5/23 schedule, for how long?

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5/23 schedule, for how long?

by Snowdr on Sat May 17, 2014 03:45 AM

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I've read many times that patients taking temozolomide on the 5/23 schedule usually do so for 6-12 months. But read some have been on it longer. Are there any studies or something for me to read on this? Dr said same thing 6-12 months but I didn't ask what determines it. Melanie

RE: 5/23 schedule, for how long?

by Dodgerblue on Sat May 17, 2014 12:20 PM

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I know a gentleman that has been on 5/23 for 8 years with GBM!  The whole, "if ain't broke, don't fix it" theory as he has been recurrent free entire time.  My NO, also told me 6-12 months.  He said in the U.S. they have generally done 12 months, but Canada and Europe have done 6 months and studies have shown 12 is no better than 6.  I'm not the biggest fan of poisoning myself, so I'm leaning toward 6 myself, but we'll see.

Dodger

RE: 5/23 schedule, for how long?

by Snowdr on Sat May 17, 2014 12:54 PM

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It really is a catch 22 than isn't it!  I imagine some feel their tumors returned not long after they quit the 5/23 schedule. Some feel the poison isn't worth the risk and others are just tired of the side effects.

The guys on for 8 year must truely feel he doesn't dare stop.

We are in a rural state (ND) and have only met 2 others at the cancer center with GBM.  One had a tumor removed Feb 2013 at Mayo, it reoccured in October and he was gone before the 1 yr mark.  The other guy has been dealing with this over 3 years, doing well and has had several small reoccurances that he has had surgery on.

We personally know one other family dealing with a GBM, but he didn't do well on the standard treatment so went avastin route and then avastin/temo.

For something so uncommon funny how you all the sudden start hearing about it. My small town of 900 my mom can name 3 guys she knew in the past 15 years. Where i live now - one teachers brother 10+ yrs ago,another teachers 2 aunts - not sure how long, a principals brother in law 7-8 yrs ago and an aides mother.  That was about 15 yrs ago but she was in her early 80's and no treatment.  Sadly -none of those people survived even 2 years. One other local guy I never met that died last fall - only 15 months survivorship.

Why does this have to be sooo grim. Sad when you wish for an grade 3 vs 4!

My DH finished his 4th round of 5/23 last night.  He tossed and turned for several hours. Two weeks of every month seem to be crappy - makes a person wonder if 50% of your time is like this................ with no promises, is it worth it.  In my DH's (dear hubby) case - his tumor was left temporal so speech and language are affected - sadly it gets to the point of 30-40% of words are incorrect during Chemo week. Frustrating for everyone.

I hope other join in here and post their comments on the 5/23 schedule. Take care - have a great weekend all.

Melanie

ND

RE: 5/23 schedule, for how long?

by JenniferONeal on Sat May 17, 2014 02:36 PM

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On May 17, 2014 3:45 AM Snowdr wrote:

I've read many times that patients taking temozolomide on the 5/23 schedule usually do so for 6-12 months. But read some have been on it longer. Are there any studies or something for me to read on this? Dr said same thing 6-12 months but I didn't ask what determines it. Melanie

Hi Melanie, So sorry to hear that Temodar is giving your husband so much trouble.  We were in the same situation over a year ago when Patrick was on the 5/23 schedule.  Two weeks he spent on the couch and the other two he would slowly start to feel well enough for the next round.  After two rounds his MRI showed a big change and we went to Avastin but it wasn't until over a half a year later that the NO decided it was pseudoprogression, not tumor growth.  In the end, without a biopsy, they really don't know.  As time goes on between necrosis, damage from chemo, radiation, and now 2 resections, our surgeon told us that scans become progressively harder to interpret.  Here we are now coming up on 20 months and he's starting his third month on the lower daily dose of 100mg per day.  It has really been tolerated so much better for him.  He gets a little tired but is still working and managing to get to kids events, etc.  We were told that some people do better on the 5/23 schedule and some on the metronomic schedule -- whether one works better than the other I don't know.  We were told he would take it as long as it's working or get to one year and then reassess.  I think Cheryl Broyles has taken it for a couple of years at a time in her 13 (?) year journey.  Each day is a gift and we don't take anything for granted.

