I need a direction to the rest of my life journey …

I am not sure if I know which way to go: should I continue the rest of my journey without Chemo or go back to the forth line:

Advance stage (4) OC and tumor nodules all over the abdomen and one year of different type of chemo without any positive response. Currently the general goal of therapy is palliation, unfortunately, there is no reasonable hope for cure at this point and the doctors decided I am not operatable at all. 5 weeks and when I stopped the chemo to take break due to severe side effects, malignant ascites developed swollen legs and 4 letters were drained from my abdomen. The question I am facing right now, should I go back to chemo (4th line) and the objective is only under palliative care which confuse the hill out of me….to me palliation therapy is to control and help relieve symptoms such as pain, …etc. if I go back to chemo, it will bring with it some painful side effects and the results is still questionable? Your advice please to which direction should I take (the doctors is not helping much to which direction should I take?)

Best wishes

20 Replies

oldestnewest
  • What a dilemma for you,am so sorry you are suffering so.

    Difficult to know what to advise you, but I think if it were me, would consider what is the best treatment for my body, what will give me the most relief and pain free time.

    Thinking of you at this difficult time and sending you much love.JO

  • Thanks Jackie for your positive feedback ....

    to all: does chemotherapy is used to manage ascites? any feed back ?

  • I had to have ascites removed 7 times from lungs and stomach area, then all of a sudden, for no reason, they eased. It has now been 11 months since anything there. There is still some evidence of them around my lung, but not changing. I was on Taxol and 6 other chemos for years, just keeping me alive, now am down to just a estrogen suppressing pill. That pill alone has done wonders. Drs. don't know why the turn around...miracles happen every day with Cancer. I was late stage like you, but am now in my 11th year, still with Cancer, but living a good life. I guess, I'm saying to never give up. I have no right to tell anyone what to do, but I never ever believed I could die. I treated cancer as if it were just one of the 99 problems in my life, and the other 98 needed my attention. God bless you---give him the cancer problem and take care of your life.

  • Hi there

    Sorry that to read that you are having to make this awful decision. But only you can decide what's best for you

    The onc told mum back in August no more chemo as her body was too weak to handle it. At the time she was bed bound and hadn't been out of the house in weeks if not months.

    To me, when they say no more chemo they are sending you home to die but mum has fought and fought and now she can get out and about and getting 'stronger' without chemo. I don't know how long this will last for but she's having a quality of life not quantity.

    She feels so much better without chemo

    (Just so you know she was diagnosed with OC 3c. Numerous lines of chemo and 2 ops and nothing cleared the disease).

    So what I'm saying to you is - this is your journey and you decide your path

    Thinking of you xxxx

  • I'm so sorry to hear about your condition. If I'm allowed to give one advice, it's don't give up. Being on different OC groups, I've seen cases like yours, that became manageable. Inspire has several platinum non sensitive stage 4 memebers that had hard time finding right drugs for them. But they are living proof it's not impossible. Clinical trials and an oncologist that thinks out of the box may be of great help. Here's only one link to the thread were a member ( jt25741, battling stage 4 for four years) shares what drugs she did (with success) :

    inspire.com/groups/ovarian-...

    There are others that would be happy to share their knowledge with you, I'm sure.

    For palliative care discussion, here's a great thread on a different group:

    smartpatients.com/forums/1-...

    Wish you all the best

  • Hi, I agree, don't give up, read and read and as Nieman says read the American site Inspire, very interesting articles on there. Maybe change oncologist and hospital if possible for a second opinion? Good luck, Trix

  • So sorry to read this. I too was dismayed when, after surgery and 6 mo. chemo I was told any further treatment was palliative. Was told that as cancer had not responded to 1st line chemo, it meant it would always return. Three years on I have just started on a different drug (Caelyx/~Doxorubin) with Carboplatin having had dreadful side effects ib just one dose of Taxol/Carbo. I insisted on a break from any more chemo which turned into 9 months (but I did have a bowel resection in that time) and now have had 2 doses of the new chemo with only nausea/tiredness.

    Perhaps have a month or three break from chemo to let your body build up. It certainly helped me. Good luck.

  • Dear Eyman1

    I can't begin to tell you how much I appreciated your sharing of thoughts. I'm going into 3rd line chemotherapy at some time soon and have been thinking I should be laying down advance thoughts and plans. By doing this I can compare how I feel at another point along the journey and it might help put everything into perspective.

    I've been looking through NHS Choices website: nhs.uk/Planners/end-of-life... There are 3 tabs to browse here.

    Another blog yesterday prompted me to listen to the Reith Lecture on Catch Up radio. You might find it helpful. I certainly did. Dr Atul Gawande says the medical profession aren't good at supporting patients with this sort of advance planning but he demonstrates what a helpful process it is. He would certainly endorse your thoughts and encourage you to think about this in a positive way. His lecture can be accessed at:

    bbc.co.uk/programmes/articl...

    I hope you find these links helpful. I can imagine this sort of thread may well be distressing to some so it might be worth setting up a small PM group for anyone interested in talking and sharing on this topic.

    Annie

  • Annie thank you for drawing attention to that Reith lecture. It was a very thoughtful and insightful piece and something I think I needed. As I said elswhere here, it is easy for me to say, to my mam or to any of the ladies here " try another treatment", and it is not as simple as that. I'm very glad I read it.

