Wife diagnosed with GBM

KelJ · Posted: Sat Jul 07, 2007 6:32 pm Post subject: Wife diagnosed with GBM

Second attempt to post my story, but I just find it so hard. My wife was diagnosed 3 weeks ago with a Gr III astrocytoma but it was just changed to grade 4 based on the indicators found in biopsy. We had just started to get used to the idea of a grade three and now we find that it was based on the location of the tumor instead of primarily the biopsy. What a cruel disease!

Unfortunately it's a Thalamic tumor and we're being told that the complications from surgery are too much to risk and are instead just starting on a 6 week regimen of radiation and Temedol. The doctors don't want to discuss prognosis until they see how she responds to the treatment so I'm left with scouring the internet which isn't very helpful since all the studies seem to be based on patients with some kind of debulking surgery. I can only expect a shorter struggle for her but , seeing as we were just planning our son's second birthday party when we received the diagnosis, it's so hard.

I realise that one doctor's opinion on what's operable and what isn't is just that: an opinion. But this is a team opinion based on several neuro-surgeons and I'm very hesitant to move my wife away from a treatment program to try and find a surgeon who will operate. So it seems it's either postpone the treatment to find a surgeon who may do more harm than good or wait until the treatment has finished and she's strong enough to look at surgery. No-one should have to make these kinds of decisions, let alone those that are surely coming in the future!

Anyway, just wanted to get our story out there and perhaps hear if anyone has an opinion on our situation.

Thanks!

Kel

kashrel · Regular Joined: 24 Mar 2007 Posts: 25

Dear Kel

I am so sorry to hear about your wife. If you only have a 2 year old son, she must be very young. I wish you all much strength. Make sure that you talk about things now while she is able to, be aware of her wishes for now and the future ( especially in regards to your son). Time is precious for all of us on this site.

In terms of surgeons, here in Australia we have a surgeon Charlie Teo based in Sydney and he is considerd some kind of maverick and will operate when no-one else will. He is one of the leading neurosurgeons in the world but also quite controversial. You can google him and read a bit about him. He specialises in keyhole brainsurgery and his results are excellent.

Had we known we would posibly have used him for my dad.

Being a thalamic tumour, what were the signs and symptoms that something was wrong?

I will be thinking of you and your family. I hope that your wife responds well to treatment. Let us know how she is going

Wishing you strength
Karen
_________________
Karen
Melbourne

KelJ · Posted: Sat Jul 07, 2007 8:23 pm Post subject: Re: Wife diagnosed with GBM

Thanks Karen,

Yes, she's quite young (we're both 3 Cool

, we've been married 14 years. I've been reading up on Dr. Teo as he's definitely a consideration if the radio & chemo aren't successful. Strange how you read about so many different timelines depending on where you go. I only wish it was easier to tell which was relevant to us.

Thanks for the comments and wishes though... they're pretty much the only thing that's keeping us going at the moment (except for our son of course).

Kel

KelJ · Posted: Sat Jul 07, 2007 8:37 pm Post subject: Re: Wife diagnosed with GBM

Sorry Karen, had one of those moment there. Forgot to actually answer your question.

She had a number of symptoms over about two months prior to the CT that led to her diagnosis. Vision problems were the first, but it was attributed to convergence deficiency (which we're still not sure if she has or not), then came fatigue which was chalked up to a thyroid problem she has, and finally came headaches which were initially blamed on the increased dosage of her thyroid medication. We ended up pushing for a CT which showed a blocked drain from the third ventricle leading to hydrocephalus. And her first (and only so far) surgery, which was an ETV and biopsy.

Which lead us to where we are now. Still, not bad for three weeks (actually 18 days) after diagnosis and not quite three months after first (mild) symptoms. Not that any of this has been good, but at least we haven't had to wait too long for anything.

jenugl · Posted: Sun Jul 08, 2007 6:50 am Post subject: Re: Wife diagnosed with GBM

Hi Kel, I'm so sorry for you, your wife and your family - this is such a terrible disease and it is so unfair that people have to go through this. If you have been reading the posts you would have read my story. Partner Andrew with GBMIV. I can't give you advice on treatment as Andrew's was operable but I have heard alot about Dr Teo who Karen was talking about. Unfortunately what treatments you take up is a decision that you and your wife will have to make and I can see why you are so torn. It is so hard to know if we are making the right choices while going through all of this. But whatever decisions you make, know that myself and I assume everyone else on this forum are sending you all our love and prayers. Please stay in contact and let us know how you are all going and there are lots of people on here who can help you with questions and support. Take care. Love to all. Jen

KelJ · Posted: Fri Feb 15, 2008 10:21 pm Post subject: First recurrence

Time to bring this up to date a bit and get a little advice. We've now progressed through radiation and chemo (both concurrent and the follow-on series). We've had three more MRI's, the first of which had some growth which turned out to be pseudo-growth from the treatment, second a month later was stable and now this third one in Feb had growth.

