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.
I emailed Dr Jacob seeking advice on the information that the UK Onc gave me yesterday. I would like to know what she thinks I should do regarding the Bondronat tablets.
I've been looking up some information on Bondronat on the internet. Taking them orally looks like a pain in the backside:
Bondronat tablets should be taken in the morning after an overnight fast (at least six hours). The tablet should be swallowed whole with a glass of plain water (180 to 240ml, not mineral water) while you are sitting or standing in an upright position. Do not chew or suck the tablet. You should not lie down for one hour after taking your Bondronat tablet. You should not eat or drink anything other than plain water for at least 30 minutes after taking the tablet. This is because food and some drinks (including mineral water) can interfere with the absorption of the medicine from the gut and hence make it less effective.
You should not take any other medicine by mouth in the six hours before you take your Bondronat tablet, at the same time as your Bondronat tablet, or in the hour after you have taken the tablet.
Considering the amount of other tablets I have to take in the morning this could turn out to be a nightmare. I'll have to get up at 6am just to fit it in!!
My UK Oncologist has said that she will be stopping my Pamidronate infusion very soon and instead will prescribe Bondronat tablets. I have asked if I could change to Zometa but she says that there is no funding in my Cancer Centre for this infusion. She says that there is the risk of jaw necrosis when you have been taking Pamidronate for a long time and feels that as I have been taking it for nearly two years, it is now time to stop.
I need to contact the Leonardis Klinik to find out what their thoughts are on this.
Navelbine and Pamidronate infusions went well. Bloods were good today and in fact the white blood count is the best it has been for quite a few months.
Clinic appointment then treatment. Appartently my notes have been missing for the last 3 weeks, they thought they knew where they were and didn't realise that I would be needing to see the Oncologist today so hadn't bothered finding them. Great!! Well, seeing as I was having chemo, you usually have to see the Onc so that they can agree to having treatment that day. Not really off to a good start and then it didn't get much better when I saw the Onc. I said that I wanted to discuss my scan results because I found them a little confusing. She hadn't even seen the MRI and X-ray reports so said I knew more than her!! I showed her the copies (lucky that I took them) and she said that the X-Ray obviously wasn't able to penetrate deep enough to see the tumour. She also confirmed that there was no evidence of fractures.
I then went on to ask whether I could change my Biphosphonate infusion (Pamidronate) to another one called Zometa which I had been told was more superior than Pamidronate. She said no straight away as it was not funded in Reading. I said that I knew someone who was receiving it in Reading and had been recommended it after she went for a second opinion at the Royal Marsden Hospital in London and then got it straight away in Reading. She said that she would find out if I could have it but was not very confident of the outcome. I said obviously if I don't ask I'm not going to get.
I also mentioned that I had a bad reaction to the anti-sickness drug last time. She said it was quite alright not to have it and also not the steriods so I was very pleased.
Went off up to West Ward for treatment which went fine.
Line inserted in arm
Had my line put in this morning in preparation for treatment on Wednesday. It went like a dream. I put some Ametop Gel on an hour before the District Nurse arrived. This numbs the area so when she inserted the rather large needle, I didn't feel a thing unlike my last experience at the hospital. I'm just preying that this doesn't clog up by Wednesday and we have to start all over again!!
Went to my GP this morning for a blood test as the Leonardis wanted to make sure that this was kept an eye on during the first few weeks of chemo. Whilst I was there I asked my GP if she was able to access the MRI scan and X-Ray results, which she was. The X-Ray report read as follows: "Bones are reasonably well mineralized. Note the findings on PET scan. There is early osteoarthritic change in both hips. They can see no convincing evidence of secondary deposit". Both the GP and I found this confusing as obviously the PET scan results showed a large tumour in the left hip. I shall have to wait to speak with Dr Barrett next week.
The MRI scan read: "Small, relatively discrete areas of abnormal signal are seen in the bodies of L2, T8, T6, T5 and T2 which would be consistent with metastases. There is also a probable deposit in the body of C2 extending into the odontoid".
Overall, there doesn't appear to be any fractures which was the reason for having the scans. I shall be forwarding a copy to the Leonardis Klinik.