Any advice what next for my friend?

[sammyH]

Hello ladies,

Just wonder if you can help.

One of the ladies I had chemo with back in 2012 has been told that her cancer has possibly returned and they may stop treatment...I stopped going to see our oncologist, as I felt he never really gave me any hope...and here he is at it again...but...I want to be able to guide her in a positive direction.

If I gave a brief synopsis of her 'cancer life', maybe someone may have been along a similar path and help us.

(2010 Breast Ca treated with FEC then radio) apart from being later diagnosed as BRCA +ve, this is unrelated to the OVCA

Late 2011 OVCA treated with C and P hyst and debaulking

Sept 2012 Ca returned. Initial poor response by oncologist, but pushed for trial and was referred and spent 14 months on parp inhibitor trial - rucaparib- before that stopped working.

She had 6 months watch and wait before starting caelyx and carbo....

The thing is her ca125 has always reflected what is going on with the disease...highs of 34000 and a low of 19. Currently whilst her ca125 is improving on the C and C, the consultant says her last CT before New Year shows new disease activity ...and wants to stop chemo.

She was too shocked to ask any questions...but he wasn't suggesting anything else.

Out of all the new drugs and trials out there, can anyone think of one she may be suitable for as next line of treatment.

Thank you for reading this, even if you can't help

Xxx

[Hidden]

Hi Sammy, I'm not sure how your friend is at the moment. Emotionally, I mean. If she would like some advice, maybe she could call the Helpline at Ovacome. They're very experienced and will give some guidance if they can and a listening ear. I'm very sorry that she's had this news. Xx

[sammyH]

Thanks...I hadn't thought about seeing if she would ring...she knows I've always used the forum...it was never her thing...but she might ring....emotionally...she seems brilliant to me...I know I wouldn't be doing as well ... But I don't know if she has wobbles she doesn't tell me about

X

[Hidden in reply to sammyH]

I'm sure she has too. It's wonderful she has a friend like you. Xx

[sharonforce]

Hi Sammy

Take a look at my profile history. I have been on a similar path as your friend, I have been on a range of drugs and on a parp inhibitor trial. I am currently on an anti-folate drug trial which at the last scan is keeping my disease stable. I am feeling very well on it, with no side effects and am working, socialising etc. There may be other options your friend could try if she is happy to go on trials. I am now under the Royal Marsden Hospital as my local hospital cannot offer these treatments. I don't know where you live but other cancer specialist hospitals may also be able to offer something.

Best wishes

Sharon

[blue100]

It seems there is a contradiction if the CA125 is improving but the CT scan shows new activity. As already suggested, being referred to a big cancer hospital such as the Royal Marsden could be helpful for a second opinion or to discuss other treatment options. This is a relatively quick process and I think your friend could be seen in about 2 weeks.

All the best

[sammyH]

Thanks ladies...

Sharon who have certainly been on a journey...can I ask when ou go to your appointments...does your specialist provide you with positive suggestions for the course of your disease?

I know you have been on a few trials but it looks as though as soon as it is obvious one isn't working...they get you on something else quickly..

[sharonforce in reply to sammyH]

Yes, they are always very positive and so far have always had something else to offer me. I realise that one day this will not be the case, but for now as long as they keep making new drugs I will keep trialling them. I always cling on to the hope that this next trial will be the one that works on my particular cancer. Also, I feel like I am giving something back that will benefit patients in the future.

If you want to look at all the trials available you can go to clinicaltrials.gov It is a search engine of all trials worldwide but you can narrow it down geographically, by type of cancer or by treatment.

best wishes

Sharon

[totty]

Definitely seek other advice, even ask for a proper explanation or another opinion. I sometimes think Drs in general forget it's a job to them but it's our body, thoughts and feelings they're dealing with.Wishing your friend goodluck in finding an answer and hopefully more treatment .Totty