I know that continuing with chemo is a personal thing, and that it has to be my decision, but I have no one else, who understands, to discuss this with.I had my first chemo, Carbo/Taxel in 2016,, and since then have had Avastin, Carbo/Caelyx, Rucaparib and weekly Taxel, which I finished just before Christmas. The weekly infusions really got me down, (there were eighteen in all) and by the end, I was sitting in the car park crying before going in for treatment. There was no specific reason, I was just fed up with the whole thing.
Anyway, the Taxel didn't work and I now have fluid in and around my lung, which has rendered any sort of normal activity impossible, so I spend my days sitting and watching television. As the fluid is in pockets, it cannot be drained, so I am stuck in limbo.
I see my oncologist next week, and know that he might recommend another chemo, which would possibly dry up the ascites, but everything in me is screaming no! My body feels a wreck, and I feel that I have gone as far as I can.
I read on here about ladies that continue fighting to the end, but wondered if there are others, who like me just want to say enough is enough. Will I regret that decision a bit further down the line, even though i know that another course of chemo isn't going to heal my poor body, and might at the very best give me a few more months.
Sorry for a rather miserable post, but I would welcome your thoughts.
Jenny
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Oh friend my heart aches for you and your post is not miserable. I am pretty certain I may be thinking the same thoughts sooner than later.
I know that there are many factors that make this decision hard.
Here are my thoughts for me. I have had many lines of chemo and I am tired. My quality of life is good, but I am slowly losing the quality of life that is great.
I am a Christian and because I have done the one thing that I need to do (admit to God that I am in need of His grace In forgiveness of my sins and accept the free free gift of eternal life), I will peacefully pass from this life to my real home.
When my affairs are in order and I am too weary, I will stop treatment. My body and spirit can only take so much. Medication is here for us, but it is not something we have to choose.
So, fight fight fight as long as you have the will, and then when you decide you’ve had enough, rest and know you are ok making that decision for yourself. Wish I could sit with you and share a hug.
I am OK I suppose. Have just spoken to my oncologist and no mention was made of further treatment, as my ascites is making me too unwell to contemplate more chemo.I have an appointment for drainage and with the respiratory clinic next month, so hopefully that will give me some respite.
hi Jenny. You sound worn out and the strain can catch up on you.
Have you asked your team if they have someone you can talk to about your feelings and options. Maybe ring your team today. You have nothing to lose and it might put your mind at rest. I also think that winter is hard on us to and in the spring we have more to enjoy.
Regarding your treatment. If you have chemo to help dry the fluid then maybe they will give you carboplatin on its own. Which side affects are tolerable and no hair lose usually. I’m not medically trained but it could be something to ask about.
Hopefully tomorrow you will feel a little brighter.
Hi Jenny. I really feel for you. It’s a big decision. I would think refusing chemo would make a lot of sense if you weren’t so uncomfortable. I’m wondering if just a couple of cycles of another chemo might dry that up. I don’t know. But if you really want to stop treatment it seems like it would be helpful to talk it over with a cancer counselor. Hospice or palliative care may have such a counselor.
I’m sorry you are feeling so down, Jenny. I only had 9-10 months in remission after surgery and frontline chemo in 2020. I did second line Doxil/Carbo and as soon as I finished that line, my CA125 took a steep climb. I started third line cisplatin/gemcitabine last November, and it’s not working. Had to stop it last month due to poor kidney function. I have a kidney ultrasound on Thursday. Who knows what that will reveal?!? Bottom line is I share your weariness. I just think my body can not tolerate more chemo. I could endure it when it gave me a few months in remission. Now I’m concerned they are going to want to put tubes or stents in me and I feel quite uncertain about that. Just want you to know that you are not alone in your feelings regarding more chemo. I’m going to make a last ditch effort to get into a clinical trial. I hope we both have the courage and strength to make the best decisions we can for ourselves.
It is hard isn't it? I can see you have been through the wringer too. Now I have given up all hope of a long remission, and I'm not sure further treatment is worth it for a couple more months for my poor old body to struggle on. At one time I would have fought to the end, but now I'm not sure it's worth it.
Have you seen a lung specialist? When I had pleural effusion the oncologists tried to drain it but the real breakthrough came with the respiratory team who knew so much more.
