Temodar beyond 12 months

35 Posts | Page(s): 1 2 3 4  Next 

bernadettep bernadettep
(Inactive)

Temodar beyond 12 months

by bernadettep on Tue Aug 14, 2012 11:21 PM

Quote | Reply
We just had our MRI appointment results today and Praise God it is clear still. My husband has his last 5/23 temodar this week, the twelfth round. Our NO suggested that he consider continuing on the 5/23 schedule for ''a while" since he tolerates it pretty well. No real clinical evidence to support this, I believe. I think the theory is that if one hasn't had a recurrence yet than the chemo is working(?). I don't think the chemo is the only factor as there are so many variables. Has anyone else been on longer than the 12 months? What do you think are the pros and cons? Thanks! Bernadette

RE: Temodar beyond 12 months

by siblingof on Wed Aug 15, 2012 01:12 AM

Quote | Reply
We were on it for 19 months without ill effect. We had an MRI today too, and were left with nothing to praise God for, so we are off the Temodar now.

RE: Temodar beyond 12 months

by mollie924 on Wed Aug 15, 2012 01:51 AM

Quote | Reply

Our NO suggested the same thing when my husband finished his temodar in May but my husband wanted a break from the chemo.  Another opinion we got from a NO in Boston was to have MRI every 2 months and if there are any signs of recurrence then temodar can be re started.  For now I think we will go with the second opinion.  Would also like to hear from others who were given that recommendation from their NO and if they followed it.

RE: Temodar beyond 12 months

by Cristiana on Wed Aug 15, 2012 03:20 AM

Quote | Reply

we had 16 months in a row, then stoped for 3 months and had a recurrence, back to temodar, everything wonderful , when stopped, another recurrence, back again !

Temodar can work wonders for some people,fingers crossed here hoping it will work again !

best to you all

Cris

RE: Temodar beyond 12 months

by Ducks-n-Row on Wed Aug 15, 2012 11:51 AM

Quote | Reply

Bernadette,

I had taken Temodar for two years. It was the 5/23 cycle of 460mg. My No said take as long as I can and also if my body tolerated. At the end I was exhausted and that was all I can handle as it was sucking the energy out of me plus the feeling of walking in a constant "fog". Any hoot that followed by 8 weeks of radiation. None of are alike and the meds will have different effects as we are all unique. Hope this gives you a little insight.

HOPE!

Damon

Dx Nov 07....No regrets

RE: Temodar beyond 12 months

by huxley2006 on Wed Aug 15, 2012 03:20 PM

Quote | Reply

Nothing has been proven beyond the 6 month time frame. Think that was the Stubbs study. I think they take "if it ain't broke, don't fix it" philosophy with Temador.

I stopped after 14 months. My original tumor was in a  very safe area of the brain which played a role in my decision. Worse case always can go in for another surgery and try a clinical. Thus far been off it about 6 months or so. Had a scare few months ago but everything appears stable.

Hux.

 

RE: Temodar beyond 12 months

by mgreggsmith on Wed Aug 15, 2012 10:23 PM

Quote | Reply

I was diagnosed with a grade IV glioblastoma multiforme in October 2006.  I had surgery and then the normal course of radiation.  I then began taking Temodar in early 2007.  I have been on Temodar for more than five years and all 4-month MRIs have been clear.

I recently asked my neuro-oncologist about stopping the Temodar, since it is an annoyance.  He said it is up to me.  He said all we know at this point is that something is working - so don't mess with it.  He declines to make the decision to stop Temodar.  I suspect that is because if the tumor reactivates, he will be blamed.  (He didn't say that.)

There is no right answer.  There is so little known about grade IV GBMs that docs have a hard time advising.  Every situation is different.

If I stop Temodar and the tumor reactivates, I can have brain surgery again but every surgery takes a heavy toll.

So flip a coin.

RE: Temodar beyond 12 months

by jdykllr on Wed Aug 15, 2012 10:30 PM

Quote | Reply

My husband was on Temodar along with Radiation treatments and his 1st round of treatment didn't work. MRI on May 30th... The Doctor said the Swelling in his brain had gone down but the cancer is back & he said that's not good.  So his Neuro-Oncologist at UW Medical told him NO more Temodar because it wasn't working for him. So he puts him on Avastin & Carboplatin. MRI on July 11 came out good & the treatment is working. He will be going for another MRI next week August 23 at UW Medical & followup with his Oncologist up there on the same day. Praying for good news.

Judy

RE: Temodar beyond 12 months

by jon4156 on Thu Aug 16, 2012 12:45 AM

Quote | Reply

My wife's neuro stated the opposite, the reason for stopping Temodar at 12 months was because without recurrence there was no way to tell if the cancer was in remission or if the Temodar was keeping the cancer from returning.  Because Temodar is expensive and there's no concrete evidence that it is effective beyond 6 months, her neuro takes patients off at 12 months and monitors with MRI every two months.  We got the exact same recommendation as a second opinion from a neuro at MGH in Boston.

My wife was tolerating the Temodar pretty well but was also ready to come off of it, wanting a break.  Luckily for her the 12 month limit imposed by her Neuro coincided with the exact time she told me she was getting tired of it.  She stopped in June/12 and will have her first two month checkup in two weeks.

It seems either way, stopping or continuing, is a reasonable approach.  Of course, to continue you need a neuro that will keep prescribing the drug and insurance that will keep paying for it.

 

RE: Temodar beyond 12 months

by mgreggsmith on Thu Aug 16, 2012 02:13 AM

Quote | Reply

I hear you.  Different neuro-oncologists have different experience and opinions.  As I wrote, my doc said: "If it is working, don't mess with it."  That is one opinion.

There is so little clinical experience that you just have to make a personal decision.  If I stay on Temodar, will that prevent a tumor from returning?  They don't know.  If I stop Temodar, with that allow a tumor to recur?  They don't know.

You just have to make a personal decision and hope for the best.

35 Posts | Page(s): 1 2 3 4  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.