Icon 8

[baxbird]

Good morning,

Can I post a general question about the Icon 8 trial.

I have been put forward to it, and should start next week. I don't know as yet which protocol I will be following.

I'm just looking for other persons thoughts on the process good or bad.

Being all new to this, I'm being like a sponge soaking up everything and anything news wise.

Thank you

Dawn

[belle2]

Hi Dawn,

My mum is part of the ICON8 trial, she was given weekly carboplatin and Paclitaxol. We were very keen to take part initially as we had nothing to loose, however, she was extremely unwell all the time and spent most of the time in hospital. I must say that she was very unwell before starting the chemo so this may have been why. She had 6 weeks of both drugs but then her Cons suggested that as she had not coped with both drugs, because its the Paclitaxol which gives the bad side effects, he suggested just having carboplatin at the normal dose, which she had and has been fairly well ever since. We are going to see Cons today to get results of mums CT scan.

Best Wishes

Kerry

[baxbird in reply to belle2]

Hi Kerry,

Thank you for replying, I do have some concerns that I will feel unwell all the time, but as I've not had any chemo yet, I don't know how I'm going to respond.

I'm keeping my fingers crossed for your mum and her results today

[ANDE-Wales-UK in reply to baxbird]

Hi Dawn,

I am on my 15th week of icon 8, I have weekly taxol, 3 weekly carbo, it has been time consuming as its bloods every week, chemo every week, my side effects are fairly predictable, I feel fine the first and second day after chemo, then im a bit tired shaky for a couple of days, then fine again, I still have hair although its very fine, I have used the cold cap though, I have had a lot of trouble with my blood levels, had two transfusions and currently having injections for neutrophils, I dont regret taking part as I have been very well monitored znd cared for, I have been able to lead as normal a life as possible,

Let me know if you have anymore questions,

Take Care

Andrea x

[baxbird in reply to ANDE-Wales-UK]

Thanks Andrea

It's good to hear these these things from the horses mouth so to speak. I'm going to use the cold cap too, to see if it makes any difference. I'm concerned about sickness but until I start it's all a mystery!

Love Dawn

[Onge23]

Hi Dawn

I'm on weekly Taxol and 3 weekly Carbo Andrade just had week 6 of 18.

I'm a little more tired than usual most of the time, but I'm also recovering from major surgery so that obviously contributes to this.

The taxol weeks are pretty much ok - I have learnt to pace myself. I find it difficult to sleep on the night of the chemo as I have pre-med steroids. I haven't had any sickness or nausea at all!

The Carbo weeks I am ok for the first day or two, then it really hits me and I'm fit for nothing for about 3 days - couldn't even face having a shower! Also had no appetite and had a significant weight loss. However, I bounced back pretty quickly after that.

My first week was especially bad as I had a reaction to the anti-sickness tablets Metoclopramide - I was exceptionally tired but literally could not sit still, meaning that I could not get any proper rest, I was exhausted. Apparently this effects younger people more than older ones - if you suspect you have this problem contact your unit as there are plenty of alternatives, they switched me to Cyclizine Hydrochloride. This is a very rare reaction but I mention it because it's not necessarily obvious that it's not the chemo that's causing it.

I have lost most of my hair - and will shave of the rest as I've always quite fancied having a spell as a baldie! There are some lovely scarves, hats and bandanas out there - and pretty reasonably priced - I can recommend bohemiaheadware.co.uk and deresina.co.uk - both great value and very quick delivery - I have become slightly addicted to buying but I'm thinking of all the money I'm saving on hair colouring and cuts!!

I have my blood tests at my GP's surgery the day before my chemo, which means it is waiting for me when I get there. The whole process takes a lot longer than they suggest - the quickest I've been is just under 3 hours and the longest was about 5 hours.

I have settled into the routine now, and quite like going weekly, and the continuity of contact with my lovely clinical trial nurse. Although the care is brilliant generally, you are treated especially well!

Keep in touch and let us know how you get on.

Live Andree xx

[baxbird in reply to Onge23]

Ah thank you so much, I feel a lot better hearing things from real people going through this.

I'm waiting to find out which protocol I will be on.

