Hi, new here

Kris · Posted: Wed Sep 13, 2006 2:43 pm Post subject: Re: Hi, new here

Dear Chain,

All my prayers are with you and her - she'll be strong! Do you know what they plan for the post-surgery period as medication?

Unfortunately my Mum 's getting worse and worse from one day to the other, has no more energy to walk, her speech is getting worse ... only on palliative medications now it's her 54th day since diagnosis ...

I'll be glad to hear your news - God bless!

Kris

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hi All ...

Chain ... sorry I haven't stayed in touch. Been at hospital with my husband this week. I am sorry about your wife's weakened condition, and especially the loss of her sight. I hope she can come home with you soon, and that you can share more precious time together.

Although Forrest has been declared "in remission", he is going down hill. We have now been told that the radiation effects are beginning to show up. That, we have been told, takes 6 months to 2 years to occur. Neurologist says that his brain is actually starting to liquify and literally trun to water. He is not talking at all now, and is still very weak. He doesn't seem to know what we're talking about lately, or either does and can't respond. The radiation seems to have done more damage to my husband than the actualy tumor itself.

I am thinking of you and your family Chain. You are in my prayers. God bless you,
Joy

Chain · Posted: Sat Sep 16, 2006 3:10 am Post subject: Re: Hi, new here

Hi Joy..

I feared things had not been going so well from your absence.
I just wanna give you a huge hug darlin, my heart goes out to you.

what can I say.

keep your chin up , I know you will.

My baby is home from hospital but just a shell of her old self.

Joy, life gets better, try to remain as positive as you can. In time the music will sound sweeter and the food will be easier to enjoy.

all my love to you and yours, Chain.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Chain, your words touched me deeply. Thank you. Go put your arms around your sweetie and tell her that you love her. You both need that. I'm sure you do that often though. I am glad she is home with you. I hope you are both able to rest now.

Take care of you while taking care of her Hon.
God bless you ... you are a wonderful man. She and those babies of yours are blessed to have you ...
Joy

Kris · Posted: Sat Sep 23, 2006 2:34 pm Post subject: Re: Hi, new here

Dear Joy and Chain,

No news from you for a while...how are your beloved ones doing?
My Mummy is doing bad, unfortunately. Very bad.

I just wanted you to know that you are both in my prayers.

Kris

jenugl · Posted: Sun Sep 24, 2006 12:48 am Post subject: Re: Hi, new here

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Hi all, Aussie girl from QLD here. Just been reading all your posts. My 43yr partner was diagnosed in May with grade 4 gb multiforme. Don't know how long it took to grow, surgeon seems to think it was a while. Symptoms were poor eyesight (he thought he needed longer arms to read paper - he he) slight pressure on right side of head, then had odd thoughts and finally severe headache which made him go to drs who then ordered a ct scan - and wham... your whole life changes. We are classed as rural - so spent 5 days in local hospital and then flown to Townsville hospital for op. Then 4 weeks later flown to Brisy for 6 weeks of radio and temadol treatment. Last week was put on 2nd week of temadol treatment (having 5 days out of month treatment) this dose of 370mg hit him hard. Severe vomiting, severe headache with rash. In hospital for 3 nights. Oncologist tells me they will put his next dose (which starts 13/10) back to 240mg dose. He is extremely tired and spends most days sleeping - will be asking his dr about dex. as the tiredness seems to have multiplied since he stopped altogether. This disease has got to be the worst as how can you attack the brain like with other cancers so aggresively without doing too much damage. We are taking it one day at a time. Have been pretty good up until about a week ago - as he was pretty side effect free.
I hope you all are going OK. It is soo hard. Like you said Chain you try to control yourself but do feel like it is getting on top of you and feel like you are losing it.
I have only just got the internet on in the last week or so and am just finding out more and more about this. It is so sad and such a relief to know there are other people out there that are going through the same thing. BUT I would give anything for nobody to have to go through this.
Talk soon. Take care guys. Trying to keep smiling Smile

Sammict · Posted: Sun Sep 24, 2006 2:46 am Post subject: Re: Hi, new here

HI Kris, Joy, Chain & Qld girl,

My name's Sam and 3 months ago my beautiful Dad who is 58yrs old, suddenly had a seizure. He was rushed into hospital and given a cat scan when they found a massive tumour across his frontal lobes. They performed surgery, but were only able to remove 90% of the left lobe tumour and that's when they told us he had a grade IV GBM and prognosis was 6months.

