Feel I am quietly being written off - please help

I am feeling sorry for myself so please forgive me.. I have stage 4 OC and over the last few years I have had carbo/taxol, surgery, Caeylx and Topetican. I would be prepared to pay for Avastin and would go on any drug trial I was offered but I just don't know how you get to hear about these things. I know I should be fighting my own corner.. I have two teenager boys that I need to be around for. Please ladies can you help me with strategies for getting information and being more assertive. How do you get an 'advocate'? What is the ICON6 trial? When and how do you persuade someone to give you Avastin? Am I stuck at my local hospital? Sorry to sound so pathetic I know that I am not the only one having to make this journey

Thank you.

Sarah

16 Replies

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  • Hi Sarah,

    Of course you feel as you do; as you say: this is a journey you are 'having ' to make , rather than opting to.

    I detect from your message that you are not feeling supported or informed by your hospital. If you don't have, or don't get on with your specialist nurse, I would start with Macmillan Cancer Support. They are just about certain to have a local group, and their website can answer many of your problems and questions. I'm just about sure that you are entitled to choose which hospital treats you, so if you want to change, just ask the hospital you want to go to to see you, or your GP to refer you to them. You could also ask your GP to set up a second opinion for you.

    I hope you feel more positive soon.

    Very best wishes,

    Isadora.

  • Dear Isadora

    Thank you so much for your support. I feel like I reached crisis point yesterday which may be needed to happen in order to do something decisive. So for better of worse I have asked my GP to refer me to the RM. He agreed that my local hospital had taken me as far as they can.I didn't feel supported and had been in a state of limbo for the last 6 weeks. Without your encouragement and practical advice I don't think I would have got there on my own. I feel 100% better today and have taken the dog for a good long walk across the fields.

    Very Best wishes

    Sarah

  • Hi Sarah

    You must be feeling very abandoned if you aren't getting any support from the hospital. I assume that you have asked the onocologist and/or specialist nurse if there are any trials that would be open to you. I know that hospitals are tasks with recruiting suitable patients to trials. If you aren't getting anywhere with the hospital I agree with Isadora - ask your GP for a referral to another consultant for a second opinion. Macmillan Cancer Support is also a good lead - and if you have a Maggie's Centre near you perhaps they could help.

    I do hope you get some positive help soon. I will be thinking of you - it must very difficult to go through all this uncertainity while being a Mum to teenagers. They need so much reassurance and understanding.

    Angela

  • Dear Angela

    I'm not sure if you can see my reply to Isadora (above) but I just wanted to let you know that thanks to your support I asked my GP to refer me yesterday and he agreed that my local hospital had probably taken me as far as they could. I feel so much better for having taken back the initiative. Even if I am told by the RM that there is nothing more for me at least I won't be plagued by the 'what if' question.

    We have opted to keep almost everything from the boys (11 and 15) so keeping up a cheerful act is hard at times but I don't want to feel guilty about burdening them on top of everything else.

    Much happier today.

    Sarah

  • Hi Sarah

    dont feel pathetic, your not. This journey we are all on at different stages is tough enough WITH good support and the confidence in our Drs and Nurses so i cant imagine how awful it must be if like you you dont feel your getting the right information and answers. I agree with isadora and Angelas answers but also re trials I found the Nurses on Cancer Research Uk really helpful and full of understanding and good common sense( something we have little of when all we can think about is staying alive!) Try 0808 800 4040. I dont know if the Icon6 trial would be suitable for you, but they will be able to tell you all about it.

    Change your Dr or hospital if you feel no confidence in them, this is not about thinking of their feelings or sensibilities now. This is about YOU as a priority and how to get the very best care for the best outcome for you. Your Gp is a good starting point to make the change.

    I know that Avastin is one of an armoury of drugs at Oncologist's disposal, whether you should be on it is a decision for an expert Oncologist so do ask that question too and take someone with you to note any answers.

    You will feel more positive once you take back more control over your own treatment and that will enable you to be your OWN advocate, this is the very best kind as who cares more about what happens to you....than yourself?

    very best wishes

    let us know how you get on

    Lindy

  • How right you are! I have taken what little control I have, and arranged for my GP to refer me to another oncologist. I feel so much better. It was an emotional day yesterday but I managed to stop feeling sorry for myself long enough to make some telephone calls and take a few decisions. I wouldn't have done this without your support and good sense. Thank you so much.

