Newbie here..

In · Posted: Wed Nov 14, 2007 4:56 pm Post subject: Re: Newbie here..

Hi Tam, I'm sorry your dad is having such a hard time with the chemo. Maybe talk to the specialist and explain why your worried he will throw it all in, if he is so sick. maybe they can get him on something before and while on chemo to help...?

I hope things go better after you see the Doctor, let us know what happens.
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tamayles · Posted: Wed Nov 14, 2007 5:06 pm Post subject: Re: Newbie here..

He is on Temodar.

The first treatment was 150mg over 6 weeks with the radiation.

His chemo only cycles are currently 400mg over 5 days

Tam

In · Posted: Wed Nov 14, 2007 5:19 pm Post subject: Re: Newbie here..

Tam I'm really quite hopless when it comes to medications etc. (and many other things Wink

)

Hopefully others will talk to you about that kind of stuff. I just want you to know- we are here and thinking of you. Ask us many questions and there is always someone with an idea etc.

thinking of you.
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mp · New User Joined: 05 Oct 2007 Posts: 6 Location: KY

Tam, sorry to hear all you all are going through. My husband is also taking temador (5/23). His doctor also gives him zofran for nausea. The one thing I have seen on here, is it seems, most patients are taking all their daily dose at one time.(bedtime). I am not sure why, but my husband takes 160 mg in morning and another at nite. Not sure this will help you any. He may also need to see his primary doctor. Hubby had terribly time last month, and found out it wasn't the chemo, it was gallstones. Had that taken out, and thing are good again. He was dx 5/11/07. gbmIV.
also, you may ask doctor for phenegran

Pat, dx

jenugl · Posted: Thu Nov 15, 2007 6:22 am Post subject: Re: Newbie here..

Hi Tam, so sorry to hear that your father isn't coping that well with treatment. As I posted earlier in this thread my partnerr was sensitive to Temodar so they kept his dose down at 240mg (I think) for the whole 6mths and he only suffered slight nausea with this. When they tried to up the dose he reacted very badly and ended up in hospital. He used to have his Zofran at 5:30am then at 6am have Temodar and then wait an hour and then have breakfast. They told us this was what they thought the best way to let the medication work and also try to keep nausea down. We did ask the oncologist if having this lower dose would affect the way the treatment worked and she said it shouldn't make too much of a difference. He is still showing clear MRIs so it must have worked for him (so far). Everyone is different and it is so hard to see someone you love being so sick. My thoughts are with you, your father and family. Jen.

tamayles · Posted: Thu Nov 15, 2007 10:01 pm Post subject: Re: Newbie here..

Jen, I've sent you a PM I would really love to chat with you about your parters experience.

Dad has announce he's not doing it anymore. Doesn't want any treatment, cancel my appointments and make one for an MRI.

I think if he could have an MRI very soon and see if there is some improvement it might change his mind about not continuing treatment,

He see's his Oncologist on Thurs 22 Nov. Hopefully they can reduce his dose and see how he goes. He was absolutely fine on 150mg wasn't until they put it up to 400mg that he got so violently ill.

We don't want to see him so ill, but he also don't want him to give up either. Hopefully the Dr's can do something for him.

Tam

In · Posted: Fri Nov 16, 2007 3:07 am Post subject: Re: Newbie here..

Good Luck with The Doctors, i hope you get the results you are after.
Fingers crossed for you all. and my prays and wishes.
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tamayles · Posted: Tue Nov 20, 2007 4:50 am Post subject: Re: Newbie here..

Just a quick update

Dad had a CT scan today and will see his Oncologist on Thursday 22nd.

He was supposed to start back on the chemo yesterday but he didn't want to until he see the Dr, which I can understand.

At least he's had a scan now and they will be able to see what's been going on and make a decision from there as to his future treatment.

I think Dad will be happy to try a lower dose of the chemo, but he has already stated he WILL NOT try going back on the 400mg.

So now we wait....AGAIN!!!

