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.

Thursday, May 31, 2007

BBC News interview

BBC Health correspondent rang me this morning asking if I would do an interview for them for the 1 O'Clock news and possibly the 6 O'Clock news. I was a little reluctant because I'm supposed to be at home off work resting following my treatments last week. Anyway, I was talked into helping out and they sent a camera crew up from London. Basically they wanted me to comment on the news that the NHS are paying for an anti smoking pill which will help smokers give up. Obviously I felt that this was wrong because people have a choice whether to smoke and damage their bodies. It is well documented that we have known since the 1950's that smoking damages your health and can cause lung cancer. I haven't done anything to cause my cancer and yet the NHS are withholding crucial drugs which could prolong my life because they can't afford them and yet they are paying for pills to stop people smoking. Whose to say that these smokers give the pills a go and then decide to smoke again. What a waste.

I know these anti smoking pills are very cheap compared to cancer treatment but if the NHS saved in other wasteful areas as well, it all adds up. Smokers have a choice to give up and save their health. I don't.

Documentary maker and author, Adam Wishart also visited me this afternoon to discuss his ideas for his documentary on cancer drugs in particular, he is looking at Tykerb. This could be a very interesting documentary for me because I want to try Tykerb. It could potentially prolong my life and isn't a chemotherapy drug.

Wednesday, May 30, 2007

Haelan 951

80 bottles of Haelan 951 arrived a couple of weeks ago just before I flew out to Germany so I had to wait until my return to start taking the drink. Today was the first day and it tastes absolutely vile. Can't imagine how I'm going to persevere with it. I need to ask for advice on how to mask the taste.

Saturday, May 26, 2007

Meeting with Oncologist

Having spent nearly a week at the Leonardis Klinik, I had an appointment with Dr Jacob early this morning before I left for the airport.

I'd been told earlier in the week that the bone marrow puncture that was carried out during my last visit had come back clear which contridicted the PET scan results. This is highly confusing and Dr Jacob said it was confusing but she thought that maybe there were pockets of tumours in the bone marrow which was not detected by the bone marrow puncture. She felt that we should go with the bone marrow results because this type of test was very rarely wrong. In fact she thought that it was good news that it had come back clear especially as my first bone marrow puncture in September 2005 had showed slight infiltration by the cancer. She has decided therefore that there will be no further chemo for at least the next 3 months as she doesn't want to compromise the bone marrow. She thinks I've had enough for now. She also made the point that the chemo doesn't seem to be getting rid of the tumours in the bones but it is still positive because it hasn't spread to the soft tissue areas like the liver or lungs. I didn't ask any further questions about this but I wonder if she is saying that it is highly unlikely to get me into remission and the best we can hope for is to contain the disease!

She has suggested that I revisit in 3 months for a bone scan and at that time we would consider Tykerb or Avastin and now a third drug called Thalidomide. She said that Thalidomide may be the next course of action because it is cheap and I should be able to get it back in the UK.

She was also very surprised that the UK are so slow at giving Tykerb as it has had excellent results throughout Europe.

Thursday, May 24, 2007


Had the Semarium treatment yesterday which was quite straight forward, just an injection and then I had a bone scan today to check that the Semarium had hit the target so to speak ie that it had settled in the bone tumours.

I'm starting to feel a little queasy and so not enjoying my food at the moment. Also my mouth and nose are sore which I think is a side effect of the 24 hour chemo I'm having at the moment but other than that I'm still doing okay.

Monday, May 21, 2007

Whole Body Hyperthermia

Had the whole body hyperthermia this morning. It was quite gruelling. I had to get into a very very hot bath for 15 mins to help raise my body temperature. Then I got into a tent with only my head outside of it and a fan to try and help me cope with the immense body temperature. Infrared lamps heated the tent and I was monitored by various methods, heart, blood pressure, oxygen in blood and of course temperature which was assessed using a rectal thermometer!!

After about 15 mins I was finding it unbearable and the doctor said that we had to wait until my body temperature reached at least 38.8 degrees. Luckily this happened soon after and then I was wrapped up to keep the temperature from dropping too quickly. The temperature went up further to 39.1 degrees before it started coming down. My heart rate must have been pumping the blood and chemo round my body at a very fast rate because my heart was beating like the clappers throughout the treatment. Following this I went and had a sleep for an hour, I was exhausted.

Come the evening I seemed to have recovered quite reasonably and even the Oncologist thought I looked good considering what I had been through earlier in the day!

Sunday, May 20, 2007

Starting Chemo at the Leonardis Klinik

Arrived at the Leonardis Klinik following a white knuckle taxi ride. The driver reached 200 km per hour at some points during the journey!

The weather here is baking hot and I attempted a walk this afternoon but it is quite hilly around the clinic and was soon defeated by the blistering hot sun.