Thankfully there wasn't a huge increase in size but there was significant change in the appearance of the tumour, especially on the flare slides. So, our treatment on Temozolomide has come to an end with 5 of 6 series complete and we're looking at what's next for us.

We've had some problem with platelet counts dropping, especially when we shifted to the higher dose and so it looks as though out options are somewhat limited. The 2nd line treatment that the doctor appears to be favoring is Etoposide (sometimes called VP16) but I'm not having much luck finding out anything much about it when treated by itself as it seems to be one of the more popular concurrent treatments (normally paired with Avastin or Cisplantin).

Anyone out there have any experience with this drug? Side effects or efficacy?

Hard to believe it's been nearly 8 months for us struggling with this, especially since we haven't managed much good news along the way. We're now on Dilantin and Clobozam for seizures and Decadron for the swelling. Double vision is still the biggest problem, with my wife wearing a patch most of the time now. At least we're getting to where we can start planning our son's third birthday, so that will be something to look forward to.

Sorry to ramble on but it's somewhat theraputic and at least I'm not just lurking anymore!

Kel

ksplat · Posted: Sun Feb 17, 2008 8:05 pm Post subject: Re: First recurrence

Hi Kel, So sorry to hear about your wife's battle with GBMIV & the devastation to your family. You are in my Prayers & Thoughts.
My Bro will be undergoing his 4th debulking surgery 2morrow. He was diagnosed 12 mths ago with the same cancer. It is a r frontal lobe tumour on his brainstem. He was originally told it was inoperable because of it's location but he has a wonderful surgeon here in Qld that has operated each time. After his 2nd surgery last May he was left paralysed down his left side & has never regained movement since. He hasn't been left with deficits from other surgeries, which is a blessing. He & his wife have fought this thing with every ounce of their energy & still remain positive, focused & with their outrageous sense of humour intact....they are an inspiration.
We had earlier looked at going to Charlie Teo as his reputation in Australia is renowned., in saying this it must be daunting for your family to be considering seeking treatment in Australia! Surely there is a specialist in this field in the US, closer to home (I'm assuming you are from the US?) that could be consulted about surgery for your wife?
Have you heard of the Ruta 6 treatment from India. It has been talked about here on this forum before. From what I've heard & read there is real proof this therapy can bring around tumour shrinkage. My Bro will try it when the Temodal ceased to work on the tumour.
I have also read of an Australian cancer specialist with the same tumour who has been treated with the PCV tri chemo therapy with much success.
I hope this advice helps in some small way.
God Bless.
Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

KelJ · Posted: Sun Feb 17, 2008 9:56 pm Post subject: Thanks Angie

Thanks Angie. Just looking into the Ruta but I'm kinda skeptical about it. I've searched all over the net and can't seem to find anyone still active on boards that had success with it. Mind you, there are plenty of places saying that it does work, so as long as it doesn't interfere with the chemo then we'll be giving it a shot.

Should be starting Etoposide tomorrow, but I'm not sure what the cycle is for it. Hopefully it's something simple like the Temodal was.

We're actually in Canada and our neurosurgeon has offered to do the surgery but he's very concerned still with the location. Gives around a 30%-40% chance of neurological damage with a number of different possibilities. In any case, it's not something we want to try right now, but you never know what the future will bring.

Our thoughts are with your brother tomorrow as he heads into surgery, I'm sure everything will turn out fine. Sounds like he's a pro at this now and attitude has such a huge part in it all!

Thanks again!!

Kel

jenugl · Posted: Tue Feb 19, 2008 6:02 am Post subject: Re: Wife diagnosed with GBM

Hi KelJ, I'm so sorry to hear that things are not going too well with the treatments. I can't offer any advice on the new medication as I haven't had anything to do with it. I hope you can find out more which will help make your decisions a bit easier. My thoughts and prayers are with you and your wife. Love Jen
_________________
Love to all. Jen.
_____________________________

Partner of GBMIV survivor - so far.

