Brain Tumour Survivor

A site dedicated to leading edge treatment for brain tumours
It is currently Sat Dec 16, 2017 5:30 pm

All times are UTC + 10 hours




Post new topic Reply to topic  [ 8 posts ] 
Author Message
PostPosted: Sun Nov 14, 2010 10:32 pm 
Offline
Registered User

Joined: Tue Oct 20, 2009 12:54 pm
Posts: 25
Receiving the news that Dad had been diagnosed with a terminal condition, GBMIV, was surreal and very difficult to accept. The question I couldn’t get past was why? Why my dad, a man who hardly drank, who didn’t smoke, ate well, kept fit and rarely ever visited the doctor had developed an aggressive and fatal tumour? I’ve spent probably far too long pondering this question but thanks to research from the US and Sweden I found my answer.

Contrary to popular theories it has nothing to do with mobile phones, sleeping with electrical appliances next to your head or building up years of suppressed anger. No the answer is much simpler, it's just a virus, that can be caught perhaps from an act as innocent as the sharing of food utensils. I believe that infection with a common but not well known Herpes virus, Cytomegalovirus (CMv) can cause the growth of tumours.

I have prepared a summary of my research in an easy to read pdf document which can be accessed at http://cmvandgliomas.com/Assets/CMV_Workings8.pdf
I've also added below some answers I arrived at but I should make it very clear that I'm no medical professional so this is just my guess...best to ask your doctor...

Q1 How did I catch CMv (which led to a GBMIV)?
As a result of close contact with someone who was shedding the virus that allowed body fluids to pass from them to you, or from an organ transplant or from a blood transfusion.

Q2 Who did I catch it from?
Young children and people with suppressed immune systems such as those on chemotherapy are more likely to shed the virus than others but you might also have caught it from a new sexual partner.

Q3 Can I give CMv to someone else?

Yes possibly, especially if your immune system is suppressed as a result of chemotherapy for example.

Q4 Why did I develop a brain tumour when plenty of other CMv positive people don't?
I think CMv is like polio: when infected early in life there are no issues and the virus presents as a mild infection that you hardly notice, but when infected later in life the virus changes into the scary tumour causing version of the disease that leads to brain, breast, prostate, colon and ovarian cancer.

So there you are, this is unfortunately the tragic price we pay for living in this lovely clean environment. Viruses that we would all normally catch when we are little babies (as is the case India and Papua New Guinea) we may not come into contact with till much later in life with devastating consequences.

I'm sure you'll be able to find fault in this logic but it's the conclusion I've arrived at so thought it might interest a few of you as well.


Top
 Profile  
 
 Post subject:
PostPosted: Mon Nov 15, 2010 1:14 pm 
Offline
Site Admin

Joined: Tue Jul 19, 2005 10:12 pm
Posts: 260
Location: Melbourne
I think we need to be careful in using a "catch all" approach to either cure or cause. Cures that work for some will not work for others, and similarily the cause of someone having a tumour will also likely be different in each case.

For example, my wife's tumour was caused by a genetic abnormality on P53 that is a part of the Li Fraumeni syndrome that has plagued her family for generations. Many of her family, both oveseas and locally in Australia carry this gene and it makes them susceptible to many different forms of cancer.

This is not to say that your diagnosis is not correct in your case, but that there are many factors and many different circumstances that might well lead to a brain tumour.


Top
 Profile  
 
 Post subject:
PostPosted: Mon Nov 15, 2010 3:02 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Sorry to hear that your Dad has a GBM.

Apparently, two further studies did not support the findings of the original. Unfortunately, finding CMv in these autopsies proves nothing about the cause - although I can see why he would have wanted to investigate further.

It is true that viruses have been implicated in certain cancers, but there has been no evidence in my research to support this for brain cancer. David Servan-Schreiber, author of the book "Anticancer", implicates lifestyle as the greatest cause. If everyone has cancer cells, surely the focus should be on prevention.

No matter what the cause, I believe that the greater emphasis should be on prevention. This is what I am trying to do - to prevent recurrence. Rather than relying on some new medical treatment I can do this now. If it true that lifestyle can prevent 80% of cancer - then that is where my money is on.

I hope that his treatment goes well :).


Top
 Profile  
 
 Post subject:
PostPosted: Tue Nov 23, 2010 9:09 pm 
Offline
Registered User

Joined: Tue Oct 20, 2009 12:54 pm
Posts: 25
Thank-you for your replies.

Yes, I'm sorry I should have explained that this is a theory I think applies just to the majority of glioma cases and there will most definitely be exceptions as highlighted by some of the posts in this forum. I agree that lifestyle is the cause however I believe it is our super clean, uncrowded lifestyle that is the problem. I also agree that prevention is the goal. If CMV is the reason for the majority of brain tumours then a vaccine and immunisation program would be ideal however a CMV education campaign that advised of the risks of CMV and the ways in which infection could be prevented might be a great start. I’d love to see brain tumours become a disease of the past like polio.

