GBM _

Kris · Posted: Sun Jul 23, 2006 7:01 am Post subject: GBM _

Hello Everyone in the Forum,

Two days ago I should never have believed that once I'd be registered on this website. Unexpected, sudden, shocking and terrifying - my beloved mother was diagnosed with glioblastoma (4 cm), a multi-lobulated, peripherally enhancing mass. There is extension into splenium of corpus callosum. She had no symptoms before apart from some headaches and slight problems with memory. She was a beautiful and energic 61 year-old woman. Since the diagnosis was made by MRI 2 days ago, she's rapidly getting worse, having constant and heavy headaches, nausea and other symptoms.
I have read through all the postings about GBM, and I feel more reassured and less scared when joining you, all, who already had to face this horrible disease in your families.
As my mum is in a weak general condition (both psychologically and physically), and as the tumor is too much infiltrating the corpus callosum, we/she will probably not opt for surgery (complete resection is not possible).
I'm looking for people who had made the same decision knowing that very few time was left without treatment. If no surgery is possible, have anyone had good results with Temodal ONLY?
Thank you for helping me with your advice,
Kris

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

Hello,

I new form of radiation is available, called Cyber Knife, but there is also Gamma Knife, which can reduce the tumor and perhaps control the area and is an option when surgery should not or cannot occur.

My father has surgery and needed follow up radiation and had the Cyber Knife. It is a 5 day treatment and well tolerated. The gamma knife I believe is a one day treatment, so should be tolerated.

I would ask about these forms of treatment, as well as something called Avastin. It has no side effects, but does come with some risk... but at this point, sounds like any risk would be ok, if the treatment and reduce or control the tumor.

My father is taking Temodar as well, and I think it works well with the Radiation. But each person is different so hard to tell how your mother would respond.

Hope this helps

Kris · Posted: Thu Jul 27, 2006 3:55 am Post subject: reply_GBM help

Dear bc,

I am so happy to have received a reply from you. Now I am currently in Hungary (my Mum is living here) and we have just received the bad news from her neurologists and neuro-surgeons that her status is so much aggravated that probably no treatment modalities are existing for her. Itüs so hard. Sheüs struggling to live and to get over this...she is taking steroids and other oral medications, and Avemar, a food supplement that became very famous and seems to be efficacious in cancer patients to boost their mental and general physical status. Noe we can only count on our love to surround her and some kind of palliative care. Iüm getting stronger in faith. Thank you so much for your encouragement.
Kris

Kris · Posted: Fri Aug 25, 2006 2:56 pm Post subject: Dear Bc,

Hi, I just wanted to share with you that my Mum is doing "stable" with her palliative medications (fentanyl, i.m. steroid), as you know her GBM was inoperably too big when diagnosed one month ago. I'm so much enthousiastic about your postings addressing Cyber Knife - I wonder if we'd try this for my Mum ... do you have any info about results with Cyber Knife in patients who had neither Temodar, nor surgery?
Thanks in advance,
Kris

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

Hello,

what I do know about cyberknife is that it can help to control the growth of tumors,but I think the size of the tumor is a concern as to whether or not you can use cyberknife. This is used when a tumor is inoperable, so I would inquire ASAP about this.

Gamma knife is similiar and could be an option if Cyberknife is not available.

I think Temador is a good drug and can work well with Radiation, so not sure why you wouldn't want to take this? But I guess that can be a personal decision.

Only certain hospitals have cyberknife, as it is relatively new, but gamma knife is an option, so ask about both

Hope this helps

Bc

Kris · Posted: Sun Aug 27, 2006 10:13 am Post subject: No Cyber Knife :-((

Dear Bc,

Thank you so much for your prompt reply - as you suggested, I asked about Cyber Knife options for my Mum's GBM ... Dr. Sheehan replied me on-line and said that this would only be recommended for tumors of less than 3 cm (Mum's was 5 cm at the time of diagnosis one month ago). So, I feel a little bit dissapointed. I was hoping for this treatment as I heard it had practically no side-effects.

Mum is surrounded by the family, we are discussing a lot, she feels relatively comfortable these times, as fentanyl and steroids work well for the moment. I think this is precious for all of us that she feels quite good, she has no pain and still has an excellent quality of life. As you say, deciding on the palliative care approach is a personal decision, and I think that in my Mum's case this is not unreasonable (taken into account the size and localisation of her GBM affecting the corpus callosum).

We hope that these days would last long, but, with my sister and brother, we all say that we are grateful for every single day when Mum's doing fine, so we adopted the philosophy of "Carpe Diem" - seize the day!

Do you have an idea how long steroids can be given before serious side-effects start to appear (she's on intramuscular dexamethasone 3X a day)?

I hope you are doing well.
Best wishes,
Kris

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

HELLO,

sorry to hear you can't use the cyber knife. I think the long term use on steroids is more than 6 months, and maybe longer before side effects can be felt. I guess it's a trade off on quality of life.

I know there are various levels of steroids , so I would ask the doctor.

