Did they give you any info or reasearch bumff??
He said he would get me some. Im seeing him again in 3 months.
If the trial of 9 weeks shows effective I may be tempted but personally I dont know if 9 weeks would be. Its a tricky one.
I would wait and read the results and why do they think only having 6 months rather than a year is just as beneficial. I think i maybe tempted to still go for a year ( i know its a inconvenience ) but i would be afraid it was just a underhand cost- effective thing ( call me sceptical ) xx
Hi Kim
The same trial was mentioned to me At the beginning, but was never followed up. Si I don’t know if I didn’t fit the criteria for the trial. Do you actually get the choice of 6 months or 12 months? I thought sometimes they just stick you in a computer and it decides on which part of the trial you are on. My thoughts are being monitored long term is often v good for peace of mind and getting little niggles dealt with quickly and I know from an onc source that they think it is highly likely that less herceptin is needed- in the same way that Chemo doses have been reduced over time.
On the other hand I think you have to consider your own dx and whether in your case, tumour size, nodes, grade etc you would rather be over treated than under treated. When I was first asked my immediate thought was that although I really wanted to be brave enough to help others by doing the trial,( and being stuck by less needles was def appealing too) I was too scared and was worried that I wouldn’t get a second chance at this. But then I have a node involved, am not sure about your dx. So in a way I was pleased it was not followed up. Although I might feel differently if I still have loads of treatments to go and you are finished and you still have easy access to an onc and I am battering down their doors.
I am aware that other countries do give less herceptin. It may be worth getting your onc to explain exactly how confident he is that six months is enough, hopefully this trail is just to rubber stamp what they already know. I have heard that it is taking a while to co pelt because women are wary of signing up ( another prick to my guilty conscience) crumbs I have gone on. You can tell I am stuck in the house with my vomiting little boy.
Good luck with your decision.
Debx
P.s. How was your scan?
Hmmm I know what you mean but would they really jeopardise peoples health for the sake of money?!! Could be the gov pushing the trial because of the cost of the drug. There was no pressure to go on it.
Its to see if 6 months of the drug is just as effective as 12. X
I had mastectomy, grade 3 and nodes affected.
He said I was a candidate it for it but as the trial hasnt been done before there is nothing to measure against.
I am down for 12 months so it would be my choice if I was to go for 6 months. Its only been trialed in Sweden and like I said they did it for 9 wks results pending. Thats the only trial they could measure against.
He did mention the effectiveness of herceptin and reoccurence percentages.
My scan was fine apart from they couldnt get a vein first time boo hoo.
Yeah, right! A choice,uhm? I don’t know about you but I’m not sure I like this choice malarkey. I was given a “choice” when I had to decide whether to have a mastectomy or a WLE plus recon and also when I had to choose what chemotherapy to go for ( 6 EC or 3 FEC and 3 TAX). At the time I really wished the surgeon/onc had told me " right, this is the BEST course of action for you…" rather than giving me the choice. What do WE know? We are not the blooming experts!In the end I went on the Internet, read out about the various options and decided. I still wished the decision had been made for me. Because the thing is if things go wrong then WE are made to feel responsible, so to speak. Like in your case, Kim. What if you go for the 6 months trial and the cancer returns? Won’t it always be at the back of your mind " what if I had my 12 months of herceptin?". If I were you I’d have the blooming lot! But that’s me.
Love
Lulu x
Um, thats a bit the way I feel Lulu. I too had to go online to make my ‘choice’ about mx or wle. And we do it at a time when we’re really not functioning on all cylinders too.
I feel for you Kim. Choose 6 months and you MAY be more at risk of recurrance OR 12 months and increase your risk of damage to your heart.
Lots of love sweetie. XXX
On a lighter note let me share my Valentine night with you…and no, don’t you worry. No X rated stuff to share on this wholesome thread…he he
It was quite funny as last night an Italian friend of mine texted me and said: I bet you are having a romantic candlelit dinner right now… Well, if only she could see me! The sad truth was we had reheated pasta from the previous day for our dinner as I had gone to an aerobics class so didn’t have time to cook. On top of that I had a shower when I came back and proceeded to put on my flannelette pyjamas , complete with thermal socks, fleecy nightgown and Svetlana headscarf. Get the picture? So when I received that text let me tell you I was definitely NOT the image of sexiness ! In fact the word “bag lady” springs to mind. How I laughed…Not sure OH shared in the merriment though. Bless! Must try harder next year…LOL
Lulu x
At least my OH gave me the card I saw him drop on the kitchen floor at the weekend. I half expected to get a totally different one at which point I was going to castrate him!
