wigs to wishes.org.uk

The “Dawn Hughes Wigs to Wishes Fund” has been set up to enable me to receive further treatment at an Oncology Clinic in Germany where they have had a high success rate in stopping the spread of Cancer in patients and giving them the best possible chance of remission. The Berkshire Cancer Centre have informed me that there is little chance of my Cancer going into remission with the treatment available in this country.

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.

Wednesday, November 30, 2005

Starting Xeloda!

Clinic appointment – I was all fired up to insist that the Oncologist start me on Xeloda and was ready with the information that Dr D had given me last week. So when I was finally called in for the appointment (as usual about 90 minutes later than the appointment time), I was disappointed to be told I wasn’t seeing Dr Adams but his Registrar which meant that I was being fobbed off this week, so I insisted on seeing Dr Adams and had to wait another 10 mins.

Of course it was a little different when actually faced with the Oncologist and he was throwing argument after argument at me. The Onc said that they don’t routinely use G-CSF (Neupogen or Granocyte, which are a haematopoietic growth factor that works by encouraging the bone marrow to produce more white blood cells). He also argued that when a G-CSF is given with chemo, it could cause the chemo to attack the white blood cells more vigorously and therefore deplete them altogether and leave me open to infection, from which I could die! He was adamant that it is not safe to give the chemo until the white blood cell count is seen to be rising. He has spoken with many consultants who consider it too dangerous to give a chemo after samarium when the white blood count is not showing signs of rising. Well, I couldn’t really argue with that, what do I know? (Interestingly, I have just spotted a trial on the cancerhelp.org.uk website, that is being run in Reading, which is running a test using G-CSF to try to prevent reduced blood cell counts after chemotherapy for breast cancer!)

I then went on to ask about Tumour Markers CA15-3 (specific to breast cancer) and why they are not routinely used. I suggested that maybe I should have had this test done on a regular basis when I was in remission between 2002 and 2005, especially as I had not had any bone scans during that period. As usual the same argument was used, that being, it is not good to be given unnecessary radioactive scans on a regular basis. The Onc went on to say that there is no good evidence to say that if the tumour marker goes up or down that it would indicate that something is on the move. The tumour marker number can go up and down for a variety of reasons.

Finally the Onc then suggests that I can begin the Chemo and gives me a prescription chart to take to the Pharmacy (I even have to pay a prescription charge for it!). He has also suggested that I change the weekly Herceptin to three weekly in line with the chemo regime and says that there isn’t any evidence to suggest that 3 weekly Herceptin is any different to weekly. So finally, after spending 2 hours in clinic I then have to wait another hour at the Pharmacy. I’m feeling like I have gone 10 rounds in a boxing ring. It’s as if it is a battle all the time with the Onc. I don’t think they like the fact that I am challenging what they know. I can’t disregard what I am being told in Germany and they don’t seem to appreciate that this is an uncomfortable place for me to be at the moment and I need to take any opportunity that comes my way.

After a further hour and a half spent in the chemo ward receiving the Herceptin, I’m finally allowed to go home. The anti-histamine infusion given before the Herceptin has really taken effect and I feel really dead on my feet, I need a couple of hours in bed to get over it. I’m beginning to dread Wednesday’s and I may as well right it off completely!!

Had a phone call from the Oncologist this evening saying that he was going to send me a blood form for a Tumour Marker test! I didn’t ask any questions. (Got results 28/12/05 - CA15-3 = 12, which is within the normal range)

Friday, November 25, 2005

24 hour Darts Marathon

Popped down the Polish Club this afternoon with some Danish pastries. They were all still hard at it. Returned again at 7.30pm ready to throw the last dart. I think everyone was extremely exhausted but didn’t they do well. I would like to thank Mick Lane for organising the whole event. Mick thinks that they will have raised approximately £1000 including the funds from the tombola and the donation by Zenick. Fantastic.

Must start on Xeloda

Dr Draczynski called me back this morning and said that Dr Jacob is adamant that I start the Xeloda as soon as possible. If my WBC falls below 2.0, I should be given Granocyte/Neupogen to start stimulation of the white cells and if my Haemoglobin levels drop below 11.0 I could start with Erythropoietin, therefore it should not be a problem for me to start with the Xeloda. Dr D also mentioned that if there was a lesion on my liver, then I would need to add another chemo drug to the treatment regime, Mitoxantrone. I’m still waiting for an appointment for the liver ultrasound.

24 hour Darts marathon at the Polish Club started this evening. Did a tombola which was a great success and raised £138.50. Many thanks to Zenick, Chairman of the Polish Club for hosting the darts marathon and also for donating £100 to the Wigs to Wishes fund.

Thursday, November 24, 2005

Updating the Leonardis Klinik

Felt okay today and managed to go to work.