  • Sarah, please don't give up hope. I don't know where you're being treated but it sounds like you're not getting the support and information you need. The fact is that there's a number of specialist cancer centres around the country where you can talk to oncologists who specialise in treating OC. I'd suggest you call the Ovacome support line and ask them for more specific info.

    The fact is that trials and new drug combinations are coming thru' all the time and because you have such a strong fighting spirit you need to find an oncologist who will fight with you. Don't even think about paying for your own treatment because a good oncologist will do all s/he can to get you the drug or treatment you need either on a trial or thru' the NHS. Avastin isn't the wonder drug it's said to be - there are all sorts of problems with its treatment. There are other treatments and other trials, not all of them advertised on the internet.

    I know what you're going through. I had stage 3c with grade 3 cells, and despite having a good response to chemo I was left with a surgeon and an oncologist who refused to give me a long term prognosis and said things like: 'you're well now. Don't think about the future...'

    So I went elsewhere and found a different oncologist. I feel that his confident and fighting attitude has been critical to my survival so far and I no longer worry nearly as much as I used to. To me oncology is complex and mysterious - because I know I have expert help I no longer spend hours on the internet researching treatment and feeling hurt and frustrated because I hadn't been offered this or that.

    However I do take a number of supplements that are said to boost the immune system etc. - I asked my oncologist and also a doctor specialising in holistic cancer care. My oncologist is sceptical - I take nothing against medical advice - but I think the fact that I do something helps me to be positive.

    With two boys, your life must be very busy as it is. Call around and get some good information then take it from there.

    Take care, Chrissie.

  • Dear Chrissie

    Thank you! I would like to give everyone who responded a big hug. I wandered from room to room crying yesterday but in between times made decisions. I have asked my GP to refer me and feel much better for it. I don't want to be an amateur oncologist either. It isn't my hobby of choice so I would rather leave it to someone I have confidence in. I have got to use all my energy in other directions.

    I would be interested to know what supplements you take. I make myself drink green tea and eat chunks of ginger everyday - both of which I hate! But it makes me feel like I am doing something.

    Thank goodness for this website!

    Love Sarah

  • Hi Sarah,

    You mustn't feel despondent. I am into my 5th year of fighting stage 111C, have been on chemo for over 3 and 1/2 years without a break. I live in Spain so can't comment on the access of drugs to the UK, but I know trials have just started at The Royal Marsden in London using Avastin with another drug. Where you live I have no idea, I am sorry.

    I am fortunate to have been on Avastin plus another chemo drug since Jan 2009 and prior to this I was given months to live. Avastin is available in the UK I believe, but you have to go to your health authority for funding and also have an Oncologist who doesn't give you all the bull about the so called side effects, so that they won't use it. Cost is the real reason not side effects !!

    Below is a list of clinical trails, I think I got them off this site, I can't remember. Hope they will be use to you. Please don't ever give up, positivity is part of the fight, a huge part of it. When I worry my Oncologist always tells me there are still plenty of drugs out there for me to try and I am now on my 10th different combination of chemotherapies, so there is hope!!

    Anna x

    Clinical trials

    This is a list of current clinical trials that may be of interest to women with ovarian cancer.

    To learn more about the trials, click on the link to be taken to the trial page. If you would like to discuss any aspect of clinical trials in general, please call us on 0845 371 0554 to speak to a nurse.

    DNA Methylation

    A trial to see if cell changes can help tell doctors who will respond to chemotherapy for ovarian cancer.

    NEO-Escape

    A trial to see if giving Paclitaxel and Carboplatin in a new way as well as including a drug called Gemcitabine makes a difference.

    ICON6

    A trial to see if whether adding a new drug Cediranib to standard treatment is beneficial in patients where the disease has returned more than 6 months after the intial treatment.

    Ca125 doubling

    A trial to see if Ca125 blood test is a reliable way to measure if treatment has been working and to see if Tamoxifen is useful in patients where the cancer has returned.

