Newbie here..

tamayles · Posted: Tue Aug 07, 2007 7:05 am Post subject: Newbie here..

Where to start? At the beginning I guess. It all started 11 June 2007, less than 2 months ago. This could be a long one!!

My Dad was sick for a few days, he had a bad headache, nausea, etc, thought he just had a bug, then when it didn't get better after a couple of days, we thought maybe a migraine. Took him to the hospital on the third day of not feeling well. His blood pressure was through the roof, and was sent home after a jab in the bum to stop nausea and pain. It settled down, but the headache was still bothering him.

Finally went to the doctor about 10 days later of not being about to shake the headache. He was put on medication for his blood pressure and a CT scan was ordered for the next day as a precaution. He had the CT scan at 10am and was sent directly to the emergency dept of a city hospital, 2 hours from home.

A brain tumor was confirmed, and surgery took place a week later where the biopsy results confirmed a GBM grade 4. He has recovered extremely well from the surgery. They were able to remove approx 80% of the tumor.

He has started radiotherapy and chemotherapy today for 6 weeks, then will have a 4 week break and then 6 month cycle of chemo 5 days on 23 days off.

He is a fit and healthy 59 year old man, with no other medical conditions.

Anyway, that's the background of where we are at, I'm still coming to terms with all of this, and don't know how I feel. My daughter is struggling, she's only 11. That's a whole new post in it's own.

I really need someone who understands what I'm going through, and I'm sure I've got that here with this forum from what I've read. Looking forward to getting to know you all. At the moment I'm looking after and worrying about everyone else.

Sorry it's so long.
Tam

brainman · Posted: Tue Aug 07, 2007 1:55 pm Post subject: Re: Newbie here..

tamayles, i am so sorry about your father's diagnosis. You have come to the right place... a sad place but the right on. My mother died of a GBM almost 9 years ago only 2 months after diagnosis. She had no long-term symptoms either. One day, she just could not coordinate the vision between her two eyes. If she covered her right eye she could see perfectly out of her left eye. However, if she tried using both eyes, she could not see anything to her left.

I to have a history of brain cancer, so when I saw her MRI scan, I knew she was in trouble. She had a very large area of enhancement that as causing a mid-line shift in her brain. The doctor's appointment was surreal. It was like hearing the same information, almost word for word, that the doctor had told me... except for grade and size and specific location.

Your story is NOT long Laughing

. Click on the link under in my signature line to see my original post about my story.

I will be thinking about and praying for you. Keep us posted.

One suggestion, go buy a note book and start keeping a medical journal. You would be surprised at how helpful it is to write all your experiences and questions can be.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

kashrel · Regular Joined: 24 Mar 2007 Posts: 25

Hi Tam

My dad has just ended his journey (Saturday 4th August)with a GBM grade 4. This is a dreadful illness and I wish you much strength over the coming months. When I read you message, it was like reading my first message to this site in early March. My dad was diagnosed 9th mArch 2007, had surgery 10th march then chemo/radio for 6 weeks. He lasted less than 5 months. he was 66 years old. Had never had an operation in his life and was fit active, healthy and highly intelligent working fulltime until the week he was diagnosed This is a very supportive place to be and a good place to ask questions. People here know what you are going through.

I wanted to respond to your comment about your daughter. I have a daughter almost 10 who found the whole experience very difficult - especially when my father was first diagnosed. I also flet that I was so drained and devastated that I couldnt give her the time and energy that she required as I too was trying to come to terms with the idea I was losing my father. She saw the counsellor at school which was great for her. We discussed death regularly and openly and I informed all my 3 children at each stage of his illness, what they could expect when they saw him and what he was able to do/not do as he degenerated.

The best thing you can do is be open and honest, cry when you need to and she will learn to be open and honest about her feelings. My daughters wrote get well cards to him and at the end the each made a goodbye poster which they decorated and put up on the wall in the hospice.

Childrens books on illness, death and dying can be very helpful for children to verify their own feelings and promote discussions and questions. Let me know if you want any recommendations

My daughter has handled his death far better than she handled the diagnosis as I feel she got to express herself throughout his illness and was prepared for his death. She is of course very sad that he has passed away.
Good luck with your dad, take care of yourself too. I wish you much strength

Warm regards
Karen
_________________
Karen
Melbourne

ksplat · Posted: Wed Aug 08, 2007 11:19 pm Post subject: Newbie here

Dear Tam, Welcome! I hope you will find support, comfort & understanding on this forum....I know I have! I have been posting since Apr. My bro (46 yrs young) has a GBM IV, since Feb this year. He is still with us, praise God. It's been a battle for him all the way through, like everyone else posting on this forum. Symptoms are different for everyone & this cancer sneaks up on most. It is the most serious form of brain cancer, not good news for any of us. All we can do is talk about it & offer love & support wherever we can. Thinking of you. Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!