Going to suggest you speak to the Ovacome helpline to see if they can talk through the options with you as they have so much knowledge and experience.
It sounds like quality of life is a real problem for you if you can’t do the things you want to. Perhaps they can suggest some symptomatic relief that would give you a bit of time to recover and make a decision.
Big hugs, hoping that you can find something that gives you a bit of joy ❤️
Thank you. I have actually just had an appointment through to see the respiratory team, so I am pleased to hear you say they helped. Did you go on to have chemo, which dried it up?
hello Jenny, I’m praying God to give you the answers with peace knowing you will make the best decision. I am facing a 5th time cancer has attacked my body. This time in my bladder. Praying comfort for you teal friend. Love to you. Patsy
I'm so sorry to hear this is how your feeling at the moment, my heart goes out to you over this it really does. I like what Delia2 has said to you about maybe just having a couple of chemo's.
I've often had the conversation with myself in my own head what I would do if I ever got to the point where enough is enough. For me personally I would go down the herbalist route as I feel this is an avenue that hasn't been looked into fully and it would give me peace of mind I did everything I could.
Please don't think I'm telling you what to do as everyone's journey is different and only you know inside what is best for you.
Hi. From what I've heard,the chemo would dry up the ascites, which would return once the chemo stopped. I have looked at the alternative route, but people are taking up to forty tablets a day and the cost for me is prohibitive.
Hi Jenny,Thank you for sharing this difficult post, a situation which plays in the back of all our minds.
One thing I try to do (since reading 'Anti Cancer Living') is not to view cancer as the enemy within, something we have to do battle with, because it builds a feeling of responsibility, that we are failing in some way when we hold up our hands and say enough is enough, that we are letting ourselves and our families down, no longer the hero in the story. Cancer isn't malicious its just cells that are out of control.
Sorry, I'm waffling on, but just saying that hopefully your decision can be guided by how much quality of life you have, whether there are things you still feel need completing and whether you are ready to leave.
I hope that your oncologist can guide you by clarifying what benefits further treatment is likely to bring.
Hi Jenny, I’m in a very similar situation (2019 diagnosed) and have run out of effective chemo options. I have been prescribed Tamoxifen but I feel that’s more a placebo! I was given emergency intervention for pleural effusion and chest infection over Christmas. Definitely gave me back a better quality of life and I’m managing to get out following the bank energy, use energy. I weighed up Clinical trials against “live to the end, in the best way you can”. Now I have focus and feel relief that I’m in control. Even though, on occasion, that is accepting that life will have to be day by day..
Such a hard choice for you, especially if they may have a chemo? Unfortunately even those close sometimes forget these decisions have to be made whilst fighting the cancer fatigue constantly. I hope you can get to a positive place that’s right for YOURSELF. Take care, Bex xx
Thanks for replying. Can I ask what the emergency intervention was? Was it a drain, and if so is the fluid collecting again?I have received an appointment with the respiratory clinic next month, so it will be interesting to see if they have any suggestions.
Not much to add, except to say that it is OK to decide that you've had enough. It might be worth asking for a referral to hospice, as that is not just a place you go to die, but they are concerned with quality of life, rather than prolonging life at all cost. Sending hugs!
i am sorry to hear how unwell you are feeling following your weekly taxol treatment. I may be wrong, but was it you who posted a while back that your oncologist offered this treatment, but equally suggested you might want to consider not having any more treatment and continuing your journey feeliing as well as possible without it? If it wasn't you, I'm sorry, but if it was, I remember being impressed that you were given that option, although you clearly decided to proceed with further treatment, as was your right, a decision I considered extremely brave.
I'm at the 'weekly taxol for six months' stage, but have so far refused to have it, because it seemed to me I might feel worse during and after it than I currently do, and it's quite clear to me that I am on my way to the exit gate with our without it; Taxol is not going to kill my cancer and save my life, because the cancer keeps returning. My one aim for the last year or so has been to learn acceptance and work out the most comfortable and 'abled' route to that exit gate, since its apparent my cancer is not going anywhere regardless of treatment. I may yet have some taxol IF I believe the symptoms I experience can be helped or assuaged a bit by it, but otherwise, I'd rather remove my eyeballs with a fork, to be honest.
