9 replies to this topic

[markandelly]

We've been posting & reading posts since April 2005 when husband was dx. Haven't been on here for awhile. Recognize some names from back then. Reading lots of familiar comments , to newbies, yes, the side effects subside after awhile but maybe its more like you learn how to manage them. I don't know b/c I don't have it, but speaking from observation over time I think its a combination of both. He's been on 400mg Gleevec over 6 yrs now.  The eye bleeds and swollen eyes a little worse lately. Wondering if anyone has been brave enough to take a break off the Gleevec for any length of time?  Still waiting (and waiting and waiting) for a trial so that people like Mark who have been in complete remission for years could try at least cutting the dose to see if the side effects improve, including fatigue, stomach issues.  He's only going to oncologist every 6 mos. now.  So therefore insurance won't cover extra blood work to monitor if the disease kicks back up if he tries to cut down or take a break off it for awhile on his own.   If anyone reads this who has taken a break off it for any length of time would you please respond? If you did, did you notice any difference in side effects? (how long did you take a break?)  Have you read anywhere of a trial to see if a person can get off it ?  Thanks for any input.

[valiantchong]

Hi,

I have read some people did  Stop Gleevec for awhile and be ok...you could check out the guy report in this link http://www.cmlsupport.org.uk/node/6645

However he is on close monitoring on PCR coz the with present knowledge we are still not sure why it work on some people only, may be 40% per the STIM trial results.

[markandelly]

thank you for your reply, I will watch the link.  Still so many unknowns. thanks again

[Trey]

A better approach may be to reduce the dosage.  You can read this discussion:

http://community.lls.../message/112171

[valiantchong]

Yes too many unknown. You will need to discuss with doc, and condition need to be PCRU at least 2 years. However you could start with lowering dosage first to see if the side effect is lessen. Still close monitoring of PCR is still needed.

[hannibellemo]

I don't see why you couldn't discuss a dose reduction to 300mg per day considering his response to G. If the doc is resistant to that I would press the case. Search for discussions on that on this board as I know we have had some recent ones and you will have some rebuttals ready for his/her concerns about lowering doses.

Another thing is to start splitting the 400mg into 2 doses per day instead of one. Several people have had relief from some of their more bothersome side effects doing that. I definitely would not want to take any kind of break if your husband will not be having more frequent blood tests to go along with it. That way there be dragons!

It's always nice for the rest of us to hear from those who have had long-term success on these drugs. Thanks for posting!

Pat

[Trey]

Newmans,

Tried to respond to internal email but my reply was rejected due to your inbox being full.  5 messages maximum, inbox and sent mail all count.

Most of the information you requested was in the follwoing posting, so I will not reiterate that information:

http://community.lls.../message/112171

My Onc was not supportive,  either, but it's my decision as far as I am concerned.  It reduced my  side effects, so I am happy with what I am doing.

I responded very quickly to Gleevec.  Was PCRU in under a year.  I think that supports taking a lower dosage since it shows that I process Gleevec very well.

There  are other possible options, such as alternating 400mg and 200mg every  other day.  Or alternating 300mg and 200mg every other day.  Or 300mg  per day.

[markandelly]

Thanks Trey.  You got our email so we hope to be in touch . Im awaiting an email fr/ Anjana. Our local cancer connection warned against reduing the dosage. She said its safer to just go off it for a couple weeks.  Its the next step, to see how to live with CML without drug side effects.  If the drug itself is causing the worst side effect then it only makes sense to find out  how to adjust dosage and enjoy a better quality of life as well.

[anjana]

Dear Elly,

  I have got your email from Dorothy and will interact and keep in touch there.  I do concur with Dorothy on the risks of suboptimal dosing like 200mg a day.  I would just like to add that I asked one of the top CML experts about Gleevec breaks for Roy and he said that 10-14 days off Gleevec was fine.  Roy's side-effects are still manageable but it was good to know he has this option.

  Regarding 300mg dose, I know a few folks on this dose who see Dr. Druker and Dr. Cortes and they are doing fine but one friend does not see any reduction in side-effects going 100mg down in dose but please note that Dr. Cortes has not reduced her dose to 200mg a day.

  Elly, I think its okay for Mark to go off Gleevec for a fortnight to see how he feels. Our doctor said some of his patients have come back from a break saying their side-effects have lessened so keeping fingers crossed.  But too many Gleevec breaks are not recommended because then the PCR may go up.

  There are options nowadays, dear Elly.  If Mark really cannot tolerate Gleevec, there is Sprycel and Tasigna, so hang in there.  I will be interacting with you by private email.  Good to hear from you again!

Warm Regards,

Anjana

caregiver to Roy

400mg Gleevec

d/x Jan 2002

Remission 

[markandelly]

Thanks for all the helpful input. Mark is struggling with side effects. We're going to do some research as to why a person's side effects would get worse after so many years of taking it.