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anyone starting herceptin 12th aug

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Re: anyone starting herceptin 12th aug

Hi Kay.
Had herceptin no 2 yesterday and it was gt so far. It was nice to have hospital stay halved. I am trying to get my hospital to pay for me to have healthcare at home give me herceptin from next dose onwards.They haven't referred anyone to date so here's hoping. my consultant new nothing about it but was interested. said it would be good for me and passed it onto clinical manager. so lets hope. next dose due 23rd Sept....
weight watchers did go a bit ski wif with the new arrival but i still managed to loose one and half pounds. i had a really bad day yesterday. treatment at 12 and hours drive so no time for andfood to early to eat b4 went. i picked when i got home for rest of day and evening. woke this morning and got to get back on track....
sounds if you had a much deserved day out but what a shame about the car.. i hope you get it sorted. i bet he will be shocked to be traced when thought he had got away with it.........
good news you are OK to start treatment. have you a date yet.. i agree time with no apt is a luxury isn't it. i had 6 weeks off from chemo end to herceptin start and it seemed a lifetime....
have you sent that job application off. what do you do now and what was job for... i don't work anymore.. typical i decided to give up last September and spend time doing house up and with grandson now granddaughter as well. but all that changed as five days later i had my mammogram and this....................... so know work. luckily we have nearly paid off mortgage and now all three children have brought houses etc we are saving a bit.... taken us 30 years. ha ha.
have you managed any holidays. i am starting to look for after treatment but cant decide where to go or who with. a relaxing time with son and girlfriend or hectic time with daughter and family.. this year was going to be a good one for us as married thirty years we were going to cape Verde. and then i was 50 so having a holiday with family to Bulgaria. both of which had to be cancelled.
i did post about my soreness. and everybody seems to be the same so now i feel normal i don't worry... i have also been a lot better since walking round my block (15 min very quickly) my arm seems free er. so perhaps it was exercise i needed not physio..
well best get on. going to sand spare bedroom no 2 walls down ready for decorating. my son and girlfriend have said they will do it. my husband don't get time... i didn't want it started this week as my husband off to work in France for a week and i got my mum coming to stay from Scotland. so had enough going on. still if i say no they would be offended.
take care have a good day.
Julie xx

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Re: anyone starting herceptin 12th aug

Hi Julie,
Congratulations on your new arrival. Bet the champers etc did nothing for the weight watchers plan?!
I am still stuck at a plateau but to be honest I haven't had much time to dwell on it as other things have happened over the coure of the last 2 weeks that are a priority.
We went to Chatsworth country fair on Sunday. Had a lovely time , weather nice and had some "family time" - unfortunately when we got back to the car someone had crashed into it and damaged it then driven off without acknowledging the fact. On the positive .....a witness saw him do it and got his details so I hope it will all sort itself out. It is just what I didn't need to do - all the phone calls ...paperwork etc.
I have had a call from the specialist Herceptin nurse to say that she has had my heart/echo stuff readings back and they are fine to start the treatment. (when I saw her last week they had given her the wrong persons notes....another lady with same surname so couldn't find out at the time).
I must admit it has been nice having no appointments/bloods etc for a week or two. I still have to have my line flushed weekly but I just tie it in with going to the shops and a local coffee morning so no big deal really.
I have been applying on-line for a new job. Haven't pressed send yet. will wait til nearer the closing date.I hope that my work will be able to re-deploy me ' so I suppose I am just hedging my bets really. I have another 4 weeks left of my sicknote and all being well I hope to go back then if they can find me something. What about you....are you back at work?
I would love to give up completely and just do volunteer work etc but need to pay the mortgage and didn't have any protection...
I have booked myself a hair trim next week at the hairdresser inside the Christie hospital....hope she is ready for "action man meets ed the duck",
Saw your post on your sore side so hope you are improving or at least getting the pain dealt with,
cheers for now,
Kay x

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Re: anyone starting herceptin 12th aug

hi Sandra
sorry didn't make it this week and good luck for Monday...i have my grandson for a couple of hours at time but i haven't been up to any longer and it broke my heart as he at lovely are. i don't get much sleep at moment and he wakes up in the night so i couldn't cope... i am busy decorating a spare room. i am working way through house. the next spare room is going to be a children's theme and then perhaps when done i will pluck up courage to have him stay. i was all set to have him when my daughter went into labour but it didn't happen. she had pains at 05.30 went into hospital at09.30 she was born at ten to two pm and home at 5.30 so didn't really effect my grandson or me at all. have a good day. where abouts are you. its dull and a bit of nip in the air today.
Julie

