Some input wanted for new Brain Tumor Foundation

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Some input wanted for new Brain Tumor Foundation

by SmittysLove on Wed Nov 14, 2012 04:03 PM

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Good Morning all you brave, tired, sad, angry, loving and loved, blessed people.

I traveled the journey with my beloved husband for 18 months. Boy, did I learn alot.

Turning that knowledge into real help for people effected by BT's is now my 'journey'.  From time to time I will need your help..as you know, these journeys cannot be trod alone!

First, a short outline, then my first question.

My husband comes from a small country with a very small population and a HUGE incidence of Brain Tumors, mostly AA and/or GBM.

Too emphasis this, I have a list of people who are 'first generation' friends or acquintances of ours..meaning that either one or more of my husband, myself and my son personally know the person or an immediate family member.

With out stopping to think I listed 14, right off the bat! And this is in a small community. BTW, I had noticed this years before my husband was dx'd.

How many of you, prior to your journey, could list 14 people with whom you are personally adquainted that have/had GBM?  Pretty shocking isn't it?

I am working with the local Cancer Society putting together a Brain Tumor Foundation to help both people here who are affected and to hopefully help the greater fight. (As small and fairly isolated - population wise - I hope to eventually get one or more of the research centers in the US to study us.) 

But there is much work to be done before that point.

So, I may from time to time, come back on this board to ask for input from you.  And feel free to contact me through this board if you have anything you think might be useful.

The general areas we are developing are:

Information and education.  Too many people here go un-diagnosed until shortly before death, some are dx'd post mortem.

Local Medical Community.  We have no specialists for BT's.  All patients must go to the US.  The goal is building a coordinated network between certain of the local medical community and the centers in the U.S.  We had this via an oncologist in the US whom we went to..it was irreplaceable!

Help of all kind for Patients, Caregivers and Family.  As you can imagine this comprises ALOT! Too much to detail here..but you all know (and input here would also be helpful)

Finally, Research.  As I briefly mentioned above.

TODAY, I would like your input on the medical centers you think were particularly helpful to you.  i.e. Duke, M.D. Anderson, etc. 

This board was my life line in many ways during our journey. I could not have made it without you! My way of passing it forward is this Foundation, so sorely needed here. I know you will help, as you all always do.

 Smitty's Love

Husband dx'd 6/30/2009 earned his wings 1/2/2011

RE: Some input wanted for new Brain Tumor Foundation

by jon4156 on Thu Nov 15, 2012 02:33 AM

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I certainly have some strong opinions about charities and foundations and usually pinch a few nerves in other people by sharing them, but since you asked.

It's not clear to me that information/education is going to have any impact on shortening the time to diagnosis before death.  Even here in the US, diagnosis is not determined in the vast majority of cases until GBM is well developed.  While I am an advocate of a yearly whole-body MRI, it simply is not done because of cost and doctors don't order a CAT or MRI scan unless symptoms justify it.  Additionally, BT's such as GBM are aggressive fast growing cancers which typically do not show symptoms until the tumor is well developed, which happens in a very brief time period of 2-3 months.  So even if you had a full MRI scan in January that showed no evidence of brain cancer, it would be no guarantee that you wouldn't develop GBM in July.

In regards to caregiving and research, my advice is that you concentrate on one or the other but not both.  Nothing makes me more angry than charities/foundations that espouse cancer research but pay out meager amounts of their budget for it, or worse, have salaries and benefit costs that are more than what they spend on research.  Check out my website at

http://www.gbminfo.com/charities/charitydata.cgi

to see how many well charities have performed rather poorly when it comes to providing money for cancer research.

If you stick to one well defined mission statement you will be much more successful at performing that mission.  If you want to do more things, set up a separate charity/foundation with that other thing as it's one well defined mission statement.

 

RE: Some input wanted for new Brain Tumor Foundation

by SmittysLove on Thu Nov 15, 2012 04:43 AM

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Thank you for your reply, jon4156.  I was the caregiver for my husband from his diagnosis of GBM through his death, so I do understand your points.

