Hi ladies, I have been lurking and reading your stories for the last few weeks and in total admiration of your personal battles through this horrible journey.
My story started in October last year when I thought I was suffering from a urine infection, after many delays in not being able to see a doctor and being treated on antibiotics for a suspected gall bladder problem, I crawled to a and e walk-in in centre to be diagnosed with ovarian cancer. I spent three weeks after a drain to remove 14 litres of ascites which caused my blood pressure to crash so many times. A couple of weeks later I’ve had meetings with the cancer team at Weston park hospital in Sheffield and due to start taxol/Carbo the following week. My cns decided I needed to have the fluid drained that had built up again before the chemo. Again back to hospital I warned them not to drain too quickly due to what happened before but no one listened so again an overnight stay turned in to a week, I then developed pneumonia so the first chemo date was cancelled. The antibiotics caused severe d and v so much so that I ended up missing my next chemo date. I lost over three stone, couldn’t eat and truly thought I wasn’t going to get back home from this. The nurses kept telling me this was making me feel so much more I’ll than any chemo would.
Fast forward to first chemo and I’m positive thinking that finally I’m going to kick the cancer rather than treat the symptoms, the nurse starts the taxol drip, 15mls goes in and I went into anaphylactic shock. The chemo is stopped and I’m stabilised after my heart rate goes over 160 bpm so scary. My oncologist decided to start me on just the Carbo a week later, I was pretty stressed as it started going in but luckily I didn’t have any problems and felt relieved that I was kicking it after all this time. My ca125 was over 7000 which was a shock but after the first and second chemo it reduced by a thousand each time so I was positive it was doing something.
I had my third dose of Carbo and a week later noticed that my tummy was starting to fill up again. I went for my ct scan last week and was hoping that everything would be showing something good despite the niggle about the fluid coming back.
I went to see the oncologist yesterday to be told that the Carbo was not working, my next dose due next Monday wouldn’t be going ahead and not only had the cancer not shrunk but it had grown. I was told obviously this has brought my chances of survival down to months rather than years and they have left it to me to decide what to do next. I have been offered caelyx or tamoxifen but told the chances of this working are slim. The way the news was told to me felt like I’m done for already. They are going to drain my tummy again on Monday and have another appointment with the oncologist to tell him my decision on which way to go on Thursday. My cancer when found first off was on one ovary and spread to the omentum and was stage two. I’d had a hysterectomy in 2007 but they left my ovaries in as the surgeon preferred to leave them if they were healthy and due to my age at the time. I’m now 55 and feel totally devastated. I have three beautiful older kids who live with me that are my world. I hate seeing them suffer with me, they are looking after me so well but I feel so cheated knowing I won’t get to see them get married, being a granny etc.
Apologies for the long sad post but I have no one else to talk to and I know you ladies will know the feelings I have. I’m trying to find my big girl pants today. If anyone knows where they are or can give me a kick up the butt I would be so grateful
Diana x
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TeamTerrier
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I'm glad you reached out to your teal sisters! Your not alone anymore!
14 liters I was shoc k ed when I read that!!! I had 3 liters on my last drainage before surgery. 14 I didn't think that was allowed.to much at one time.you poor thing.have you got any second opinions?
Remember...the best thing about the future is that it comes ONE day at a time...
I am sorry to hear you find yourself lost and alone, not a good place for anyone to be in. Although I don't have any medical knowledge to pass on to you, I do know that on here you will find lots of friends, willing and able to be a shoulder to cry on, or just listen while you have a rant. Good Luck with the decisions you have to make. Take Care Lyn xx
Oh Diana your not alone, we are all here holding yr hand and offering a shoulder to cry on or an ear whenever you need to rant. Have you considered a getting a second opinion? Take a day at a time xx Big hug, Kathy xx
You have had The very worst of unfortunate events which have not led to a good outcome so far.
You and your support system need to change that right now.
I think you need a second opinion ASAP.
