34 replies to this topic

[Trey]

I took 400mg for several years and split dosage 200mg morning and evening.  I did this by splitting the 400mg pills.  My Onc approved.  When I decreased to 200mg I still split the 400mg tablets but changed over to 100mg tablets and took 2 per day.  That works easier but either is fine.

 

I would at least reduce dosage.  Your wife's Onc does not know any more about this issue than we do. 

[Gail's]

I have always wondered why the 400 mg tablets of gleevec were scored for ease of breaking in half while the manufacturer said not to split them. Hmmmmm?? Can't remember if we've talked about splitting Sprycel. I'm now on 50 mg. If next few tests are good, I think I'll split them so I get 25 mg/day to see if I can take a lowered dose. My very progressive oncologist is reluctant to go to 20 mg until more research is done, but I'm going to try on my own if I have good tests over the next few months.

[scuba]

I have always wondered why the 400 mg tablets of gleevec were scored for ease of breaking in half while the manufacturer said not to split them. Hmmmmm?? Can't remember if we've talked about splitting Sprycel. I'm now on 50 mg. If next few tests are good, I think I'll split them so I get 25 mg/day to see if I can take a lowered dose. My very progressive oncologist is reluctant to go to 20 mg until more research is done, but I'm going to try on my own if I have good tests over the next few months.

 

I am on 20mg Sprycel. In fact, I was re-started on 20mg because my Oncologist believed starting low and working up was preferred given Sprycel's side effects profile (pleural effusion, myelosuppression). This is the exact opposite of what most Oncologists practice. CML in chronic phase where blast cells are not present affords time to test dose against response. Dr. Cortes was prepared to increase my dose gradually if response was not sufficient. In my case (and in his many other patients), I was started at 20mg and never needed to increase. My PCR dropped dramatically from 50% to where it is now (< 0.01%) all while taking 20mg Sprycel.

[tazdad08]

Such a great post!! So much useful information. I decided myself to drastically drop my dose of Tasigna to 600 MG per week. I took one 200 MG dose three days a week. That kept me undetectable for 3 years. I had a blip and was detectable and decided to follow Dr's recommended dose of 400 MG per day. That put back to pcru within 3 months. I've held that for almost a year now. My dr has now said I can "PLAY" with my dose for a better balance of life. It's nice to have a Dr that supports you.

[gianfranko]

Thanks to everyone for the replies.  I am talking it over now with my wife.  We, most likely, will be dropping her gleevec dose.

[Marnie]

I have always wondered why the 400 mg tablets of gleevec were scored for ease of breaking in half while the manufacturer said not to split them. Hmmmmm?? Can't remember if we've talked about splitting Sprycel. I'm now on 50 mg. If next few tests are good, I think I'll split them so I get 25 mg/day to see if I can take a lowered dose. My very progressive oncologist is reluctant to go to 20 mg until more research is done, but I'm going to try on my own if I have good tests over the next few months.

I am splitting my 50 mg pills.  My onc is supportive of this.  It took me awhile to get back to PCRU after a drug break due to pleural effusion, but ~25 mg is currently keeping me there.  Good luck.

[Buzzm1]

Thanks to everyone for the replies.  I am talking it over now with my wife.  We, most likely, will be dropping her gleevec dose.

gianfranko, please keep us informed of her future testing results ... thanks in advance.

[gianfranko]

So after 2 - 3 weeks of being on half-dose (200mg) of gleevec, my wife developed some itchiness and skin rashes. We were unsure what caused it so she has now gone back on full dose.  Did anyone experience a similar reaction while lowering gleevec dosage.  

 

We are not even sure if the two things are related, but we didn't know what to do...

[Buzzm1]

So after 2 - 3 weeks of being on half-dose (200mg) of gleevec, my wife developed some itchiness and skin rashes. We were unsure what caused it so she has now gone back on full dose.  Did anyone experience a similar reaction while lowering gleevec dosage.  

 

We are not even sure if the two things are related, but we didn't know what to do...

gianfranko, withdrawal side-effects from TKIs come in many shapes and forms, and are experienced by a significant percentage of people who either reduce their dosage, or have ceased taking a TKI, but they normally dissipate with time.  Perhaps first reducing to 300mg, by alternating full dose (400mg) and half dose (200mg), will lessen these side-effects, or at least make them more tolerable until, with time, they fade away.  

