GBM IV - alternative therapies

jemaston77

I'm on here looking for a little direction........December 1st, my 78 yr old (and very healthy) grandma was diagnosed with GMB IV.  Because of the location of the tumor, left frontal lobe, they were unable to remove any of the tumor.  She has decided against radiation/chemo, and our family supports her decision.  She was on decadron for less than 3 weeks, and after 5 days without any steriod, she began to deteriorate rather quickly.  She started taking turmeric supplements a few days before the steriods were stopped, and we (as a family) have been juicing and eating heathly.  Because she was not doing so well without the steriods, her oncologist started her back on a low dose of decadron.  

Has anyone else on here ventured down the alternative therapy pathway?  I have read about other success stories, but have yet to find any success stories (regardless of treatment type) of someone my grandmothers age.

Any information, stories, support, etc, would be so appreciated.  I live with and care for my grandmother now, I am in my last semester of nursing school, and have felt that the medical world has brushed their hands clean of my grandmother since she refused traditional treatment.  My heart is heavy and breaks every moment that I watch the strong, stubborn, beautiful, and  independent woman lose her autonomy/independence.

Thanks from the Midwest, 

Jess

jemaston77

where did the responses go?

I really appreciated the response, but unfortunately I didn't get a chance to responsd......and not your comment is gone.  Thank you for your information and even though you are half way around the world, it was comforting to know that there are others out there refusing chemo/radiation and are finding success with alternative therapies......especially those over the age of 70.

Thank you again

Jess

jcwinnie

CAM for GBM Stage IV

Sounds like you are doing the right thing. Curcumin longa a.k.a. tumeric is the most specific complimentary / alternative

I am 63 and diagnosed with GBM (Stage IV) November 5, 2011. I take 4 800mg capsules each day as I understand that little of the active ingredient is absorbed across the brain / blood barrier. 

Other CAM that I take and hope that I helps with GBM is Vitamin D3 and Melatonin.

 

Sincerely,

Jonathan Smith

jemaston77

jcwinnie said:

CAM for GBM Stage IV

Sounds like you are doing the right thing. Curcumin longa a.k.a. tumeric is the most specific complimentary / alternative

I am 63 and diagnosed with GBM (Stage IV) November 5, 2011. I take 4 800mg capsules each day as I understand that little of the active ingredient is absorbed across the brain / blood barrier. 

Other CAM that I take and hope that I helps with GBM is Vitamin D3 and Melatonin.

 

Sincerely,

Jonathan Smith

Thanks Jonathan!  If you

Thanks Jonathan!  If you don't mind me asking..........has it stopped growth or decreased the size?  She's been taking 1200 mg capsules daily for two weeks now and will be completely off the steroids in another week.

Congratulations on moving past the year marker!  Keep up the fight!!

Jess

jalu

My Mother is like your Grandmother in many ways.

She is dying of stage IV brain cancer.  An 86 year old, vibrant woman whose health history is pristine (the only time she has been in the hospital was for childbirth!).  A cute, 93 pound, "little old lady" and we love her.  We've chosen NOT to do chemo or whole brain radiation either.

One thing that I believe has helped her greatly is that her doctor has her on pre-natal women's vitamins.  These are strong vitamins to generate health and vitality in pregnant women!?!  But I DO believe they HAVE given her "energy" and "vitality" over time (not to the level of a young pregnant woman, I am sure, but we will take whatever we can get).    

In many ways, my Mother is like your Grandmother.  Elderly!  Having chosen NOT to go with the last resort treatments which WILL cause suffering.  My Mother has had a great life, but she is not ready to DIE.  So sad.  

Keep me posted on your Grandmother.  I'll put her in my prayers.  I'll let you know as things progress with Mother as well.  

It is so hard -- WE have to be strong for them.  Hang in there... 

jemaston77

jalu said:

My Mother is like your Grandmother in many ways.

She is dying of stage IV brain cancer.  An 86 year old, vibrant woman whose health history is pristine (the only time she has been in the hospital was for childbirth!).  A cute, 93 pound, "little old lady" and we love her.  We've chosen NOT to do chemo or whole brain radiation either.

One thing that I believe has helped her greatly is that her doctor has her on pre-natal women's vitamins.  These are strong vitamins to generate health and vitality in pregnant women!?!  But I DO believe they HAVE given her "energy" and "vitality" over time (not to the level of a young pregnant woman, I am sure, but we will take whatever we can get).    

In many ways, my Mother is like your Grandmother.  Elderly!  Having chosen NOT to go with the last resort treatments which WILL cause suffering.  My Mother has had a great life, but she is not ready to DIE.  So sad.  

Keep me posted on your Grandmother.  I'll put her in my prayers.  I'll let you know as things progress with Mother as well.  

It is so hard -- WE have to be strong for them.  Hang in there... 

Thank you for your

Thank you for your prayers.......and I will keep you and your family in mine.  You are right, there ARE very much alike.  My grandmother has only only been in the hospital for childbirth too, and up until this point she has always been a very strong, independent woman who still has sooo much more to do.  Pre-natal vitamins, hmmmmm.  I am going to look into that, that you for that bit of information.  

We have begun to reduce her decadron dosage again, she's been on Turmeric, raw foods and other organic supplements, so we are hoping that it's helping and we won't see a change once she is completely off the steroids.  HOPE---it's all we have.

Big hugs for you and your mother!!!!

jcwinnie

jemaston77 said:

Thanks Jonathan!  If you

Thanks Jonathan!  If you don't mind me asking..........has it stopped growth or decreased the size?  She's been taking 1200 mg capsules daily for two weeks now and will be completely off the steroids in another week.

Congratulations on moving past the year marker!  Keep up the fight!!

Jess

I was doing well until last MRI

Thanks for your inquiry.

The last MRI was "suspicious" and the neurosurgeon wanted me back on Temodar, so I had the 5 day high dose oral treatment in December and January and will again have 5 days 300mg per day for the month of February.

So my point is that I moved past 1 year with the full course of treatment -- surgery, radiation and chemotherapy. Between August and December 2012 I was only on CAM. This was after 3 consecutive MRIs 3 months apart that showed as "clean / clear".

One possible conclusion could be that it came back when I went off the chemotherapy. I do not necessarily agree with that, yet I did agree with my neurosurgeon to go back on the Temodar. And, now the oncologist is talking about my going on Avastin which is delivered by IV. Elsewhere there is experimentation with genetic manipulation. Anyway, there is need for more medical research.

Since I am continuing with allopathic care at this time I am cautious about which CAM I take. Curcumin / tumeric is relatively safe. Unfortunately, little gets past the blood / brain barrier. If she is taking 1200mg a day, I hope that it is the B-95 microground Curcumin, for which supposedly more gets past.