Ovarian Cancer Stage 4: I'm relatively new here... - My Ovacome

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Ovarian Cancer Stage 4

Darbost
Darbost
45 Replies

I'm relatively new here so I hope I'm posting correctly. I was diagnosed with stage 4 ovarian cancer on December 26, 1017. Underwent a six hour surgery on January 15, 2018 to remove 11 organs or parts thereof. Surgeon said she would only operate if after exploring she felt she could get it all. She said she was "beyond, beyond, beyond delighted that she removed all of the cancer. I started chemo about 5 weeks later. Fitful start since first drugs caused anaphylactic shock, second treatment the following week caused another allergic reaction - EXTREME muscle spasms in my back (I'd rather have child birth with no medication). Administered again about 15 minutes later and everything was fine. Finished treatment in July. I had 3 week follow up with my oncologist who said I was in remission. 3 month follow up with the surgeon who said everything looked fine. Follow up schedule with my oncologist on Monday (had a CT scan last Tuesday) and will have blood work (CA-125) on Monday also. I feel like I was given a death sentence and it's only a matter of time before it returns with a vengeance. Anyone else have Ovarian cancer that was this extreme and not had it return? If it did return, how long before that happened and what was your experience ridding your body of it again? I hope these are not too personal but I feel like a ticking time bomb just waiting to explode.

45 Replies
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lyn1987

I know exactly how you feel. I was diagnosed with Stage 4 in June last year. Had big op and chemo. Surgeon said afterwards it was not as bad as first thought and that I was NED. My CT Scan after I finished chemo was disease free, and although my CA125 sits at 44 my oncologist says it is nothing to worry about, easy for him to say. I am now on watch and wait, my next CA125 will be at the end of February and if raised I will have a CTscan. The waiting is doing my head in, I realise I am lucky to have got thus far and I am very grateful to my fabulous surgeon and his team, also my Oncologist who got me through my chemo relatively unscathed, but I am terrified it will come back and can't help thinking I should be taking preventative measures. I am trying to not think about a recurrence and take one day at a time, enjoying my treatment free time to the max, we have even booked a holiday for May, cos its gone for good hasn't it??? I hope you find your peace and enjoy your remission, you deserve it. Take Care xx

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Darbost
Darbost
in reply to lyn1987

I think I'm further along than you at this point. My chemo ended July 2018 and I've had two CT scans since then. I see my oncologist on Monday (1/28) but I can't seem to get the thought of "I have a death sentence with this cancer" out of my mind. Big 6 hour operations prior to surgery, and to answer someone else's question, I am in the US but couldn't find a forum like this. My surgeon told me "overseas" they usually do chemo first, then surgery, then more chemo so I asked her why I was having surgery first, her comment "we at MSK believe surgery first gives the best outcome" - I really don't know, perhaps if I went to a different facility they may have had a different outlook. I appreciate everyone's comments, and it helps knowing I'm not alone :-)

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chasse10
chasse10
in reply to Darbost

I am in the US. Sometimes it is not safe enough to have surgery first (in my case) so they reduce the size of the tumors a bit with chemo, then surgery, then more chemo. If it is safe for the surgeon to do the surgery, they will do it first. I, too, was declared NED in August and worry a lot about reoccurrence. I think we all do.

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KarenArcher
KarenArcher
in reply to Darbost

Hi

I had chemo, 3 doses,debunking surgery then three more, my CA125 was 3500 on diagnosis and then streaduly went down, unfortunately the cancer got active again and the process started again, I found out I have theBraca gene and started on Olaparib 2 years ago or more,my markers are 7 - 9 and I am back at work, keeping positive and around positive people is the key for me, love Karen xx

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Stanmore
Stanmore
in reply to Darbost

Try not to worry I live in London, I had my surgery first ten brachytherapy and now having chemotherapy so I would trust your surgeon like you it’s like living on a knife edge but good luck.

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lyn1987
lyn1987
in reply to Darbost

As Chasse10 has said it is the same here in the UK, I was given chemo first to shrink the tumours then surgery then more chemo to mop up any cells left behind. This forum is full of members from across the globe and you will always be welcome. I was in a very dark place at diagnosis and this forum and its lovely ladies posts gave me hope and the strength to fight. Stay positive! xx

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Mptelesca
Mptelesca
in reply to Darbost

Hi, Darbost. So sorry you went through this. You will find this group very supportive and informative. If it helps you at all...I'm being treated out of Smilow Cancer Hospital at Yale Medical. They have the same protocol. Surgery first. In my case, the tumor had burst, so, it left them no choice.

