Persephone Hercetin trial.

Hi all,
I am currently undergoing chemo (following left Mx & anc) and as ER++ (8/8) and Her2 i will be having tamoxifen & a years worth of herceptin. I have been asked to join the Persephone Trial, which is based on the thinking that 6 months of Herceptin is as effective as 12 months. I know this study has been ongoing for nearly 6 years, so just wonder has anyone heard of it, taken part etc. It seems a long time to not have any useful information/evidence from, and surely there must be ladies who did 6 months as opposed to 12, several years ago and havent had any further cancer or perhaps they have???.

If anyone has any personal experience of this i’d love to hear about it so i can make an informed decision. I dont want to take more drugs than i need and although there is the school of thought “take as much as you can for as long as you can to be sure”, at the same time there must be some evidence to make this trial appropiate.
Anyway any thoughts would be most welcome.

Cheers
:slight_smile:

Bump

I was told about this trial, but decided not to take part.
There was another study (PHARE) which indicated that 1 year of Herceptin might be better. Here is some information. You might want to ask your onc about this.
ascopost.com/issues/november-1-2012/one-year-of-trastuzumab-remains-the-standard-of-care-in-her2-positive-breast-cancer.aspx

I was asked to think about doing this as well but decided I’d stick to the 12 months! To be perfectly honest, I’d have it for the rest of my life if it stopped the nasties from coming back - even though I’ve started walking like a 90 year old!

Black Swan thank you for your link, it makes interesting reading including the bit about the Drs medical salary partly paid by an arm of Hera. I appreciate you taking the time to respond. Also witchypoo, im guessing the herceptin is causing the walking problem, how long before tje side effects kicked in?.
I wanted to get as much info at I could so thank you. My onc wantsme to have rads after chemo but I haven’t decided whether to or not, primarily because its left side and with herceptin putting my heart function at risk plus not then being able to have rad if the cancer returned on that side means I may opt out of rads and stick to herceptin for the full 12 months.

Many thanks.

I am on this trial and I must say I was relieved to draw the 12 month straw. I had left side mx, nodes clear HER2+ but hormone neg. I had chemo but was told that I was borderline for radiotherapy as margins were clear and it was Stage 2. Like you I was worried about it being on the left side and that it meant taking too many risks of heart damage. I opted not to have radiotherapy as I was having Herceptin for the year and it meant if there was a recurrence I still had this therapy to throw at it. Some on this site disagreed with my decision but I have not regreted it. I have had 13 out of the 18 Herceptin and apart from joint pain and brittle nails there have been few side effects. I am pleased to be on the trial, if only because it offers better follow up.
I did not find it easy to find much in the way of information to support my decision but the Onc and Rads consultant were very good in helping me. I was offered another trial where a computer would decide about rads - I figured this was a sign they felt there was little to gain from it so helped me to decide against.
These decisions are very personal and frightening. I understand the throw-everything-at-it thinking but we are talking about some hefty treatments here that can leave their mark so I feel it is a balancing act.
Good luck with your decision.
Kahren

Hello Kahren,
Much appreciated comments thanks. I suppose a lot of the treatment is a lottery as so many ladies have a new primary or secondaries even though theyve had the full belt and braces attitude. I do have nodes affected so have the “full house” as it were, and im coming round to thinking that the herceptin will tackle the breast cancer cells all over by body like the chemo is, whereas rads are targeted in the area which in theory after the mx and clear margins is cancer free, so i think i’ll give the study a miss, although i do believe just because somethings proven now doesnt mean it cant be tweaked. I always think back to the Thalidomide fiasco where it was shown to be good in treating morning sickness…so science isnt infalliable.
Anyway its been a useful informative thread from my POV so again thankyou to all who took time to respond. Its telling that there doesnt seem to be any feedback from those who did/are doing 6 months and also the trial only needed 4000 partcipants, but has been running nearly 6 years…

Thanks all.

Hi I had belt and braces chemo rads herceptin for a year no nodes affected but was vascular and unfortunately I now have secondaries in my liver ,had more chemo and now on her eptin for as long as it works ,but I would do the same again no problem ,I feel personally you have to do all you can ,and I suppose things could have been worse xx

Hi Geordie,
Sorry to hear youve now developed secondries. I guess thats the concern i have is that regardless of how much treatment you have it can still come back whether new primary or secondaries, so it firms up my feeling for no rads this time (especially as ive had a mx & all the other stuff to boot) but herceptin for the year. Have to say vascular was never mentioned so im guessing mines not?.
I wish you well with your ongoing treatment.

Hi Artemis,

Please don’t guess whether you had vascular invasion … please ask your oncologist. No-one ever told me, and lots of other ladies on the forum also never knew until they asked. I found the details on a copy of my path report! Make sure of your full diagnosis before making any important treatment decisions.

