Got very bad news on Monday that there will be no more chemo for my mum and that she's platinum resistant .took 2 reactions to carbo and oxilaplatin .ca125 is 250 and on oncologist is leaving well alone .
I asked re desensitisation ,caelx ,cisplatin etc etc .
She was changed from letrizole to tamoxifen too and that was it .we are all feeling helpless and sad .any thoughts or help would be appreciated .thanks for reading
Hi sorry to read your news. Sandra stopped all chemo last July after enduring 6 lines of chemo, she started Tamoxifen which did stabilise things as seen on her Nov scan. Her scan in Jan did show stable of many locations but progression in new locations. She was taken off the Tamoxifen 4 weeks ago and is currently receiving nothing but steroids to improve her appetite. We are back in clinic tomorrow and will seek advice on restarting the tamoxifen and perhaps increase the dose above normal if it is permissable. At the moment she is ok but her bloods tomorrow will be key. Love Paul xx
All the best for tomorrow Paul. You have both done so well despite the oddsxx
So agree with soapsuds Paul, all the very best tomorrow - you are both such an inspiration xx
Thank you for replying Paul .v interesting indeed and helpful with regard to dates etc.i wonder why they stopped tamoxifen with Sandra ?hopefully bloods will be ok tomorrow and tamoxifen also possibly be restarted .
I'm trying to take 1 day at a time but it's very difficult and my mum is very worried and asking a lot of questions which are hard for me to answer .
Take care Paul and Sandra .xo
It must be difficult to answer those questions..... Are you getting any support from Macmillan, the local hospice or Marie Curie nurses. It may be worth asking your GP. Some women on here have really found the support very valuable and a great comfort. They are expert at having those sorts of conversations that are probably weighing heavy on you all. It's not about dying, it's about making the best of living with this disease. Love and hugs to you and your Mum
Love Wendy xx
Thanks Wendy for reply .i know what you mean .i have 1 nurse who works in palliative care who visits periodically and calls the same .will maybe try her and see what she says .thanks and best wishes to you .
When we were looking after my mother in law a few years ago, we found that having a few old photos to talk about led onto some heartwarming and necessary conversations about family, relationships, memories of those who had gone before etc etc. we were really glad to have had those conversations while she was still OK and able to laugh and realise how much we loved her.
Love W xx
Just to say I am sorry to hear this thinking of you.
Sending best wishes love x G x
Thanks gwyn ,most kind of you .love and best wishes to you .
Thank you gwyn .im so sorry .i didn't know .d cx
Thank you Millie May ,your very kind .lv and best wishes to you .d xo
Hi and sorry to hear the news about your Mum. The first thing that springs to mind is what does your Mum want?, is she happy to have say palliative care OR would she want to try another chemo?
My wife was in the same situation last year when our Oncologist wouldnt do any further treatment even though we wanted it, nor would they refer us to another hospital that was willing to more chemo....
The above scenario was played out over 6-7 weeks during which time my wife sank into a deep depression because in essence 'hope' had been taken from her.
Its extremely difficult when the Onc says 'no more' and unless your Mum is happy (you know what i mean) to go along with that, then i would ask for a referral/2nd opinion/go on a trial etc etc
Whatever you decide.....good luck.
Thank you for replying .i think my mum may be thinking like your wife .ie no hope ,what is going to happen in the future etc .
Dr said no more chemo ,you're not suitable for any of out trials etc.
I mentioned avastin and he immediately was on defensive .we can't get avastin here in n Ireland !
We also can't get a 2 nd opinion or go private as I've already tried .
Best wishes to your wife .
Lv Donna xo
I'm so sorry if I hurt or offended you in any way yesterday by my post.im so sorry and I didn't know about your wife as I haven't been on this site regularly .deepest sympathy to you.donna xo
Thehusband ,so sorry if I hurt or upset you by what I said yesterday in my reply re your wife .im fairly new to site and hadn't realised your circumstances .and for that I'm truly sorry .
Sorry for their up .
Kindest regards Donna xo
Donna, absolutely no need at all for you to feel sorry about anything at all, i totally understand that you were not to know my wife had died, i didnt mention it because its not an outcome many want to hear - for obvious reasons.
So PLEASE dont think for a second that your response upset me - it honestly didnt.
On a swift change of subject, i think i read that you live in Ireland, my wife was originally from Cork, she came over with friends for a summer job in 1969 and met me......the rest as they say is history.
Take care of yourself. Laurence.
