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gbm hope!!

Shmay27
Posts: 8
Joined: Aug 2012

my father is now six months into his journey with a gbm stage four that was determined inoperable. on nov. 1st we went to get his mri and were prepared for the worst because he has become very symptomatic to the treatment of temador, avastin, lithium, and the various other drugs. we assumed the symptoms were from the tumor growing because its touching the part of his brain that affects speech and memory and both were greatly decreasing. after the mri we found out the treatments are working!!! his tumor had shrunk 25% from its original size!!! we were ecstatic to learn this amazing news and it really helped putting us back into perspective and back into positive thoughts and back into the fight! I hope hearing this will brighten your day and help u get back the hope that we were foolish to lose ourselves so soon! and if anyone has stories of the same symptoms as my father i would love to hear your story... its hard to find anywhere that really gives u enough information on what to expect. just wondering how much of his speech and memory loss are permenant or will it come back to him eventually??

~kayla

wanye
Posts: 11
Joined: Nov 2012

Hi Kayla

That is very encouraging the news about your father. My sister had memory problems but they seem to improve with time? For her its been worst before surgery and after, she has had two surgeries a year apart. But once it starts getting better it stays that way which is great. I'm not sure if tumor location makes a difference but it probably does. All the best and thank you for sharing good news its always useful to hear positive things in this journey;-) God bless you and your dad and family

Shmay27
Posts: 8
Joined: Aug 2012

Thanks ..god bless u and ur family also...this is literally hell on earth and its great to hear of good news as well as have it yourself because it is so elusive with this type of cancer.. Try and hang strong even though it is the hardest!!

bugs_mommy
Posts: 24
Joined: Dec 2012

My husband got diagnose in april 2011 , he was having headaches that just would not go away, he had an operation, did the usual radiation, and the chemo pills, everything sEemed to be looking good, then one day at home he started having seizures, so at the hospital they said he had 8 plus seizure all together,and he stayed out of it the whole time, they said it was caused by pressure in his brain so they put him on 4mg of decadron, and then september 2012 his mri showed regrowth so they did another surgery, this time it affected his speech, having hard time saying what things where or what he wanted to say, and it affected his walking, well here we r today, noticed on dec.25th everything was getting worse he was sleeping all day needed of help walking, so took him to the hospital and they showed us his mri from dec.28th and his tumor grew so large and fast, they are giving him 12mg of decadron now instead of 4mg to try to get the swelling down then the doctors should be talking with us today aout our options.now my question is itt worth it to have athird operation and risk more damage to his speech and mobility or leave it run its course and let him be happy ?? he is only 29 and two beautiful little girls, any dvice would be greatly appreaciated thank u :))

maria isabel
Posts: 19
Joined: Dec 2012

hi there,

us too have been living a nightmare, mum was diagnosed a year ago, after her very succesful operation she started temodal, in july she went on holidays to portugal as she was feeling so well but she had an scan to see how was it going and they found that the tumour had acome back and also there was another new tumour in the opposite size of her brain!

they did radiosurgery on the new tumour as it was inoperable and they stop the temodar, (she had finish the radiosurgery) a month after the radio surgery they did another scan to tell us that things were terrible, to prepare for the worst....

then the oncologist started to give her AVASTIN with BAvazicum, every other week as we had nothing to lose and at the begining of dec in her last scan they told us that both tumours have shrunk!! to keep going with the AVASTIN!

so this is a roller coaster, we also take homeopathy treatment, mangnesium, vitamin c, B 12, oligoelemtns, and a diet with no sugar, verly low salt, no red meats....

there is hope, my mum has had a lovely chritsmas, at the moment she is desoriented not as good as she was in june or july but i hope that she will get a bit better.

the manin thing is that the tumours have shrunk and that every days is hope that they found a new medicine to treat this horrible monster GBM

 

take care and lots of love

m isabelx

mccindy
Posts: 82
Joined: Jun 2013

It's great to hear that your mother is doing well and having shrinkage of her tumors on Avastin.  I've heard very good things about that medication, and the fact that it affects the tumor's blood supply really makes sense as to how it works to stop tumor growth and even promote shrinkage.  I hope it continues to work well for your mother and that she stays well for quite a long time!

believer2014
Posts: 1
Joined: Jan 2014

My mom was just diagnosed with High Grade GBM after her MRI. She had a preliminary biopsy done and they said the final confirmation of the biopsy will be next week. We are preparing for the worst and are praying every day for God's divine intervention. Has anyone you know survived this horrible disease and led many years of survival? My mom is only 78 and the thought of losing her pains me unimaginably. Her body is strong, all her vital signs are good...I need some hope and prayers out there that my mom will beat this. Thank you for any comments you could share.

believer 2014

sadinholland
Posts: 236
Joined: Apr 2011

Before my husband's surgery in 2010, they thought his tumor was a GBM. It came back Anaplastic Oliogodendroglioma grade 3. He is doing ok. Taking CCNU right now because of what was seen on a prior MRI. Good luck to you and God Bless!

Ayline
Posts: 5
Joined: Feb 2014

Hi, did you get your mom's results? How is it going? My father, 77 years old, underwent surgery in December then within two weeks started chemo and radiation. His GBM is on the left temporal lobe. Knocking on wood, he is doing well, he still has a few sessions of Radation left which would make a total of 33. He finished already the 7 weekly chemo. He is mostly very sleepy and likes to stay in bed a lot, but also pushes himself to do exercises at home and help mom around the house chores. His memory and speech are the most effected.

Most importantly don't loose hope. We experienced all sorts of emotions, fear, hopelessness, thinking this is the end of dad... but no, keep fighting, there is a chance, it's a hard journey, a lot of doctor visits, a lot of medication, a lot of dexa injections, but there is hope. Every body reacts differently, there are a lot of stories out there with good outcomes 2-5 years of survival along with not so good ones, I have a colleague who lost her mom 18 months after the surgery, but take it one day at a time... one day at a time, this is very important!

Let us know how it is going.

Ayline

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