Round 3 its back!!!!

Hello everyone,

I hav'nt been blogging for a while as i have been just so overwhelmed by this all.i had 2nd line chemo starting in dec 2011 plaxital and gemcetobine. I was extreamely poorly with low blood counts, liver function problems etc they stopped my treatment after 5 cycles. My ca125 went down to 20 and life started to go back to normal - i went to work et a couple of weeks ago i started having pains and a bloating feeling.my gp did a ca125 test and it has come back 2200. I am devestated as i so prayed that there would be a bigger v

Gap this time. My specialist nurse had said that she is concerned it has come back so quickly only after 4 months. I am 43 and have been suffering for 2 years i need a few more years to sort out my kids etc.my options are getting very limited.

..

i know many of you have been dealing with this disease without respite for a number of years. I am scared of the fact that it has made me an invalid and the words quality of life keeps coming to mind. My family want me to keep trying understandably but is there anyone out tbere who has refused treatment but is fine and has been controlling it. I know this forum has been a great support for all. I just need some reasurrance that this isnt necessarily the end of the road. Love parvin x

19 Replies

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  • Hi Parvin , I can only imagine how you are feeling at the moment . I have only just finished 1st line treatment so cannot really advice . Like you i have kids and my worry is for them . There are many ladies on this site who are on 4th and 5th line and are still coping after a few years . I know this is not the life we wanted ( a million miles away in fact) . I cant imagine myself saying no to treatment as feel would take everything going as long i was still here for my kids . Please do not give up yet i know it is so hard

    Ally

  • Hi Parvin,

    Just to say I am so sorry with what you are going through....you will get a lot of support on this site...I can only endorse what Ally have said and try not to give up..love x G x

  • Dear Parvin

    This is such a difficult time for you. I wonder if you can get a second opinion such as the Royal Marsden. There are so many new drugs on trial at the moment.

    I'm so sorry you feel so bad at the moment. You mention the views of your family. The only views that count are your own. You're the one who has to deal with all of this and you're the only person who can judge - after reasonable consultation - what is the best route for you.

    I've been lucky and haven't had any bad symptoms at all through my cancer journey. I do know that I would reconsider every option if I was to consider my quality of life was compromised.

    It's a bit difficult to help on this one blog. If you feel you can keep blogging perhaps we can be of more support and help to you.

    with loads of love xxx Annie

  • Thank you ladies for your lovely comments. Although i dont blog often i follow everyone else. I have always felt that i didnt have much to say. My friends are saying much the same that it is my decision. It is just hard when you are constantly moarning for the life that was. My daughter has suggested that i look at my life in a new way and put my energies into keeping myself well. Thats so Difficult when you are faced with chemo cinstantly. I have began to hste it with a vengence. I am in such a turmoil more so than when it came back last time. I will also have to look at giving up work as i cannot keep

    Going on the sick every few months. I started to follow jane plants programme but feel that it may be too little too late. It is so hard as you dont want it to consume you but i feel i just want to curl up and give up

  • Dear Parvin, It's good you have started to blog and share your feelings. You have a lot to say. There are times when we feel angry, frightened and lost and here we're amongst friends who really understand. One of the things I have come to resent is being told, 'You're strong', 'take one day at a time' by people who are fit and well and haven't a clue about what it really feels like in the dead of night when you can't sleep thinking about it all. Sometimes I want to shout at those people but I listen humbly as their comments are well-meant.

    Here at least you know that when people get back to you if you're feeling down that they really do understand what's going on. If you're going to give up work you might want to think about having time to yourself. Some relaxing therapies such as reflexology or reiki, or a day at one of the cancer help centres. I know of the Penny Brohn Centre in Bristol and I'm sure many others across the country. I haven't been myself but I would seriously consider this if the bad feelings started to overwhelm me and get out of control. I would certainly think of seeking help to turn around negative thoughts as we need to make the most of the time when we're feeling well.

    I hope this helps. We sometimes bare our souls on this site when we wouldn't dream of doing so face-to-face with anyone.

    with lots of love xx Annie

  • Hi Parvin

    Can really understand that feeling of wanting to curl up and give up. The treatments are so tough to get through and you have barely had time to catch your breath since the last one. It sounds like there are so many conflicting thoughts about what to do next running through your mind, and then your family are, as you say, understandably going to want to rally you to fight on.