There are many recommendations in this site of how to that, but especially in your case, time is of the essence.
This might be costly in the beginning, because you might have to stay close to a different hospital, such as the Royal Marsdrn or The Christie, but you must get that ball rolling now, with letters and phone calls.
Having active cancer means you are beset with that awful ascites, which makes it hard for you to stay strong, to eat and drink enough to keep you well enough for whatever Chemo is suggested.
Have you asked if you can have the debulking operation first? Or is your condition too weak?
This is just tragic and I hope you can reach out to another hospital for help!
Here is a suggestion someone made a while ago that I kept track of:
“Second opinion was with professor F at the hammersmith in London. She is known for tackling ovarian cancer often considered inoperable by others
I was operated on at Queen Charlottes by Prof Christina Fotopoulou and team and returned to Addenbrookes oncologist for chemo.”.
I would also call the
Ovacome Support Manager, Anna, who maybe able to guide you - freephone helpline 0800 008 7054.
I hope you are well enough to handle this.
I wasn’t, but I was lucky that my team got me the right treatment right away and I am Platinum sensitive, so as soon as I got my second infusion, the cancer began dying away and the ascites and pleural effusion disappeared, so I could eat, drink and breathe again.
I know it is a drag to be in hospital, but see if your supportive family can insist that you be in hospital for whatever the next chemo is, to keep you stabilised, hydrated and monitored.
Hello Diana... wow you really have had the works! I agree with others about getting a second opinion from a specialist... if nothing more you will have explored all the options. As others have said please feel free to let it all out here- I’ve no idea how you have coped so far- you must have more strength than you know xx
So sorry to read this - as suggested a second opinion may provide more options - the Christie offer the Rotterdam regime which some of the ladies in here have had that has bought more time - have you been referred to the palliative care team as they should be able to offer emotional support to you and your family as well as keeping on top of any pain issues.
There is a lot of support on here so don’t hesitate to post - we all understand how terrible this bloody disease can be x
Hello there I feel alone like you. My diag very similar to you but I managed the carbo/tax combo. I was diagnosed when I was 53 and like haunted by the what I won't see things of my 2 beautiful teenagers. I was N.E.Dfor 18mths more chemo then parp but back it came. I have chosen secondary surgery at Queen Charlotte's ( proff F on maternity).It has been the worst time of my life but my surgeon assures me " no cancer left" after 8 hrs surgery. Don't give up I'm miles from home but doing this to see my second daughter graduate and be that mum in the wedding shop crying. Best wishes for everything.xxxxxx
I really empathise with you as I was diagnosed at A and E too with ascites. I had mine drained in 2011 and it was the worst of times. I hardly noticed anyone around me for the first twelve days and then I had fluid removed on the ward from a very large stomach.
You have a number of wise replies I won’t add to but I wish you well. I’d also say that the people on this site have been a great comfort to me.
Welcome Diana. Yours has been a dark tale so far, but may I still say : What a cute nickname and profile picture!
I'd echo the advice given: Please consult with a big cancer competency center regarding alternative chemos e.g. Caelyx or Rotterdam, and with the radical surgeon C.P. in London. They may open up other pathways for you. I hope you stay strong enough to try something else and see the disease retreat. Best wishes. Maus
I’m so sorry to read you’ve been having such a rough time with this horrible disease, I completely understand you feeling so low right now, but you’re not alone on here and most of us know what it’s like to suffer from ovarian cancer. There is hope and more options available to you and I suggest you seek a second opinion ASAP...
I see you’re in Sheffield so please consider asking for a second opinion at the Christie in Manchester, it’s a centre of excellence with more access to trials and renowned oncology professors based there...I’m in Liverpool and have been very happy with my care but if I recur then I would definitely consider transferring my care there...please speak to your GP and enquire about this, its your right to do so and could be a lifeline for you. Dont be scared you can get through this Diana, and Laura has given good advice to call Anna the Ovacome Manager as soon as you can.