Dad's Experience
I appreciate my Dad's experience is just that of one person so not at all significant but in my view it appears to be consistent with the ‘late CMV infection leads to tumours’ theory.

Dad was diagnosed on the 7th of September 2009. His neurosurgeon Mark Dexter (who's been excellent throughout) estimated that the tumour had been growing for 3 months.
When I came upon the theory that Cytomegalovirus might be the cause, Dad and I looked through his little pocket diary to see if we could determine if and when an infection took place. I recalled he'd been unwell on my mother's 60th birthday, Dad was so rarely ever ill that it had been memorable so we flicked back and found the following diary entries...

Saturday 23rd of May 2009 (Mum's 60th)
“Fever gets underway, no respiratory element.”

Sunday 24th of May 2009
“Fever buggers sleep.
Take paracetamol, helps sleep.”


Monday 25th of May 2009
“Fever still there"

Tuesday 26th of May 2009
“Wake at 10.45 am, fever still.
Work at home till 1.30pm.
No respiratory problems.
Headache, eye muscle ache, stainless steel tooth ache.
Variation in body temperature.
Went to work.”


These symptoms are consistent with a CMV infection and are just a little over the 3 month time frame estimated by the neurosurgeon.

After reading more about the virus and it’s transmission, a likely source of infection sprang to mind. My Dad's brother-in-law. He has multiple myeloma - cancer of the bone marrow, has had it for a number of years and was being treated at Westmead Hospital, receiving chemotherapy and blood transfusions. If my Dad’s brother-in-law were CMV positive (he says he doesn’t know his CMV status and doesn’t want to find out) then the chemotherapy treatment would have suppressed his immune system making it possible he was shedding the virus and could have spread it do Dad.

My Dad's sister and her husband (my Dad's brother-in-law) had arrived in Australia from Scotland in January 2009. My father had frequent and close contact (including the sharing of food utensils) with his brother-in-law, Dad was always over at their place, helping his sister and her sick husband set up a life here. Within 5 months of their arrival my father developed symptoms consistent with a CMV infection (as above) and three months later was diagnosed with a brain tumour.

I realise there are many possible ways in which infection may have occurred, I'll never truly know the source, or whether as is also possible his CMV symptoms in fact represented the re-activation of an earlier infection. But from everything I've read the “late CMV infection leads to tumours” theory appears logical and answers more questions than any of the other theories I've read to date. For example….

Questions answered by the CMV Theory


Why the developed world has a greater incidence of brain tumours than the developing world
Our super clean, uncrowded lifestyle in the developed world means late infection with CMV is more likely, leading to a greater risk of developing the tumour causing version of the disease. While in the developing world the majority of the population is infected in their early childhood when the disease is only mild.

Why males of high socio-economic status are most at risk of developing gliomas
Males of high socio-economic status are more likely to be CMV negative and catch the virus later in life (possibly because they live in clean environments and on average perhaps have less contact with children than females). Catching the virus late in life leads to tumours, according to the theory.

Why there are clusters of brain tumours such as that at RMIT
If gliomas are caused by a virus, Cytomegalovirus, then in the right circumstances, clusters of infection are possible.


I’ve probably bored you to tears, my family complain about this no-end so apologies for the length of this reply.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Nov 24, 2010 9:42 am 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Hi Bluefoot,

Thanks for sharing your theories.

They leave me with one obvious question. As a glioma patient its too late. Although I have never tested positive for CMv, lets say for arguments sake I had. What do I do now?

A vaccine is not going to help - its too late. My only option is the lifestyle changes and complementary treatments open to me now.

Unfortunately, your polio theory is not helpful either. For your Dad, patients or their relatives and myself, we are better focusing on the prevention in recurrence.

For the rest of population, who don't have brain cancer I agree that prevention is a worthwhile objective. Preventing CMv will not achieve the desired outcomes. If as the overwhelming evidence suggests, that lifestyle factors prevent chronic diseases, including cancer, then let's focus on these first. After we prevent 80% of the causes, then lets look at viruses and other factors.

I applaud your focus on prevention, just disagree about the causes and method. I, like David Servan-Schreiber, am trying to prevent recurrence too in those of us with brain cancer already as well as the general population.

I wish your Dad all the best :).


Top
 Profile  
 
 Post subject:
PostPosted: Sun Nov 28, 2010 5:18 pm 
Offline
Registered User

Joined: Tue Oct 20, 2009 12:54 pm
Posts: 25
What can you do now you believe a CMV infection caused your GBM?

(1) Attempt to enrol in the Brisbane CMV T cell trial for GBMs.
http://apps.who.int/trialsearch/trial.a ... 9000338268

(2) Think twice about dexamethasone.
From the little research I've done, Dexamethasone can significantly enhance CMV replication, thereby potentially shortening survival. Please be warned though that this is a very serious drug that must be managed carefully because mismanagement and withdrawing too quickly can have fatal consequences and I appreciate for many brain tumour sufferers it is simply a necessary evil.

