Hope even when diagnosed stage 4

I was diagnosed with stage 4 with lung spread following an episode of pleural effusion 4 years and a Ca125 of over 6000. To cut a long story short I was given a terminal diagnosis with palliative care only. Lucky for me I saw a wonderful oncologist who commenced taxol and carboplatin chemo. I responded and had surgery half way through(once said to be a waste of time). To date my CA125 has remainded stable at normal levels. I just wanted to share this with anyone else who may be facing this and to say hang in there, there is hope. I am nothing special, not brave or religious but I give thanks to God to be so lucky.

[Hidden]

Brilliant!

Thanks for letting us know - it's so important to share the positive.

Live long and happily.

Isadora

[ScardyCat40]

Thank you for sharing that

[Hidden]

Great News,

Wishing you lots of healthy years.

Kefi

[Hidden]

Thank you for that. I was diagnosed Stage IIIC and have been in remission since January 2010. I thank God too.

[Fitzy]

Great news. Just what I needed today. I've been in remission since Jan 2010 (stage IIIc) but recent scan has shown up 2 slightly enlarged lymph nodes in groin. I'm feeling fine so have been advised to 'see how things go', which is not easy but I take heart from these uplifting comments on Ovacome. Thanks ladies!

[MargaretJ]

I was also diagnosed at stage 3c. I was clear from March 2010 until this month. CA125 levels are rising again and I am about to resume chemotherapy with carboplatin alone (the taxol I got with it last time resulted in neuropathy in fingers and feet) and I am joining the ICON6 trial because it means more detailed monitoring and should help women like me in the future.

[Fitzy in reply to MargaretJ]

Hi Margaret - were you advised to go on the ICON6 trial by your oncologist, or did you find out about it yourself? I'm going back to see my oncologist in 6 weeks time so could raise this and ask if I would be eligible.

[Jane in reply to MargaretJ]

Hi, How high were your levels of CA125 before the decision to start chemo again?

[MargaretJ]

My Oncologist in York suggested it and the Trial is run from Leeds which is where I had my original chemo. As it is one of the top cancer care centres in Europe I was keen to go back there for further treatment.

[MargaretJ]

Should have said you have to be considered suitable - there is a lot of info on the web.

[dianesayers]

Hi: I also was diagnosed with tage IV ovarian cancer in 2005 - had a collapsed lung - and after three months of chemo had an operation to remove tumour then another 3 months chemo - then 4 and a half years later it came back in the lymph nodes - then had radiotherapy - again last year I had more carboplatin - am now being checked every three months. I still have lymphoedema. Feel slightly sick - get very tired but I am still here. There is hope for us - my name is Diane and it is good to talk to anyone who is experiencing the same!!

Good luck to all ladies. Diane

[Hidden in reply to dianesayers]

Hi Diane, I was similar to you,I had a collapsed lung from the pleural fluid. It is so good to share with someone who understands. This is the first time I have talked about it in 4 years. I have little close family left and my husband is not well himself so I try to keep life light hearted. I just thought it there might be somebody out there who might take heart from my situation and it is good for me to share as well. I sincerely wish you the best and thank you for answering me, good luck to you as well.

[egidio in reply to dianesayers]

My friend Maria is 67 years old ,stage four ovarian cancer with basal right pleurisy.After cytoreductive surgery- april 2016-and platinum chemotherapy plus bevacizumab- current maintenance- she is in complete remission at CT .Can she heal from that cancer?.Now ca125 is 10

[Sunfleury-UK in reply to egidio]

Hi Egdigio, you've commented on a thread which is 6 years old (it's easily done!). Do please post a new question as that way you'll (I'm sure) get lots of support and comments...

Unfortunately many who have posted here are no longer with us....

Best wishes, Sx

[dianesayers]

I forgot to say that it has gone to the lung but I am being closely monitored.

[Jane]

Thank you for this. Did you change anything in your life after treatment? Diet or anything else? I am being monitored now as I have raised CA125 (47) straight after treatment for stage 3C.

