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Has anyone been on/currently on ROSCO trial?

83 REPLIES 83
JacqB
Member

Re: Has anyone been on/currently on ROSCO trial?

@cancerbeater53
Congrats on your clear mammogram, what a milestone. Love your attitude.
Stay strong 💪🥊 💕
Jacq x
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

One year ago today my life changed massively, I was diagnosed with breast cancer.. it changed me I'm not the same person I look in the mirror and see some of old me.. new me doesn't want upset with family or anybody & I don't want work crap just a good work life balance & if I don't get that soon after nearly 8yr at my job I'll be off... that's sad but I'm the priority now ME & MY body.. let stress go..
I'm now stronger, more positive with an even better healthy eating plan. Nothing was ever going to beat me even on my worst day, which still upset me as the bad days were truly bad. But cancer can f**k off I've done my time and had my first clear mammogram plus I'll take the **bleep**ty meds 🤬 because I'm stronger than cancer. I'm back at gym doing some personal trainer on Sunday I'll get him to work me hard! I never want this again. 🖕👊 x
JacqB
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Pat73
Sorry you are having a tough time. It might be a good idea to have a look at the September Chemo Starters monthly thread. It’s good to discuss treatment with people in the same boat and everyone is very supportive. The ROSCO trial itself uses standard chemo drugs so there will be people on the same drugs as you.
Jacq x
Pat73
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi I have just started the roscoe trial treatment I have 3 more to go does it get any easier as I am struggling with the first treatment at the moment I feel rough.
JacqB
Member

Re: Has anyone been on/currently on ROSCO trial?

Thank you Cancerbeater53
I’m home now resting and being looked after by my OH. Fish and chip supper tonight as he doesn’t cook.
Jacq x
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

Hope all has gone ok with your surgery x
JacqB
Member

Re: Has anyone been on/currently on ROSCO trial?

@cancerbeater53
Wishing all the best for today 🤞 it must be a worrying time, I can understand the sleepless night!
I’m due to have my surgery on Monday and have been told to expect four x FEC to follow in a few weeks. I’ve been told that my tumour responded well to docetaxel but has not gone completely. I feel it was worth a go at only having four rounds of chemo, My only regret about joining the Rosco trial is that it has made the process much longer. My fellow May chemo starters are all having their last chemo and I feel I’m way behind. But it was my choice and I have enjoyed the break from chemo. I Hope your mammogram goes well today.
Jacq x
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

I'm having my first mammogram today I'm slightly nervous & not slept very well 😔😔😔😔😔 it's 11 months since my diagnosis.
atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Linda
I had all 8 cycles of chemo on the trial. 4 x TC then surgery then 4 x FEC then radiotherapy and stared on Tamoxifen during rads. I've since been switched to Anastrazole.
I know that some ladies only have 4 cycles. It all depends on how well you respond.

How many have you had so far?

Jo xx
Linda Corinne
Member

Re: Has anyone been on/currently on ROSCO trial?

Thanks - just seen this. How much chemo did you have? L x

Linda Corinne
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi,

 

Soz just seen this - assume you are happy with the result? Also so didn't you need any more chemo after the first 4 cycles? Thanks.

 

L x

atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Hello Linda,
I recommend you join the "May 2018 Starters" under "Going through treatment".
These ladies will be your lifeline believe me. You will all laugh & cry together & support each other throughout treatment and beyond.
I'm still in touch with my crew of February 2017 starters and honestly don't know what I'd do without them.
I had lumpectomy and full ax clearance but no mastectomy so am unable to advise on that but if you want to know anything else, just holler.
Bear in mind everyone is different and will react differently to all treatment but to be honest radiotherapy was a breeze compared to chemo so don't worry about it. I actually had a great time & made more new friends!

Pop back & let us know how you get on...take care
Love Jojo xx
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

I also did ROSCO trial x
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi

I only had lumpectomy & node clearance but I had Chemo first then up then radiotherapy. Rads finished on 28th March and I still have very slight niggly pain on side of my boob & it's swollen up still compared to other. No issues around scar from op during or after rads. I had bit of what I can only explain as bad itchy sunburn but I used E45 body wash that I got from GP & E45 cream. I also used Aloe Vera Gel that I bought from Holland & Barrett which in my opinion was better.

Anything I can offer advice on please ask.

Good luck
Pauline x
maggymoon
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Linda. I took part in Rosco Trial last year, also started on FEC with no issues at all apart from the obvious hair loss 😣   I had my mastectomy in August last year with immediate Diep recon and radiotherapy in October x.  I can't say I have had any lasting effects on my breast from the radiotherapy..luckily.   If you would like any more information or have any questions. Please let me know.   💪😊

Linda Corinne
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi,

I have started on this trial on FEC last Wednesday 2nd May. I have been told I need a mastectomy and am going to discuss immediate reconstruction if it is an option DIEP. I also need to have radiotherapy and wondered if anyone has had this who can advise what the effects of radiotherapy will be after the reconstruction please? 