You may have slightly missed my point though.  While we are close enough to the U.S., we're not the U.S.  That is a plane trip, not a drive, away.  My husband and I were able to basically live in the U.S. for the 18 months of his journey because we had a residence there, and our son was in university there.  My husband only went home twice in the 18 months in order to receive very, very good treatment that most definitely extended his survival (upon dx we were told "days" without surgery ASAP). Like you said, far along and growing fast. For the rest of the time he recieved further treatment that gave him, and our small family, at least a year of high quality life during that 'gift' of 18 months.  

Proper treatment for BT's isn't available here. A friend of my son's wasn't so lucky, the Drs. here dx'd a brain tumor then put him in the hospital to observe him. They observed that he died within a week from the edema, of course he did not recieve any treatment for the brain tumor. This is what we are changing.

Regarding information and education, it is very beneficialhere.  It leads to more dx's and earlier dx's. 

Way too many cases go undiagnosed until after death or way to late.   This is partially due to a lack of medical expertise for BT's here, misdiagnosis or frequently, because of not seeking medical care soon enough. Many patients who are diagnosed at a point where treatment would extend survival, and offer a quality of life (important not only to the patient, but to the family) don't have the means to go to the U.S. This is where much of our work comes in.

Coordinating treatment between certain of the medical community here and some in the U.S. has already made a difference for some here.

This is not a 'charity' Foundation.  The point of this is to facilitate proper care for Brain Tumor patients, their caregivers and family.  I receive NO compensation, the founder and head of our small country's 20 year old Cancer Society, which is quite a successful one, also receives NO compensation. 

As to the research, which I will briefly cover later, WE do not do the research.  The interest is from current BT research programs at large medical centre's, regarding our unique situation. My travel, time and efforts regarding this is funded from my pocket, sometimes with help from a friend who has an air freight business that can accomodate passengers  (yes, sometimes I'm 'cargo' LOL)

Since the only medical care for cancer treatments in this country is in the capital, the Cancer Society has built and operates a beautiful and very comfortable facility to house those patients who live too far from the capital to travel back and forth during their treatment.  However, there IS NO treatment here for BT's without the coordination with wonderful Neuro Oncologists and Neuro Surgeons in the U.S. that this new BT Foundation is building and expanding.

I'm well versed in CT scans and MRI's. (I've had 26 CT scans for a serious illness that is now gone, and of course my husband had quite a number of MRI's of his brain, I know the dates of each by heart, I just prefer not to count them.) The MRI equipment here is not up to date - you can't evenget a full body scan here - and CT's are sent to the U.S.  for conclusive reading..  Takes 2 to 3 weeks to get those results back!  So making it possible for suspected cases to be flown to the U.S. for proper, quick Dx procedures and urgent surgery makes a HUGE difference.

We don't even HAVE a neuro surgeon here!

The caregiving, is actually the biggest challenge. But in it's own way well suited to our population.  Education also is key here.  We don't have Hospice.

The research is a goal, which I have already started work towards, because here we are actually a rare find in research due to geographical circumstance and the high brain tumor numbers are in a non-transient population - people who have lived here all or most of their lives.

As it happens. I have well placed medical research contacts in the U.S. Most, not all, from 8 years of successful 'guinea pig' treatment I received at a research centre for a rare (350 cases/yr in the U.S. - that's no typo), usually terminal, opertunistic infection, not a cancer.  I'm fine, strong and healthy because I happened to get the best treatment for my problem available. My Dr. said, (I'm) "one of the very few cases we can say are cured".  As one of those 'few' they remember me! and have been a huge help.

Now,  I'm hoping to get a good number of responses about the different medical centre's with which the members of this board have had experience.  It's a diverse group here, and I want to hear your comments and experiences. How well you were worked with, Drs. you like, etc.  Information is key.. and I can't spend all my time on 'cargo flights' to get it.

We have the seeds growing, and my eye is on expanding in any direction we can that will help the brain tumor patients here.

Joyce

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