I was on a clinical trial for ovarian cancer and had weekly chemo, carbo & paxi. Last chemo was 1st February 2013. Cancer has returned!

[Izzystep]

Had CT scan which showed one deposit grown by 1cm. CA125 now at 1900 although I feel quite well. Oncologist has ordered another CT with a view to starting 2nd line treatment with Avastin. I do not want another round chemotherapy but feel I have no option. Any advice??

[wendydee]

Hi! How rotten, after what seemed like a good result from the trial, but surely the fact that you feel well is a good sign. I do hope so.

I have no direct experience of this but I sit on a couple of Gynae oncology groups in my local NHS as a patient rep. I have heard several consultants say that anyone on a trial can expect at least as good as standard treatment, sometimes better. If this is true, it is unlikely to be the fact that you have participated in a trial that has led to your recurrence. I know that's no comfort to you, when you are feeling really fed up with this, and are, at present, reluctant to go through more chemo.

I am sure someone will give you more info on Avastin, there are friends on here who have had experience of it, I think. Also there is info on the Ovacome website ovacome.org.uk, if you look under resources and find the fact sheets. There is also info on the nurse-led helpline on there. It is 0845 371 0554. They have so much experience and could give you the facts you need.

You're understandably very disappointed and maybe need to gather your thoughts for a little while before making any decisions as to the next step. I hope that the information-gathering will give you a clearer idea of the possibilities. Maybe a second opinion is worth seeking out. I know there are quite a few women of the site who have found that approach is helpful. Good luck with your decision, whatever it is.

Love Wendy xx

[Dahlia in reply to wendydee]

I was in a clinical trial that didn't work for me. I am now on Tamoxifen and Curcumin, and so far that is working. I have a gynecological/oncology/ integrated medicine doctor. If you don't have one available, maybe a naturopathic doctor. I have had no side effects.

[thundering in reply to Dahlia]

Hi. Just surprised. My oncologist put me on Tamoxifen in June to see if it would work before pulling the trigger and starting 2nd line chemo in July which I am half way through. I always thought it was best for people who had had breast cancer treatment and were in remission. Needless to say it didn't work for me. So glad it is working for you!

[Dahlia in reply to thundering]

Hi Thundering. In my case they aren't sure if it is the Tamoxifen or the Curcumin or both together. I have a doctor in Seattle that is using Curcumin on some of her patients after she saw the results I am having. That is in addition to their regular treatment and they are doing well on it. You are right about Tamoxifen being used for breast cancer patients, but for some reason it works for some with OC. You might talk to your doctor about Curcumin in addition to your chemo. Most MD's don't recognize the benefit of alternative medicine, but if you can find an integrated MD he would know what to prescribe. Best of luck to you.

[charlie12]

Hi Izxy

I just want to say welcome...I have just read your previous post and am really sorry that you have had a recurrence. However you sound like a very strong lady and I hope that if you choose to have Avastin that it will give you a good result and many years of remission. I had a borderline tumour in early 2010 and looking back the early months were very scary.

All th he very best to you

Love

Charlie xx

[Hidden in reply to charlie12]

Hi Izzy

I am really sorry you are having to face the possibility of more chemotherapy.

I have nothing to add to the advice you have been given.

Just wanted to say my thoughts are with you.

Take care

Anne x

[leftleg1]

Sorry to hear your news. I had a recurance after just 6 months remission. I agree It is very upsetting having to face it all again so soon, however I am now on carboplatin plus gemcitabine and avastin and seem to be responding quite well so far after 3 cycles. I did ask if surgery was an option. Perhaps this is something you could explore or as mentioned by others you can always ask for a second opinion to see if there are any other options, but ,it does seem like most of us get one chemo or another when we recur.

[Whippit]

Hi Izzy, It's rotten to be told the tumours are growing back. I'm not sure there are many options apart from chemotherapy and depending on where you had your first treatment and whether it is a centre of excellence it could be worth asking for a second opinion.

I'm preparing for my second line of chemotherapy but have had time to look round and compare a few options. I have relocated so I can be treated by the Royal Marsden and we're currently looking at a combination of surgery and chemotherapy but it seems to be dependent upon quite a number of things. I recall being told that tumours have to be in one site before surgery can be considered, and they definitely won't consider surgery if there is any sign of ascites. I feel I'm in good hands now and if there's something that will help me the oncology team will provide it. In my former health care trust I was only offered drugs and treatments that came within the budget set by the trust.

I have explored homeopathy as a compliment to chemotherapy. There is no double-blind test for homeopathic treatments but I've done well since starting it 6 months ago. I shall never know whether this complimentary medicine has made a difference or not. I started to relapse in November 2012 but the process has been slow even though I have very aggressive tumours. I paid privately for a consultation with a homeopathic doctor who specialises in oncology and she prescribed a herbal preparation - Iscador which is mistletoe from an apple tree. She gave me a referral letter so my GP was able to prescribe it on the NHS on that basis. There are other theories too, such as taking Ibroprofen, the Budwig and the Anti-Cancer diet alongside exercise, meditation, yoga, etc. These are a compliment rather than an alternative to chemotherapy and I take the view if they make you feel better then it's all to the good.

I felt my back was against the wall so I decided to look into treatments that compliment chemotherapy so long as they didn't have an adverse effects. My GP told me he knew nothing about homeopathy. He said the difference between homeopathic preparations and herbal preparations is that the former do no harm because basically they do nothing anyway, whereas herbal remedies are thought in some circles to make a difference but he told me they can have nasty side-effects. He described them as natural forms of some of the drugs used today which are produced synthetically in laboratories.