On the other hand, I've never had most of the treatments you and others have, have refused them - following debulking surgery in January 2018, I have only ever had two lots of carboplatin, about 18 months apart. I refused adjuvant chemo after surgery as I was already Stage 4b at diagnosis, then had carbo followed by Niraparib 2 years later when ascites arrived, and then again 18 months later, reluctantly it has to be said, to which I had only a partial response. In other words, I've been mostly living with my cancer rather than feeling the need to 'fight' it - I know this attitude is not for everyone, and I am full of admiration for those who continue to have any treatment going, often with a degree of success - certainly, were I younger, I may have followed that route. But be aware there is no law or rule you break by refusing treatment, either in the spiritual or physical realm; we each must decide for ourselves what we do, according to our own lights, and regardless of other's approval or disapproval.
The next step is to ask if there is anything else they can do for you in terms of relieving your current state of health to maybe get you back on a better footing, something to ease the symptoms you are experiencing; I very much hope there is some palliative treatment that might.
Thank you. Yes, the oncologist did say that he wasn't very hopeful the Taxel would work, and for the first few months my CA125 fell and I thought he had been proved wrong. Unfortunately, that didn't last and the cancer romped away.
Hello my friend. I would like tell you, that you are not alone. I live in Switzerland and I've been fighting with OC stage 3 from 2019. Three surgeries, three lines of chemo, Avastin Niraparib and still progression. I've started the 4th line of chemo (Gemzar+Oxaliplatine) 10 days ago with extreme hemotoxicity which ended up with a postponment of the second infusion of chemo and a blood transfusion yesterday. I'm starting to get tired of all these treatments. As my cancer have spread in my peritoneum, I'm still looking for an opportunity to get enrolled to so called PIPAC procedure which is intraperitoneal chemotherapy (less invasive and more efficient that IV chemo). So far, it seems I'm not illegible to PIPAC as my lesions are too big. I feel I'm approaching the end of therapeutic possibilities. My quality of life is still good, I don't take any painkillers, and so far no metastases to vital organs. Here in Switzerland we have the organisation called "Exit", which enables patients with incurable deseases to benefit from assisted suicide. I'm member of "Exit" and nothing but having that choice gives me a sense of relief and control.
i so wish we had something in the UK like that - I have looked at going to Switzerland myself, but its very expensive. You are 100% right when you say that having the choice of assisted suicide brings both a sense of peace and control - this is what people who are against it and currently well completely fail to understand. I wish you well on the rest of your journey.
How fortunate that you have the Exit alternative. It is suffering towards the end that frightens me so. I’m in the US state of Louisiana, which is not a Death with Dignity state. I recently told my younger sister that I was considering a move to California which has provisions for assisted dying for residents who are expected to live six months or less. My sister became furious with me. We haven’t spoken for months. Of course, such a move would drain me financially, but as they say, you can’t take it with you. In a few hours, I will have a rather somber meeting with my oncologist and my daughter. My daughter’s feelings matter the most to me. It will be three years in June since my debulking. Time has flown, but I am so grateful to all you ladies who so generously share your thoughts and experiences, and to Ovacome, for making this sharing space possible! May each of us enjoy as much quality time as possible, and when that time comes to an end, may we pass peacefully.
Thank you Sashay for your testimony. What we all fear most is pain, suffering and slowly disappearing piece by piece without dignity and control. Fortunately, in the US, assisted suicide is allowed in many districts: California, Colorado, District of Columbia, Hawaii, Montana, Maine, New Jersey, New Mexico, Oregon, Vermont, and Washington. Even if we never use this option, it's good that it exists and gives us a sense of free choice. Quality and dignity of life is very important.
