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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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 Posted: Wed Mar 25, 2009 12:36 am Post subject: Gliomatosis Cerebri |
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Hi Everyone,
I started a new thread as things seem to have changed with Elias' diagnosis, and thought the new title would reflect this a bit. For anyone unaware of our whole story, you can see the link in my signature line below. . . .
We met with Elias’ oncologist today, and it seems his tumour has changed from its original diagnosis, growing now more like what is called a ‘gliomatosis cerebri’, which is apparently quite rare. From one standpoint it is positive as it is not forming a solid mass, but on the other hand it is worse as the drugs they have are generally not as effective on this type of tumour, they are better suited to treat a ‘mass’. It is also showing signs of more agression.
That said, we are not giving up hope and neither are the doctors - they have prescribed etoposide for him to try and will try carboplatin should this one fail, though there isn't a great deal of optimism for them to work.
We started a new treatment with the naturopath on Saturday and he has been feeling a bit better since. We're going to try and stay at his parents a few nights to get some extra treatments in, though we will be taking a break tomorrow as Elias had another anxiety attack tonight. I managed to get him to bed at a decent time though, and hopefully the extra rest will do him some good.
The bright side is, he is still doing remarkably well, considering. We are hopeful that since the new treatment from the naturopath makes him feel better, that maybe it's working to shrink the tumour - but at the same time we have to be realistic and accept that there is a strong chance at this point that things won't get much better - but who knows, someone from our community who heard our story dropped by yesterday with an earth magnet that he said he used to cure his cat's brain tumour, so maybe it will work for Elias too - even our n-onc said why not 
Take care my friends,
~C~
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Kristalee
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Joined: 06 Nov 2008
Posts: 48
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| Posted: Wed Mar 25, 2009 8:33 am Post subject: Re: Gliomatosis Cerebri |
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Wow, 
This news must be very frightening! I am very sorry and upset for your family.
I am praying for his treatment to work Chelsea! I will be asking Mark's Nero Onc about this type of tumor and see what he says about new treatments. Please let him know Mark and I are thinking of him.
If you ever need to come to the States for treatment, you can stay with us or even my parents, we both live close to Dana Farber.
Did you get some Ativan ? If he is having panic attacks, it will help him sleep.
Love
Krista |
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Wed Mar 25, 2009 9:35 am Post subject: Re: Gliomatosis Cerebri |
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Thanks so much Krista,
We did get the ativan and it has helped - of course when the anxiety attack started last night I couldn't find it so I called the pharmacy and my mom and arranged for her to pick some up and bring it over asap - and then I found it two mintues before she got here 
It's not good news - though it does explain why the n-onc said avastin wouldn't work for him. I've been 'googling' gliomatosis and it doesn't look very promising as the only somewhat effective treatment is temodar, and he's already become resistant to it.
Maybe something the ND uses will help though as no one is giving up yet.
~C~
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Roman957
Regular
Joined: 22 Feb 2009
Posts: 27
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| Posted: Fri Mar 27, 2009 2:17 pm Post subject: Re: Gliomatosis Cerebri |
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Hi Chelsea,
I am so sorry to read your latest updates and to learn of this new diagnosis. I can't imagine the emotions and feelings that you and Elias are going through. Your strength and courage through all of this is truly remarkable. Despite this setback, the fact that neither of you has given up hope is a testament to your and Elias's strength of character. It is truly inspiring. I will continue to keep you and your family in my prayers.
One question I thought to ask: in all of your messages and postings about different treatments, you have never mentioned the so-called cytostatic drugs like Bevacizumab, which is an angiogenesis inhibitor i.e. it prevents the creation of blood supply for a tumour. Would these types of drugs be applicable in this type of case? Until you mentioned it, I had never heard of this type of cancer, probably because it is so rare. Obviously I have no idea if this type of drug could help or not, but just thought to mention it.
Take care,
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5970
Location: Tennessee
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Thu Apr 02, 2009 1:44 am Post subject: Re: Gliomatosis Cerebri |
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Hello all,
After a rough start to the week, Elias is doing a bit better today. He started treatment with Laetrile and hydrogen peroxide through IV at the naturopath last week - the oncologist didn't give us much hope for the chemo provided, so we felt it was time to change up what we were doing with the nd too. I know laetrile is pretty controvercial and banned in some places, but with few options we felt it was worth a shot.