I have heard that a few hospitals look into complimentary homeopathy alongside chemotherapy so it might be worth asking your oncology team what they think. It's standard practice to use integrated medicine for oncology in some European countries but not the accepted practice here.

So it seems there aren't a lot of alternatives but there are things you can tweak round the edges if that's your cup of tea.

Hope this is helpful. x Annie

[Izzystep in reply to Whippit]

Highly helpful Annie. Thank you very much. What is the Anti-cancer diet? X

[Whippit in reply to Izzystep]

Dear Izzy - there's a book called, 'Anti-Cancer - a New Way of Life' by David Servan-Schreiber. He was a medical consultant - not oncology but a completely different discipline but he was traditionally trained and was against diets or homeopathy to combat cancer. He spent the next 15 years of his life exploring cancer and diet culminating in his book. There's a website devoted to his work at anticancerbook.com.

The book is popular and the diet isn't cranky so it's easy to follow. When I was first diagnosed I bought it and followed it to some extent picking out the bits I liked. It's a good read. You can buy it from Amazon.

The website will explain more. It makes a good read. xx Annie

[Izzystep in reply to Whippit]

Thanks again Annie. I will check it out in the morning. My daughter has an Amazon account. I will ask her for an early Christmas present lol xxx

[Whippit in reply to Izzystep]

lol xxx in that case - Happy Christmas! xx

[citrine]

Sorry to hear your news Izzy. Sending love, hugs and best wishes.

Mary xxx

[Wiganw]

Hi izxy

I have not long finished my second line treatment after only six months remission. I think Annie's advice is excellent. I feel I rushed into second line chemotherapy too quickly without exploring all the options. I had carbo and gem and I must say I struggled with fatigue and low blood counts. Avastin was not available too me in Wales and not recommended by my oncologist . My oncologist changed as I went into ssecond line chemotherapy so I did not get second opinion but I would recommend you do as I think now is time to do it. The royal mmarsden is best. I have also heard that radical surgery is an option and I will be asking my oncologist about this. I am also looking at complimentary therapy and diet. I have been told there is a centre in bristol which specializes.

Try and look at things before chemotherapy starts as its hard to concentrate and assess once you start.

Good luck andhope it goes well.

Sx

[wendydee in reply to Wiganw]

It's called the Penny Brohn Centre. They have a very informative website. Well worth a look

W xx

[Sunfleury-UK in reply to wendydee]

I went on their 2 day 3 night introductory course and found it incredibly helpful, positive and refreshing. It is a beautiful place and very comfortable- the ideas are very much there for the individual to try and then see how they suit- light touch and aimed to integrate with standard medical practices. The food is delicious, garden and vista stunning and everyone involved that I met very caring and respectful of our own outlook- the accomodation was as you find in a decent hotel/ spa!! There is a brilliantly written blog by Jane Knight which describes it much better than I,( just google her name and ovarian cancer)!

In short I would thoroghly recommend it!! Sx

[Izzystep]

Thank you all south for your advice, kind words and support. I have just heard that I am to have fluids pumped into me on the 9th September followed by CT Scan on the 10th. My appointment with Barts oncology us on the 19th. I don't think surgery is an option but I will certainly follow Annie and Wendy's advice on alternative therapies and I will speak with my oncologist about this. I have been offered Avastin with my 2nd chemo treatments and the oncologist says that the Avastin would continue when I have finished treatment. I am putting my faith in Barts Hospital and trust their judgements but its good to seek a 2nd opinion, which I will. Thank you all again and may i wish you all well in your battles against this rotten disease. Love IZZY

[Hidden]

Hi Ally... I'm platinum resistant too...so my own treatment options are limited too. However, on my last visit to my oncologist, I was told about a trial of an inhibitor drug and I may be eligible to go on that when I get a recurrence. That's what I'm hoping. Would this type of drug be suitable for your own condition I wonder? Love Tina x x

[Hidden]

By, the way... I don't think the drug is Selumetinib... (It may be) but it's still a PARP inhibitor. The results for the first trials for Selumetinib were very encouraging. love Tina x x

[Hidden in reply to Hidden]

Hi Tina,

The trials for Selumetinib are given to people with a low grade ovarian cancer or peritoniam, and so far has showed to halt the progress of low grade cancer, so it is very promising if the cancer is low grade xx

[Hidden]

Hi there.. I can really understand how you feel. I hope that, whatever you decide, things work out positively. Sending you all good thoughts. Love Tina x x

[Hidden]

Dear Izzy,

I think you are very wise to speak to your oncologist first before embarking on anything complimentary (or alternative) most alternative treatments have not been proven, so please do be careful, and there are a lot of people that will promise a cure and be only too ready to take your money... but if there was a true cure we would have heard about it by now...you can always check on the cancer research website too as they have done a lot of research into the claims of miracle cures.

Best ishes love x G x

[Izzystep in reply to Hidden]

Gwyn & tina. Many thanks for your advice. I must say that I would always check with my oncologist before doing or taking anything. It's well worth speaking to them about further trials or alternatives to chemotherapy. My hair has just grown back and I'd quite like it to stay a while. It's do nice to "talk" to others who have been or are going through this nightmare. My thoughts are with you all xxx

[thundering]

Hi. I am very sorry that your cancer has recurred after so little time. Thinking of you. God bless xx

[Aurelie in reply to thundering]

Hi Izzy and welcome. Very sorry to hear the cancer has returned and hope they find something that works well for you.

I'm afraid I have no advice to give you as fairly new to all this, but just wanted to wish you well and will keep you in my thoughts.

Jill xx