Well ladies it was a very mixed day. The COC was interesting and even if they realise they don't have all the answers yet that they feel it is well worth trying for all the positive responses they have had. Starting their protocol in the next few dsys.
Instead this afternoon, at the Marsden, it was depressing to say the least and I feel like a dog who needs to go and lick her wounds. The conversation with the consultan started with why are you here, interpreted by me and my hubby, as why are you wasting my time, followed by well you know whatever you do it will be back and in your case where it has returned so quickly after the carbo/Taxel it is not a good sign, followed with there are no trials for people who have experienced ascites and lastly that she was not in agreement with COC protocol - which I had imagine already. Lasted all of 10 mins and now I am on the train trying to pull myself off the floor and get on with life again.
Met lovely Laura - we had lunch together and had a long talk. She looks good.
Love to you all. Anne
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That is outrageous that you were treated so harshly at the Marsden. Unconscionable. But nice that you met Laura and hopefully the COC regimen will work. I’m guessing you will bounce back in a couple of days.❤️
I'm really sorry it wasn't a positive meeting for you. That must feel like a kick in the teeth. I always feel very negative after meeting my oncologist and despondent for a few days and then I pick myself up and think I must keep on going as we have no other choice. I console myself slightly by reading about the ladies who have had multiple recurrences but are still here. Why can't that be you, me or any of us? Also as you're starting the COC protocol how about Aspirin too? When I asked at the Marsden about taking aspirin the Dr did say that there's a large trial using Aspirin in OC so it may be worth you taking? I am going to restart it after my chemo has finished. Take care and I hope once you're home and you've had a good nights sleep you'll be feeling a bit more positive,
The doctor at COC did talk about aspirin - will talk to him about it.
I do ask myself if she took and instant dislike to me - I don't think I said anything to upset her as my husband would of notice, anyway behind me now, maybe she will make me more determined!!
Talk to you soon my dear and a big thank you. Anne xxx
I am so sorry to read your post and about your meeting at the Marsden. That’s the first time I’ve ever heard that no trials are available for patients who have experienced Ascites. That must apply to a very great number of us then?
I’m so glad the COC were much more helpful and pleased to hear that you will be starting their protocol shortly. I should like to wish you every success with this. I also hope things are better once you are home. Sending much love and virtual hugs x
Thanks a lot my dear, I am so glad you lovely ladies are around to help me pull myself out of the hole I have fallen into and get back on the road again. Take care. Anne xxx
HI Anne I am disgusted by this onc's treatment of you. If he/she is your regular onc. I would ask to see a different one ! Maybe a complaint to PALS. Really feel for you. But pleased you have a nice lunch and time to chat with Laura. Best wishes. Gwen Xx
I am so sorry you were treated like this. Do they not realise patients have feelings. I am glad you got on okay at COC. I went back and checked my information and yes the Ovarian Cancer Coalition did mention the Metaformin that was researched in Canada so perhaps you can google this or check on facebook and hopefully it will give you the reassurance you need right now, all the best
I am so sorry you had such inappropriate and negative treatment. Maybe s/he was having a bad day? I would certainly challenge what s/he said, I wonder if other patients are being treated with the same negativity? Anyone else on this forum? Regardless of what s/he said was realistic or not I would complain about the attitude and suggest the person needs to go on a people skills course! I agree with approaching PALS in case others have had the same experience. Who knows what is round the corner regarding future treatment? I would google to see if you can see someone else if you are not happy with this, I am not sure how all this works. Remember we are all behind you and will support you with whatever you decide. I hope you can feel this great big hug I am sending you . I am glad you got to meet Laura and hope you get to meet others in the future. There are a lot of nice, helpful people around, especially on this forum, and they have a wide knowledge and experience they will share with you when you have had a rest and feel happier. So please don't feel too down, keep up your fighting optimistic spirit as you have done for others on this forum. Sleep well, I hope tomorrow will be a brighter and happier day.
Just wrote to you and pressed the wrong button and destroy message!!!
Will try again.
Having had time to think about what and why it happened I have come to the conclusion that I did not help my case by telling her I had gone to the COC that same day, although my oncologist had written in the letter to her that I had intentions to do so. The fact that I had travelled from Cornwall and was going to see and do what I could whilst there was probably overlooked.
Anyway as I have now learnt I am probably not alone in this experience, I shall put it behind me and has they say what doesn't kill you makes you stronger and not take it personally.
Thank you for your lovely message and you take care my dear.
Iv not posted in a while until the other day when your post about the COC protocol inspired me to ask for advice on this. Sticky was so lovely to reply. Anyway, I cannot believe that you have been treated this way at the Marsden. Just wanted to reach out and send you a hug.
I'm sorry that you had to go through all of this. It's so damned unfair. She sounds like a very nasty piece of work. You can well do without that kind of negativity. I am delighted that the coc meeting was so much better and that you met Laura for lunch. At least the whole day wasn't ruined by the 10 minutes with the monster doctor. Hold your head up high, pull your big girl's knickers up and start the coc protocol with a spring in your step. We are all behind you . Sian xxxx
As I explained above, I have thought about why it happened, and even if it is still not acceptable, it makes it easier for me to understand and therefore get on with my life and use it has experience for the future.
