3 weeks ago, my mum was diagnosed with stage 4 ovarian cancer. She is a fit and otherwise healthy 58 year old who had been working full time just 3 weeks ago. The only symptom she had was bloating which we now know is due to ascites. Although she is very up and down day to day, we feel she has started to go down hill quite quickly and is very symptomatic. Doctors have tried draining off the ascites twice now and said they can't as she has numerous pockets of fluid rather than one large pocket. She was due to start her chemotherapy tomorrow but last week developed a pleural effusion on her lung due to ascites fluid. Now the chemo can't go ahead tomorrow as planned and she has to take an antibiotic and go back for review next week. We are extremely worried that this will have a big impact on her outcome overall and just want to get her started on her chemo. She has also lost a lot of weight as she is unable to eat much due to feeling full with fluid. Has anyone else had any delays on beginning their chemo or any similar stage 4 stories to share?
Thanks in advance, any response/advice is greatly appreciated.
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DellaTee
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I'm so sorry you find yourself on this forum. It's probably the last place you want to be but be assured that you'll get lots of help and support - for your mum - from all the lovely girls here.
I fully understand how your mum is feeling right now. It's a devastating blow to be told that we have cancer and it's not expected. Least of all for me who has led a healthy, non-smoking, moderate drinking and active life. I've also had four children with six pregnancies in all, so not the first candidate for ovarian cancer. I live in France which has an excellent health system but it also has its pitfalls, one of which is lunch times and holiday times. I was diagnosed on 4th July last year and was quickly seen by a gynacologist and then had the scans etc. followed by seeing the oncologist. But, then we were approaching August and the whole of France goes on holiday in August and everything virtually closes down so it was 22nd August before I had my first chemo. A full seven weeks after diagnosis of Stage 4B ovarian, peritoneum, bowel and three lymph sites cancer.
Those seven weeks were hell on earth and I was terrified most days and cried and cried until I was wrung dry. I lost weight with fear more than anything else. So I know exactly how your poor mum feels. But once I started with the chemo the fear went away. Suddenly it was someone else's problem to get me better and I became calm and focused. I didn't have the best of times the first couple of doses but eventually settled with weekly carboplatin and avastin. Even then I started to worry that by cutting out one of the drugs that the chemo wouldn't work as well. I never expected to be NED (no evidence of disease) as I have the cancer in too many places but I was told that the medics may be able to control it. I also have quite a rare type of cancer but don't ask me to name it because I don't like to delve too deeply into it. The oncologist was clutching at straws as to how to treat it.
In October I had a PET scan and was told that my tumours were reduced by half and no new sites. Could have knocked me down with a feather but put it down to the nasty drugs I'd had and was no longer having.
Towards the end of chemo my platelets were letting me down and the chemo was delayed for 3 weeks. I was devastated as I already thought that things were going wrong. After Christmas I had my last two weeks chemo. So, the point of all this is to say that on 2nd January I had my last chemo and then a PET scan and then a visit to the oncologist. My tumours have shrunk so much and some have even disappeared in my diaphragm and pelvis. The tumour on the bowel is reduced by 80% !! Everyone, including me, is amazed at how well the carboplatin and avastin alone has worked for me. I don't feel ill or have side effects and I tell every one that I am living with cancer instead of dying from it. I rarely think about it to be honest. My hair is now about 2cms long so I don't get stared at so much. A friend even said she'd pay good money to have a haircut like mine. Of course things can change in an instant but I've got three months until my next scan and I won't bother to think that every twinge or ache is the cancer going mental in me. Life, whatever form it comes in, is going to be lived by me until I can't do it any more. I'm not going to rush towards the end feeling glum and miserable.
So, please be assured that a delay of a week or two isn't going to affect your mum's outcome. I was in panic mode for seven weeks thinking that every minute the cells were multiplying and would never be eradicated. Once your dear mum gets in the system she'll have a different outlook. I used to love going to chemo each week in the end - after I got over the first two nasty doses - and took knitting, Kindle, MP3 and a big feather pillow for a sleep. I've just started on 3 weekly avastin now and hope to keep it going for a year and then we'll see what's what. I am still platinum sensitive so can go back on carboplatin at any time there's a growth increase. My CA125 (what is known as the marker) is 126 but I'm stable. You'll come to learn all these terms as you go along and the one thing you'll notice is that we are all hooked on the flipping CA125 number. But, tread carefully as it's just an indication of how the cancer is diminishing or increasing and not the be all and end all of how we actually are inside. One or two of the girls don't even bother to know about it as it can become obsessional. I freaked out when mine went up 1.6 points and thought it was time to arrange my funeral and then got the great news of being stable.