RE: 5/23 schedule, for how long?

by fierceoptimism on Sat May 17, 2014 05:01 PM

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On May 17, 2014 12:54 PM Snowdr wrote:

It really is a catch 22 than isn't it!  I imagine some feel their tumors returned not long after they quit the 5/23 schedule. Some feel the poison isn't worth the risk and others are just tired of the side effects.

The guys on for 8 year must truely feel he doesn't dare stop.

We are in a rural state (ND) and have only met 2 others at the cancer center with GBM.  One had a tumor removed Feb 2013 at Mayo, it reoccured in October and he was gone before the 1 yr mark.  The other guy has been dealing with this over 3 years, doing well and has had several small reoccurances that he has had surgery on.

We personally know one other family dealing with a GBM, but he didn't do well on the standard treatment so went avastin route and then avastin/temo.

For something so uncommon funny how you all the sudden start hearing about it. My small town of 900 my mom can name 3 guys she knew in the past 15 years. Where i live now - one teachers brother 10+ yrs ago,another teachers 2 aunts - not sure how long, a principals brother in law 7-8 yrs ago and an aides mother.  That was about 15 yrs ago but she was in her early 80's and no treatment.  Sadly -none of those people survived even 2 years. One other local guy I never met that died last fall - only 15 months survivorship.

Why does this have to be sooo grim. Sad when you wish for an grade 3 vs 4!

My DH finished his 4th round of 5/23 last night.  He tossed and turned for several hours. Two weeks of every month seem to be crappy - makes a person wonder if 50% of your time is like this................ with no promises, is it worth it.  In my DH's (dear hubby) case - his tumor was left temporal so speech and language are affected - sadly it gets to the point of 30-40% of words are incorrect during Chemo week. Frustrating for everyone.

I hope other join in here and post their comments on the 5/23 schedule. Take care - have a great weekend all.

Melanie

ND

Following the radiation and temodar six-week schedule, I have been on a 5/28 schedule for 11 months now. I thought that I had one more month, but I will now take it for 13 more months (for a total of 24). This is because I had a second surgery a couple of weeks ago for what turned out to be psuedoprogression, so we now have a bit of proof that the temodar is doing what we want it to. My original tumor tested as "methylate," which we know works better with the temodar. I was looking forward to finishing the temodar, but now I guess I'd rather risk it and deal with the fatigue now that I know the little ninja capsules are doing their job. 

RE: 5/23 schedule, for how long?

by geetee on Sat May 17, 2014 05:15 PM

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For my wife, we too were told that it would be six to twelve months, but now that we are into the cycle (just finished the fourth) he is saying it will be six months.  After that is anybody's guess.

For what it's worth, I'll add two cents to the whole issue of reading and interpreting MRI's.  We had an MRI in mid April and were told that it looks like the tumor is continuing to advance.  The doctor then sent us to another hospital for a slightly different MRI, with different "views" (took about an hour) and had it read by a radiologist who is also a specialist in brain cancer.  His conclusion is that it is shrinking.

So please people dont' freak (like I did) at the first reading.  Remember that - as someone said in another post - it is as much art as it is science.

RE: 5/23 schedule, for how long?

by fierceoptimism on Sat May 17, 2014 05:22 PM

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On May 17, 2014 12:54 PM Snowdr wrote:

It really is a catch 22 than isn't it!  I imagine some feel their tumors returned not long after they quit the 5/23 schedule. Some feel the poison isn't worth the risk and others are just tired of the side effects.

The guys on for 8 year must truely feel he doesn't dare stop.

We are in a rural state (ND) and have only met 2 others at the cancer center with GBM.  One had a tumor removed Feb 2013 at Mayo, it reoccured in October and he was gone before the 1 yr mark.  The other guy has been dealing with this over 3 years, doing well and has had several small reoccurances that he has had surgery on.

We personally know one other family dealing with a GBM, but he didn't do well on the standard treatment so went avastin route and then avastin/temo.

