Just finished 2nd line Gem/Carbo and avastin. Consultant very pleased with my response to it but I'm very disappointed it's not all gone and now have to live with it knowing it's only a matter of time. Kids are 23 and 19 - I so want to see my youngest graduate but that's 2 years away. Have chosen not to tell family and friends at the moment but finding it very hard to stay positive and not think about how bad it is going to get. How do we live with this every day ladies and why are we the unlucky ones??
Gail 😩😢😢
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gailhay
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Hi Gail sorry to read your post and your news! there must be other things they can give you my onc tells me there are lots and lots of different drugs available if they haven't offered you anything else go back and ask them for something else. There are also the un approved drugs cannabis oil is supposed to work I haven't tried it but I know others that rave about it! keep looking for something else.
Sorry to read your post. Has your Oncologist mentioned more treatment at all? With regard to your question about living with this I'm not sure there is an answer except to say that whilst we are still here we fight on. I try not to dwell on what might happen otherwise I feel that I will just have wasted any time I have left worrying and not enjoying each day. It is so hard to stay positive and not ask why us...... Maybe you could try counselling, I know it's worked for others, given them a different prospective in all this. I wish you well, sending you a big hug, Kathy xx
Thanks Kathy. Virtual hug received. I just seem to have lost my way at the moment so perhaps counselling might help although I find sounding off on here does help with all of your positive replies. The Onc has put me on avastin and has said see how that goes at the moment. So fingers all crossed.
You very kindly responded to my PM a couple of weeks ago. Mum has to go for a scan next week, but her CA125 (usually a good indicator) has slightly increased over the final 3 sessions of Carbo/Gem and so it sounds as though you are in similar positions. We have not discussed in full the next step, as there seems little point as there is a scan on the way, but Dr has suggested we could look at Tamoxifen or cyclophosphamide as maintenance treatment. Interestingly, cyclophosphamide is an old drug, but is currently in a trial with nintedanib. METRO-BIBF
The trial seems to indicate that it is accepting patients who can no longer have intravenous chemo, but Dr seems to be considering offering the cyclophosphamide to Mum just to give her a rest from intravenous chemo. I'll let you know at the beginning of Aug when we know more.
In the meantime, best wishes. I am sure you will, once again, pick yourself up when you have had time to digest the news. Having studied this forum 2.5 years, I am convinced there are more options out there for you.xx
Thankyou. Yes please keep in touch I would be very interested in hearing from you xx
Hi Gail I was told exactly the same thing after 1st line, I'm just finishing weekly taxol, I must admit when my oncologist told me I was devastated, I found it just as hard a s when they first told me I had OC, but I did eventually pick myself up and try really hard to concentrate on the good times and the times I'm not on treatment, I have down times but on the whole I'm doing ok, I'm working, I'm taking holidays when I can etc, I'm looking forward to a break of treatment though!!
It's hard to come to terms with but stay strong and big hugs
Thanks Karen. Is this taxol 2nd line treatment for you? Yes I guess I just have to get over the disappointment and then focus on the good times and make them very good. Xxx
Hi Gail yes last one tomorrow of 2nd line hopefully!
It's hard to come to terms with Gail, it isn't easy and I still have days where I am totally overwhelmed by all of it and then the tears will flow and I can't stop. I know to that I will finish this treatment and I really hope I get longer than the 1st line which was 6 months, but I know I have to do it all again. I am a positive person (honestly) and I really try very hard to concentrate on my lovely husband and family to have good times. I was told my by CNS to treat it as a chronic condition and they will control it, I trust them to do their very best for me, but I will ask questions about different trials and new treatments etc.
I'm sending you lots of positive vibes Gail and a huge hug, stay strong
I finished the same treatment in April 2015 for first recurrence (although I am still on Avastin) and I got the same results. I have CT scans every 3 months and these have shown small reductions of the remaining tumours/nodules each time. I have my next CT scan on the 15th.