  • Dear Marymarcy, There is some talk about setting up a PM group to chat about these things. It's nearly four years since my diagnosis of an incurable cancer and I've lived well, very well, but the time has come for a different train of thought and it would be so helpful to share these experiences these with women, and their supporters, going through that situation. I'm sure a PM group will be set up - not to exclude anyone - but being sensitive to what people generally want from a support forum. xxx Annie

  • Yes I think a PM group would be a very good idea, a great support for anyone who has reached a point where they have to have a new conversation, to be able to speak freely. Hope you are doing ok Annie xxx

  • I think, especially because of your ascites, that you should try another chemo. It might well work, or at least stabilise the disease. Is there any way you could get Avastin? Apparently it can be very effective at dealing with ascites. Best, Vxxx

  • Thank you all for all the feedback. This is my plan: currently I am so tired and my body is so weak and can't handle any farther chemo. In addition I was in the hospital for the last few days to drain the ascites. I am going to monitor the coming 2 to 3 months if my body allow me I might consider a 4 line chemo otherwise pain free and quilty of life is my goal. Thanks again.

  • You must do what is best for you. Give your body a rest for the moment and build up your strength and you will find your fighting spirit will return in time. I never had ascites but it is very uncomfy, maybe this will give you relief and energy. I wish you well and let us know how you are doing

  • I can identify with where you are, I am at the same point in my journey. I have been on chemo pretty much since diagnosis Stage 4 in April 2013, with platinum resistant disease, apart from breaks for surgery and recovery. On the whole 2nd & 3rd line chemos (Caeylx, then Topotecan) treated me well and I enjoyed a fantastic spring, summer and autumn. But my disease progressed at interim scan whilst on Caelyx. Interim scan for Topotecan in Sept indicated for the first time, stable disease. My life was wonderful, I was set for continuing Topotecan with another scan just before Christmas, with report available in the New Year. A wonderful family Christmas is planned, and all looked clear sailing. Assess again in the New Year. Then end of October after a fantastic weekend, theatre, National Trust visit, gardening, I started vomiting and couldn't stop. I ended up in hospital for 4 weeks with a bowel bypass (gastrojeujeunoscopy) and 4 weeks recovery in hospital. I had felt so well that I could not imagine this sudden event that caused another twist in the journey. A tumour that had not been seen on the earlier scan had wrapped itself around my small colon and caused a blockage. The tumour could not be removed as it is in the mesentry. I know that I have disease in my peritoneal and another tumour on my bowel that the surgeon who did my radical debulking told me about. My surgery in January 2014 was described as palliative. I have just returned from another 4 days in hospital after 2 weeks at home, again vomiting had to be stopped. Now knowing that this can go breaking bad as a sudden event has really caused me a loss of confidence and resilience.

    However, I have been in discussion with my nurse specialist from the local hospice about advance care planning, and I have involved my family too. This nurse specialist is now my friend. She came to see me today on my first day discharge from second hospital visit. I do not want to spend my last days in ICU with tubes & life support systems prolonging the inevitable. I want to be at home with appropriate support from hospice and family with me. If not home, then the hospice itself. I have an appointment with my Oncologist early in January to discuss further chemo options. But the key thing is I want to try to engage my oncologist in some of this conversation about effectiveness of these regimes; impacts on me. To help me make the decision about the quality of my life. A weekly regime entails 2 hospital appointments every week, waiting for appointments and treatment. This is restrictive in itself and impacts on both me and my husband. And there are the side effects - so I am trying to assess quality of life rather than quantity.

    I recently listened to the Reith Lecture, broadcast on BBC Radio 4 on Tuesday, 9 December at 9 am. It is available on the iplayer radio. The Lecture is by Atul Gawande and on the Future of Medicine. The lecture is entitled 'The Problem of Hubris' - aging and dying. I found it inspirational and am recommending it to anyone I can. He tells a wonderful story and asks the questions about what patients really want.

    If you feel strong enough, please listen.

    This is more than I wanted to write to you and maybe more than you can take in today, if so apologies. I really do know where you are coming from and I hope that you find someone who you will be able to have such conversations with.

    I will post, and again apologies if too much information for you in your vulnerable state. May you regain your strength and resilience as soon as possible. Maureen

    PS I am going down this thread and look at the link posted by another supportive lady on palliative care.

  • Thank you all ... You are all wonderful & giving me all this info and positive feed back.

  • I'm very sorry to read your story, it is a very difficult decision to make, have you talked to your GP? They can be very helpful. I don't have much faith in the current chemo options, although obviously it does work for some, but giving your body a chance to heal and recover having read your description of pallative care will surely not make things any worse and your body may just surprise you.

    Best of luck with this very tough decision.

    LA

  • Hi Eyman.

    You have been having a very tough time, and I hope that given some chemo free time you will become stronger and be able for more treatment if you wish to have it.

    My mam was diagnosed Stage 3C (this may have changed, we have stopped asking about specifics as the answers are generally not to our taste!) almost 2 years ago and is now on 4th line chemo, her disease is also inoperable. However so far she is tolerating this line (cyclophosphamide and Avastin) well, coming after drainage of 11 litres of ascites. A palliative care nurse visits every month or so since mam's first line chemo failed quite quickly and it became apparent there would be no operation, and one of her other patients is doing well on 4th line chemo, and so far so good for mam too, even tho things have looked very bleak at times.

    So I just wanted to say, i hope you feel stronger soon. It is easy for me to say "keep trying, dont give up", both to you and to my mam, but its not simple or easy, and I appreciate that. But if I have learned anything throughout the last 2 years, it is that just because things are not going so well, doesnt mean they won't improve, for a while at least. I wish you strength of mind and body, and a happy Christmas. X

  • Thank u Mary sooo much and to all ...you all so beutiful.

    Mary, may i ask u, how long it took usaully till i have my abdomen to be filled again with ascites ....it was the first time for me to be drained (drainage of 4 litres of ascites). I am a 45 yeras old, and got skinner and i don't like the pain (less breath) as well as the look when i got bloated abdomen with swollen feet. Thanks to all again.

  • Fight fight and fight some more . Please don't give up . Xx

    So sorry ur going through this xxxp

You may also like...