Will definitely get out my big girl's knickers and get on with the COC protocol.
Especially as it came at the end of such an optimistic day.
I have to admit, that when I met [the consultant] , I found her surprisingly cold and I spent the first part of our meeting challenging her about her thoughts on Niraparib in regards to my experience: that I was healthy on a low dose, with excellent blood results, but a slow progression of small tumours.
I felt we needed to at least TRY a higher dose, because when I professed before, it was a fast growing progression (before Niraparib).
She became very stroppy, insisting that she had done all the trials herself, and knew what she was talking about. That was true and I had to agree and calmed the mood down.
Because she did offer me a trial, I decided to take it and peace was restore.
Since than I have only seen a team of three wonderful, caring and solicitous, research nurses and several extremely kind doctors, who worked very hard trying to make the trial work for me. I have never seen [the consultant] again.
But your experience seems way out of line, especially as you were talking about the future, after finishing your current regimen.
At least she could have dismissed you gently, with well we have many new trials on the horizon. Come and see me when you are ready.
Meanwhile, I want to add for others reading this, that she meant not joining a trial with Active Ascites at the time. Most of us have experienced ascites at one time or another.
Also, check out the UK Clinical Trial Gateway. Just put in Ovarian Cancer and check it out for future reference.
Next, I want to say how glad I am that you can start the COC protocol, which can be a wonderful addition to your current treatment.
And lastly, it was a joy meeting you and your husband. You seem a lovely and powerful woman and you have taken all the hard steps to try and beat this.
Try to forget that totally unsatisfying meeting and concentrate on the positive step you have taken to go with the COC in conjunction with your regular treatment.
Best wishes and hugs,
Laura
*this reply was edited by moderators to remove the consultant's name and replaced with the text in square brackets*
Having met you yesterday, I can believe that you were not going to take any nonsense lying down and good on you my dear - made me laugh just imagining the scene.
I am at peace after all your wonderful replys and in fact wish to put it in experience box called "my positive and negative experiences during my journey with ov".
I wish also to say this is about one person and not the Institute itself and has we have experienced in life this is quite normal!!
My COC drugs are on the way, the sun is shining, this afternoon I will do some gardening and to top it all I have met some some wonderful people on this forum who have become very important in my life.
I will check out other trials for the future - thanks for the suggestion.
Hope this finds you well my dear.
Love Anne XXX
I see that you are already having chemo at your local hospital, and am assuming you went to the Marsden to investigate clinical trials? I don't think you can do COC regime and another clinical trial at the same time, (they wouldn't be able to tell which was working) so maybe telling [the consultant] that you were about to start COC regime confused matters.
*this reply was edited by moderators to remove the consultant's name and replaced with the text in square brackets*
Yes I knew that. Yes I do believe it was the COC that got me into hot water as you might say, but I did tell her that I was thinking of the future without the chemo I am know taking and without the COC protocol. I in fact take part responsibility for the negative attitude, but I still believe she should have handled it better and not made as if I was wasting her time.
However never mind, next time I will be more careful, less honest maybe and learn from this experience.
So sorry you were left feeling so bad after your appt. I can totally identify with that as i felt the same way after my appt at the Beatson recently. This left me feeling very low but im trying to get my positivity back and you will too. Good luck with the COC protocol. Look forward to hearing updates. Im strongly considering it myself xc
Wow. And really no trials available to anyone who has had ascites?
I am on the COC protocol, since last December, and happy with how things are going. I started it also after being told "just go away and wait for it to return" by a registrar and had a completely opposite message from COC of "this isn't a magic cure but it's definitely worth trying".
People cannot live happily without hope. The sooner our health professionals understand that it's a human need the better. There are things we can try that haven't been through rigorous trials and there are people who are experiencing positive results from them, so why not?
I think it was just in my case and the fact that the cancer has appeared so soon after the chemo in the form of ascites. She informed me that due to this I would not be able to travel so far with these problems to go to a trial - it was the written off that gets me. Up to now I have been in a very health state and therefore for this reason I want to see if there is other out there for me - like you do!!!
I so agree it is something that doctors need to take on board, not all doctors of course, that we need hope whatever situation. I had the feeling, as well as my husband, that she had taken it on her shoulders to explain things as they really were and that there was no hope in my case and for me to take it on board - she didn't seem to realise I live with this every single day and don't need to have it yet again thrown in my face - no empathy - no good me thinks.
Well waiting for my COC drugs, not a magic answer, but well worth doing. To us and COC.
I have to report that I have not had a good experience regarding the Marsden either - first, my original biopsies nearly two years ago were sent there for checking because my local hospital got what they thought was an impossible result as to the type of cancer they found. It took the Marsden almost 10 weeks to pronounce on the samples, confirming what the local hospital found, during which time, as you can imagine, I was tearing my hair out because no one had even told me I'd got cancer yet, never mind what type it was. I only found out later why it took so long to get a cancer diagnosis, following an investigation after making a PALS complaint with my local hospital.
