NOGGINS BLOG GBM (Glioblastoma multiforme)

I would like to welcome you to my blog. If you have any stories about Glioblastoma multiforme (GBM), you are a sufferer of GBM, loved one, friend or acquaintances of a GBM sufferer or simply have an opinion about GBM, alternative medicine, diets to boost the immune system or anything else that you would like to share about GBM, you are encouraged to post here.

Wednesday 18 January 2012


Title: The Association of the Bastard Disease that Nobody Wants To Join:  

Some call it GBM, some say brain tumour, others know it as brain cancer or grade 4 brain tumour/cancer.  It is spelt ‘tumour’ by the English and ‘tumor’ by the Americans.  Nonetheless, whatever the label or spelling ultimately it arrives at the same conclusion...it is unknown what causes GBM and there is no cure!  Before my sister, Lisa was diagnosed in August 2010 with this horrible disease I had never heard of a Glioblastoma multiforme, let alone had I attempted to pronounce it.  Now, sadly it rolls off my tongue with ease.  That's what happens when you are suddenly part of an exclusive club where not one of the members wants to belong.  The world and life as you knew it become a distant memory and a foreign sounding word embeds itself in your everyday vocabulary.  This club that you are all at once apart of equips you with strength, resilience, and an acting ability that most ‘A’ list movie stars would envy. For, the bright cheery disposition is at times required to alleviate fear and add confidence to the words “everything is going to be alright” while inwardly the heart slowly, breaks.  Unfortunately, membership does not furnish one with the adequate weapons to engage in battle against this bastard cancer of unknown origins.  The medical world zaps the mutant cells and hopes for the best, loved ones pray for a miracle and hope for the best. The victim puts faith in a medical breakthrough that will come just in the nick of time… and hopes for the best.  For want of a better scenario, it is somewhat like stoking a raging inferno with a chocolate poker… and hoping for the best.

With a lot of cancers the sufferer and loved ones can hope for remission.  They say things like “we can beat this’ “you are not going to die” and these words are true…it is possible...it can be done.  Waging war on that bastard disease, seeing it off with its tail between its legs, is no walk in the park. However, gladly, there are many survivors to tell the tale.

         
GBM is of a different ilk.  The sufferer starts off with colossal odds so monumentally stacked against his/her favour and they dramatically reduce with every passing minute.  If the victim of GBM is told that the tumour is operable then having a resection of the tumour site can buy more time.  Chemotherapy and radiotherapy will be offered, but chemo does not gel well with GBM. The possible reason for this is that with GBM the blood brain barrier is such that the chemo cannot infiltrate the tumour. Just fourteen months is the median for GBM sufferers that are lucky enough to have an operable tumour -if lucky is a word that could be used in this context, without considering it a complete oxymoron.  On the other hand, an inoperable tumour translates to a dismal 3-4 months prognosis.

Of course, when my sister was battling her disease, we made it our mantra to say the words of encouragement “you can beat this, you are a strong woman, GBM won’t get the better of you”.  For those of us that had researched GBM, we felt fake, she would never have known this, but all the same we knew as sure as the sun will set and rise each day that we were willing her to beat the disease through sheer want- that she would be the unexplained phenomenon.  After all, there was nothing of medical intervention to cling to.  

Pessimistic, I’m sure, is how others may have often regarded us during that time.  With all good intentions and an optimistic outlook, we were told of a neighbor, friend or family member that had a tumour twenty years previous and were to this day doing well.  As soon as the word ‘years’ resonates the receiver of the news is at once despondently aware that GBM is most likely not the topic of conversation.  Only 10% of GBM sufferers survive for five years after diagnosis.

The general public, as did I prior to my GBM membership, clump together cancerous tumours as one type- a single kind…a tumour is a tumour, they shrug.  Ironically, this is how they are medically treated.  GBM is able to be categorized as such, but for treatment purposes tumours cannot be distinguished to predict how they will react to treatment.  Therefore, all tumours are given the same course of treatment when it is likely that only a few will have beneficial results.  

