Regular features

Letter from the Chair

Hello and welcome to the summer edition of our newsletter.

Last April we held our first strategy day to review progress and make plans for the future, and one of the major developments was to restructure the committee. Alex Whates has rejoined us as Chief Administrator, our first part-time employee, and a central point of contact for enquiries. Alex is kept extremely busy, as you can imagine, and creating her role has been a major step to becoming a more professional organisation. Thankfully, Alex has reached the point where she feels she has a more amicable relationship with her computer: they were a bit wary of one another at first, but the computer now seems to know who's boss!

At that strategy day we agreed that Ovacome's uniqueness was twofold. First, it is the only charity dedicated to the ovarian cancer community. Secondly, we believe we provide a "personal touch" in creating a channel which puts women with ovarian cancer, and their friends and families, in touch with others who can relate personally to their experiences. Support can be given in a number of ways, and linking people is very important.
Our new website is one way of doing this and of raising awareness of Ovacome. It has probably been one of the factors helping to raise our membership from 800 to 1300 in the last year. I was very encouraged to read that a lady from Australia found out about us via the Internet, and hope she was successful in her appeal for penpals. The Internet is an extremely useful tool in keeping us up to date with topical information from around the world and we are actively searching for new titbits to pass on to you.

So, what about the future? Well, lots of good things are touched on in this newsletter. Primarily, though, we know that 75 women are diagnosed with ovarian cancer every week around the country, and as part of our raising awareness programme we will be focusing our efforts on finding these women and making contact with them. In doing so we can bring Ovacome to their attention and, hopefully, help support them through a very difficult period in their lives. Louise Baine is our new Task Force Leader, and she is busy contacting the medical professionals and health workers who will help us make this possible.

Finally, and sadly, this will be my last Letter from the Chair, as I complete my year in this role on 11th July, at the AGM.

I am very pleased to be handing over my responsibilities to Madeleine Gold, who has been with Ovacome since the launch back in 1996. Since that time she has been responsible for press, publicity and raising awareness issues and, although I will be sad to leave, I know that the charity will be taken forward by someone with tremendous energy and vision.

The next phase of Ovacome's life will be exciting and rewarding and I wish Madeleine and the Committee every success in meeting the challenges ahead. I have been proud to be part of Ovacome and look forward to watching it grow and prosper in the years ahead.

I wish you all a pleasant and restful summer, and hope to see you at the AGM on 11th July.
Caroline Elliott

Letter from the Editor

Firstly, I thank all of you who sent stories and tips for the newsletter. I have been inundated with mail, which is much appreciated: without your input the newsletter would be very empty.

Secondly, I would like to mention that Ovacome has had a very busy few months of meetings. We had a strategy meeting in April to discuss our future and during the next couple of months each task force (raising funds, raising awareness, publications and Fone Friends) will hold individual meetings. Ovacome is growing very fast and it is our intention to offer the best service.

I have had a very busy quarter. I travelled to Paris in February to talk at a conference on "Patient Advocacy Groups: Why Not in Europe?" – an eye-opening experience! I was with Kathy Kritchner from the Patients’ Association and two very dynamic women from the USA. The audience consisted of journalists and TV reporters. As well as talking, I listened and learnt about how patients are "dying of politeness" (Kathy’s words) and how the Patients’ Association is keen to rectify this urgently. Media coverage was vast and included The Times, The Independent, The Express, The Daily Telegraph, The Health Service Journal, Radio 5 and LBC. Copies of articles can be obtained through Ovacome from me. The Patients' Association produces a newsletter entitled Patients' Voices: if you would like a copy please call them on 0181 423 8999.

I appeared on Radio 2 in April on "Cancer and You", which runs throughout the year. The month of April focused on women’s cancers and I was interviewed with Shirley Michael (another Ovacome member). If you would like to hear the interviews I can send a copy to you. Or you can request a copy of a booklet and information leaflet on Women’s Cancers from Cancer and You, PO Box 27, Mortimer, Reading RG7 3UL.

During May I spoke at another conference, "Medicines: Whose Choice? Patient or State?". This again was a very interesting day, opened by Philip Lader, the US Ambassador to the UK. Speakers included The Rt Hon Virginia Bottomley, JP MP, Dr Howard Stoate, MP, Professor Trevor Jones (Director-General of the Association of the British Pharmaceutical Industry) and Professor Alan Maynard (Professor of Health Economics at the University of York). This was a major healthcare conference, looking at the issue of access to new treatments on grounds of cost and covered the question of which prescribed medicines should be advertised. I was totalled engrossed for hours. It is great for me and Ovacome that I attend these meetings because I am learning constantly about activity in medical society.

