Glioblastoma

Hi, My dad was diagnosed with a Glioblastoma brain tumour last week. 3weeks ago he had a brain haemorrhage which he recovered well from considering the size of bleed. On the CT and MRI scans he had a tumour was identified. Last week he had the tumour removed and the results were that he has Glioblastoma grade 4 on left frontal lobe. The only symptoms prior to this was his hand would go numb during the early hours of the morning which would wake him. This was for approx 5 weeks. No headaches or anything. Obviously we were shocked and devastated by this and having now read a lot about it very scared by the survival rates. I have been reading lots of successes which I am pinning my hopes on for my Dad too. He goes this Thursday for an appointment about radiotherapy and chemotherapy. He is 69 but very fit and healthy up to 3 weeks ago! Does anyone have a comments regarding types of treatment or drugs used which could help before we have appointment? I have read a lot about how the cells mutate and adapt against treatments and it seems a combination of treatments at the same time seems to be successful for some. He is low at he moment from the news on still recovering from op so trying to boost his moral about diagnosis. Comments much appreciated. X

On Jan 13, 2013 7:54 PM Gstaton wrote:

Hi, My dad was diagnosed with a Glioblastoma brain tumour last week. 3weeks ago he had a brain haemorrhage which he recovered well from considering the size of bleed. On the CT and MRI scans he had a tumour was identified. Last week he had the tumour removed and the results were that he has Glioblastoma grade 4 on left frontal lobe. The only symptoms prior to this was his hand would go numb during the early hours of the morning which would wake him. This was for approx 5 weeks. No headaches or anything. Obviously we were shocked and devastated by this and having now read a lot about it very scared by the survival rates. I have been reading lots of successes which I am pinning my hopes on for my Dad too. He goes this Thursday for an appointment about radiotherapy and chemotherapy. He is 69 but very fit and healthy up to 3 weeks ago! Does anyone have a comments regarding types of treatment or drugs used which could help before we have appointment? I have read a lot about how the cells mutate and adapt against treatments and it seems a combination of treatments at the same time seems to be successful for some. He is low at he moment from the news on still recovering from op so trying to boost his moral about diagnosis. Comments much appreciated. X

Hi Gstaton,

Sorry to hear the news about your dad.  February 28th of last year I had a large tumor removed from my left parietal lobe, turned out it was malignant -- GBM IV, same as your dad's.  I underwent 33 treatments of proton radiation and seven months of chemo (Temodar), beginning in April at 140 mg, then about a month off then five 300 mg doses a day for five days, (the 5/23 schedule which you may have heard about); had 300 for three months, then 400 for three months.  So far the tumor hasn't recurred so the tumor site is being monitored by MRIs.  I had an MRI on the 4th, saw the doc on the 10th, results were somewhat vague so I'm going back for another one.  Thus far about outside of being whipped from the chemo I seem to be holding my own (chemo takes months to wear off).

You shouldn't pay too much attention to the statistics regarding survival of this kind of cancer; I ignored them from the beginning.  I'm a person, not a number.

I had surgery in Riverside and followup treatment at Loma Linda, both are in Southern California (and a stone's throw from our house).  Loma Linda is considered to be one of the top cancer treatment centers in the country.  I met people there from all over the country.  Here's a link to the James Slater Proton Center:

http://www.protons.com/protons/index.page

Good luck with your dad and let us know how we can help :)

Hi, my husband and I have been battling glioblastoma since May of 2009.  We have a new one now that is very different.  The best part about your dad that it is in the frontal lobe like my husband was the first time. He will make it through as long as he have the family support.  My husband started off with temadar first.  Good luck Stephanie.

Thanks for your message. We are in the uk, but all the best forums are US ones! It seems most people have radiotherapy and chemo at the same time. Just want to get a picture of things that are around and that seem to work for other so we have lots of questions when seeing the oncologist. He is recovering well from the op and a very fit man so we are all positive we can beat the horrible statistics.

