How much?

After 4 lines of chemo abd two surgeries my ca 125 is shooting up again, just less than 12 months after last treatment. My onc and I agree no further chemo - this is the last stretch. But she wants me to take further non intraveinous treatment to extend my time. I am not sure I should - isnt it just postponing the inevitable? I am 64 and still working busily as a writer academic but I'm tired.

17 Replies

  • Wow, Snam, that's the 64 million dollar question! I think it's one every single person will face at some time and what we decide will depend on many things. For me the most important is quality of life. I know when the day comes that I can't find pleasure or happiness and I'm too tired to do anything is the day I shall feel it's just not worth taking additional drugs to eek out a few more weeks of life.

    Are you still getting enjoyment from your academic writing even though you feel so exhausted? That must be such an interesting occupation.

    xxx Annie

  • Thanks Annie! Yes I still get a lot of pleasure of life and still deal with pain without drugs. I'm active and busy. Ibut that said, the idea of another long battle is so depressing. Of course I don't let that on to the people around me.... :)

  • That's what's so good about making friends here and developing relationships with people who understand and who are equally likely to be putting on a brave face for their nearest and dearest.

    I'm just about to start a third line of chemotherapy. The last one took its toll and I'm less mobile and tire more easily these days so I know I won't have the resilience I had for the two previous treatments. I'm not depressed about it yet but I'm sure that time will come.

    I like the idea of research and writing. It's something we can enjoy long after our bodies cry, 'Enough enough'! xxx

  • Hello Ladies. I was discussing this issue with a friend at lunch today - when do we say or decide "no more". Annie you said it, that our resilience is weaker each time, and this is true in my case. Physically, it takes more out of me, but the reality is that, I can still get out each day (except for a very unusual day) and enjoy things. Of course, I can't do them as fast as before - but I do enjoy them.

    However, we all have to make our own decisions - and this decision will always be the correct one for us.

    So, Snam, I just wanted to tell you - make the decision that is best for you. Sending you best wishes. Daisies

  • Hi Snam

    My mum had the decision taken away from her. Her onc said 'no more chemo'. Best decision as mum was so poorly with chemo.

    She hasn't had chemo since July and is getting stronger each day. As yet (touch wood) she has no pain and we're looking forward to Xmas together.

    Whatever decision you make, you do for you. It's your body. Whatever decision you make. Good luck m

    Alison xoxox

  • Hi Snam

    I was dwelling on this last week as I was in hospital for a week starting my latest trial drug (fourth trial drug after four standard chemo regimes) and trying to decide at what stage do I say enough and give up working, call in the life insurance and just spend time with my family and friends. When it came to actually saying it out loud I just couldn't do it. I felt I just wasn't yet ready and all the time that there is a chance that this latest drug might keep me going a bit longer I realised that's what I wanted. Also I feel that I am helping to trial drugs that may help patients in the future even if they do not directly benefit me.

    I don't know how you feel about clinical trials but it could be something you may want to consider. However I agree with all the other comments on here. Make the decision that is the best for you.

    Best wishes


  • Hi Snam, as the other ladies have said its your body and only you will know. On the positives though, you are still managing to do the job you love, you are not having to take pain relief, you did get almost 12 months progression free time after 4th chemo regime (I only got 8 after 1st) .

    You say you are just postponing the inevitable, but you know we all have to die someday, whether we have OC or not. I truly believe the Lord has a plan for us and he will take us when he is ready. This was reinforced in me after Linda Bellinghams death. She planned to stop her chemo in November as she was planning on one last Christmas with her family. It didn't happen that way, she was taken just a couple of weeks after revealing her plans.

    Perhaps a little holiday would help with the tiredness, you know what they say, a change is as good as a rest!

    I am waiting for scan to determine we hen 2nd line chemo will start. I hope and pray I will get longer remission than with 1st line. Be strong. Hugs. Ann xo

  • Anne, Some ladies on here have had longer remissions 2nd line so you can too. Like your positive message to Snam, try so focus that natural positivity on yourself, know you can. Learnt this on some sales management course at work. Henry Ford quote " if you think you can, you usually can, if you think you can't you are probably right" in other words the power of positive thinking.

    Karen xx

  • Thanks Karen. I did readvabout one kady on here who got much longer with 2nd line treatment than she did withbher first.