He finished 6 weeks of aggressive radio & chemo just under two weeks ago. He was amazing through the treatment, no side effects apart from tiredness and mentally he was as sharp and witty as ever. However over the past week or so he has deteriorated rapidly. He is going through what they call "sleeping syndrome", which I think we expected after treatment but what we didn't expect was the mental deterioration. They had started to ween him off his steroids but then decided he needed to go back on and for a day or two he seemed to pick up, but now he is getting very confused again and coming out with some very bizarre things indeed. He is also starting to get very down about it all.

I live in London (have done for 6yrs), my family are in Sydney. I went to Sydney when he was taken to hospital and returned about 6 weeks later. Of course with the prognosis he was given, I was never going to be back in London for long. This weekend I have shipped most of belongings home and am slowly saying goodbye to the life I have created for myself here and I feel so very sad and scared about what lies ahead. I'm looking forward to spending time with my dad, but am terrified of being so consumed by this illness and getting lost in it that I sometimes feel like I won't cope. And I'm so glad I have found this forum, to know that there are others going through the same. You're stories have had me in tears, and some have made me laugh (needing longer arms:)

But you know in all his confusion there are amazing times of clarity. It's my mum and dad's 35th anniversary on Monday, and they were talking about it at breakfast, when my mum asked my dad "You'll have to let me know what you want (gift wise), what would you like?" and he replied "another 35 years". That makes me cry my eyes out everytime I think of it.

Anyway, this is a super long post so I will finish here. Thank you for reading and I hope we get to chat to each other.

Thinking of you all and sending all my love to you and your loved ones.
Sam

Chain · Posted: Sun Sep 24, 2006 6:06 am Post subject: Re: Hi, new here

Damn, not another one.... its like rust this bloody cancer thing and spreading like a bushfire..., Gday sammi, and welcome.... get use to crying, because you got lots to do yet. and you think your post was long, get a load of this little beauty....

Joy, I loved the myspace you posted and I must say your family is much bigger than I knew, and what a groovy and beautiful looking bunch of dudes you are. I have my own myspace but as yet, have not bothered to do anything with it at all.

and another fellow ozzie on board... Hiya Jenugl and welcome to our little corner of the forum. considering we are all brought together due to these horrible sad (insert expletives here) circumstances, youll understand when I say, I wish you werent here. But welcome.

OK, where am I at.......

rightio, after a re visit to the surgeon, we have found out that they did less debulking than they could of done, due to the fact if they had kept going, the chances of my girl being paralised in her left hand side were too high to risk. Theres a fine line between quality of life and life expectancy I guess, and if I had the choice, I would go with the quality option also.

She starts traditional chemo on tues coming, intravenous type, one day a week for the next 4 weeks.

She is fairly disorientated most days now, and only had one day where I could say she functioned 'normally' as such. On coming out of hospital as posted previously, they started her on 2 dex a day, but due to her growing tiredness, we have doubled that and it seems to have helped somewhat. However, in the last few days sleepiness has really kicked in and the standard attire is a dressing gown and PJs. If we go out we take a wheelchair for her as walking takes much out of her and quickly.

I just had 2 weeks off work, and I think it was greatly beneficial to our sons as they were beginning to show signs of questionable behaviour and mood, so that was a bonus cos I was able to spend some very good quality time with them and work on them so to speak. So all good there.
They are handling it rather well and they seem to have come to grips with the situation and have learned to accept the inevitable outcome..

her mental/emmotional state is weakening day by day and its becoming increasingly difficult to keep her positive. and thats draining. She firmly believes her time is close.

The following may seem strange or bizarre, or simply BS, but I assure you it is an accurate account of todays occurences. Make of it what you will.

