What now??

Hi, my partner has IV GBM (3/09). We have been through what seems like an aggressive regiment; surgey, GKS, 6wks dual radiation/chemo, and are one the 5th of a six month chemo cycle.

We have had 2 post surgey MRI's now and all looks good, smaller and stable.  The question is now the oncologist says that she will need to remain on the Temodar forever... :-(

Is this normal?  How can your body survive a constant battle indefinitely? Any input from GBM's would be greatly appreciated as there doesn't seem to be a standard of care after you get here.

Hi

Sorry it has happened in your life at all, but glad to hear that so far so good.

Based on all the accounts I've read since last January, and that is a LOT... You're right about the unknown... the doctors really don't know what will work best for each person. I bet they wish they did. The Temodar seems to work for people either for a while, for a long time until they stop taking it, or not at all. How's that for varying and unpredictable?! The doctors really can't make any promises because it seems to be that other chemical markers (the methylation, for one) make some tumors more responsive to chemo than others.  After 12 months there is no standard of care because the average survival isn't much longer than that. : ( But it's always important to note that HALF the people live longer! Some of those who live longer live MUCH longer. Youth seems to be a big plus but there are exceptions to every rule.

Those who take the Temodar for a long time often want to take a break at 6, 12, 18 months. Or lower the dosage. And the doctors seem to go along with the patient's wishes. Sometimes this seems to work out well... people just keep getting their MRI's and living life, and sometimes the tumors come back pretty quickly. There's just no saying. It's stressful, to say the least.

There are more survivors though, all the time. CHeck out www.yasg.com , read the bios and forum.

I really hope things keep going well!

Peace,

Sarah

mom of Andy age 27 dx GBM/PNET 1/09

I was unable to continue with temodat after the rads combo, but from what I have read, the standard seems to be one year of maintenance dose AT LEAST. I have read of many doing 2 years. As a 2 yr survivor just experiencing my second recurrence, I'm a believer in the "if it's working/as long as you can tolerate it" theory. If his quality of life is passable on the temodar, why not continue on as long as it's working? When it stops, he will have other options to consider. It's a scary ride, I know. I've been on it for over 2 years now; 3 surgeries, 3 different treatments. The sucker just keeps growing back, which is the nature of the beast we're fighting. I say stick with the temodar as long as it's working and he's tolerating it. Best of luck on this rocky road.

On Nov 01, 2009 3:27 AM agres141 wrote:

Hi, my partner has IV GBM (3/09). We have been through what seems like an aggressive regiment; surgey, GKS, 6wks dual radiation/chemo, and are one the 5th of a six month chemo cycle.

We have had 2 post surgey MRI's now and all looks good, smaller and stable.  The question is now the oncologist says that she will need to remain on the Temodar forever... :-(

Is this normal?  How can your body survive a constant battle indefinitely? Any input from GBM's would be greatly appreciated as there doesn't seem to be a standard of care after you get here.

So sorry that you, too, have joined this club.  It is not an easy road but can be endured and there truly is hope out there. As Heart and Soul said, there are longterm survivors so keep the faith.

It is my understanding that being on Temodar for a lengthy time period can produce leukemia in patients.  I have heard of patients who have been on Temodar for years and, so far, have had not leukemia presented.  This is just food for thought. Some patients would prefer to take that risk in order to keep the GBM at bay.

Your partner is lucky to have you! Take care of yourself, as well. We cannot do our job as caregivers if we do not stop every now and then.

Husband dx GBM IV Feb. '09

What a roller coaster you have been on for the past 8 months!  My MIL was diagnosed 09/08 with GBM.  She was able to have the tumor completely removed....other than the tentacles that are not visible.  She had radiation and 11 rounds of the Temodar.  Originally our NO said she could be on the Temodar up to two years.   But at the 10th month she said since there had been no regrowth she would be done with the Temodar at 12 rounds.  Unfortunately she had a small stroke recently and the NO said she didn't want her to have the 12th round due the stress on her body.   I have heard of studies that say there is no benefit to treatment with Temodar after the two year mark.  Yet it seems to me more that they say you continue on the path "until" .  Until it grows back or until your body can't take it anymore.  Since there aren't very many long term survivors and all the patients react so differently I think they are giving their best educated guess.  Now that my MIL is almost 14 months out from diagnosis and hasn't had any growth I have more hope each month.  Of course my MIL is scared to death to stop taking the chemo because her NS keeps telling us that the chemo is "keeping the cancer at bay."  WOW!  It has helped us to learn to enjoy every moment we get with my MIL.  It was very hard in the begining but I had to constantly tell myself: "My MIL is here today.  She is alive today and we have to enjoy it.  We don't know what the future holds or when the cancer will come back but today there is no cancer and today she can love her Grandkids and make memories to last a lifetime." And yes it seems once you have been diagnosed with GBM the rest of your life is a battle but it's worth the fight.

Hang in there and stay strong.

Peggy

I have been very lucky in comparison to most. My tumor(s) were on the right occipital lobe--close to the scalp and easier to remove surgically than most.  My skin has been stretched about as much as it can be after two operations in less than 6 months, but I am otherwise not much worse for wear. Left eye vision is worse, gait is worse on left side worse, but overall okay except for fatigue. My last tumor was about the size of a grape. I've just entered a Phase 2 trial of Azixa, a blood blocker much like Avastin that Myriad pharm. is trying to get approved. It has proven in early trials to have a wide efficacy and because it can cross the blood/brain barrier, they believe it will have success with GBM. One other gentleman in the trial at my hospital has improved considerably  since starting it a few months ago. He was barely able to walk, incontinent, etc and can now take care of himself. The trial is being offered at many hospitals around the country. You may ask your doctor to look into it. You have to qualify, of course, but you can check that out on virtualtrials.com . I'm sorry your husbandd's tumor is so large. Was it large when first diagnosed?

Hi so sorry you have to join the club... My sons 1 year anniversary is 11/05/08 (surgery day) he did 6 months of treatment Radiation,Temodar,Avastin.CK up MRI 10/1 showed regrowth after a 4 month break. He is currently on Temodar 100mg daily now ,no side effects..We go back on 11/9 for another MRI on 11/10 see NO at that time we will see if there was more growth, plan another surgery, or up the Chemo/Avastin..his NO did mention another Chemo but I went into a twilight zone at last visit..

I say stay on some form of Chemo,this time around were doing it differently and if my son has to stay on chemo forever than he will or until they find something that stops this.

Best to you both!

Love and Prayers to all the site.

Diana   my son Chris dx gbm 11/08