Brain Mets No Primary

I see most people here have love ones with GBM.  My wife. 48, had 6 brain tumors, two months ago all either resected or radiated with gamma and whole brain.  Unlike the other posts, she has no primary tumor, no lung cancer,  just the brain mets.  Our oncologist said to get things in order but gave no other information.  The neurologist said he performed the surgery only because she has strong family support and it would make her comfortable.  We didn't ask anymore questions then and probably won't get another chance until her appointment next month when she has a CTscan.  She is taking steriods and anti-seizure meds and seems to be fine, except for having no hair from a month of radiation.

 Is there a site to go specifically for brain mets or cancer of an unknown primary.  I have read a lot and none of it is too promising. But the information seems to include people of all ages, with mets to other parts of the body, so it is hard to guess what her prognosis is.   Do people die of brain mets or just from the recurrence of the primary?  If so, what is the real prognosis of people in her condition?

Any kind of disease in the brain is worrisome.  Not being able to determine a primary makes it a bit harder to treat effectively.  Have they considered doing a PET scan?  Or are all the tests inconclusive?  Gamma knife is a good treatment for brain mets when they are small enough.  But if the primary is not found or is undetected it would be reasonable to believe that it would continue to metastasize.

Lorre,

Thank you for your answer.  I forgot to add that they did an extensive seach for the primary.  She had a brain MRI, PetScan, a bone scan, a tracheloscopy, colonoscopy.  The checked her lungs, ovaries, her kidney, her adrenal gland and her liver and everything came up negative.

So if I understand the chances are the original cancer will be the cause of any further recurrence and probably not the brain tumors?

Thank you, Paul

Very possibily, but if that is the only site that shows any activity it certainly makes the most sense to concentrate on the brain mets. 

Should you decide to look outside the box a bit, you might take a look at oleander based medicines.  Two are currently in FDA trials and one, named Anvirzel, has already passed phase I toxicity trials and is available via FDA exception rule from the Salud Integral Clinic in Honduras

http://www.saludintegral.hn

Oleander in various forms, including the patented medicine being tested as well as an herbal supplement from South Africa named Sutherlandia OPC has had impressive results against a wide range of cancers, including brain cancers and it crosses the blood-brain barrier.

You can find a number of articles as well as a list of peer reviewed studies on oleander at:

http://www.tbyil.com/articles.htm

There is also a health group devoted to oleander medicines at Yahoo:

http://health.groups.yahoo.com/group/oleandersoup/

As chance would have it, I received this wonderful email from my own auntie yesterday, which made my day and gladdened my heart:

"Your Uncle Edward wanted to tell you he got a good report on his last physical exam at the VA  Hospital in Bonham and for all practical purposes the lung cancer is gone.  He wants to give you credit for helping him beat the cancer.

The established medical profession can call oleander extract snake oil if they wish, but they are as full of sh*t as a Christmas goose, it works.  The tragedy is that more people do not know about it."

Pardon her "french" if you will, but I guess once you are past 80 you can be afforded some extra privileges - lol.

I should have probably added that oleander can be used as a stand alone cancer treatment or as a CAM along with chemo or radiation - and it is being increasingly used by oncologists to complement their main prescribed course of treatment.

When it is used as a CAM it potentiates both chemo and radiation and it has been demonstrated to eliminate or greatly lessen all known side effects of chemo including hair loss (with the sole exception thus far that it does not eliminate hair loss when the chemo drug of choice is Cisplatin).

Perhaps one of the major reasons oleander is so effective was discovered in European studies in 1986-87 when it was found to have six times the immune stimulating activity of the most powerful patented immune stimulators at that time.

I realize that oleander in raw form is highly toxic - but not so when processed into the medicine and supplement form (which is itself now made by a pharmaceutical manufacturing company to exact standards) and the FDA phase I trials found no doseage limit for toxicity, but rather stopped because the dose reached a size that was impractical to exceed.

As a point of interest, the very lates oleander medicine that has entered phase I FDA testing at MD Anderson clinic has no name yet, but is known simply as PBI-05204 (the PBI stands for Phoenix Biotechnology Inc)

I hope you find this information useful and wish you the very best.

 

On 7/16/2008 OVluvsher wrote:

I see most people here have love ones with GBM.  My wife. 48, had 6 brain tumors, two months ago all either resected or radiated with gamma and whole brain.  Unlike the other posts, she has no primary tumor, no lung cancer,  just the brain mets.  Our oncologist said to get things in order but gave no other information.  The neurologist said he performed the surgery only because she has strong family support and it would make her comfortable.  We didn't ask anymore questions then and probably won't get another chance until her appointment next month when she has a CTscan.  She is taking steriods and anti-seizure meds and seems to be fine, except for having no hair from a month of radiation.

 Is there a site to go specifically for brain mets or cancer of an unknown primary.  I have read a lot and none of it is too promising. But the information seems to include people of all ages, with mets to other parts of the body, so it is hard to guess what her prognosis is.   Do people die of brain mets or just from the recurrence of the primary?  If so, what is the real prognosis of people in her condition?

 

My husband was dx last yr. Had crainotomy,radiation and po tamador at present. My understanding is the gbm is the primary tumor. They say they can reduce the tumor and sometimes it is gone but his doctors told him it would come back and it did but states tamador is shrinking it some. He is able to walk,talk ,do all his personal care he just has confusion at times. He is now on decreasing dose of steroid,tamador,and celebrex. He has his 5 mri in aug and where praying for a miracle. This is an awful disease they say life span with gbm his is a grade 4 is 15 to 18 months but i pray it is longer. This it the hardest thing our family have faced. They say if tumor is larger they may start avastin and cpt11 in aug. His doctors did not recommend the cyber knife either. So we will just have to pray. Let me know about your wife. This is the first time i am responded to another person facing this horrible tumor. My email is

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 if you have any questions or just want to talk.                                          Janie

Janie, my 37 yr. old husband has GBM also.  The tumor is in his cerrebellum and has the same side effects, eg, memory, and balance is off.  He was diagnosed in Sept. 2005 and also has a shunt for the fluid to drain so there is no pressure on his brain.  His neurologist gave prognosis of 15 months, maybe 5 years.  Well, I am happy to say it will be 3 years soon.

His treatment was the Temodar, every 28 days for 5 days at 400 mg.  However it stopped working in March and started the Avastin, Comptasar combo.  The tumor has progressed 2 x since Decembeer of 2007. His next MRI will tell us more, hopefully it has stopped growing and started to shrink.  I pray for the best for us.

Keep Faith, I tell my husband that he is going to be here for a long time.

Take care and God Bless/

Celia

Janie,

Thank you for your kind words and concern.  This is predominately a GBM site so you will receive a whole lot of support and current information from others with experiences similar to yours.  I sincerely hope for the very best for you and your husband.

It seems with GBM and most other cancers, there is a sense that you and the doctors are at least doing something to fight the disease.  With my wife, there is no chemo, no more radiation for now-just sit and wait between scans with fingers crossed. Knowing that it is there lurking but not showing its face can be stressful, too.  Oh well, as I have learned from another program, one day at a time.

Michael

 

I believe that people with brain tumours have had success with the CAAT diet which I have been onmyself  to keep my heriditary colon cancer in check and have managed to shrink lesions without any chemotherapy or radiation.

 Their link is:  http://www.apjohncancerinstitute.org/index.htm

 I have written about the treatment on this site. Please feel free to email with any questions.