Tallyho - an update ( part 1 is on ' a blog on blogs)
Ok so where was I ? oh yes about to see if I could go on to the MATTIS TRIAL. also known for anyone interested as QRK202 stratum 2 .
So last Monday the hospital phoned me and asked again would I be interested and indeed i was and so the next day i received the 30 page document telling me what this trial would involve. it would be a 7 month trial and the good news was that I would have a 1in 4 chance of getting the much wanted drug LUCENTIS which as i am a diabetic I am not entitled to have on the NHS as yet. The paper work was lengthy and I then last Thursday went to the hospital to meet with a doctor and 2 nurses armed with my 20 questions (literally).
when I arriveed they were waiting for me as eager as I to get started with the tests etc that would be involved. My questions were answered and i was all ready to have the tests done to see if I was eligable to go on the trial. the only thing perhaps stopping me was the fact that I have a slight heart murmmer and a strange electrical pathway in my heart which makes me look on a ECG as if I am having a heart attack ( I kid you not) so i took all the paper work to show that my werid ECG is infact normal for me. I had done lots of other research and looked up the criteria as best I could to see if I could be ruled out on anything else and I seemed to be a perfect candidate.
But then came the bombshell. The doctor then said ," mmm your glasses look like you have a pretty strong prescription for this trial you need to be -8 or less refraction on the study eye" . Well that was that, I knew my refraction was -11 and I showed her a copy my prescription which is also in my file. I then had a refraction test done just to check and sure enough it was -11. So my hope of getting LUCENTIS was gone. The dr then said would I like an injection of AVASTIN as I certainly needed one. I declined as I was just too upset and had driven to this appointment so I now have an appointment on Thursday for my 11 th injection of a drug which is yet to show any real signs of working.
Any how on a plus note - yesterday I went to London to be a volunteer patient for some students learning to be optomotrists I really enjoy this because it gives me something positive to do. Incidently it was through the MDS that I found out about doing this through their ' get involved' page, for me it was just what i needed - to feel useful again to someone - thanks MDS.
Your Tallyho
Drusen, dry AMD and AREDS2
Black 'blobs' in my eyesight!
New rationale for treatment
Hopefully no more injections 😃
