Clare experience with Cediranib
Posted: Wed Apr 29, 2009 8:51 pm
This is a repost done by me (Olga) about Clare experience with cediranib from the information that she shared with me in the e-mail correspondence. Clare was one of the first ASPS patients to start cediranib trial with Pf.Judson and her case is presented in his report (and her big lung met dramatic shrinkage is documented by the CT scan presented in the report) in UK along with Paul Meyers - thanks guys for keeping us posted, it is a very important information for us.
========Clare experience on a cediranib trial=====================================
1. The effect of a drug:
The big shrinkage that I had was with the initial strong dose within the first 6-8 weeks. It did do very well my big right tumour was almost ten cm and is now only four.
They soon began to realize that I could not tolerate the high dose and we gradually began to continue dropping. However, the tumours did continue to get smaller, including my smaller mets on my left lung.
My first off drug scan scan in last August 2008, having stopped the drug at the start of July 2008, has shown that the tumours were slightly smaller. 10 month later in April 2009 it is all still stable. So there has been no growth since I finished trial last summer. I'm also generally feeling much fitter in myself and am jogging better in terms of both breathing and muscle/bone recovery from treatment.
2. Side effects:
I started in Sept 07 on the high dose of 45mg if I remember correctly. On this I had several initial effects: initially diarrhoea, with weight loss,
then I began to get sores deep in my throat, more towards my neck. Also the skin on the soles of my feet and some on my hands began to burn and come
off. Only small patches, approx 4cm, but it was very painful to walk. This had the effect of me having to walk on the outside edges of my feet, which
in turn stressed my knee joints.
Because of throat problem which caused me quite a few sleepless nights, tears etc I had to change my diet, to lots of milk, cold custard until April
this year. So I began to pile on the weight, causing further stress to my joints
The drug slows ones metabolism via thyroid effect, I was diagnosed hypothyrodic the same year I was diagnosed with asps, when I was 29, so my
weight overall had increased 3 and half stone - not good for legs!
I went off drug as my legs were getting weak - knees, ankles etc I was able to walk but did have the odd collapse, though I was still able to
survive the school day.
I don't think I would be allow to resume the drug as it was part of a trial and I am beyond the period where you are allowed to restart.
Other people may well be different to me if they aren't hypothyrodic initially as I am. I met another asps patient with much smaller mets, less than cm. Hers have become smaller, but not so dramatic as mine, and she has had no growth like me. Like me, she also decided to give up the drug as she was getting very tired and it was affecting the quality of her life.
My legs have now recovered from the drug effects. I just did lots of walking and cycling in August, being careful not to run. By mid-September I was able
to jog again, bearing in mind I was heavier. I have managed to lose nearly 2 stone in weight and feel great, back to full of energy and most importantly
my breathing is clear, whereas before the drug the right tumour nearly 10cm was restricting my breathing. Though this year has been tough, tiring, and
rather wearing, it's all behind me now and I am greatly benefiting from it.
I managed to keep working throughout treatment, so it can't be that bad!
I personally feel it was worth it, but I had to give it up to appreciate the benefits.
========Clare experience on a cediranib trial=====================================
1. The effect of a drug:
The big shrinkage that I had was with the initial strong dose within the first 6-8 weeks. It did do very well my big right tumour was almost ten cm and is now only four.
They soon began to realize that I could not tolerate the high dose and we gradually began to continue dropping. However, the tumours did continue to get smaller, including my smaller mets on my left lung.
My first off drug scan scan in last August 2008, having stopped the drug at the start of July 2008, has shown that the tumours were slightly smaller. 10 month later in April 2009 it is all still stable. So there has been no growth since I finished trial last summer. I'm also generally feeling much fitter in myself and am jogging better in terms of both breathing and muscle/bone recovery from treatment.
2. Side effects:
I started in Sept 07 on the high dose of 45mg if I remember correctly. On this I had several initial effects: initially diarrhoea, with weight loss,
then I began to get sores deep in my throat, more towards my neck. Also the skin on the soles of my feet and some on my hands began to burn and come
off. Only small patches, approx 4cm, but it was very painful to walk. This had the effect of me having to walk on the outside edges of my feet, which
in turn stressed my knee joints.
Because of throat problem which caused me quite a few sleepless nights, tears etc I had to change my diet, to lots of milk, cold custard until April
this year. So I began to pile on the weight, causing further stress to my joints
The drug slows ones metabolism via thyroid effect, I was diagnosed hypothyrodic the same year I was diagnosed with asps, when I was 29, so my
weight overall had increased 3 and half stone - not good for legs!
I went off drug as my legs were getting weak - knees, ankles etc I was able to walk but did have the odd collapse, though I was still able to
survive the school day.
I don't think I would be allow to resume the drug as it was part of a trial and I am beyond the period where you are allowed to restart.
Other people may well be different to me if they aren't hypothyrodic initially as I am. I met another asps patient with much smaller mets, less than cm. Hers have become smaller, but not so dramatic as mine, and she has had no growth like me. Like me, she also decided to give up the drug as she was getting very tired and it was affecting the quality of her life.
My legs have now recovered from the drug effects. I just did lots of walking and cycling in August, being careful not to run. By mid-September I was able
to jog again, bearing in mind I was heavier. I have managed to lose nearly 2 stone in weight and feel great, back to full of energy and most importantly
my breathing is clear, whereas before the drug the right tumour nearly 10cm was restricting my breathing. Though this year has been tough, tiring, and
rather wearing, it's all behind me now and I am greatly benefiting from it.
I managed to keep working throughout treatment, so it can't be that bad!
I personally feel it was worth it, but I had to give it up to appreciate the benefits.
