diagnosed advanced peritoneal in Dec had first session carbon/taxol second one next week then ct to see if surgery possible

[clunn]

Still seems like a really bad dream. Gone from normal everyday life to doubt uncertainty fear of the unknown am normally a planner like everything organised can't do that now as dont know what's going be happening one week to the next

[Seren18]

It does seem like a bad dream when they deliver the news but after that things get better and you can see a light at the end of the tunnel. Before you know it something positive will help you along.Keep strong!Gillx

[Hidden]

I have advanced disease .. Peritoneal too. I thought my world had ended when I was told. Now my life is about raising awareness of the symptoms. I struggled too but friends here helped me to a sense of wellbeing. Love to you x x

[clunn in reply to Hidden]

tbanks Tina I know what you mran I kept ignoring stomach ache putting down to one weight loss did not reaply notice as was dieting anaway working full time and wwith kids and grandchildren kkeeping me busy pushed the symptoms to one side x

[wendydee]

Hi! Glad you got in touch, but sorry you had to........you will get through it all.

There are loads of lovely friends on here, just post when and if you're feeling up/down/unsure, whatever. Have you had a loo at the Ovacome website, it's on ovacome.org.uk There are details of fact sheets on there (under resources) and a helpline number you can ring to speak to a nurse who will understand completely what you're going through. A lot of women have found that mindfulness meditation helps them to cope. Maybe you'd like to look at an app if you have a smartphone, or have a look on google. In the meantime, take care of yourself, build up some strength through healthy eating, a little light exercise (if the rain stops!) and keeping as calm as you can.

All the best, you will cope and get back to being organised, just not quite yet

[clunn]

Tbanks for the replies really helps being able talk to others going through the same as don't want talk over my worries and fears with my children as don't want to upset them x

[Dyana]

Hi ,

I had grade 3c PPC diagnosed in June 2012 , 3 carbo / taxol , surgery , 3 more carbo/ taxol. I'm ok ! I was lucky as they removed all disease and am fine at the moment. I had exploratory surgery after 3 chemo to see how much they could remove and luckily although very extensive it could be removed. I found that the weeks up to surgery were really difficult as nothing was very certain and it was all appointment to appointment and not knowing. I tried not to think ahead to far , maybe to the next chemo , and then oncology appointment etc. Like you I'm a planner so difficult. You will get lots of support here and I feel all thoughts , fears and feelings are normal . ,take care , dy xxx

[clunn in reply to Dyana]

HI dyana how long after your 3rd cycle till your surgery

[Dyana in reply to clunn]

About 3 weeks , I had a CT after the 3 rd chemo and then an quick exploratory before the operation a week later , then 4 weeks later started chemo again? I hope that helps , I think that the regime is fairly standard . Pm me if you want to know more . I have a lovely community nurse who was always able to answer my questions .. Remember that ovacome have a support line which is so helpful , xxxxx

[JacJac]

Hi, I had the same diagnosis (August 2012)and subsequent treatment regime as you have been offered. Yes it is terrifying to get this news and we all handle it differently but needless to say the support you get here will be invaluable. I waited 4 weeks after my 3rd cycle before undergoing surgery and then a further four weeks following surgery before starting the next cycle. I am a year out of treatment and it is looking as if I may need to start treatment again although not just yet....Anyway its been a good year and I still feel great. Please post with any questions I can assure you that someone on here will have experienced something similar and be able to offer guidance and support. Hope all goes well and please update. Good luck and take care of yourself. xxxJacJac

[Solange]

Sorry you're in such a bad place at the moment - it's such a shock to be diagnosed. I so know how you feel about not wanting to talk to the children and worry them. Good luck with your treatment and op if you have one.Try and keep positive'

Love and hugs, Solange

[cerise]

Hi there, I was also diagnosed with this in April 2012 and then had same treatment. After 12 months clear, it has returned, am back on chemo but feeling okay and looking forward to another long remission. Take all support on offer, be kind to yourself. Try to eat well and do even small amounts of exercise if you can. As has already been said, this site is invaluable. All the very best to you x

[iamstillme]

Hi Clunn sorry to hear of your diagnosis . It is such a difficult time but hopefully here you will find all the help and support from all the lovely ladies here who are in a similar situation to you. I too have ppc diagnosed in march 2012 . Had x 3 cycles of chemo then surgery followed by x3 more chemo. Know how hard it is when you have children. Mine were 16 and 15 at the time. Please feel free to pm me if you have any specific questions. Wishing you well wishes for your treatment

Ally xx

[harley]

Hi Clunn, I too had PPC diagnosed in 2010, in fact it was during the debulking surgery after 3 carbo/taxol that they discovered it was PPC and not OC, ovaries were fine. I think it was 3 weeks after 3rd chemo and then 3 weeks after surgery that chemo restarted. It is an uncertain and worrying time but with support from friends and family you can find yourself in a good place where you make the most of each day. Since 2010 I have undergone 3 cycles of chemo for recurrences but we are still planning what we will do when we retire. Stay positive. Good luck with your treatment. xx