For something so uncommon funny how you all the sudden start hearing about it. My small town of 900 my mom can name 3 guys she knew in the past 15 years. Where i live now - one teachers brother 10+ yrs ago,another teachers 2 aunts - not sure how long, a principals brother in law 7-8 yrs ago and an aides mother.  That was about 15 yrs ago but she was in her early 80's and no treatment.  Sadly -none of those people survived even 2 years. One other local guy I never met that died last fall - only 15 months survivorship.

Why does this have to be sooo grim. Sad when you wish for an grade 3 vs 4!

My DH finished his 4th round of 5/23 last night.  He tossed and turned for several hours. Two weeks of every month seem to be crappy - makes a person wonder if 50% of your time is like this................ with no promises, is it worth it.  In my DH's (dear hubby) case - his tumor was left temporal so speech and language are affected - sadly it gets to the point of 30-40% of words are incorrect during Chemo week. Frustrating for everyone.

I hope other join in here and post their comments on the 5/23 schedule. Take care - have a great weekend all.

Melanie

ND

Can I add, please, that him being tired and losing words is of course frustrating. 

However: he is ALIVE. It might be more frustrating for everyone if he was dead or dying. It's an inconvenience to help him find words, but probably worth it. 

RE: 5/23 schedule, for how long?

by jon4156 on Sun May 18, 2014 03:52 AM

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The only clinical study performed to determine the maximum duration of effectiveness for Temodar lost funding six months into the trial.  So six months became the defacto standard for maximum use of Temodar.  For the most part there is very little gray in medical science.  It is primarily black and white.  If there is no acceptable study showing that Temodar works any better if it is taken for 12 months then it is simply an unproven theory.

Most doctors and medical institutions will not stray very far "out of the box" to experiment on you for fear of you suing them when things don't go right.  So some doctors follow accepted practice strictly and only provide Temodar for six months because when challenged they can always fall back on this one clinical trial as evidence that they acted appropriately.

Over time, "experimentation" by doctors (not clinical trial) has shown few negative effects of expanding 5/23 Temodar use to 12 and 24 months.  The NO at Mass General in Boston that we use for second opinions told me that 48% of doctors prescribe Temodar for 12 months, 48% prescribe it for 24 months, and the rest prescribe for less than 12 or more than 24.

So the length of time you or your loved one is on Temodar is primarily determined by the comfort level of your own doctor.  Temodar use can lead to leukemia which is one reason most doctors will not allow a patient on the drug for more than 24 months and why you get a blood test every month when you are on Temodar.

The bottom line from a medical perspective is that nobody can definitively state using Temodar for more than six months is any better than limiting it to six months, because there is no official study showing that to be true.

 

RE: 5/23 schedule, for how long?

by johngiustino on Tue May 20, 2014 03:29 AM

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You will never find an answer to your question.  People have their own experiences and doctors have their own opinions.

For me 12 months was recommended by my doctor and that was enough for me.  I hated being nauseous and tired. My first recurrence was ~2 years after stopping.  My recurrence was very manageable surgically and did not stray from my original surgical cavity (right temporal). After my recurrence my doctor said Temador was a possibly a good option because it seemed to work well for me the first time around.  I opted not to take it because it would have disqualified me from promising clinical trials (I am on my second trial now).

Balance your quality of life with the choice. See how you handle it for the first 6-12 months then decide.  Have frequent MRIs every 2 months or less to see how you are doing (very important no matter what).  My thoughts: You will never know if you made the right choice or not.  You can't beat yourself up over any choice you made if the outcome is not what you want.  It is a difficult and upredictable disease that has different course for everyone. Make sure you have a plan in case of a recurrence.  Research the standard options and consider clinical trials.

Sorry I rambled,

JG

RE: 5/23 schedule, for how long?

by Snowdr on Tue May 20, 2014 12:49 PM

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They did two tests during the MRI last week, w and w/o contrast and 3D thin slices. It took an hour as well. Of course, my questions all pertain to the report in hand and it's hard to wait a whole week to hear how the Dr's intrepret everything. TOMORROW! I think the scary part is if there are changes they really are unsure often times what is causing the change. I'll keep everyone posted. Melanie
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