Forum Replies Created
When you say new trials do you mean by external hospitals/ doctors? Could we get particular doctors on board and do our own trials? Eventually have our own facilities? (Although I am sure that would be way in the future!)
Welcome! I’m George’s sister. I know exactly how you feel about your life story. When I tell people about my family they just gape at me with open mouths, not knowing what to say. You really couldn’t make this stuff up.
My brother had his first cancer as a two year old baby and I remember spending so much time with him in hospital as he recovered from his treatments too. I can only imagine what it must be like for you as a mother having to go through this.
But please take heart that on this site you will find many who feel as you do and have experienced very similar things. We will all support you.
Hi Sandra May,
Welcome to the forum. My name is Despina and I’m Georgie’s sister. He also had Rhabdo when he was two years old. He went on to have Chemo and Radiotherapy. Did your son have radiotherapy as well?
I know exactly where you are coming from when it comes to speaking with ‘people in the know,’ we found the same thing over the years. I’m glad that you have found this site now and I’m sure you will find great support on here.
Please keep in touch and let us know if anything else develops.
:side: Hi Welcome to the forum.
I hope you find this very helpful and comforting, we have a few members in a very similar situation as you.
Please let us know how your surgery goes.
I think its good, clear and got all the basic information but there’s nothing on there from a doctor. I think if people take it to their doctors they might not take it seriously because its not verified. Is there a way to get one of the doctors you are in contact with to put a quote on it or something? Just to show that it is backed up by people in medicine and its serious.
I am so sorry to hear that so many in your family have been diagnosed with LFS. I am also sorry to hear that you yourself are suffering with cancer. How are you and your family coping?
It’s really good you have joined our forum, hopefully we can provide you with information and support.
Welcome to the group. Thankyou for sharing your experiences, please do update us on any decisions you make.
We wish you all the best.
Hi, my name is Despina (another member of the Pantziarka family), I am George’s sister. Welcome to our forum. It is so nice to see that this site is getting round to different people now. I hope that in time it will be a place where people feel comfortable to come and talk about what they are experiencing and gain comfort from others as well as new information!
Thankyou for posting, I hope others will join you shortly!