[Hidden in reply to Jane]

Hi jane, not really. I didn't drink or smoke anyway and my diet was and still is just ordinary reasonably healthy with smattering rubbish now and then. The main change for me was having to give up fulltime work as so poorly at that time which I think in retrospect was the best thing as was stressful job.

[dianesayers in reply to Jane]

Yes I had some advice to try and cut down on dairy products - I don't know if it did anygood - but I am drinking soya products instead now.

[MargaretJ]

I was feeling smug because the chemo and op last year went so well. My CA125 was 11k at diagnosis then 6 after treatment. It started going up in Nov (30) feb 200. The new tumour is on the site of a post op abscess! I am starting chemo again next week.

[Jane in reply to MargaretJ]

Sorry to hear that Margaret, what a range of numbers. Are you having the same drugs less than a year after last time or has a year gone by? Good luck for next week.

[MargaretJ]

I am not getting the Taxol this time as it caused some neuropathy in fingers and feet that has not completely gone away. I feel reasonably positive and am preparing to make this a part of "normal" life - whatever that is. I know that the week after chemo I get very tired but last time I was like someone on speed for weeks 2 & 3. Can't say I am not nervous though!

[Hidden]

As long as there is chemo there is hope for us all.....I had OC in May 2007, with an op in July, chemo straight after then 12 months remission before it came back. I have just finished cycle 4 of my 4th lot of chemo, (different drugs each time - this time 5 days a week every 3rd week!) due to reactions, and my count is on the way down and the mid way Ct scan showed no further growths, and what there is shrinking, so I hope I might have a clear summer, when it gets here. All any of us can do is stay positive and take all the opportunities we can to life our lives to the full. I am off on a cruise next week (no insurance!) for my 60th birthday that I never thought I would see. I have read the books on healthy eating, and try to eat healthily, keep my antioxidants up, drink green tea when I think about it, and take any advise from my local cancer support group that I thnk is helpful.

Good luck

PS ask your GP about tablets for neuropathy as they can give you something for it. I only found this out 4 weeks ago after having it for 2 years! I was told the onc treat the cancer and the GP do the side effects of the treatment!

viv

[Hidden]

I was diagnosed Stage 4 back in April 2010. Had extensive surgery and then 6 lots of carboplatin and taxol. It's good to read these comments from other ladies it's keeps me positive, but does this feeling of fear ever go away. I am scared every time I have a twinge or feel a bit sick. My next oncology check up is April but this time they are not giving me a blood test which is very scary. Is this normal? How will they know if it has come back?

[Hidden in reply to Hidden]

Hi Chris

I identify with the feeling of being scared 100%. When all said and done it is an enormous thing we have to live with.Every ache, pain,twinge, any unwell feeling however mild brings an automatic feeling of fear and trepidation. I think that it would be abnormal if we didn't. I have a Ca125 blood test and never a scan but know of people who have regular scans. so I suppose every patient has different monitoring. All I can say is I understand how you feel and it has been good for me to share my these feelings with someone else. I was given a survival time and the first consultant I saw wasn't even going to operate.However 4 years on I feel better than ever. Take care and I would like to keep in touch with you if you would like to. My family and friends all say I am "strong", "positive" etc but inside sometimes I'm like jelly and I appreciate someone who is in the same position understands how it is.

[Hidden in reply to Hidden]

Hi Northern Girl

Your blog has given me lots of hope. I have the same experience, everyone tells me I'm strong and positive, I guess it's their way of keeping the good 'vibes' going. Trouble is you then feel you can't really tell them when you're feeling low and scared. But hey, it's only a 'blip' and I have gained lots of positives from a bad experience. One being I have cut my working hours and now only do 2 days a week (more to do in life than work!) and the feeling of freedom is fantastic. Especially now the sun is beginning to shine. My next appointment with the Oncologist is April 8th and I will be asking why I am not having the Ca125 blood test, it's kind of like a 'comfort blanket' isn't it? I would love to keep in touch and chat with you. Take care x

