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.
Agreed to Herceptin
Appointment with UK Onc. Great news, YES, I can have Herceptin on the NHS. I was so happy. Apparently there is a small pre-clinical trial being run in Manchester which is similar to the Chemo Sensitivity test. It is not in widespread use in this country but the German tests have been recognised and therefore their conclusions have been accepted.
I gave them a copy of the bone scan carried out in Germany and asked them if they knew about the cancer in my hip and neck. The UK Onc said that my February bone scan did show a small amount of uptake in the Pelvis and slight possible wear and tear in the neck (degenerative changes). It was more apparent in the July scan that there was an increased uptake in the left Pelvis.
Had an ECG to check my heart as Herceptin can cause heart problems. UK Onc has also suggested a CT scan and a Kidney Function Test.
A Close Shave
11 year old Jonathan Hines kindly volunteered to have all his hair shaved off and wear one of my old wigs for a week (during half term). I visited the Barbarshop in Caversham to watch Jonathan lose his locks and then have a photo taken by the Reading Evening Post. Jonathan has had sponsorship of approximately £500. What a brave lad. Thanks also go to Emma Ruan, Manageress of the Barbarshop.
Returned to the consultant for a bone scan to see the distribution of the Samarium. Again got to see the results within 20 minutes of the scan and was able to take a copy of the scan away with me. The results were a little disappointing for me. Although the Consultant said that from his point of view it was a good picture. It showed where the Samarium had been taken up in the bones (ie in the larger tumour areas). One of the areas I was not expecting to see anything was in my hip! This may account for the problems I’ve had in my leg for the last year! The funny thing is though, I was told that when I had my MRI scan in February, the problems with my leg were unrelated to the cancer and that it was sheer coincidence that it was found. Doesn’t look that way now!!
The German Oncologist has said I need to start the Herceptin now, so they are going to give me some to take home. It appears to be half the price in Germany compared to the UK!! (Euros 700 for 150mg) I will need 300 mg for first dose which has to be administered at the Berks and then 150 mg for each following dose up to 8 weeks. For the first dose, it will need to be given over a 2 hour period and then I will need to be monitored to check for any reaction. The other doses can then be given over an hour without any further monitoring.
I have been told to come back out in the middle of January to have blood tests and another scan to check the status of my tumours. The blood tests will be the chemo sensitivity tests to see if I am still testing positive to Herceptin. Dr Jacob says this can change again.
Flew out to Germany with Steve for the Samarium treatment. This was administered as an injection. I then had a chat with the Consultant who advised that I drink at least 2 extra litres of water over the next 48 hour period to flush out as much of the radio active substance as possible. Steve went a little over board with the water and nearly drowned me in it!!
Keeping the UK Onc informed
I feel it is necessary to keep the my UK Onc completely informed of all proposals made by the Germany Oncologist. The UK Onc reiterated that there is nothing that will stop the spread of cancer completely but something to slow it down.
I mentioned that Dr Jacob had suggested that I start a course of chemo called Xeloda and the UK Onc said that this was one of the chemo’s that I would be offered here also.
We discussed the possibility of me getting Herceptin in the UK, as I said previously the problem is that my tumour was HER2 negative and therefore would indicate that I would not benefit from Herceptin. I gave her photocopies of the German Chemo Sensitivity test results which concluded that I had receptors in my blood for Herceptin. She said that she would get her team to check through them and let me know at my next visit on 28th October whether they could use these results to secure me treatment with Herceptin.
Reading to Portsmouth Bike Ride
Sponsored Men’s bike ride – Reading to Portsmouth. 35 very eager men left Reading at 8am this morning to ride 67 miles to the Victory Ship in Portsmouth. We couldn’t have asked for the weather to be any better. 8 hours later, 35 exhausted, but proud men made it to the Victory. I know it was quite a hard slog but I am very very grateful, especially to Darren for suggesting it and for jointly organising it with Steve. My thanks also go to Reading East MP Rob Wilson for help in starting the proceedings.
Possibility of full remission!
Meeting with Dr Jacob. She thought the scan results were actually better than she had expected whilst Julie and I thought they were worse. She went through the results of the chemo sensitivity test and said that the Arimidex on it’s own was too weak to stop the spread of cancer especially as there is lymph node inclusions. There was found to be receptors in my blood for Herceptin, which suggested I would benefit from this drug. Unfortunately in the UK, they only test your original tumour, in my case removed 4 years ago and found to be HER2 negative. Dr Jacob suggested I try and get the Herceptin in the UK as it is such an expensive drug to buy. Herceptin would be used to lower the risk of spread. It was also found that I had a high sensitivity to a chemo drug called Xeloda and should start on this as soon as possible in conjunction with Herceptin.
Following the results of the Natural Killer Cells test, it was found that they are only working at 28% therefore I have been advised to inject myself with Thymus and Lektinol to be used as supportive treatment.
The bone marrow results indicated that there is a little infiltration of the bone marrow by the cancer. This is disappointing and does mean that I am less able to tolerate any chemotherapies.
Dr Jacob then arranged for me to come back to the clinic on 19th October for a treatment with Samarium.
This was quite a lengthy consultation and my head was spinning by the end of it but I had just one more question to ask. What were they hoping to achieve with this treatment? Dr Jacob was very confident with her answer - Full Remission. Julie and I were absolutely amazed.
Results of PET scan
Flew out to Germany with Julie for my PET scan and further consultation with Dr Jacob following the results of the Chemo sensitivity testing and the bone marrow puncture.
Had to leave the Leonardis Klinik at 5am today for the PET scan in Stuttgart. It was a three hour drive and the appointment was for 8.30am. Had an injection which made me feel a little woozy and then had to lie down for an hour before the scan. The scan took about an hour and then within 15-20 mins I was in the Consultant’s office going through the scan results. Amazing really considering it takes weeks in the UK before you get any results and even then you’re not allowed to see them! Had a bit of disappointment as it was found that the cancer has spread to my lymph nodes in my chest which I was not aware of.
No funding for PET scan
Met with UK Onc to advise her of the proposed treatment by the German Oncologist. I asked why I had not been offered a PET scan in the UK and she said that the evidence is not strong enough to fund it in Secondary Breast Cancer and that was also the same for Samarium.
Reading to Hungerford Bike Ride
Sponsored Girls bike ride – Reading to Hungerford (17 miles). I think when the girls originally signed up to do this they thought this was going to be a hard slog and what would they do if it rained! But in actual fact they had a great laugh (especially when one of them fell in the canal).