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Re: anyone starting herceptin 12th aug

hi julie
didnt have heceptin today as i have still got chest infection,so having it monday,
congrats on new grandaughter i cant wait to have mine,they also only live a mile away so i see them nearly ever day but love having them to my self.
sandra

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Re: anyone starting herceptin 12th aug

Hi Sandra.
my unit always rings the day before to check how i am. i have had no side efect yet and dose no 2 is due tuesday. i have just worked out its thursday and i am too late replying. i hope if you had it it all went well and you are ok. if you didnthave it whenwill you. enjoy your grandchildren. i have a two year old little grandson and i was very lucky because on sunday i got a little grandaughter. they only live rround the corner so see them daily.
take care and keep in touch.

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Re: anyone starting herceptin 12th aug

hi ladies
could do with abit of advice due tohave first herceptin on thursday,got a cold and nasty cough ive got antibiotics and they seem to be working also due to have my two grandaughters aged 3 and 5 for the weekend [have been looking forward to that for months] not sure if i should delay hjerceptin for a wk hosp said see how i feel thursday morning but i dont want to have it if its going to make me feel worse any thoughts
thanks sandra

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Re: anyone starting herceptin 12th aug

Hi Polly
I didn't have any throaty feeling. I have read you can get sniffles etc. Were you near any air con as that always gives me a throaty thing if their too long... I wish you well keep in touch.

Hi Kay.
I weighed in four pounds less this week so a good start. I had a bad weekend picking etc and that will tell next weigh in.. The reason my daughter gave birth to my granddaughter on Sunday and i had her two year old. So it was snacks sweeties all the nice things. Who can blame us.. So will be strict this week. May even start a bit of exercise round the block nightly. Well its a thought...............

Have a good week all of you...
Julie xx

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Re: anyone starting herceptin 12th aug

Hi all

I had my loading dose last Friday and I have this wierd throaty thing when I breathe, not quite a cough, but I feel as though I need to clear my throat. Herceptin or just one of those things?

Polly xx

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Re: anyone starting herceptin 12th aug

Hi Polly
so far so good with me to. i do get hot and cold flushes not bad and a littleshiver but not sure if thats my age the tamoxifen or herceptin. Its nothing to bother me though. One night i did wake up with funny pains my heart side. It kept me awake all night. but gone next day....The hospital also gave me some tablets to come home with if i felt sick... havent needed them. i had a bad night last night feeling sick butthats as my daughter had pains as overdue with baby....i do worry.... it wont be long before i start feeling a bit funny as dose number 2 is nearly here 2nd.. i cant believe how quickly weeks go... will a year be over before we know it....... lets hope so. i do see on here people get side effects from 5th to 8th but dont read anything else. Chemo was bad. what was your diagnosis as you stopped like me. i stopped after no 4.
take care and have a gt bank holiday.
julie. x x x

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Re: anyone starting herceptin 12th aug

Hi all

Had my loading dose of Hercepin yesterday. It was fine, I don't know what I was worried about. They had trouble finding a vein but that's usual for me. I had to stay for 4 hours afterwards but that was OK, I had a reclining chair, lunch provided and olympics on the telly...............it was almost better than being at work...lol !!!!

I feel fine today, so if it stays like this it will be a breeze.

It's a beautiful sunny day in Staffordshire, hope you all have the sun too.

Polly xx

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Re: anyone starting herceptin 12th aug