At one point during the typing of this post I went in to check on her and she was having what looked like a panick attack. I asked her what was wrong and , she told me my late father was at the foot of her bed, holding his hand out to her. (He passed away in 1999 and he and my girl were the closest of freinds). I asked her what he was wearing and she said his bowls whites, (which he was burried in). I asked her how he was , weather he was smiling and freindly and warm or whatever, and she said he was happy and well, and eventually she felt comfortable with his "ghost" there. After a few more probing questions, she told me he had my slouch hat (army headwear) in one hand and some childrens drawings under his arm. He was burried with these items also.
A very noticable chill was present on the spot where she claims he was standing. I know this because for some unexplained reason, perhaps curiosity, I physically stood there and I broke out in goosebumps.

I told her to tell him I loved him.

Then I called my sons in, and straight out told them, say hello to poppy spike, he is standing right there...

They were perplexed but smiled and said hi and waved regardless, indeed a tad confused, but curious. According to my girl he grinned and waved back.

My girl said to me.... He wants you to give the boys a hug for him, and that he would be able to feel it. So I did. The younger of the two wept uncontrollably for no apparent reason. I felt blessed to experience such a special and extroadinary moment.

She told me he said he would be there for her when her time came, and this seemed to put her at an even greater ease with the situation she was experiencing with his presence.

After about 6-8 mins he began to slowly fade away until eventually he was gone. The chill in the room dissappeared and changed to warmth, matching the rest of the temp in the house again.

Right throughout this whole event, for want of a better word , her emmotions went from freaked out, to terrified, to laughing tears of relief. it was truly an amazing experience and one I felt totally at ease with. Somehow I feel it gave me the platform to convince her that everything was cool, and she could relax, and try to just do the best with what time she had left and that she had nothing to fear, but this is one of the biggest tasks of my life I can assure you.

In the last week or so I have had to attempt to convince her a few times that she has nothing to fear, as she is seemingly terrified of death.

I interperet this occurence as.... my fathers attempt to reassure her that she has nothing to worry about. But im still not totally sure how to interpret it.

Soon after, she got out of bed with a little help, sat down and had some dinner with us, then watched TV with us for a while and has just gone back to bed for the night. I will be following very soon.

Thats all I got for now.... Joy, Kris, Jenugl, Sammi.. all the best for now my freinds and my thoughts are with each and every one of you and your families. keep strong, there really is no other options and rightly so.

Chain.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hi Dear Chain ... and all our friends here. I am saddened to find that other's have joined, although I am glad for my sake. I am sad for you that have joined, for that means you are suffering, as are we. I am so sorry that so many must suffer at this monster's grip. So sad ...

Today was a good day. Forrest seems to be growing stronger. We spent 2 nights, 3 days in hosp week before last. Dr. says Forrest is in total remission. This is what they told us in July, as well. But ... it takes 6 mo - 2 years for radiation damage to show up. Forrest had 31 rounds of radiation and took Temodar throughout his sessions, in Feb and March. So the 6 month mark has just passed. Many new developments. Neuroloigst said that eventhough the tumor was gone, the brain is beginning to literally liquify and turn to water from the radiation. So ... he is ... hmmm, for lack of a better word ... challenged!

Very weak on right side. Has a very difficult time eating, can still not talk, has trouble walking, moving, and maneuvering. His right arm now lies limp most of the time. He favors his left side to eat with now, etc. He stares out at the humming birds on our patio. How I wish he could tell me his thoughts, share his feelings, tell me his heart.

I am anxious. I, like others, want to know "how long" we have. The oncologist told him to quit living to die, and start living to live ... for the "tumor" was not killing him, since the tumor was gone. The neurologist brought us the "brain liquifying" report the following day. I don't know what to think now. Is he going to live like this for years, is he dying, slowly, day by day? I know this may sound morbid. I don't mean to upset anyone. I just think life would be easier if we had a time frame of some sort. The oncologist gave me hope that Forrest might actually get well. The neurologist stole that hope away!

I can now manage to shower him better/easier. I feed him soft foods, for he strangles easily. Have to add "thick it" to his beverages to make them thicker to keep him from choking. Blood clots came back in his legs. His right ankle is extremely swollen. So I constantly worry about a blood clot leaving his leg and lodging in his lung, which can cause instant death. I worry about him falling, hitting his head and bleeding to death, since he is on blood thinners. I can no longer leave him for more than a little while at a time. I miss going to the movies, to church, shopping, visiting with others ... yet it is all easy to give up in light of being with him. How I miss our traveling together, him driving and taking me out to dinner.