This "death sentence" feeling is experienced by all of us...initially. Once your body recovers and you are in the hands of MSK, you will be constantly monitored. We have the opportunity of staying ahead of this chronic condition (that's how this group made me think of the OV). So, like any other chronic condition, you just stay 10 feet ahead. You may never recur. I've read enough on this to know that for a fact. I also have a friend who had stage 4 and never had a recurrence. That was 15 years ago. So, there is hope and there are miracles. We just have to believe. Don't think about a recurrence.

I was diagnosed with stage 3 in 2015. A year ago this month, my CA125 had doubled...was still under the norm of 35, but, my drs. gave me CATscan and detected a 5 mm nodule adjacent to my liver. So they jumped on that and blasted it out with 6 sessions of chemo. I am not going to lie...the first recurrence really played havoc on my mind. The thought "death sentence" was on my mind 24/7. That's because I didn't fully understand what OC was all about. I joined this group right before starting my chemo and today I feel like I'm in control. This group really lifts you.

The one thing I do know is that everyone is different. Our responses are unique. There are so many maintenance drugs out there as well as new protocols. If there is ever a good time to be in our situation...it would be now since so much is out there giving this disease an expiration date.

I wish you well. I hope you stay with this group. Please let us know how you are doing.

XOX

Marisa

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Lizjj
Lizjj
in reply to Mptelesca

Thanks Marisa for the lovely encouraging words. This really does help

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shortfriends

Dear Lynn, As always you are being supportive and positive with your replies. You are a lovely person and I hope you keep going for a long time as you and the other brave sisters here keep me going!

Love and warm wishes to you all xxx

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Purple-iris

Hi

Yes I can totally relate to the ticking time bomb ! I was diagnosed stage 4 in June 2016, needed chemo first then extensive surgery and more chemo. Was then on Avastin for a year. Am now a year post my last Avastin and 2 years since my chemo finished.

I also feel lucky that I’ve got this far and feel physically well. Count my lucky stars every day .

Mentally it’s hard once your treatment finishes, a junior oncologist I saw at the beginning of my treatment told me ‘ it will come back ‘ so I’ve had to deal with that voice in my head.

Lots of counselling and attending a fear of recurrence course through the Dimbleby centre at Guys hospital has helped. Also our rescue dog and lots of walking !

My spin on it is , we have no control on if / when it will come back and I don’t want to let this crap disease mess with my head and waste any more of my good days. We can think of ourselves as lucky, we know how precious life is and get pleasure from small things that most take for granted.

I was nervous about going on holiday as was taken ill and diagnosed out of the blue whilst on holiday in Mauritius. But have now had several trips to Italy and Spain and hoping to go a little further this year.

Glad you have found this forum and hope you can start to enjoy your treatment free days. Maybe some counselling or a support group would help, our brains take longer to heal and have been in fight mode and now need to adjust.

Love and best wishes Kim x 💜

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Darbost
Darbost
in reply to Purple-iris

Thank you so much! I will keep everyone on this list in my prayers also. They have been cautious not to say "it will come back". I asked about taking my port out but I'm hesitant because I feel I'll just have to have it put back in (which he said they could do) but it would mean another surgery. With all that I've read on the internet it seems its return is only a matter of time.

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Seasun36-uk
Seasun36-uk
in reply to Darbost

Hello again!

Just another difference in the UK (for your interest).

We don’t routinely have ports inserted - unless we have poor veins/find it extremely painful. Some ladies that have had it done think they are great, some have had quite serious infections with them. So we have our venflon inserted into a vein the back of our hands. It sounds painful, sometimes it is - but only for 30 secs or so.

Yes in UK the standard protocol for most of us is 3 chemos (to shrink the tumours: mine shrunk by half!), big surgery, then 3 chemos, followed most times by Avastin for approximately 1 year (a vascular endothelial growth factor inhibitor - to inhibit tiny capillaries from developing from possible invisible ‘dormant’ cells).

I think your appointment is today - all the best!

