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PERSEPHONE TRIAL

10 REPLIES 10
Chick1
Member

Re: PERSEPHONE TRIAL

Hello Waveylocks,
Glad that your ♥ wall has healed. Hope you can reduce on the tablets as well. All the very best to you 🐥 x
waveylocks
Member

Re: PERSEPHONE TRIAL

I did the 9 jabs instead of 18 due to the effects on my heart. Heartening (excuse the pun!!) to hear the results so far are so positive. As an add on my heart wall has healed but have been left withe need for blood pressure tablets & beta blockers.....cardiologist said I maybe able to get off the beta blockers. 

Ali49
Member

Re: PERSEPHONE TRIAL

I have had my 11th Herceptin this week and i asked if there would be a change due to the Persephone trial findings but they said no. Tbey said i will stick to the regime i have started on. Part of me is glad about this as i feel its covering all bases but at the same time i would feel less worried if i finished earlier. Chaffinch hope you are doing ok xxx
Chick1
Member

Re: PERSEPHONE TRIAL

Hello Blueash,

 

I hope you got through your 18 without too many effects.  I completed mine too with some effects but manageable.  Glad to be in a country that can give such expensive treatment as there are obviously areas of the world that you would not get without having your own means. 

 

I know I started looking into things in more detail because treatment bad luck seemed to be following me and I wanted to know what might be the consequences of an early finish so to speak.  I was quite reassurred that there had at least been some research! 

 

Yes, I think there has been varying 9 week studies/observational studies over the years. I did think it was 9 weeks in terms of a treatment once a week (and with chemo)  which would equate to 6 months worth in terms of current number of recommended treatments i.e. 18 over a year but maybe that was another one.  I think the Finnish Studies were also looking at overall cost effectiveness or was that a seperate one when they compared 9 weeks treatment to having nothing at all! I think the original study was in 2006 and reported on in 2011 or something.

 

I think there have been so many things over the years like New Zealand only use to publicly fund 9 week treatment at first saying there was no evidence that 12 month was better for health as well as cost effectiveness.  I think the government overturned this to 12 month treatment later. 

 

There seem to have been such a variety of studies and practices:

PHARE which looked at 6 months and 12 months - I think the 12 month treatment was judged more favourable but it was not cut and dried,  HERA which looked at 24 months -12months-6months (I think the definite conclusion from that one was that there was no benefit to 24 months treatment!).  Another study, SOLD, was funded by the Finnish Breast Cancer Group and PHARMAC in New Zealand. It  looked at 9 weeks compared to 12 months with one of the results being that at 5 years, recurrence was statistically significant in the 9 week treatment group as compared to the 12 month.

 

Oh well - maybe the Persephone results will draw a line under it once and for all.

 

Best Wishes to you Blueash, and all fellow Herceptinites x

 

blueash
Community Champion

Re: PERSEPHONE TRIAL

Hello,

 

I had all 18 injections but in Finland they did a study which showed that 3 injections (so 3 weeks apart spread over 9 weeks) was feasible.

 

https://www.ncbi.nlm.nih.gov/pubmed/21299447

 

Chick1
Member

Re: PERSEPHONE TRIAL

Hello Chaffinch,

 

How lovely to hear from you and glad to hear your treatments are going to plan. 

 

Yes you probably will get the full works as they have more hoops to go through and have  not  formalised any reduced treatment protocols at the moment for UK (as far as I know).  I just thought it could be reassuring for people who maybe don't complete the full works for health reasons.  I know if I had had to give up before all the allotted treatments it would have felt like another blow and another worry!

 

I remember reading ages ago about a claim that 9 weeks herceptin treatment was just as good as 52 weeks!! Not sure if that just meant 3 injections or 9 at one every week!! 

 

Take care and wishing you all the best x

 

 

Chaffinch17
Member

Re: PERSEPHONE TRIAL

Hi Chick1, I’m currently 6 treatments into the 12 months of Herceptin which will be 18 injections in total. I do wonder if they will cut short my treatment or because I was told I’d get the full 18 they will stick with it Health allowing
EmilyA_BCN
Member

Re: PERSEPHONE TRIAL

Hi Chick1

 

You're very welcome, it's no problem at all. Hopefully other people will see your post and may have an opinion to share!

 

Thank you for the lovely feedback too - it's much appreciated. I think that sometimes if people don't get a reply to a post, sometimes it can be assumed that there's no one who's had a similar experience - so we try to connect people where we can 🙂

 

Wishing you all the best

Emily

Chick1
Member

Re: PERSEPHONE TRIAL

Hello Emily, 

 

Thank you for acknowledging my post.  I wasn't really expecting a reply and I am also quite use to giving the kiss of death to posts and threasds 😈

 

I do not require to discuss the matter with anyone,  but how lovely of you to locate someone.  It is very much appreciated and the helpful way you have of responding to this and other  people's posts has not gone unnoticed. 

 

As there had been a number of press releases recently and mounting excitement,  I just thought I would post about it and see if anyone else had any views on the matter.   The current  results  may also give a degree of reassurance to people who had to give up on herceptin before 12 months due to side effects/ other health matters.  

 

Regards and thanks again 🐔 x

 

EmilyA_BCN
Member

Re: PERSEPHONE TRIAL

Hi Chick1

 

It's Emily here from Breast Cancer Care.

 

I'm sorry you've not had a reply yet. One of our telephone volunteers was on the Persephone Trial, and I'd be happy to put you in touch if you want to discuss it. Feel free to send me a direct message on the Forum with your number if you'd like to speak to her, and I'll give you a call to arrange a suitable time. Alternatively, you can give the team a call on 0114 263 6490.

 

Thank you

Emily at Breast Cancer Care

Chick1
Member

PERSEPHONE TRIAL

Hello all,

I was on Herceptin but not part of Persephone Trial.

Just wondering what people think about the early conclusions being drawn. I know that the current results need further analysis etc, peer review and further reseach but some of the reports indicate a move to 6 months Herceptin rather than 12 months for early Her2 breast cancer.

Results indicate 89.4% of women taking it for 6 months were no evidence of disease compared to 89.8% taking it for 12 months.

Sounds very good if it could be reduced to 6 months. Less cost but even better less treatment, less side effects, less heart damage... And also reassuring to people who had to give it up earlier for health reasons.

Perhaps there are some people still on the Forum who took part in the trial, and are being followed up for 10 years.

Well if you did then a big pat on the back as without brave souls as yourselves, we would not discover things.
Regards 🐥 x