Stopping Temodar

My husband, GMB 5/09 has decided to stop taking his temodar, he had the 42 days with the radiation, then ONE cycle@ 350, then this month it was increased to 450 and he forgot to take his nausia pill and got really, really sick.  He's blaming the doctor, thinks he overdosed him, even thu i tried to explain to him it is increased.

He did well with the 350, and the Oncologist said he could continue with the 350 instead of 450, but it doesn't make a difference to him.  He WILL NOT take anymore, he thinks the Oncologist made a mistake and he just will not take it.

What can I expect with him not taking temodar???  I know it slows or stops the growth, but  now what?  Is one month without it going to affect him??  It seems like he's just gonna give up because meds have strong effects on him.

Please tell him to take the zofran an hour before, then the Temodar at bedtime. If he needs some Ambien or some anti-anxiety med like Ativan to help him relax, it would be soooo worth it. I don't think he'll be messed up by skipping one night but you really don't want him to quit altogether... this is one of the mildest chemo drugs and it is proven to really do some good. My son took 390 mgs 5 nights in a row then 23 days off, and he only weighs 155 lbs... he wasn't nauseous as long as he did the schedule above AND had plenty of food in the tummy to buffer the meds. A little marijuana helps too... if you're willing to give that a try.

Wishing you lots of luck and hope and love ~
Sarah

I definitely agree with taking the Zofran an hour before, and copious amounts of ginger tea, too.   Stopping the Temodar is a very big decision with big ramifications.  It sounds like he could use some support, and perhaps he would be willing to see a therapist who deals with cancer patients.   I can only imagine how terrible it feels to be nauseous and fatigued all the time, but the Temodar is so necessary.   I would try everything possible to encourage him to take it, and let him know you'll work with him to try to make the experience as comfortable as it can possibly be.    I go through this, too, in a way, with my husband who HATED his vaccine injections, but I just kept emphasising and refocusing him on the fact that it could help him.   This is really hard, to say the least.  The treatments are sometimes as brutal as the disease.  

Hang in there.  

 OMH

My husband started with 1 8mg Zofran before each high dose temodar (400mg).  After several rounds he became more nauseous with each round and gradually he worked up to 16mg at night and 8mg the next morning.

Also although my husband thought he could manage his own medications, he could not.  Especially on chemo days I handled all his meds and kept him on a strict schedule.  

Not to scare you but if your husband stops the Temodar the tumor will most likely start to grow within a short period of time.  Will your husband consider any alternatives such as Avastin which is fairly well tolerated as is the Temodar.

It also could be that your husband is overreacting to the setback because of the tumor, radiation, edema and decadron. These guys don't think straight and sometimes have a hard time dealing with any discomfort.  There are times you have to step in and just tell him what he has to do or else he will die sooner than he would normally.

Good luck and take care,

JMB

I wholeheartedly agree with the other posters. I doesn't get any easier than temodar.  The zofran an hour before the temodar at night should work. If you didn't get that instruction from your doctors you're in the wrong place. And if he now distrusts his doctors you may have to seek a new one to get him back in treatment. Untreated, GBM comes back. (even with treatment it comes back--I just had my third surgery). It's just the reality of the beast. We can sugarcoat it all we like to help us sleep at night, but the reality is it will return, particularly untreated.

I've been fighting this tooth and nail for over 2 years now. I'm not ready to die. I've got people to take care of.  I've had about 30 Avastin/CPT-11 infusions, radiation/temodar, 3 craniotomies in 2 years and I get out of bed every morning to take care of my family. He needs to know that he can have a good quality of life while undergoing treatment. There are so many meds available to alleviate nausea, pain, neuropaathy, anxiety etc.

I feel for you. You must be so frustrated. Is there anyone else he trusts who can talk to him about this?A friend, a brother? Sometimes the closest person (you) is the farthest away. Best of luck to you. I sincerely hope you can change his mind.

Thank you all very much for your helpful responses.  I'm still at him to take it, and Im calling his family to talk to him too. 

He's always been a guy who sees the bad side of everything, and I've always had to 'pick up' his spirits and encourage him all the time, even before his cancer.  Usually cancer patients want to fight and think positive, but thats not him, never was, he gives up on stuff very easy.  I'm trying my best!!

He was suppose to take the rx starting 10/13 for five days, but took only 1 dose but forgot the zofran and thats why he got so sick.  I tried to explain that to him and that the temodar is the only thing that will help the tumor growth.

I'll keep you posted.

On 10/20/2009 donisrose wrote:

Thank you all very much for your helpful responses.  I'm still at him to take it, and Im calling his family to talk to him too. 

He's always been a guy who sees the bad side of everything, and I've always had to 'pick up' his spirits and encourage him all the time, even before his cancer.  Usually cancer patients want to fight and think positive, but thats not him, never was, he gives up on stuff very easy.  I'm trying my best!!

He was suppose to take the rx starting 10/13 for five days, but took only 1 dose but forgot the zofran and thats why he got so sick.  I tried to explain that to him and that the temodar is the only thing that will help the tumor growth.

I'll keep you posted.

 

 

Donisrose,

You must be exhausted! Before my husband's diagnosis (2/09), he was a fairly negative guy -- always waiting for something to happen and, I like you, have been the positive, upbeat one in the marriage. Once that something did happen (the GBM), he has become quite the fighter and optimistic.  I am hoping that your husband will come around -- this is just too much for you to have to do on your own. I hope you have help and that you have a sounding board for yourself. Please try to take some time for yourself --  you will find that you can deal with your husband better.

Cancer sucks!

Holly