Hi Kevin I had two tumours removed last November (2006) one on either side of the bowel, both were cancerous.  I had 80% of my bowel removed as well as one ovary and my gall bladder. I finished chemo in June this year after 6 months of treatment, one dose (which went over 3 days)  every fortnight.  I had a few side affects which today I still get the tingling and numbness in my fingers and feet.  I found the chemo very draining, not at first but after the 3rd dose i lost a lot of weight as I had the runs which made me dehydrated, I couldnt have anything really cold to eat or drink as it gives you a bit of a shock and I was very tied.  I didnt lose my hair but it thinned out a bit. Close to the end of my treatment I found I had some clots in my lungs. I have been on clexane to thin my blood for 6 months.  I finish this week.  So my story sounds all gloom and doom but today when people see me they wouldnt think I had ever been sick.  They say I look years younger.  I hope my story helps a little bit. Kaza ... View more

Hi Oldman, Everyone that is hit with the "C" word has their own special journey. When doing the treatment you do feel very weak, but you do get through it even stronger. Good luck   Kaza ... View more

Hi Dunedigger You have been through a lot on your journey like many of us and you sound like you have the right frame of mind to beat this.  Being positive is the best way to go.  I hope you complete your chemo without many side affects and you finally get your organic vegie garden going.  If you are in the Sydney metro area I would certainly come and buy some. Stay strong Kaza ... View more

Good morning, I thank my Oncologist. He arranges and advises me what I should be doing.  When I see him for my 3 monthly check up he has my year planned out with testing.   Kaza ... View more

Hi Bev I have a check up every 3 months by my Oncologists.  I have blood tests done before I see him and this checks my cancer markers.  I also have an annual colonoscopy and mammogram.  I have had a bone density test and from the results from this I will be seeing a doctor to do with hormones.  This has been all advised by my Oncologist.  I hope this helps you.  How long has it been since your cancer? Keep in touch Kaza ... View more

You dont still have blood tests every 3 months? It has been a year for me since I finished my chemo.  I expect to still have test every 3 months for at least another year. Kaza ... View more

Hi Bev I think there are alot of people who have it but they dont know it and haven't had the testing as yet.  I have one brother and one sister who carry the gene but they have been lucky not to have had bowel cancer. Kaza ... View more

Hi Lisa I do have my fingers crossed for you.  I had an ovary removed with my surgery 2 years ago as the tumour was leaning against it.  I have had a complete hysterectomy as well as a preventative measure as HNPCC is connected to edometrium cancer (I hope I spelt it properly).  I had 6 months of chemo Oxaliplatin, Fluorouracil and Leaucovorin. It really knocked me around.  But 2 years down I am feeling really well.  I just had a check up and everything seems fine. I hope you get some good news.  Keep in touch. Kaza  ... View more

Hi Mihalo, It is very young for your children to have colonoscopies.  At that age they dont really understand.  Mine will have theirs at 25.  When were you diagnosed with bowel cancer and at what stage are you at?  I was the same as you, finding others with hnpcc on overseas forums.  As you can see that there are not many of us who know if they have it not. Good to talk to you. Kaza ... View more

Hi Mihalo How long ago were you diagnosed?  Mine was in October 2006. My kids are 20 and 23 now and they were a bit shocked to find out that they carry the gene as well.  They were worried about it at first, but they have seemed to have forgotten about it with their busy lives.  It must be hard for you with young children. Do you live in the Sydney Metro area?  There is a Bowel Cancer Support Group at the San hospital.  They are the only support group for Bowel Cancer in NSW and they are really good. I thought I would just mention it if you are interested. When I was on chemo I had a PE and since then I had a blood clot in my leg.  I have since been tested and I also carry the Factor V Leiden gene, so my genes are really bad. In my family I am the youngest of 5 and I was the one to find out about all these problems. I better go. Kaza ... View more