NiCCC BIBF1120 trial

Hello Ladies,

Does anyone have experience of the above trial? Two weeks ago I went for my end of chemo CT scan and follow up. I wasn't expecting the news I received, despite optimal debulking a tumour has regrown in my small bowel and the lesions in my liver which I was told were benign are solid tumours and it is encapsulated by cancer, there is fluid in the lung. I only had 5 of 6 carbo /taxol as it caused low blood levels, but apparently was totally ineffective . I was offered palliative care and a possibility of a clinical trial. It was quite a blow, and not delivered with a great deal of sensitivity. The oncologist said she wouldn't recommend any further treatment . My dilemma is that the above trial is randomised I have a 1 in 3 chance of being put back on chemo. Do I really want all the side effects again? plus all the hassle of a long journey on top of feeling c**p. Thank God for a lovely Macmillan palliative care consultant and nurse.It was the first time I felt listened to and able to have a proper discussion. She agreed to trying to keep as healthy as possible, diet exercise and mental care, and wasn't averse to alternative treatments but warned me to be careful about the costs. Sorry to be so negative but the last couple of weeks have been tough, it has also been difficult knowing how to tell elderly frail parents. I will have to get back to my mantra of live well/ die well. I will handle it but it is b****y hard. I have been grateful for oramorph and Wimbledon!! I will need to find another distraction tomorrow. Jane.

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Hi Jane , honestly such a dreadful blow I am sure others with more personal experience will be along soon but just had to send much love , are you aware of the cancercommons situation I understand you send in your particular issues and they meet and come up with possibilities it's a group of professionals and others specialised in cancer .

On the other hand how about a second opinion !!!!!

As I say much love and a huge hug x

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Thanks Christie, the lovely palliative care consultant showed me the CT scan results and explained why surgery wasn't an option. She also agreed that further chemo given my blood levels could also be difficult. I will have a look for this cancer commons. I do tend to lean towards natural remedies. Hug received .x

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There are things that can be done about low blood levels caused by chemo. Blood transfusions for the red end of things and G-CSF injections for the neutrophil/white end of things. It doesn't sound as if they have explored these possibilities. I wouldn't have got through four of my five chemo regimes without one or other or both of these. Worth asking about? Best of luck with it all.....xxx

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Hi Tigsy, I feel you are almost ready to give up, I hope I am wrong & you have the fight in you to carry on.

I was only given 6 mouths to live that was with chemo. I have had 31 chemos so far & have made 2 years +. I am 3c but it had gone every where & I had 6 chemo before surgery.

I have read on one of your early blogs that states you are clear cell. I am not but there are ladies on here that are. Maybe you need to ask what treatment have they been offered & if they have been offered something else that you haven't been offered if so then you need to go back & ask for that.

I do agree with Christie22, I seconded opinion would be a good idea. If your onc is not offering you any more treatment other than a trial that you only have a 1in3 chance of getting I strongly feel you need to find someone who will help you.

I feel they are given up on you too early I realise clear cell is hard to sort out with chemo but even so you have only had one line so far. Unless I have read that wrong.

There is a help line phone number on here it might be an idea to ask them they know a lot more than I do.

A healthy diet will help I don't think it will cure. I have tried every kind of diet & all kinds of strange things but the only thing that has worked for me is chemo. I am not free of cancer won't be but it's keeping it at bay & hopefully will carry on doing so.

Please keep us up dated to what happens next. Take care Cindyxx

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Hi lovely

SEEK A SECOND OPINION just because 1 treatment hasn't worked doesn't mean to say another won't like everything it's tweaking it to the right combination for you. I'm very shocked you've been told palliative care after 1st line? Stay strong ask to have a transfer to the Marsden or Christie as from what others have said they're the best in the country. Xxx

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Hi Tigsy, I have just seen another clear cell lady asking about the same question as you the trial slightly differently named as Nintedanib trial.

If you look back on here at Ann87, 2 day ago. She is also in a similar situation to you might be worth reading her blog.

So far the lovely ladies on here as come up with the goods & have suggested some great ideas.

Max27, has come up with a very good idea to do with your bloods. I haven't so far had this problem but seeing Max has been able to have more treatment by having a blood transfusion & G-CSF can only be a good thing. Take care Cindyxx

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I don't know where your hospital is but I really don't think you should give up yet. I was diagnosed stage 4 three and half years ago and have had massive debulking and three lines of different chemos, each with different side effects. My bloods were affected very badly with the last line of carbo/caelyx but recovered after transfusions etc. I am presently waiting to hear about a trial at the Marsden. I will try anything to keep going and am at present enjoying my life as best as I can - going to Portugal this week. I know I can't be cured but palliative care can keep you going for a long time, but you need to have the strength of will too.

My message to you is don't give up and please seek a second opinion.

Lynne

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Jane-I'm sorry for your news. My sister received similar news a few weeks back. We are looking into clinical trials now. It must be so difficult to face your own mortality in the face of elderly parents. Our parents are also elderly and failing. It is not the way we all thought life would go. My prayers go out to you for peace.

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So sorry to hear your news Jane. Some of the medical staff are not good at handing out bad news. It's such a difficult thing to hear and they should appreciate that although it's something they do every day it's all new to us. All our thoughts will be with you and as you say thank goodness for Macmillan.

I can't help you with advice about the trial but wish you the very best of care. Zena xx

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Thank you ladies for your replies, I haven't given up, I will call the helpline and try and get some more information. I do feel the hospital haven't explored every avenue. I didn't even get the option to object to further treatment!! When I get my head around all this I will write down all my experiences and send them to the local NHS Trust as there is room for improvement. I value all your comments.x

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Hi Jane, I, too, have stage 3C clear cell, had optimal debulking in December and have just finished chemo. I had liver nodules that I was told were normal. I had low bloods throughout chemo and severe breathlessness and they took the taxol off and only gave me carbo for the 6th round which made no difference ar all. I am waiting in trepidation for my scan on 17th August. I lost my eldery dad just before my op and now look after my mum who is 91. I have so much sympathy for your situation and share your fear. I have been looking at the niraparib trial which is available at my hospital -can you drop out if you get the chemo? I definately think you need more info and another opinion. There also seems to be some hope with statins so worth asking. Please keep in touch-our journeys seem to be the same-I am behind you as my chemo was delayed when my dog bit me! Best wishes, Wendy

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Hi Wendy, our journeys do seem very similar. I am sorry at the loss of your dad, I hope you are getting help with your mum. I am going to attend the appointment at the Marsden re the trial and go armed with questions, hopefully it will help me to make an informed choice. I hope all goes well with the scan in August. Jane

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Good luck!

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As Christie has said, ask for a second opinion, preferably in one of the bigger cancer centres like The Christie in Manchester or Royal Marsden in London. Good luck. Ann xx

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