My real world consists of worrying about no insurance, do I put him on medicade, do I wait until he qualifies for medicare, which should be soon. So many questions, so many fears, so much sadness ... yet I look into my children's eyes and feel hope swelling within me for Forrest. Oh I long for him to be with me to help raise our 8 yo son, and walk our 21 yo daughter down the isle one day. Two of our sons are in college. I want Forrest to see them graduate with their Master's degrees. It is so hard to plan, to hope, to go on like all is well! I know those of you here understand what I'm saying.

Chain ... I am concerned about you and your babies. You seem so strong, so brave. It is so good that you are there for her. Stay close to your children dear Chain. Allow them to comfort you by watching them play. Try to enjoy those babies and the time you have left with your sweet wife.

You are in my thoughts and prayers dear Friend,
Joy

jenugl · Posted: Tue Sep 26, 2006 7:31 am Post subject: Re: Hi, new here

Damm... I just typed a big post and accidently hit something on keyboard which deleted it all....
Anyway - to Sam - I hope all goes well with your move back to Sydney. It must be hard to leave all your friends and life over there. But being with your family at a time like this is what's needed. Have a safe trip and stay in touch as just reading all the posts from Chain, Kris & Joy shows that it really does help talking with others who are going through the same thing - thanks to all for letting us join in.
Chain - WOW!! what an experience your lovely brave lady had. I hope my partner Ugly (that's been his nick name for over 20yrs - I don't know why - he's Gorgeous) has something as special as that which will help him in easing his fear. I'm not sure what to make of it either - but I'm glad to hear that it has helped in some way.
Joy - it is so frustrating when you get different answers from everybody - after the operation we were told the devasting news of - you have up to 2yrs left to live - that just devasted us then the surgeon said that he got all the tumour and all that was left was healthy brain tissue and they will just use radio to kill off any cells that might be left behind. We have been led to believe that this is beatable and that he could live for another 30yrs. Maybe we didn't want to ask again for fear of getting the same outcome (2yrs) I have only realised in the last couple of weeks that it's not something we can just treat and expect 30yrs more life. Ugly still believes that to be the case and I haven't asked him if he want's to know the real results of this disease and he doesn't get on the internet to find out. Maybe I want him to believe that after this treatment his outlook is good. I think I'm scared of him knowing he's going to die. I don't know at the moment what's best. I know he knows it's serious but.... I feel like I'm just rambling and feel so confused about what's in my head and putting it down in words.
We have been together for 7yrs and are soul mates and have 3 kids between us. Ugly has a 15yr son and I have a 13yr son and 18yr daughter they don't realise how serious this is but know just by looking at him that it's bad. He use to work on an ashpalt crew building roads and was so fit and now he is losing soo much weight and can hardly sit up straight. Well that's it for now.
Reading all your posts is really helping me Love to one and all and will no doubt speak to you all again. Take care guys.
Jen

bc · Experienced user Joined: 11 May 2006 Posts: 54

Hello,

I have been reading this post with interest, as my father has GBM since last Dec.

After his surgery and initial treatments, IMRT and Chemo, a new growth had appeared. He than had Cyberknife to help control that tumor.

I believe from july to now, the tumor seems to be stable, that is, not growing too much or at all.

I think it's important that the family know the realistic approach as to what will happen... reason, so they can spend quality time together, especially when he is doing well. For when he is not doing well, he won't be able to go out and do things and just have some fun family times.
My dad feels that he can be around for several years, and I think it's good for him to think this, but he also knows that this will be his demise. He is realistic and positive at the same time. He is 71 and knows he lived a full live, maybe that is the difference with my dad as compared to someone who is much younger.

For now we move on and just enjoy each day...

One thing to look for, as time goes on is alternative treatment... Perhaps the longer you live, maybe something new will come up that will work better than what they have. That is the hope you can lean on for now.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

jenugl and bc ... thanks for your replies. I am so sorry that you're having to deal with so much. It is so painful to see our loved one in pain.

My husband has a tumor called an ependymoma. It is a very slow growing tumor, which makes it different from GBM. They did tell us he had a GBM at first. It took a month to get the pathology from MD Anderson that read the tumor was an ependymoma instead. This means we have more time. But ... that time is not quality ... and is very sad and hard. My husband is weak, sad, has not much strength or coordination on his right side.

