Glioblastoma Mutiforme stage IV for my mom. Any hope ?

hope4mom · New User Joined: 21 Sep 2008 Posts: 6

Hi,

I am writing this message with a deetp heart to reach out to see if some one is there with a similar experience.

My mother was diagonosed with Gliobalstoma Mutiforme on May 15 2008. She has a butterfly like tumor spread across the top of the brain crossing the brain. This is NOT an operable condition per the doctors as there is huge risk for paralysis.

Immediatly we started radition treatment, it is a whole brain radiation together with Chemo therapy. This was done for almost 40 + days. She was okay before the radiation + chemo but after 4-5 weeks after radiation + Chemo she is not able to take any food and she has lost speech. Now we are giving her food through N G tube ( tube through nose ). Her condition is not deteriorating , but improving slightly. She is now able to recognoize family members and give a nod or a blink for yes or no. Her left side of the body is also kind of numb. Her right side she can move.

The doctors are telling this is beacuse if the brain swelling ( edema ) due to the treatment. The swelling is pressing her brain nerves and causing this. They are giving her steriods and that is causing her blood sugar to increase. So we are giving insluin. In the meanwhile we did and MRI and due to swelling could not see if the tumor has come back. We did a blood test and it showed that the tumors have not come back. The doctors are telling it will take may be 3-4 Months for her to recover. But to what extent? We do not know.......

Any body there if they could share their experience it would be nice....

Regards,

Hope_for_mom

SiRen8 · Regular Joined: 04 Oct 2008 Posts: 18 Location: England

Hi,
So sorry to hear about your mum. It sounds very similar to my dads situation, apart from the fact that he hasn't had radiotherapy yet (6wks!)
My dads tumor is on the left frontal lobe and is inoperable as well. I must admit i am worried that when he does get his radiotherapy it will send him down hill. Did the Doctor's give you a hint at expected survival? They told us that my dad had 6 to 9 months with the treatment. You say they told your mum that it would take 3 to 4 months to recover! I hope it works out for you but at the end of the day you have to be realistic. The survival rate for this horrible form of cancer is very low.

SiRen8

Anguss · Regular Joined: 10 Sep 2008 Posts: 38 Location: England

Hello HopeForMom. You, me and SiRen are in very similar situations I think and I take a lot of comfort in having this forum to read and you guys to share with. I have written a lot on SiRen's thread about my mum. In short, she has the same diagnosis as your mum and she was ok(ish) but after a short amount of radio, she is extremely ill. Can't walk, talk, eat.... The team think this is a reaction to the radiotherapy and that, like your mum, she should improve in a couple of months. I can only pray that this happens for all of our parents xx

ksplat

Hello there
There is always hope! Where there's life there's hope. You always find hope, support & comfort on this forum. It has been a blessing for me to be able to post my Bro's story here & comfort & support others. Your experience with your Mom will help others here too!
I am so very sorry to hear of your Mother's serious illness & her current poor health. Please know my thoughts & prayers are with you.
Having been down a similar path to you I hope my words can give you more hope for your Mother's condition.
My Bro had few symptoms when he was diagnosed with a GBMIV Feb 07. He had a heavy sensation in his L arm & L leg. A stroke was initially suspected, but after a CT scan there was a notable "spot" on his scan. Although we were initally told that the tumour was inoperable during his 1st biopsy the surgeon was able to debulk some of the tumour (it was only 5mm in the beginning). Obviously the larger the tumour the more symptoms you will have.
Mark had 4 debulking surgeries in 19mths. He also tried radiotherapy for 4.5 wks (should have been 6 wks) & his symptoms deteriorated quickly during this time. The radiotherapy worsened his condition & was ceased. He was only given 2wks to live after this but after a further debulking he lived a fair quality of life although he was paralysed down his L side & in a wheelchair since May 07.
I pray your Mother's condition will continue to improve & I have heard that the radiotherapy will contine to act for a month or more after it is ceased. If the radiotherapy was able to obliterate at least 1 side of your Mother's tumour so she didn't have a "midline" shift I'm sure the chances of debulking would be better. What type of chemo is your Mother on? Temodal is the "goldstar" treatment for brain tumours.
There are often complications from steroids & high blood sugars can be one of those side effects. Although in saying that steroids have many benefits for brain tumour patients, mainly in reducing the brain swelling. I do hope the steroids continue to bring positive results for your Mother.
I'm only too happy to answer any further questions you may have, having been on a similar journey to you just recently. PM me anytime, I check this forum almost daily.
Thinking of you & your Mother.
God Bless & Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

hope4mom · New User Joined: 21 Sep 2008 Posts: 6

Thank you all for the kind support and reply.

