Wednesday 9 November 2011

9 Nov 11

Hello everyone.  Supatra is continuing along with her treatment regimen but is not doing that good due to the treatment.  She is now the same as she was the last week in Houston, very lethargic, non-engaging, and weak.  Over the last few days she has stopped eating and only nibbles from time to time.  It has been a week since we took her off the steroids and I think the lack of appetite is a combination of coming off the steroids and the copious amounts of water she needs to drink with her treatment.  The doctors have not yet suggested lowering the dose although me and Punny think that is what needs to happen.  The last two blood works show her potassium dropping (making her more lethargic and overall sleepy) and her uric acid (indicates tumour breakdown, which can result in increased pressure within the brain) and sodium (which can elevate pressure within her brain) levels increasing.  The high uric acid is good news because it means the tumour is reacting to the treatment although she must now take a drug to help lower it.  The high sodium although not at max is a problem and we will have to watch this closely and ensure we strictly monitor her sodium intake through food.  We will also have to increased her potassium supplement to get that balanced as well which will hopefully result in her being less tired.  We really do not want her to go back on steroids as I think it is causing more problems (loss of body fat and atrophy of the muscles) then it solves over the long haul.  Unfortunately Supatra also caught a cold from her little brother Jason as well. Poor thing!

I have added some additional links of stories from the children we have met while at the Burzynski clinic and who are all still undergoing the antineoplaston treatment like Supatra.  Please look under the links section on the left.  Olivia and her family are from Maui and Olivia is doing much better then when we last saw her - well done Olivia!  Billie and her family are from Exeter and she seems to be doing very well as well.  We wish her and the family all the best.  Luna and family is from the London area and is also having a hard time on the treatment. Last is Joseph and his family who are from Louisiana and I know he is doing very well as he is the boy whose tumour shrunk by 95% after only a month on the treatment.  Wish all you guys and gals the best in your journey down this terrible cancer road.

I also want to wish everyone good luck to those attending tomorrow nights pub quiz night at the Milton White Horse raising money on Supatra's behalf.

Best wishes to all,

Jorg

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