Dear all,
I wanted to
share our experience with CCNU/TMZ.
Background:
Tumor has MGMT methylated and IDH1+; surgery +
radiation took place in H2 2016. My wife started TMZ according to Stupp early
in 2017. Dose was reduced to 150mg/m² with 2nd cycle because of low
blood counts. She tolerated TMZ pretty well afterwards (almost no nausea, good
blood measures). My wife continued with TMZ after finishing the initial 6 cycles
(total of 8 before switching to CCNU/TMZ). MRIs were stable
but not clear. There is an area with contrast enhancement (stable).
We got our
oncologist to switch to CCNU/TMZ after the first promising NOA-09 results were
released in September 2017. The treatment had a strongly negative impact on
blood counts (neutropenia, thrombocytopenia), so that the cycles lasted ~10 weeks
(instead of 6) and the initial dose was reduced (no other side effects). My
wife got injections to help her over the lows.
Cycle 1 (Oct
17) with 80mg/m² CCNU + 150mg/m² TMZ: Thrombocytes dropped from ~170 -> 50
(low at day ~43, recovered afterwards), leukocytes from 3.5/4 -> 1.3 (low at
day 43 and stayed there for ~ 3 weeks with the exception for an injection).
Cycle 2 (Jan
18) with 80mg/m² CCNU + 100mg/m² TMZ: Thrombocytes dropped from ~180 -> 36
(low at day ~45, again quick recovery afterwards), leukocytes from 3.5/4 ->
1.3 (low at day ~45 and remained low again for ~ 3 weeks).
Cycle 3 (Mar
18) with 50mg/m² CCNU + 100mg/m² TMZ. No results yet (third week).
I assume that
our oncologist will recommend to pause the treatment for a while (will see her
next week) to allow for a recovery.
Did you research any supplements (PSK, chlorella, spirulina,...) which might help with increasing blood count ?
ReplyDeleteI haven't tried them myself but I think some patients undergoing chemo were talking about them.
All the best to you and your wife!
Stable contrast enhancement is not necessarily an indication of residual tumor, nor an indicator that the chemo is not working. It is fairly likely just damage to vasculature/dead cells/etc. So using the MRI to decide on the chemo plan is a little tough.
ReplyDeleteBased on the # of rounds already, it does seem likely that they will want to stop now which may be a good choice since a totally suppressed immune system from excess chemo is not going to help much.
But if continuing is the plan, then maybe staggering or fully alternating CCNU and TMZ would be sensible. Take tmz, wait 2-3weeks, take ccnu.
I do not agree with the alternate proposal. Thrombopenia is THE toxicity of TMZ/CCNU and of both of them separately, and if one continues further it will become more and more a problem ! One should evaluate this toxicity versus the evaluation of the residual contrast enhancement which is indeed not necessary active tumor anymore. If you can only do the chemo every 10 weeks, one can question whether this is usefull as such.
ReplyDeleteAgree that both damage platelets about equally (though 100mg tmz maybe more so than 50mg ccnu since that is larger drop in std dosage) and that on top of it CCNU can be even harder on lymphocytes. Doing them both at the same time poses the highest risk. So my suggestion of staggering was mostly about having time to monitor counts for the sake of safety. Though maybe 2 weeks is too short.
ReplyDeleteIn general it does seem like the risks are outweighing the benefits, but if there is a push to continue chemo, that is where I was suggesting staggering it or completely alternating (ie 4 wk tmz cycle, 6wk ccnu) could be safer.
I have also thought of an alternation between complete TMZ and CCNU cycles (4 weeks, 6 weeks). This would be much harder for the tumor to develop resistance to compared to single agent treatment, as they have differing mechanisms of action (even though they are both alkylating agents). I don't know anyone who has tried this though.
DeleteVery interesting idea. Damage to blood counts will also be less ...
DeleteDo you mean to alternate between TMZ and CCNU or between TMZ and CCNU + TMZ?
My idea was alternating between TMZ alone and CCNU alone. In other words, 5 days of TMZ, 23 days of rest, 1 day CCNU, 41 days rest, 5 days TMZ, etc. Not sure if that would be as effective as the CeTeG regimen, but might be more tolerable.
DeleteWe had the appointment today. I had the same thoughts regarding effectiveness with respect to the long cycles / lower CCNU dose and was expecting a recommendation for a pause.
ReplyDeleteTo the contrary, the oncologist recommended to proceed at the lower dose regime and thinks that the therapy should be effective even at the lower dose and longer cycles (which might be shortened, in case blood measures stay as good as they were today). She was ok with the development of blood measures, especially considering that my wife is in very good shape otherwise.
We did not discuss the alternating schedule, thanks for the idea/discussion on this. I will ask her next time. I think we will decide case by case how to proceed.
Malte, at what time does your oncologist recommend taking CCNU and TMZ?
DeleteThank you for sharing. How have your scans been since you started?
ReplyDeleteThe scans did not really change. Stable contrast enhancement at one side of the resection area. Our neuroradiologists think there is minimal shrinkage of the enhancement area during the past 2-3 months, while a 2nd neurosurgeon (regularly consulted for 2nd opinion) thinks there is very marginal progression since last summer.
ReplyDelete