Hi ladies
I am on my penultimate chemo (whay-hay!!) and will then start Herceptin. I have heard of the Persephone trial where ladies are given Herceptin for 6 months rather than 12.
This has not been offered to me as an option as yet but I am interetsed in being part of this trial if possible.
My diagnosis was Stage 1, grade 2, node neg, clear margins, 8/8 ER+, PR+, HER2+,
I will have had WLE, SNB, 4 cycles of FEC, 20 Rads, Herceptin and then 5 years Femara.
Is anyone else on Persephone or does anyone know much about it?
Hi
I am on this Trial. I think your hosptial/hospital trust has to be enrolled (or you could ask them to enrol possibly). The info can be found by googling Persephone Trial Warwick University. If you fit the criteria you can be enrolled even after you start the Herceptin as long as its in time before the 6 months deadline. If accepted on the trial then you are randomly allocated the 6 months or 12 months by computer.
I was allocated 12 months so just going with it (though nothing to stop me dropping out after 6 months and refusing the second 6 months if I chose - though that would not really be fair to the trial).
There was a French trial that closed in May 2011 but has not reported the results yet. Its called Phare herceptin trial.
Best wishes OrangePeko x
Hi,
I’m coming up to my last 3 infusions of Herceptin (out of 18 over 12 months) Yay! If you are asked to participate, the people running the trial at your hospital would be back in touch to let you know if you’re on the 6 or 12 month trail.
If I remember rightly, your details are put through a computer, and so that they have a good spread of ages, types of breast cancer, treatments needed etc etc, you will then be allocated to the 6 or 12 month group. It’s to make sure they are making a real comparison between all the eventualities.
There speaks a person who can’t remember any of the medical terms - sorry! I was allocated to the 12 month group. Was a bit gutted to say the least. But as it will hopefully one day help reduce the incidence of breast cancer, I wanted to do my bit.
All the best with the next stage. I’ve been really lucky and not had too many side effects, I hope you’re the same.
Pippy xx
Hullo Mic929Bea
You asked if Chemotherapy is painful. I can only reply from my own experience. When the drug goes in it does not hurt though it may sting a little - if it stings tell the nurse so they can check the needle is correctly positioned. It can hurt a bit just for a little while while they put the canula needle in your vein, but I found I got used to it. Ask your nurse or clinic for written information about the treatment if you have not got it already.
There is a Chemotherapy section on this forum that you may find useful - check the menu on the left of the page and under Treatments and side effects you will see “Undergoing Treatment: Chemotherapy” where there are lots of tips to help you through and people asking questions.
Good luck with your treatment
Hullo PP and PSS (what fantastic names! All the best for your treatments. I have had 4 of 18 infusions and no problems so far. Will have echocardiogram soon.
Orangepeko xx
I’ve been offered this trial but from a purely selfish point of view I don’t really see the benefits of doing it. If I don’t opt for the trial I still get the option of stopping at six months, but if I do opt for it I don’t get the option of doing the 12 months (assuming the computer gives the shorter time). Given I won’t know how herceptin will impact me before I start taking it I don’t really want to burn my bridges on having the longer treatment. I might find the treatments a breeze and think that it’s better to be safe by doning the full 12 months. Usually with trials there’s some extra drug or whatever that makes them potentially beneficial but this one just sounds like free Guinea pigs. Am I missing something?
Hi ladies,
I hope you don’t mind me joining your thread. I have 2 more chemo’s to go then will start on herceptin. I guess the question now is which one do I go for 6 or 12 months? 6 months is much more appealing but I can’t help but feel that if I do it for 6months and it comes back I’ll always wonder ‘if only I’d done the 12 months…’. But then I don’t want to put extra damage On my heart unnecessarily . I hate making choices like this. I just want to get over the chemo and get on with my life.
Hannah x
Hi there. I was offered the trial, but refused it. Like you, Hannah, I knew that if anything happened in the future having only had 6 months worth, I would always wonder what if. As it stands, I now only have one herceptin left. I can’t believe how quickly the time has gone over and the scans have shown my heart function hasn’t been affected at all. It’s so hard being faced with all these decisions isn’t it, when all you want is someone to tell you the best route.
Paula x
Hi
I have my 18th and last herceptin next week, and had my 6th muga-scan last week (these check on the pumping action of the heart to make sure that herceptin is not causing any damage just in case you don’t know) so no fear of my hospital not keeping a good check on me!!! I also worried initially about any effects on my heart, but you are so well monitored and the benefits of herceptin far out-weigh the risks.
Can I just point out, Hannabanana, that if you opt to take part in the trials you have no say in whether you go for 6 months worth or a year’s worth - the only choice you have is whether to agree to take part in the trial. You have to be selected. I decided to have the ‘Full Monty’ and, strange as this may sound, I will miss my 3 weekly visit to my MacMillan unit - I have had the very best of treatment from the wonderful team at the West Suffolk Hospital in Bury St Edmunds.
Good luck to you all whether or not you choose to take part in the trials, and whether or not you are selected.
Evening ladies,
Thank you so much for getting back to me. I think I’ve already made up my mind but it’s nice and reassuring to here others perspective on it.
I did read that if you opt for the trial your name and treatment plan is indeed randomly selected Mazzalou.
So far I have done and gone through everything the Drs have told me to do… Mastectomy and chemo (plus tamoxifen later), and I know that if my echo’s reveal the heart is having a hard time then the hercptin is stopped until it recovers. I just hope my poor veins last for 18 sessions. I understand the herceptin isn’t as harsh on your veins as the chemo. I would be very gutted if I had to have a picc line. I’ve tried my hardest not to look like a cancer patient ( cold cap) and a picc line is just a wee bit obvious not to mention totally impractical as have a 21 month old baby who likes to be picked up. I wonder if they would do a port cath. I guess I will jaw to wait and see.
Thank you again for getting back to me. Have bloods tomorrow and then chemo 5 on Wednesday… Has certainly gone fast.
I hope your all well. Enjoy your evening love Hannah x
My veins gave out whilst having chemo so in went the port and life was so much easier. If you are on herceptin then a port makes much more sense as it is under the skin so free from risk of infection - not to mention 21 month old babies! Picc-lines have to be flushed where as the port doesn’t as it is accessed every 3 weeks. My port comes out on October 10th and it has served me well since it went in.
Good luck with chemo on Wednesday and then only 1 more to go! Nearly there now.
xx
Hi H B
I have very fine veins apparently so struggled with chemo, my chemo nurse did want me to have picc line but I declined with Onc’s backing. whilst chemo has to administrated in the hand/ wrist Herceptin can be Iv’d in the " crook" of your arm, so gives the hand veins a break
I have just had my last Herceptin yesterday, 16 out of 18 all went into the same vein in crook of arm.
Good luck
T x
Thanks ladies… If they can do a port ( will cross that bridge when I get to it) then that’s what I’ll go for.
Right, off for bloods and a morning of house work followed by a complete afternoon rest.
Good luck to any of you and I hope your SE are minimal.
Enjoy your day
X Hannah
Hi hannah i
I-thought the same and I have opted the year …it’s a pain But what if it comes back?
I also start radiotherapy tomorrow too…not looking forward to an of it but it can’t be as bad as the chemo…that was awful.
nicky
