Thursday, 18 February 2016

TMZ Cycles

Hello All,

A quick question for my fellow GMB battlers,  how many cycles of maintenance TMZ did you take or are you taking?

I should be starting my 6th cycle next week (if my platelets recover) of TMZ and Veliparib (trial drug) and my NO mentioned that since the trial ends with the 6th cycle, that we might be ending TMZ as well.

My understanding was that the maintenance period of TMZ was 12 to 18 cycles.

I plan on consulting other NO's for their opinion but I value this groups opinion as well.

Thanks,

Marc

8 comments:

  1. Hi Marc!

    I´ve already passed my 20th cycle! I think deciding to cut off TMZ, when it is working, is a very though decision to be made!

    I know of some people that do not do as many cycles, because of the fear of generating new mutations. I personally think that the risk of stopping it is greater.

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  2. Hi Marc,

    I have completed 13 cycles of TMZ. Some of the factors that I considered when deciding whether or not to continue Temodar beyond 12 cycles (and in what manner):

    My NO indicated that if I were to stop TMZ for a period of 9 months to a year (and did not have a recurrence) that it was likely that TMZ would be effective again when/if needed at a future time.

    My tumor has EGFR. There is some evidence that metronomic (daily) TMZ may be more effective than 5/23 for EGFR patients.

    For me, each TMZ cycle is progressively becoming harder to tolerate than the last cycle (prolonged nausea and fatigue).

    My tumor has continued to show tiny improvements on MRI through the 12th cycle.

    My NO was equally comfortable with continuing for 12 more months, stopping completely, or changing to metronomic. Ultimately, he guided me towards staying on TMZ until the MRIs stopped showing tumor shrinkage, and then continuing TMZ for two more cycles beyond that time- which I believe is a traditional way of determining length of chemotherapy in oncology in general.

    Since my last NO visit, I have been considering having my MRIs every six weeks instead of every eight weeks (not sure what my insurance company or my NO will say). If I move to 6 week MRIs, then I will seriously consider changing my TMZ cycle to match. Meaning that I would switch from a 5/23 cycle to a "5/37" cycle. For me this approach would allow me to (hopefully) recover better between cycles while keeping on TMZ longer.

    I too, am very curious as to what others did beyond 12 cycles and how they arrived at their decision.

    Mike B

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  3. My husband will be starting his 7th cycle next week. We skipped one cycle for travel and one cycle because of a sodium deficiency. We have a friend who is a neuro-onc in Scotland who feels strongly that more than 6 months is not effective. Our UCLA neuro-onc response to me with a similiar questions was: "I think it comes down to how Greg has felt this past month being off Temodar. If he’s significantly improved, then I’d say let’s stop. But if you haven’t seen much of a change, I’d push through to complete. I’ve done this 1-month break a lot (usually at a later date though, at 9 months or 12 months – we used to give chemo for 2 years and didn’t see a difference in survival) and in the end, the choice patient makes tend to have to do with how they feel during that month break." Not sure if this info helps or just muddies the waters.

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  4. Chance had six rounds - UCSF standard procedure. The last two rounds were somewhat less than normal dosage because of intolerance. Within 60 days, he had recurrence.

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  5. My husband had 6 cycles of TMZ (that is standard in B.C. Canada)then a recurrence within 2 months of stopping. At that point he took metronomic TMZ for 2 months but the tumor continued to grow. He then had a second resection and 6 weeks later the tumor grew back. He has now had one cycle of Avastin, which is two infusions..one infusion every other week. He will have an MRI in 3 weeks. At that time they will decide if another chemo agent should be added or not.
    Jaki

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  6. My husband,had his 14 round of tmz cycle and we continuing at least untill 2 years . Now we waiting the next MRI at the begining of march...
    Melinda.

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  7. Thanks to all the reply's. They have been very helpful. I am going to get 2nd and 3rd opinions from UCLA and John Wayne centers next month
    Marc

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  8. My husband did 13 cycles that finished on May 2012, then started again in august 2015 for reoccurrence and did 6 cycles, now that a new small tumor has grown, he was placed on daily dose.

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