Linda 🌼🌻🌻🌼

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Mptelesca

Hi, Seasun...glad you still have the option there whether to have port or not. I heard from the nurses that anyone going in for treatment must have a port put in. Good veins or not. Also, I'm hearing more and more about Avastin and it's positive effects. I wonder if we have here in the US?

Wishing you the best!

XOX

Marisa

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Darbost
Darbost
in reply to Mptelesca

Once I finished chemo they did not give me options for any other treatment. Rather they said we'll follow up every 3 months alternating between the surgeon and the oncologist. I was extremely naive regarding OC and for the life of me couldn't see why I had to see the surgeon again. She said to me "you always need to see me in case you need me again" - well, that told me it wasn't a matter of "if" but rather "when". I think they do things a bit different here in the states, I don't know anyone that's been put on any of the drugs mentioned here. My last CT scan showed no new cancer and my CA-125 actually went down one from 8 to 7. The oncologist did tell me it does have a high rate of recurrence but it's easily treated. Whether that was to try an appease me or he truly felt that way I don't know. I feel this disease has invaded every aspect of my life and I'm always walking on egg shells waiting for the next shoe to drop. He advised seeing a Social Worker (which I since done) but her recommendations didn't really help. Any resources are at a hospital that is 1/2 hour away, not a long distance but I have cataracts so driving, especially in the evening, is not a good thing. I have an appointment this month with the surgeon to discuss removing the cataracts. Sometimes I just feel like, why am I bothering? I've really been pretty down since the diagnosis and treatment. They did put me in touch with a woman who had almost the same surgery and treatment I did and she's been cancer free for 8 years. As the oncologist put it "you only see the people who have a recurrence, not the ones that don't because they're not sitting in the waiting area to see a doctor". He's right but I still can't seem to shake the depression. As Lyndy says I think I'm on the "watch and wait" list at this time. Oncologist told me they will follow up every 3 months for two years. I'm only six months into that journey.

I appreciate hearing from all of you and keep all of you in my prayers.

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Mptelesca
Mptelesca
in reply to Darbost

Hi, Darbost. I am in the states as well. I live in NY and my hosptital is Yale New Haven which is 1 hour away. Up until my first follow up after surgery, I still didn't grasp what was truly happening here. It wasn't until my first follow up that my now Chemo nurse said..."you know this comes back, right?" Like a ton of bricks.

I am telling you that the depression will leave you. It will take on different forms of fear, melancholy, anger and then back to what I'm in is a NEW NORMAL. 3 yrs and my first recurrence in January 2018. That hit me harder emotionally, however when I came down off my frenzied mind blowing "I'm doomed"...I realized that ,yes, it was a tiny nodule not attached to any organ. With 6 sessions of Carbo/taxol it went away. I then, again, went through an ilogical tantrum when offered the PARP. One side of me says....hey, I'm cured...why go on a Parp? The other side says....hey, take this damn pill to keep Monster at bay.

No matter what I share with you....I know that it won't diminish how you feel at the moment. I can tell you it does get better. You will figure out what your new normal is...and it's not so bad. And, not blowing smoke, but, there's always that possibility you may never recur again. And if you do....new drugs have hit the market giving us so many choices.

Go get your eyes fixed and just enjoy the beauty of life around you. Will be thinking of you. Any time you feel down....just post here.

Wishing you the best!

XOX

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Lyndy

Hi there! You have had an enormous shock followed by a very hard path through treatment...so it isn’t surprising that you feel this way. Many cancer patients are diagnosed with PTSD as a result of the impact of diagnosis and we all live with that fear in the background. What I discovered (dx2015 stage 4 hgs OC) was that what happened to others was not a guide to my own disease. I have been very lucky...just recently I was downgraded from ‘watch and wait ‘ to stable and no evidence of disease. So no recurrence for me...yet.

I don’t really think about it much anymore between appointments...somehow I have found a way to live life and enjoy it.

This may change but for now I will take it.

There’s lots of help out there for patients who struggle with the fear of recurrence because it is so difficult. Maybe try out something that suits you and might help you to find some peace? You know the kind of thing mindfulness, yoga, counselling or perhaps find people nearby with OC that can understand how you feel? Don’t put up with feeling permanently scared, you’ve got this far so you deserve to enjoy! xx

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Seasun36-uk

Welcome to this forum Darbost. I wonder if you are in the UK or perhaps USA? There are a fair few of us who were diagnosed with Stage 4 & still here! I really empathise with how you feel. I had an Out Patient appointment recently and was told by a CNS (who is lovely & easy to talk to), “We know it will come back..”

