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ROSCO Trial - Regrets

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Member

Re: ROSCO Trial - Regrets

Hi

Not sure if anyone will read this but I thought I'd jump in anyway. I volunteered to join the ROSCO trial and in my case the trials nurse and oncologist couldn't have been clearer about the risk of having 8 rounds of chemo prior to surgery instead of 4. Fortunately for me after 3 rounds of FEC, starting on 8th Feb, my own Gremlim has got smaller, so I will have my final round on 12th April, followed by surgery, then 4 rounds of TC. I have also been well aware that I can withdraw from the trial at any time. I've coped well with FEC but that could be down to the Macmillan unit  I'm on which I am sure has the mantra of give anything and everything to counter any side effects of chemo. Must admit I'm not looking forward to going onto the T,  but if I wasn't on the trial I would have had FEC+T  both prior to and after surgery, which would have meant 12 rounds of chemo instead of 8. 

Member

Re: ROSCO Trial - Regrets

@reddi
Thank you for your response to my post. I’ve come to realise that I’m mainly struggling with restarting chemo after the break for surgery and feeling a bit sorry for myself. I’ve got to man up, put the big girl pants on and just get on with it. We are all going through the toughest time and I’m so grateful for this forum and the support it offers. It’s interesting to read your timescale and clear that we will finish around the same time and I will be on tamoxifen and herceptin too. I’ve got fingers crossed that FEC is not too bad, it’s too early to tell yet as I had my first dose on Thursday. So far so good 🤞
Sending best wishes for your surgery and thanks again.
Jacq x
Member

Re: ROSCO Trial - Regrets

Hi JacqB, I thought I might chime in belatedly with another perspective on timing. I'm not on the ROSCO trial but also have ER+ (8/8) HER2+ right breast cancer, but no lymph node involvement. I was diagnosed 2 May, started chemo 29 June, and just had last cycle (#7) this past Friday, 16 Nov. I'll have surgery either right before Christmas or in the first 2 weeks of January, then 4 weeks of radiotherapy in Feb / March -- so nearly the same schedule as yours via ROSCO. (I may have started chemo later due to having bilateral cancer -- left breast isn't HER2+, so wouldn't have had chemo vfor it.) And I will be getting Herceptin injections through August 2019 and then hormone therapy, of course -- you, too?

I am sure restarting chemo is super hard, emotionally. It is so physically difficult -- a real assault on the mind and body. But like Clare, I found FEC to be much easier than docetaxel (though I did suffer from neutropenia during FEC and have enjoyed those lovely GCSF injections -- 10 injections for 2 of my cycles!). I've kept my eyelashes (so far) and have only had thinning of my eyebrows in the last half of docetaxel, so those might stay for you through FEC; however, I did lose my hair on FEC. I hope you find FEC a bit easier than T -- but regardless, you know you'll be able to make it to the other end.

I would also like to thank you for participating in the trial, even though you have personal regrets. The trial itself will be such a gift to future patients -- saving some, possibly many, from half of the current chemo regime. They will be so grateful for your involvement.
Member

Re: ROSCO Trial - Regrets

Hi Pulapula

There would be no point leaving the trial now as it is clear that I need to have the chemo. I just wish I’d had all the chemo before surgery. I’m feeling really well now with new hair, eyebrows and eyelashes and I hate that I’m going to feel like crap and look like an emoji again. All of the women I started with are now having or planning radiotherapy and are nearly done with their treatment, whereas I will be lucky to finish in March. So whilst I am being positive about the situation I will always regret my choice to take part in the trial.
I wish you all the best with your treatment.
Jacq x
Member

Re: ROSCO Trial - Regrets

Hi JacqB,

 

I'm sorry to hear you have regrets about joining the trial, but did you also know you can change your mind at any time and leave the trial? Any trial is the same - it is your choice. If you do leave, then they would just do what is best for you given your circumstances, so might be worth asking? Might mean radiotherapy rather than chemo?.