Sorry for the late reply as I was in the hospital with her. My father and I take shifts to
be in the hospital with her. Even though most of the time she is sleeping cannot leave
her alone. We also have a family business to run to maintain livelehood.

Just want to share with you the facts...

She fell ILL May -15- 2008
Admitted and various tests continued for a month.

Radition was given for 30 days and chemo for 41 days.
The chemo was Temozolamid 120 Mg per day along with radiation

She had 40 radiations ( whole head radiation ) and plus chemotherapy an ended
on July -31-2008. During this whole time she was cheerful and took all the treatment in
good spirit.

After two weeks of tretment she fell ill. She could not eat talk or move. Just lying.
The doctors told this is beacuse of the edema ( or swelling ) caused radiation and chemo.

She was prescribed Dexona ( a steriod 8Mg X 3 times a day ). This increased her blood
sugar considerably. Then the dosage was reduced.

Now for past 2 weeks she is gradually improving in the sense she has opened her eyes....
and she is able to recognize people.. say yes or no by blinking. But her left side of
the body is almost paralysed and she cannot move.

Now she is almost 2 months over after her radition. The doctors are telling if her edema
does not come down in 3 months ( that is after one more month ) then it would be dangerous
situation. She may not survive.

I do not know what to do...I have consulted many doctors some say she may survive...and some
say at the max 2-3 months more ! Seeing my mother slip away in front of my eyes is a very
horrible state ! Now my father is also old and his health health is also not good...
I am taking him also for checkups and doctors are advising him not to take stress.

My mom had not married for 29 years.....then she married my father and they had a happy 30
years of married life...she is the beacon and guiding light for our family....and all on
a sudden this matter !

Just praying that all should go fine !

Hi Angie,
Can you please share with me the link of the web site which would give the end stages of this dieseas as you had
mentioned in one post ?

Also the surgeons are telling ( took 2nd and 3rd opinion ) that operation is very risky as may cause paralysis ?
The tumor is in the form of a butterfly and has crossed to two medians of the brain.

Temozolamid 120 Mg per day along with radiation

30 days radiation
41 days chemo ( Both Chemo and radiation at the same time )

hope4mom · New User Joined: 21 Sep 2008 Posts: 6

Temozolamid 120 Mg per day along with radiation

30 days radiation
41 days chemo ( Both chemo and radition at the same time )

After CT simulation treated with EBRT with a total dose of 5000 cGy in 30 fractions to the
whole brain.

Teletheraphy (3DCRT)
Intent Primary Stroke Radical concurrent chemo with temozolimid
1.Brain - 4000 cGy in 20 Fractions ( 200 cGy / # ) using parallel pair technique with 6 MV
photons dose prescribed MPD.
2.Boost - 1000 cGy in 10 fractions ( 200 cGy ) using 3 field technique with 6 MV photons.
Dose prescribed to 100% isodose line.

ksplat · Posted: Sat Oct 11, 2008 8:29 pm Post subject: Re: Hospice website

Dear Hope4Mom

I am so sad to read your update. So sad for the whole of the family. It is promising though to hear your Mom has picked up a little since her treatments are finished. Is your Mom continueing with chemo - Temozolamide? When my Bro had finished his 6mths of chemo he was then put on a monthly cycle of Temodal which was 5 days on the chemo, then 23 off. I feel this is necessary to keep this mostly aggressive & unpredictable tumour at bay.

The hospice website is as follows:
http://www.brainhospice.com/

This website will help you through the final stages of your Mom's illness. I do hope & pray she will be with you for many more months to come.

Thinking of you
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

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