I do have my moments but I feel I cope quite well living with uncertainty. I try to dismiss worrying thoughts by asking myself if I feel well now. The answer has been yes so far. I then tell myself if today I am feeling well then I shouldn't spoil it by worrying about tomorrow. My energy is precious so I don't want to waste it in worry when life is so sweet. I worried all my adult life about losing my lovely mum. She wasn't expected to live past early adulthood having been left with heart disease and disability from a childhood illness and was diagnosed with diabetes at an early age. Having survived ovarian cancer for 21 years now, she's still here and well at the age of 82! What a waste of my energy it has been, worrying about her!
I have a new grandchild due in December - I want to see them go to school and that's what I'm aiming for and beyond hopefully 😀.
I am an absolute realist as a previous health care professional but have every confidence you'll be at that graduation. Treatment is beginning to evolve and improve at a rapid rate and you may have a very long period of stability anyway.
Wow Thankyou Sandra. You have given me a lot of hope. So even on avastin the tumours are shrinking or at least stable? I am a nurse and midwife -and sometimes that throws into the mix too much knowledge and realism that I wish sometimes I didn't have. Let's keep wishing and hoping for the dreams - Thankyou xxxxx
Hi Gail, I so understand where you are coming from, it is really difficult living with the uncertainty of what might happen next. I don't know the answer I'm afraid, I have been trying to get used to it for just over 2 years and I still wonder what on earth caused it and why me. I just try to find things to do with my family and friends that we can enjoy together while I am feeling well. I'm now on 3rd line which is weekly taxol and avastin. I have kids of similar ages, 20 and 18 and like you I'd love to get to their graduations and beyond. I know some of the ladies on here have had long periods of stable disease after avastin so that gives reason to hope for a similar response. I have had some counselling and am considering having more - it can be quite emotional but it does give you a safe place to voice your feelings and find ways of coping with this reality. With love and hugs,
Thankyou Madeline. It is just so hard for our families too. I know there is a lot of promising trials out there I guess we just have to fight as long as we can and enjoy life to the full xxx
I was devastated when I was told of my latest recurrence. I had already been told that chemo doesn't usually work very well on my type of OC (GCT), & previous recurrences were treated with more surgery. But this time I was told it was coming back too quickly to keep operating. I thought now it was back to stay, I wondered how long I'd got, didn't think they could do any more for me. I was very weepy. But 3 years later, they're still trying to help me. I've had 2 courses of chemo, which were of some help, but only a limited amount, which was very disappointing but not unexpected. Since then I've been on hormone therapy, currently taking Tamoxifen. I still have OC, & obviously would prefer not to have it, but I'm living with it. At times it has grown a bit, & at other times it has got a bit smaller. I've been told there are other things they can try when hormone therapy no longer helps. I hope they are able to find something to help you too.
Thankyou. Di. I guess it's coming to terms with it that their is no longer a cure but it is a chronic condition and I need to find my positivity back. You lovely ladies have definately helped xxx
I agree with what everyone else has said but also please, please consider telling someone close to you. It's my family and friends who get me through and they have been amazing. I also think it has helped that they felt they could do something to help me. There is a lot of love out there for you,
I agree that they would help and support but How do I devastate my kids again? and feel if they don't know - I shouldn't be telling others - but I am in need of support xxxx
Only just seen your note ans you may have been overwhelmed with replies but I am still here after almost 5 years, 3 lots of surgery and on my 5th line of chemo, so don't lose hope. I try to give myself little treats or something to look forward to for the week/few days before the next treatment. I am stage 3c and don't know if there will be a chance of any more chemo after this lot, which I requested to repeat (Carbo/Caelyx) but try not to dwell on the future.
I don't diet or avoid any foods I like (well I suppose I do restrict my desire to eat chocolate/cakes/biscuits non stop) and try to be as active as possible.
Don't lose heart - there's a lot of us still around and you can hope to make it too.
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Big disappointment!!!
Disappointing result from Niraparib
Disappointment on the DICE trial
disappointing CA125 resuts