There is support and there is options for you and I’m sending huge hugs your way for some positive results and for you to achieve remission,
I kept being drained and it was decided to do a radical hysterectomy, full debaulking before treatment.
Is there no op they can do to remove the cancer? (I know you have had hysterectomy) and then do carbo/taxol after.
I was 1c, but only given a couple of weeks because of my ascites. I was given a couple of blood transfusions and 1 tablet of Omaprezole to disperse acid and return my appetite.I was drained over a 2 week period then the radical hysterectomy and started carbo/taxol 6 weeks later, am still here 4 years later.
I am sure there is a way through, but your team just need to get it together.
Don’t give up hope, you just need to speak to them, take someone with you,
Chemo didn’t work at all for me either and I was offered caelyx but decided to go for a second opinion and have been on a clinical trial for over a year which had kept me stable. I went to the London Clinic and paid for a private consultation because I didn’t want to wait.
Well....if I know anything about Terriers - they never give up! They are feisty, strong & brave! So as your name suggests that you have one, may you be like them and FIGHT!
Dear TeamTerrier - so many helpful comments from others for you to go through - yes, definitely ask for second opinion. It's hard to fight for yourself particularly when one's feeling physically so weak, and one needs a lot of mental energy to engage with being a part of the medical team, and being on a steep learning curve regarding all the relevant terms and kinds of treatment. And fear itself can be a very negative inhibitor of engagement. I've just discovered this site a couple of weeks ago, and it is just so supportive knowing that there are many others who are engaging with various kinds of challenges. So keep posting and know that in whatever ways each of us chooses to support you, whether through good thoughts, blessings, or prayer, all these are coming your way. Many blessings to you and your family, Marie
Oh you poor darling , I had 10 litres drained , I thought that was a lot but 14 , gosh .I haven’t read through all your replies but I am sure there will be some that agree with me that you need a second opinion.
Firstly there is a protocol for the drain because of the threat of crashing BP , my hospital drained every two hours then two hours off , time for your body to recover , Yes it went on for a long time but I never felt ill while it was being done .You were unlucky with yours , draining does not usually mean a long stay in hospital .
Secondly I don’t like the way the hospital staff are talking to you , most of us seem to have far more caring Doctors and Nurses .
Lastly , do not beat yourself up about feeling low , we have all been there and sometimes return to that dark place , it’s a rotten disease but we have to be well equipped to deal with it and I personally don’t think you are getting enough support from your hospital .
Please get a second opinion , change hospitals if you can .
Sending lots of love and hoping your next post will be more upbeat .
Glad you came on here these wonderful ladies have unfortunately so much experience in many things so good to get your advice. You have had a terrible time. Your story to me sounds very familiar. So many things going wrong. My mum's treatment didn't work either. My advice is one day at a time and enjoy simple things with your family. I definitely would contact Jayson Gordon in the Christie hospital he will offer a 2nd opinion and there are trials available. You can email him. Unfortunately we weren't in the main land so it wasn't an option for us. Stay strong xx
Diana, I’m so glad you’ve reached out to us, you’ve been through a horrible time which must have been so hard for you and your three children but it sounds like you’re a strong and loving team.
You’ve had some great advice, particularly about a second opinion from the Christie and I would echo the suggestion of getting in touch with Anna on the Ovacome Helpline for help with making contact quickly with the Christie team.
Hello Diana, all I can say is that you are not alone. In this group there are wonderful people who will support you with knowledge understanding and empathy. The responses I received when I posted seeking help for a small but distressing side effect helped me beyond measure.
As you have already had lots of advice I simply want to offer a hand to hold and shoulder to lean on.
Dear Diana So sorry to hear you are having a hard time. The wonderful people in this group are here to support you , you are not alone. Just wanted to send big hugs X
Definitely ask for a second opinion at a cancer specialist hospital. You’re entitled to one. We’re all here for you so keep in touch.
