, I always tell everyone to be sure you are seeing a doctor that is treating numerous CML patients.  Some Oncologists are not familiar with a lot of things believe it or not.  Please let us know how you are doing, and if you get into a bind with the finances for the meds just apply for help from the Pharmaceutical Company who makes whatever it is your taking.

  Seems like your doctor did not want to give the Gleevec anymore time.  Hope the Tasigna is better for you with not too many side effects.

Susan

[Trey]

Lesley,

Here are a couple previous postings that might help.

Info for the newly diagnosed:

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

Information on CML testing including FISH:

http://community.lls.org/thread/2821?tstart=0

[ADCARSON]

Welcome Lesley, I am new to the group too.  I was diagnosed July 12 and was on Tasigna first (800 mg)  My body did not tolerate it very well although it did a good job of lowering my WBC.  I had fluid in my lungs and I was very uncomfortable....Doctor took me off for a few days to give my body a break and then put me on 400 mg of Gleevec.   Even though my body tolerated it better than the Tasigna it was still hard...I was swelling...........the doctor decided to lower my dose...........to get my body used to it.  It is SO much better on the lower dose.  I get to stay on it a month longer before he raises it but will raise it gradually.  I too think that it is important to have a doctor you treats many people with leukemia..they just know so much more and seem comfortable with making changes to your treatment plan.  My doctor specializes in leukemia and he knows his stuff.  I am blessed.  Good luck to you and keep us posted.