For the past 4 decades there has been no good news for GBM sufferers and no rise in survival rate.  Cancer victims all deserve the chance of survival and we all warrant the right to have research conducted on the vast spectrum of cancers that are out there.  However, research funding for GBM is woefully low.  Such cancers as prostate or breast, to name a few, are on the rise in terms of survival rate and that is wonderful news, but what of GBM?  GBM in correlation to years of life lost is dramatically higher than for prostate cancer, yet prostate cancer receives a moderate amount of funding, while GBM funding remains severely low.

Well, as it appears that GBM will be allotted only dismal amounts of funding then my family and friends consider this to be a no-brainer …diseases are irradiated through research…research is conducted through funding…funding for GBM is procured through…what boils down to…public funding…public funding is raised through www.redwellies.info

We, Lisa’s family and friends have set up a charity called ‘The Lisa Wiles Red Wellies Brain Tumour Support Fund’ to raise funds for GBM research and at the same time increase awareness of this awful disease.  

My sister passed away October 13th 2011, leaving behind a loving partner and 3 wonderful children.  Those she left behind will forever know the name Glioblastoma multiforme.

For us GBM is synonymous with grief, anger, frustration, heartache, and longing.  We will remain fully fledged members in the club that nobody wants, or should have to join!  Perhaps, one day with help from the generosity of the general public, the association of the bastard disease called GBM will be closed to any new members.        


'Fat Cat eats Lab Mouse world'!

Isn't it sad when the profit margin of big pharmaceutic business cull the population by selecting the ones to live or die. Evangelos Michelakis a researcher at the University of  Alberta, Canada may have a potential cure for GBM.  However, this drug dichloroacetate DCA is not stirring up interest because it is not a big money spinner.  No one gets rich.  Yes! OK, we are not naive enough to think big pharma develops pills to simply cure the world of all its ills purely because that's what makes them feel warm and fuzzy.  We know its all about the size of the wedge, but looking at the world from a simplistic angle rather makes your gut wrench. In the realms of scientific Medicine it truly is a 'Fat Cat  eats Lab Mouse world'! 


  For the full story visit: http://www.foxnews.com/health/2011/05/18/big-pharma-ignoring-potential-cancer-cure/

Lisa was happy, she had found a soul mate and they had many plans for the future.  Glioblastoma stole this from them.

GBM


Hello all,

This blog is about Glioblastoma multiforme (GBM)


I would like to welcome you to my blog.  If you have any stories about GBM, you are a sufferer of GBM, loved one, friend or acquaintances of a GBM sufferer or simply have an opinion about GBM, alternative medicine, diets to boost the immune system or anything else that you would like to share about GBM,  you are encouraged to post here.  

August 10th 2010 Lisa was diagnosed with Glioblastoma Multiforme on the right frontal area of her brain. This came 
after an eleven day bout of excruciating headaches.  In time she underwent surgery that removed 100% of the visible tumour and at the same time had chemo wafers inserted into the tumour site.  At her MRI appointment in July 2011 the tumour appeared to be at the same stage as after surgery.  However,  new tumour was detected on the opposite hemisphere and was unrelated to the original tumour.  Sadly, this new tumour was inoperable.  Effects of the left-side tumour began very rapidly. 
In August 2011 the entire family, including kids, parents, sister, brother, husbands and partners, took a holiday together in Turkey following the frightening, new prognosis. It was during this time, not even a month since the new tumour had been detected that we noticed the right-hand –side of Lisa’s mouth had began to droop.  Within a week of returning home from our holiday Lisa’s speech became progressively slurred and she had problems in finding the correct words.  A few days later she was hospitalised for a week, as she had lost the use of her right arm and her speech had become increasingly worse.  By the time September came Lisa had begun using a wheelchair and needed more full-time care.  October 6th 2011, was the day that Lisa began to fall in and out of consciousness, and the day that marked the beginning of her final battle.  On October 13th 2011, at 12:07 our beautiful, daughter, mother, sister, aunt, partner and friend, took her final breath.