Bl**dy computers. just wrote you all a lovely message and it timed out or something and i lost it (went and washed daughters hair and got her out of bath in middle). Its SOOOOOOOOOOO frustrating.
Going to grump in front of TV now. What a waste of energy…
love to all
Jacquie
ps in a nutshell it said: great about party, dawn. Hope you’re sleeping now. well done cathy for getting what you want.A bit of discussion about ports. Only spent £2 today!! tried on a zillion glam outfits but too fat!! couldn’t find anything, but had fun looking. Diet starts sometime 2008…
Hi Everyone
I had a ct scan yesterday on my liver to see what is happening, and got my onc appointment tomorrow at 4.15. He bought it forward a week, as I want to start Herceptin this side of christmas. So hopefully tomorrow we will find out how successful my chemo has been, what happens now, when start herceptin and whether they are willing to look at liver ops!! Am bricking it I have to say, about seeing him, and what the results etc are. But hey ho, must be done.
Kay will also be asking him about liver resection and ablation now, as know he has results - interesting to see what he says I reckon, but am scared he will be a straight NO, and for what reasons. But we will get second opinion.
Cathy, would love it if you could get some info for me on disneyland in Florida, where best place to stay, we were thinking inside resort but see what they say. Am glad all went well with your meeting with your onc and sounds like you are rattling like me, although I have just finished antibiotics as my blood count down and getting infection, but all nearly cleared up now. Amazing how long takes too get over a cough/cold at the moment, as immune system trashed.
Jacquie - know the feeling about typing a really nice long chatty message and then losing it. Drives me made when it happens, normally cos I hit the stupid mouse thing on my laptop and then it goes off somewhere. Air goes blue.
Hope everyone else is doing well and having a good week so far. Will let you know what happens tomorrow after my appointment. Keep your fingers and things crossed for me.
Take care and lots of love
Dawn
xx
Anyway, hope all you ladies are dong ok though. Can’t wait to organise a meet in the new year still, if you all up for it.
Take care and speak soon
Love
Dawn
x
Hi all
Really hope your appointment went ok today, Dawn, and I’m keen to know what your onc feels about the possibility of surgery. I’m still going round with a big smile - got a date now of 30th January. I’m sure at some point the seriousness of the op will hit me but not just yet! I wasn’t sure my onc was entirely in support but actually he appeared delighted last Friday - and was talking about taking the port-a-cath out after the liver surgery because I wouldn’t be needing it for the “foreseeable future”. That was really encouraging. Do really hope that it might be an option for you as well.
Glad you’re planning a trip as well Dawn - we went to Disneyland in Florida about 12 years ago and it was great. I’m hoping we can get away for a holiday of some sort after the surgery - quite fancy a cruise.
Good news, Cathy, about the Avastin - it is meant to be the new wonder drug! And I’ve found my port really great. My veins were awful 5 years ago when I had the first chemo - it’s been much less stressful this time despite the number of sessions. The port was just a little uncomfortable the first day or so but that was about it really.
Not sure how you can have gone shopping Jacquie and only spent £2!! Glad you enjoyed it though. Will have to join you on that diet I think - can’t believe how much weight I’m putting on. I also feel so unfit - intending to start walking again as soon as I can even if it is only a few miles very very slowly.
Hope everyone else is doing ok.
Kay xx
Hello you lovelies,
Waiting for Dawn to tell us how you got on today…really hope it’s good news all round and you feel you’ve had a really good discussion and know everything you want to. You’re probably whacked from the intensity of it all, but hope you can fill us in soon.
Kay - that all sounds very definite and very soon!! Yikes!! It is a big thing isn’t it - it’s brilliant how quickly it’s all been arranged. I imagined it would take them months to get you a date. And having your port out must feel like a really positive step too. How long will it take to recover? I seem to remember reading about staying in hosp 6 days, but that may be out-of-date now. Will you need someone to look after you when you get home?