What about IMRT radiation? maybe that could be used to shrink the tumor a little, than maybe a round of cyber knife

Just ask lots of questions as you never know what can be done. What about Avastin? Another option to ask about

Kris · Posted: Wed Sep 06, 2006 1:11 pm Post subject: Re: GBM _

Dear bc,

Thanks so much for your reply - you're a real help for me!
I just received the news that my Mum's doctor reduced her daily steroid dose from 3 daily i.m. injections to 2. She already started to have fluid retention in the ankles, wrists and face... the doctor thought it was time to reduce the dose. I'm scared now whether it will not bring the pain back...I guess steroids reduce the intracranial fluid and edema around the tumor which is related to a reduction of pain. I hope my Mum could cope with the reduced steroid dose without having headaches again, at least until now, her fentanyl patch worked quite well and she had no headaches at all.
I will ask both about IMRT radiation (though now I have no idea what it is) and Avastin. Thanks so much for these hints, you give me hope.

How is your father doing?

Hope to hear from you soon,
God bless

Kris

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

Hello,

My dad seems to be doing ok. He is taking 2 steroids a day, and his short term memory was better.

but lately his reading has gotten worse, so my mom is asking to up the steroids to 3 a day.

I think the hardest thing to manage is the edema or fluid from the tumor.

I am not sure about long term use, but frankly if my dad has only 1-2 yrs managing the edema is probably more important than possible side effects that could occur 6-12 months down the road.

I haven't ask my mom how long you have to be on the higher dose to have some of these side effects, but worth asking and deciding if it's worth the change.

Kris · Posted: Tue Sep 12, 2006 1:12 pm Post subject: steroid effects

Dear Bc,

I'm so happy to hear that your dad's doing quite well. Your dad's symptoms are quite similar to those of my mum, she also started to have reading difficulties, although- very strangely - she's writing absolutely well, and she's writing a lot. She writes everything down that she can't talk about loudly, or she even writes post-its and "to do" lists for the family if she would like us to bring her something, to arrange something, to call someone, etc. Unfortunately she can sleep only 3-4 hours at night, I think it's because of 2 things: she doesn't want to waste her time on sleeping, and it is also normal to be scared of the dark night when we don't know if we would wake up...
Now she's having 2 steroid injections a day. I see that she started to tremble (hands, fingers, feet) and I think her muscle strength is also getting weaker, standing up and making a few steps is quite slow and hard for her. Doctors say it's all due to steroids which weaken muscles.
But, me too, I believe that managing these side-effects have much less importance than managing pain and edema around the tumor - at present, she has no headaches, no pain, thank God!
There are no Avastin trials where she lives. I think that she herself and all our family opt for her tranquility and peace only with palliative care as long as possible at home.
Will your dad have an MRI control?
All my greetings to you and God bless,

Kris

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

Hello,

I am not sure what a MRI control is.

My dad seems pretty stable right now and is talking about exercising again. He was a runner and wants to start up again. So that is good, as he has good energy !!

I know he gets MRI every couple of months, and the dr's say that the cyberknife continues to work for about a year 1.5 years... So I guess it is all about controlling the growth, slowing it down...

bc

Kris · Posted: Tue Sep 19, 2006 2:10 am Post subject: Re: GBM _

Hi bc,

Sorry for my English, I just wanted to ask if your dad's having MRIs regularly to check the actual status...
My Mum -as you know- had no treatment options, only palliative care with steroids. In this situation, there's no use of performing new MRIs, we would just be horrified of knowing where the size of her tumor grew during the past 2 months...she's getting worse and worse, now needs 24-hour-care, so we're having a nurse staying overnight to care for her.
I'm totally down.
Thanks for being there for me with your good news about your dad, I'm so happy! I wish him lots of strength to start running again!
Best wishes,
Kris

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

Hello,

Sorry you have to go through this. Question - when you mom was beginning to not do well, what symptons did she have? Was she sleeping more, low energy?? having trouble finding the words to say? Memory worse??

In 3 months dec will be here and it would have been a year. I am getting mixed results from my mom, but I think it's the stress and just trying to prepare yourself... The hard part is the unknowns, how long, etc

so the signs when things get worse are important to know and see.

Enjoy each day as you can... unfortunately we all have to die sometime... and someone else decides when...

Kris · Posted: Thu Sep 21, 2006 4:21 pm Post subject: symptoms on downslope

Dear bc,

The symptoms of my mum at the moment : incapacity to walk - or maximum a few steps; imbalance (she just fell off a chair 2 days ago) and general physical weakness, trembling hands, urinary incontinence. She does not sleep more, on the contrary: she sleeps less and less, only about 3 hours continuously during a night, she would like to write, write letters to us, to write out things that can not be expressed orally, but she writes very difficultly, and she's also having problems with the vision. She's got edema on her face and especially on the ankles - side effects of her steroids (2X1 i.m. injections per day).

She's either sitting in a chair or lies in bed. Fantastically, she has no memory problems at all, and she's very, very sharp, remembers everything and discusses with us brilliantly. But she gets tired very easily.

December - well, it seems to be so far for us ... she would turn 62 on
3 December...

How's your dad? Did he uptake running and other physical exercising?

I wish you all the best. Keep me posted.

Kris

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

we will see if he starts jogging in Dec. they head south for the winter, so he will do this in Florida. If he can.

It looks like the last MRI from july to Sept showed no change, a tumor is there, but seems to have not gotten bigger. one DR says that maybe 6 months left... But he thought the tumor had grown since the last mri in July, only problem is that he didn't have the july MRI to compare, so hard to tell.

So we go off of what my dad does and his energy level.
He is taking steroids and Chemo and seems to be handling all of this very well.

I will be seeing him this weekend, so will update later.

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