 

I joined the ROSCO trial in September, and have had 3 FEC so far. I did think about leaving the trial a week or so ago, and asking to go onto the usual treatment which would mean i'd now have 3 T. But that would mean I would be having T over Christmas and NY. This way I will have my final FEC next week, then a break before surgery which I expect to be in Jan. I'll deal with whatever comes after that in the new year.

 

 

 

 

 

 

Member

Re: ROSCO Trial - Regrets

The trial split treatment 50/50 with half receiving T first and half FEC. The purpose is to find out if it’s possible to give one or the other instead of both by analysing which tumours respond to Taxanes and which to anthracyclines. If I’d had a complete response to docetaxel I would have stopped chemo after four rounds. Unfortunately I didn’t so the FEC is given.
Enjoy the massage
Jacq x
Member

Re: ROSCO Trial - Regrets

If you can get through Docetaxel and neutropenia you can get through anything JacqB!  My body doesn’t tolerate the taxanes well.  I developed hand/foot syndrome after first docetaxel and on Paclitaxel I have peripheral neuropathy so had some delays and now I’m on an 80% dose.  I do hope FEC is kind to you.  Interesting that they do the T first on the trial.  I wonder why?  

 

Onwards and Upwards indeed!  I’m off for a free massage today via the Ellie’s friends charity. It will be good to be prodded and poked around for a ‘nice’ reason and not something medical!

 

Take Care

 

Clare xx

 

 

Member

Re: ROSCO Trial - Regrets

Hi Clare
Thank you for your kind words and support which are very much appreciated. 😊

Wow! I can’t imagine having to have chemo every week. No chance of normality at all. I will keep fingers crossed that you have no delays and finish your marathon on time. Here’s to a chemo free Xmas for you 🤞

I will be having four rounds of FEC. I’ve done four docetaxel and that was rough, I got very neutropenic on it and I hated the Filgrastim injections. I hope I don’t have to have them with FEC.
I can see a tiny glimmer of light in the distance and as soon as I can I will be booking a lovely holiday.
In the meantime, onwards and upwards it is 💪💪
Thanks again
Jacq x
Member

Re: ROSCO Trial - Regrets

Hi JaqB

 

im not on the ROSCO trial but just wanted to say I do feel for you having to go through more rounds of chemo.  

I was on 4 x AC then supposed to do 4 x T.  Problems with docetaxel  meant I was transferred on to 9 weekly Paclitaxel and I still have six more weekly sessions to go (if I have no more delays).  I also have to have bloods the day before each session. Im at the hospital at least twice a week and usually more.  So bored of the place! What drug will you be on for the next 4 cycles.?  I am hopeful to be finished before Christmas.  I can see why you are so utterly fed up especially as your treatment will extend into  next year.  My hair has been growing back and I think I’ve heard from others that their hair started growing back on the second half of chemo.  Hope you manage to keep yours.

Just wanted to send hugs.  We’ll get there eventually!

Take Care Clare xx

Member

ROSCO Trial - Regrets

Hi
I was diagnosed in late April with T1 grade 2 Er+ 8/8 HER2+ right breast cancer with lymph node involvement. I was offered the opportunity to join the ROSCO trial. The purpose of the trial was clearly explained to me and I thought I understood the implications of joining the trial. I didn’t! What no-one mentioned and what in my overwhelmed state of mind I did not take on board, was that being on the trial might extend the length of my treatment. If I had known this I might not have taken part. I am currently waiting to have four more rounds of chemotherapy and the hardest part is that I feel so well at the moment, I’ve recovered from the first four rounds of chemo but I know how awful I am going to feel once treatment begins again. I’m also going to lose my hair again, it’s grown back a lovey silver colour and I think I will miss it more this time round than the first. I just wish I’d had all of the chemo in one go as I would now be planning rads and nearing the end of active treatment. As it is I will be lucky to be done by mid March next year. I know that if I had been one of the patients who’d had a complete response to the first four rounds of chemo I would be feeling very differently about my situation, I just wish someone had pointed out that my decision to join the ROSCO Trial could possibly extend treatment time by quite so much. It’s ironic that now I’ve been through this, I know the questions I should have asked and didn’t. Thanks for listening, sorry it was a bit of a whine!
Jacq