Dear all,
Believe or not, we are going into a long holiday here and it
does not seem anybody would inform us what to do for the next month or so!
My dad tmz + radiotherapy sessions would end within two weeks.
I urgently need your help so I can somehow catch someone
before they all disappear in their holidays:
- 1- Is there usually a break before
starting the adjuvant tmz? if yes, for how long?
- 2- From the beginning of the
treatment we never had a MRI, when should it be done? Since there was no
surgery, could they decide whether tmz is the best choice now, or it is usually
after finishing 6 or more cycle of tmz to say?
- 3- He is now on 4mg dexa and 3
wokvel boswellia (I’ve just randomly chosen these dosage and I have no idea if
it is enough or not!), how and when should I start decreasing dexa?
BTW, he is loosing his right visual field (left temporal) ...dose it only means progression? his memory is getting better though I guess...
Any thought or experience is highly appreciated,
thanks.
Yes there is usually a break of about 4 weeks between the end of radiotherapy and the start of monthly TMZ cycles.
ReplyDeleteStandard practise is to do an MRI scan 4-6 weeks from the end of radiation, prior to starting monthly TMZ cycles.
It's too early to say whether TMZ is helpful or not. He would have to do at least a few monthly cycles of TMZ, which is given at double the daily dose compared to the daily dose during radiation.
How long has he been on the 4 mg dose of dex, and what dose was he on prior to that? What does his oncologist say about weaning off dex? The general rule is to use the smallest dose of dex that can effectively control cerebral edema and the related symptoms (headache, nausea etc.). The dose should always be brought down in steps rather than all at once, over a few weeks.
Some people don't even require dexamethasone during radiation, it depends on the individual situation and how much cerebral edema there is. His doctor should be able to offer some guidance on this question.
Thanks Stephen, your right the dr supposed to tell us these things...but that it why for the fist time in my life I hate being in this country so much(apart from not having TTF :))...the dr is really kind but supper busy and dexa became an issue for us.
ReplyDeletemy dad had 8mg till his 18th sessions then it was finished and we did not know that we we should continue it. Then through this blog I found his symptoms (mild headache and double vision)might be sign of edema and how it is important to take care of it.
then they told us to start again with 8mg, we negotiate :) and start again (after those 10-12 days of sudden rupture!) with 4mg and 3 boswellia that I received through my friends just on time.
I don't think I can find the dr with in a month anymore.
So I guess we continue taking this for one week after radiotherapy and then try to taper it.