I have seen from looking through past threads that a few of you have tried 300mg Glivec .
This is an option my husband is considering as his side effects are getting progressively worse. Does anyone have any experiences or advice they are willing to share?
Many thanks
Lydia
Lydia, I posted some information below entitled "Therapeutic drug monitoring of TKIs" This described some work which shows that the level of imatinib in the blood varies a lot between patients on the same dose. I would definitely suggest that your husband asks his specialist to get his blood imatinib checked before he decides to reduce the dose. If the level is well above 1ng/ml it may be worth trying the dose reduction, as this is the level which is widely accepted as being necessary to acheive a good response. Prof Bob Flanagan's team at Kings College Hospital can do this from a blood sample and I don't think it costs much. There is a link to his paper on the home page of this site. If your husband's serum level is below 1ng/ml at 400mg trying another TKI might be a better way forward.
As I posted in another thread a few weeks ago I had (and still have) a very low white cell count. My specialist reduced my imatinib to 200mg for a while because of that, and then we went back to 400mg when it didn't have an impact on my WBC. We both agree now that reducing to 200mg was a mistake and it delayed my getting to MMR, although I am now PCRU and fine. The blood test I've talked about above was not available then. If it had been available and I knew then what I know now I would have pushed to get it done.
Incidentally how is your husbande BCR/ABL? If he has not yet achieved MMR I would definitely get the blood level checked if possible.
I hope this helps
Alastair
Hi Alistair,
Now, that's very interesting. Especially patients on the same dose not necessarily having the same level of drug in the bloodstream. That had not occurred to me before but everyone is different and it does makes sense. That test you mention is definately worth looking into and I will do that. My husband achieved MMR within the expected timescales and has been PRCU for 4 years. He doesn't really want to change TKI on the grounds that it is doing it's job and keeping him with us. I'll have a look through the reading you have recommended. Thank you.
Lydia
Lydia,
Alistair advice is good and I agree that it would be a good first step - esp. given your husband does not want to change therapy -
For quite a few years now (since 2012 I think) we have had a link on the lower right hand menu to the EUTOS website which has information regarding plasma trough levels and the effects of too low a level might have on response and equally what too high a level might have on side effects?
see here: http://www.cmlsupport.org.uk/files/BLT_backgrounder_EUTOS.pdf
I hope the information it contains may be helpful for you to talk with your husbands doctor.
Sandy
Lydia glad to hear your husband is PCRU. I think the test is well worth doing as he may well have a high blood/serum level which would give him more than a therapeutic level in his system which may cause the side effects. This is exactly the sort of scenario Prof Flanagan was talking about needing the test for.Please let us know what happens - all adds to the body of knowledge on the forum.
Well, thank you both Sandy and Alistair. I searched for Prof. Flanagan at Kings and actually came up with the very test you refer to and his contact details! I have written to him and we'll see what he says. Hubby really feels there is too much Glivec swimming around in his system; he can even taste it long after taking it. This could be good; fingers crossed. I'll let you know.....
With regards
Lydia
