Cabozantinib (XL184) Trial Drug - update

[sarah1963]

Just to recap. this is a trial drug taken in pill form each day. I have been taking it since October. The trial period ended in January but as my response was good I continue to take it. I was the first of only 7 women in the UK and 100 worldwide to take it as a phase 2 trial for OC. I think it has been licensed in the US for thyroid cancer and is also proving effective for prostate cancer.

The trial MAY re-open and my oncologist at the RM has already got another 6 women lined up. I recommend that you make your own oncologists aware of it so that if you are a suitable candidate you can be referred.

I'm not familiar with the trial criteria but my cancer had spread around my liver and throughout my abdomen so it doesn't sound like a first line treatment. I have already had carbo/taxol, caeylx and Topetecan. A good proportion of my tumours were cyst-like. The drug works by attacking the blood supply to the tumours. Mine have significantly reduced in size and are haemoraging. This activity has caused my CA125 to rise and is not viewed as a valid indicator.

I've already talked about the side effects. Some have subsided and I am learning to live with the others. Immodium dependent!!

Its not a cure but the drug is certainly knocking the stuffing out of my tumours for the moment - long may that continue. I very much doubt I would still be alive had I not been given it. I certainly wouldn't be off to Cyprus with my husband and teenage sons next week.

I really enjoyed the rants initiated by Suzieque last week and while I sometimes get fed up with the Polly-anna style reasons to be cheerful this IS a good news story.

I hope you can all enjoy the sunshine.

Love

Sarah

[BusyLizzie]

Hi Little Twin,

Thank you so much for the info and as your sons say, "taking one for the team". I am thrilled that the tumours are still being dismantled and whilst the side effects are I am sure depressing to say the least, are not totally debilitating. To be able to go to Cyrpus must be a huge boost and I hope you have a wonderful, relaxing, Sunny, paradise like holiday.

Not sure as to my own situation yet, it may be a little clearer after my scan and blood test later this week. One minute I think I am doing well, and the next I am not so sure. I will be keeping an eye out for the next phase of the trial as it is another hope for control for me. I still have secret weapons to deploy. I am only at DEFCON 2 until I know whether caelyx has failed.

Yes, I am enjoying the Sunshine thank you. You said a month or so ago, it is what we needed, and sure enough Here Comes the Sun (good title for a song that). I managed a wander around Worcester on Saturday, the first real outing to life in 3 months and down by the River it was wonderful.

Love Lizzie

X

[sarah1963 in reply to BusyLizzie]

Thanks lovely twin! I put on my serious voice for blogs like this.

I'm sure you are doing well. Its easy to forget how you were feeling a few weeks ago compared to now. You probably wouldn't have been able to go to Worcester then. Even if it was a struggle you did it. Let us know about the scan and blood test. I'll be keen to hear about your secret weapons too but you might not need them.

Love Sarah

[Whippit in reply to BusyLizzie]

Dear Lizzie

I'm delighted to hear you had a walkabout in the sunshine. You must be feeling a bit better. I'm keeping my fingers crossed for your scan and blood test - and now there's the Cabozantinib trial to add another plan to your strategy. Keep us posted and good luck. Xxxx Annie

[BusyLizzie in reply to Whippit]

Hi Annie,

Many thanks. I will blog next week when I have a fuller picture of where I am. Did you ever see the sitcom 'Allo Allo'? If not then this will mean nothing to you but with your new 'profiles' I keep picturing you pulling your glasses down onto the end of your nose and saying, "It is I, Eclair!"

Love Lizzie

X

[Whippit in reply to BusyLizzie]

Dear Lizzie - You have psychic powers. I do always wear my reading glasses at the end of my nose and they're slightly askew these days as I sat on them a couple of weeks back. I also like good grammar so I would use 'I' and not 'me' which is rare these days. So it is I, Elcair, erstwhile Maverick, and now Whippit! (wish I knew how you make those smiley faces). This, by the way is what my darling husband calls me when he forgets my name!!

[bosue]

Hi Sarah, great news, get rid of the little b*gg**rs, kill them off ! Have a lovely time in Cyprus Lots of Love Sue x

[sarah1963]

Thanks Sue, I'm getting a bit scared about going on holiday to be honest. There is no reason why I shouldn't be fine but this bloody disease knocks your confidence. I hope you get good news on the 4th April and that the smile is genuine over Easter.

Love Sarah

[Hidden]

Dear Sarah

Enjoy your holiday to Cyprus. I've just defied the negativos and doom sayers to have a skiing holiday. It might not have been what I would have done had I not spent the last 10 months battling Ovarian Cancer and knocked for 6 by chemotherapy .... but it was a skiing holiday!!!!!

Enjoy. Thanks so much for your positive news. That's hope for us all.

xx

[sarah1963 in reply to Hidden]

Hey skiing is skiing. Its exhilarating just being up there. Time to book another holiday I think.

Not sure how warm Cyprus is going to be compared to here. We are taking our wetsuits for the swimming pool. V sad.XX

[Hidden]

Dear Sarah

Thanks for the info and great news, I hope you have a really good holiday.

I am off to Fuerteventura Easter Saturday Yaaaay!!!

Best wishes. Gwyneth xxx

[BusyLizzie in reply to Hidden]

You have educated me. I had to look up where Fuerteventura was! Have a super time.

Love Lizzie

X

[sarah1963 in reply to Hidden]

Dear Gwyn

I hope you have a lovely holiday too. I think you might be going to a warmer destination and if its hot enough you can just relax in the sunshine. All that vitamin D in the sunshine is good for us apparently. bon voyage

XX

[Hidden in reply to sarah1963]

Dear Sarah

Just had a text message off my daughter, she is on holiday in Cyprus and it is really hot and sunny there so you should have a good time.

I hope I won't be too hot with my wig on otherwise I will have to do my turtle impression ( scary ) still all that vitamin D will make my hair grow faster ??? I know the weather is great here at the moment but when the schools break up it is sure to change.

Love Gwyneth xx

[Hidden]

Lizzie

Thanks I hope to have a nice rest at least ( lol ! what am I saying? I sleep all the time anyway ) last August my onc said that I had about a year to live, and that I wouldn't go in remission, had palliative chemo to try to shrink it ....

now in remission GREAT!!!

By the way it is you that educate me thanks for all the useful information you put on this site ( all stored up in case I need it )

Cheers xx Gwyneth xx