Upon my return, I was met by Dr Draczynski who decided that he would run some tests and start the chemo this afternoon. They took some blood, did an ECG, did a liver ultrasound and then hooked me up to some infusions before starting the chemo.The whole body hyperthermia is tomorrow and by all accounts it is quite a gruelling treatment. Dr D says that they will take me back to my room after for a 2-3 hour rest!

Wednesday, May 16, 2007

Clinic Appointment to discuss Tykerb and Avastin

Had my usual 3 weekly clinic appointment at the Royal Berks today. Didn't see my usual Oncologist as she was unwell and didn't want to pass on any germs to her patients. Therefore I saw her Registrar, Dr Yeoh.

I gave him a copy of the treatment plan as supplied by Dr Jacob at the Leonardis Klinik. Dr Yeoh was happy with the recommendations but when I discussed the subject of being prescribed Tykerb or Avastin he said that this was not possible. He said that Avastin had only been passed for private prescription use and therefore the Government guidelines forbid use of Avastin within the NHS. He then went onto say that I would not be eligible to go on a Tykerb trial due to the fact that I am receiving different treatments elsewhere and I would not give a good indicator of whether the drug was working or a combination of the trial drug and other drugs I'm taking are having any effect. Basically he said, their hands are tied.

He went onto explain a little bit about how cancer cells work in that they can take many different routes/roads and one drug may stop one route of spread but the cancer may then find another route in which to spread. I am fairly aware of this but at the end of the day if you can stop it at every turn then maybe the prognosis is better because you will survive longer if you make it harder for the cancer to spread! Surely this should be the number one priority as there isn't a cure as yet!!

I then went on to say that I did not want to change from a biphosphonate infusion to a tablet due to the problems involved and he said at this stage they would continue with the pamidronate infusion and monitor it every 3 weeks.

Tuesday, May 15, 2007

Another documentary in the making

Following my interview yesterday on News 24 I have since found out today that it was also broadcast on Radio 2 and Radio 4. The Radio 4 broadcast was picked up by a documentary maker who has contacted me through the Wigs to Wishes website. He was interested in my comments and was hoping to meet up with me to discuss an idea he has for a documentary with the BBC. I have mentioned that I am already taking part in another documentary.

He is also an author and has sent me a copy of his book entitled "One in Three" which I shall attempt to read next week whilst in Germany.

Monday, May 14, 2007

Cancer Drug debate

There's been a lot in the press recently about access to cancer drugs on the NHS. I'm seeing my UK Onc on Wednesday to ask about two drugs that the German Onc suggests I should have (Tykerb and Avastin). Neither of them have been passed for use on the NHS. I'm becoming so frustrated by the NHS. There are drugs out there that can prolong my life, they have been proven to be successful in the US and Europe and yet the UK won't make them available because they are expensive. What kind of support is that from your own country? Even if I wanted to pay privately for a drug in this country you can't because you then have to pay for everything privately. You can't mix and match your treatment which is why I am so much better off going to Germany. You don't get the service you should from this country because they know they can't afford to tell you about a drug that would help you!

The BBC have been running a campaign this week to highlight more information about cancer and I sent in an email to comment on the fact that drugs were not being made available quickly enough to the NHS patients. My comments were picked up at the BBC and they contacted me and asked if I would take part in an interview on News 24 with a guy from NICE. In for a penny in for a pound!! The interview lasted approximately 5 minutes. I was then asked if it was okay to broadcast parts of the interview on Radio 5 Live which I agreed to. I didn't get to see or hear any of the interview so it was all a bit of a blur really.

Monday, May 07, 2007

Haelan 951

Have been doing a little bit of research regarding Haelan. Seems it's quite expensive to buy at £497 for 20 days supply but does have a lot of research to back it up. See above link.

Spoke with the Leonardis Klinik today and they have supplied the name of a distributor in Germany where I may be able to get it cheaper as I am a patient at the clinic.

I also need to contact Dr Kock regarding the Semarium treatment to make an appointment and then arrange my next visit to the Leonardis.

So much to organise!

Sunday, May 06, 2007

PET Scan and Tumour Markers

I wonder what would have happened at the RBH if I only had the bone scan to go by. They would have thought that the chemo Navelbine had done some good but would not be aware of the bone marrow infiltration. I get the impression from Dr Jacob that the bone marrow infiltration is very important and can lead to spread in other areas of my body ie liver, lungs! It's scary to think that a lot of other things are going on in your body that you are not aware of and even the Oncologists in Reading don't seem to be either. I expect to get fobbed off at how this is not important in the grand scheme of things. Once the cancer has spread you have to treat it as a whole (according to my UK Oncologist).

Another thought that I've had is regarding tumour markers. On Friday, I informed Dr Jacob of my tumour marker results which have been taken over the last 4 months via regular blood tests. I mentioned that the CA15-3 had been steadily rising at each test result. She suggested that this was an indication that the bone marrow was affected. RBH have not suggested for one minute that there was a problem with them rising at every 3 weekly blood test!

