So the biology of my tumour was the reason I wasn’t eligible for the trial. It seems that even though it is ovarian cancer that I have, the tumours are presenting like womb cancer. So I was asked the all encompassing question - what is more important to you? Quality or quantity of life? Well, both actually. Because my tumour has elements of womb cancer in it I can try hormone therapy - tamoxifen and megace which could be successful in stopping tumour growth. This is the less harsh option. If I want guaranteed quantity then cistplatin and epi (something - head is too full to remember at the moment) but that is the harsh option.
I have chosen the hormones although I have signed the consent form for the chemo but we’ll ask the question again if it comes to it.
So, demanded blunt numbers today.
Nothing at all - 8-12 weeks.
Chemo - an extra 8 months or so.
Hormones - depends on whether they work but anything up to a year.
Wow! What an afternoon. I intuitively knew that things were not good because of that pesky liver but to have it spelled out is quite sombering.
So, I will go home, tell my children and friends the plan, cry a lot, take my first lot of hormones and then wake up tomorrow with a plan of how to have the best few months ever - and who knows, I might be one of the ones who responds well to this hormone treatment.
Thank you for all of your support - it is my new resolution to not be miserable any more (after today 😜)
Becky xxx
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Big hugs. I was listening to the same doom and gloom in January. I chose quality although having a bash at Avastin. Gone downhill a bit since we got into May but that’s by the by
I would spend a lot of time thinking about what you really want. I wrote out mind maps, had some brain storming, family meeting and then some cold hard chats with myself. I didn’t want to be led by what anyone wanted for themselves because their choice was always going to be time led
I would ask for an out patient referral to the hospice as they will chat to you impartially. This was a positive experience for me and helped me to also reach the point I am out now
Good luck keep us updated while you think it through as I found other input helped too
Hi - I should be expecting a call from hospice care in the next few weeks. At the moment I think the kids are going to need it more than me as they aren’t really talking, although it was a massive thing to hear in one afternoon. Jessica will talk to me but Jonathan will just bury himself in his room if we let him. I think sitting down together, being positive about the hormones working and making some plans for things to do in the sunshine will be a start.
What a journey hey - I know all cancer is crap, but if we had to get it, why couldn’t it be one of those that gets the message after treatment and leaves you alone!!!!
What a choice... the hardest in your life, just impossible as no one knows what's going to work for the best for you..
Yes, quality or quantity ( of course you want both)
I had to fill in another of those q or q forms when I was in on Tuesday..
I was prescribed megace for putting weight on but after I read all the contraindications I realised it was not for me... and I haven't got a hormone related cancer either..... I don't want double symptoms on top of how I feel right now. So fish and chips tonight to add to the constipation route.
The other option you mentioned was I think, tHe Rotterdam regime of weekly cisplatin and etoposide tablets. So although no one has actually said anything to me, I think I am on the quantity route. I've had the 4th ( out of the possible 6 sessions) and I can tell you it's the toughest one I've been through...
Hoping you've made the right choice and can get out and about as much as possible and live life to the full!! Oh and have a little misery on the side, you're allowed.... I am a right snappy misery guts today
Tough. You are very bold to ask for the numbers, Becky. Like Janet above I'm having a crack at the Rotterdam (cisplatin and etoposide) but have only managed one lot so far because of getting an infection and sepsis. I'm rallying and all being well I'll get instalment 2 on 14th May, but I'm quite prepared to stop if it continues to be such a bumpy ride, as my recovery from the sepsis is up and down, and I'm not getting out and about as I would like to do. It depends how physically strong you are and what you want to put your body through, and I think you'll know instinctively what's right. Wishing you all the very best. x
Sending mega hugs Becky...what a horrible afternoon you’ve had! Don’t forget that many do outlive their prognosis. Not sure why you couldn’t have both treatments? Chemo followed by the other one. You have lots of love and support here xx
Its hard to know what to say Becky---and the questions posed are hard to answer when asked. I like your idea to sit with family but ultimately to meet with yourself (!) to make the hard decision about treatment. And the never ending message on this support site is one size does not fit all so whatever they say is not always what will happen to you-- and by what your reaction to chosen treatment is may make life better and easier. I like Lily-Anne's post about contacting Hospice for their input. Have not heard one bad thing about discussions with them.
I CANNOT TELL YOU how utterly gutted I am for you and the family.. What an awful,awful decision you have to make. Whatever it is Joust truely hope you beat the odds. LOVE Chris
Sending all my love on what must have been a very difficult afternoon for you....and I’m sending ultra positive vibes that you have a great response to the hormone drugs and who knows, you can keep the chemo option on the back burner if it’s needed, and you may actually find you don’t find that particular regime very difficult, as we are all different and respond differently.
Good to have a plan and I’m sure you’ll be planning some wonderful trips and events with your family over the summer, sending massive hugs to you and I know you’ll get tons of support on here Xxx 💕
I hope the hormones do work for you but you do have the fallback option of the chemo. I can't remember if you've said before but have you considered having a second opinion? There may be trials suitable for your type of ovarian cancer, despite not being suitable for this particular trial. Were you told what it is called? Is this the first time it's been mentioned to you?