Hi to everyone else and hope you’re doing fine and not overwhelmed with the whole Christmas thing (unless you want to be).
Yes, hard to believe I only spent £2 - I think in a way I was scared that once I started to spend I’d never stop! And I was concentrating on an outfit for a particular occasion and didn’t find it. However, I got dragged into Monsoon yesterday by a friend and happened to find the most foxy pair of evening shoes ever. She gave me some money towards them for my birthday (in Jan) so I HAD to buy them! Now I’m happy to wear the old outfit I’ve worn to everything I’ve been to in the past two years (with an elasticated waist, which will help!!) as I have lovely new shoes and feel like someone off strictly come dancing!
Having a bit of a mad week - West end on monday, friend down from Scotland yesterday and stayed overnight, and I’ve promised my daughter (15) I’ll take her to buy boots and a coat tomorrow as she’s on study leave and it’s the only chance we’ve had this term…(she’s getting really cold!) Gonna be totally wrecked by the end of the week.
So, what’s this about meeting up? Can those of us a bit further afield gatecrash, or is it just for you girls on the east side of the M25? we won’t be offended! But wouldn’t it be great if we could all get together? Keep us posted Dawn, you seem to be the one with the game-plan.
Love to you all
Jacquie
Hi All
Well thought would fill you in on my day. I had my appointment with the onc today and got the results. Apparently I have responded well to my chemo of 3 x FEC and 3 x Taxotere and the tumours in my liver have shrunk considerably, but obviously not disappeared as never said that. Didn’t give any percentages or sizes etc. So I spose it is good news that they are shrinking well, although am bit disappointed not disappeared, which I know I shouldn’t expect!!!
As for surgery, which we did ask about as soon as said that had shrunk and this is what he reckons - “no-one with bc, would get liver surgery, as it can spread elsewhere apart from liver, and also even though I have 2 tumours showing on scan, could be more that are too small to be picked up”. Apparently only liver cancer from bowel cancer is operable". I mentioned you kay, and he seemed shock, and told him you lived in Guildford and had a specialist that was operating in january. But he is happy for me to get a second opinion on that … which we are looking into, need to try and find a liver specialist/surgeon in London, Essex area. So not as good as your news Kay, but we shall see.
They are putting in for me to have urgent heart scan, so either end of this week or next week, and then to start herceptin. He said normally waits 4-6 weeks after chemo before starting, so pointed out 18th Dec is 4 weeks, so would be good.
Anyway, rambling now. So think it is good news as shrinkage and responded to chemo, so now hope that Herceptin works well for me and controls my liver etc.
Not really sure how I am feeling though have to say, as know it is good news that chemo worked, but as said, maybe my expectations were too high, after worrying that there would be no change. Also the bit about the op was disappointing, but we shall see what a surgeon says.
Love to meet up with you all when we could, think it would help me, and maybe you all too, to meet and talk to people in the same boat. Not sure where we are all from, but think all around the M25 maybe, but we can meet anywhere, even London!!! Have to sort out in the new year when we are all feeling good and hopefully before Kay has her op.
I hope that you are all ok, and well done on your spending in Monsoon Jacquie, that is where I bought my daughters birthday clothes from and more!!! LOL. sounds like you are having a fun week though.
Kay hope you are good today and everyone else too.
Me and my 2 muppets went out with all my friends today, first time me and jack been out on a Wednesday since 7 Nov, just before admitted to hospital and he had a great time, especially now he is walking. So was good to get back to normal.
Anyway, think I have definitely rambled enough now, hope you are all still awake.
