Thanks for taking the time to visit my website. I'd like to tell you a little bit about myself. I'm a wife and mother of 3 young children, Matthew 13, Ellie 10 and Freddie 6. I was first diagnosed with Breast Cancer in 2001 at the age of 36. Following Chemotherapy and Radiotherapy, I was in remission until a chance MRI scan in Feb 2005 for an unrelated problem, detected that the Cancer had returned. I was then diagnosed with Secondary Breast Cancer. The likely prognosis given in February was 18 months to 5 years. I then had to undergo aggressive Chemotherapy, but following the results of a recent bone scan, it was found that the Cancer is still spreading.
The treatment in Germany will cost thousands of pounds and for most people like myself, the opportunity for this is a dream. Many of my Family and Friends want to make this dream a reality and are making tremendous fund raising efforts, because without them, I would not be able to seek the treatment that I so obviously need and which is not being offered in this country.
Clinic appointment - Pain in liver area!
Clinic appointment at the Berks. Saw my Oncologist for the first time in months. I explained that I have been having a pain in my right side and in my back possibly where the liver is! She said, as she has said in the past, the problem with having two different Oncologists trying to manage my treatment across a continent is going to cause problems. She said she does not have access to scans that are carried out in Germany, yet I know that I have given her copies of scans in the past but have got the impression that they haven't done anything with them. If she wants copies then she should make it clear that they are interested in what is happening when I go to Germany but they don't ask and I have to volunteer the information which I was trying to do at my last appointment when I was practically chucked out of the consulting room for taking up too much time asking questions!
She asked why I had the chemo 5FU in Germany which I said was because the last PET scan showed bone marrow infiltration. Again she said that she did not understand why they gave me the 5FU and I said that I didn't know anymore and did as they thought I should! She said that she would organise a liver ultrasound as this was not a radio active scan she was happy to do this.
Haelan drink
Now on day 27 of the Haelan drink. The first bottle didn't go down too well as it tastes disgusting but subsequent bottles have been better especially as I mix it with Soya milk and put an articificial sweetner in called Stevia which was recommended by the Leonardis Klinik. I also take it through a straw so that my tastes buds don't get a direct hit from the disgusting taste.
I had to get some blood sent over to Germany for testing following at least 14 days of taking the Haelan drink. This proved to be quite tricky as the Leonardis Klinik had recommended TNT or DHL, but neither would take the blood. Someone else suggested FED-EX which were more co-operative at a cost of £45.
The District Nurse came this morning to put my line in for treatment on Wednesday and also withdraw the blood to be sent to Germany. Nothing ever runs smoothly when you want it to and the port in my arm was playing up. We had trouble getting any blood out. I'd taken a day's holiday from work to try and get this sorted. Anyway, 3 attempts later we got a needle into the port that worked and the blood was withdrawn. The FED-EX guy picked up the package mid-day and I can only hope that it reached its destination in one piece.
UK Oncologist Appointment
Went for my normal cancer clinic appointment today at the Royal Berks and saw my Onc's Registrar. I wanted to ask about the Thalidomide drug and to update them on my last visit to Germany and the treatment that I received. To be honest they weren't really interested and appeared to be too busy to talk to me! I asked whether I would be able to get Thalidomide and the Registrar was quick to tell me that it wasn't available on the NHS and therefore I couldn't have it. When I tried to explain that I had looked it up on the internet and that I understood it was used to help with the unpleasant side effects of cancer he quickly shot me down and basically said that he didn't have enough time to speak with me about other treatments as I was attending the chemo clinic and they were really busy. Blimey! Sorry for trying to discuss my treatment options!!! I thought that my appointment with them was to be able to discuss my treatment, not just to check that my blood was okay for chemo and then send me on my way to West Ward. He back tracked a little by saying that they were happy for me to go to Germany and find out about any drugs and then come back to the UK to ask if they were available but if they are not on the NHS list then I can't have them.
I came away feeling quite upset as I'm only trying to find the best treatment options for me. This country is really failing its cancer patients and is not giving them the best options that are available because it can't afford it. Of course I only know this because I am getting advice from Germany.
It has been reported that Thalidomide may decrease the expression of various chemicals in the body that stimulate blood vessels. So it prevents the tumor from making new blood vessels. Without new blood vessels, the tumor can't sufficiently feed new cells, so the cancer can't grow.
Thalidomide may also act on many different levels in the immune system, and perhaps stimulates the body's immune system to help it fight cancer as well, thereby playing a role in its reduction of cancer cells also.