Friday, May 04, 2007

Bone Scan + Onc Consultation

Bone scan with Dr Kock in Weilheim. Had an appointment at 9am for an injection and then had to wait two hours before the scan. I had to drink plenty of water in the two hour wait to ensure that the injection was flushed through my body.

There was some good news following the bone scan, Dr Kock said that the periphery bone was not affected so much and this scan was very similar if not slightly better than the previous scan in October. He said that he would consider giving the Samarium treatment again but at a half dose due to the bone marrow infiltration.

We obviously came away from the scan results quite confused as to what this all meant. The PET scan suggested extensive spread in the bone marrow, but the bone scan suggested that all was not as bad as it seems.

Meeting with Dr Jacob: Dr Jacob does not consider this to be as bad as first thought following the PET scan results yesterday. The main thing that is worse is the bone marrow and this does need to be dealt with urgently. She has suggested a treatment plan which includes a 6 day visit to the Leonardis Klinik to receive continuous chemo (5FU) via a pump alongside hyperthermia treatment and also Samarium.

Current chemo regime (Navalbine) has to be discontinued. She did say that she felt that it had worked to a degree but not enough.

There are a number of drugs she wants me to get at home including Tykerb which has not been made available on the NHS yet (but is in trials up and down the country), so Dr Jacob has asked if I can get on a trial. (Very doubtful knowing the Royal Berks Hospital) If this is not possible then I should ask for Avastin which has been FDA approved throughout Europe including the UK but I'm not sure that it has been approved for use in Breast Cancer patients and I imagine that this will be the answer from the RBH. Dr Jacob says I need one or the other. If I can't get it in the UK and have to pay for the Tykerb, it will cost approximately £2,000 per month! Can't see my fund lasting very long if that is the case!

Dr Jacob then went onto say that I should try to get Haelan which is a fermented soya extract, she said that there have been many studies throughout Europe and the US which back this as a product that fights against oestrogen receptor cancer. Next on the list is Incense which can be taken as a fluid drink (also known as H15). She was not happy that I was taking Zopiclone for my sleeping problems and has therefore suggested Melatonin plus Gaba. (Another one to look up on the internet). Dr Jacob's knowledge is amazing. You do not get any advice or help like this in the UK!!

Finally I asked about the biphoshonate issue I have ie I don't want to take the tablet form of Bondronat because of the associated stomach problems it can cause and the fact that you have to take it an hour before any food and you have to be in an upright position during that hour (ie can't take it and then go back to bed). She said that Bondronat can be given in IV form (intraveneously) as well and if I cannot get that from the RBH (Bondronat tablets are not available on the NHS, so the IV version may not be either) then I should have Clodronate IV which is just as effective. This has put my mind at rest and has given me the ammunition to discuss with the RBH and tell them that I don't want the Bondronat tablets.

So, following this lengthy meeting with Dr Jacob I then had to have a bone marrow puncture in my right butt cheek. I had to lie on my front and was then given an IV sedative which only partially kicked in during the procedure. After the lumber puncture they turned me on my back and as I was still compus mentis I asked to see what they had taken. They showed me a vial of liquid with what I can only describe as a small piece of pink bone floating in it. Then I passed out!! Well not passed out really but the sedative kicked in well and good and I woke up an hour later sore and groggy. Still, it didn't stop me from having a lovely piece of cake in the restaurant!!

A lot to take in. Another visit to the Leonardis in possibly 2-3 weeks and a lot of money to spend if the NHS don't come up trumps!

Thursday, May 03, 2007

PET Scan in Germany

Drove 3 hours to Stuttgart this morning for the PET scan. I had 2 injections into my small veins, as usual they were playing up and I had to put my arm in a sink of hot water. (Unfortunately I can't use my port over here). Anyway after the first injection I had to lie down and wait 20 mins before they gave me the second injection which always gives me a severe stomach ache for 5 mins. The scan was then 1 hr 10 mins. For the last half an hour I was in absolute agony, my left arm and shoulder were giving me a lot of pain but I couldn't move. I was thinking that I was going to have to ask them to stop the scan at one point it was so painful but thankfully just about made it to the end.

Unfortunately the results were not good. The stability of the bone marrow has been affected but not so much the hard bone (the bone marrow is inside your bones). There has been more spread and this is not good news. The Dr was however surprised at how well I looked considering the results of the scan (story of my life). The Dr went on to say that when the cancer spreads from the breast it can change its form and become a different type in different parts of the body and therefore become resistant to many different treatments. He also said that I must ensure that I manage the pain otherwise it could make me depressed and constantly think about the tumours too much. Fortunately at this moment in time I am not in a lot of pain and certainly not depressed. P'd off yes!!!