Looking forward to reading about your plan for the best months ever.
Hi Beckyjh, So glad you sound more positive and have a plain in place I hope the hormones to the job but if not you have options , don't forget if you do have a bad day we are here to cheer you up..Take care Lorraine xx
Big hug of support. Think hard and deep what you want. Such a difficult decision. My heart goes out to you. It might be helpful to have some family counselling. Just a thought... It might not work for your family, but then again, it might.
Hi Becky.I wouldn't put much emphasis on the quantity of life they gave you.We are all individuals and respond differently to every treatment ,your emphasis now is enjoy ,enjoy and enjoy life.Live it to the fullest but, don't tire yourself out .The first thing. I would do is book a spa break.😀💕
Annie, I really like your comment about quality of life. Right now, I'm ridiculously happy and contented with our normal routine. Some of us don't need the trips and special events. There's a danger of us feeling like we need to be doing more in the time that's left us, a sort of frenetic feeling that can take over. XXOO
Look after yourself.. don't feel that you have to maintain the strong front or social mask for the sake of others, if all you want to do is some quiet time on the sofa. Family and friends may prefer quantity, but there has to be the capacity for actually living a little, and they will hopefully understand.
I like Helen's suggestion: Try the hormones and see if they work.. can always fall back on Rotterdam chemo, no? And as LA said: Touch base with a hospice and see what they can do to help you maintain the best quality of life going forward.
Hugs. Maus
good luck with the hormones and you still have the chemo as back up, as others have said you may not find the chemo as hard as some people do. You will find the right course for you, keep hoping and enjoy each day as much as you can, best wishes Dawn
Find it hard to know what to say , such difficult discussions with loved ones and as you say after going through so much already you shouldn’t have to face this . Hope the hospice can be a support for you and the family and that the hormone treatment keeps you well and stable .
Miracles do happen my friend was given 2 weeks after she had to stop a immunotherapy trial at the Royal Marsden for recurring skin cancer . She had a big party ,( very emotional but lovely , sold her car and business and spent a weekend with her kids at a posh spa hotel in Cornwall. 3 months later was told her tumours had shrunk and her bloods improved.
She has bought a sports car and is travelling Europe at present , living each day to the full .
Stay hopeful and try and enjoy each day . I have tried to convince myself it’s not about how long we live but how well we live , but not easy . Sending love and positive vibes . Love Kim x 💜
Boy, I like the above message, but I know you are not ready for that sports car.
Choosing the hormone therapy seems wise. It might work and it might improve your quality of life and then you might hit it with Chemo again.
Be good to have a break where you could eat again. Also be good to find out more about that bladder tumour, since the doc talks about it as if it had different properties than your liver spread.
Once again, find out what you can, just as you are doing and I do hope your quality of life improves.
Sending you a big hug Becky. What a really difficult time you’re having. Loads of sensible (and some wonderfully madcap) ideas from our gang. If it’s any help, I’ve been on tamoxifen for past six weeks with no ill effects except a few hot flushes. Hope you get out to enjoy the sunshine this weekend.
Just the tamoxifen. Have to say I’ve never heard of magace. Will investigate when I get home. Away for weekend in the glorious Peak District. First visit for 40 years!
I read your post and saw my future too so had a little tear for both of us! Bloody bloody disease... you have a good cry you are allowed! Your attitude sounds spot on, wishing you the best months, sending lots of love.
Oh what a terrible time you're having! We all feel for you and I hope all the supportive replies on this forum are giving you some comfort. Do write as many posts on here as you need as that in itself can be a form of therapy. Very good luck - you are not alone... Gina
My daughter is 17 and my son 15. They’ll be ok, it was hard for them to hear the news yesterday but today it’s business as usual- me in the garden, hubby mowing the lawn, crazy dog running round the garden and the lawn mowe in circles,daughter binge watching Netflix and son on his Xbox and I wouldn’t have it any other way xxxxx
I feel so saddened to hear you are having to make such difficult decisions. I suppose we are all fearful that the day will come for some of us to make our choices too. I think that there are no answers that can be clear on prognosis. In the end no one can really tell us what some of us would like to know in order that we can make plans and prepare ourselves and our families. We all have hope that we can cope with the treatments offered without putting those nearest and dearest to us through the wringer. Wishing you all the very best in whatever choices you make on this lonely journey and hope your family can come to terms with your decision.
I guess the best to do is to go with your heart. I was told recently that it had taken off and I was chemo resistant not much left to offer me. So I front up to the oncologist and my latest scan has shown that everything has stopped. So after planning my funeral and going for quality they tell me that carboplatin still is working. Go figure!!! So my advice to you is believe in yourself you will know what you need to do. Listen to the inner voice. Sending love and best wishes. Sharon
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