    Love that quote. I am really trying to be positive, I have such a lot to live for and my eldest daughter has delighted us with the news that she is pregnant . early days yet for her as she is just 10 weeks today but I am so delighted.

    My husband plays for a couple of bands, one brass and one concert and they are both going to Spain next year and I intend to go too. Positive thinking all the way. We are going to be masters of positive thinking, perhaps we need to write a book about it lol. Hope you are well. Ann xo

  • Hi Ann, I got much longer after second line chemo than after first line - it really does happen

  • Thank you Adele. Xo

  • Hi it is one of the biggest decisions all of us will probably face at some point unless events God or fate steps in . It is amazing how your outlook changes when we are in this situation . Before I was unwell I used to say I would choose quality over quantity but now I'm not so sure . It was funny when I was first diagnosed I never thought what if this chemo never worked for some reason I had this inner feeling then wasn't my time. Now I just look at my 18 year old daughter who tells me I need to be ok as a girl needs her Mum and my 17 year old son and commit myself to having as many rounds of chemo as my body can take for their sake . Thankfully I'm doing ok just now . On Avastin however recent scan showed some issues so re scan again Jan.

    whatever you decide it needs to be the right one for you. Glad you are still enjoying your writing and sending you lots love

    Ally xx

  • Hi Snam, well if you are coping with your normal work without too much pain, I would take a holiday and come back refreshed. I agree with Daisies that every regime takes its toll on the body but our bodies do bounce back to a degree maybe not fully but then again we are all older than we were at the start of the journey so we must also factor this in. It is a hard one and one I will also have to make at some stage, this is the depressing side of cancer. Some days during treatment, I have said to myself when I am weary, no more but I still turn up for treatment just the same. I am just on Avastin at the moment so to sort my thinking cap out, I went and spoke to a counsellor at a local cancer support house. So maybe that could be an option for you. You do get sick of the whole thing, and I am told that is a natural reaction to a long term illness, the idea then is to focus on doing something good for you and try and change your thinking. Whatever you decide is right for you, and wishing you the best

  • Like others, I think a break/holiday is a good idea. There are less toxic treatments that can help some women. Tamoxifen and letrozole (spelling?), hormone blockers, can help, but they do have side effects. You could also ask about metformin, a drug used to treat diabetes that can have the effect of slowing ovarian cancer. Beta blockers to reduce stress is another option, although the one small study has, so far as I know, not reported yet (MD Anderson Cancer Center, Houston, Tx). Then there are anti-inflammatories and aspirin - if you use the search function you will find some informative posts by the member drdu, who is a doctor. None of these are a cure, but they might slow the progress of the disease and give you some good quality time. It sounds like you are tired and down - who wouldn't be? My work is similar, and it can be stressful. Please be very kind to yourself. The most important consideration at the moment is you. Best wishes, Vx

  • Hi Sham

    I am 75 and have had two rounds of palliative chemo over the last year. The taxol just made me tired but the caelyx gave me very unpleasant side effects and we stopped ot before the last cycle by mutual agreement because I was in hospital with septicaemia. I have oxygen, which I am weaninguselg off, to help with the tiredness and I will decide on the next lot if it becomes necessary based on likely side effects. I control pain with paracetemol and ibuprofen with an occasional codeine, take a single metaclopramide each morning and make decisions about what I use my energy pn according to my priorities! I pay spmeone to clean and iron

    And look after my pots and window boxes so I can read, i use a kindle because my hands ae not ip to holding a book and turning pages. I drive, go to the theatre, cook and eat out and see friend. I am a spokes person for Dignity in Dying but it is not time to go yet!

    It is the likely unpleasantness of any chemo that will help me to decide!


  • Thak you all so much for your comments! Very supportive. I guess I am more depressive than stressed, and just want everything to go away. But you are all inspiring, so thanks again.

  • Hi snam. I stopped treatment in September after two rounds of cisplatin which were foul and did not want to spend the next four months depressed and feeling so bad that I couldn't get off the couch. It was my last option and would have been my sixth line chemo. I am still feeling well and "happy" which has been the greatest thing about the decision. They offered me oral again etc but it stopped working last time so didn't see the point. My family and friends are on board and understand that it's about me now. I have always been positive and kept my sense of humour and when I briefly lost that I knew it was time. All the best with your writing and I am sure you will make the right decision for you.

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