30 replies to this topic

[NotJack?]

Hey Mark,

I have a learning disability, and have to either read aloud or have someone read to me in order to retain content.  I understood that you also have issues like mine for whatever reasons.  My advice, such as it is, is for you to go to Trey's CML blog and have the text read to you.  Trey does a great job of making things clear.  Another tip is to always bring at least one other person with you to the meetings with the doctors or doctor's representative.  This will help keep misunderstandings to a minimum.  Also, get a CML specialist to interpret lab content and advise your general oncologist as to proper testing, timing of tests, dosage and drug issues, etc.  The specialists are up on the latest information on your condition. I have the unhappy situation of having my general onc(who I like and respect), disagree with my CML onc.  So that when I try to follow standard protocol for CML as advised by my CML specialist, he refuses or discourages me from them, saying that odds are that the tests are unnecessary.  And, he says that it is rare that a onc can just prescribe pills to contain a cancer,  and that the rest will take care of itself--so stop being so involved with the details, and since it is a slow growing cancer, it is less of an issue to do in depth analysis to eliminate other possibilities.  His perspective is that of the cancers that he treats, this one is very treatable, so don't deal with this cancer the same as a cancer with a less favorable prognosis.  I get his point, but that is like not following a doctor's orders for treatment of a loss of your foot because its not like you lost your leg.  So, anyway, I am dropping my general onc, and going with the expert. 

I agree that the hair loss sucks!  I think that that will turn around.  I will leave the determination of the reason for the side pain to more knowledgable folks here.  ( Perhaps spleen and liver pain from dealing with the excess Tasigna?  I just don't know.)  But, you probably have been getting a larger than prescribed dose of Tasigna by eating to closely to the pill time.   I will try to call you soon, as I understand that that is your preferred contact.  Take care, Jack.

[markmendonca]

Thanks  so much . you sound like a great person and i would like to talk on the phone its easy for me thanks again . 

[BrennanR]

Hey all, I am a 22 year old guy from Ohio. I was diagnosed with CML only 7 months ago. First, I started taking Sprycel. Within 3 months it lowered my blood counts to much so I stayed off treatment for 3 weeks and started on a lower dose... same outcome. So, I then was switched to Gleevec. I was on Gleevec for three weeks when I had to leave work and go to the hospital. I was very lightheaded and felt warm. I got to the hospital expecting to have the flu or a cold etc... That was not the case. I ended up in the hospital for 11 days, and the Gleevec put me there. I had a fever of 105° for 5 days. Had a rash from head to toe. Swollen face and hands. Diarrhea, nausea, light headed, fatigue, lack of appetite, lost 10 pounds, fluid retention in the lining of my heart and around my lungs. Overall it was horrible. It took 5 days for them to even have an idea on what was wrong with me. There were 6 doctors, 7 residents, and 2 fellows all working on my case. Finally the told me that i have what is called D.R.E.S.S. which is due to the Gleevec, and that I am one of three in the world ever documented to have gotten this from Gleevec. So now, 2 weeks after being out of the hospital and 3 weeks off treatment, I'm starting my Tasigna today. Hopefully this works. My head oncologist thinks that all TKIs are not going to work for me based on my bad luck in the past. So now they're starting the procedures for BMT/SCT. We will see what happens! Im a fighter and can get through this.

[mariebow]

Wow Breenan, so sorry for what you have been going through hopefully the Tasigna would work much better.

[BrennanR]

Thank you, I appreciate that.

[hannibellemo]

Hi, Brennan,

Wow, glad you are doing better! Were you by any chance prescribed allpurinol when you were first diagnosed? It is commonly prescribed to bring WBCs  down before starting the initial TKI, in your case, Sprycel. I ask because it is definitely listed as a drug known to cause D.R.E.S.S.  Any of the TKIs can cause pleural effusion (fluid in the lining of the lungs) and pericardial effusion (fluid in the lining, the pericardium, around your heart); Sprycel is most commonly associated with it, though.

In case you are interested there is also a Transplant discussion board here, too, in case you have any questions or concerns about that. I sincerely hope you don't have to go that route. I also hope your doc is wrong about Tasigna, not exactly a Mr. Positive is he?

Good luck!

Pat

[Trey]

So others might understand, DRESS is like an allergic reaction to a drug.  How high did your Eosinophils get?

Some people are just more sensitive to the drugs than others.  You may be a candidate for much lower dosage than normal.  You should ask your Onc to start you on half dosage Tasigna (300mg once per day).

[cam_kris]

Ok Guys Now I am freaking out!!!  My onc told me to take ONLY ex strenght tylenol for headache or any kind of pain.  and everyone on here is saying NOT to take it.  Monday morning I am calling him asap.

he told me try not to take anything but if i have too, take two of Ex Strength Tylenol.  wow that is all i can say!

I have not taken alot of it but i have taken a couple here and there.

I was dx with CML on March 26 2012

I am on tasigna 600mg a day

12 hours apart.  He is so very stricked on everything i put in my mouth or on my body , I dont understand if everyone is saying this why he would say its ok to take it.

my liver functions have been perfect up to a month or two ago and they were elevated slighly, but now they are perfect again.  my primary dr, wants me to have a blood

tests every week, my onc wants it once a month,  I like having it done weekly, just because if anything does arise, we can catch it right away.

this disease has taken and put me in such a whirlwind that i am scared about everything.  it will be interesting to see what he says monday!  Kris

[Sneezy12]

Kris-Acetaminophen should not be taken. The best NSAID to take, if necessary is Naproxen. Regards, Frank

[markmendonca]

brennan my nad is mark i am from boston  i have been on Tasigna for a year now this will work for u god is o your side.. can't spell well but if u need to talk here is my cell number 978-836-8192. they don't like when i give my number out here. but they don't have CML or can't spell like me ....if i can help u in any way please call....

[markmendonca]

Trey i was taking 800 mg { tasigna ) when i started man the rash, hair loss,everything was going nuts i got off for 2 to 3 weeks and u told me to try 600mg and per day..as of 2/5/12... so i did man my doc. did not like that but here i am ....i did a test on 3/30/12 witch made it 6 months on med only 2 months at 600mg my BCR came back 0.05now 5 months it has been going well and i am still on 600 mg Trey thanks u my friend have been a big help to me and us all ....stay heathy u r a great person ,teacher,and freind to us all.........................