Has anyone been on/currently on ROSCO trial?

Hi there, not sure where this thread belongs so trust it’ll go in the right slot!
I would like to know if anyone has been on of is currently on the ROSCO trial?
I’m just about to start my 4th & final (hopefully) Chemo & have some questions only those on he trial would be able to help me with.
Regards jo xx

Hi atomicjojo, 

I am sure if any users have experience of the ROSCO trial they will be along to show their support. In the meantime our team of experts are here is you have questions and would like to talk things through. 

You can reach them through our helpline on 0808 800 6000. The opening hours are below. 

Monday-Friday, 9am-5pm
Late opening Wednesday 9am-7pm
Saturday, 9am-1pm

Best wishes, 

Lizzy 

Hello Jo,

 

I’ve just seen this thread. I’m in the ROSCO as well.

 

Mary 

Hi Mary! How far in are you? I’ve finished my 4 TC (arm b) now getting ready for surgery on 6th Jan. How are you feeling about everything?
Jo xx

Wow Mary you must be due your results any day now! Hope your Christmas wasnt affected too much.
I had appt with bc nurse today for pre op info. She said in her experience, it’s highly likely I’ll need more chemo. I’m ok with that in as much as I’ll do whatever I need to do to stay alive! Another 12 weeks out of my life though & not earning but will cross that bridge when I come to it.
How are you after your surgery anyway? Did you have any issues? Xx

I think it was because of the size of my tumour-was 35mm now 14mm & lymph undetectable on scan- so although it’s shrunk, probably not enough. I’m happy to wait for post op results & go along with whatever they recommend.
I’m having WLE & axillary clearance on 6th Jan. Ugh. Follow up appt for results on 19th Jan. Just want to get on with it really! We’ve got a few days in Munich for new years to look forward to first!
Where abouts in the country are you Mary? It’s interesting that only a few trusts do this trial!

Do you have any news yet Mary?
Happy new year to you by the way!
Xx

Hi Jo. My results were good. The shock and relief is overwhelming. There was the tiniest residual amount of cancer cells from the shrank tumour during surgery but oncologist is happy for me to have radiotherapy to blast that away. I know you have surgery tomorrow so I hope all goes well. Please let me know how you get on when you’re able to x x

Brilliant news Mary! I’m so happy for you and what a relief!
Yes surgery for me tomorrow. Packing my bag as we speak even though I’m a day case. I like to be well prepared lol!
You’ll have to let me know how the rads go. Just the thought of having them makes me tired.
Take care & I’ll let you know how it goes
xxx

Thanks Jo! Stay in touch x x

Hi Jo. How are you getting on? x

Hi Mary,
I’m not too bad thanks! Arm feels oddly not mine but no pain in boob (which is now smaller than it was!). Felt something ping in my armpit during the night & today everything feels stiff so not sure what’s going on there! I’m still producing fluid through the drain but hope to have that removed on Friday. I think I’ll feel better once that’s gone.
Results on the 19th so just over a week to go! Not nervous really, if I need more chemo I’ll be disappointed but am prepared to do whatever I need to do to stay alive! That’ll be the FEC & unfortunately will lose my hair again just as it’s starting to grow back.
Hope you are recovering nicely! Have you got info on the rads yet? I was advised to have them late as poss in the day so I can go home & chill rather than go to work.
Keep me informed!
Xx

I’m pleased to hear you’re recovering Jo and not in a lot of pain. I’m sure you will feel better once the drain is out. I have appointment with surgeon on Monday and that will be four weeks post op for me. Hoping rads can start at 6 weeks. I’m healing nicely although I did get a call to say the echo I had post chemo 3 showed I have a leaky heart valve. I don’t know if I had that prior to treatment… I’m waiting for a cardiology appointment to find out. I’m trying to keep busy but running out of things I can do. Hoping I’m on the homeward stretch ? x x

Hi Mary
Just a quickie to wish you well tomorrow. I’ll be interested to see how long everything takes as I’m hoping to be back at work by then & will have to fit it in to my working day.
I expect it’ll be over in a zap!

Jo xx

Hello Mary!
Oooh glad it’s going good for you. I’ve heard it’s tiring. I had my appt with the radiologist & I’m having 3 weeks followed by 1 booster week. Has it affected your skin/boob yet?
I’m doing ok. Started the fec last week which made me very nauseous & I’m tired. Standard really! But onwards & upwards. At least I know I’ll be fine by June .
Jo xx

greatful to find this thread ,  just started the registration for the ROSCO  trial not sure if its the right way, i .will be staring chemo soon, how was your chemo , hope you are well

Hi Jay!
Looks like there’s only 3 of us! Mary has finished hers & I’ve got 1 more chemo on Friday & I’m done Yay!
I had the TC first, was good, really did it’s job but yes there are side effects obviously & everyone is different. Tumour shrank alot after just 2 cycles & I could no longer feel it. Surgery was not too bad. Worse bit was having a drain in for 10 days.
Then on to the FEC. Which ive hated. Again everyone is different & I’ve not had it as bad as some ladies.
Let me know if you’re unsure of anything. I’m more than happy to chat.
One thing I will say is it’s a long slog. Bear that in mind if you are employed & check how long your sick pay will last (mine ran out!). It’s tough on you too. It’s added 6 weeks to my treatment and I’ve lost my hair for the 2nd time. By the way it grew back fairly quickly after the last chemo of the first 4 TC. But heartbreaking to lose it all again.

Let me know how it goes & when you start. It’s really important to be able to talk to someone who’s been through this c**p

Take care
Jo xx

Hi Ladies…hope you are all well xx   I am also taking part in the Rosco Trial.     2 cycle of chemo done (FEC) 3rd next week…fingers crossed FEC has worked   Had the added complication…my Mirena coil has to be removed…cant’t find it lol

Hello Maggy!
How is it going for you? I hated fec as I had the TC first & got on ok with it. Fec made me feel ill! I can assure you that it will be working though. You should be due for an ultrasound soon I think? I couldn’t feel my lump after 2 TC & at surgery it had halved in size plus only one node involved thank god.

Are you planned in for surgery yet? You’ll feel alot better about things when they cut the bloody thing out!

Sorry to hear you’ve losteonecrosis your mirena. Do you have any idea where you lost it? I hope you find it soon… ?

I’m halfway through my radiotherapy now but feel free to shout out if you need any help (or sarcastic comments)

Jo xx

Sorry losteonecrosis? Erm that should be lost obviously. Sausage fingers & no glasses on!