I think that’s the 3rd time I’ve been told that & it’s hard to know where to ‘park’ this thought so that you can enjoy life on an everyday basis.

All I can say is - years ago we wouldn’t have had this ‘second chance’ of life. Your surgeon is brilliant (& mine too!). The chemo does it’s job. New treatments are coming to the fore, particularly PARP Inhibitors.

Just receive this gift of a new kind of life & look after yourself physically & mentally. As Purple Iris says, the latter is the hardest!

With all best wishes, keep going!

Linda 🌸🌺🌺🌸

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Lind58

Hoping for only the best news ❤️

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781895

Cheyann had stage 4 4B Low Grade Serous Ovarian cancer but is currently in remission and doing very well, you can follow her journey here: instagram.com/cheymarie_fit...

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citrine

I received a diagnosis of stage 4 ovarian cancer in September 2011 and I remember looking at the copy of the letter I received and assuming it meant I would not have long. I finished first line treatment in January 2012 and I’m glad to say that so far there has been no recurrence.

The best advice I received was from my oncologist who told me that whilst no one can promise the cancer wouldn’t reoccur, I should try and live my life on the assumption that it wouldn’t otherwise I would be paralysed. This helped me to concentrate on living in the moment and enjoy the life I have right now. I don’t think it’s possible to avoid worrying thoughts breaking in but I used the mantra “Doctor’s Orders, no point in worrying!” and that helped me to stop.

Wishing you all the luck in the world.

Mary xx

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Darbost
Darbost
in reply to citrine

He gave you excellent advice! I wish I could get my emotions under control.

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cathy46

Hi there from Australia I was diagnosed 2010 stage 4 had the surgery and chemo and went almost 5 years before reoccurrence Have had several reoccurrence s but am currently NED on A parp inhibitor As was recently tested for the braca gene which I have It’s a battle for everyone who has this disease but if you think of it like diabetes which is treatable and with a bit of luck you can have a good life I have learned to take one day at a time and try to stay positive at least I’m still hear sending lots of love 💗

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triplets

Hello! Sorry you are finding yourself on here, it’s a place we all would rather not be. Your feelings are normal, there isn’t one of us who wouldn’t say we are scared, it’s such a shock when you are told and then going through the treatment, then waiting for results etc. My husband was diagnosed in 2008 with stage 4 bowel cancer, already spread to his liver, in three years he had constant chemo and surgery, then it went to his lung. That was zapped in 2011. He has been in remission ever since! I was diagnosed in 2016 stage 1c2 ovarian cancer , had surgery then chemo. No sign of recurrence. I get panicky when its check up time, sit in the waiting room wringing my hands, heart thumping.....my husband said to me at my last one.....Anne, it was there, removed, treated, it’s gone so there is nothing to worry about. That’s him. It’s the right attitude we should all try to follow. Why let it spoil our days? We none of us know how long we will be here...our son aged 14 collapsed and died in our garden, no medical explanation. He would be 40 this year. So enjoy every day, it does get easier I promise. Much love. xx

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Darbost
Darbost
in reply to triplets

I am so happy for both you and your husband. I must say my husband is far more positive about this than I am and I'm very grateful I have him. I would not have been able to do this on my own.

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Mptelesca
Mptelesca
in reply to triplets

Of all the fears we are all faced with...you faced the most unspeakable...losing a child. You have inspired me to be positive....you and your husband have certainly handled quite a bit and can still give such positive energy to the rest of us. God Bless!

XOX

Marisa

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triplets
triplets
in reply to Mptelesca

Thank you....there is always light at the end of the tunnel. Just look for it. xx

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Hi I am also stage 4 diagnosed in Aug 2014! I had some remission but like all of us stage 4 folk live wit h the sword of Damocles hanging over my head. All medical help concentrates on the disease and not us the patient. Here in the UK the palliative system is good though. You might want to look at the site cancer.net it has an enormous section on survivorship including ptsd as it relates to cancer diagnosis.