XX
Glad to know you kept the knife to yourself ,Jo! Much as I would have liked to be able to tell, on reading about castration story in the Northern Echo, that I KNEW the woman…he he. Fame by default!
Lulu x
P.S. I got card, chocs and flowers too, mind.
Kim and I have been comparing our follow up appointments.
I have appointments with the surgeon, geneticist, oncologist and plastics team in the next month.
Kim has an appointment with her oncologist but then doesn’t see the surgeon until Sept.
We’re both at approximately the same stage.
I THINK I have 6 monthly checks for 2 years (scan annually) and then drop down to annual checks.
I don’t understand the difference. Mine was triple negative cancer which has a higher recurrance rate in the first 2 years.
Help?
Jo XXX
Hiya
We are such romantics. I got my car valeted ( sp ?). ( card, flowers, chocs and cd too though, bless him)
Hope you are all ok. Vomiting Jack has stopped vomiting in time to go for his pre school jabs this afternoon. Bless him, doesn’t have a clue.ouch
Debx
Since Rads finished in dec have had 2 onc apps and 1 app with the surgeon. I will see the onc every three months while on herceptin. And by choice I will see my surgeon next year to discuss further surgery. My yearly mammo is due next month and I am sure if my liver continues to be a prob they will see me. I get my herceptin at home but do have direct access to the Chemo unit if I need it. So I don’t feel adandoned just yet.
Debx
Hi deb
Which hospital do you go to? I asked about having herceptin at home but the onc said you could only get it if you went private?
Kim x
Glad jacks ok now x
Hi Kim
Am at the QE. Their Chemo unit is v small, so they contract herceptin and some long term chemos out to Healthcare at home. It is certainly more relaxing and means I am not reminded of Chemo each time I get it. I was a bit worried about allergic reactions but my nurse said that they are rare and if they do happen they tend to be less severe because you are on a one to one, they are watching just you so they tend to catch them v quickly, rather than when they are multiple tasking on a big unit. So far so good. Just hope it is working.
Debx
Jacks had his jabs now, got the calpol on stand by, he said it nipped. V brave boy : )
Hi Deb
Aah bless jack he is a brave boy indeed.
Thats great you can have herceptin at home, wish I could 
I have my first on friday, dreading the 6 hr waiting around!
Kim x
Kim my neighbour is having her herceptin at home ( had to have 1st one in hospital but if ok the rest at home ) so I would ask BC nurse
I bet deb was more needle phobic than Jack xx Glad he’s got them all over bless him hope you treat him for being a big brave boy xx
Well i was hoping for a nice relaxing morning before having to go to work tonight, but oh no Daughter ( teacher) rings from school to ask if the sky lantern she had ordered for a Chinese new year celebration / wine evening with parents and kids had arrived … NO spent all the morning on the phone chasing them up getting tracking numbers and phoning dhl gateshead to see if they were there and could go and pick them up personally all to no avail ,so tore round shops and Chinese specialist shops to track down 25 managed to get them at dinnertime so daughter need not panic only to arrive back and DHL had delivered them thankfully left them in the porch so I now have sky lanterns coming out my ears definitely enough to start a towering inferno xxxxxxxxxxx Ha ha kids for you eh why do I get all the running around
What a pain Julie.so if I go on eBay and look up Chinese Lanterns, there will be a picture of you on a mountain of them. I was expecting a quiet week but it hasn’t materialised.
Kim. We had the inbetweeners to watch on lees laptop for my first loading dose, v juvenile and funny. I thought we were going to get thrown out. Had to have a second loading dose ( long story) this time I went on my own and took Harry potter to watch on my pad, much more sedate. Not stressful at all apart from the usual vein hunt.
Dx