Newbies, down under

[Guyandsue]

I am new to this site also. We are from New Zealand My husband Guy was diagnosed with advancepc in May 2013. Gleeson 9 and psa 30. He has never really responded to hormone treatments, bicalutamide, and a couple of other similars, zolade. About a year in he had radiation treatment to prostate with limited response, rising psa, then failed self funded zytiga. Guy was offered but failed xtandi, has completed 1 round of 10 treatment of docetaxel, also failed. We are, in nz only offered further docetaxel treatment. We self funded a zometa type treatment before it became funded in nz and have until recently continued with these infusions, usually in conjunction with chemo. This is what we have done under our nz health system. We have done a host of other alternate treatments as well, detoxing just about everything, amalgam filling removal, live blood consultations, rife treatment, vitc infusions and supplementation, salvestrols, zinc, curcumin whilst doing the radiation treatment, metformin among others.

Guy now has a psa of 300 or so, we have actually stopped looking at these. After a recent ct scan ( Dec 2015) he had spot radiation treatment to potential spinal cord compressin site, and femur neck met sites. He had a radiation recall reaction to this. A second round of chemotherapy ( only docetaxel is funded in nz at this time) was offered and we commenced the first two treatments. 

At this stage and through the whole process, I have grilled our oncologists for new treatments and made suggestions of my own, often shot down. These are wonderful people, they are just constrained by a system and by a scientific process which I am not interested in at this point. 

One of the things I asked about was testosterone treatment, but got the usual, not proven, not going to go there response. Can anyone tell me more about this.

More recently we are just back fro 5 weeks of treatment in Italy where we had instruction on a ketogenic diet, combined with 3 bp ( a glucose blocker) mineral treatments, ph monitoring and treatment ( nebulise and transdermal), transdermal dsmo, hyperbaric O2 treatment. We are still to see the results of this treatment on Guys next scans. He was extremely tired on this treatment and did not seem to respond very well to the ketogenic diet. We are taking a break from this and will reassess in a few weeks. In the meantime we are welcoming our first grandchild into the world and spending time with our family.

Guy has generally been very well throughout all these treatments, but this last lot have sapped his energy...he is extremely positive and we will continue to pursue treatment, any help in alternates for us would be apprecated.

Kind regards

Sue

Reply

[Darryl Partner]

Perhaps the best medicine will be hugging and kissing your new grandchild...congratulations on that.  

[adlerman]

Your efforts are definitely praiseworthy. You have taken "be your own advocate " to

a new level. I had never heard of DSMO being used for PC. In the US they still sell it in hardware stores.  Oxygen therapy was reportedly used for breast cancer in the 70's 

but it didn't catch on. I wish there was a website where people who had successful treatments could list them. We only seem to hear of treatments that didn't work for others.

[Carol2]

Hi GuyandSue,

Grandchilren are just the best! Enjoy! We too are in NZ and at times have found the journey harrowing. The right doctors are the main thing, things have changed here in the Waikato and Ray is now getting what I consider the best treatment, having "named patient programme" for Xtandi.  I wish Guy luck with his chemo.

Carol