[Floa7]

I have had CML for over 5 years, first 3 years on Gleevec and switched to Tasigna. I have been undetectable for 2 years  and my doc told me I could stop taking the Tasigna as of last Friday. I have my blood work done in a month to see what has happened. It will be just a break to be off of the Tasigna for a month, but I won't know unless I try.

 

My son stopped his Sprycel and he had to go back onto it

[Jan0080]

I started Sprycel just over 90 days ago. My PCR has dropped 98%! My Oncologist consulted with a top San Francisco Dr and agreed to reduce my dosage from 100 mg to 80 mg. The expert had stated that if I were not taking Omeprazole, that I could drop to 50 mg. I take my Sprycel when I first wake up which is often at the ungodly hour of 2:30 AM. I always wait 4 hours before taking my Omeprazole. Already some of the bad side effects appear to have been reduced. My conclusion is that the Doctors have no idea what dose we should be given. The testing is first to discover what the maximum safe dose is not what the minimum successful dose is. I had several nights of muscle pain when I was glad that I didn't have a gun in my house, the pain was excruciating. I haven't had any muscle pain in two weeks, hooray! My latest side effect is an inability to focus my eyes while reading. I have to close one eye to read. While it is probably due to Sprycel, I am a CPA and under huge pressure to get tax returns completed. Thus I can't say whether my eyesight issue is due to stress or Sprycel. My Ophthalmologist leans towards Sprycel but wants me to have an MRI to rule a brain tumor. That will wait until after April 18th.

My major point is that there has been no testing to determine the minimum dose that one should take if one reacts favorably to TKIs. TKIs cause side effects because the enzymes that get blocked are important to various parts of our bodies. I am thrilled that we have effective medicine. We are going to be on our meds for a long time. We need to have the least side effects as possible!

[gerry]

So after 2 - 3 weeks of being on half-dose (200mg) of gleevec, my wife developed some itchiness and skin rashes. We were unsure what caused it so she has now gone back on full dose. Did anyone experience a similar reaction while lowering gleevec dosage.

We are not even sure if the two things are related, but we didn't know what to do...

Unusual having a skin reaction with a decrease in Gleevec, but you never know. I had the Gleevec rash return a few months into treatment, but I was sick with a number of infections at the time so put it down to immune system not being able to manage everything. I was still on full dosage at the time. If the rash has disappeared again, I would try reducing dosage again. Maybe drop to 300 first, you do notice a reduction in side effects at that level. Good luck with everything.

[gianfranko]

I wanted to give an update on this.  My wife was on 200mg of gleevec for 1.5 months (the other 1.5 months she was full dose) and still tested PCRU. (yay!   ).  She is now going for 4.5 months on 200mg but she is getting increasingly anxious about staying at the low dose.  She recently read the info on this page:

 

http://www.onclive.c...merging-for-cml

 

specifically this part: "The EURO-SKI trial enrolled 821 patients with chronic phase CML across 11 European countries...Most recurrences were in the first 6 months (78.3%). There were 4 deaths among those who experienced remission."

 

She read that and thought that these 4 people died because they discontinued gleevec.  I am no logic expert but if these people were in remission and died, doesn't this point to something other than cancer as caused of death.  And, hence, nothing to do with their gleevec cessation?

 

I have been trying to find exactly what these people died of.  Anyone here have a more in-depth knowledge of the above-mentioned trial?  Or how to go about finding the cause of death for these people?

 

I am trying to convince my wife to just stay on 200mg until the next PCR.  We can make a decision once the results are in.

In a unrelated note, she still is experiencing itchiness and has to take antihistamines to control it.  She is going to see an allergist / immunologist in the coming weeks.  She still thinks it is related to the lower gleevec dosage.

[gerry]

Badly written - these people would have died from something else not the CML. Not sure what they might have died from, vehicle crash, heart attack etc.

If they had died as a result of stopping their TKI it would have been clearly reported in this article and others that have been published.

[TeddyB]

I agree with gerry.

Also, i am pretty sure the EURO-SKI is for stopping treatment completely, not reducing