Saturday, 11 February 2012

11 Feb 12

Hello Everyone,

Home life seems to be getting busier and busier and I am finding it harder to post on a regular basis and to find a convenient time to do so.  Supatra is doing pretty good although she has had a few bad days where her energy level was just not like previous ones.  However, for the most part we have been able to continue increasing her doses and she is very near her target dose.  Since I last posted we have had several oncologist appointments, her monthly physical exam with her private doctor that is required by the ANP protocol and an MRI scan.  Her MRI scan was a very mixed blessing and did not live up to our hope that the tumour would continue shrinking.  However, it was not that bad considering we had to take Supatra off antineoplaston treatment several times in November and then after the last time we intentionally increased her dosages at a very slow pace as we were worried of another relapse that would result in her coming off treatment again.  Supatra has been on treatment without interruption (except for a few dosages here and there) since 24 November 2011.  Had we increased her dosages as we had been taught in Houston she would have reached her target dose by the 18th December; however, we chose to go slower because of the problems she was having in November and we have yet to reach the target dose although we have been near the top for several weeks. 

Why am I telling you all this?  Because we strongly think that the small (0.2cm) increase in one dimension of her tumour could very well be related to the fact that she was off ANP completely for several periods in November and because she was at a lower dosage for a significant period of time over the two month period from her last MRI on 14 Nov 11.  On the positive side the report stated that there was less 'enhancement' of the tumour which indicates a possible decrease in tumour blood activity (a contrast drug is used to enhance the blood veins in the brain and considering tumours develop their own blood vessels to feed their growth they then "light" up in the images from the MRI).  This can indicate a less active tumour - good news!  The following is a copy of the written report given to us:

'MRI Head: T1, T2, FLAIR and DWI of the brain with post contrast medium images.
There has been minimal increase in size in the left pontine mass when compared to 14/11/11 (2.5 x 2 cm now compared with 2.3 x 2 cm before).  Enhancement following gadolinium has decreased slightly.  Increased intensity on T2 weighted imaging in the basal ganglia and thalami has not changed (probably a treatment effect). No new Lesions'.

At the clinic we were also told that the treatment can go several ways depending on the patient and other factors (like treatment interruptions).  A patient can show tumour reduction right away (i.e. after the first scan, like Supatra) followed by slight tumour growth and then further reductions.  Or no response after initial MRI (i.e. first 6-8 weeks of treatment) followed by small tumour reductions thereafter. Or, continuous responses to the treatment and the scans will show progressive tumour reductions over the course of the treatment.  There's probably other combinations of this but those are the three they mentioned to us.  We are also following approx. 12 other patients on this treatment through their own blogs, diaries, and websites, and several of them have shown a similar pattern to what we hope will be Supatra's path and that is initial indications of tumour reductions, followed by some tumour activity or no reductions, and then followed by further reductions.  Therefore we are still hopeful that Supatra's tumour will breakdown while near or at her target dose over a period of significant time (weeks if not months).  Her next MRI scan will be a very nerve racking time for us and is scheduled for sometime at the end of March 2012; so please keep up your prayers and hope for the best!  We are also still waiting to hear from the Burzynski clinic to see what their radiologist says about the scans - whether he concurs with the NHS report or if they differ on their interpretations. The NHS report was rather short and sweet so I am keen to see if the clinic can add some more clarity for us.

I have also noticed that some of those other patients that I am following are posting their MRI reports and I think this is a good idea, as not everyone will believe positive results and will want proof.  Therefore, in the near future I will create a section on here where I will post copies of all Supatra's MRI reports and images (if possible) since starting the treatment.

Supatra continues to attend school on occasion and Punny tries to take her at least 2-3 times per week but this last week she was only able to go once.  On 3 Feb 12, we found out that Punny's car needed a new head gasket and timing belt and it took almost a week to complete the work.  Then on the weekend (4 Feb) I spun out in my old used car and damaged it to the point where it was not worthwhile to fix and had to buy another old used car in a hurry (no one or thing injured in the accident other then my pride and the car's front end!!).  So it was an expensive past week for us and rather boring for the family as they had no means of getting around while I was at work.  We have two cars on the road again so next week will hopefully be better for Punny and Supatra; although, now I have to worry about whether or not my new old used car will be as reliable as the wrecked one - fingers crossed.

This Friday was also Jason's third birthday and although he does not quite know what the fuss is about he had a good time on Friday and today we spent the day at Funky Fun House with a few of his friends.  I think Punny would like to post more on this including pictures tomorrow so I will leave it at that.

Please don't forget to visit our "news" and "Upcoming Events" pages to read the latest on what has happened and is about to happen on the fundraising front.

Best wishes,

1 comment:

  1. She looks great!!
    We just created Olivia's facebook yesterday. Her profile pic is the one she is eating an ice cream.
    Her MRI is on this Friday. We will keep you guys posted.

    Love Momoko