Friday, 18 November 2011

A part of me is now winging its way to the USA

Well I signed the consent form yesterday to go ahead with the proposed clinical trial. I phoned today to make sure it had been received and can confirm that the process has begun. I have an appointment booked at Addenbrookes for Wed 30th to hear if I have the necessary gene. However this may be delayed if the results are not back from USA as it does take 2 to 3 weeks. If I do have the gene then they have also booked an appointment for me on Wed 7th Dec for some scans so that the process can start as quickly as possible. I would also need some other tests such as an ECG before I can begin taking the drugs. I would be taking 4 tablets in the morning and 4 at night and there are possible side effects of nausea, tiredness, rash, sensitivity to light, joint or muscle pain, possible alteration of the heart activity. There is also a 25 to 30 percent chance of developing squamous cell carcinoma of the skin but these can be removed. I will have checks once a month and the first one will be a physcal exam, bloods, CT, ECG. A head and neck examinaton every 3 months, head to toe dermatologist exam every 3 months, CT or MRI every 2 months initially, and an ECG for the first 3 months and then every 3 months.

The study so far has given an eighty percent chance of slowing the spread or even regression of the cancer. However it only seems to work for about ten months but hopefully with more research this can be increased.

If I do not have the gene then there are other proposed layers of treatment as the consultant called them but I will only go into that when and if I need to.

Feeling better day on day as there has been lots to deal with over the last month. Still not feeling completely healthy but it's not really surprising. Looking forward to a lovely weekend with my Mum, Dad and brother and the rest of my fantastic family.


  1. oh Twinkle
    this all sounds so very positive for you but also very tiring with all the treatment and scans etc.
    You will need to admit when you are tired and rest a lot, you will have my support and others 100%, you only have to shout and I can be there for you. Its going to be very hectic for you but the end results could be such a bonus that its well worth the push to keep going.
    Am there for you Twinkle every step of the way, you are so brave and indeed my special star
    love and hugs G xxxxx

  2. Hi there Aunty Lynn, hope the family had a gooood meal ... With dessert! Big squeeze to your Mom and Dad and Bazza. Spoke to Charms lastnight but not surprisingly she couldn't log onto your blog - she's worse than me! Anyhoo she will prob give you a call. We love you LOTS. Happy thoughts to you. X

  3. Thanks both of you, much love xx