Icon8b clinical trial. : Hi anybody doing this... - My Ovacome

My Ovacome

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Icon8b clinical trial.

Zena41 profile image
17 Replies

Hi anybody doing this trial ?

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Zena41 profile image
Zena41
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17 Replies
Sorme profile image
Sorme

Hi yes I'm doing the trial I started in 2016 hopefully I will finish in October

Zena41 profile image
Zena41 in reply to Sorme

Hi how are you finding the side effects ?

I'm worried because I have high bo.

But I know there are benefits to this x

Sorme profile image
Sorme in reply to Zena41

Hi I'm not sure what hi bo is but the side effects I'm getting is at the moment is painful joints cramps in both legs tiredness

Zena41 profile image
Zena41 in reply to Sorme

Sorry high bp.

Katmal-UK profile image
Katmal-UK

Hi Zena Is that Avastin?

Zena41 profile image
Zena41 in reply to Katmal-UK

Hi yes. Bevacizumab. Also known as avastin

X

Katmal-UK profile image
Katmal-UK in reply to Zena41

I was on Avastin back in 2007/2008 on a trial and I had high bp. It did raise it further so hospital added amlopodine to my meds. Ive since had my bp meds reduced. They managed mine fine whilst I was on the Avastin for a year xx

Zena41 profile image
Zena41 in reply to Katmal-UK

That's good to hear Kathy

I have high bp and I'm already on losartin and amLodi pine.

My head is saying yes to the trial 😊

Katmal-UK profile image
Katmal-UK in reply to Zena41

I worked full time on Avastin, only taking one day off every three weeks, had nearly 4.5 years remission :)

Zena41 profile image
Zena41 in reply to Katmal-UK

Hi lovely

Yes your my inspiration. And also read anotha lady had 38 yrs remission 😮

Did you have it x3 weekly with chemo ?

Katmal-UK profile image
Katmal-UK in reply to Zena41

I had it alongside standard chemo for 6 cycles then carried on for another 12 doses, 1 every 3 weeks.

Annr5h profile image
Annr5h

Yes I've just finished that trial three weeks ago.

Zena41 profile image
Zena41 in reply to Annr5h

How did you find your bp scores ?

Annr5h profile image
Annr5h in reply to Zena41

My body was always a bit high on beva so they gave me amlodipine. I've finished my last beva 3 weeks ago and the blood pressed is going down so I may be coming off the tablets soon. You don't have a say on which leg you get it's done by the computer. I had chemo weekly. I would recommend the trial as I've had fantastic results. Finished chemo September 2016. Ann x

Zena41 profile image
Zena41 in reply to Annr5h

Also do you get a choice with regards to having it x3 weekly ?

Hi Zena. I've been on 3-weekly Avastin for around 2 1/2 years. Firstly, along with Carbo/Caelyx but then continuing as a maintenance drug. It's been a God-send for me. I've had around 45 infusions and the only side effects I get are a runny nose and high BP. I'd never had high bp before but Avastin gives it to you. When it first began to creep up, I began taking 1/2 tablet a day, which eventually went up to 1 tablet. After time, I needed a second tablet. For the trial I'm on, bp has to be recorded as below 140. I now have my own bp machine at home as my blood pressure is fine at home but always raised at the hospital. So I now record my bp at home for the week before going for my infusion.

As for - do you have a choice with 3-weekly infusions - probably not. For the trial I'm on, I think there were 2 "arms". I was told I ended up with the better one but can't remember what the other one was now. But I think your hospital will decide which arm you're on.

Have to say it's all worked very well for me. Good luck. Pauline.

Agility profile image
Agility

Zena I also have done the chemo plus Avastin. I also had an ok experience with this procotol and avastin. Avastin does raise bp in 30% of people (I got lucky) but they usually do control it. I also got the irritating stuffy nose but that's nothing really; and sore joints like arthritis but moving helped that and it settled. Id go for it - Avastin was the first treatment that held and actually prolonged life. Other stuff is coming along but this is one of the good ones. You can always stop if it doesn't agree with you or help.

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