Good luck with whatever you decide. xx

I was borderline for rads but took everything it was only for 3 weeks my chemo was FAC and 12 months herceptin but vascular tends to be treated agressively even though nodes were clear that was 4 years ago now and I was49 so classed as young x

and I had a mastectomy too x

My personal view is that if your onc recommends Rads (or any other treatment) just go for it!
My layperson’s understanding is that pre-emptive strikes are far more effective than waiting to see if it comes back.
If there are some microscopic cells remaining in the area eg in chest wall after mastectomy or breast and chest wall after lumpectomy destroy now them now while they are most vulnerable. Don’t wait until they are stronger or have spread further.
Your onc wouldn’t be recommending rads unless they throught the benefits out-weighed the risks. Or if you still aren’t sure get a 2nd opinion from a different onc. But don’t just go against their advice because you feel that you are already having lots of treatment. It takes years and years of training to be onc, and although I try to learn as much as possible so I can ask the right questions and understand the reasons for everything, at the end of the day, they know far more than I do about cancer treatments.
Of course this does not guarantee that you won’t get a recurrance, but why not shift the odds as far as you can in your favour?

Having said I didn’t go with rads, I would like to be clear that if it had been suggested by the onc I would have had it. It wasn’t mentioned so I asked. This is when I was told I could have it if I wanted but that he (onc) felt it would not really bring anything to the table. The Rads consultant agreed with him. They showed me statistics and I could see what they were saying. It was still a hard decision. It would not really have changed the odds much at all and I am comfortable with the decision I made. I am sure if I get recurrence I will wonder, but I can manage that.
If he had said have it, I would have been first in the queue.

KahrenQ in your situation I probably would have made the same choice as you. If the onc says it’s borderline or you can have it if you want it, but he wasn’t recommending it, then this is exactly the situation when you should just exercise your own judgement. Essentially that is what the onc is telling you to do.

My previous post was about when a treatment such as rads is specifically recommended by the onc.

Hi ladies
Im absolutely terrified about recurrence
Mine was grade 3, HER2+, hormone negative, 2,5 cm and 12 out of 16 nodes affected. have had a left side mx and node clearance. Start chemo on Monday 8 cycles, then rads to chest wall and year of herceptin.

Im confused as when I ask the onc etc whether her2+ is better prognosis than triple negative they say yes as it can be treated with herceptin and thats better than one with no receptors that sits there not reacting to the treatment etc.

However when I look online it says her2+ tumors are the ones that have most recurrence/ secondaries as they are so aggressive. It says other factors increase the risk further of it coming back. They are if grade 3, if nodes involoved , if greather than 2 cm and if age 35 or under. Well apart from being 39 ( so again only just at the other side) Ive ticked all those boxes.

I have 2 young children aged 4 and nine months and am absolutley terrified that its going to come back no matter what I throw at it and there will be nothing I can do to stop it. I cry every night thinking I wont see my boys grow up and begging God not to take me. I like things to be ordered and have answers and cannot stand this lack of control over my own future.
I am going to ask them to take my right breast also when this treatment has finished as I cannot live with this fear but then think if I take the other breast will this B**ta*d go somewhere else which would be potentially worse than if it was a new primary in other breast.

Im so angry this has happened. Yes I know we are mortal but this is the time of my life I should be enjoying seeing my boys and shouldnt even have to worry about the C word yet here I find myself in this surreal world and just keep asking why me.
Can anyone tell me anymore info about her2+ and risk of recurrence etc
thanks
I did everything right . I have never smoked, have ran marathons, been veggie since was 13 and still this has been thrown at me.

Hi artemis17 I have participated in this trial. The positives are the timescales and the monitoring you get. As I am interested in research - I decided to partake.

Chezzap,
Try to put more trust in what your onc tells you than stuff you find on the internet.
People say not google, but personally I can’t help it either.
What I’ve found is that as long as you do take Herceptin, HER2 positive is a much better prognosis than having all receptors negative Also if you have a really good response to the chemo, this reduces your risk substantially.
There are also other HER2 drugs besides Herceptin in the pipeline, but not yet available on the NHS
Would it be worth you talk to your breast care nurse about your fears?

Chezzap,

What sites are you reading about HER2 positive tumours, and when were they written?

You must remember that Herceptin for primary BC is very new, although it has been licensed for advanced BC a bit longer. Many of the statistics on-line, and indeed some of the prognastic tools, do not take Herceptin into account because it was not available at the time. Not very long ago many ladies were fighting for the NHS to prescribe Herceptin nationally for primary BC cases, and eventually the NHS agreed its use despite the fact it costs somewhere in the region of £20,000 a dose. At that sort of cost to the NHS it is highly likely to be beneficial or it simply would not be available to us. My senior oncologist assured me that Herceptin with a Taxane chemo (such as Docetaxel) puts us HER2+++ ladies on an equal footing with non HER2+++ ladies. He knows more than I do, and I trust him. Please try not to worry about this. xxx

Thanks ever so much blackswan and Lola
I just tried googling it last night and that was the article that came up.
I know there are no guarantees in life but I just wish I could be told right you are gonna have 6 months from hell but once its over thats it you are cured and it wont come back. Still cant believe that 6 weeks ago I was lying on a beach without a care in the world thinking how blessed and lucky I was and now here I am minus a breast and soon to lose my hair. Doesnt seem real even now.

Lola am gonna ask for a portacath re our earlier conversations thanks for your advice