Go in for the obligatory biopsy and ECG etc tomorrow, then they are putting me in the system, so should know soon enough.

Thank you so much for all the information, it really helps to know.

I'm due to have 9 weeks then surgery , then 9 more weeks.

All the best

Dawn

xxx

[Hidden in reply to Onge23]

Hi Andree,

It's good to hear others' experiences who are in a different arm of Icon 8 to me.

Thanks so much for posting the head wear links, the Bohemia one has a small mistake, it's actually:

bohemiaheadwear.co.uk/

All the very best with your treatment & for the future,

Libby xx

[Hectoria]

Hi,

I am on weekly taxol and carbo - tomorrow is week 5. I have found it far easier than I was expecting, although of course some days I am v tired, others a bit nauseous and weird feeling.

For me the worst thing is the lack of sleep caused by the sudden menopause as I wake up every few hours.

Re the chemo, I think if you try and view it positively that will help. For me, I visualise this amazing but very strong medicine, made from the yew tree and platinum from the earth, making me better every day. This has really helped me see the chemo as a positive step in my recovery, and not something to be afraid of.

S x

[baxbird in reply to Hectoria]

Hiya, thank you for replying.

I'm doing my best to stay positive, it's just the concern of the unknown.

Will feel much better in myself when I don't have ascites. If it wasn't for the ascites I would feel no different to normal now!

[Onge23 in reply to Hectoria]

Hi S

I've been given Clonidine for night sweats and hot flushes as I had to stop taking the HRT I was put in after my hysterectomy two years ago. Might be worth mentioning it to see if it's suitable for you.

A xx

[Hidden]

Hi Dawn,

I'm in the Icon 8 trial but am in the standard 3 weekly Taxol/Carbo group. However I am still glad I joined the trial as you are monitored more closely both during & after treatment.

So far I have had minimal side effects. After the first treatment I had a few days of bowel cramps but was given Buscopan and didn't get them after my second treatment. The second time, 3 days after chemo, I had one day of flu-like symptoms, muscle aches etc. and a muzzy head that continued for a few days, but that was it.

The big dose of steroids I have on the day of treatment make me VERY awake & I generally don't get to sleep easily that night. I am then careful to not take my following 3 days of steroids after early afternoon - then they don't affect my sleep. So far I have had no nausea at all and no loss of appetite. I have been able to carry on as normal and am actually feeling great!

I have lost my hair but have a great wig that really suits me and some bandannas/caps - but to be honest I am totally embracing the bald look & have found it very liberating.

When trial bloods are needed they take them when they cannulate me for my chemo. I also have the occasional lifestyle questionnaire to fill in.

I hope all goes really well for you, let us know which trial group you end up in.

Very best wishes, Libby xx

[Izzystep]

Hello Dawn. I was on the ICON8 and finished in February 2013. I was on weekly taxol/carbo. It is a bit of a pain as you have to have weekly blood tests and weekly chemo, so 2 trips to the hospital. however you are monitored really closely and I felt well looked after during the trial.

I suffered with fatigue and nausea but the oncologist reduced my dose and I felt much better afterwards. Better to tell the onc how you feel, but there are loads of drugs that you can take to alleviate some of the nausea.

My veins suffered quite badly and the nurses had trouble fitting the cannula in - give a thought to a PICC line or research on line the benefits of having one fitted.

Yes your hair will go --- but there are lovely beanies or turbans in all colours also you can get a wig on the NHS. I had a "number 1" head shave when I found my hair on my pillow. Not sure where you live but if you are near the big wig/hair shops you can pick up beanies for around £2.00 very cheap in all colours.

Good luck - keep us posted on how your treatment is going.

Love n hugs Izzy xxxxx

[Onge23]

Hi Dawn

Just wandering if you know which arm you're on yet and when the chemo starts?

Thinking of you

Love Andree x

[baxbird in reply to Onge23]

Hiya Andree, starting tonight on arm 3, the weekly both doses. Scary stuff, got to be a grown up for a while!

[Onge23 in reply to baxbird]

Hope it goes ok - don't bother doing the grown up thing - very dull! Embrace your inner child!

Keep us posted

Andree xx