Regular features

Letter from the Chair

Well,the year draws to its end and, as I write, thoughts turn to the new Millennium. Love it or loathe it, the dawning of the year 2000 gives us all cause to look to the future. It was, as always, with the future of Ovacome in mind that your new committee met at the end of September.

As I mentioned the year 2000, perhaps the first piece of news should be about the web site. Hopefully many of you saw Ovacome featured on the Channel 4 Women's Bytes programme. Our website was very well reviewed and, thanks to Adrian Dickinson and other committee members, a new section on frequently asked questions is being added. We are always mindful of ways to improve the services that Ovacome offers. One of our new committee members has volunteered to do a study with a view to Ovacome offering a counselling service to work alongside the Fone Friends network. A regional pilot is being planned: for more details ring 07071 781861.

The raising awareness taskforce is as busy as ever, raising the profile of ovarian cancer. Cards developed for GPs highlighting symptoms, and giving Ovacome's details, are being distributed, and have been used by the Northern Cancer Network in their information on best practice for GPs. The team continues to attend many conferences and exhibitions. After feedback from ward staff, we are developing a new Ovacome brochure. It is hoped that this new introduction to Ovacome will be more appropriate for newly diagnosed patients/family, as well as being useful in fundraising, and raising awareness. It should be available early in the New Year.

Ovacome Day will be upon us soon. We hope that many of you were inspired by the reports of some fantastic events last year, and if you would like to stage your own on 8th April 2000, we will be pleased to supply you with lots of Ovacome literature, as well as supplies of merchandise. We are currently looking at ideas for a national event: more details will follow.

For now, I wish you and yours a very happy Christmas : see you in the new millennium!
Louise

Letter from the Editor

I can't believe it, the Millennium is almost here! When I was a child, my parents always told me that the older you get the quicker the time goes - how right they were. I cannot believe that 1999 is almost over. I hope you enjoy the winter issue of the Ovacome newsletter. I was very keen to get it to you before Christmas as so many of you made enquiries last year when it didn't arrive before the year end.

There is so much going on both within Ovacome and with ovarian cancer at the moment. The article on NICE on page 3 is good news for all of us concerned with the disease and so is the cash boost that was announced recently by Alan Milburn. Professor Mike Richards has been appointed to modernise services, improve cancer survival rates and make UK cancer services "world beating". As we are all aware, Britain currently has some of the poorest survival rates for cancer in the western world and it is good to know that the Government are working hard to improve this. Mr Milburn has been reported to be concerned that many health authorities are refusing to use Taxol because it is too expensive and is well aware that there is too much of a lottery at the present time. He is getting independent medical experts to give him URGENT advice on how they can get the best drugs to treat ovarian and breast cancer into all parts of the NHS. It is hoped that there will be results by Christmas this year.

Our Committee is introduced to you on pages 4-6. I hope you find it useful to be able to put a face to a name and that you find this addition to the newsletter of interest. We are all working extremely hard at the moment to cope with the demands of the charity. The merchandise is selling very well - if you have not received an order form and would like to see one, please contact me in the office and I can send you a copy.

Next year's AGM will take place on Saturday 8th July in the Midlands area, hopefully Derby. The venue will be confirmed in the spring 2000 issue, with a booking form for you to complete to attend. The response regarding a dinner dance was not particularly good and so we have decided to have just an afternoon meeting with refreshments afterwards. There will be speakers attending and I would be interested to hear of any topics that you, the readers, would like to learn more about.
Well all that remains for me to say is "Merry Christmas and a Happy New Year".
Debbie Howells

Fone Friends Update

I have recently moved from London to Scotland and I apologise if anyone has been unable to contact me mid-move. I am happy to be back in my "homeland" and shall continue to coordinate Fone Friends from over the border. The Ovacome office will be able to give you my new phone number.
Our thanks to Mary Etherington for taking on a new role as Area 5 coordinator. Mary is already a trusted Front Line Fone Friend, so some of you will already know her. Good luck Mary.

At the time of writing we have still to fill the vacancy of coordinator for Area 1. If you have a little spare time I think you'd find it rewarding speaking to and linking women with ovarian cancer. If at all interested please contact me for more information.
Best wishes,
Karyn

Call us today 07071 781 861
If you would like to speak to someone who has had ovarian cancer - GO AHEAD and ring
Many women find it such a relief to talk to someone else who has gone through what they are facing
If you are worried about the cost of the call, don't be: all Front Line Fone Friends, Area Co-ordinators and the Administrator will ring you back if asked.

E-mail support list
In April my mum was diagnosed with ovarian cancer and has had surgery and chemotherapy. On her last CT scan there was still a mass in her pelvic region but we are praying that the chemo she has had will hold it at bay for at least the next six months because after then she will be able to have more chemo if necessary.

It has been a very difficult and emotional time since my mum was diagnosed.

I understand how it must feel when you or a loved one is diagnosed so I decided to start an email list to link ladies with ovarian cancer and their families with others in the same situation in order to give and receive support from each other.

The address of the site is:

http://www.onelist.com/subscribe/OvarianCancerUK

Many thanks, I find your newsletter very informative and a great source of support, I thank you all for that.
Kathy Jack

With Complements from Diane

Last issue, in writing about the Essiac herbs, I was responding to enquiries from a number of our members. Over the past few weeks another topic has been raised. This is the use and nature of a substance called hydrazine sulphate.

