Round 2 starts tomorrow

what a rollercoaster the last two months have been, scan came back clear in October however ca125 continued to rise and 2 weeks ago I ended up back on hospital to get 6 litres of fluid drained. When I was admitted I was told my liver was enlarged and my lft's were all over the place and I had a uti. Fluid was sent off for cytology and the 3 days after being discharged I was called to come in and see my onc. Was given the dreaded news that I would have to start 2nd line chemo, carboplatin and gemcitibine.

I was due to have chemo yesterday but postponed it til tomorrow. I am not sure if I am in denial but have been very anxious as I have been having a hard time getting answers from the hospital. It's been very frustrating. The whole week I have been waiting for people to call me back but no joy. Today I finally have an appointment with my onc. Am I being silly? I want to know where my recurrence is before I pump my body with chemo, I want to know what the cytology results are, I want to know why I have not had a scan. I was told a couple of months ago that they would not start chemo if just my ca125 was rising but here I am being told to start again just cos I had ascites, I am worried that they are following hospital protocol and not investigating anything else before pumping my body with chemo drugs. I am frightened and having a very hard time dealing with the fact that it's come back. My onc has told me that as i only finished first line chemo in April my remission will more than likely be shorter this time round, I am scared that this is going to be the rest of my life. Everyone who has posted on this fantastic website has been my lifeline over the last year and a half, it seems to be the only place I get answers and feel you all know what I am going through. I would love to hear from anyone who has had multiple recurrences and how long the gaps between treatment were. Would love to hear from anyone who has had carboplatin and gemcitibine and what their experiences were and do you lose your hair with this combo. I would just like someone to tell me that I am not going mad and it is normal to ask the questions I will be asking my onc.

Wishing you all a healthy new year and a wonderful Christmas and a huge thank you to each and everyone of you, so sorry I have rambled but I feel so much better for having gotten things off my chest

Best wishes

Shabila

3 Replies

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  • Dear Shabila,

    For what it's worth; I think you are very wise to ask these questions. The fact is; you are more likely to get answers from this forum than from the hospital because ovarian cancer is not well understood. If you are worried about the chemo ( as I would be) insist on being given answers before you embark upon it. Remember you have to give INFORMED consent to treatment; and you cannot do that without the information!

    Hopefully the oncologist will answer these for you today - but don't be fobbed off. My oncologist was always quite scathing and bad tempered about my questioning his decisions on treatment, and refusing some; but now he admits that I have a right to an input; that he doesn't know everything there is to know about my condition and even that perhaps some of what I do to 'treat' myself works!

    Every good wish for your interview today; and for your future treatment. I'm convinced that for any treatment to be fully effective, the patient has to feel confidence in it.

    Very best wishes,

    Isadora.

  • Hi Shabila,

    What type of scan did you have in October? Also how they know that your liver is enlarged without a scan? What is your CA125? Is it doubling every 4 weeks?

    I finished my first line chemo in October with a rising CA125. A CT scan looked clear on 4th October, but they then did an MRI scan on 27th October because the CA125 is pretty reliable IMHO and they know it. Initially my onc thought it looked OK, but with a group of them crowding round at a MDT meeting a gynae specialist thought he could see something under my diaphragm above my liver. So to be sure I have just had a PET scan and the results were sent to my onc on Tuesday. At the moment I am a little sore a few inches above my belly button and I get back ache by the end of the day. My CA125 is doubling every 4 weeks and is now up to 481. I am expecting to start second line in January which sounds about right for me. I was a basket case when it was 1600, so next month it will be 800 and we will try controlling it before it goes up to 1600 in Feb. And if we don't, then I guess my numbers up very soon.

    I guess I am thinking a scan is a must for them to measure how you are responding, but I know scans are a pretty blunt tool and not that great. I would ask about an MRI or PET scan though.

    I am afraid after no remission from first line, I am expecting just a month off here and there for the rest of my life. It does seem we are all different, some people have very long maybe total remissions, and some have no remission (like me) and others (like you perhaps) are somewhere in betweeen.

    Love Lizzie

    X

  • dear Shabila,

    sorry i havnt replied earlier - computer broke down. your situation is very similar to mine. i was diagnosed June 2010 had 6 lots of chemo - carbo-plaxitol then surgery in Jan 2011 two more carboplatin -finished treatment March 2011 - was fine till Oct 2011 when they found enlarged aortal lymph node. They scanned on 28th Nov and found progressive disease in my abdomen. I started 2nd line chemo of carbogem on 16th December. this chemo does not seem as harsh as the 1st one but i dont know how effective it will be only time will tell. I was very upset at the begining as i had just got back working etc. and suddenly life was hospitals, needles and sickness again. but what can we do - this site helps me to put my situation in perspective - there are so many of us in this and worse situations - we need to just take each day at a time. please follow the advice alot of the ladies are giving on good diet etc as this makes you healthier to fight the disease - take care and keep me updated on how you get on xx

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