Bloated stomach

[Carpag]

Has anybody any advice. I am waiting to see if I am accepted for a new trial at Royal Marsden . It will be my third line of treatment. This time I have a huge bloated stomach which is very uncomfortable but I am told it is not ascites. Has anyone experienced this which has improved when chemo started. I have a lot of pain in my stomach but I am told the areas of disease are very small. I find the time waiting for treatment to start unbearable. Hopefully it will start soon

[Lindaura]

Dear Caroag,

I can’t help but feel this bloating has to be ascites? What else can it be?

My only other thought as it could be a gas build up from an intestinal blockage.

No matter which, it is not acceptable.

I just don’t feel that you are getting the best treatment, even though you are at the Royal Marsden.

Why are you going on another trial?

I thought you were about to start weekly Taxol?

And didn’t you have good results initially with Carboplatin and Taxol?

Why can’t you have this again, and then go onto a PARP Inhibitor?

I have heard good things about weekly taxol, though.

Also, I am currently on Carbo and Caelyx for my first recurrence and my CA-125 has dropped from 473 to 87 in just 5 weeks.

Please get treatment right away. Please never listen to “watch and wait”. Get treatment now!

I wish you all the best,

Laura

[Carpag in reply to Lindaura]

Dear Laura

Thanks for your reply.

I also feel I am not getting the best treatment but the alternative to being on a trial at the Marsden is to having the same weekly Taxol at my hospital in Surrey. I never found them to be very efficient and it is a long way from where I live. The trIal is Taxol plus a tablet for three days. One of my blood tests showed a low level of creatinine so they have agreed to repeat it tomorrow. I feel really frustrated there is no one to fight your corner to get the treatment or advice you need as early as possible.All I'm ever told is to go to A&E or take more pain killers. You have to chase it all yourself.

That's really good news about your CA125. Hope it continues to fall

Best wishes

Sandra

[Lindaura in reply to Carpag]

Oh Sandra,

This does not seem right. Have you tried calling the Ovacome support line? Please do this.

Weekly Taxol sounds good, but what are the tablets?

Do you have an Oncologist you like there? Do you have a CNS?

That’s the nurse assigned to us, who can facilitate appointments and even prescribe meds, as well as answering questions and giving us results of tests between appointments.

Also,

I think you should post a question about the Royal Marsden in this site.

Like: Anyone found a good Oncologist at the Royal Marsden?

Or who should I ask to see at the Royal Marsden?

I hate that you are suffering.

But in the meantime, do you know what those tablets are that you are taking?

Best wishes and gentle hugs,

Laura

[janmark43 in reply to Lindaura]

I had a consultation with the brilliant Professor Gore at the RMH in 2017. I was devastated to hear he died following a yellow fever vaccination in January this year. He was the person who changed my OC type diagnosis and set me on the road I am now continuing all be it at a different hospital. I shall be eternally grateful to him. It is so important to have an oncologist you have complete faith in as I do now.

[19Mary in reply to Carpag]

Sandra I'd recommend oncologist Dr Susie Bannarjee who is at the Royal Marsden in London and Surrey. I was never under her care but met her when trying to decide where to move treatment after a disastrous start. She had a terrific team of back-up nurses who were extremely efficient booking appointments, readily available email addresses and phone numbers etc. I really liked her and found her most impressive but chose to move treatment where My preferred surgeon operated.

Might the swelling be lymphodema?

All the best.

[January-2016-UK]

What is the name of the proposed trial? I had a very good response in weekly Taxol and apart from hair loss and some nail damage, very do-able.

Is it definite you will also have a tablet to take or us that randomised?

[Carpag in reply to January-2016-UK]

The trial is called "Dice" and yes it is randomised. It's being run by Imperial College and not a drug company as such. I have just heard this morning after a further blood test I have been accepted but don't know which arm. I am pleased but now have to wait until 21st to start