Just An Oldtimer Checking In

I haven't posted here in so long, I'm sure most of you don't know me.  I used to post regularly several years ago.  My husband was diagnosed in January of 2005 with GBM.  He had surgery, radiation, and 15 months of temodar.  His MRI's had been clear, so he made the decision to discontinue treatment as he was sick of feeling 'sick' all the time.  We went for 18 months after that with no regrowth and then the tumor came back. They put him back on Temodar (which he took begrudgingly), but after one month the tumor was continuing to grow but had slowed down.  He then added Ruta 6 and Cal Phos to the regimen.  The following MRI revealed  that the tumor was gone.  As sort of a blessing in disguise, he developed double pneumonia and was taken off chemo because he was so weak.  We continued on the Ruta 6 and Cal Phos and now 8 months later, the tumor is still gone.  We would have never been brave enough to go off chemo and try the homeopathic alone, so the pneumonia was actually a blessing.  So here my wonderful husband is, going on four years with this beast.  It has definitely been a roller coaster ride as you all know.  But for someone given a six month diagnosis, we are grateful every day.  His doctors can't comment on the Ruta and Cal Phos since it isn't FDA approved, but they just give us the silent nod and tell us to carry on.  I like to post his story in here to give all of you hope......there are long term survivors out there.  So keep fighting and never give up!!

 Fondly,

Patty

 

On 7/25/2008 Marmie wrote:

I haven't posted here in so long, I'm sure most of you don't know me.  I used to post regularly several years ago.  My husband was diagnosed in January of 2005 with GBM.  He had surgery, radiation, and 15 months of temodar.  His MRI's had been clear, so he made the decision to discontinue treatment as he was sick of feeling 'sick' all the time.  We went for 18 months after that with no regrowth and then the tumor came back. They put him back on Temodar (which he took begrudgingly), but after one month the tumor was continuing to grow but had slowed down.  He then added Ruta 6 and Cal Phos to the regimen.  The following MRI revealed  that the tumor was gone.  As sort of a blessing in disguise, he developed double pneumonia and was taken off chemo because he was so weak.  We continued on the Ruta 6 and Cal Phos and now 8 months later, the tumor is still gone.  We would have never been brave enough to go off chemo and try the homeopathic alone, so the pneumonia was actually a blessing.  So here my wonderful husband is, going on four years with this beast.  It has definitely been a roller coaster ride as you all know.  But for someone given a six month diagnosis, we are grateful every day.  His doctors can't comment on the Ruta and Cal Phos since it isn't FDA approved, but they just give us the silent nod and tell us to carry on.  I like to post his story in here to give all of you hope......there are long term survivors out there.  So keep fighting and never give up!!

 Fondly,

Patty

 

 

Hi Patty,  great news about your husband.  Great job hanging on to the rollercoaster.  Where did you get the Ruta 6? I have read about it and looked on line but so far have not found a supply. I am intersted in trying it.

Sincerest regards,

 

Conrad

Patty, what is Ruta 6 and Cal Phos?  Where do you get it?

My husband was diagnosed 4/07 with inoperable GBM IV.   He did radiation and temodar which did nothing.  In fact the tumor progressed.

He was immediately put on Avastin and CPT-11 and got one full year of good MRI's before it started to grow again. 

He's now in a clinical trial.  After only 4 days on the new drugs, his platelets have gone down by half.

So, I would really appreciate any info on these two products.  I'm assuming that they are supplements?

Thanks very much,

Barb

My husband is a 4 1/2 year survivor of GBM.  He has also takes ruta 6.  We purchased it from www.homeopathyworks.com.  If you call them you can just ask for the Dr. Banerji protocol.  There is also a group on Yahoogroups that discuss this protocol.  Its so inexpensive and without side effects its a no brainer to try it.

Thanks for sharing this, I am glad your having some success with this form of therapy. Good luck to you and your husbands continued health.

 

On 7/25/2008 Marmie wrote:

I haven't posted here in so long, I'm sure most of you don't know me.  I used to post regularly several years ago.  My husband was diagnosed in January of 2005 with GBM.  He had surgery, radiation, and 15 months of temodar.  His MRI's had been clear, so he made the decision to discontinue treatment as he was sick of feeling 'sick' all the time.  We went for 18 months after that with no regrowth and then the tumor came back. They put him back on Temodar (which he took begrudgingly), but after one month the tumor was continuing to grow but had slowed down.  He then added Ruta 6 and Cal Phos to the regimen.  The following MRI revealed  that the tumor was gone.  As sort of a blessing in disguise, he developed double pneumonia and was taken off chemo because he was so weak.  We continued on the Ruta 6 and Cal Phos and now 8 months later, the tumor is still gone.  We would have never been brave enough to go off chemo and try the homeopathic alone, so the pneumonia was actually a blessing.  So here my wonderful husband is, going on four years with this beast.  It has definitely been a roller coaster ride as you all know.  But for someone given a six month diagnosis, we are grateful every day.  His doctors can't comment on the Ruta and Cal Phos since it isn't FDA approved, but they just give us the silent nod and tell us to carry on.  I like to post his story in here to give all of you hope......there are long term survivors out there.  So keep fighting and never give up!!

 Fondly,

Patty

Patty,

I am so pleased to hear of the success your husband is having.  It certainly gives all of us hope.  My brother, Mark was diagnosed last December and operated on, chemo/radiation/temodar/CPT-11/Avastin and he too is doing remarkably well.  His last MRI at Duke just this past Monday was 100% clear as all have been so far.  We too, are very hopeful and Mark will probably continue on this path beyond the study date since he has had success with this study.  I understand that all treatments will not work on everyone, but your story gives us that much more hope that if we need advice in the future, this path is something that we will entertain if need be.  Thank you for sharing your story and I will pray for your husband and you.  Please keep Mark in your prayers for us.

God Bless,

Jackie

 

Warrior Jack who was operated on 51 months ago and "given" six months continues to fight the daily battle for good health.  Jack tries to maintain a positive attitude, partner with his docs and now is in a retirement mode after working after the surgery.  The importance of  maintaining a good balance of positive to buffer the negative aspects is key as is humor and a serene home situation.  Jack has suffered nerve damage from treatment and continues to try for the balance with meds.  Did I mention that Jack took temador for THREE YEARS so he now deals with the after effects and fall-out from the treatment,  but does feel gratitude for STRONG meds and good docs.  Hope this good news provides encouragement for others who are suffering from a GBM IV because statistics are numbers and people with hope, a strong will and a good support system can oftentimes beat the odds.  Rock on.

As someone else also stated, you can order Ruta and Cal Phos from www.homeopathyworks.com or you can call at 1-800-336-1695 and ask for Dr. Banerji's brain tumor protocol.  There is also a good article from MD Anderson in Houston regarding this at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&a It takes the FDA forever to approve treatments, frankly I think they are in cahoots with the drug companies.  You can also read about Dr. Banerji's studies at www.pbhrfindia.org  One thing to remember when taking these meds is to not touch them with your fingers.  We put into the cap and my husband dumps them under his tongue.  Anyway, we are convinced that this is what has kept my husband around for so long.  Good luck to you.

 Fondly,

Patty