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GBM IV

mike999
Posts: 3
Joined: Apr 2012

hello every body,

This is my first post.

I am looking for a little guidance and help with my ongoing treatment. I live in England and the Americans seem to be a little more informed and open about this cancer that I have.

Any ideas or knowledge on how to beat this invasion of my body will be most gratefully received.

I am a 54yr old male and in good health apart from this tumour. I am fit as I trained by running, rowing, cycling and lifting weights prior to having a seizure.

On the 21st of February this year I had a seizure whilst driving on the Freeway at 70mph.

I was lucky in that I only sustained minor injuries and no other person or vehicle was hurt or damaged. It could have been so much worse.

That set a train of investigation as to the cause of the seizure. I had an MRI scan on March 9th and this showed a tumour. On 30th March I had a Craniotomy and 5 hours of surgery to remove all of the tumour which was in the right frontal lobe and was about 2cm in size.

Last week on 10th April I was informed that it is Glioblastoma Multiforme. A grade IV.

I am about to be measured for a mask in order that I can start a course of Radiotherapy and combined Chemotherapy. This will start in 10 days or so.

I know that this is a tough one to beat but I am going to give it all I have, I have a loving wife and two children of 17 and 20 who are a delight to us both and I need to be around to guide them in this stage of their lives.

Let me know what you did and how it helped please.

Love and best wishes to you all,

Mike Allen

mighty6
Posts: 47
Joined: Sep 2011

Mike,

Sorry to hear your diagnosis. It was shocking and sad for us at the first too. But knowing that you are not alone makes you feel better hopefully. Many people are putting up a good fight and are winning each every day.

It's been more than 9 months since my husband's dx. He is still at good shape, with KPS of 100! This is a long and hard journey, but so far so good for us. Looking back ,several things might worth mentioning:
.diet change. he is mostly on vegetarian diet, as organic as possible. with only soy bean milk and fish for protein.
. relax, his schedule has changed a lot. Lots of mediation and fun time with family
. try to be as aggressive as possible when it comes to treatment. Instead of 5/28 Temodar after radiation. we are on daily low dosage Temodar and Celebrax.
. I, as a caregiver, have read a lot to educate myself. I also join several online supporting group to connect with fellow patients, caregivers, experts, advocates...you will find that knowledge is the power. I don't push him to read those if he does not want to.

During radiation treatment, you might experience appetite and taste loss, you will most like lose some hair too. but don't worry about them. all of those are temporary, they will come back eventually, several weeks after the radiation completed.

The following several websites are helpful for us:
http://www.virtualtrials.com/
http://www.gbminfo.com
http://clinicaltrials.gov/ct2/search

Wish you best luck!

-- Jane

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

I have AA3, and was diagnosed October 20th, 2009. The tumor was the size of an egg, and it had a cyst on the front and back of it that had to be removed due to the fact the cyst was also containing cancer cells. I had a total resection on October, 29th, 2009 and then completed the radiation and chemo (Temodar 5/28). Other than a small cyst that showed up in the second MRI post op, there has been no re-growth of the tumor and the cyst has remained the same size. It has been 2 years and 6 months since I was diagnosed and had clear MRI’s. After my last MRI in January they let me go from having MRI’s every 3 months to only coming every 4 months. Doesn’t sound like a big difference, but it is a huge step. I know AA3 is not as aggressive as GBM IV, but I just wanted you to know that it is possible to fight and win! There are a lot of people on this site that I get encouragement from when I need it, and sometimes when I am not even looking for it. So I want to say WELCOME, and all you have to do is ask a question and if anyone on here knows the answer they will let you know. Good luck as you begin this journey, keep your faith, and you will be in my prayers!

Scottgri
Posts: 44
Joined: Mar 2012

Imwas diagnosed in April 2011. Those were scary days. I insisted that I was a sample size of 1, as are you, don't let the stats bring you down!!!

Don't be shepherded in a direction you don't want to go. I now know of many people who accepted standard care because it's all they knew was available due to incomplete answers from doctors. There are other options and treatments in the clinical trial space that work! They are not for everybody, but i am damn glad i sought it out and found a plan that works.

I am back to work and living life as normal again, started building a new house and am moving in next month.

I got enrolled in a phase 2 trial at Duke University, i am an IT guy, not a doctor, so please verify everything you hear/read with a qualified doc; that said, I credit Duke with saving my life. Here, standard care is surgery, radiation and chemo, usually Temodar. My trial added Gliadel wafers (another surgery), and Avastin every 2 weeks, for twelve 28 day cycles. I get mid-cycle dose tomorrow and have 3 more cycles to go. The docs will have a long term plan for me as we get closer.

Literally 1year to the day from my first surgery I had an MRI, perfectly clean. I go to Duke every 8 weeks for a scan and checkup.

I understand UCSF has made some progress with vaccines. I had a positive reference for Duke, checked it out, and decided it matched what i wanted, a better chance for long term surival with some risk in the trial. For me, it's working. My 44th birthday is next week, looking forward to many more happy days to come.

The Temodar is kind of harsh, but worth it to me.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Hi, Mike. I'm sorry to hear of your diagnosis, but so happy that they were able to remove the whole tumor.

My husband was diagnosed with diffuse intrinsic pontine glioma in January 2011. Diagnosis was from MRIs as being in the pons, biopsies and surgeries are not an option. He completed his radiation therapy in April 2011, and chemo will be our last resort if the cancer grows as it isn't very effective for this type of cancer.

Just a few little tidbits for you. Let your doctors know of any side effects from the radiation and chemo- there's no need to suffer through the nasty side effects if the docs can give you something. My husband had terrible nausea from the radiation. He was given a medication (zofran) for it, but it caused terrible constipation, which in his opinion, was much worse. I had to learn how to do a special massage to help and it took a long time for the drugs to get out of his system. He was also put on steroids to help with some swelling, and that caused the classic moon face and increase in appetite...and reflux. He is still dealing with heart burn, which never used to bother him at all before all of this. If any of the drugs they give you disagree, don't be afraid to speak up and ask for an alternative.

The only other thing I'll mention is try to stay healthy. I think you are at a huge advantage because you were in such good shape when you were diagnosed. Not long before my husband's diagnosis, we started on a paleo/primal diet, and we both believe this to have helped him tremendously. We've been fortunate the his cancer is stable, and just yesterday they told us that they think it may have shrunk a little.

Best wishes to you! I hope that your treatments aren't too bad :)
Leslie

ourvictory
Posts: 3
Joined: May 2013

# 1 this is my third year after being dianosed with  my GBM IV on 9/2010. Beside standard treatment  am taking blue scorpion venom, positive attitude and as many treatments that seem unharmful healthier eating that I was dalready doing before my diagnosis, eventhoughif not all of them are  sufficiently credible but involve some spending that I  limit because I  cant work anymore.

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