I would also like to contact others starting out on this trial.

 

Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

Finally rang the bell 2 weeks ago after my last radiotherapy 👍

Not been the best 6 months but I did it and I was the 2nd person to receive full clearance under ROSCO Trial

Pauline x
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

Herceptin number 6 done & dusted 👊💪 off to physio to try help with this dreadful & very painful anxiliary cording. I can lift arm higher but it's not for straightening at all.

Hope you all have a lovely weekend I'm off for a family meal sporting my new wig ❤

X
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

Had my first physio session today, painful but felt great at the same time which I find odd to say 😉 booked in again for 3 more sessions before radiotherapy on 8th March. Physio guy showed my hubby how to massage it so I'm getting him on it 3 times a day aswell 💪👊.. hope your all well ladies x
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

Finally it's my physio in the morning for this awful cording 💪

Just hope he can sort it for me. I think it's gone into side of my boob now 😔
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

Blooming cording getting worse and I'm doing exercises as best I can. Hope physio guy is a miracle worker in Tuesday.

Had a great day vegan lunch in Manchester and a new blonde two tine wig longer one 😘 bought by my hubby and everybody loves it. I look like the old me in it.

Alan is doing Manchester 10k run for macmillian I'm so touched as I didn't know until he had signed up.

Anybody fancy donating a £1 or £2 here's his story, he made me cry but nice tears.

https://www.justgiving.com/fundraising/awhitehead17

Hope your all doing ok ladies.

Pauline x
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi all

Met with consultant today & even though my arm is still very painful I was able to do the pre-scan for radiotherapy. Was quite painful but managed to get arm in position. I'm booked to do my first session on Thurs 8th March at Christie unit in Oldham hospital so it's full steam ahead... all be done by end of March. 👊👊👊
Would have started next week but I already have two appointments booked elsewhere.
Hufflepuff
Member

Re: Has anyone been on/currently on ROSCO trial?

Good on you re the new name Pauline! Very positive. Sorry that you are suffering with cording, it sounds miserable. Hope you get some relief soon.

 

Take care xx

Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

Or should I say can't lift arm or clasp hands behind head 😔
Cancerbeater53
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi

I've finally got booked in for physio next week.

Managing with my own massage for the fluid retention.

Cording still really bad nothing helps even my hubby massaging E45 cream as per instructions I've read.

Seeing consultant tomorrow to talk about radiotherapy but not expecting it to happen as I can lift arm.

Hugs
Was pauly52 x
Acer1945
Member

Re: Has anyone been on/currently on ROSCO trial?

I can't message you on here anymore my access has been denied you have my details if you want to stay in touch
Mum x
pecan
Member

Re: Has anyone been on/currently on ROSCO trial?

Oh, congratulations!  I'm so pleased for you.

Hufflepuff
Member

Re: Has anyone been on/currently on ROSCO trial?

Best wishes for tomorrow Pauly. Will be thinking of you xx

atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Great news Pauline!

 

Get that bloody thing cut out!

 

Lots of love Jo xx

pecan
Member

Re: Has anyone been on/currently on ROSCO trial?

Good luck Pauly.  I'll be thinking of you.

 

pecan
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Pauly.  I'm responding, not because I've had the wire guided lumpectomy, but because I have heard about it from others.  It's really a very thin wire that is placed next to the lump because the lump has become so small they need to know where it is, and can't expose you to x-rays while in theatre for the surgery.  They use a mammogram and/or ultra sound to locate the lump, and put the wire in place, using a local anaesthetic.  the surgery is done under general anaesthetic.  My own lump was large, so there was no mistaking it.  Your procedure seems to be standard for smaller lumps.

 

I can't imagine what the chemo was like, as they told me it wouldn't help me enough to justify the side effects - it's a double edged sword, that.  There is just no telling when we're going to melt.  For me it was the radiation - I sobbed my way through the first 6, for no rational reason.  I think it's fear of the unknown.  Just keep coming back here and there will be plenty of ladies to give you moral support.  Hugs.

