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.
Saw Dr Hahnewald today, she is one of Dr Barrett's registrars and funnily enough is German. She was very interested in my news of the liver remission and I gave her a copy of the treatment plan proposed by the Leonardis Klinik. She was agreeable to the Actos and Arcoxia and said that she would write to my GP giving her consent. I was really pleased.
Avastin is to be resumed in 3 weeks as I have to wait 5 weeks after the laser op before continuing with it.
The Leonardis also recommended I have a liver ultrasound so Dr Hahnewald will organise this for me.
The appointment today went really well. I picked up my next prescription of chemo tablets and had the pamidronate.
Good to be home
I've been getting lots of congratulations today but I am being quietly optimistic and positive because although the liver is now in remission, the cancer can so easily creep back in. Anyway it is good news and I'm sure that when I'm feeling so much stronger the positiveness will build and I'll hopefully get back to normal, including returning to work.
Rang my GP today about the Arcoxia and Actos. They're not keen to prescribe these two drugs for me without written consent from the Berks because they are off licence for what I would like them prescribed for. Arcoxia is an anti-inflammatory drug used for osteo-arthritis and Actos is used in diebetic patients who do not require insulin. Dr Kopic told me that there is evidence that these drugs used together can stop cancer cells from spreading by inhibiting the growth of new blood vessels. I'm at the Berks on Wednesday for my usual Oncology appointment so will have to ask them first before going back to Germany and buying it from them if necessary.
I have a reprieve for 6 months!
More infusions today which were finished by 2pm which is really quick for me. The line that was put in by my District Nurse on Monday worked a treat so I'll have to ensure that I try and do that each time.
All paperwork was completed today and Dr Kopic gave me my therapy recommendations for the following 6 months. Yep, I don't have to go back now until January when I'll be having my 5th Dendritic Cell Vaccine. Hopefully everything will be okay in between. After discussions with Prof Vogl, Dr Kopic has advised me to have an MRI scan in the UK in 3 months so I'll be requesting one in October. Anyway, the Berks should be doing some sort of restaging with scans and tests of their own.
The therapy recommendations include two new drugs, Arcoxia and Actos. Christine seems to think that I should be able to get these in the UK but will have to wait and see.
Liver is officially in remission .....
Well, for the time being anyway.
Started on my usual infusions this morning and then saw Dr Kopic (Oncologist) this afternoon. He did an ultrasound on the liver and confirmed that it is now in remission. I said I hope that we can keep it that way.
He wants to add another drug to my treatment plan which he hopes will help stop the cancer cells from spreading. I've been given a new tablet called Actos which is associated with treatment for diabetes.
I had a blood transfusion this afternoon as my Hb level was down to 7.8. It took ages to administer. I think it was because the blood was so thick. Afterwards I was really red.
Today's the day!
Had the laser to the liver this morning at 7am. The operation wasn't anywhere near as painful as last month. They did use sedation but Iwasn't asleep, I think they needed me to be awake to ask questions and check for pain etc. Maybe they also gave me more pain relief this time. The access site was different to before and was on the right side of my body over the liver.
My right shoulder was hurting once again after the operation and they said that it is connected to the liver operation.
Following the operation I stayed in the day unit until 6.30pm and then I went for the MRI scan. Half an hour later Professor Vogl came up to see me and said that the liver is now clear of any tumours and in fact there was only one that could be seen before the op and needed the laser treatment (maybe the chemo I'm on has dealt with one of the tumours). He was pleased and said that he hoped he wouldn't see me for quite some time but I didn't feel that he was confident that I wouldn't see him again which is what I'm hoping for. Prof Vogl also mentioned that there is some fluid in my lungs which needed to be kept an eye on.
Andy, the driver from the Leonardis Klinik then came to collect us for our trip back to the Leonardis. It was pouring with rain the whole journey but I managed to sleep again in his car and still go to sleep in my bed.
Tanya's day was very long because we arrived at the hospital in Frankfurt at 6.30am and we didn't leave until 7.30pm during which time she really had to keep herself occupied whilst I slept most of the time.
Flew out to Germany for 2nd Laser treatment
Flew out with Tanya to Frankfurt this evening for my second laser treatment tomorrow on the liver. Had the line put in my port this morning so hopefully the infusions will work faster and maybe I'll be sedated more and pain free! Last time I went I allowed the hospital in Frankfurt to put the line in which wasn't very successful.
Energy levels picked up, Hb dropped again!!
Got the results from my blood glucose test which were within normal range so no problem with the sugar levels there. Had the results from my full blood count taken earliar this week and the Hb level has dropped to 8.9. Funnily enough though, starting yesterday, I've been feeling much better with more energy. Just as well really ahead of next weeks op. I'm really quite nervous and anxious. I really don't want it to hurt so much again and then take nearly 4 weeks to get over it.
Evening Post write up for Prince Fun Day
The Reading Evening Post did a fantastic write up for the Prince of Wales Fun Day which included a lovely picture of Helen Donahue, Kate Wilson and myself. I've tried finding the article on the internet but it's not listed. Shame.
Really bad week/glucose intolerance test
I haven't felt at all well this week. I've been so tired and lethargic, I just can't believe it. I've struggled to do anything without getting over tired after 10 mins. It's a horrible feeling to be this tired.
Had a glucose intolerance test at the GP surgery today because Dr Kopic at the Leonardis Klinik thought that my blood sugar levels have been high for a number of months and this could be a reason for the tiredness and weight loss. I spent two hours at the surgery while I had a blood test before drinking Lucozade and then had to wait for the second blood test to see how my body dealt with the glucose. Won't get the results until sometime next week.
I also had another full blood count test as my Hb was at 9.0 on Wednesday.
I was hoping for the blood test results this evening but they didn't come through.