Ovacome is now in its fifth year and it seems inevitable that those of us diagnosed with late-stage disease who have been receiving conventional treatment intermittently for most of this time will be looking around for other forms of treatment which might help to extend life expectancy and the periods between chemotherapy regimens and give the body time to recover.

As one lady remarked: "what have I got to lose when the five-year survival statistics with a late-stage cancer are so low with conventional care alone?" It is hard to deny the logic of this for those patients for whom conventional medicine can offer no further treatment.

So, what is hydrazine sulphate and what is it claimed to offer?

Well, it has been estimated that about two-thirds of terminal cancer patients die, not as a result of the cancer, but indirectly because of cachexia. This is a wasting process which deprives the body's good cells of vital nutrients in order to feed the appetite of cancer cells. The consequent weight loss and total debilitation leaves the patient open to infections and organ failure.

Hydrazine sulphate, it is claimed, can reverse these metabolic processes and so may stabilise or lead to the regression of tumours and increased longevity. By acting as an enzyme blocker, it shuts down the liver's ability to recycle lactic acid back to glucose on which cancer cells rely for survival. When this process is halted, energy can be redirected to healthy cells for regeneration and repair.

It is more than thirty years since Dr Joseph Gold of the Syracuse Institute, New York, first pioneered this treatment. In his early experiments with mice, he found that hydrazine sulphate, a very inexpensive component of rocket fuel, because of its enzyme blocking capability, able to halt tumour growth and reduce tumour size. Over the years, dramatic claims have been made for remission and long-term survival of cancer patients. But even when lives were not saved, patients are said to report an increased sense of well-being, improved appetite and reduction of pain.

In Russia and in many European clinics, which also use more traditional methods of cancer treatment, this substance is often included as part of an overall treatment protocol, particularly in the later stages of the disease.

But, a word of warning: because hydrazine sulphate is a mono-amine oxidase (MAO) inhibitor it is incompatible with tranquillisers, barbiturates, alcohol and other central nervous system depressants. Other things to avoid include vitamin B6, foods high in tyramine, aged cheese, yoghurt, raisins, Marmite, Bovril, gravy and ripe bananas. It is therefore very important to check on the exclusion list because the efficacy of the drug can be destroyed and patient morbidity can be increased unless the correct protocol is followed.

It is also fair to say that, in Britain, many oncologists who know of hydrazine sulphate believe that its success rate is too low for it to be considered a serious treatment option. One oncologist remarked to me that she believed it to have a 5% success rate compared with the 30-50% success of standard chemotherapy regimens for second and third line treatments.

Another consideration, however, might be the absence of side-effects with hydrazine sulphate. It is claimed that there have been no instances of bone-marrow, heart, lung, kidney or immune system toxicity and it does not cause nausea.

The dosage is small; the most usual regimen is:

• one 60 mg capsule before breakfast for the first three days
  two capsules a day, one before breakfast and another before dinner, on days 4 to 6
• on day 7 and thereafter, three capsules a day, one before breakfast and then one every eight hours, in mid-afternoon and before bedtime with a snack

This regimen is continued for six weeks and is then interrupted by a one- to two-week drug-free period. The course can be repeated.

It is possible to have hydrazine sulphate prescribed by Dr Gold at the Syracuse Institute but he will only speak to qualified medical practitioners who must telephone with details of the patient's weight and height. It is also possible to access the drug via the internet.

So, perhaps it is a case of "you pay your money and you take your choice". But do so with your eyes wide open.

Again, let me conclude with my usual words of warning: do not expect miracles. I do not believe that there are any wonder cure-alls for cancer. It is up to each individual to build themselves a sensible programme of self-help to be used in conjunction with a considered conventional regimen. We each must take responsibility for our own well-being and do so without jumping on too many band-wagons.

Finally, as this issue goes to press, I am celebrating my fifth year of survival. I am not cured, but the quality of my life is good, the champagne corks are popping and I still have hydrazine sulphate on the back burner. It's good to have something in reserve for when the going gets tough!

Merry Christmas and a Happy New Year.
Diane Chapman

Book Review

Cancer as a Turning Point by Lawrence LeChan PhD
The author is an American psychotherapist who had been working with cancer patients for 35 years when he wrote the book. He believes that the cancer patient has reached a point in life when she must evaluate her existence and strive to make changes, so that she is living for herself and fulfilling her own expectations. By doing this, she will be encouraging her immune system to heal itself and so defeat the disease or, if not, improve the quality of life remaining.

He describes four types of meditation and how they may be used in addition. Many case histories are presented to illustrate his philosophy. These patients are participating in their own treatment and thereby taking control of their lives.

The author is a charismatic therapist and, unlike many holistic practitioners, he works side by side with orthodox physicians and their treatment procedures. He demonstrates how the patient can look deeply into her own personality and achieve her goals alone, or with the help of a psychotherapist.
I found his theories interesting, but remain sceptical about their curative powers. However, I do believe that adopting his attitudes would improve the quality of life of the sufferer and make it easier to cope with what may lie ahead.

It is a very amusing and enjoyable book to read. There is a "tongue-in-cheek" chapter on "how to survive in hospital". "A good patient" makes life so much easier for his carers, but this is not necessarily the best way forward for the patient. He claims that any oncologist will tell you that it is the difficult patients who survive.

He scatters his prose with philosophical quotations from writers like Auden, Elisabeth Barrett Browning and Swinburne, and also religious sages. The case histories outlined are fascinating and show the reader how to learn from example.

A good bibliography for further reading is appended.
Dr Roz Eirew
Manchester