Temozolomide (Temodol) Worth taking with the side effects???

louisecat

Hi
My dad has started his 2nd treatment of Temozolomide last Friday and it has knocked him out. He sleeps nearly all of the time. When he is not asleep he is very depressed and has no interest in anything. He told my sister yesterday that he'd be better off dead.
We are starting to wonder about his quality of life and whether he should quit further treatment?

He has a Glioblastoma Multiforme. He had surgery debulking last Sept 06 and then had radiotherapy & temodol Dec06 -Jan07.
Up until he started this second lot of temodol, he has had massive personality changes, aggression to those looking after him, not sleeping, eating huge amounts, swearing and anger to everything due to his frustration. Now in this last week since staring his strong Temodol he is a different person, depressed and lifeless.
We have been told thatthis treatment may give my dad an extra 3 months of life, but if there is not quality in those extra months, is there any point? Has anyone else got to this stage and decided to quit?
Any comments would be very welcome.
Louise

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Louise,
I am sorry to hear about your dad's response. At some point, my dad had a similar personality. I think part may be the midication, part may be, for my dad at least, he really was tired of the fight--not just the pain, the constant fight to just survive became too much. I don't know that we were ever able to truly decide which actions were from the disease, which were from the treatment, and which were just really his own. I wish you the best in this hard battle.
_________________
Michele

mistymoon

Hi, I can't believe how everyone so freely talks about how they feel and the things they are going through on this forum. I just found it this morning and it is great to have found a place to be able to talk about things and truely have others totally understand what you are going through.

Like yourself Louise, my husband just finished his 2nd round of temodal on April 7. I too have noticed his mood changes but I assumed it was due to the Decadron (Dexamethasone) he was also taking 4 times a day which can cause these mood changes as well as major increase in appetite which he has experienced and seems to bother him more than the fact that his tumor is back after 7 years.

After my husband finished his first treatment the 6th day he came down with the flu. I wasn't sure it was the flu but he was running a very high fever so I took him to Emergency at the Hospital and they ran a bunch of tests and it was just the flu. During our 9 hours at the hospital the Dr. that was treating Dan gave us a little info on Temodal. He informed us that it was a farely new drug (at least in Canada) probably only on the market for a year or so and that in clinical trials they had very good success with it and a patient of his had been on it and had done very well. Since we had not heard anything good or bad about this chemo med. we were quite pleased to hear this. Not sure how much you have heard or how much you have learnt over the last few months but I hope things work out well and I will pray for you and your Dad.

I am a firm believer of Prayer, Love and laughter as I truely believe that is what got us through everything the first time around.

I have read alot of the messages on this site and there is alot of sadness here but also alot of comfort. I don't know any of you but I can see that you are a wonderful caring bunch.

The first Love Story I read this morning was Chain's and my Heart goes out to him and his family. Chain, you and your family have alot of love and Love can take you a long ways.

I know some of you feel that having children made things a little difficult, and yet I am possitive they are what kept you going. Dan and I were not able to have children so I am able to put all my efforts on helping Dan, but sometimes I worry that when and if he leaves this world before me that there will not be much there to keep me going as he is my entire life. As I lost my Dad when I was 16 and my Mom while Dan was going through Chemo treatments the first time around. I'm sure I will survive but I already feel like I am going through a mourning process now, which makes me feel guilty. I try to keep my spirits up for Dan, but that can be quite difficult at times and this week seems to be one of those weeks.

Love to you all, sorry I ramble so much.
_________________
Nat

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Nat,
I'm glad to see you on the forum. I hope we get the chance to know you better.
_________________
Michele

louisecat

Well dad is now on his 3rd month of Temodol. We found out that the reason for his tiredness was due to the lower dosage in steroids (Dex), he nearly went into a coma due to the dose being dropped too low for him. His dose was increased, lowered again & stabalised and now he seems alot more bright. He is still very moody and can still be quite aggressive with us. We too feel now that he is having more side effects form teh long term useage of the Dex (steroids). However he seems a little happier. He has lost some weight which is making him feel better too. He is trying to control his eating habits a little which he hasn't tried to do before whilst being on the Dex.
He is booked in for his first MRI scan since his treatment started on 24th April so we are hoping that the results are positive, we get them on 9th May.
We had a party for my dad 2 weeks ago - I'd been planning it for months. When he was about to have his surgery in Sept 06 he told me "if i ever get out of here in working order I want a great big party" He had over 140 guests, old friends, family and army colleagues. He had a great night and told me it was the best night of his life. It was 'touch and go' due to his tiredness however he perked up alot a few days before the day. I am so pleased that we did it for him. He called it his Celebration of Life party and we also raised on the night a few hundred pounds for the charity Marie Curie who have been great support to my mum.
So things are ok at the moment, we just have all our fingers crossed for his scan results. I need to think now about planning his 70th for September which over the last year didn't think I'd have the priviledge of doing!
Louise

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