Anyone Can Help?

lorraineh

13th January 2010 - 05:26 AM

My friend's mother, who is 70 y.o, was diagnosed Glioblastoma grade IV in Octobaer, 2009. She is hospitalized in Beijing now, but the treatment seems not so effective. It is very urgent, we are here to seek if anybody can help us with providing some clues of well-known hospitals or doctors on this disease or any good news of more advanced treatments on the diagnosis to prolong her life?
We will be very grateful!

rpenner

13th January 2010 - 07:27 PM

This site does not seem to be associated with misinformation. It has a map (click on Centers of Excellence) listing the hospitals all over the world which are affiliates for one particular type of procedure. But only a doctor can tell you what the merits are of a particular type of procedure is over another.

http://www.irsa.org/glioblastoma.html

For a class IV brain tumor, the tumor is a serious risk to life and may have already damaged parts of the the brain that do not recover well. But even with good treatment, a patient's general health and youth and removal of over 98% of the tumor (via surgery, radiation, chemotherapy, etc) are major positive factors in recovery. Your friend's mother, may survive the cancer (with excellent treatment) or may not, but since the cancer has already penetrated other tissues in the brain, even excellent treatment is no guarantee of success.

http://en.wikipedia.org/wiki/Glioblastoma_multiforme

adoucette

13th January 2010 - 08:44 PM

QUOTE (lorraineh+Jan 13 2010, 12:26 AM)

My friend's mother, who is 70 y.o, was diagnosed Glioblastoma grade IV in Octobaer, 2009. She is hospitalized in Beijing now, but the treatment seems not so effective. It is very urgent, we are here to seek if anybody can help us with providing some clues of well-known hospitals or doctors on this disease or any good news of more advanced treatments on the diagnosis to prolong her life?
We will be very grateful!

I'm very sorry to hear this and I certainly wish I had encouraging news to give you.

My wife died from GBM about 2 years ago at the age of 54.
She was diagnosed within two weeks of the first symptoms showing up and was operated less than one week after diagnois and BCNU polymer wafers were inserted at the tumor site.
She underwent 30 treatments of radiation therapy and then the current approved treatment of Temozolomide (Temodar). She relapsed in less than a year and we went through two other treatment regimens, each one with increasing side effects and shortened positive impacts. We gave up after the last treatment and entered her into hospice care for the last several weeks of her life.

Our doctors were quite frank with us and said they were hoping they could help her to get at least one year of relatively quality life.
She survived a total of 18 months from diagnosis.
The 50% survival rate at the time of her diagnosis was 14 months.

I know this is bad news, but sadly there is almost no good news associated with GBM, and at your friend's mother's age, the prognosis is typically worse than average. If she hasn't already had surgery then its probably too late to do so and 6 months is typical survival time without surgery for GBM IV. But if she has had surgery, then she's most likely already missed the opportunity to get into the few clinical trials that are trying to come up with a vaccine.

More here:
http://www.physforum.com/index.php?showtop...ndpost&p=178324

There are many hospitals running clinical trials in the US, Duke, Mayo, UAB etc.

See this site for current trials (you can refine the search to narrow the choices):

http://clinicaltrials.gov/ct2/results?term=glioblastoma

Sorry.

Arthur

adoucette

14th January 2010 - 04:54 PM

Your friend's mother is in China, so anything I post here might not apply.
It's important to understand how the system works where you are.

In the US, you get the STANDARD treatment for GBM unless you opt out of the standard treatment.

That is surgery (if the tumor can be resected, some can't), radiation and Temodar.

The doctors you will deal with immediately after the diagnosis generally only know of the standard treatment.

They may know of a clinical trial if it is being done at their hospital, but other than that they typically know very little about what is going on in the clinical trial area.

The reason is quite simply really, there is no shortage of cancer patients, and so doctors are literally swamped, second there are many hundreds of Clinical trials going on, consider that a doctor that specializes in cancer of the brain deals with many different cancers, but there are over 200 GBM trials currently recruiting patients and the actual results from ongoing trials are only published at key points in the trial, so most are essentially invisible to the normal medical community.

If you decide to go the clinical trial route realize that the clinical trial area is TOTALLY different than normal medical care.

If you enter a clinical trial, you are essentially a lab rat. The doctors don't try to establish much of a relationship with you (mental self preservation I suspect)

You can even enter a trial and actually be a control, meaning you don't know what treatment you are getting (you will always though get at least the Standard treatment)

Not that that's bad, when a clinical trial works you have happy lab rats.