Tam

Jenugl2 · New User Joined: 20 Nov 2007 Posts: 6

Hi Tam, Jen here (in disguise Smile

) I hope everything goes well and you find some answers when you visit the Oncologist on Thursday. Glad to hear that you Dad might try and stay on a lower dose. Like I've said Andrew was kept on the lower dose for the whole 6mths and seemed to cope quite well. I will be thinking of you all. Let us know how it goes. Fingers crossed for you and your family. Love Jen.

brainman · Posted: Tue Nov 20, 2007 3:09 pm Post subject: Re: Newbie here..

Hi Tam. Glad to hear that things are progressing toward a treatment plan for your father. The problem with doing a second scan too soon is that the chemo has not had time to work to its fullest potential. In my case, I had to go for 3 months before a change was noticeable on my MRIs. By the 6th month, there was no evidence of living cancer cells.

Is your father still getting radiation therapy as well?
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tamayles · Posted: Tue Nov 20, 2007 4:26 pm Post subject: Re: Newbie here..

He has finished his radiation therapy. He did 6 weeks of it. That finished about 10 weeks ago.

ksplat · Posted: Wed Nov 21, 2007 6:30 pm Post subject: Re: Newbie here..

Hi Tam
I just wanted to let you know I'm thinking of your Dad & family today. It's Thurs & he will be seeing his Dr for a follow up.
I have "everything" crossed for a positive outcome.
It's been really tough for you-I know! Especially with your Dad so "down" about his illness & treatment.
Keep your chin up, & keep the communication open with us here on the forum. We are here to support & comfort you.
Cheers, Aussie Angie.
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tamayles · Posted: Thu Nov 22, 2007 4:24 am Post subject: Re: Newbie here..

well the CT Scan didn't seem to show any sign of the tumor, it said alot of other things that I really didn't understand.

So, Dad has stopped any further chemo. He won't take it anymore.

The Dr said there was no point in taking a lower dose, so Dad said he's not taking any.

I've got no idea what this means. Even though there is no visible tumor at this point doesn't mean there aren't any active cancer cells........Is this correct?

What happens from here, who knows. Without chemo, will the tumor grow back? If that happens, where do we go from there? If it comes back does that mean it's too late?

It's been such an overwhelming day today. I've had problems of my own and then this on top of it. I'm completely drained and emotionally exhausted.

Tam

jenugl · Posted: Thu Nov 22, 2007 7:28 am Post subject: Re: Newbie here..

Hi Tam, I'm sorry youv'e had such a rough day. Did the Dr say why they thought there was no point in having a lower dose? As you know Andrew shows a clear MRI and we were told that chemo treatment is done to try and keep cancer cells dormant for as long as possible and because his body couldn't cope with the high dose of Temdor his Dr put him on a low dose. I don't know why your fathers Dr said this. The decision to have treatment or not is up to your father I just hope that his Dr hasn't given him bad advice. Each case is different so I am only telling you what was best in Andrews case. I know its hard but you really need to support your dad and his decision. I would be torn if Andrew had decided to not go with the treatment as I think I would feel like he wasn't fighting this thing as hard as he could but I told him and no matter how hard it is I would go with whatever he decided. This is such a cruel disease and nobody should have to go through this. Please take your frustrations, sorrow, anger and any feelings you are having and put them into words. We are all here to help / listen as well as the therapeutic benefits of writing down your feelings. I am thinking of you and send you my love and support.
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tamayles · Posted: Sat Nov 24, 2007 9:44 pm Post subject: Re: Newbie here..

Hi jen

Apparently the Dr said that chemo doses are worked out on the persons height and weight, and that he couldn't have a lower dose.

I've actually been thinking that Dad may have a stomach ulcer as he's still having trouble with pains etc in his tummy.

Could that be why the chemo has affected him so badly? Just a thought.

Was thinking if that's the case if he got that cleared up then the chemo may not effect him so violently. Again just thinking out aloud.

Anyway, he won't take the chemo, and it's his decision, we just have to get with the program I guess.

Tam

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