    Would it be helpful, I wonder, to talk things through with someone outside of the situation - maybe Ruth Payne on the helpline or a MacMillan Nurse? Maybe then you will have a clearer idea of what you want to do next. Wishing you all the best and let us know how you get on.

    Moniquex

  • So sorry you are going through such a tough time. I cannot offer any advise on what you are going through except to agree with the ladies here. It's you that counts parvin and I hope things get better for you. Lots of love Kelly

  • I'm so sorry this is happening to you, but I wouldn't give up yet. Have you been for a second opinion yet? If not, I'd suggest Prof Leidermann at UCH in London. He is very good with treatment resistant disease. Also, there is a complementary cancer clinic at UCL where you can get Mistletoe. A number of women have had very good results with Mistletoe, but you must see a doctor - the expert I'd suggest is Dr Kassab.

    I can well understand your feelings, but you are still young and you haven't yet exhausted the possiblities of treatment. Please call the Ovacome helpline - they are very good and can give you more specific ideas.

    Meanwhile, please be kind to yourself. Do anything you can - watch junk tv, read rubbishy fiction - to take your mind off the cancer.

    Please consider giving treatment another try. I hope and pray that something will work for you.

    Cx

  • PS: I assume you've read the post below yours about the Royal Marsden? If not please read it NOW. The reason I suggested UCL as opposed to the Marsden is that I know that Prof Leidermann is very good with treatment resistant disease and has helped other women in your position. Of course there is no reason not to try both. Take care, Chrissie

  • So sorry to hear your news Parvin, this whole "journey" brings a roller coaster of emotions. As the TV ad's are always telling us "It's good to talk" so try to find out what support you can get locally - especially if you are going to give up work.

    Love and positive thoughts winging your way, Liz X

  • Hi Parvin!

    Like Ally I can only imagine the desperation! My last lot of chemo, cisplatin, made me sick, and tired. I was spending all my time in bed and the tumour was not shrinking, CA125 was rising and so I discussed things with my oncologist. I told him that I would endure the discomforts of chemo if it was being effective but that there is a difference between extending life and postponing death and I am not into the latter. He agreed with me and stopped the chemo. However I was lucky! The tumour was operable and was removed last December! I am in remission at the moment and learning to deal with the resulting colostomy. The difference between us, of course, is age. You are my daughter's age and have more to live for. I just enjoy each day at a time!

    I try not to accept invalid status though the blue badge is useful, I use a walking pole to help me with walking problems andcarry an inflatable cushion to help me to sit. Above all it is two fingers to the OC and, as I am diabetic I am going to ask my GP about Metformin as it is given to type 2 diabetics and has been shown to slow down the growth of cancer cells.

    My thoughts and good wishes are with you!

    Love Margaret!

  • Sorry to hear about what's been happening, it is so horrible I'm on my 3rd lot of chemo and I only started last May, my cancer is resistant high grade and if this treatment doesn't work then they have said no more chemo to even try! I know what you mean about quality of life my second line chemo really made me feel I'll and haven't ever fully recovered from that. It's such a difficult decision, I spoke to a Macmillan councillor who helped a bit so maybe you could do something like that. My fear is what will happen if I stop treatment, will I have a few months feeling ok to enjoy or will I go downhill very quickly? It's all so frightening.

    Whatever you decide it should be for yourself, I know that's difficult when you have family specially as a mum as you never want to leave them.

    Wishing all the best and hoping you get the help you need at this horrible time.

    Love George x

  • Hello Parvin,

    I am just so sorry to read what has been happening to you. It must be very frightening. I haven't refused treatment so I can't really comment on that. The only thing I can say is that I found out that my cancer came back last Spring (2011) and in to my Lymphatic System, too. My Oncologist said I could have no more chemo which really shocked me. He said that quality of life was far more important and the chemo would be too toxic. I then saw another Oncologist who, on looking at a previous scan, saw that it had, in fact, been back in September 2010 . I was very upset that she agreed with my regular Oncologist and said, definitely, no more treatment. I too felt it was the end of the road.

