Back from seeing Consultant

I guess I need some support this afternoon. I knew this was going to be my first reocurrence because of the symptoms i had been getting but although I felt I was geared up for the results. I don't think you are as prepared as you think you are. Its back after not quite 3 months (is that a record?). Tumours at 6cms which is more than I started off with in May CA125 3,000. Was hoping to have some quality time and maybe a holiday but shall be going on Caelyx from 8th April so not much chance of anything now. Booked walking day, gardening club outings all will have to be cancelled. Feel down as I know Caelyx makes you very very tired. Missed last summer and now going to miss another one. Consultant said there was only a 20 percent chance of it working and after that she thought trials would be my best option at the Christie but I don't know if I would be eligible even. Other drugs she didn't think would be useful. Have I got a cat in hell's chance of keeping this at bay and having some time? at the moment I feel I haven't.

12 Replies

  • Hi Pat, I'm on Caelyx/Carbo for 3rd line. had 2 so far. Not too tired really and still active. Everyone gets side effects differently so don't assume that it will effect you too badly. Where are your tumours? Don't give up, Caelyx may work brilliantly for you. Every cancer is individual and your response to a drug may be exceptional. Hugs to you. Lovis x

  • Thank you for your prompt reply. Just hope it works and not too tired or too many side effects. Only just got back into getting fit again after first treatment and operation. Tumours in same area but not spread to bowel or other organs. One on diaphram growing

  • Pat. So sorry to read the result from your trip to the consultant. Was never on Caelyx so can't comment on side effects or how you will be when on the drug.

    Life with O/C is horrible, as we don't know what is around the corner, or indeed how anyone of us will do on any drug/regime.

    so all I can do is send you best wishes and to say I will be thinking of you on April 8th. so while a lot of your trips may not take place this summer - you may still get days out with family and friends and laugh.

    Love & Hugs, Daisies

  • Thank you for your wishes. Just feeling sorry for myself, wanted more than the days out I have had for past year and further summer to come

  • So sorry treatment didnt work very well but look this one could be the one, try and stay positive. I know a lady on treatment for four years and then suddenly she got a break as went stable for a year or more. So you never know and sometimes we do tend to surpise the medics, sending you hugs

  • Hi Pat, I'm so sorry you got such a short break. My mother had caelyx and it wasn't too exhausting. Her most troublesome side effects were mouth ulcers and sore hands, so she only had 3 sessions (second line chemo) but she got a very good 6 month break from those 3 sessions. And she had no real break between first and second line. I hope caelyx is a very successful treatment for you. From our experience just be very careful with oral hygiene (magic mouthwash and things like that) and moisturise hands and feet as often as you can from the start. As the others said, no one knows what drug might be the perfect fit for them, so take it one day at a time, and keep going as best you can. Wishing you all the best. No one can be sure whats coming, so you might as well think good thoughts. I read somewhere recently, "Both faith and fear require us to believe in something we can't see. You choose. " X

  • Hi Pat, i'm on 6th line chemo now after Being diagnosed 11 years ago. I'm now on caelyx and carbo and although had bad sickness for a couple of days in first week after chemo I've felt pretty well and not too tired since. I've managed to get to my aerobics and had pretty normal second week. I was also dreading this drug but it hasn't been as bad as I thought. I hope that's the same for you and that you can have plenty of good days

    Love Francesca x

  • Hi Pat. Sorry your fears were confirmed by consultant. I can't help re that treatment as haven't had that combo but you've had some encouraging replies so don't give up. Big hugs. Ann xo

  • Iv had six Caelyx second line Clemo . I don't find it a problem and could have gone on holiday anytime. Going for a scan in around six weeks got a midway scan number three it was good , my tummy is still swollen which is a thought . Mouth and teeth good bit of redness on my feet otherwise bran new . Don't worry too much . Sending you a healing thought xcannie

  • Hi. I hope you manage to feel more positive. My cancer never went away so I went onto caelyx June 2013 pretty soon after finishing the carboplatin and taxol. I got a sore mouth mid cycle and tired at times, but I still managed to fit in a lot of living and doing in between the treatments. I even continued to work a bit. I seem to remember treatment was every 4 weeks so you could almost forget about hospitals sometimes.

    All the best


  • Hi Do not despair. I had Caelyx as second line chemo back in 2010 and managed to do things in between treatment. Five years on and my cancer keeps recurring and I have had various surgeries and treatments including four clinical trials - see my profile for details. I have managed to work and go on holidays etc especially whilst on the trials as they have not been so debilitating as traditional chemo.

    Good luck for your treatment


  • Hello Sharon I can't believe just have much you have been through. I am a very positive person so I hope I can show as much strength of character as yourself for the journey ahead of me.

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