I'll shut up now and hope you can get some help from my novel. I usually write reams in posts. I talk a lot too, which explains it. Please give your mum a big hug and tell her that she is more than welcome to join us herself if she wants to know anything or just for a chat. I'm not the best one for medical information and some of the girls are extremely knowledgeable about the drugs, lifestyle, hospitals and trials. We are all in it together, good or bad, and your mum will make some lovely cyber friends and perhaps meet up with some of the girls who live near to you and go to the same chemo clinic.
This really explains how we all feel at times. It is up and down but I have so many things I enjoy and to look forward to I don’t have time to feel low for too long! Well done Kryssy. Best of luck DellaTee. Your Mum is lucky to have your support. X
Yes Kryssy what a wonderful reply...I can't add to that but wish your mum to be as well as possible. Keep us in the loop... I have the support of a wonderful daughter. Your mum is very lucky to have you xx
At the end of March last year, I was almost the same as your mum - aged 58, few symptoms, stage 4 & a pleural effusion. The only difference is I was able to have the ascites drained (3 litres). I had to wait a week or so because of Easter & my ascites was coming back. But chemo started mid-April & the ascites began to decrease. The docs said my pleural effusion would resolve on it's own, which it did. I presume your Mum must have a chest infection, having been given the antibiotics? I wish her well ❣️The chemotherapy is very effective & she will cope, day by day (with your help too 🙂). Linda xx
Hi, I have had a very similar experience as Kryssy (mine is PPC stage 3c), so I can only echo what she has said - I’m 18 months since diagnosis and have had all the first line treatments. My main tumour was in an unusual place, so I was originally sent to the colo-rectal team which meant it took longer for them to decide what I had. I went to my gp in the middle of June and didn’t start treatment until the end of August. I’m still feeling fine, although my blood marker is going back up - ‘stable’ is my current condition, I’m being monitored but am also preparing for my skiing holiday in March.
It is a worrying time, and most of us have moments when things don’t seem to be going smoothly, but with support from friends, family and the medical team, your mum will have the tools she needs to fight this. She already has you fighting her corner!
Best wishes to you and your mum - everyone here will have their fingers crossed that all goes well and hope you are strong enough to keep in touch for support and advice.
So sorry that you are having to support your mum through this and can understand how worried you are . You are all still in shock and I can remember how hard the first few weeks were after being diagnosed especially when there are delays to treatment.
I was diagnosed stage 4 whilst on holiday in Mauritius in June 2016 . Had been well the first week and then my stomach just started to bloat over 3 days until I looked pregnant . Had an emergency laparoscopy whilst there to investigate and they drained 5 litres and found the cancer . Was 54 when diagnosed and came as a complete shock .
It took about 5 weeks for my chemo to start and there was a delay as they wanted to relook at my biopsy’s at the MDT meeting . Sent me into melt down at the time but they reassured me it wouldn’t make a difference. The ascities came back , couldn’t eat , hardly walk or lay down was so uncomfortable. They tried to drain again but initially said it was too dangerous as there were pockets and not enough clearance to put the drain without too much risk . I was asked to go back 3 days later and saw someone else who was much more relaxed about the whole procedure . Allowed me to sit up a little as was so uncomfortable and found somewhere to put the drain and they drained another 5 litres . It was almost instant relief and I started my chemo the following week .
My chemo was successful and had 8 hours of surgery followed by more chemo and have just finished a year of maintenance Avastin . Have been Ned ( no evidence of disease since surgery and my CA125 is down to 8 (was 3880 when diagnosed) . So despite everything I have had a good year since finishing chemo in January 2017 and am back to walking the dog , gym and Zumba .
As you said your mum was fit before the cancer so once they have sorted the infection she will cope well with the chemo . Maybe you can ask if they can try again to drain or get a second opinion. Is she at a large teaching hospital or a cancer center of excellence? You could also ring the Ovacome helpline for support .
Remember to take care of yourself too and let us know how she gets on .
Do ring the Ovacome advice line, it maybe that a second opinion may result in the drain taking place. Mostly we are told that a delay of a week or so in chemo doesn’t matter but your mother does need her strength and eating while waiting for a drain or the chemo to take effect will be difficult.
That your mother is fit and relatively young will help her with her forthcoming treatment.
Although my cancer was at a different stage when I was diagnosed, I also had a pleural effusion. Mine was drained before I had any treatment, & has so far never returned. Di
So sorry that you and your mum are going through this. Your mums situation is almost completely the same as my mums was this time last year. She was working full time all the up until mid jan, she went from feeling a bit bloated and not eating to extreme bloating with ascites and eventually was admitted into hospital with that, pleural effusion, 3 infections, oxygen pipes on, very low protein causing her legs to swell hugely! At that time we were told to say goodbye to my mum- she had literally been diagnosed. It was the worst time of her life.