Cathy

atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Oh Pauline I do feel for you.
You have what I had apart from HER2 as I'm negative for that.
I has the lumpectomy too. The guide wire is put in during a pre op ultrasound & mammogram, with a local anaesthetic bur the main op with be under a general. To be honest the lumpectomy is not much to worry about but the axillary clearance was & still is a bit of a pain in the arse/armpit!
Not particularly painful, but you lose sensation in upper arm/back which is stating to come back for me one year later.
You will probably have drains in for a week, not painful but an inconvenience. Basically I was glad to have the op. I wanted to get the blimmin stuff out of me. Remember...we do what we need to do to stay alive.
You can do this. Look after yourself & get strong for the op. A positive attitude will see you through the dark days, and this time next year you'll be thinking "wow I did it. Go me"
Take care lovely
Jo xx
atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Pauline,

 

I was told that unless there was COMPLETE pathalogical response i.e. the tumour completely disappears, then I would be having another 4. I was very disappointed when I was told but in the end they are doing whats right to keep you alive for as long as possible.

 

My lump shrunk from 33mm to 14mm on the pre-surgery ultrasound, but was found to actually be bigger than that when the lump was examined after surgery. Luckily the surgeon took a fair bit & got healthy margins.

I didnt respond well to the FEC, it made me quite ill but a lot of other ladies got on fine with it. I actually did better on the TC, which I know you havent so it just proves that everyone is so different.

 

I actually nearly came off the trial after the first 2 FEC (which wouldve totalled 6 cycles in all) because i felt so ill. I dont ever want to feel like that again. But of course after 10 days I started to feel better & decided to just get on with it. I didnt want to regret NOT having chemo at some point in the future. 

 

So even though youve had good chemo results, it could mean that you will still need another 4. I did ask them to reduce the dose to try to prevent me being so ill but that didnt work haha! Try not to overthink it. Your onc will be the one to make the decision & will give you all the facts, but remember that they want to keep you alive and you will recover remarkably quickly after your radiotherapy. 

 

Take care. Im here if you have any other questions.

 

Jojo

 

Hufflepuff
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Pauline,

 

Glad to hear that you had such positive news and now have a date for surgery. I hope that the chemo effects are easing. Take it easy xx

atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Good luck Pauline, another one to tick off!

I've got my first mammogram today. Not particularly stressed about it, just don't want my boob squished as it's still swollen 1 year after op! I'm sure they're used to that though.

Yes let us know how it goes today Pauly xx
Hufflepuff
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Pauline, 

 

Thinking of you at your appointment today, hope it goes well. Let us know how you get on xx

Hufflepuff
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Pauline,

 

Glad to hear that you are feeling a little better after chemo and managed to avoid the hospital! I hope that you have a wonderful family day today. Best wishes xx

atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Paul in I know what you mean about taste buds.

They actually came back fairly quickly for me but in the meantime I did used to eat strong tasting things like pineapple & harbour Tangfastics! I practically lived off satsumas because they were sharp. Ice cream is good too. Try to avoid spicy food though.

The mouthwash given out at chemo also helped alot (Difflam). You'll get there. Nearly done!

Jojo xx
atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Paul in
Sorry I seem to miss so many messages, all in my spam folder!
Anyway I hope you're feeling not too bad right now. Yes those blimmin Filgrastim injections are hideous aren't they? I hated them with a passion. That last one ever though...I did a little jig 😁
Don't put off contacting you're team about your temperature though. I know you don't want to end up in hospital but the reality is you could have sepsis/neutropenia so be smart & contact them sooner rather than later.
Great news that you're only having 4 chemo. I had to have all 8 unfortunately, but I'm glad I had the surgery after 4 rather than the 6 normal treatments!
I also had the full axillary clearance which I've found to affect me more physically than the lumpectomy. Please let me know if you need any support with that. I'll happily give you my number for you to message me directly or you can follow me on Facebook if you prefer.

Jojo xx
Hufflepuff
Member

Re: Has anyone been on/currently on ROSCO trial?

Happy New Year Pauline.  How are you feeling? I really hope that you are not suffering as badly as after your previous chemo. It's good to hear that you have some dates in place re the next stage of treatment. Thinking of you xxx

Hufflepuff
Member

Re: Has anyone been on/currently on ROSCO trial?

Pauline,

 

Thinking of you today as you undergo your last chemo session. I hope that you manage to keep comfortable during the next few days. I'm glad that you had a good Christmas but sorry to hear that your daughter is poorly.

It sounds as though you have a lovely family who are supporting you.

 

Best wishes xxx

pecan
Member

Re: Has anyone been on/currently on ROSCO trial?

I can't compare my journey to yours, but I want you to know I have read your posts, daily as you post them.  I want you to know you are being heard, and while I can't help, please know I am thinking of you.  I have recently finished radiation therapy, and cried all the way through the first 6, and then again for the last one.  I know it's nowhere near as bad as chemo, but I do understand that feeling of helplessness and dread.

(I have been put on anti-depressanst now, to help me cope.)

 

Cathy

Hufflepuff
Member

Re: Has anyone been on/currently on ROSCO trial?