Hi Kay
Yes weight watchers. I am doing that one as doesn't involve exercise as such its up to you. I have no energy for exercise programmes... i was about 10st before treatment. I weighed in at 11st 9 she looked by bmi ideal weight and is between 8st 6 and 10 st 6 so making my goal 10 st 6... I will give it three months. But like you with the treatment I have been sitting a lot and being at home all the time now i only do what i want ha ha. I was very good yesterday and stuck to my food allowance. I walked on the spot around the house for ten minutes at a time three times don't laugh that's a lot for me. Then last night i went for a brisk 15 minute walk.. Hope it helps. I used to be so fit. I must say my new boob must weigh a lot as its solid.....
Last night i woke in night with pains around heart area. Just below ribs. It worried me like hell i don't want to die... it was like pins and needles without the pins. It lasted for about hour and half and i woke this morning with nothing. But i am going to put a post on here and take it easier today... My breathing wasnt effected and nothing else so prob just over done it. I panicked as my heart side and all this about this treatment affecting heart etc...
We have rosemary Conley here to but it didn't appeal to me i don't know why and i didnt know anyone that's done it.
I am glad your plan session went OK. I know what you mean about the travelling. My local hospital is about three miles but i am being treated at one twenty miles away... its tiring and expensive travelling. I have got a lady fighting my case at the moment to see if i can have herceptin at home.. Noone ever has from our hospital and the consultant is new to the idea but she has put my case to the clinical manager so watch this space......................
Sept 13th eh its not a fri is it. My 2nd dose is Sept 2nd. At least you have a date and you can provisionally mark each week on the calendar.
The little book seems helpful i was given one at hospital after treatment and you record appts comments etc in there like yor bible ha ha.
Anyway got carried away on here this morning i must go and wash my hair and get dressed. I am not usually this lazy honest.... in fact got a busy day clearing a bedroom out for decorating...
TAKE CARE
JULIEX
have a good day and keep in touch...

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Re: anyone starting herceptin 12th aug

Hiya Julie,
Glad to know your first week has gone well.Weight watchers eh? I really should go but can't raise the enthusiasm at the mo.Is there an excercise bit too? The nearest thing to me is a Rosemary Conley class so I may get to that in a few weeks as I am stuck at a plateau after losing (intentionally) 10 kilos.
Are you aiming for a particular weight loss target? I am trying to get my BMI within normal limits - it was way over the top before diagnosis and then I put on a stone just by being off work/sitting more than usual and eating chocs etc that visitors brought me.
I went to the planning session yesterday and negotiated a short break as I am really "travelled out"- worked out that since diagnosis we have done over 2,000 miles to hospitals and that isnt counting my local hospital where I had surgery.
My loading dose will be Sept 13th.The breast care specialist nurse was very nice , explained everything and also gave me a recently designed booklet about Herceptin and frequently asked questions which is great because I can now let other family and friends see it without me having to explain it badly!!
Wet ,grey and miserable here too at the moment but did have a sunny afernoon out on sunday at a local beauty spot.
Love for now,
Kay

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Re: anyone starting herceptin 12th aug

hi Kay
well its one week on and still feeling gt. so gt i went and joined weight watchers.... we can all dream eh. but i have put on about 2 stone since dx last Sept... two ops generally unwell chemo etc...
anyway back to my treatment. the nurses left me alone while it was being dripped into me. they came back near the end with next apt and said i had to stay for fours hours. Not once was anything checked or was i asked how i feel....... i thought you were there because they did regular checks but not on me........... what date is your first one i cant remember. good luck for it. take care a dull and wet evening here in bedford.x
Julie

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Re: anyone starting herceptin 12th aug

hi polly
no side effects at all,not even the runny nose that people seem to get.
maria
take care

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Re: anyone starting herceptin 12th aug

Hi Julie,
Glad it went ok for you. I have been watching for your 1st post-Herceptin post! I have a Hickman line in so not concerned about the veins so much. Veins getting much better though still 3 "tramlines" visible and obvious and a dark patch on the back of my hand.
Quite worried about the first dose as I am allergic to lots of things. Did the staff do your pulse, blood pressure etc during the 4 hours or just a visual observation? My best friend has lent me a chickflick to read to while away some of the time.
I have been for my pre- Herceptin echocardiogram at a different hospital today.
What are upto over the weekend....anything nice?
I am taking a friend to hospital for minor surgery, waiting and then bringing her home again tomorrow....talk about coals to Newcastle!!!
Have a good one,
Love Kay x

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Re: anyone starting herceptin 12th aug

Hi Everyone
I had my first herceptin on 12Th. I was worried the day before. In tears the morning of it but not actually sick. I kept thinking everyone says its a doddle compared to chemo. Well i was in hospital at 9.15 they kept trying to warm my hand to get a vein. They want me to wear a glove or put a heat pack on hand for my hours journey. That might help. We got there eventually and it didn't hurt. It was over quite quickly but i had to wait 4 hours before i could leave in case of side effects reactions etc. Its horrible waiting to be ill........ Anyway last half hour dragged. but again i got through it and no side effects. Its now Friday and still OK so hoping it doesn't get worse each dose and if it don't i will be ok. Its just the hospital thing i have to cope with. Mind you i felt i could have gone clubbing after my first chemo, little did i know further on i would be so sick i had to stop at no 4.
KAY well done for getting through your rads. and good luck for your herceptin.
POLLY. we are brave giving up chemo but we know when we had enough. I had four out of 6 doses. I was on fec. and as long as i had 4 i could have herceptin. The reason is it works best with 4 plus chemo sessions. Anyway take care all i have 17 to go now. Next one 2nd sept... keep in touch.all.
Julie

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Re: anyone starting herceptin 12th aug

Hi polly,

Compared to chemo, it's a breeze - although the searching for a vein is hurting more and more, but I think chemo etc ruined them. I have had sore through a few times after Herceptin, but nothing major - general tiredness, but that could also be attributed to me being a mother of small ones.