"Without Faith We Have Nothing"

tamayles · Posted: Thu Aug 09, 2007 12:29 am Post subject: Re: Newbie here..

Hi all. Thanks it's good to know I've got some support here.

My daughter is finding this all difficult, and she won't talk to me about any of it. I've taken her to get some counselling so that she has someone to talk to. She wanted to go which is good, I think she finds it easier to talk to someone else as she doesn't like seeing me or my mum upset. I'm just glad that she is reaching out and not bottling it all up. It hurts a little that she won't talk to me.

What's it like for them in the end? Is it a painful end? Or do they just slowly slip away from us? I know everyone is different, and symptoms are different and reactions to treatments etc.

The thing I HATE the most about all this is all the unknowns. We don't know how he'll react to the treatment, or how effective it will be. Or how long he has. All we can do is take it one day at a time.

As the treatment is in the city Mum and Dad are away through the week coming home weekends, and that is also hard being away from them and not being able to help mum out. Though they are staying with family.

I've got so many things going around my mind, and I don't really know how to describe my feelings at this point. I'm ok until I see that my daughter isn't ok. then I fall apart and I cry at the drop of a hat and still I can't express exactly what I'm feeling. I HATE THIS!!

Tam

jenugl · Posted: Sat Aug 11, 2007 7:22 am Post subject: Re: Newbie here..

Hi Tam, I'm so sorry to hear your Dad has become another victim of what we call the BEAST. By the sounds of it you are in a similar position to me where we have to travel a long way from home for treatment. It is so hard to be away from family and friends and in your case away from your Mum and Dad. I know Andrew's family and indeed our friends found it extremely hard as we were 400km's away for his operation and 2,000 km's away for 8 weeks for radio/chemo treatment. It is so hard on kids - Andrew has a 16yr old son and I have a 13yr son and 18yr daughter. They don't fully comprehend what is going on and because from the beginning it is such a waiting game (with surgery, then is the first treatment working, then the next treatment etc) it's so hard to let them know what they keep asking - is he going to be alright and how long has he got. I'm glad your daughter is getting help and don't feel to bad that she isn't speaking to you as much. Our kids also don't like to see us upset and I think for a lot of kids they need to be able to speak to someone outside the situation who isn't emotional involved. I hope your Dad doesn't suffer too much from the treatment. My partner Andrew recovered extremely well after surgery coped quite well with radio/chemo although when he went onto the 6mth cycle of chemo they had to keep his dosage down as he was sensitive to it. The dose usually goes up quite a bit every month - second month's dose he ended up in hospital so they kept it at the first months dose for next 5mths. I have heard of mixed reactions to radio and chemo - I suppose it depends on the indivual. Your emotions do go crazy and there are up and down days, but as you said the best way to cope is to take one day at a time. My thoughts, prayers and love to you, your Dad and family. Stay in touch and let us know how you and your Dad are going. Love to all. Jen.

tamayles · Posted: Mon Aug 13, 2007 6:21 pm Post subject: Re: Newbie here..

Well so far so good. Dad started his radiotherapy and chemotherapy last Tuesday, so it's been a week now.

So far there haven't been any side effects. The doctors told him that he may be ok for the first weeks and then towards the end the accumalitive effects may kick in. But everyone is different, so it's just playing that same old game "wait and see". I don't like that game!!

Tam

phoneman · New User Joined: 15 Aug 2007 Posts: 9

everyone just joined the forum and my dad has a brain tumor as well.

he has been trough radium etc and all to no avail. so it is not looking good at this stage.

it is tough on the kids mine are OK at present so we will see how things go.

my only advice at this stage is to be open and honest with them. they will know anyway kids are very astute.
_________________
My Dad is the sufferer, Diagnosed Feb 07.
www.dadsbraintumor.com
http://brain-tumor.blogspot.com/

tamayles · Posted: Mon Sep 17, 2007 7:21 am Post subject: Re: Newbie here..

Thought I'd update on what's happening with my Dad.

Today he finished his 6 weeks of radiation and chemo. He has been extremely well through the whole thing. No illness, or feeling sick. The only thing is he gets tired and has an afternoon nap everyday and he's lost his hair (but he didn't have much to start with anyway...LOL), but he's still finding things to do to keep busy in the garden etc.

Now we wait.