On 18 May Madeline Gold and I participated in a live press link-up to the USA about the results of the paclitaxel (Taxol) clinical trials. Madeline has written elsewhere (page 13) about this day.

Experiencing cancer has taught me to live life to the full – so much so that I completed the London Marathon in April. Apart from the weather – cold, wet and windy – I thoroughly enjoyed the experience and can honestly say it is the best achievement of my life so far. When they place the medal over your neck upon completion it makes all the hard work and training worthwhile. Would you like to run for Ovacome in 1998? If so turn to page 16 to find out more.

I hope you all have a lovely summer and I look forward to liaising with you again in the Autumn issue.
Debbie Howells

From our postbag

Has this happened to you?
I am 39 years old and after a very poor prognosis last May I was clear in November following Carboplatin chemotherapy. I would like to highlight, however, that in February of this year I started to suffer with attacks of giddiness and bad headaches, but as I was due to see my oncologist soon, my GP was quite happy to state that I was suffering from vertigo. A brain scan has since revealed abnormal cells for which I will have to receive two weeks radiotherapy. Apparently this is very rare but the cells are break-aways from the ovarian cancer and the chemotherapy was not very effective on the brain.

I feel that it would be wise for people to ask for a brain scan because, as we are all aware, time is of the essence and forewarned is forearmed.

Has anybody else had this problem? If so I would like to hear their comments and views.
Kim Wright
Glos

Male Fone Friends
I was looking at your magazine when my wife went in to Bronglais Hospital in Aberystwyth for her chemotherapy and saw your request for male Fone Friends. Wendy, my wife, had a hysterectomy and was diagnosed as having ovarian cancer just before Christmas 1996. It was thought that the operation had removed the cancer but in August last year metastases of the ovarian cancer were found on the lung and since then in the shoulder bone. The first course of chemotherapy (Cisplatin) made her very sick and she had a horrendous chest infection which caused that to be stopped half way through. In February this year she started Taxol treatment and is responding well, although she does still get a lot of pain in her shoulder.

We live in Newtown in Powys and our phone number is 01686 625493 or you can reach us on e-mail. I would be happy to help others who are going through what we have been and are going through.
John Bridge
Powys

Keen to communicate
Janet Ahlers from the Netherlands is keen to communicate with other ovarian cancer patients via e-mail. Her address is fam.ahlers@wxs.nl.
Carroll Anne Maunder is also keen to communicate with ovarian cancer survivors and can be contacted via e-mail on cmaunder@chesapeake.net.

Endometriosis and rise in CA125 level
I first contacted OVACOME seven months ago after I had a scan which showed a lump on one ovary and a positive CA125 blood test. I was very frightened and the women I spoke to were so kind and brave it helped me so much it is difficult to put in to words.
I had a hysterectomy and bilateral salpingo-oopherectomy in June but no sign of cancer was found. I had fibroids and endometriosis and have since learned that endometriosis may cause very high CA125 levels.
Lynda Howell
Eastbourne

Has this happened to you?
In 1994 I was diagnosed as having IBS. This went on until the pain was unbearable and the doctor sent me to see a specialist. After numerous tests it was decided that I had lymphoma, but this soon changed to ovarian cancer which had spread to the lymph glands. I was immediately given a six-month course of chemotherapy, extended to eight treatments, and I responded very well. However, eight months later my blood marker level was rising and after a scan it looked as though the left ovary was the problem. In December 1995 I underwent a full hysterectomy.

For the next year everything seemed to be going well until at the beginning of 1997 I started to have problems which resulted in a brain tumour being removed in March of that year. The operation was successful and I was hopeful that the cancer had gone but this was not to be. Unfortunately, 12 weeks later it was back and I underwent a course of radiotherapy which seemed to do the trick. Once again though in February of this year I had yet another operation to remove a second brain tumour. I am now having five months of chemotherapy to kill off any remaining cells.

I have been told this is very rare but am keen to make contact with any other readers who have suffered with similar problems.
Grace Coorland
West Yorkshire

Thank you, Kerry
I would just like to say thank you for the newsletters which improve with each publication; so much so that I wish we could have even more editions -– any chance? I am sure the team work very hard at present with the current four editions but it shows how much we readers depend on your information. If there is any way that we could contribute I would be happy to do so.

I sometimes feel very vulnerable when orthodox treatments do not work, as at present, and then I feel that the responsibility is on me for self-healing with my complementary therapies.

Is there any way, we the readers, could hear about ladies who have overcome cancer or who at least put it behind them for a while? It would be so encouraging to hear positive stories.
Brenda Davison
Farnham

Editor’s note: Right now, producing the quarterly newsletter keeps our hands full, so production monthly is not possible at present, but I am confident that, as Ovacome expands, we will be able to offer additional publications to satisfy members' appetites for more information.