Welcome to the group. I am so sorry you are going through this but would agree with every bit of advice you have been offered. Get a 2nd opinion, change to another more positive team, I know of people now who are living years after they have been told they don't have long. Try and not think of the future( hard I know) but it does not change anything so enjoy each day with hope. New drugs are being invented right now and no-one can predict what will happen to anybody. So see positive friends and remember you have managed a lot so you are a survivor but low in spirits today. Please keep in touch and share your feelings anytime.
I just want to say I am so sorry for what you have been through and are going through and glad you finally reached out. Please try for a second opinion--if you feel too ill, ask your wonderful children to do it for you--make that appt--private if you have to due to time--but that is what everyone is saying and I hope you can do it very very soon. Please keep us posted. oxoxox
Thank you for reaching out Diana - you are not alone. OC can seem like an avalanche of symptoms and you need family and team to pull you through. The ladies (and loved ones) on this site have a depth of understanding and solid advice when the symptoms seem overwhelming. There is also an avalanche of care and love on this site when you feel alone and lost. Love, Valerie xx
I just want to echo all the very good advice everyone has given you so far. Top of the list is get a second opinion as soon as possible . Because your hospital appears to have given up doesn't mean you have to go along with them. Lack of empathy is something many of us experience but it doesn't mean you put up with it. Start the ball rolling before you meet that Oncologist on Thursday so he will know you are not giving up without a fight. It would be good to have a family member or friend to help you with you making calls etc and accompany you to appointments. Anna it Ovacome will help with the procedure for a second opinion . You can also find it on this website.
Just to let you know that there are many women on this website who were given the same message as you who refused to believe that there wasn't another way and who are still encouraging women on this website.
Now I know you're down at the moment and who can blame you but I have a feeling with a name like TeamTerrier it won't be long before you start living up to it. Good luck and keep us posted Diana
Bless you, I certainly know where you're coming from. I had ovarian cancer last year, ascities twice and drains. Blood pressure issues, low potassium, low hb and blood transfusions plus low magnesium. I was eventually on carboplatin and paclitaxel once the ascities was gone and next, I had major debunking surgery and total hysterectomy, removal of omentum and appendix plus a section of my liver where the cancer had spread.
Although I have very good friends and a partner, I don't live with him. I felt completely lost and alone as I live alone. I was terrified and felt forsaken. Then my precious dad died suddenly before my operation when I still suffered badly with ascities. I had my grief and my mothers grief to deal with.
I still feel alone sometimes and the slightest twinge has me almost panicking. Thank God for my friends and two beloved cats.
I send you comfort and hugs as I know how you must feel. Be strong because you are Xx Jayne
I am in awe of your stamina and courage! I also had anaphylactic responses to taxol and carbo, but my Onco put me in a desensitization program that allowed me to receive the T/C at the hospital. Also, he got me into a study of Olaparib. Between both I have managed to live 11 years since my original diagnosis of stage 3C and a 2 year life expectancy.
I agree with all the ladies who say Get A Second Opinion! My first Onco gave up on me and told me to put my affairs in order. I had to fight for my neupogen, too. May God bless you and keep you; know you are not alone, we are here with you, and please keep us posted!
I am so sorry you have had such awful experiences on top of our diagnosis. I too thought there were protocols on the amount of acities drained. Mine was stopped then started again next day, I was advised due to concerns on effects to the body.
I was fine with chemo but I have witnessed, as others have mentioned, the additional anti histamine & slower Taxol infusion. I think as the others have suggested a second opinion should definitely be pursued.
With so many Teal sisters all over the world there is always someone available to listen on here.
I agree at 54 (52 at diagnosis) we still have too much of our children’s lives to share yet.
I send as many positive thoughts and virtual hugs as I can.