[Possum56]

hi Tina B it's possum56 ,I've forgotten how we could possibly have a private conversation although Fernanda knows my story and it is up on my ,damn I've forgotten ,that's right my profile .I've told my story fairly bluntly and I don't think I made it private so your welcome to access it anytime . I'm in Australia so it's a bit different here maybe but I just didn't want to influence anyone in their choices as I guess maybe mine isn't the usual choice after reading a fair bit of the website . Your welcome to ask anything you want but I guess there were /are a couple of reasons why I made my choice .I have M.E/Cfs 9I happen to believe M.E is (know) is a serious immune disease and there is no way without constant support I could even try Chemo in any form as my Immune system is pretty seriously compromised . I can't tolerate more than a day or two of prednisolone (steroids)also I have no family support or very little ,I have an 18 yr old sort of living with me and he was pretty well off the rails before and is not coping at all now ( i am trying to get him mental health help as a priority but it is affecting both the cancer and M.E badly with my health ) Also I was not treated well here at RNSH my surgeon did get as much as he could out but I was stage 3/4 already .In fact he said if he had known I was not going to have Chemo he would not have operated on me . I though on a pension paid privately for an "onc " who also specialises in M.E and the figures and results and symptoms really made it a "no brainer " . I was diagnosed 20th March last year and have been well mostly after recovering from surgery that debulked ,hyso'd and basically was what they call radical surgery.Up until lately I have received very little support medically other than good pain relief ,it seems when you say no Chemo you are off the support list . Luckily now I'm still fairly well though I'm pretty full of tumors etc from belly button down and its now affecting my bladder .Very painful to pee ,and I'm trying to arrange care of animals and so on and choose whether i want to start intervening ,catheters etc .I've met with the Palliative care team and they seem fairly comfortable with the way of chosen but I didn't get to go on the holiday I so wanted so things never go as planned and you have to roll with the punches much as you can . I would love to meet people who have chosen the same as myself but we are all unique .The type of O.C I have has also not been researched in Australia I understand in about 20 yrs ,so I hope the damn Dr's take advantage of an untouched research body .They certainly have my permission to look at every bit and I wish they'd take advantage of learning what is happening to me now . Anyway I've talked too long ,prob been too forward /open .Forgive me if I have . All my best and huge hugs love and may your choices always be your choices and may you all be surrounded with love and care . Penny (possum 56)

[Possum56]

Hi TinaB ,

It's ok if you don't find it offensive ,I'm over being private about my story .Do u find it offensive or scarey or upsetting ?

[Hidden]

Hi Penny

I'm not offended or scared at all so don't worry about that. It is upsetting, of course but only as much as it feels to meet anyone with this disease and I do choose to spend my time here. I can understand your position. The only thing is, I would urge you to give Ruth or Susan at Ovacome a call. I'm sure they may help with an additional ear and they do have a lot of experience. Their number is 0207 299 6654 . I don't know much about your pre-existing illness or how it relates to treatment but I'm sure they will have. Meanwhile, love to you .. T x x

[Possum56]

I totally agree and I'm coming up to my one year anniversary .I totally support your decision whatever ! you have chosen ,.U, me ,we ,us are all incredibly brave but being brave doesn't cut it sometimes ,does it ? Support ,love understanding ,answers true ones to our questions that's the only thing I can think we survive on .when you have a compromised health system already , as I have had for near on 20 years ,you are already fed up with you sick of being sick . Your family is sick and angry at you for being sick (this is purely a comment on my family ,honest)When the Medical profession doesn't listen to you and treats you like a dumb child ,boy ,that gets my goat ! How can I know what is available ,what is going on if they don't treat me as a person and fill me in on "what" they do know ! .Yet we have to have hope ,some sort of hope , medical hope ,family hope ,and a very strong belief and love for yourself .

I do try and laugh at the small joys in life and sometimes I think it must be the biggest joke played on me . Anything I can think of to keep enjoying what life does give ,what you have given and meant to others .your Legacy !

I'm sure you have been a good friend ,

perhaps if lucky a loving partner ,I'm sure you have been there for friends children partners and family and community to the best of your ability .

But yes it hurts ,its sad and i for sure know I'm very ,very sad ,sometimes but why shouldn't we be .

All this is said in love ,solidarity and at times "life's a bitch " !

I hope I've chosen right for me , I hope we all get the right to choose Life with dignity not just life for life's sake . I love my kids , I dont need their anger but thats their right I gues . Lv Penny (possum56)

[Hidden]

Hi Penny.. I found what you've said really moving. Really, thanks for sharing those things with me. I really appreciate it. Love to you. T xxx

[Hilsuk]

Dear Clun, so sorry you've had this news , its such a bombshell.Hope my story helps - I was diagnosed with advanced primary peritoneal cancer in June last year which was extensive and inoperable ( I'd already had a hysterectomy and both ovaries removed 18 m before )

I finished my taxol carbo in December . This week I learnt that my PET scan was completely clear( PET scans are very sensitive ) - so chemo has removed all the tumours. ! I know I'm not 'cured' but am amazed how effective chemo has been - my ca 125 has dropped from 770 to 5 over the treatment I now feel fit and well , climbed snowdon 4 w after finishing chemo , and have been skiing .Please don't give up , I never expected to be NED ( no evidence of disease ) at the end of chemo .

Hope chemo works a miracle for you too , and surgery a success .( but if not still don't give up ! ) There's lots of ways of treating this , and some very promising treatments being researched for the future

Take care, and be kind to yourself

Love

Hilary xxx

[Hidden]

Dear Clunn,

I am sorry that you find yourself in this dilemma.

It is a shock when first diagnosed... we can all relate to this...

Sending you my best wishes for a good outcome of your treatment.

Love x G x