BUT

You need to remember that almost all of them fail in one way or another as break through treatments are the rarity.

AND

If you opt for entering a clinical trial quite often you can't avail yourself of the standard treatment (or at least some aspects of it).

For instance, for many of the GBM trials you can have Surgery, maybe the radiation, but then you only get the Trial medicine, but not the Trial medicine AND Temodar (this will be spelled out in the documentation for the Clinical trial).

So it's a gamble.

In fact there is a good chance that you will fare worse in a clinical trial than patients undergoing the standard care.

But with the type of prognosis you get with GBM IV, isn't that much of a gamble in my opinion.

Arthur

bukh

15th January 2010 - 10:20 PM

QUOTE (adoucette+Jan 14 2010, 04:54 PM)

Your friend's mother is in China, so anything I post here might not apply.
It's important to understand how the system works where you are.

In the US, you get the STANDARD treatment for GBM unless you opt out of the standard treatment.

That is surgery (if the tumor can be resected, some can't), radiation and Temodar.

The doctors you will deal with immediately after the diagnosis generally only know of the standard treatment.

They may know of a clinical trial if it is being done at their hospital, but other than that they typically know very little about what is going on in the clinical trial area.

The reason is quite simply really, there is no shortage of cancer patients, and so doctors are literally swamped, second there are many hundreds of Clinical trials going on, consider that a doctor that specializes in cancer of the brain deals with many different cancers, but there are over 200 GBM trials currently recruiting patients and the actual results from ongoing trials are only published at key points in the trial, so most are essentially invisible to the normal medical community.

If you decide to go the clinical trial route realize that the clinical trial area is TOTALLY different than normal medical care.

If you enter a clinical trial, you are essentially a lab rat. The doctors don't try to establish much of a relationship with you (mental self preservation I suspect)

You can even enter a trial and actually be a control, meaning you don't know what treatment you are getting (you will always though get at least the Standard treatment)

Not that that's bad, when a clinical trial works you have happy lab rats.

BUT

You need to remember that almost all of them fail in one way or another as break through treatments are the rarity.

AND

If you opt for entering a clinical trial quite often you can't avail yourself of the standard treatment (or at least some aspects of it).

For instance, for many of the GBM trials you can have Surgery, maybe the radiation, but then you only get the Trial medicine, but not the Trial medicine AND Temodar (this will be spelled out in the documentation for the Clinical trial).

So it's a gamble.

In fact there is a good chance that you will fare worse in a clinical trial than patients undergoing the standard care.

But with the type of prognosis you get with GBM IV, isn't that much of a gamble in my opinion.

Arthur

There is always an alternative to so-called active treatment - namely conservative or palliative treatment.

No one can tell what is the best - but it is wise in severe cases to consider this option - which may offer the best quality of life and perhaps in many cases even the longest life (non-testable obviously).

The medical society is very keen to translate any survival rate as something being the effect of active treatment. The true benefit of active treatment will never be known.

adoucette

15th January 2010 - 10:37 PM

QUOTE (bukh+Jan 15 2010, 05:20 PM)

There is always an alternative to so-called active treatment - namely conservative or palliative treatment.

No one can tell what is the best - but it is wise in severe cases to consider this option - which may offer the best quality of life and perhaps in many cases even the longest life (non-testable obviously).

The medical society is very keen to translate any survival rate as something being the effect of active treatment. The true benefit of active treatment will never be known.

Absolutely.

The good thing (from what I experienced) is that for the Standard regimen of care the doctors have seen so many patients that they generally have a pretty good idea of the difference between doing that and pallaltive treatment and will tend to recommend what to them seems like is in the best interests of the patient.

In my experience they really are a pretty caring bunch of people you will tend to deal with. They know much better than you, what you are going to be going through, and do provide a lot of guidance.

In many cases, it's not an do this or do nothing choice, its often do this until it stops working and then do this until it stops working and then switch to pallative care.

In the specific GBM case, if you go with the Standard treatment, for most people there aren't serious negative side effects of the medicine you take (Temodar) and generally those are controlled by taking steroids to control brain swelling. The steroids cause you to want to eat everything in sight, but that also can be controlled.

Arthur

chamrao

17th January 2011 - 06:17 AM

QUOTE (lorraineh+Jan 13 2010, 05:26 AM)

Only May God bless her.
And buy a Pandora Bracelet @ www.jewelry-beads.net to bring her good luck may also help.
May God give her the power of recovery!

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