He started getting stronger headaches off and on last week, and it peaked on Monday to the point where he was lying on the couch, couldn't sit up, and was moaning in pain. I was in contact with our nurse practitioner who upped his dexa dose to 16mgs and suggested some extra strength tylenol. When that didn't do anything and he was still in a lot of pain, she suggested taking him to the emergency room to get a stronger pain med on iv. After almost 3 hrs waiting in emerg (though at least they had him in a quite, private, dark room) the doc came in and decided that Elias didn't look like he was in much pain and that since narcotics are the only next step, and they have bad side effects of their own, he suggested taking some tylenol and going home. What a waste of time. At that point he was feeling a bit better than when we got to the hospital, but he had been lying still in the dark for 3hrs! Once we got up to leave it started getting worse again, but we just went home.
I guess the extra dexa finally started to reduce the swelling though and by the next day his headaches were mild, shorter and more easily controlled by tylenol. He has started feeling as if he's had double vision today though. The headaches and double vision seem to come and go throughout the day - has anyone else experienced this?
Anyhow, the stats on GC brain tumours are terribly grim and we are slowly starting to explain to his family and mine that there is a good chance he may not make the end of the year. Of course, stats are just stats and with the condition being so rare there aren't many cases to go by so we are keeping hopefull, but there are many times when he is so aware of the deficits from the tumour and the dexa that he feels like he is slipping away already - not the same person he was - and that is hard for him to take. One would almost think it would be better if he wasn't so aware of it. He also hasn't read as much about how things 'usually' go towards the end for bt patients, and so many times when he's feeling a bad headache or other problems, he thinks 'this is it' and that he's going to die any day. I try to explain that it's not likely the case and that it usually takes time, but he then reads too much into signs I explain and thinks that he has them all, when he clearly doesn't. We've managed to stay pretty positive throughout much of this experience, but it's getting harder to get him feeling good these days.
We are staying with his parents right now, and I know it's hard for them to see, but it's good for them to have the time to spend with him too. His brother in Norway will come in a few weeks, but his brother in Australia is worried about losing his job and has a pregnant wife so I don't know if he'll be able to come anytime soon. We haven't had a great chance to really talk with him at length about where things are at now - I just hope he can come soon as Elias would not want his brothers to see him in really bad shape. I have so much more to say but can't think of it just now - time for bed.
I hope you all are doing well,
~C~
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 117
Location: New Brunswick, Canada
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| Posted: Thu Apr 02, 2009 9:26 am Post subject: Re: Gliomatosis Cerebri |
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Hey Chels and Elia's
I really want to say something to make everything better. I am not going to lie, I really do not know what to say. Yes I know I want to say I am sorry to hear it and I surely am but we always hear that. One thing for sure I want you to know that I am thinking of you both and I so hope maybe there will be a change in things and a miracle will happen, they have happened before. I better not try to say anything as I am afraid it may come out wrong or something but I want you to please know/remember that I am thinking of you and Elias, and like always in my prayers when I do say them...
Take care my friend...and NEVER give up....everything I ever read from you to me or in your thread itself was always done a positive perspective. I hope you always keep that with you.
Thinking of you,
A friend Tammy*hugz*
I've had a few setbacks in my life, but I am not giving up!! |
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Wed Apr 15, 2009 1:52 pm Post subject: Re: Gliomatosis Cerebri |
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Hi all,
I'm in a bit of a posting frenzy today . . . taking me a bit away from work , but my mind is elsewhere anyhow.
I've been a bit absent from posting as we have been so busy lately, but I try to keep up reading anyhow. We have been living at my in law's for almost 3 weeks now - he had been doing really well, only one headache since the last one a couple of weeks ago, but the naturopath was away last week and only gave him the vitamin treatment to play it safe. We were going to go home yesterday for a little break after treatment, but Elias lost his balance in the morning and almost fell right over. There were other factors that didn't help matters, but I think without his current status he could have stayed on his feet. A few minutes later he seemed to have a slight focal seizure - his face/eyes had a slight 'twitch' for a few seconds, then it went away. I think it was likely from the stress of the fall, but still worrysome.
Then a bit later we were walking across the parking lot to the clinic and he was having a lot of problems - he was leaning heavily to the right and had to lean on the door when we were on our way in. The receptionist took our little one (he had been carrying her) and I held his hand to help him walk to the treatment room, but he was having such a hard time. It seemed to be temporary as after sitting a while during treatment he seemed ok the rest of the day, and fine today, but who knows. They think maybe his tumour is pressing on his optic nerve, because he has also had double vision for the past few weeks.