You do whatever is best for you.

goodluck,
Karen

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Re: anyone starting herceptin 12th aug

Hi Maria
Saw my onc today. He wasn't too happy with my decision to stop chemo, but respected my decision anyway. He is going to let me have Herceptin and I start on 22nd August. You say it is a doddle compared to chemo, have you had any side effects?
Polly

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Re: anyone starting herceptin 12th aug

Hi,

I've had 8 lots of Herceptin so far - it really is easy, it does take quite some time - 2 hours at the hospital every 3 weeks - so not too bad. It will be great to have a buddy through this.

K

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Re: anyone starting herceptin 12th aug

hi polly
i didnt complete my chemo either and was still allowed to start herceptin. so made no difference to me, hope u r the same.
maria
ps herceptin is a doddle compared to chemo

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Re: anyone starting herceptin 12th aug

Hi jal7777

I read your thread with interest as I too have decided not to continue with chemo. I see my oncologist on Thursday but I don't know whether he will still let me have Herceptin if I don't complete the chemo course. I wondered which chemo you were on and how many did you have before you stopped?

Polly x

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Re: anyone starting herceptin 12th aug

HI IM DUE TO START HERCEPTIN IN THE NEXT FEW WEEKS IM WORRIED ABOUT THE FIRST ONE AND DONT KNOW WHAT TO EXPECT ITS GOOD TO HEAR THAT ITS NOT AS BAD AS THE CHEMO AS I FOUND THAT AWFUL DIDNT THINK I WOULD GET THROUGH IT AT TIMES,IM ON TAMOXIFEN AND THAT SEEMS TO GIVE ME HOT FLUSHES THINK THAT IS A COMMON SIDE AFFECT
SANDRA

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Re: anyone starting herceptin 12th aug

Hi Julie,
How's things ? I have finished my radiotherapy today .....yippee!!!!!
Am looking forward to a few days at the seaside to chill out a bit and a well deserved large chocolate pudding of some sort- one that requires planning permission and scaffolding!
Won't be on line again before you go for your "first date" so good luck and I will be thinking about you on the 12th ....let us know how you get on,
love Kay.

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Re: anyone starting herceptin 12th aug

I have an appointment with my onc on 20th August - had my last radiotherapy today and was laying there waiting for the buzzing when told machine had broken down - so grand finale - had to go on another one.
Anyone starting Herceptin in August who goes to Leicester Royal Infirmary. Rather dreading going back to chemo suite (love the way its called suite, as though it was a posh hotel!) . I have got quite phobic about needles and veins so not really looking forward to it, but hey if it makes me well, I can't complain, too much anyway. Anyway hope all goes well for us.

Judy x

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Re: anyone starting herceptin 12th aug

Hi Jal7777 & all

I'm due to start Herceptin end August. Don't have a date yet. I'll be having it alongside Taxotere for the first four months and then indefinitely after that. I've got bone mets recently diagnosed after 5 months since primary dx. Would be good to share experiences on this thread.

Alison

Anthi
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Re: anyone starting herceptin 12th aug

Hello Jal

I finished my year of Herceptin last May. Compared to chemo it really is very easy. The first one is a long day as they keep you for several hours afterwards in case you have a bad reaction so take a good book. I was there for 8 hours altogether the day of the first Herceptin but had no bad reaction - just stiffness and slightly painful arm and leg muscles but I was fine the day after.

After that I had very few problems. The the only side effect I had was a runny nose which appeared each time about a week after the Herceptin infusion. My nose got blocked up and I found that breathing steam was a great help.