(3) Ask your doctor about Valcyte.
Valcyte/Valganciclovir is a herpes anti-viral drug that has been shown to have some success in treating Cytomegalovirus. Although such a drug is no cure it might slow CMV replication and therefore perhaps tumour progression. They are trialling Valcyte in Sweden and California. http://clinicaltrialsfeeds.org/clinical ... CT00400322


Why healthy lifestyle changes will not prevent CMV related cancers

I absolutely agree that being healthy is a wonderful way to live, does wonders for your immune system and gives you the best chance of surviving any illness. However no lifestyle change can prevent your immune system from ageing and as you age the thymus (where T cells mature) decays and causes a sharp decrease in the number and type of T cells produced. Therefore if your immune system is presented with a CMV infection late in life when T cell numbers are on the decline it cannot conquer the infection the way it would have when you were young, leaving you more vulnerable to developing the tumour causing version of the disease.
(Recent research into breast cancer and CMV supports the “late” infection theory http://www.btsurvivor.com/bb/viewtopic.php?t=2185)

I believe that if the population were vaccinated against CMV rates of brain, breast, prostate, ovarian and colon cancer would decrease dramatically. No matter how much people drank, smoked, sat around on the couch and did nothing, they wouldn't develop CMV related tumours, they’d probably develop a whole bunch of other terrible conditions but not tumours.


Why is all this good to know even if you already have a GBM?

I appreciate you aren't interested in the 'why?' Kenobewan. My family couldn't understand my obsession with it either but to me it seems obvious. How can you treat a disease when you don't understand what caused it?

For example knowing that stomach ulcers are caused by bacteria not stress has meant a simple dose of antibiotics is all that is required to treat the condition. This has no doubt saved sufferers years of wondering why in spite of doing everything in the their power to reduce stress levels they still weren't improving.

Not knowing why you've been afflicted with an illness as devastating as this one can leave you feeling terribly alone and hard done by. Understanding that it's not some cruel twist of fate but rather just a consequence of our clean and uncrowded lifestyle must surely provide some comfort, however small.

If this theory becomes widely accepted there will not only be a great push to develop a vaccine so that future disease can be prevented but treatments for existing disease will be more targeted and better understood.

In my mind knowledge is power. Surely an informed decision is a better decision.


Dad's experience - T cell Experiment at Westmead Millennium Institute

When I became convinced of the CMV theory, I contacted CMV researchers in Sydney and asked for advice but no-one was prepared to give me any. Then I stumbled across an article about the use of donor immune cells to prevent CMV disease in the recipients of bone marrow transplants. I contacted the doctors involved and asked if they would be prepared to trial their technique on a brain tumour sufferer given recent research suggesting a link between CMV and gliomas.

To cut a long story short after an initial disappointing call advising me they couldn't help, I received another some time later advising that they’d managed to organise the approval of a one-off experimental trial and yes, could Dad please come in so they could take blood to grow up his lymphocytes for infusion. You cannot imagine how overjoyed I was to receive that call, one of those floating on air moments.

Dad had several infusions and initially it all looked so promising. The infusions caused no side effects and in fact Dad felt very good for a couple of days after each one. His first scan showed no noticeable progression, which we were delighted by however in time the tumour did begin progressing again.

In spite of our lack of success with this particular treatment, I have high hopes for the technique.

In the UK they have achieved great result using a similar kind of technique for Epstein-Barr virus (another Herpes virus) related tumours. One of it's successes is described in the UK Times article “Killer cells cure girls brain cancerhttp://www.timesonline.co.uk/tol/news/u ... 524811.ece

I think knowing what causes GBMs means the future is bright.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Oct 11, 2011 11:42 pm 
Offline
Registered User

Joined: Tue Oct 20, 2009 12:54 pm
Posts: 25
Just a quick update on the CMV = Cancer front. New research out of Sweden has shown that treating CMV with antivirals can slow the growth of brain tumours. As the antivirals are available now, it might be an option worth considering.

I've posted the details in the research section of this site: http://www.btsurvivor.com/bb/viewtopic.php?t=2248


Top
 Profile  
 
PostPosted: Fri Sep 06, 2013 9:45 pm 
Offline
Registered User

Joined: Tue Oct 20, 2009 12:54 pm
Posts: 25
New research showing the impact on GBM patient survival when treated with the antiviral drug Valcyte or Valganciclovir has revealed astounding results! For details please refer to my post in the 'Trial data, Research and Reports' section...http://www.btsurvivor.com/bb/viewtopic.php?f=5&t=2407

If I had to choose a treatment plan, I'd forget the horrid gold standard of radiation and chemo and head straight for the Valcyte.

This is really exciting, and for me totally logical as I believe CMV caused my Dad's GBM. Just a few years too late for him sadly.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 8 posts ] 

All times are UTC + 10 hours


Who is online

Users browsing this forum: No registered users and 2 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
cron
Powered by phpBB® Forum Software © phpBB Group
[ Time : 0.066s | 13 Queries | GZIP : Off ]