She was actually told Chemo wouldn't happen. But mum was so determined and slowly slowly took each problem on head on, after 3 drains in pockets of fluid, 2 drains of the pleural effusion and 3 weeks later still in hospital mum was told she'd have the chemo but she wasn't ready, honestly at that point I thought she would never actually reach chemo but the hope of it kept her going! It was put off 6 times but the truth is, when she eventually got to chemo she was in a far better place for it both mentally and physically. No one wants to hold off on chemo but have some faith in the doctors that they're doing what's best for your mum at that time and if you're in doubt then push for answers. Just keep her positive and keep her determined, it made such an impact with my mum. A years gone by and she's had the chance to get so so much better with chemo and although we know it's to buy her more time than anything else, she was able to eventually lead a very normal life again, so have hope!
Now mums cancer is back at it and we are still staying positive and hopeful for another year. Take things a day at a time and set small goals and before you know it the weeks and months may pass and a new "normal" is being lived. If you focus on too much at once it's extremely overwhelming. I hope this gives you some hope, I'm hoping your mum will get to chemo soon xxx
Yes I did and had to have two lots of drainage pre chemo....I honestly don’t think it affected much subsequently but is quite frightening....especially when the diagnosis is so recent....good luck to your mum...she will feel much better I’m sure. Love Chris xx
55 working full time then passed out a few times backache tiredness most the symptoms just put down to age thought might be anemic but was knocked for six when doctor sent me for scan to be told two days later had a mass in my abdomen
I struggled eat with ascitis lost a lot of weight had three drains but once chemo starts will dry up your mums ascitis and she will start to get her appetite back x
Sorry you have joined us, but glad you have this support. Wonderful board! I am 64, diagnosed last May 2017 with Stage 4 Ovarian. The Stage 4 was only because of the pleural effusion; the cancer had not spread to major organs. Main symptoms were extreme bloating (ascites), no appetite (could not eat), extreme exhaustion. I, too, have been healthy and health conscious most of my life and no family history. Long story short, ascictes was drained and chemo started within 3 weeks of diagnoses even with the pleural effusion. In time, the chemo (carboplatinum/taxol) took care of the ascites and the effusion. Despite chemo side effects, I was feeling much better after 3 or 4 treatments. My stomach was smaller and the effusion was slowly going away. My current CA 125 is 30, compared to over 5000 at diagnosis, and I am just about done with first line chemo. I also lost a lot of weight in the beginning but that stabilized pretty quickly. Bottom line: hang in there. Once she starts chemo it can turn around quickly. I wish that for you both. My daughter has been my main caregiver and I know how tough it has been for her. Take care of yourself too! Hugs from Seattle USA
Hi everyone, I really can't say how much it means to get such a good response to my post, it really does mean a lot and gives me some hope that my mam will have better days to come, fingers crossed! I really appreciate the detailed posts about what you have all been through and what we should expect in the coming months, before now we knew nothing about ovarian cancer - i appreciate the doctors can't predict how you will respond to treatment as everyone is different but it's still nice to get an idea! It seems a lot of you have had similar stories, feeling very unwell at the beginnning and the chemo has worked well and eased symptoms so I pray this is the case for my mammy.
At the minute, as I said she is quite symptomatic, it's odd - one day she is feeling really really good and the next she is in pain and has a lot of pressure cause by the ascites/pleural effusion. She is quite breathless now too since getting the pleural effusion. They said they may attempt to drain but are now saying the respiratory team said given its only moderate they would prefer to just get rid of the infection and attempt to start chemo, they mentioned draining increased the risk of lung collapsing! So many complications.. When she has a bad day she is wondering what is going on inside and if things are worsening as she hasn't had any chemo yet. Then she might wake up the next day brilliant again, so things are a little all over the place at the minute. I also think when she's feeling unwell she gets quite anxious, which doesn't help, although I'm sure it's hard not to worry.
Can I ask how you all were after your first session of chemo? Were you able to go/do anything in between sessions? We would really like to enjoy times with mammy when she is most fit! At the minute she is still in hospital getting the antibiotic through a drip, we are from Northern Ireland, they do chemo every Tuesday in the Belfast city hospital. They seem to know what they're doing there, although hoping maybe next week they will attempt draining again with some success (after attempting it numerous times already). She is so bloated since she hasn't been drained yet, it's so uncomfortable for her, looks about 7/8 months pregnant.
At the minute, it's hard to see when the good says will come or even when chemo will start/if it will be successful but just trying to stay hopeful, especially after reading some of your stories. You are all an inspiration! Lots of Love to you all.
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Lots of Love to you all. 
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