The tumor grew back more than 100% in a year. The neurosurgeon got 99% of it this past Jan ... but we followed up with 31 rounds of radiation and Temodar, which is an oral chemo. It is the radiation which did the most damage to my husband's brain. His good cells were killed, along with the bad ... and unless the Lord above allows a miracle, he will never recover/be the same again. The quality of life is greatly effected after radiaion/chemo.

God bless you ... Reader ... for if you are reading this, you are most likely living with this monster in your life. God bless you, and yours,
Joy

vintage · Regular Joined: 12 Jun 2006 Posts: 35 Location: Minnesota

Hello Chain, Joy. How are you doing??? I try and keep up with the boards daily. I am sorry to see some new people posting having to deal with this disease.

CHAIN~ I read your post about your wifes event "seeing" your father. I believe every word of it!!
Somewhere on one of the links on this forum I posted my own experience I had 6 months after my Dad died. Can't remember where I put it. Maybe you'll come across it and read it. I also have had one other experience 28 years ago when my husbands mother died. I firmly believe these things happen.

jenugl, sam and bc ~ Nice to meet you, but I am sad it is under these conditions. I lost my Dad 10 years ago. I still keep an eye on GBM stats to see what progress is going on. I also will share my experience so others can see a bit of what they might expect. 10 years ago I had no one to talk with. I'm so glad there are places people can go to look for help or just someone to talk to.
I do think getting other opinions and keeping abreast of new treatments available is so important. You never know what might be available.

Keep in touch.

Prayers for all of you!
Kevan
AKA vintage

Sammict · Posted: Thu Sep 28, 2006 7:01 am Post subject: Re: Hi, new here

Hi All,

Thanks for your kind words.

Well my Dad seems to be deteriorating rapidly. He is now "not with it" 90% of the time and is becoming more of a danger to himself. He's recently become obssessed with scissors and cutting everything up and has started to smoke in the house (which he never does) without an ashtray and ashing on the floor, he's also been trying to take my mum's tablets. My mum is beside herself thinking he may burn the house down or cut himself or her, and has now taken to having to hide everything from him. He had a fall yesterday and also lost control of his bladder.

It is all just so sudden, he finished his radio/chemo two weeks ago and up until then was pretty much himself, but within 2 days of finishing he has just nose-dived into someone we don't recognise. We asked the community nurse if this could be a side effect of the radiotherapy and she said no and that it was the tumour - which basically tells us the treatment has done nothing or very little. However, I did some research on the internet yesterday and found that following radio, symptoms can worsen before getting better, I also had this confirmed by a cancer nurse in London. So I'm quite annoyed that she gave us such a definite answer, taking our hope away before he's even had his MRI scan.

They also started to ween him off his steroids after treatment but when he started to get confused put it back to his full dose, which seemed to work for a few days, but he's gone down again. The consultant has today tripled his dose of steriods in the hope that we see some change in the next week, if that doesn't work then they will take him off them. Has anyone else experienced similar problems after stopping treatment??

Hope all is going as well as it can for you.
Sam

bc · Experienced user Joined: 11 May 2006 Posts: 54

hello,

When my dad finished his 6 weeks of radiation and chemo, he was doing well. Than he had the MRI and showed some new growth. They say that is not uncommon that growth would be there after the initial treatment and that follow treatment would most likely be needed. He had surgery prior and had the tumor completely removed.

He had some changes with language skills , right before he had the Cyberknife treatments.

They weaned him from the steroids and had a seizure when he was taking 1 steroid a day. Turns out the anti-seizure medication (generic drug) wasn't working, so now he is taking the real drug. They can do a blood test to make sure his medication is working.

My dad has general confusion from the tumor that is there, and steroids are used , either 2 or 3 a day. I think he goes back and forth, and the Edema is the issue and can cause changes in someone.

He had the cyberknife in july, and now it looks like the tumor has not grown. It grew a little right after the cyberknife, again they say that is common.

I think I would insist on an MRI, to determine tumor growth/edema and use that to help with what medication/strength he should have.

If there is new growth, I would inquire about cyberknife/gamma knife, if it's not operable.

Your dad may always have some level of confusion, but now it's about getting it under control and manageable.

Hope this helps

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