Spoke with Dr Draczynski at the Leonardis Klinik. I wanted to update him on recent events. He was disappointed that I had not started on the Xeloda. I explained that they were holding off because my white blood count had been low. He said that they could give me Granocyte or Neupogen to stimulate the white cells. (As usual nothing has been offered to me to support my immune system during the treatments.) He said that it was important to start this chemo regime in conjunction with the Herceptin. When I mentioned that there might be something on the liver, he asked if they had checked my tumour markers. Unfortunately they don’t seem to do this at the RBH. He said that if there is a lesion on the liver, I would possibly need to add to the chemo regime already suggested. As he is not an Oncologist (but very knowledgeable all the same), he is going to speak with Dr Jacob tomorrow and call me back to discuss the situation.

Wednesday, November 23, 2005

Always Tired

Third Herceptin. I’ve just realised why I’m always feeling so tired directly after the treatment. They give me a large dose of Piriton (10mg) to stop any allergic reaction from the Herceptin. The only side affect from this is that I’m extremely tired. Had to go to bed at 8pm tonight.

Tuesday, November 22, 2005

CT Scan results not so good

UK Onc had the results from the CT scan (unusually quick for the RBH). Unfortunately they have seen something on my liver and some fluid in my Uterus area. They don’t know what either of them are so I am now awaiting an appointment for an ultrasound for both areas. The Onc is unable to commit and say what either of these are. During my liver ultrasound in February the Consultant said that he saw what was possibly a nodule on the liver. He thought that it may not be anything and that if it was, it was small enough to be dealt with by the chemo. Hopefully, that is what it is this time!

Chemo has still been postponed for another week or two. I think I need to speak with the German Oncologist to check that this is okay.

Monday, November 21, 2005

CT Scan

What a weird experience that was! First the barium meal drink and then the injection before the scan, which made me go hot all over. Not sure when I will get the results.

Wednesday, November 16, 2005

2nd Herceptin

Blood count still low, therefore still postponing chemo. Kidney function test results were okay.

Had to wait around for 2 hours after my clinic appointment before I got my infusion. As I was so tired I had a sleep on the bed on the chemo ward. Even though I had a sleep in the afternoon, I still felt quite tired after tea so went to bed for another hour!

BBC Monitoring Quiz night – Proceeds donated to Wigs to Wishes fund. The evening was a great success. Wendy ran the tombola throughout the evening. We had a great laugh even if our team came 12th out of 16.

Monday, November 14, 2005

Sick Again

Unbelievable. I was sick again today. Spoke with GP who has prescribed longer acting anti sickness tablets. Decided not to ring the Oncologist as I didn’t want them to postpone the Herceptin.

Saturday, November 12, 2005


Liisa Parkinson approached me a couple of weeks ago and said that her daughter, Rosie, would like to do something to raise money for my Wigs to Wishes fund. I thought this was a kind suggestion from a 9 year old. She loves swimming so decided that she would swim 40 lengths and proceeded to collect sponsorship. Thanks Rosie for making such a great effort, not so sure I could do 20 let alone 40!

Friday, November 11, 2005

Kidney Function Test

Turned out to be a long day today. Had an injection for the Kidney function test at 11am and then had to return at 1pm, 2pm and 3pm for blood tests. During the long wait I went to the Cancer clinic to have a word with the Oncologist. I wanted to reassure them that I was okay after being so ill on Wednesday. They were concerned that I was so sick and were considering postponing the next Herceptin. I think I managed to convince them that I was now fully recovered.

Wednesday, November 09, 2005

Vomiting most of the day

Got out of bed this morning and felt really dizzy and had blurred vision. Then I started vomiting for the next 6 hours. It seemed to happen every time I got out of bed. Anyway, rang the Cancer clinic and GP to get some advice, as I felt so ill. They both recommended anti sickness tablets of which I had a cupboard full. The Cancer clinic were a little concerned that I was so ill as it is not a normal side effect of Herceptin. The sickness subsided by 3pm.

As I was so ill today I had to cancel the Kidney function test and reschedule it for Friday.

Tuesday, November 08, 2005

1st Herceptin

Didn’t feel too bad directly after the infusion, just very tired. First infusion is twice the amount. Also had an antihistamine before the Herceptin to ensure I don’t have any allergic reaction. Went home to bed for a couple of hours but soon developed chills and aching bones all over my body. Headaches also. These are all known side effects of the Herceptin. Felt better around 10pm.

Friday, November 04, 2005

Unlikely to use my Herceptin

The UK Onc says that they are not sure if they can use the Herceptin that I have brought back from Germany due to Regional Protocol. There are strict guidelines about use of drugs – the pedigree of which they need to agree. Also the Herceptin is not made up at the RBH and would have to be sent away.

I will be receiving the Herceptin indefinitely unless the cancer spreads further – ie, Herceptin is not working.

The Herceptin will be administered weekly but could change to 4 weekly depending on how busy the Chemotherapy unit is.

White blood count has dropped slightly from last week therefore still postponing Xeloda. When it is prescribed, it will be given as a 2 week on and 1 week off dose, not as Dr Jacob suggested, ie 2 weeks on and 2 weeks off.

WBC 3.26
Neutrafils 1.67