Dear Daughter, I can so empathise with how you feel, when my mum had cancer and my son had his brain tumour i was so angry at the world, I wanted everything possible to be done. I couldn't eat, sleep and didn't look in a mirror for over two months - I had a huge shock when i did 2 months later as my hair had turned completely white in the new growth of hair. I so wanted to 'make them well' i would have given anything. I called doctors, researched new trials until finally i had a complete and utter breakdown. I remember clearly pulling out my large 'bin area' in the kitchen crawling inside it and howling for hours my heart hurt that much. Why am i telling you all this you probably ask, the reason is only this and only this, when i was diagnosed with Ovarian cancer last July, i realised non of us know how long we have but what I would have hated more than anything was for my families time with me, however long that may be to an unhappy time and for it destroy them too. I so didn't want them to be 'consumed' by anger and see the sadness in their eyes, it was my job as a Mum to 'protect' them. You keep on asking questions and demanding answers but don't let this god damn horrible disease take away the wonderful events of today you can have with your mum loose to the fears of tomorrow. Much love to you all xxx
Oh Jeanette you have had a time of it ! Bless you !
Thank you for replying .i understand completely what you are trying to say .in fact I did say to mum today the very same thing .we do t know how long we have got but let's not be miserable .
It's just such an awful situation. To all be in .
You take care of yourself .how is all going with you at minute ?
Lv Donna xo
Oh Donna, I'm so glad you understood, all day iv fretted i may have upset you, I know each and everyone one us maybe travelling the same journey but we all view the 'journey' through different eyes. I am so glad you could have that conversation with your mum- despite the awful circumstances and hope you both have a little bit more 'peace' (if that's the right word). We are good Donna thank you, we have had the blessing of today, have not a clue what tomorrow may bring 
but i wish you strength Donna, for i know just where you are coming from. love janette xxx
Hi Donna. I am so sorry your mum and you are going through all these worries. I too live in N Ireland. The reason we do not get Avastin here is because it has not been approved by NICE for the treatment of Ov. cancer. They don't get it in Wales either. We have devolved Governments. They get it in England because they have a Cancer Drugs Fund which allows doctors to try other drugs that have not been approved by NICE for a specific cancer. I don't think any of our oncologists who specialise in Ov. cancer do any private work either. They are all based at the city hospital. However a case for special funding can be made in order for a patient to get a specific drug, it has to be made by the consultant, but he/she can only make that request if they truly believe it will work. I think Avastin works for some ovarian cancers but not others but I am not really sure on that. Some of the ladies on this site are on this drug and may be more helpful to you. Contact MacMillan, as you could speak to someone there who could help guide you. Good luck. Ann xo
Hi ann ,thks for reply .yes I no we can't get avastin here ,it's so frustrating !!! Do you attend the city hospital then too ann? Would b interested to chat to you more .
Just so upset that there's no more treatment for mum and hope has been taken away from her.
Take care and keep in touch fellow n Ireland lady
Regards Donna xo
Yes, I attend the City. I completed 1st line chemo in DEC 13 and am currently waiting my first review appointment. Please don't give up, were you with your mum at her appointment? If you have questions, try contacting Ailish McColgan the CNS and she might be able to help. She is based in the City. I believe all ovarian cancer patients i n NI are treated at the City. I live in Belfast. Would be happy to talk yp you if you want. How many cycles of chemo has your mum had? Ann
Thank you re info .will contact ailish.yes treatment at city hosp .would love to chat sumtime.d x
Don't give up. I was told the same two years ago at the Marsden no less but I went to another consultant in Birmingham and have had all sorts of successful treatments since then and I am still here to tell you about it.
Best wishes and good luck
Chezgravel ,thank you v much for your response and I'm delighted to hear that news .d x
Where are you based. If you need further information I can give you my whole story which will surprise you I am sure.
Hi there ,I'm in n Ireland .where are you?d x
Hi. ,I'm in n Ireland .thks d x
Thank you so much for all that info .sounds amazing !d xx
Glad to hear that you appreciate the answer! Hope you checked out the things I said coz the info disappeared.
Dear Naomi,
I know you might mean well but the link you posted about a retreat in Australia is a little bit unrealistic for a UK ovarian cancer forum i.e. most of us on this forum live in the UK therefore apart from the fact that we might not be well enough to travel the considerable distance, there is the issue of travel insurance that affects most of us too...
Forgive me if I mention that this could seem like an advertising ploy rather than a support.
Best wishes x G x
Hi Gwyn,
I thought that letting someone in need know where to find answers is support, it makes the difference between life and death. Being part of the solution I call it support, beside that I experienced the retreat I recommended, advertising would be if I get profit from it but I am not. I regret that things are taken that way. Then all is left is to say sorry to hear that this unfortunate sickness is happening to you, but offering no solution in any way.