Fone Friends

Sadly, Sharon Eastwood has stepped down as Fone Friends Task Force Leader and Co-ordinator. I would like to thank her, on behalf of the committee and all the members of the Fone Friends network, for her hard work and dedication over the past two years. Without her vision and commitment Fone Friends would not exist today.

Sharon has also asked me to thank the ladies of Fone Friends who have willingly given their time and supported her in her task.

I have now stepped in to Sharon’s shoes and am currently familiarising myself with the network. She’s a hard act to follow, so please bear with me!

Calling all men

Chris Chatwin welcomes calls from any men accessing Ovacome for information and support. Chris’s wife has had ovarian cancer for the past four years and he hopes that his experience may benefit other men in a similar position. To contact Chris ring the Ovacome number now.

New Area Co-ordinators

We have two new Area Co-ordinators, Avril Ehlich in Area 2 and Louise Baine in Area 9. They are waiting for your calls. Ring the Ovacome number now.
We are also looking to recruit new co-ordinators for Areas 4 and 6. If you are interested and would like more information please contact me on the Ovacome number or send an Email.

Urgent: Scotland and Northern Ireland

Joan Hadden and Mary Shenton are Fone Friends co-ordinators in these areas. They have received very few calls, so please spread the word. We are sure there are ladies out there who may benefit from Ovacome.

With best wishes,
Karen Connor

With Complements – Diane

This issue I had planned to write about the benefits of relaxation, meditation and visualisation, but these lifestyle issues, important though they are in helping to improve and maintain general health and well-being, must stay on the back burner for the moment. Instead, I have interesting news of my own recent experiences in dealing with a rise in my CA125. The last few months have been difficult, experimental and finally very successful, so, when thinking about this season’s contribution to the newsletter, I decided that now was the time to share my latest, personal findings for keeping well and in control of my cancer.

A Fresh Look at Treatment

It was at the tail end of last summer that my regular blood tests showed a rise in my tumour markers and I was again offered chemotherapy. Topotecan was the drug of choice but I felt very fit, life was good and, having already survived two lots of surgery and two chemotherapy regimens, I felt unwilling to rush into yet more treatment.

At this stage, I must record that I have no complaints about the way my cancer has been dealt with. I have had the best of advice, care and treatment since my diagnosis of a stage three, grade C ovarian cancer in December 1994 and I have maintained excellent health and quality of life.

Gerson Diet

So, why did I want to risk a breakdown of my health by turning my back on doctors who had served me so well, so far? Well, to begin with I did not rule out the possibility of accepting conventional treatment eventually, but for the moment, I reasoned, a body can only take so much chemotherapy before the immune system becomes incapable of bouncing back. I wanted to try a radical diet therapy – the Gerson diet. I have always believed that diet is the foundation of any self-help programme but I wanted to go beyond what I had been practising as part of my lifestyle change following my diagnosis. I hoped that Gerson’s theory of detoxification with coffee enemas (yes, I did say coffee enemas!) and super-feeding with organic fruit and vegetables, along with a daily intake of 13 freshly pressed fruit and vegetable juices packed with live enzymes to attack the cancer cells, would help to arrest the rise in my CA125.

At the very least, I told friends, family and doctors, I would die healthy! No one was amused and I am grateful that the wonderful support I have received from the beginning continued in full measure. Watching me dice with death must have been very stress-ful but my wonderful husband manned the juicing machine and scrubbed carrots till 10 o’clock at night without complaint.

It is an amazing diet, rigorous in the extreme and not for the faint-hearted, but it has many well documented successes with a variety of cancers. The exact rationale of diet, enemas and supplements is worth knowing about and I will give a fuller explanation in the next issue. In following the regimen, I certainly felt that my body was being cleansed of all the toxic build-up of three years of treatments and a lifetime of absorbing pollutants from food, air and water. Never-theless, despite meticulously following the diet for many months, my cancer refused to be beaten. For a while, the CA125 steadied and I was symptom-free but quite suddenly at the beginning of February I had to accept that the Gerson diet was not going to be enough. My abdomen was beginning to fill alarmingly quickly with ascites and for the first time since my initial diagnosis, I began to feel seriously ill.

Hyperthermia

Following the advice of a fellow Gersonite, with almost identical problems, on 4th March, I booked into the Klinik St. Georg in Bad Aibling, 45 minutes drive south of Munich. There they treat cancer of all kinds with an holistic approach which marries minimal amounts of chemotherapy with immune boosting injections, intravenous infusions of vitamins and minerals to improve nutritional status, ozone therapy, a range of massage therapies and, at its core, a heat treatment called hyperthermia.