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Seasun36-uk

Thank you for this website - it looks good

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Darbost

Thanks for the website, I'm going to look at it this evening.

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Lias66

Hello,

I’m writing not because I haven’t recurred but because I have. It’s three years since my diagnosis at 3c with high grade serous, i’m still working although part time and have managed to do that through second line treatment.

Although I felt let down by my own body when I realised I was in recurrence I saw so many post on here by ladies who were having chemo to manage their condition and still managing to live a full life in between.

Recurrence is not inevitable but I found it hard to get out of my mind. One of my boss at work used to say “focus on the things you can control”, I tried to do this but did find it hard, it got easier as time went on.

I read books like Erkhart Tolle’s The Power of Now, mindfulness etc. I’m not a big fan of self help books but there were some techniques that still help me relax. I think a few weeks ahead And occasionally a few months when I’m booking a holiday, off skiing in a couple of weeks. Last year I bookended treatment with family holidays, making the most of my 13 year old son before he decides he’s too cool to come with us.

I wish you all the very best, this disease Seems to take a different path with all of us but we are all in this together and this can be a huge help.

Lisa xxx

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Lockygill

I was diagnosed in July 2014 with stage 3c/4 and had debunking surgery and chemo. Although I have a stoma now, I have never felt better and am coming up to 5 years clear. They originally said that they would try and get me to 2 years so I have exceeded expectations. I think that we have to try and believe that the cancer has been removed and that we just need get on with our lives. I used to think about it all the time, but now, although I think about it, I am reminded how very lucky I am to be alive and live every day with that in mind. My husband left me after 38 years of marriage, just after I started chemo but I have met someone new and have a whole new happy future. I wish you good luck and hope that my story helps a little.

Gilly x

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Darbost
Darbost
in reply to Lockygill

I'm so very glad you found someone who loves and cares for you. I found the support of my husband and the prayers of people across the country helped me get through the surgery and chemo.

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Kmastro

Hi, I am also stage 4 at an being treated at MSK. I had to have chemo first because I had blood clots in My lungs and they needed to resolve first. I was diagnosed September 11 2017. Which of you live in NY is already a very somber day. I am now 1 year NED with my CA125 sitting at 8.

My advice is to try an get back to living as best as you can. Go to the gym, eat fantastic food, travel.

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Darbost
Darbost
in reply to Kmastro

Are you in the states, sounds like it from your reference to 9/11. I had my surgery in New York but my treatments and doctors are located (at least part time) in Middletown, NJ. I have no idea what NED means but I've seen it mentioned on here frequently. My CA-125 was 8 when I saw the surgeon 3 months ago but 7 when I went to the oncologist last week. He told me CT scan every six months unless my CA-125 doubled.

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Kmastro
Kmastro
in reply to Darbost

Yes, same as you. My surgery was done at MSK nyc but bee office is in Middletown, nj. Who do you see? I go to dr. Jewel. Love her

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Kmastro
Kmastro
in reply to Darbost

NED means no evidence of disease. You ca125 looks great.

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Maxjor

Hi Darbost--you have gotten such great input already but let me join in with others---I am similar to Purple Iris in that I was diagnosed June 2016 with Stage IV and the first thing the surgeon (at MSK also) said to me was "its everywhere" and each day was another day of discoveries that sent me into a tailspin of writing my good-byes and completely freaking out. I had a lesion near my lung that they said had to come out before anything else and it turned out to be OC (self contained, no affect on surrounding tissue--just this mass all by itself "up there") and then, within two weeks of that, I was told I would start neoadjuvant treatment--so chemo first --3 cycles, then debulking (if scan showed I was ready, which it did) then TWO WEEKS recovery (I wanted 6 weeks!) and chemo again. At the end of it, I had a ca125 of 5 and no disease. But my fears, anxieties, etc. got worse after treatment was done and I wasn't doing anything. The anxiety of it coming back was high for me and fear, the waiting for test results, etc seem to be worse at times than treatment. But---I work out often, I work close to full time , I travel, socialize and for me, life really goes on fairly normally. I DID have a relapse--7 months later and I don't want to worry you but once the shock of relapsing happened, I think I handled it well and found it easier than Frontline (Frontline was the standard Carbo/Taxol but the relapse treatment was Carbo/Doxil or Caeylyx as it is called in the UK). After that, I went on a PARP inhibitor and going on my 10th month with no other treatment. They are pills --so no chemo-- and the only time I go to MSK is for testing or check ups with other docs. PARPs are fairly new and other effective drugs are on the horizon. Hope is not a bad thing and we are all different and capable of much more than we might realize. As many say, every person has a death sentence or as I have read on here--a "sell by" date and no one is guaranteed tomorrow. Someone posted that their oncologist got killed in a skiing accident and he wasn't sick! You have to try to live your life and compartmentalize the worry and fears (tell yourself you will allow yourself to think about it for 10 or 15 minutes every day or two days and then push it out of your mind) or you allow a cancer diagnosis to take over your life and take away your joy, your ability to live each day to its fullest. Of course there are ups and downs but focus on the fact that you are in remission and not what might happen. Hard to do, trust me I know.