here in california one is able to acquire drug formulation as an exit of life but done at home w pharmaceuticals given out by hospital
one tell doctor what one wants and do it before its too late - better early
must see doctors to discuss why one wants the end of life drugs/ that one is doing this w free will/ etc and so on - many people have had the drug concoction but have not taken it - some people have to put themselves out of misery
what is quality of life - hospice is where many people go - not just cancer patients - but patients with other problems too
its comfort to have something that is in ones own hands rather than someone who disagrees - we who have cancer and i have a terminal one trust me - its terminal - have signed up thru palliative care - it takes about 3 weeks
at the moment am doing ok - hgsc primary peritoneal
spread thru out - so far uncomfortable - bloating - distended stomach
was on carboplatin/ taxol no good 8 weeks
started doxil going in for 2 cycle end of February - will see side effects ugh
Only you can decide how you want to play this out
i tell oncologist that i will continue w chemo or immuntherapy how ever it is spelt and continue w private blog for close friends to show them what having cancer is - no holds barred - cancer is messy - painful
So sorry that you are in this position and feel like you have hit a brick wall . I'm sad , too., you have no one who can pop in and share a cup of tea with you .I got to a similar position , talked to my boys about not going on , that the chemo had taken all the joy out of life .. Getting up in the morning was a chore . I talked to my oncologist , who is female, and told her I just wanted some quality of life . She immediately adapted my treatment away from chemo to immunotherapy with fewer side effects and quality of life back .
I haven't had lung issues etc. For a cold but my kidney function isn't great and I have a drain in my left kidney which is a pain but can cope with to date .
Re , other suggestions getting to a lung specialist might be your best option ,
I pray that you can find the support and help that you need very soon .
There are so many wonderful , compassionate ladies on this forum and they understand what you are facing .
My very best to you and I wish you much peace in the decision that you make for yourself going forward .
Hi Jenny, My main concern for you is that you "don't have anyone who understands" to talk to. Does that mean you don't have a support group in your life, family & friends. Although this group is amazingly supportive & we all understand where you are coming from, I'm sure most would agree that we also rely on our family and/or friends to just listen to us. Whether they truly understand or not, is not as important as just being there to hold our hand while we make those decisions. I hope you do have someone like that. I found that some may seem a bit aloof at times but it's only because they are scared too.BUT yes, my heart aches for you and all I can do is repeat something I wrote on here for someone else, which is that it takes more strength & courage to make this decision than to put yourself through more treatment without the promise of a positive outcome.
I was diagnosed with stage 4 in 2015 when I was 63 (op & chemo), again in 2018 (op & chemo) & then 2021 (chemo only, followed by immunotherapy which is currently still working 🤞). I have a PALB2 gene mutation, so chance of a return is fairly high but I'll face that when/if it happens and when the time comes to make an "end of life" decision, I know it will be OK. I'm not religious but I trust that the universe will guide me.
I'm sending a huge amount of love to you Jenny & hope you find some relief soon (either way).
Hi. Yes I do have family, who are there for me, and I do have friends, but now that I can't socialise or go away for the weekend, the relationship had changed.I have arranged to see a counsellor at the hospice too.
I contacted this forum, because a good many people on here will have thought about their end or even already opted to finish. treatment. It seemed to me this was the best place to come for advice.
Oh Jenny my heart aches for you. No-one but those of us who have shared this path knows how hard we have fought and continue to fight. Each battle seems like an eternity with questionable victories. I too have fought and am close to the tipping point. Carbo/Taxol remission ha 6 months then Doxil/Carbo and Olaparib remission 4 months then Cisplatin and Gemzar no remission and it has roared back. I am trying Keytruda/ Avastin infusions every 3 weeks and cytoxin pill every day. This is only to try to keep it from progressing not shrinking..........however my cancer is extremely aggressive this all happened in 3 weeks from stopping my last chemo. Docs said maybe 3 to 6 months if this doesn't work. I am going to a place called City of Hope in hopes of some type of trial. I recently had to have my kidney accessed for drainage because the cancer blocked part of my bladder. Really could nt give me the dignity of even that! They cannot place a stent in the bladder because of the cancer.
I will keep trying and hoping for a little more time. I hate this disease and though they have made leaps for braca patients nothing for those of us who have no mutations no hormone no enzymes just straight High Grade Serous Cancer.
Only you can determine along with your family what you feel is best. We are all here for just a little time and some of us even shorter. Make the best of it for you! You are the important one. No one likes to look at the end of life because life is precious to all of us and seeing our loved ones face one more day oh what a treasure.
Thank you. You have found the urge to keep fighting, but I don't think I have. Last night I felt really ill, and with the inability to do anything, because of my shortage of breath, the life I have now is not really enjoyable!
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and continue w private blog for close friends to show them what having cancer is - no holds barred - cancer is messy - painful 
what did you do last weekend?
Now what do I do? 
Unsure what next to do 
