8 replies to this topic

[Idahogal]

When I was in the Huntsman Cancer Center this past summer, the doctor there said that I should only be taking 100mg of Sprycel because there had been tests showing fluid around the heart with a higher dosage. When I went to my onc.,back here in Idaho, he said no way I needed to be on 140mg daily. I have been on 140mg for about 6 months now. I have noticed that many of you on this site are on  lesser doses so it makes me wonder.  Thanks!

[tiouki]

Hello!

Your Idaho onc is wrong, now the standard treatment dosage is 100mg. 140mg has been proven not to be more effective + it increases the risk to get side effects such as pleural effusions (water in lungs) or fluid around the heart as you said. I suggest you to make both onc in contact or to contact a CML specialist

Pierre

[pammartin]

Hi,

I took 140 mg of Sprycel for about 4 months.  I began with the 100 mg last fall and it did not work for me.  I ended up on the 140 mg of Sprycel and 2000 mg of Hydrea daily for two weeks when they raised the dosage. (this high power concoction with both meds can only be taken for 2 weeks) I did respond, but my labs bottomed out low enough I had to stop taking all meds for several weeks.  3 weeks ago my PCR test showed .004%, in October it was 84%, so the doctor decided to lower the Sprycel dose to 100 mg again.  They are watching me closely, my white count and platelets are continuing to rise, this could be a leveling out of my numbers because I have been low for months, or it could mean I am not responding once again to the 100 mg.  The doctor explained we can try the lowered dosage, but he is not convinced it will work for my situation.  I will note I had many more side effects on the 140 mg, loss of hair, hot patches on my face, ears, and head, an overall feeling of having the flu all the time, almost no energy, and joint aches.  Although there is a host of data out there stating 100 mg of Sprycel is as effective as 140 mg, I am convinced for some situations and body chemistry the 140 mg is going to be what it takes to control the CML.  I am waiting for this weeks labs, the review of how much my counts continue to change may initiate another PCR to see if I am loosing response on the 100 mg.  I have to be honest I hate taking the 140 mg, quality of life for me is poor, so then I weigh in at do I want to have less side effects and possibly lose response, or do I want to feel like crap all the time.  One thing they are looking at also this week, on the 140 mg my liver enzymes have changed dramatically, so I await testing to see if they are also leveling out, or I may have another issue going on.  Best of luck!

Pam

[tiouki]

Hello pammartin, in your case maybe you would need a higher dosage (were you in chronic phase at diagnosis?) but you are an exception, the standard dosage for CML in CP is 100mg and it works for >99% of people . In Idahogal's case, it is likely that 100mg would work as well and would limit the negative effects of the drug. (were you also in chronic phase?). 140mg is the recommended dosage for accelerated/blastic phase CML.

Pierre

[pammartin]

Hi-ya,

I began at 100 mg but platelets and white count just kept rising.  There has been serious confusion about what stage I was diagnosed in.  The doctor listed me as accelerated stage, but when I posted my results on this site, they noted no blast cells found.  This was one of the reasons why I began looking for a CML specialist.  When the last PCR revealed .004, I put my search on hold, there is no medical reason to see one at present.  I am waiting for this weeks labs, even though I sit and wait for the phone to ring, unfortunately the doctors office does not share my impatience.  You are correct, it was what I was *trying* to say although there are some people who will need the 140 mg. most do get by with 100 mg. or less.  I have always been an exception, if my mother was still around she would tell you just how much!.

Pam

[Judy2]

Hi Pam M.,

I'm praying  that your blood counts are leveling off and not continuing to rise. Also hoping your liver studies are beginning to come back to the normal range. Just wanted to let you know I am thinking of you.

Hugs,

Judy

[pammartin]

hi Judy, just posted results and a whole lot of venting also.  Hope your day is good.

[hannibellemo]

Idahogal,

I must agree with Pierre except that pleural effusion is not water in the lung it is fluid between the linings on the outside of the lung. There is a huge difference. PEs were much more prevalent during the trials when patients where taking 140 mg. (70 mg. 2x per day).  Trials also showed that by reducing the chronic dosage to 100 mg. PEs were greatly reduced but the function of the pill (reducing leukemic cells in blood) was not.

To be blunt, your problem is your doctor, you need a new one, this one does not know what the heck he/she is doing. Unless you are a high risk CML patient there is no reason you need to be on 140 mg/day. If you are or become a high risk patient you definitely need a new physician!

Good luck!

Pat

Sorry, forgot to add this is all MHO. I just get so angry when docs disregard how a patient feels on a drug. I mean really, if we thought we were going to feel like crap for the rest of our lives how many of us would begin to question if it's worth it? There has to be a happy medium and our docs need to help us find it and they can only do this by listening to us.

[Idahogal]

Thank you for your input and for the information. This is so helpful and I agree wholeheartedly about our doctors listening to us.