My initial stay at the clinic was for two weeks. Over this period, 15 litres of ascites were drained from my abdomen. Through the catheter used for draining, on two occasions I had 2 litres of a carrier solution with 50 ml of cisplatin dripped into the abdomen where it remained for six hours. During this time I was given 60 minutes of hyperthermia. In total, during the two-week stay I had six 60-minute hyperthermia treatments, only two of which were combined with a cisplatin infusion. I have since returned to the clinic twice for stays of one week. Only 3 litres of ascites were removed the second time and only 30 ml of the cisplatin solution were infused to coincide with one of three hyperthermia treatments. After this visit, I was sent home with a two-week course of cyclophosphamide chemotherapy tablets. When I returned to the clinic for the third time, there was no more ascites and a scan found no evidence of any tumours! Whilst my CA 125 is still not within the normal range, it continues to fall steadily and I am once again in remission – nothing short of miraculous!

Realistically, this may not be the same for everyone. To begin with, hyperthermia and inter-cathetery chemotherapy works particularly well where there is ascites. Secondly, I was given regional hyperthermia (heat directly onto my abdomen). Had I been in better shape when I first arrived, I would have been given extreme whole-body hyper-thermia and this is not without its side effects. Patients undergoing this treatment often experience nausea and extreme weakness for some days afterwards.

Nevertheless, this is a very exciting and effective treatment. The heat has a number of effects on the body. Firstly, it kick-starts the immune system and then goes on to kill or seriously weaken cancer cells. Even tumours which were previously resistant to chemotherapy respond to much smaller amounts, following hyperthermia, whether it is applied directly into body cavities or by an intravenous infusion.
Of course, this treatment has to be paid for and I was fortunate in that I had a lump sum payment to fall back on, having taken early retirement from my lecturing job. However, whilst I was in Germany I met an English girl who told me of a holistic cancer clinic in Tunbridge Wells, Kent. It is called the Liongate Clinic and is owned by Dr. Fritz Schellander. Last summer he visited a number of German clinics and, as a result of his research, invested in a moderate heat whole-body hyperthermia machine. Anyone interested in an initial consultation with Dr. Schellander should expect to pay around £75 for a visit lasting about one and a half hours. He can also advise on treatments available in a number of German clinics. Telephone 01892 543535 for an appointment.

Treatment, Healing or Both?

And what of my Gerson diet? Well, I now follow it in a modified way. I believe that the principles are very sound and if I can arrest my cancer with a range of treatments designed to get rid of the symptoms I can then help my body to heal by maintaining a rigorous approach to diet and lifestyle in general. Well, that’s the theory anyway, and if it keeps the patient happy and positive, who is to say it‘s wrong?

God bless and keep smiling!
Diane Chapman

Copies of Diane's booklet, With Complements, are still available. Follow this link.

Book Review

Angela Wilkie: Having Cancer and How to Live with it
Hodder & Stoughton, London, 1993, £8.99

Angela Wilkie was a journalist, 36 years old and a mother of two young children, when diagnosed with ovarian cancer. This book is the story of her illness and helpful advice about living with it.

I knew I would like the book as soon as I read the blurb: "I’ll tell you what this isn’t. It isn’t a story about how I bravely battled against cancer and lived to find true happiness. It isn’t about how facing death made me a better and nicer person." Hurray, I thought. Like Angela, I feel that cancer has taught me nothing that I wanted to know, although we always try to salvage something good from the experience.

Angela had to fight to have her symptoms taken seriously, went through surgery and chemo, crawled back to health, relapsed and had to endure more surgery. She haemorrhaged and nearly died, had radiotherapy and slowly recovered, writing this book 18 months after her treatment. Grim stuff, but she tells it very well and with terrific humour. Some parts are moving, others are funny. I liked the way she points out that life isn’t unrelieved gloom when one has cancer: as she says, you can do only so much wailing and gnashing of teeth before the mind gets bored and changes the subject. I liked the positive tone of the book, but she doesn’t flinch from the negative. She doesn’t avoid describing her despair, but also singles out moments which gave her strength to keep fighting.

The second part looks at having cancer, in other words at all the external things we have to deal with on top of the disease itself: the often sensational way cancer is discussed in the media; our partners, families and friends and how to cope when they don’t react in the ways we want them to; doctors and nurses, hospitals, drugs; visualisation and other calming techniques. It is well written and helpful.

The book is a reminder that there is life after, and indeed during, cancer; we are always more than our disease. I felt really cheered and heartened by reading it. Although published five years ago and might not be easily available in book shops, it does seem to be widely kept in libraries, so you should be able to find a copy.
Claire Duchen
London