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Hi everyone

I have recently been diagnosed with CML in Canberra ACT Australia. I started on GLIVEC today 600mg and have agreed to go on the TIDALL II trial.
I look forward to hearing how well you are all travelling on the drug. Di

Hi Diana,
welcome to this forum. I recently met Dr. Tim Hughes who is one of the expert CML clinicians working in Adelaide Australia.
I am sure Canberra ACT is on the loop of expert centres and is in close touch with Dr. Hughes.

Keep updating us on this forum... we have a few members who are based in Australia.... and if you need any advice at all please ask here.

Sandy

Hi Diana
Sorry to hear of your diagnosis but well done for finding this forum so swiftly. I live in Rockhampton, QLD and was diagnosed last Dec, beginning Glivec 400mg in mid Jan this year. This forum has provided me with heaps of info and I feel like I have a support group of people to ask when things become overwhelming. I'm sure you will find it a great help too. I have had almost every side effect listed to some degree but none have been really severe. I had dizziness the first 48-72 hrs and that was probably the worst, but it has subsided and not reappeared. My skin has become quite dry and can be itchy - so lots of sun protection cream needed. I do get a strange taste in my mouth at times which I figure is the Glivec. I also get stomach upsets more frequently (especially with foods that have milk products in). There are quite a few other things that I have noticed that come and go but in general I feel well and have kept working full time and trying to eat well and exercise regularly to stay as otherwise healthy as possible. Don't know whether it helps but....

All the best
Jeanette

Hi Diana

I am from Western Australia

This forum with Sandy and others has been very beneficial to one and all

The Australia Leuk. Foundation has an interactive bulletin board that you can join that is named talkbloodcancer www.talkbloodcancer.com and also they have counsellors and other support networks. 1800 500 088 Aust.

LF also this year started a telephone conference the 3rd thursday of the month.

Dr Tim Hughes is the next Guest Speaker and if you wish to join the TC contact the LF in Australia - you do not get the opportunity often to speak with one of the leading global CML specialists

Essential Reading from this forum that Sandy put together is very worthwhile so you can have an understanding of bloods etc and how they work as most of your blood work.

Do not forget to diarise any side effects from your treatment and also your condition so that you can discuss with medical team

Keep Well
Sue
(Swan Valley)

Hi Jeanette

Thanks for your good ideas, i have been quite well but quizzy, some vomiting but it seems to be associated with a milk protien drink we have in the morning. I am trying it again today just to see if I am right. As I am on 600mg daily I iwll have to see how things go. Cheers Di

Hi sue thanks for this great inforamtion. I have joined the CML Alliance this week so I will look into this. On the trial I have to keep a daily diary so that is under control I guess it is just getting used to asking the right questions when I get to the specialist. Many thanks Di

Hi Sandy thank you for this information I will look into finding out more about how I can tap in to more information. Sadly it is great to know you are all out there are willing to support us. Warm regards Diane

Hi Sandy
I found out today at the hospital that Dr Tim Hughes is the lead Doctor in the trial I have agreed to be on so it looks like I should be in good hands.

Warm regards to you Di