ICON trial

[ZenaJ]

Hi all, I have been on this trial for 6 years and the results show that the three weekly Pachyarel and Carboplaton is the best way for chemo. Well actually there wasn't much difference in weekly to three weekly. In fact, weekly showed lower white blood cells and higher risk of nerve damage.

Longevity and recurrence is yet to be established.

So, anyone on the three weekly chemo can now know that they're on the best possible.

Hope this helps someone.

Love to all, Zena xx

[Lyndy]

Thanks for being a guinea pig Zenaj ... you and all you others who are on trials deserve our gratitude for going the extra mile in the name of research ❤️

[sticky3006]

Does that mean you've actually been on those drugs all that time? Thats amazing if you have!

thanks,

Sticky3006

[ZenaJ in reply to sticky3006]

No not for ever just during the usual 18 week chemo sessions then filling out forms every six months. Nothing to it really. xx

[Boot1947]

Thanks for that, Zena. I was actually on the weekly carbo/taxol regime back in 2014 and have now been NED for five years. I did have a lot of problems with low neutrophils and had to have a blood transfusion and I still have some neuropathy, not painful, in my feet - in the end, chemo was stopped six weeks early, but it does seem to have worked, which is the main thing! Good luck to everyone on the regime. Deb xx

[ZenaJ in reply to Boot1947]

Sounds pretty much the same as me Deb. 2 blood transfusions and the same with my feet especially in cold weather. I take an Amitriplyline pill for that. xxx

[Tesla_7US]

Zena, thank you for generously sharing this information. Your knowledge and that of ALL the brave women on this forum, helps me to formulate questions and get answers from my oncologist so I can make informed treatment decisions. 👍❤🍀🤗

[ZenaJ in reply to Tesla_7US]

Thank you. It was nice to get the results. I've done paid drug trials previously and you never get any results. xx

[Tesla_7US in reply to ZenaJ]

Maybe the results on other trials would be upsetting to participants.😔

[ZenaJ in reply to Tesla_7US]

Could be. You didn't even get to know if you were on the placebo or the real drug. It was part of the contract to not hear the results for the ones I was on. xx

[Tesla_7US in reply to ZenaJ]

I've been on two in US, not for cancer drugs, and gotten written results from both.

[ZenaJ in reply to Tesla_7US]

I'd have liked to have known the outcomes of mine. You were lucky. xx

[Lindaura]

Dear Zena,

I am very interested in these trial results, but I can find no mention of Pachyarel anywhere else.

Is that really the name or is it a spell checker problem?

Thanks,

Laura

[ZenaJ in reply to Lindaura]

I think so Laura. It was the usual that everyone has. Sorry about that. xx

[Tesla_7US in reply to Lindaura]

Paclitaxel

[Cropcrop]

I also did this trial in 2014, the total aim of the trial was to try to reduce side effects of the drugs to make the treatment more bearable to the patient, the drugs were already a known quantity in their efficiency for many patients because of previous trials carried out and ongoing administration. The trial was a three arm trial, the control group had the existing three weekly treatment, the second arm had weekly taxol and three weekly carbo (me) the third arm had both drugs each week. The arm allocated to the patient arm was randomly picked by a computer. Obviously the total dose of each drug administered in the whole course of the treatments were the same.

As I read it, the results show that the side effects when on weekly taxol and carbo were slightly improved dependant on which arm of the trial they were on, the rationale being the dosage was less so the treatment was less arduous but the cumulative effects of the drugs were the same by the end of the 18 weeks, the end results of the treatment were possibly no different (we’re all different and respond uniquely) and not expected to be but fellow patients I spoke with whilst having the chemo on this trial felt they were being monitored more closely and found this comforting but some found the weekly hospital visits a bit difficult. I am still being monitored and will be for the whole 6 year period the trial covered.

The treatments have a known benefit but as with all drugs there are side effects and some are more pronounced in some patients and their outcomes regarding this are unknown until the treatment is given.

I hope that by taking part in clinical trials that one day we are able to help others have easier treatments with good outcomes and that our medical professionals are able to, one day, find a cure for our disease. ❤️Xx Jane

[ZenaJ in reply to Cropcrop]

Thanks Jane. A far better explanation than my quick sentence. xx

[Boot1947 in reply to Cropcrop]

I have a feeling my weekly doses caused fewer daily side effects - I was never nauseous, or tired and my immune system withstood a lot of unpleasant germs, but who knows? I also believe that taking part in clinical trials will hopefully help others further down the line. Deb xx

[ZenaJ in reply to Boot1947]

Me too Debs. xx

[Maxjor]

OK--stupid question but three weekly--does that mean every three weeks? And is Pachyarel in the family of taxol (to Laura's question about what is it?) Wow--6 years--your results are amazing. Great for you Zena! oxoxo Judy

[ZenaJ in reply to Maxjor]

No questions are stupid Judy. Yes once every three weeks. I don't know what I was looking at when I typed Pachyarel but it is the usual taxol/carbo. xx

[Tesla_7US in reply to ZenaJ]

Paclitaxel

[Tesla_7US in reply to Maxjor]

Paclitaxel

[ZenaJ in reply to Tesla_7US]

Thanks. I told some one the other day I still have chemo brain. xx

[Tesla_7US in reply to ZenaJ]

Yes, I have chemo brain too. It's permanent. 🤯

[Cropcrop in reply to Tesla_7US]

Me too 🤪

[Solange in reply to Cropcrop]

Me too! 😊

[ZenaJ in reply to Tesla_7US]

We all agree then but I can't remember what about. ha. ha xxx