[Hidden in reply to Hidden]

Hello again Chris

Thank for you kind reply. I have been so pleased with the response to my blog and the feeling that " I am not alone" has been so good for me to. I have never done this type of thing before but I was thinking after my hospital visit last week that I was lucky and that if that just one person could gain anything positive from my experience however small then I should do it. I went on ovacome looking to see if there are any local support groups but I don't think there are but I have found so much on here it has meant so much to me. I still feel like it is like "waiting for the axe to drop" so to speak, as we said it always at the back at your mind but not always easy to share your feelings with loved ones. Thanks to everyone who has replied, you all feel like new friends.

[Eleni in reply to Hidden]

Hi there.

I sometimes feel I am becoming a hypochondriac as every little ache and pain 'grows' in my mind - so I do understand. I have to stay postitive though and despite the horrible side effects of chemo, just think that if I'm feeling bad then the cancer cells will be feeling worse!

I'd be surprised if oncology aren't doing a CA125 test for you. They may just not be sharing the results with you - so ask them. I didn't think my CA125 levels were known but asked and low and behold, they are in my notes. I have been told that they don't use them as the only and most effective measure though but go by the CT scan as the best information. Hope that helps.

[Eleni in reply to Hidden]

I have always been a 'tough cookie' and still do have a very determined spirit, but totally understand what you are saying. There are days or times druing the day when I have such terror of the cancer coming back... Hearing about success cases and long survival times are so encouraging. Thank you for sharing your story.

[Jacks150]

Hi there,

I hope you don't mind me joining your thread. I have stage IV ovarian cancer and I am half way through treatment. I had a large tumor in my tummy and it had spread to the lymph nodes in my neck (I could feel a large lump above my collar bone) and under my arm. They also thought it had spread to my left breast (athough biopsy was in conclusive).

I was diagnosed in October and my fiance and I decided to get married in December before I started treatment as I had been given a really bad prognosis and was being treated as palliative care.

I had 3 chemo's with Taxol and Carbo which reduced my CA125 from 4500 to 2100 and the tumors reduced a lot. My oncologist also now doesn't think the mass in my breast in cancer as there was no change after the chemo. Great news but bang goes a breast reduction on the NHS!

At the end of February I had a total hysterectomy and omenoctomy and the result from that was really good. Large tumor on right ovary and no spread anywhere else in my tummy. Uterus, other ovary and omentum all negative for cancer.

The lymph nodes under my arm now appear clear and the lump in my neck (which I can no longer feel) has reduced from 3.5cm to under 1cm.

I started chemo again yesterday with two more to go to try to clear any left.

I am really hopeful that I can beat this as it has gone better than I could have imagined. It really helped me reading abut you as your story seems so much like mine and 4 years on you are still heathly and well.

It really helps reading about other ladies experiences. I have kept very positive and strong but you do have down days don't you and funny enough I seem to be feeling more down now my prognosis is better. I wonder if it is my way of protecting myself in case everything goes pear shaped or just the fact I am weaker after the surgery.

Good luck to you and if you would like I would like to chat further.

Jackie

[Hidden in reply to Jacks150]

hi Jackie

I would love to chat further with you. Your experience is so similar to mine. I had on 4 of 6 cycles of chemo and my CA125 had dropped like yours to half when they said they would operate( which was considered to be too late to be of any use in the beginning). I also had a TAH/BSO/Omentectomy and then completed two more cycles of chemo. I started all this in Feb 2007 and finished in late 2007.I found my lowest point was when I started the second lot of chemo after the surgery. I think chemo, then major surgery, then chemo is one hell of an act to deal with and it sounds like you have done very well as it is. Wishing you all the best, please chat again if you feel you want to.

[Jacks150]

Hi Thanks for your reply. I would like to chat further but I am beginning to feel unwell at the moment so can't get my head roun d things at the moment.

