Stopping Treatment

[jeanv]

Have been to see my oncologist today as I have been having problems with ascites this while on Topotecan. Have had 5 sessions since September and at my scan half way through there had been some improvement. He does not want me to have any more chemo and have quality of life rather than quantity. I am upset and angry at the same time. I am not ready to give in, but the only option he has offered me is to be referred to another hospital to see if I am eligble for any trials. He says I have months rather than years. I dont think I am thinking straight at the moment but wonder if anyone else has experienced this. Jean

[Hidden]

Dear Jean,

This is such a sad message to read, and room 101 for most of us! You are reacting as most of us would - anger, shock, fear, etc are all in the mix.

The first thing to say is that I suspect you are the only person who can really assess whether your Oncologist is being realistic, or giving up due to lack of resources. Obviously, your decisions depend upon which you feel is happening. I think this is largely about how you feel.

If you feel you want to; go for the referral with conviction and hope, and find a doctor who you can work with. Remember; many patients have 'refused' terminal prognoses and lived.

However; the other route is to (after the shock has diminished) decide that this is indeed a time to see what happens without drugs. Again; don't overlook the fact that some have found remission when expected to die. Your Oncologist cannot predict the future.

If possible, talk this through with loved ones and professionals. You might ring Samaritans, who have a good basis in discussing life/death decisions with people in total confidence, with compassion, but without involvement.

Much love, and hopes for you at this frightening time,

Isadora.

[Meryl]

Dear Jean

As Isadora said, such a sad message, and one that we probably all dread the longer we're on chemo for this horrible disease. But I urge you to look for a trial - I've taken part in two so far and the doctors and staff are quite inspirational. I've found doing something positive is motivating, even if the trial won't cure me, they have really helped me to stay positive as I feel I'm doing everything I possibly can. My main reason for this message is to let you know that I feel for you at this time, send you hope, strength and love. Meryl XXXXX

[sarah1963]

Dear Jean

All I can add to Isadora's very sound words is to describe what has happened to me.

I have had carbo/taxol, Caelyx and Topetecan and my cancer has never really gone away. The Topetecan worked to a certain extent but like you its effect was limited. Soon after treatment I had a number of large cystic tumours in my abdomen. I was told that I could either have carbo again or be referred for possible trials. Whilst I waited for a referral my pain levels increased and I was on Oxycontin all the time, topped up with Oramorph. I was also allocated a lovely palliative care nurse. I am just telling you this so that you know - things didn't look too rosy!

The first hospital I was referred to saw me, but didn't actually have any suitable trials. I then got myself referred to Professor Stan Kaye based at the Royal Marsden in Sutton. I didn't have time to waste and we wanted to be satisfied that we had done all we could. The referral gave us the benefit of a 2nd opinion and the possibility of a trial.

I am now on a drugs trial which is proving very successful. Within only a couple of weeks I could ditch the pain relief and now feel I have my life back, if only for the time being. I have blogged about the trial in detail (XL 184) so I won't repeat it. I don't know whether this particular trial is still open or would have been suitable for you but they have many others.

All our circumstances are different. I don't know where you live or how poorly you are feeling. Travelling might to an issue. All I can say is that my experience of a trial has been positive. Do you know where your oncologist thinks you should be referred to and the reason for this?

Lots of love. You arent alone. Please keep in touch.

Sarah

[Frenchdeb]

Dear Jean

It is indeed the news we're all dreading, I cannot imagine how you must be feeling.

However, if you've been offered trials, then why not give them a go if you feel up to it? I can only relate the stories of two dear friends of mine. Both have cancer although not ovarian. One has pancreatic cancer and was told three years ago that he had months to live. He asked for a second opinion, changed hospitals and treatments and is still going strong. Two of his fellow patients with the same form at the original hospital were dead within months.

Another friend of mine was told two months ago that she is now terminal. Next month she sets off for the USA to be the first Briitsh woman to take part in a completely new and radical treatment which has so far proved effective in mice! She knows she has to pay, and she knows she may have to sell her house, she knows it might not work but she's going ahead anyway.

Only you know how far you want to take this but the choice between quality and quantity of life should be yours and yours alone, imho.

With love and best wishes whatever you decide.

Deb xx

[Hidden]

Hi Jean

Indeed different doctors do different things. I had problems with ascities while in Topotecan, and had to have my lung drained, but the doctor continued until no 6 was done, by which time my Ca125 was climbing again. He then decided to give me gemcitabine and treosulfur, which has worked well so far, and my count is down to 19 after 9 treatments. At the moment I am having a break to see what happens, but I had no side effects, and it was eay to administer (and short!). I should go fo a second opinion as, unless you are really suffering, (and you don't say what they have done about the ascities) it always pays and if you can prolong your life go for it.

good luck.

Viv

[BusyLizzie]

Hi Jeanv,

I suspect your and my local hospitals are similar. They go through the NICE options...

1) Carboplatin/Taxol

2) Caeylx

3) Topetecan

Then you fall off the end of the tube.

If I were you I would go to your GP and ask for a second opinion. I can give you the top 3 names in the country I was given by ovacome if you want to mail me. Make it easy for your GP by deciding which one you want, talking to their secretary so you know roughly what the wait will be like, get fax numbers, email addresses from the secretay. Then get your GP to refer you to them.

There is a weekly taxol based SAPROC trial running if you want to try and get on that, but it depends on where you live. It sounds like it will be widened to more sites later this year.

Love Lizzie

X

[jeanv in reply to BusyLizzie]

Hi Lizzie, How right you are I have been on the same regime as you, but when you read what other people blog there are other treatments available, but I wonder if this depends on where you live in the country. I live in the North East but am prepared to travel if necessary to get treatment. I am definitiy considering getting a second opinion. Love Jean

[BusyLizzie in reply to jeanv]

Hi Jean,

It is simple to do. Please do it and then even if you decide not to proceed with any more treatment, at least you will have the peace of mind that you left no stone unturned.

Love Lizzie

X

[wendydee]

Hi Jean, I just want to add my good wishes to the others on here. If you feel you have the strength to fight, go for it. The nurses on the helpline may help you to clarify things (0845 3710554). The info about clinical trials sounds as if there are possibilities you can explore. You don't sound as if you're ready to accept what your oncologist told you, and you will, I hope, find some of the suggestions in this string of answers useful.

In the meantime, we are all sending you so many positive vibes and good healing thoughts for the next stage in your battle

Love n hugs

Wendy xx

[jeanv]

Hi, Many thanks for your good wishes and comments. After such a tramatic day yesterday, I got up in fighting mode this morning and decided I was not going to take what my oncolgist said lying down I am going to fight. Tomorrow I am going to contact my specialist nurse in the hope that she can answer some of the many questions. I know that there are other treatments out there, but do you think it is a case of where you live in the country and should they all be a standard thing. Anyway I will let you know how I get on. Love Jean

[BusyLizzie in reply to jeanv]

Professor McNeish says he is trying to kick other parts of the country up the backside to do more trials. The SAPPROC one he is hoping to roll out about June and it could come to an area near you?

Love Lizzie

X

[Hidden]

Dear Jean - You have had such a terrible time but I want to thank you for sharing your thoughts with us and posting up your blog. It's generated so many interesting and insightful responses. I'm so glad you're feeling on fighting form today. Long may it continue. It's disturbing to think we're given different - dare I say - inadequate treatments and diagnoses depending on where we live. I for one long for treatments to be standard across the UK and I would have no hesitation in moving to Sutton to attend the Royal Marsden or Toulouse which I understand is an international centre of excellence for Ovarian Cancer.

I wish you luck and send my very best wishes. You're an example to us all!

love Annie x