Another blip and dont know which way to go..

[Suds0812]

Morning everyone..

So my journey continues.. following a recurrence I opted for more chemo which appeared to have shrunk on at least quiten down cancer... Following this i started the course of Niraparib which i have been on for 3 months, however c125 numbers have raised steadily and now gone from 7 to 46.. so have had a follow up scan and the results show that the fluid is building again although no obvious masses have been seen on any of the other major organs, lungs clear...

Consultant has offered 2 choices...

Chemo again a combination of Carboplatin and Gemcitabine..

Or stay as is taking the Niraparib and follow up scan in 2 months to monitor changes..

I really dont know which path to take.. i feel well in myself apart from mild breathlessness... can anyone share their experiences in a situation like this or how they weighed up the choices..

One last question have any of you fabulous ladies requested your medical reports and scan information and if so how and were you successful.. i find it so hard to retain the information and the start was a complete whirlwind... so i would just like to revist my original notes, with the possibility of using them to look at / explore alternatives..

Thanks for reading and send positive thoughts with love to you all as you continue on your own individual journeys..

Hugs and smiles

Sadie x

[rosebine]

Hi, I get a copy of all reports sent to my GP from the Hospital, and scan reports too.Its a policy of the Hospital to send copies to patients. Maybe ask for Consultants correspondence to be sent to you as well

[Lyndy]

Hi SadieAre you treated by one of the national centres of excellence? If not it might be worth the trip for a second opinion. It just helps to talk it through with someone new. xx

[Eleybelly in reply to Lyndy]

Hi Lyndy, how do you find out which are the National centres of excellence?

[Lyndy in reply to Eleybelly]

The Christie, UCH and St James Leeds werein a group of leading hospitals but also places like Addenbrookes that carry out trials. Depends where you are? x

[Sashay2020]

Hi,Sadie. Regarding all medical records from surgeon and hospital, including post op report ( a real eye opener), I requested my complete record and received over 1500 pages on a USB device. I ended up going to FedEx office and printing everything because it is easier for me to review printed documents. Best wishes from Louisiana,

Sashay

[MarleyZ]

Hi Sadie normally you should get a report from the visit to any of your appts, I get one from my oncologist and surgeon, it describes at onset what the whole diagnosis then goes on to describe the visit and any issues good or bad with possible fixes attached to it.

I had few options after recurrence in April but had opted for op as had growth in groin, on chemo currently as well more options available in terms of choices for that this time round.

Wish you the best in whatever choice you make.

[Neona]

Have requested info on my medical notes several times but it seems to be a closely guarded secret. Managed to nose through my file once in the hospital when the nurse left it by my chair- otherwise been told I can’t look in it!

[Casamimosa in reply to Neona]

That's not true you have every right to see your notes!

[Numi]

I was on Niraparib for nearly 4 years. Last year my CA125 crept up from 18 to 35 over many months. In September, when it hit 35 I had a scan which showed a small new tumour. My oncologist kept me on the Niraparib and a scan in December showed the tumour hadn't grown despite my CA125 increasing, so we carried on watching and waiting as I felt well, but with 2 monthly scans. In April a lymph node had grown but everything was moving very slowly. When my CA125 got to over 120, my oncologist recommended Carbo/Gemzar, as yours has done and took me off Niraparib as I was getting headaches. My headaches stopped but in less than a month my CA125 shot up to nearly 240. I start chemo in 10 days. Niraparib bought me an extra year off chemo as well as the years without evident disease, and kept progression slow when it returned, so I don't regret that treatment decision. Wishing you all the best with whatever you decide. x

[Pianoplayer731021]

Hi Numi, I was surprised that you were on Niraparib for nearly four years. I’ve been on it for thirteen months now with some side effects due to low or high blood counts. I then take a break for a week and then start again. This happened a few times. [Edited by moderator] Sending best wishes with chemo, Donna xx I live in the U. S.