I get achy joints and muscles for a few days and some nerve reaction but this should finish by early next week.

I will chat more then please.

Thanks Jackie

[Hidden in reply to Jacks150]

Hi Jacks

Thinking of you and sending good thoughts. You can get through this and beat it.

[dianesayers]

I have been following your blogs and find them quite comforting - I too am now waiting to go back to the oncologist to see if my lung has improved or got worse!

I feel sick in the upper abdomen most mornings but funnily enough it improves when I get up and start moving around! Keep the comments coming they give hope and comfort to us all!

Diane Sayers

[Jacks150]

Hi Northern girl,

I was reading through the different threads and realised I had never got back to you. Sorry about that. I have had a tough couple of months. The last 3 chemo's have affected me more since surgery. I also had a reaction to the last lot of pre meds. I came out in a red itchy rash all over that lasted for 4 days. It drove me round the bend. I told my husband I looked like a bald beetroot on legs!!!

I have finished all my treatment now and am just waiting for my scan on Thursday and to see my oncologist on the 20th. As you can understand I am terrified about the results. My last CA125 was 75 which is still above normal but I have just had a blood test to see where it is now after my final treatment.

I am so worried that my blood results are still not back to normal even though my specialist nurse keeps saying not to worry about it. I should get my new result next week.

You are an inspiration to me as our diagnosis and prognosis were very similar. If you can beat this then so can I. I have booked myself in to do the race for life at the end of June to help in some way to both pay back cancer research for keeping me alive so far and a target for me to regain my energy and get my life back on track.

It is very hard to explain to people that I somehow feel more worried now than I did before. I have two young sons ( 8 & 10) and worry that they think everything is okay now and I will be better forever. I have been trying to tell them we don't know yet it may come back but also not to worry about it all the time. Even though I am worried all the time at the moment myself. I expect it gets easier the longer you are cancer free and as I said I still don't know if I am in remission yet - but very hopeful.

I won't waffle on any more. I hope you and your husband are well and enjoying life. Maybe we can e-mail again.

Jackie

[Hidden in reply to Jacks150]

Hi Jackie

This is so spooky as I haven't been on this website for ages and for some reason logged on tonight and your blogg was there. I do identify with you and I still get very scared. When I said to my GP that I was paranoid, he said who wouldn't be! The last 2 chemo I had where the worst and I also found it harder to deal with than the surgery. I understand what you say about worrying more now, it is as I said before, a lot to live with and however supportive our loved ones are, we probably try not show the full extent of our worry. I have heard from a few sources as well as this site about long term survivors in our position 9 years,13 years and 20 and I'm not just saying that I promise.There is more of us than you think, I was surprised but pleased to hear it. Take care, pleased to hear from you anytime. I routing for us both,

Cas

[Jacks150]

Thanks for you reply Cas.

I will let you know the outcome of my tests. I have got everything crossed that I will be in remission. Bit tricky walking though with crosses toes!!!!!

Speak soon Jackie

[Jacks150]

Hi Cas,

I got the result of my scan today. Bit mixed result no further tumors in abdomen but still 2 small Lumps in lymph nodes in neck. Ca125 59 so still not normal.

I asked if I was in remission but they said they don't say that any more just it is under control.

I need to go back in 3 months for next check up so I now start the waiting game.

I was very disappointed that results not better and can't seem to be happy that I have got so far already which a much better outcome than was expected 6 months ago. Maybe time will help.

I feel drained and depressed and can't seem to get my positivity going again.

I am going on holiday with the children tomorrow so hopefully will have a great time and will come back relaxed and better in control.

Thanks for being there for me and sorry to sound off about my depression. I hope you and your family are keeping well.

Jackie

[parvinc]

hi jackie,

i am in a similar position to you with my first three months check up this week. i understand how you feel as i felt very depressed after finishing my treatment. i am also very scared about it coming back and worry about every twinge in my body. enjoy your holiday with the kids and take each day as it comes. take care x