My next contact with them was a year later, when my GP referred me for a second opinion - he seemed to think (or hope) they might be able to offer some other treatment that my cancer hospital here hadn't. The result of that was a letter more or less saying what did I expect them to do, that essentially they had nothing different to offer. I was quite cross, given I wasn't that fussed whether the GP referred me there or not, I only agreed because he was so keen to do something; I'd already researched and worked out they likely didn't have anything to offer me, so to receive the letter with the implication that I'd foolishly expected miracles was really annoying... not to mention my GP's embarrassment, I think he was mortified.
I'm sorry you felt so awful after going there, you must have felt very upset and disappointed, especially if you went there in hope...
I so understand how you must have felt, it is so hard to stand up and be counted and then someone says to you - how foolish to think we can do anything for you - which is basically what was said to me as well you really feel shot down in flames and silly, which is certainly not how we should feel.
Good on your doctor however.
Well I have received lots of suggestions from you ladies, so I will up my research and fight on.
Good luck with finding something. As for how I felt re the Marsden, I just felt annoyed - I wasn't the one who wanted a second opinion anyway, that was my GP, I'd already worked out what the score was, so to speak, so I wasn't holding my breath. Plus I already wasn't impressed with them because of the length of time they took to report back on my biopsies in the first place. I'm sure lots of women get good treatment there, but we don't all have positive experiences with the same hospital, do we...
I live in Scotland have advanced ovarian caner had ascitis and am about to start trials sounds like your consultant is talking bullshit. Get another opinion x
I am beginning to remember more of the conversation and how it went. She told me that as the last lot of cancer had returned so soon after the chemo was not a good sign and this time would get shorter and shorter and that I would probably not be in a fit state to travel to London to do a trial and on top of all that I had a history of ascites - would also be against me for attending a trial. She did say also that I looked very well!!
ICON 8B there are two sets one is where you go weekly 3 times per week and are given smaller dozes of carboplatin and paclitaxel with bevazumab (avast in) once every 3 weeks the other is with the paclitaxel once every week on days 1 8 and 25 of a 3 weekly cycle will know on Monday which one I'm on but I have had 5 litres of ascitis drained 4 weeks ago and it's building up again but not interfering with trials. It's a lot to take in hope you have success🥰
This is certainly outrageous- I am going to message you with the details of someone much better. My cancer returned during my frontline chemo. Before my surgery I had ascites. I have been on the Patriot trial for 22 months and have just had another cm of reduction and have maintained my partial response. The drug is AZD 6738 and the trial is or solid tumours, Will msg you now, Wendy
Just lost my reply to you as I am really tired after yesterday and keep falling to sleep and pressing the wrong button!!!
Thank you so much for your suggestions. Couldn't agree more these experiences leave their mark.
Will need to get through to my oncologist that I need a plan even if I don't arrive there, but hope is part of living. Of course I need to do a lot more research as well - after all the suggestions from you lovely people.
How long have you been taking taxol weekly, and what were you on before?
So sorry Shorty, we were all hoping for better news for you. My oncologist is similar but never harsh. Not always reassuring but I'm sure he means well. Perhaps they're trained not to appear 100% positive-neither optimistic nor pessimistic, our diagnosis is not an exact science. Ovarian cancer affects us all in different ways. Hope things turn out better than they seem.
Hi. It’s interesting as without even seeing the name of the consultant, I think I know who you are referring to! I personally find the consultant a little cold and she certainly riled me up the wrong way when we were told my mums cancer was progressing. Luckily my sister was there to calm the situation. Just because they are an expert in their field does not negate the need for a bit of human feeling!! I find it a little too clinical. That said, mum is at the Marsden still, in the Sutton hospital and her team are pretty amazing. Yes, you get the odd one in need of a little less harshness and without the consultant pushing for mum to be on a trial, we would not be In the good place mum is in now.
I’m so pleased that you are considering other options anyway. Please don’t let the other experience get you down. Sometimes things are just not a good fit - and you absolutely need that trust and relationship with your team .
I found you reply very interesting and who knows how many more of us have found ourselves in this situation - not nice - in fact my own daughter is furious, had to calm her down. Fully agree with you about the human side.
Heard from several people that the hospital is full of the most lovely people however and your dear mum is lucky to know a group of them - that will make all the difference.
Yes, I will certainly look for other trials and I already have the name of another doctor who I am assured is a lovely and deals with clinical drug trials, we don't need this hassle in our already difficult lives.
Love to and your mum wishing her all the best. Anne xx
Oh Anne, that simply isn't true. I'm on the CEBOC trial and I had ascites. I think it's only available at Manchester or Cardiff, its only phase II and designed for those at risk of bowel perforation though.
How dare s/he make you feel like you're wasting their time? Go to PALS to get them retrained in communication skills. Even if he feels your existing consultant is on the right track with your plan then that is what he should emphasise rather than simply a no alternative option.
Big hugs and here's hoping the COC regime does the trick.
So sorry to read you had such a poor experience. I went to the Marsden earlier this year but to the site in Sutton. I had a very good experience although they didn't have a trial suitable for me at the time, before I needed to start Caelyx.
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