There are health retreats in Spain and Europe that will be closed by, but yes, one have to be able to afford the traveling physically and financially, I agree, but when one is desperate will give it a go or may not, the receiver choice.
I notice that my response does not appear here anymore, have you deleted it? Would this mean one makes the choice for another?
Dear Naomi,
I am sorry you thought I deleted your post, of course I didn't, I have no facility to do that, I assumed that after my comment to you that you had the good manners to delete it yourself ( I did think it was strange though that you deleted it without an apology ) I actually thought you realised how futile it is to post such a wonderful retreat up that is many hours away by plane from the UK without us having the means to get there... I am not talking about finances but like I have mentioned already (1) not well enough (2) no insurance....I don't know whether you have OC or at what stage... but you are replying to a person whose mum has exhausted all treatment options you can therefore gleen from this that her mum is poorly and not in a fit state to travel to Europe (again an insurance issue) let alone Australia...I am sure there are many Australian cancer forums though that this suggestion would be a good idea (but not this one).
I would also like to add as a person with a progressive incurable ovarian cancer myself (having had it three times) and so far still in the position to have treatment options..I know only too well when these treatment options stop (and they will ) what a trauma it must be... people then clutch at straws...offering expensive unpoven cures isn't helpful..
I am pleased that you have benefited from going to this retreat yourself and I am sure it would be a useful suggestion if it was in the UK.
As Millie says we do however have well respected cancer centres in the UK without the extortionate prices that this particular retreat seems to have ...in fact the one Millie mentions offers respite for free.
My suggestion that it might be seen as advertising is a reasonable one given that we have had people doing this very same thing in the past.
In conclusion then the moderator of this site found it necessary to delete your post, presumably because it contravenes the terms of use.....
whether this would be because of the link to the retreat or drug company or both I do not know... (it does say in the rules though... that they reserve the right to delete a post and are not obliged to give the reason why)
Best wishes
Love x G x
Dear Millie,
I have only just noticed Naomi's post, thank you for explaining to her that we have no way of deleting other members posts, if I did.. why would I bother to write a comment to her ? (It does seem to me to be an odd way of reasoning)...
I agree with what you say about promoting unproven drugs though...even though I didn't touch on this in my previous comment ...(I didn't want it to be seen as nit picking)
Thank you again for your support and the courage to stand up and be counted is much appreciated.
Love x G x
Gwyn
NIT PICKING NEVER!! You always give us your support and as are as helpful as you possibly can be. You always have our best interests at heart.
Thank you Barbara.
Thank you Barbara,
Your support is appreciated love x G x
Dear Millie.
thank you for a very concise explanation. I am sure Gwyn is appreciative on the support, that you gave her.
Regards Barbara,
Quite correct Gwyn.
Everyone is obligated to familiarize themselves with the Terms and Conditions of the site prior to posting.
Whilst we are sure no insensitivity to the O.P. was intended we had 3 abuse reports on the post in question and therefore deleted it.(5 reports leads to an automatic ban from the site)
For clarification sake we will consider any promotion of non licenced drugs to be against the T&C's of the site, and therefor qualifying for deletion.
We have no wish to stifle debate and the sharing of experiences. It is different to say 'I tried X and believe that it worked for me', but not acceptable to say 'You should try X' -or 'research says X is proven to benefit' without giving the link to the evidence. One is sharing experience, the other is providing unqualified medical advise or mis-reporting/promoting unproven treatments.
We respectfully remind members to consider carefully the impact of their comments in particular when it may lead to anxiety and distress to the original poster.
The are hundreds of women out there tonight fighting this disease with every fibre of their being and alongside them thousands of worried loved ones. The last thing any of them need is doubt that they have had anything other than great care, or have chosen anything other than that which has been (proven to be) a benefit.
Anyone interested in Alternative treatments can access information on other sites designed for that purpose (Please ask and we will happily signpost)
Anyone who has a problem with this can take it up with us directly by emailing ovacome@ovacome.org.uk.
There many more chemos eg. Gemzar Navelbine etc. But also radiation therapy
Extreme joint pain 4 weeks after final chemo treatment, can any one help?I need help !please reply if you can .mum has ovca stage 3c diagnosed May 12. She has had chemo 3 times.
Can it really be dealt with that quick?
I can start packing......
Hi I was wanting to ask does anyone know if they remove the initial tumour and say you are OK now is there a chance of reoccurrence quickly