    However,I'm still here and I've been able to do some lovely things that, had I been having Chemo, I couldn't have done. It's so often the chemo which makes us feel so bad - not the cancer.

    Whatever you decide, TRY and keep your spirits up and find something to laugh at every day. My Consultant says that remaining positive makes such a difference to our outcomes. So difficult to do, sometimes, especially as you are so young and have your children you want to see through to grown-up life. I find it helps me to play "happy" music when I'm having a despairing, grey day and gradually it lifts my spirits. I do hope you find a way to get through this in your own way. I find that when I act "upbeat" so I don't upset my husband and family - it often helps me to relly feel that way.

    Do keep blogging and let us know how things are for you.

    With love and many positive good wishes, Solange

  • Hi Parvin

    So sorry that you are in this position. Its a scary time, especially when you have your children, and yourself, so young. Also, when you are in pain, I think it is difficult for one to cope with anything, mental or otherwise, it is so draining.

    My situation is different from yours because I am not in pain, but I have not had chemo for 3 years and my cancer is still growing, albeit very slowly.

    What you are saying though, did make me think of Charon, who blogs on this site. You can search for her in the directory (page 4). She is on a drugs trial at the Marsden with excellent results, but was referred there because she really did not want any more chemo because of the quality of life issue. She takes tablets with little or no side affects. I hope she does not mind me mentioning her.

    Anyway, I think that you should discuss with your doctors (or the ovacome nurses) how against chemo you are and ask for a second opinion to establish what alternatives there are. I have learnt that often, if you don't ask you don't get. There may well be things available to you that, without you asking about them, you won't be offered.

    I do hope that you can find a way to be rid of the pain you are currently in.

    Vx

  • Hi Parvinc

    I'm so sorry to hear what you're going through.

    I've just started 3rd line chemo, my second line chemo finished middle of February so I've had a longer break than you, although I've had symptoms for a couple of months, bloating, pain etc.

    I can only say that I decided at the very beginning that when I felt I'd had enough I would make the decision to have no more treatment because I wouldn't want to go on with more and more chemo continually. I discussed this with my oncologist who told me that they didn't do that - when she felt more treatment would be of no value to me she would advise to have no more chemo. She agreed with me that it's quality and not quantity of life which is the important thing here.

    I'm so sorry I can't be of much help to you but if you feel personally you really cannot go on you must discuss with your doctor what your quality of life will be and approximately how long you would have without treatment. Maybe if you had some answers to this it would help you to come to a decision about your next steps.

    As the others have said try and find yourself some 'me' time - are you in a position to give up work completely so you have more time to rest and spend with your family? Do you have a Maggie's Centre nearby where you could go and speak to a counsellor and maybe some other women who have gone through the same thing and had to make these heartbreaking decisions.?

    Love Cathy xxx

  • Dear Parvin

    My heart goes out to you and I am so sorry you are feeling so ill. What a decision to have to make. I have no words of wisdom. It can only be your decision, but make sure you have covered all options before you say no more chemo. Just wanted to send you love and positive vibes and hope it helps in some way. Chris x x x

  • Hi Parvinc,

    Very sorry to hear how you are feeling at the moment. I do think you should try and

    get an appointment with a Macmillan counsellor-maybe they could give you some

    advice. Please don't give up yet - I know it is very difficult going through the chemo,

    but while there is still something for you to try, maybe you should give it another chance

    for your children.

    Sending you lots of hugs

    Angie xx

  • Hi Parvin

    Don't give up, have faith that there is a treatment out there that will suit you. We are all different and there're so many different combinations of chemo. Why don't you give Ruth a ring on 0845 371 0554. She is a nurse and has been through so many worries with OC. She has a wealth of experience and will give you some support and really good advice. The support line only works 10 to 5 on weekdays, and it's a Bank Holiday on Monday, so do ring her and get some advice about what can be done to help you.

    Remember, you have lots of friends on here, and your children must be so worth fighting this horrible set-back for

    Love Wendy xx

  • Hello Parvin

    What a difficult situation to be in. When you feel so ill it affects the decisions you make. Would giving up work create a bit of space in your life? Hard to do when you need the money, but your family need you more. You might cope better without work to think about.

    Love Christine

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