He goes back to the neurosurgeon in about 3 weeks for a check up. I'm assuming they will do an MRI to see how effective the treatment has been so far.

He now has a 4 week break, and then will go on a 6 month cycle of just chemo 5 days on, 23 days off.

We are all so pleased that he has come through this far still feeling well. But it is still in the back of our minds that it could still be the calm before the storm!!

Tam

Carmella · Regular Joined: 18 Jun 2007 Posts: 12

Hi Tam

Glad to hear your dad has coped so well with the radio and chemo, that is great news. know what you mean abt the calm before the storm, its hard to relax when you are wondering what might happen. It sounds like he is making the most of every day which is the best thing to do. Hope things are ok with your daughter too.

brainman · Posted: Tue Sep 18, 2007 9:03 pm Post subject: Re: Newbie here..

Tam, good to hear that your father tolerated his treatments so well. Being tired is a normal thing due to the cancer, the chemotherapy, and the radiation therapy.

By the way, the radiation is still working to kill the cancer cells, that is why you have to wait now. I know that waiting can be extremely difficult... especially when dealing with cancer.

You and your father are still in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat · Posted: Thu Nov 01, 2007 1:20 am Post subject: How is your Dad?

Hi Tam
Just wanted to say Hi, I'm thinking of you.
How is your Dad at the moment? I hope he continued his good outcome from your last post in Sep. How far along is he with the chemo treatment?
Has he had a recent MRI?
How is your daughter coping with your Dad's illness now & most importantly how are you going a few months along from diagnosis?
We would all be interested to receive an update from you.
Thinking of you.
Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!

"Without Faith We Have Nothing"

tamayles · Posted: Fri Nov 02, 2007 2:13 am Post subject: Re: Newbie here..

Hi Angie
Thankyou for thinking of us.

Dad isn't travelling to well at the moment. He felt really good when he was having his radiation and chemo, but since then has been going down.

He had his first cycle of chemo a couple of weeks ago and it really knocked him for a sixer. He still isn't feeling very well at all, very upset in the tummy and very tired.

When he was on the chemo with the radiation he was only on 150mg for 6 weeks. This time he was on 400mg for 5 days.

He's getting very down because he's feeling so crook, not eating much because he feels so nauseus all the time. Not being able to get out and do much is also bringing him down, he's so used to being busy and on the go most of the time. It's hard seeing him down like this. My mum is really worried that he's going to turn around and say "stuff it, I'm not doing this anymore" because the treatment is making him feel so bad. But I'm sure he'll keep going.

They aren't doing another MRI until January as the Dr said even though the radiation is finished, it's still working. Hopefully the MRI will bring good news and he will feel better knowing that the treatment is working.

My daughter says that she is praying for him every night, and she seems to be coping better now, but it does upset her when she sees him not feeling well.

We are all just taking it one day at a time, and hoping that the treatment is working.

Tam

tamayles · Posted: Wed Nov 14, 2007 4:28 pm Post subject: Re: Newbie here..

Everything isn't good at the moment.

Dad started his 2nd out of 6 chemo cycles on Tuesday night. The first one mad him feel pretty awful at the end of the five days and then he was just feeling really unwell for the weeks after.

Anyway, the first night was awful, he was really sick, shaking, etc, and finally told mum to take him to the hospital. They gave him an injection of maxalon and sent him home and to see the Dr later.

The doctor told them to stop the chemo treatment, and have put him back on dexamethasone and will review him next week.

He was feeling really good when he had his chemo and radiation and now when we think of it all, he was taken off the dexamethasone just before he started the chemo cycles and he's just gone downhill fast since then.

So that poses the question as to whether he is still having swelling issues, or what else the dexamethasone was doing. He's not due for his MRI until January a couple of months away.

Dad's saying he can't go through that again, so if they put him back on the chemo and he has a similar reaction, I'm sure now he's going to chuck it all in.

Worried!!

Tam

brainman · Posted: Wed Nov 14, 2007 4:43 pm Post subject: Re: Newbie here..

Hi Tam, I very sorry that the chemo is causing so much problems for your father. I scanned your posts but could not find what type of chemotherapy he is taking. The older version is called PCV and is given in a six week cycle. That was the chemotherapy I took. It did make me very sick. Sometimes, on the 1st or 2nd day. But sometimes on the 6th or 7th day. It also caused my blood counts to go very low. I have still not totally recovered from that and it has been 14 years since my chemo ended!! But it did do its job. It took a lot out of me, but it gave me 14 more years.

Of course, your father's cancer is much more aggressive than mine was. I hope the doctors can find the best treatment options for your father.

You continue to be in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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