    HOT11

    This is a trial to see if giving oxygen therapy in a special way (hyperbaric) can help people who have suffered from long term side effects from radiotherapy damage to the pelvis.

    AG-014699

    A trial looking at a new drug for breast and ovarian cancer, in people with BRCA gene faults.

    Gem-TIP

    This trial is to find out more about giving the chemotherapy drugs gemcitabine (Gemzar), paclitaxel (Taxol), ifosfamide and cisplatin for advanced germ cell cancer that has come back (relapsed).

    mEOC

    This trial is comparing 2 different chemotherapy combinations with or without bevacizumab (Avastin) for a rare type of ovarian cancer called mucinous epithelial ovarian cancer.

    Brivanib

    This trial is looking at a drug called brivanib to see if it helps people with advanced cancer.

    SaPPrOC

    A study looking at Paclitaxel with or without Saracatinib for ovarian, fallopian tube or primary peritoneal cancer that has come back.

    ICON8

    A trial looking at weekly chemotherapy for ovarian cancer

    NKTR-102

    A trial of NKTR-102 for advanced ovarian cancer that is resistant to platinum drugs

    Biomarkers

    A study looking at using biomarkers to help doctors choose suitable treatment for women with ovarian or womb cancer

  • Anna

    You are a marvel. I get the feeling that what you don't know about this whole horrible business isn't worth knowing. ~Thank you for going to the trouble of helping everyone else. You should be enjoying some lovely early autumn spanish sunshine instead.

    As I have explained to the others I asked my GP to refer me to the Royal Marsden yesterday. He agreed that the local hospital had probably done all they could. I feel a lot more positive in the knowledge that I am doing all I can to help myself rather than just sitting here hoping someone else will sort things out for me.

    I really admire your stamina in having chemo for such a long period. Apart from anything else you must be mentally v strong.

    Your support has been invaluable to me. Thank you,

    Sarah

  • I echo all the above Sarah - I would just add, push to get to the RM - they are marvellous and will give you the support and confidence that you will get through this rotten experience. I would just add, keep checking that the referral has been SENT from your GP and RECEIVED at the hospital. Keep fighting.

  • Hello Lill

    YES!! I asked to be referred to the RM yesterday. My husband went round to the GP's house with all the details yesterday evening. Now I feel like I've got more fight in me I will keep on top of the referral.

    Thank you!

  • Well done - I am sure you will feel completely differently once you are being treated at the RM. All the best.

  • Hi Everyone, I am just so pleased I could help. I feel we should all share the knowledge that we have about ovarian cancer. Good luck to all of you transferred to the RM, it really is the best in the UK.

    I have just gone through a gruelling 12 hour day, hospital at 8am for bloods, Onc. appointment delayed as Spanish holidays still ongoing. A stand in Onc who hadn't got a clue what he was doing and as I have to drive the 3 hours round trip to hossie, as my hubby is almost blind, I was telling him not to put too much antihistamine in with the chemo. Anyway, I survived and I am home + 2 huge bruises due to incompetent nurses with needles. I mustn't moan, I get the treatment and that is the main thing.

    It is so right Sarah, you have to be proactive, I am lucky my Oncologist is a research scientist and started the Avastin trials in Spain, he loves it when I take in details of new drugs and trials. I am very lucky to have such a wonderful man. He is also behind me 100% willing me on to live, well after all I am good for his statics aren't I !!

    Still wonderful weather here 27.5c at 6pm, that's why we live here, oh and the medical care is great too.

    Anna xx

  • Hi Anna

    I hope you are having a really relaxing day after what you went through yesterday. I can't believe you have chemo and then drive yourself home - you are tough! soak up some sunshine for the rest of us.

    Can't get to see the onc of my choice at the RM for another 2 weeks - I simply can't wait any longer so I am seeing someone else instead. Nothing is ever straightforward.

    Sarah

  • Hi Sarah,

    Do I take it you are seeing someone else at the RM ? If so not too bad as at least is the same oncology team.

    Resting you have to be joking. Soaking up the sun, no way. I never go in the sun ,come out in a rash with the chemo, so I have to cover up.

    I am shortly to have a reiki treatment and then a short siesta.

    Keep me posted please.

    Anna x

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