Good luck.
Anthi x

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Re: anyone starting herceptin 12th aug

Hi Julie,
Sorry haven't replied sooner. I am trying to wean myself off the site a little bit as I have got into pattern and was on every day and I realised that it is about time I depended on it a bit less.
I am not private. Apparently that is how the system works at the Christie. It is in Manchester. The nurse who seems to be the main specialist/organiser rang me at home to say she was off for two weeks and would see me on the 18th as soon as she got back.
From what I understand there is no choice about which day you go for the first 2 goes....she said it would be a Saturday- all day for the first one and a half day for the second.
The people who come to your house are a mobile team who are already trained chemo nurses and rather a lot of them were nurses at the Christie originally- for this area, although I understand there are quite a few branches around the North West now. Will let you know more when I find out.
The only other thing she told me was that I would have an ultra sound scan at Wythenshawe hospital before the drug regime begins and will have one every 12 weeks after that to monitor my heart.
I was asked in outpatients some time ago whether I would take part in a study about cardiac function and Herceptin to which I agreed. It is only information gathering from my notes - no extra tests/procedures etc so I am not sure whether every 12 weeks is the normal order of things or to do with that?
I had a grade 2 , 3.5cm lump removed and the surgeon took about a10cm mass of tissue approx 1/4 of my breast. I was given the choice of this plus definately radiotherapy and possibly chemo or mastectomy -on the day of the biopsy. They said that there was only a 2 % difference in recoccurence at 5 years.
I did end up having the chemo- Epi + CMF. I had my surgery on 1st Nov and started chemo 15th Dec 2007 & finished on Fri 13th June. This they decided was because I was pre- menopausal.......though I think the starting the Tamoxifen put paid to that!!!! That was started on the one stop clinic day and suspended whilst on chemo. I have the new packet ready for next week after I finish rads. deep joy.
We had a pretty damp Sunday here in the High Peak too. Not that I care about that any more I am just glad to be alive to feel it!
How about you?
I have just started a "positive living" course at a centre about 10 miles away. It is one day a week. (for 12 weeks) which is mainly about relaxation, helping to get /keep your immune system well, etc. I am also having Reiki there for an hour each time. I don't believe or disbelieve in it as I don't really understand it but I keep an open mind and it certainly was nice to relax etc which I am not usually good at. Far too busy and attacking life at full pelt.
Thanks Mary and justme for your comments too,
Cheers for now,
Kay

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Re: anyone starting herceptin 12th aug

I'm having No. 8 this coming Thursday, but I am still getting them at the hospital over one and a half hours. What with the waiting time beforehand, flush throughs and the time it takes to administer I am usually there for 4 hours or more.

Wish I could get it at home...or at least over 30 mins!

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Re: anyone starting herceptin 12th aug

Thank you Mary for your kind reply. i must say you have made me feel a lot better already.
julie x

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Re: anyone starting herceptin 12th aug

Hi
I am having number 7 next week and want to reassure you.I was kept for 6 hours on first one to check for a reaction,number 2 was an hour and a half,number 3 was an hour and now having them over 30 minutes,same dose but given quicker.I have mine on a Wednesday,and my only reaction is a bit of a runny nose over the weekend.So relax its not anywhere as bad as past experiences.
Good luck

Mary
xx

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Re: anyone starting herceptin 12th aug

Hi you are so lucky having it at home.
How did you fix that are you private. Where is the Christie hospital. Yes lets keep in touch. I am not having a meeting straight into it on 12th at 9.30. I have been told it takes one and half hours to give it but i have to stay in unit till around 4,30 in case of any reactions. Apparently the first one is a loading dose. After that its just one and half hour every three weeks. I chose not to have it near weekend in case of reaction i wasn't going to be kept in hospital all weekend waiting for a doc on monday morning ha ha. Good luck and keep in touch.
What was your dx and treatment plan if you don't mind sharing.
Have a gt rest of weekend wet here in bedford.
luv juliexxxx

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Re: anyone starting herceptin 12th aug

Hi jal7777,
I am going for my "Herceptin appointment " on 18th August at the Christie hospital. I recieved my appointment in the post this morning. It just says planning/chance to ask questions etc so I won't be actually starting the drug on that day.
I finish rads 8/8/08.
When I spoke to them recently they mentioned that the first 2 doses will be given on a saturday at the christie and then if things go well the rest will be given at home.
I would be happy to share the journey...a year does sound a long time doesn't it?
love Kay x

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anyone starting herceptin 12th aug

hi just wondering if anyone anywhere is starting herceptin on or around 12th august. i thought as its a year long treatment it might be nice to have someone to share moans groans and happy times with. i am dreading it. infact scared stiff. is this normal. i gave up chemo cos i couldnt cope i hope this is better. have a good weekend all.