Hi, I am new to this forum and board.  Although I have been reading information on this site I have never joined.  Now, I feel like this avenue will help me the most to gain information and support.  A little background:  My husband is 42 and was diagnosed in June of 2012.  GBM, right frontal lobe.  95% removed.  Has gone through chemo/radiation and is now on the high dose of chemo 5 days on 23 days off.  He has responded well except for the past two chemo times.  Both times was very nausea. That said, as far as treatment choices go. I am constantly on clinicaltrial.gov . They give you trials available.  There are two that are very promising that I have been following that might benefit you since you are a newly diagnosed patient.  One is ICT-107 and also Avastin in conjunction with temador and radiation at the same time.  We have a friend on that one and he has gone 20 months with no recurrent. Those 2 treatments choices are only for new patients waiting on chemo/radiation. Might be something to check on.   Currently, my husband has shown no recurrent but his last MRI 6 weeks ago showed some changes that they could not clarify. We go Thursday for another MRI. Praying it is just swelling or scar tissue.  Also, I know how hard this is on your dad and the family.  My husband has a great attitude and never lets this get him down.  Has been a great inspiration to everyone who knows him.  Like someone said, don't look at the stats.  They are only numbers and every person is different and one of our love ones might be the one to make a different in this cancer.   Hold on to hope and faith.  Our family motto is :  We Fight Together, We Win Together.  Best of luck to you and your family.  You are not along.       

hi .... i'm also in the uk

am so sorry you find yourself dealing with this but i think you'll find this forum very good and helpful and supportive

there is a good forum in uk called bt buddies ... have you looked at that? some of the info may be upsetting initially but there's a lot that's useful

best wishes and good luck

carla

 

 

Thanks Carla, I have found this website much more useful so far than any of the UK ones. Thanks for the tip, I'll look at BT buddies. On here I find much more positive stories, unfortunately I find the UK ones upsetting. Still holding out that treatment will slow things down. I have been looking a clinical trials in the UK. One in particular is IMA950. Anyone know much about this? Thanks Gemma

Thank you for the info. The clinical trials sound positive I will have a look. We are in the UK, I wonder if they allow people from different countries in? There are only a few in the UK but mostly for re occurring Gemma x

On Jan 14, 2013 3:56 PM Gstaton wrote:

Thanks for your message. We are in the uk, but all the best forums are US ones! It seems most people have radiotherapy and chemo at the same time. Just want to get a picture of things that are around and that seem to work for other so we have lots of questions when seeing the oncologist. He is recovering well from the op and a very fit man so we are all positive we can beat the horrible statistics.

I am also in the UK. This and cancerforums.net are the best sites - btbuddies gets little traffic. The Macmillan site has a brain tumours section, but it is so badly laid out and imepenetrable that I gave up!

The treatment in the UK is the same as elsewhere - a standard 30 daily sessions of radiotherapy with temozolomide chemo (Temodal, called Temodar in US), followed by at least 6 months of 5 days a month of chemo (at a higher dose). Most people tolerate the chemo/radio very well, just get tired towards the end. 

I think King's College Hospital and St. Thomas's in London are doing a clinical trial of a GBM vaccine for newly diagnosed patients

Hello Gstaton

My dad was diagnosed with GBM on 5/1/2011 in his speech center on the left side (worst place for GBM). 55% resection, 6 weeks radiation, and 5 cycles of temodar. Was tapering down dexamethazone and was at 2mg daily as of four days ago.

We found that if you want him to have every month on earth you can then go for radiation. In our opinion though we wish we wouldn't have because we would rather shoot for long term survival. Radiation necrosis has caused all sorts of problems for Dad since his treatment.

We had some scary MRIs in the months following initial treatment. Since starting a restricted calorie ketogenic diet 15 months ago every MRI has been stable and sometimes it even gets a bit smaller.

We find the ketogenic diet works great for our family and we've adapted our family meals to work with it. It is a BIG commitment. Usually, if a cure sounds too good to be true, it is. This maintenance regimen is tough, but the only sure fire bet to prevent brain tumor growth IMO based on research I've done from multiple continents. Dad has been thriving on it- despite wishing to recover from the deficits caused by radiation and surgery (speech and balance).

We've talked with countless doctors, considered dozens of immuno therapy treatments, but this has been working for us. 

That said, we were trying to get off steroids completely and just had a scare this week and are waiting for MRI results. This has happened before when we tried to get off them. The MRI indicated necrosis based on a profusion study, and I’d guess that's what it will be, but wanted to tell you of the scares as well so you get the full picture. This diet MAY be working as a maintenance plan, or we might just be lucky. The research suggests it must work. 

My word of caution is that you should be careful what treatment you do now because it will affect your long term quality of life. Fortunately his tumor is in a MUCH better spot that should cause much less neurological deficits.