Pauly,

 

I was just reading your posts. I'm so sorry to hear that you are having a difficult time.  I didn't have chemo (just surgery and radiotherapy) but I know how hard it must be, taking its toll physically and emotionally. It's sounds as though you have a wonderfully supportive husband.  I know that it's hard, but remember you are the same you, and you will get through this. Have you thought of maybe having some counselling for additional support?

 

I understand where you are coming from, no talk of cancer over Christmas. This time of year heightens our anxieties and emotions also, which doesn't help. You are still the amazing, lovely person that you have always been.

 

I hope that you have a lovely family Christmas Sending you a hug and best wishes xxx

atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Pauly!
Great news about your response to chemo. I must say the TC is the mother of all chemo's and does tend trick!
Mine shrank by half at the end of first 4 chemo's but during surgery it was found to be larger than the scan suggested. I had 1 node affected and they did a clearance on me too. 13 in total removed, but only 1 had signs of cancer cells still in it. I went on to have 4 more chemo (feckin fec!)

As far as surgery goes, the ax clearance has been a pain in the neck, the lumpectomy is a doddle! I'm also right handed but keep doing the exercises after surgery & you'll be ok. The worst think is having the drains in for so long plus it's all left me with lymphodema in my boob (not my arm thank goodness).

Let me know if you need any advice pre surgery. I thought I'd be up & back at work after 2 weeks but that was slightly unrealistic! Ever the optimist.

Jo xx
CatLady63
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi all,

 

Had my first chemo yesterday, apart from being a really long day, from 9 am til 5 pm, it all went smoothly. The Herceptin made me really cold, and the cyclophosphamide gave me sinus pain and a headache. I was tired!! Slept for two hours when I got home, took my meds like a good girl. Slept badly last night, hot flushes and constant trips to the loo for a wee, which I guess is understandable considering how much fluid they pumped into me!

 

Today I feel okay, no nausea or sickness, a bit of a headache and still feeling tired. Is this normal? When do side effects kick in?

 

Feeling quite positive so far Cat Happy

 

Hope everyone is doing well!

 

Helen xx

maggymoon
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Jo,

 Im good thanks  How are you doing.  Well.....my coil is still a mystery...CT scan didnt find it...to go for another pelvic ultrasound..:)  annoying Little thing lol    Had MRI today to map out my blood vessels prior to surgery on Wednesday next week...eeek.

 

Love and hugs

atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Maggy how are you doing now? Do you have a date for your surgery?

Jo xx
CatLady63
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Jo

 

Yes, 4 teeth was a little extreme, but my dentist died unexpectedly 18 months ago, and finding another NHS dentist has been a nightmare! Luckily my oncologist referred me to the Orthodontics dept where they did the necessary. All to do with the Zoledronic acid at the end of the treatment.

 

I decided against the cold cap, I've read such mixed reports about it, and to be honest, at the moment, losing my hair isn't something that worries me. But just in case it does, I have a wig picked out ready!

 

No one has mentioned steriods, I guess I don't need them? They told me 6 hours as each drug is administered separately, 2 take 90 mins each, the other 2 60 mins each. with a break in between each. The first time is slower as they watch for adverse reactions. I've loaded my iPad with dozens of books and hours of music. Though I am so restless recently not sure how I will settle? If I can get a decent signal I may well be on here!

 

The support on here is great 🙂

 

Thank you xx

 

 

atomicjojo
Member

Re: Has anyone been on/currently on ROSCO trial?

Hi Catlady!

 

Blimey 4 teeth out is a bit much! Presume they were a bit dodgy anyway. The last thing you need whilst having chemo is toothache. 

Good luck for Thursday, I also started on the TC so feel free to ask me anything. I didn't get on too bad with it but I know some ladies who did so fingers crossed for you! It seemed to do the job though, halved the size of my lump pre surgery.

6 hours is a long time...I was only in for 3-4 hours max! Why so long?!! Or are you cold capping? We used to read newspapers & chat with people/nurses/volunteers. You can have a nap if you want 😋. Some people take iPads in with movies downloaded on them, or play games.

It's a bit of a chore but I used to go shopping afterwards (couldn't do that on fec!) then go home & crash for a few days. 

Do you have some steroids to take the day before chemo? Word of advice...take them early like in the afternoon, no later than 4pm or you'll never sleep! Take all your tablets as directed & you should be fine.

Let me know how you get on! Don't forget, just ask me anything. 

 

Cathy...dental treatment is advised before starting chemo but particularly before having the zolendronic acid infusions as it can affect your jawbone. Although my dentist said he'd never seen anyone in his whole career be affected!

 

Jo xx

pecan
Member

Re: Has anyone been on/currently on ROSCO trial?

Gosh, may I ask:  why do you need to have teeth extracted?

Cathy