http://cancerforums.net/viewtopic.php?t=9502

Tammy · Posted: Tue Feb 19, 2008 8:10 am Post subject: Wife diagnosed with GBM

Hi KelJ and family,
I am sorry to hear about your struggles with this nasty illness. I give you all the strength to carry on and keep looking for something new to help your wife. Never loose hope and keep all your positive energy. There are always new medications and treatments. A lady here was told that they couldn't operate on her so seeking for further help she found it in Montreal, they preformed the surgery and is well as of now, just a thought for you to maybe look into. Also I was told about this book when I was in the hospital back in October. It's called "The Secret", supposably it's a great read, I guess there is a movie about it also. I never had the chance to read or see as of yet. But I thought I would let you in on it as the woman in the hospital did with me, she believed in it so much. I wish you nothing but the best. I wish I could be of more help, but all I have to offer is my positive thoughts from my end. Wishing Both of you the best of luck on the journey you face together. Take Care and hugs to your little one.
Tam~

kad · New User Joined: 27 Feb 2008 Posts: 4

I am so sorry. My Tim who is 47 years old has this too. His is VERY fast growing. We found out around Thanksgiving time in 2007 and now 3 months later, even after 7 weeks of chemo/radiation we have been told we have 2 days - week left. This is the worse thing that has happened to me in my life.

Go do something fun! Even if it is just going out to eat. The doc's never want to talk about prognosis. They don't know, and they are not going to tell you. They will just say towards the end, "It is time to get your affairs in order, if you haven't already done so."

I hope the best for you. I am truly sorry, I know what you are going through as I am in the final stages of it. It is terrible. Make sure to say your I love you's. I wish you the best. Feel free to write me more if you want.

Karin

ksplat · Posted: Thu Feb 28, 2008 6:15 pm Post subject: Tim

Dear Karen
I am so very sorry to read about your Tim's current condition. This GBMIV is nasty, nasty, nasty! Tim's in particular is very aggressive, having only been diagnosed in Nov 07! So sad for you with him being soooo young (same age as our Mark!)
Please know my prayers & thoughts are with you today & always. I know you will be cherishing every moment with your Tim.
God bless, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

KelJ · Posted: Thu Feb 28, 2008 6:57 pm Post subject: Hateful Disease

Karen, I'm so sorry to hear your news. I will take your advice to heart and we are shortly off to do something fun. It's so strange that we're seeing progression in the disease and yet Shel seems the best that she has ever since we started treatment.

Regardless, it's a hateful disease that destroys so many lives; both families, friends and patients. I can't believe how fast yours has gone but my heart goes out to you as I do know a little of what you must be going through.

Our thoughts are with you,

Kel

petrit · Regular Joined: 15 Aug 2007 Posts: 21

HI Kel I am very sorry to hear for yours wifes disease. My father has astrocyoma annaplastic grade 3 , ha d a surgery in Albania where neurosurgeon is fantastic , My father tumor was size of mandarin at the time of diagnosis. He is doing fine now done radiation for 6 weeks and he is still on temodal now in 6 cycle, for about 3 months he was on ruta 6 aswell not problem at all. Ruta 6 your wife can tak in same time as temodal. Regarding neurosurgeon in Albania he is fantastic too so my fathr was very lucky to have operation , so if u need any info pls just email me and I will be more than happy to share my experience on this disease

Hope your wife getting better specially for your kids , my daughter birthdays is in week so its very hard for u

you are in my prayers and thoughts

traceysharon · Posted: Fri Apr 18, 2008 2:05 am Post subject: Wife diagnosed with GBM

Dear Kel

I have read your posts, and wondering how things are going?

My husband is in a similar situation to your wife - diagnosed with a Grade III Oligoastrocytoma in July 2007 - had surgery which removed about 80%. This was followed by 30/33 radiation sessions - he was not able to complete the final 3 sessions due to severe swelling. This was then followed by 5 cycles of Temodal 5/23 at 300mg each day for 5 days out of the month.

A recent MRI and PET scan has shown the tumour is growing, so for us too it seems we are at the end of the road with Temodal. We had an appointment with our chemo dr on Thursday. Failing surgery as an alternative, he has prescribed a different sort of chemo to start Wednesday, being Carboplatin and Etoposide. The Carbolplatin is an IV infusion which takes 30 - 60 minutes. For the following 11 days the Etoposide is taken - 1 tablet each day for 11 days. This can be taken at home.

I wonder if your wife has started on the Etoposide since your last post, and what benefits/side effects she has experienced? If you could let me know I would be grateful.

My thoughts and prayers are with you and your young wife and family at this horrible time. This site is a God send as it lets us all know we are not alone in going through this.

Kind regards
Tracey
_________________
Tracey, Wife of Patrick
Diagnosed July 2007 with Oligoastrocytoma Grade III
Resection 18 July 2007
30/33 radiotherapy treatments
5 months of Temodal (5/23)

	Cancer Forums Forum Index -> Brain Tumors Forum	All times are GMT - 5 Hours Goto page 1, 2 Next
Page 1 of 2

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others