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, October 24, 2007

UK Oncologist says "it is highly likely to be a spread to the liver"!

Following my visit to Germany last week I had an Oncology clinic appointment in Reading today.

I explained to my UK Onc how things went last week in Germany and the test results regarding the liver ultrasound. She said that the chances are it is something on the liver given the type of cancer I have. She feels that presently we need to keep an eye on it and agrees that I should have another liver ultrasound in 4-6 weeks at which time we can compare the size of the suspected liver metastases with the scan carried out in Germany last week. She has also agreed to carry out tumour marker tests following the raised levels for my CA15-3.

I also mentioned that the German Onc suggested it would be good if I could get Avastin. Unfortunately this is not funded by the NHS although it is being used in the private sector. My Onc said that there is not enough evidence in this country to suggest that Avastin is effective although she is aware that there are some Private Medical Insurance companies who are funding it for their patients. She did however agree to write to the PCT (Primary Care Trust) to ask if they would allow me to have funding for it. At least that is a positive step forward. Failing that route, I may contact my local MP, Rob Wilson to see if he can suggest any action.

I also mentioned that my Oestrogen levels were raised and it had been suggested by the German Onc that I change from Arimidex to Faslodex. Again she said that this is not funded by the NHS and she would write to the PCT.

It's all a waiting game. I did come away feeling really down today. Disappointed that my Onc feels that it may have spread to the liver and the fact that I can't get Avastin.

Friday, October 19, 2007

MRI Scan results

Great news, the brain scan went well, they did find my brain after all and it looks normal. That was a relief, so on the way back to the clinic I felt much more relaxed and was thinking things are at last looking up.

Unfortunately when Dr Draczynski had a word with me this afternoon it appears that things aren't quite as rosy as I first thought. He has now had the opportunity to compare the results of the liver ultrasound to those of the last one in May and he said that the lesion (that I already knew about) on my liver has increased in size and believes it to be a suspected liver metastases (tumour). Also to add to this, when I arrived yesterday they took some blood for testing and the tumour marker results have comeback with a big rise in the breast cancer marker CA 15-3. Back in July the result for the CA15-3 was 17 (which has risen steadily from 12 over the last 18 months) but today's result is 41.8. This was a big shock and I am a little worried. What has made it rise so suddenly?

So now Dr D is slightly concerned about this all. The only way to rule out a tumour on the liver is to have a PET scan but the new Oncologist, Dr Kopic has decided against this for the time being. He has however suggested that I do try and get the Avastin monoclonal antibody at home (at a cost of 2,000 pounds every 3 weeks). He is going to investigate this with someone he knows in London who may be able to administer it as it is an infusion and I will not be able to have it at my local cancer centre and of course I can't fly out to Germany every 3 weeks for it.

As part of my ongoing treatment, Dr D has suggested a vaccine injection of which I would have 2-3 at a cost of 5,000-6,000 euros per shot!! This vaccine is made up using my blood to instigate my immune system against my tumours. It's official name is Dendritic Cell Therapy. http://www.dendritic.info/

So, the good news is that the bone scan has revealed a slightly regressive disease (ie improvement). It is possible that the lesion on my liver was a tumour but not active previously which is why it was not picked up as cancerous on any other PET scan but now with the evidence of the tumour markers it could be something. Dr D has assured me that there is plenty that can be done if it is found to be cancerous. Will be seeing Dr D and Dr Kopic tomorrow before I leave for the airport to discuss future actions.

It's like a roller coaster, I was on my way back from the MRI scan this morning thinking all was good and then had a big let down. I am still trying to remain positive as ever but the biggest worry is how I am going to afford all this life saving treatment?

Thursday, October 18, 2007

Bone Scan

Had the bone scan in Weilheim but again staff have changed and I don't recognise anyone. The doctor I usually see has left (Dr Kock).

Had the scan and within 10 minutes got the results. There appears to be no change in progression and if anything there has been slight regression which is fantastic. Just have to wait for the MRI scan results on my brain tomorrow.

Went back to the clinic and had a number of infusions including hepa metz to flush out the liver and selenium.

Following lunch Dr Draczynski carried out a liver ultrasound. He said that he can see a lesion on the liver and would need to refer to the last ultrasound scan he did in May to compare. I did mention that I had a liver ultrasound at my local hospital in July and they saw the same lesion and said that it was seen on the last liver ultrasound 2 years ago and the only change is the size, otherwise they were not concerned.

The MRI is booked for 9.15am tomorrow.

Wednesday, October 17, 2007

Leonardis Klinik Visit

Flew to Munich to visit the Leonardis Klinik for scans to see how I have been doing since my last visit.

Arrived at the clinic during the afternoon. There are not many patients here this time and there has been quite a few staff changes.

I saw Dr Draczynski at approximately 8.30pm (these doctors do work late!). We had a chat about what has been happening since my last visit. I was able to tell him that I have been having quite severe headaches for the last 3-4 weeks and an occasional blurry left eye. He was a little concerned about this and said that we might need to arrange an MRI scan on the brain.

He took some blood for testing including tumour markers.

My bone scan is booked for 8.15 tomorrow.

Sunday, October 07, 2007

Newspaper article about Jane Tomlinson

I saw an interesting newspaper article about Jane Tomlinson today. It said that Jane's dying wish was for her husband to campaign to end the unjust system in which patients are denied access to life-saving treatments because of NHS red tape. Her husband Mike said that when Jane realised that she was dying, she begged him to sort out the failings in the health system that deny patients access to the best drugs. The article also went onto say that for the last three months of Jane's life, she was denied a new drug called Lapatinib (Tykerb) that could have extended her life.

Not surprisingly she is one of many women in this country who would like to have this drug, myself being one of them and the NHS simply won't stump up the money. In actual fact NICE haven't even passed it for use in this country yet, even though it is widely used in the US and Europe.

The article also went onto say how incensed Jane was about this issue and that she wanted to expose the inconsistencies and discrepanies that allow people to be denied drugs that could benefit them. At present access to drugs is heavily restricted until they are licensed in the UK (by NICE) and sometimes the restriction is due to hospital trusts refusing to pay for them.

Drugs should be made available to patients once they have been licensed in another approved country and the Government should make a list of approved countries.

I totally agree with this, surely it is a fundamental human right for people to get the best treatment available. The NHS is letting us down!!

Monday, October 01, 2007

More Haelen

The Leonardis Klinik have contacted me to say that they wish me to continue with the Haelen study and have arranged for another batch of bottles to be sent to me. I believe I shall be taking this at a reduced dose but not sure how much yet.