Ohh my word Diana! What a nightmare you have had! My heart goes out to you, i am a similar age to you 53 and stage 4. I get you totally. I am doing ok generally but then have moments of almost panic that i will have to leave my loved ones before i am ready. My only thoughts are give anything a try, this strange disease is different for each of us and seems to react differently to different drugs. I was on maintenance avastin after chemo and surgery left me with no evidence of disease, three months later I have grown two new tumours and now back on the chemo train. Some people do really well on avastin but it did nothing for me. This is why i say to try anything. And with your anafalaxis they will be very cautious and vigilant.
I would definitely get a second opinion especially as you feel they have written you off!!!! Somewhere like Christies, they must have something to give you that will be effective.
I am sending you all my best possible positive wishes, Jane x
Hello Diana , what a nightmare you are going through ! I do remember my body went into shock & I thought I was dying when I had 7 litres of Ascites drained ; never mind 14 !
Just to say , that I am under WPH . I ve had one recurrence but now am reasonable on Niraparib . I am at Clinic as well this Thursday at 4.15 pm . You may well have a much earlier appointment but I’m happy to have a chat / cup of tea ; if you feel up to it . I’ll wear a red/grey dress & I have short grey hair . I fully understand if that is too much for you on a stressful day .
I agree about always getting a 2nd opinion but , in the meantime, could you start Caelyx ? It’s certainly worth a try .
Hey, sounds like you are having a shocking time. My mum also diagnosed after years of symptoms when she presented to a and e with ascites. Her first round of chemo 6 weeks in total also didn’t work , but she decided to try another round of 6. And that was 2 1/2 years ago.
The Drs say she is slow to respond, but she does respond.
Dear Diana, please know that you are not alone. We are all here for you. Take a deep breath. Get copies of all of your scans and records and get a second, third or fourth opinion if necessary. You are too young to just give in to this oncologist’s diagnosis. I find it hard to believe that there is nothing else they can offer you. There are so many drugs available now. We all live in fear but you have to fight. Sending you hugs. Bless you.
Dear Diana. I felt so much for you as I read your story. I’m 52 and my cancer has reoccured. I think too about my children and will I ever see grandchildren.
There are other treatments. Have they spoken about a Parp or Avastin. Get a second opinion and please don’t give up hope. X
I have no wise words to add to the very good advice given already but just wanted to show my support. Sending gentle hugs and hope that you get better treatment very soon.
Hi, Diana. You have been through hell and I am so sorry. The very fact that you wrote to this wonderful group means you are in search of hope. Sounds like your decision is made. Fight it and beat it! You are young and don't want to give up. Do what you have to do, but, make it clear to your onc that you are going to fight this. If you don't sense some positivity from your onc then go see another until you find one who is more in tune with what needs to be done.
I have heard way worse stories and they all came back and are still here. Fight!
Thank you so much to everyone who has replied to me, I am still very much in that dark place but I have my terrier spirit that just needs a kick and don’t feel as alone as I did with all you lovely ladies behind me. I have had another seven litres drained on Monday which has left me feeling like a herd of elephants have walked on my tum but I do feel better. I was 9st7 on Monday and am now 8st5 so I need feeding up but at least I have space to eat now just need to get my appetite back. My albumin and iron levels are so low so I’m feeling really tired. Came home last night and went to bed at seven and slept right through until eight this morning.
I have an appointment tomorrow with the consultant to discuss either caelyx or tamoxifen. My cns came to see me while I was being drained and I asked about clinical trials. Apparently there are none suitable running at Sheffield but they are happy to sort me a second opinion out at the Christie and see what they have to offer apparently the Marsden aren’t taking any more cases as they are snowed under. I just feel so weak today and wonder if it’s too early to go back for chemo next week and wether my weight loss will alter the dose too much. I know it only has a 20% chance of doing something but it is still a chance. Am I better going with the tamoxifen first and trying to get my body stronger as I don’t feel up to the trek over to Manchester at this time?. So many decisions and a body that doesn’t want to play fair 🙃
I hope all you lovely ladies are having a good day today, my love to all you fighters 🌸🌼🌸
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