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Starting ROSCO trial December 2020

7 REPLIES 7
Linda Corinne
Member

Re: Starting ROSCO trial December 2020

Hi Karen,

I was on the ROSCO trial but came off it after a few Chemo's as I got a 2nd opinion on my op and was told I should have all chemo before my op. This meant another biopsy so I ended up having 3 FEC and 4 Docetaxol instead as I decided ROSCO wasn't for me. I was having a mastectomy but ended up having a lift basically.

Someone else on my thread from May 2018 was on ROSCO so I can ask her to get in touch if you like?

I think the Docetaxol worked better than the FEC and I may have had a stronger dose. They didn't do ROSCO where I had my op and said the reason was as it wasn't suitable for people such as me. This was just my experience though. Happy to answer any more questions you may have.

Love Linda x

Karden
Member

Re: Starting ROSCO trial December 2020

Thanks Susie, you are very kind and helpful. I have posted on the December chemo starters today as I feel both groups will be able to offer very much needed support, although there's not so much on ROSCO.

I will think of the treatment in chunks rather than as one whole, as you did.

I am with Weston Park Hospital, Sheffield and they have said the same as yours did, best to stay on top of symptoms rather than suffer.

My next oncologist appointment is 29th Dec before Chemo on 31st and I will update my diary each day so that I can have a useful discussion.

I hope you are keeping well and have got back to some of your old life.

I'll look out for you whenever you have time to 'pop in' here.

Take care

Karen x

 

Susie B
Member

Re: Starting ROSCO trial December 2020

Hi Karden

I hope you don't mind but I've just checked to see if you have joined the December 2020 starters and so pleased that you have. You will gain so much help and support within your group. With that in mind I'll try and keep things more ROSCO related. I'm glad you've sought help from your assessment centre. Don't ever think you have to put up with any side effects without help. My hospital, Yeovil in Somerset, gave me just about anything and everything to keep me healthy, the mantra being better to prevent than having to cure. You asked earlier about side effects and after checking back in my diary I found that I missed a few off earlier. Quick tip, write any side effects down and take the list with you on each oncology appointment. Makes it easier too if the trials nurse wants more information. So side effects, which were a bit different to FEC side effects, included aching, low mood, indigestion, fatigue, sore tongue, odd tasting food which I've already mentioned, very mild nausea and further body hair loss including eyebrows but no further loss of hair from my head. Let me explain that I cold capped whilst I was on FEC and lost quite a lot of hair, continued with cold cap on TC and lost none. Infact it started to regrow a few weeks after FEC finished. Throughout your trial you'll receive forms to complete asking about your general mental and physical health. They don't take long to complete, basically just ticks in boxes. You may notice a change in your lump, I called mine Gremlin, after the first or second round of chemo. Mine felt spongey. In my case after surgery the biopsy confirmed the FEC hadn't destroyed the tumour completely hence the 4 rounds of TC. Whilst disappointing I reminded myself that I was on a trial and a total of 8 rounds of chemo was always going to be a possibility. It wasn't too bad in the end and I'm still here to tell the tale. I did find it useful to break each stage of treatment into chunks, chemo, surgery, chemo then radiotherapy rather than looking at all the months ahead in one go. 

My treatment finished in November last year. As I was triple negative and post menopausal I commenced 6 monthly infusions of Zoledronic acid in January which can help reduce the chances of developing cancer in my bones. There's nothing else for my type of breast cancer. I've also joined the Add Aspirin trial. It's to establish if aspirin can prevent or reduce the chance of recurrence. I maybe on one of two differently dosed tablets or a placebo. If you're interested there's information on the Cancer Research UK website.

I hope this bit of information helps. If you don't mind I'll drop by occasionally to see how you are getting on. Being on a trial can be difficult and lonely at times, especially when so few people on this forum have taken part in the ROSCO trial. We are a rare but very brave group of women.

Take care and more importantly stay safe.

Susie B xx

 

Karden
Member

Re: Starting ROSCO trial December 2020

Thanks Susie.

I have spoken to the Assessment Unit at my Chemo unit and now waiting for an out of hours GP to prescribe anti biotics for a urine infection.

Yes, I am HER2 positive but no spread to the lymph nodes.

If I can get rid of the bladder pain I will be ok and can catch up on sleep.

Thanks again.

 

 

Susie B
Member

Re: Starting ROSCO trial December 2020

Hi Karen

Sorry to hear you've had a bad night but things will improve in the next few days. As for the trial I started with 4 rounds of FEC, had lumpectomy and complete ancillary node clearance (ANC) followed by 4 rounds of TC, so the opposite to you. As I was triple negative I didn't have any other treatments with the chemo. I'm taking it that you are HER2 positive. Don't worry about the number of different meds you're taking to help with side effects. If it all gets too much then speak to your breast cancer nurse. You'll probably find that when you have your next oncology appointment prior to your next round of chemo a trials nurse will be there too. She should ask about how you've coped. As for side effects with TC they weren't too bad but were all different. For me I ached for the first few days, food continued to have an odd taste and water tasted foul.

I'll continue with this later as I need to get up now. I'm feeling fine now. It's very frightening but you will get through it all. 

Take care

Susie x

Karden
Member

Re: Starting ROSCO trial December 2020

Hi Susie, 

Thank you so much for your reply.

I have had my first cycle over 2 days, Docetaxel and Cyclophosphamide on Thursday and Herceptin and Pertuzamab on Friday.

The actual process was fine and I had no reactions, which is good.

Although tired, I was feeling ok until yesterday when my bladder started playing up. It feels like sharp knives inside and I have needed to rush to the toilet 5 times overnight, I feel exhausted as I have hardly slept. I have been drinking lots of fluids as advised but the pain is really wearing me down.

My knees, wrists and ankles are aching too, adding to keeping me awake.

It's now 5.30am and I've just taken paracetamol to try and ease it. I'm worried about all the drugs I'm taking on top of the chemo ones.

Painkillers, anti-sickness (which are working well), steroids (3 days), senokot etc.

What side-affects did you have and have you any tips?

How many cycles of chemo did you have in total and how are you now?

I would really appreciate any advice.

Karen x

 

 

 

 

Susie B
Member

Re: Starting ROSCO trial December 2020

Hi Karden

I took part in the ROSCO trial in February last year. What are you most anxious about, the trial or the months of treatment ahead? Let me know and I will try and allay your fears. In the meantime I can promise you that you will get through this and yes it is all very frightening but you will find that you are stronger than you think. I was on here as part of the February 19 group. We still chat every day but on Facebook messenger. I will look out for a reply from you and am happy to help in any way I can.

Take care 

Susie B xx

Karden
Member

Starting ROSCO trial December 2020

Hi, 

Is anyone starting on the ROSCO trial this month?

My chemo starts with TC tomorrow for 4 x 3 weekly cycles and I would like to hear from anyone else about to start.

I'm feeling very anxious and the more I read the worse it becomes.

Looking for moral support.

Thanks

Karen