He would normally be so excited to watch the hockey playoffs, and now he can hardly see the game, or at least he can't figure out what's going on very well. Our oldest daughter was so excited to go home, but fortunately she's a wonderful child and graciously accepted the turn around back to 'Oma and Papere's'. I'm meeting with the hospice society here in Delta tonight though, to talk with them about how best to approach things with her. She is now just over 4yrs and she sees a lot going on with him, but doesn't understand it.
Still, somehow we find ways to laugh every day - manage to make some jokes about the double vision and memory loss, and though I get tired having to do everything now at least it makes me feel like I'm making a difference. He also shows his appreciation for the things I do, and our love for eachother is probably the stongest it's ever been - so it's not all bad.
Here's wishing you all well - peace, love and strength
~C~
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4lindsay
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Kristalee
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| Posted: Wed Apr 22, 2009 5:03 pm Post subject: Re: Gliomatosis Cerebri |
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| Indeed it is! I have to admit to being shocked when I read the news. How utterly sad I feel......what a beautiful person.......I give Chelsea and the girls all my love. |
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Thu Apr 23, 2009 12:47 am Post subject: Loss of my love |
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Thank you Dianne, and Kristalee, and everyone else.
My heart is broken, my love is gone and I keep hoping I'll just wake up from a really bad dream.
I can't post much else for now but will in time. Thank you to everyone here for your incredible support and understanding. It helped me immensely and I'm certain will continue to do so.
Hold your loved ones extra close tonight, in honour of mine.
~C~
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mabelank
New User
Joined: 13 Apr 2009
Posts: 6
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| Posted: Sat Apr 25, 2009 4:49 am Post subject: Re: Gliomatosis Cerebri |
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Dear Chelsea;
I am truly very sorry to hear that your husband passed away. But I know you will get better in time, maybe not now, maybe not in the next days or months but you will be fine. You are such a strong person that I know you will. Just try to hold on to your children and your loved ones now.
It must be comforting to know that you were there for him, you cherished the days you lived without knowing how many more you had together. And if this is going to be the same for us (me and my husband), I will try to do the same, too.
I really don't know what else to say... |
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Roman957
Regular
Joined: 22 Feb 2009
Posts: 27
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| Posted: Sun Apr 26, 2009 7:19 am Post subject: Re: Gliomatosis Cerebri |
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Dear Chelsea:
I left a brief message on your CaringBridge site as well, but please accept my deepest condolences to you and your family in your time of loss.
The news of Elias's passing came as such a shock, since your last messages were filled with plans for finally getting back home after having been away. I think it is especially poignant that one of the last things Elias was able to do for you was cook you and your girls a meal on Monday night.
No words can ease the pain and grief that you are feeling. I only hope that the knowledge that so many people are keeping you and your family in their thoughts and prayers brings some comfort.
God Bless.
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 117
Location: New Brunswick, Canada
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| Posted: Wed May 20, 2009 7:14 am Post subject: Re: Gliomatosis Cerebri |
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Cheals,
*a tight hug* I am so sorry to log on here and read your post this am...Please keep strong you are a great woman I can not imagine what it is like to lose the love of your life and all I can imagine is sadness...Dang I so want to say something to make you feel better, but I am scared it comes out all wrong....My blessings goes to Elia...* meaning I honor him for his braveness and always finding a way to smile for you * I hope this is is ok..
~Count all the days you had with Elias by golden hours, don't rememeber the clouds at all.....Count your nights by stars, not shadows, count all your years with him by smiles, not tears..~ Your friend Tam.. xx |
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Wed Jul 22, 2009 12:07 pm Post subject: Re: Gliomatosis Cerebri |
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Hello all,
A much delayed thanks again to everyone for your words of support. It has now been three months, to the day, since I lost my love, Elias. I miss him more than words could ever express
There has nothing easy about the last three months, and there have been countless tears, but I have survived somehow and have even found ways to laugh here and there. Not too hard when you have two beautiful little girls who radiate their father's wonderful energy - though at the same time this makes it tough to know how little of a chance they got to know him, and their similarities to him both comfort me and make me miss him all the more.
I hope that all of you are doing as well as can be expected on this rollercoaster - and taking the time to enjoy the good things along the way. I check the forum all the time (though I don't always have the strength to read all the posts) and see so many new members, which is sad, but I'm glad they have found this place of support as I had. I haven't seen as many familliar faces posting lately, so I hope you are ok.
~C~
www.letterstoelias.wordpress.com
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