Bone scan with Dr Kock in Weilheim. Had an appointment at 9am for an injection and then had to wait two hours before the scan. I had to drink plenty of water in the two hour wait to ensure that the injection was flushed through my body.
There was some good news following the bone scan, Dr Kock said that the periphery bone was not affected so much and this scan was very similar if not slightly better than the previous scan in October. He said that he would consider giving the Samarium treatment again but at a half dose due to the bone marrow infiltration.
We obviously came away from the scan results quite confused as to what this all meant. The PET scan suggested extensive spread in the bone marrow, but the bone scan suggested that all was not as bad as it seems.
Meeting with Dr Jacob: Dr Jacob does not consider this to be as bad as first thought following the PET scan results yesterday. The main thing that is worse is the bone marrow and this does need to be dealt with urgently. She has suggested a treatment plan which includes a 6 day visit to the Leonardis Klinik to receive continuous chemo (5FU) via a pump alongside hyperthermia treatment and also Samarium.
Current chemo regime (Navalbine) has to be discontinued. She did say that she felt that it had worked to a degree but not enough.
There are a number of drugs she wants me to get at home including Tykerb which has not been made available on the NHS yet (but is in trials up and down the country), so Dr Jacob has asked if I can get on a trial. (Very doubtful knowing the Royal Berks Hospital) If this is not possible then I should ask for Avastin which has been FDA approved throughout Europe including the UK but I'm not sure that it has been approved for use in Breast Cancer patients and I imagine that this will be the answer from the RBH. Dr Jacob says I need one or the other. If I can't get it in the UK and have to pay for the Tykerb, it will cost approximately £2,000 per month! Can't see my fund lasting very long if that is the case!
Dr Jacob then went onto say that I should try to get Haelan which is a fermented soya extract, she said that there have been many studies throughout Europe and the US which back this as a product that fights against oestrogen receptor cancer. Next on the list is Incense which can be taken as a fluid drink (also known as H15). She was not happy that I was taking Zopiclone for my sleeping problems and has therefore suggested Melatonin plus Gaba. (Another one to look up on the internet). Dr Jacob's knowledge is amazing. You do not get any advice or help like this in the UK!!
Finally I asked about the biphoshonate issue I have ie I don't want to take the tablet form of Bondronat because of the associated stomach problems it can cause and the fact that you have to take it an hour before any food and you have to be in an upright position during that hour (ie can't take it and then go back to bed). She said that Bondronat can be given in IV form (intraveneously) as well and if I cannot get that from the RBH (Bondronat tablets are not available on the NHS, so the IV version may not be either) then I should have Clodronate IV which is just as effective. This has put my mind at rest and has given me the ammunition to discuss with the RBH and tell them that I don't want the Bondronat tablets.
So, following this lengthy meeting with Dr Jacob I then had to have a bone marrow puncture in my right butt cheek. I had to lie on my front and was then given an IV sedative which only partially kicked in during the procedure. After the lumber puncture they turned me on my back and as I was still compus mentis I asked to see what they had taken. They showed me a vial of liquid with what I can only describe as a small piece of pink bone floating in it. Then I passed out!! Well not passed out really but the sedative kicked in well and good and I woke up an hour later sore and groggy. Still, it didn't stop me from having a lovely piece of cake in the restaurant!!
A lot to take in. Another visit to the Leonardis in possibly 2-3 weeks and a lot of money to spend if the NHS don't come up trumps!