You are not alone. We're all here for you.

oxoxo Judy

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Seasun36-uk
Seasun36-uk
in reply to Maxjor

Thank you Judy xoxo

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Darbost
Darbost
in reply to Maxjor

Thanks Judy, I went into anaphylactic shock on Taxil (spelling?) so they went to Dox and I had a different allergic reaction. Oncologist said with the type of allergic reaction I had to Doxil they like to wait about 10 minutes and try again because the body has usually expended everything it has on the first attack so there's nothing left. It worked. I don't know what's left if I have a recurrence. They did put me in touch with a woman who has been cancer free for 8 years and had almost the same surgery and treatment I did so it does happen. I know how illogical it is to worry about it but the cancer somehow made death a very real thing. I know we don't live forever and we're not guaranteed our next breath but this brought about emotions I didn't know I had. I'm exploring some coping mechanisms, we'll see how that works.

I'm amazed at how rampant OC is and very glad for the support of a group like this.

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Katmal-UK

Hi I was diagnosed stage 3 in 2007 with a prognosis of 'a couple of years'. Took me a while to get my head round everything, but I do think to myself that we all have a death sentence, nobody gets out of life alive just that we are forced to face our mortality. I think what I am trying to say is try not to worry about the what ifs, enjoy the here and now, that all anyone has. Sounds like I'm preaching lol. Big hugs, Kathy xx

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Margiedolly

Wow! May The Lord shower you with blessings, for what you have been through!

I had ovarian cancer covering all my abdominal organs as well. The cancer kept recurring for six years.

Then came Olaparib. I have been on this medication, and am beginning my fifth year of no recurrance.

It's a PARP inhibitor drug which works especially well for BRCA2 people.

I would suggest asking your doctor about it and other cancer inhibitor meds to avoid recurrance.

Best wishes!

💖Margaret

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Darbost
Darbost
in reply to Margiedolly

I am going to ask about this on my next visit. Neither my surgeon or oncologist has ever mentioned the drugs spoken of here. Thank you all for the encouragement!

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roshropshire

I was diagnosed with stage 3/4 OC Aug 17 , I was in a state in the May and NOT referred then, BiG mistake. I had 2 Chemos with avastin and then 1 more chemo before an op. they managed to remove the cyst but not perform a hysterectomy because of damaging other things. After 6 chemos ca 125 came right down and I continued with Avastin but that didn't work 6 months later. Just finished 6 more Chemos(Caelyx, didn't lose my hair this time) ,feeling good but CA 125 hasn't changed much. Moving to Christies Manchester for treatment and waiting for CT results to see what happens next. Still hopeful, maybe on a trial. Keep positive, if they've kept me going this length of time then there is hope they can keep me going on new drugs,

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MH500

Hi and welcome Darbost

I’m so sorry that you are going through this, but you e come to the right place, we all understand.

I was diagnosed 3c in October 2016. Had 3 chemo, huge surgery and 3 more chemo and then 8 Avastin. I am currently in remission...22 months since last chemo.

I hate playing Russian Roulette every 3 months at check up and CA125 time, but I’m back at work and travelling loads and generally enjoying life.

Life is not forever for anyone, it’s just that we have our morality in closer focus.

Take care, Marian x

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Darbost
Darbost
in reply to MH500

Yes, this certainly was a wake up call for me. Logically I know worrying is silly I just am having a hard time keeping my emotions in check.

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