Everyone has been very supportive but feeling really aggitated just now. Going to doctors. Concerned about bowels hardly working despite senna. Also seeing my Consultant yesterday felt my options had run out. Yet everyone here seems to have had loads of different chemos. If Caelyx doesn't work she said I will have to get in touch with The Christie and see if they have any trials or do I have private health insurance (No). I guess I would have to remortgage the house to get treatment.

18 Replies

  • What about going to the Christie now? Your onc isn't offering much in the way of treatment or hope, yet I know of others who have recurred quickly who eventually find a chemo that works for them.

    There is a regime for platinum resistant cancers - the Rotterdam regime. This has worked very well for some, and the Christie uses it - some hospitals don't because it is so toxic.

    I'm thinking of you and I wish you all the best. Vx

  • Having thoughts at moment. Been to see my Doctor this morning to express my concerns not just with my bowels but my Consultant. She seemed to be taken aback when I said my Consultant asked if we had private medical insurance. I don't know whether to give the Caelyx a shot and see what happens and then if not happy ask for referral to The Christie. My doctor has not received the Consultants report yet so she will ring me when she has and I should also have a copy. Will discuss it then. I don't want to delay any treatment as the tumours seem to be growing rapidly and if I ask for second opinion and referral this could hold things up.

    Thank you for thinking of me Victoria


  • You should be able to get a referral very quickly. Your GP should be able to arrange it. Best, Vx

  • Hello Victoria spoke to Ruth at ovacome and she advises going with the caelyx for the moment and see how it goes as the christie would probably offer this treatment anyway. Then take it from there. She agrees with me that my consultant is not being very supportive so at some point I will probably be asking for a second opinion. She left me without hope and feeling completely flat and when you are facing treatment this is not helpful at all.

  • Try and drink plenty water, eat prunes, milled flaxseed and priobiotic drink that often helps to loosen the bowels. I notice Milk of Magnesia is back on the shelves again in Tesco, sometimes adding hot water to this does the trick. I suppose Ruth is correct really try the Caelyx, it seems to work for some so worth a try, sending you hugs

  • Thanks suzuki. Have replied to you earlier but good luck with your results again.

  • My first onc was like that, completely devoid of any encouragement. 5 years later I'd like to bump into her and screech, 'wooee, I'm a ghost...'.

    I really hope caelyx works for you, but I am sure there are other options. Vx

  • I love your sense of humour but then again we need humour to cope with this stupid illness.

  • I have a very warped sense of humour - sorry its just me - friends are used to it and I guess my new friends will get used to it too.

  • Pat.. What a horrible situation you are in;, but really, is treatment or trials or drugs down to whether a person has private health insurance.

    I can't really comment on availability of drugs/trials in UK, so I know all I can do is to say I am thinking of you.


  • Hi there ..

    First of all, I think you need a proper assessment of how your bowels are working and given a regime which works for you. My bowel has stopped working by itself so I have a prescription for Movicol in the morning and bicycodyl at night. If that doesn't work by Day 2, I add Lactulose. It's a fairly gentle regime as my oncologist recommended a low fibre diet.

    I'm really sorry you find ourself in this position but now you've made up your mind, I think at least you know what you're doing with an option of a second opinion. Xx

  • I can't believe the help some people are getting. When I mention my bowels my Consultant says use a laxative but this doesn't always work. I have been juggling round myself with things without any proper assessment. It just feels so unfair at moment. My husband rang my oncology nurse yesterday and received a recorded message saying she would not be able to reply to messages for months. I don't know what is going on. Not keen on using too much Movicol as it gives me terrible heartburn but there again that was when I was on chemo. Got something called Manevac which seems to have got things moving but shall also take Lactulose. But like I said I am juggling things alone.

  • Rubbish about the message. I was thinking your GP may help with a local assessment and then refer you if things don't settle. X

  • All the advice you get on this forum is amazing and I really don't know what I would have done without it. Feeling very let down by everyone else.

  • Hi, I started having problems with my bowel four months ago due to the cancer. My doctors at the RM suggested I try a low fibre diet alongside taking senna and ducosate every evening. They referred me to a dietician at the RM and she gave me a low fibre diet sheet (which excludes virtually all fruit and veg, wholegrains, nuts etc). This regime has worked very well for me so far. I am amazed how well I still feel without my '5 a day' but I do miss a plate of salad or veg with my Sunday dinner! If your doctor recommends a low fibre diet (if it is suitable for you) I am happy to send you a copy of the diet sheet.

    best wishes


  • Thank you for advice Sharon, duly noted. Feeling better today - panic over on that one for moment.

  • Hi Taichipat,

    So sorry your oncologist has run out of compassion . Maybe he/she needs a long holiday. I would get a referral going as you need a doctor that gives you support. I read of someone else who did this and found the new oncologist had a different attitude altogether. Hope you get this sorted soon.

    Wishing you well

    Aemi x

  • Caelyx treatment being brought forward by a week as having bleeding. So referral on hold for moment.

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