Take care and lots of love
Dawn
x
Thanks for listening
Love
Dawn
x
Really pleased Dawn to hear your tumours have shrunk considerably - that’s really good news. My liver surgeon (and oncologist) would certainly dispute what he is saying about only secondaries from bowel cancer being operable - and the team in Guildford have a very good reputation in the SE. It’s not being offered to me as a “cure” but just with the chance (again no guarantee) of being NED for much longer - I almost certainly have other areas of spread too that are too small to pick up at the moment but then they may remain that way for years. They are doing more and more liver resections in America I think, for secondary BC, so I think it’s just a matter of this country catching up really! Interestingly enough, the surgeon I’m seeing, spent 18m in the States I think - possibly where he got the expertise/knowledge.Anyway… hopefully Dawn, you can get that 2nd opinion and see whether it is an option for you as well (or ablation).
I’m (still!) on a high - last chemo tomorrow and a letter today confirming operation date etc. Been really busy at work as well discussing cover for me etc. I just feel incredibly lucky at the moment to be given this chance. I’ll be in hospital for 7 - 10 days evidently. The surgeon sometimes does it as key hole surgery (and then you’re out I think in 6 days) but he can’t do that with me because of the proximity of the vein etc. Then he said about 4 weeks off to recover. So hopefully by Easter I’ll be feeling much better - if still overweight and unfit!!
It would be really good to meet up in the New Year - count me in! My only problem might be fitting it around my work commitments if it was during the week - or would the weekend be easier anyway for those of you with children?
Lots of love
(A still smiling) Kay xx
Hi Girls,
Dawn - great news about the shrinkage - definitely the way to go! - but disappointing about his reaction to the surgery. And that was the onc was it, not the registrar? Can’t believe he hadn’t heard of it! Good thing you were armed with the facts and had Kay’s experience to tell. How do you go about finding someone for a second opinion - will he look into it or do you have to find someone yourself? Where would you start I wonder?
I guess you must feel a bit deflated as it’s not moving forward at the moment, but at least you get to start your herceptin like you wanted. Has anyone mentioned staying in hosp overnight? I think I had to for the first dose in case of a bad reaction.
It would be brilliant to meet up in the New Year. London might be simplest for us all to get to.
Kay - great you have a letter for surgery appointment - can’t believe it’s happening so quickly. Good luck for tomorrow - bet you can’t believe it’s the last one. Well done you for making it through, it’s a huge achievement. Have a huge chocolate cake or something to celebrate (when you feel up to it).
I’ve been talking to occupational health about going back to work - looks like being second week of Jan I start on small hours and gradually work up. At the moment I’m just enjoying being chemo-free and almost out of the danger zone for picking up infection. Working on building up my stamina (for shopping!).Got my first Herceptin-only session on monday.
How are you Jen, Jill, Cathy and Allie, and anyone else out there?
Take care everyone
Jacquie xx
Hi All
Still smiling Kay, what does NED mean - sorry to be thick … probably something basic. Good luck tomorrow with your last chemo too … go celebrate when done.
Well have had a reply from the Nuffield in Brentwood, about a liver specialist called Dr Osman with his secretarys number. £150 for 1st consultation, but have private so that would be ok. Had couple of other posts on the DM1968 thread about someone in London who does RFA but forgot his name (need to write it down), so will follow that one up as well. Did email Royal Marsden so waiting to see what they say, but might ring tomorrow if get a peaceful 20 mins from the two muppets. Am still looking at other private hospitals in the area to email and find out who they have. Not sure how you know which to go with, but will get there. I know that the ops are not a cure, as you said Kay, we probably have rogue cells flying around but too small to pick up on scans. But if helps my life expectancy bring it on.
Glad you are still smiling and very happy about things right now Kay, and I am so pleased for you. Sounds like you have it all sorted with dates etc, and it is now just waiting for all systems go. Have to let us know hospital etc, so can send card!!!
Jacquie, we saw my oncologist yesterday, as I wrote a letter to him and stated in that, that I wanted to see him and not the registrar. He was actually very nice and very knowledgeable. Not sure why he is so adamant about surgery or RFA, but he didn’t have prob with us getting another opinion. I know that when I have my first herceptin it will be an overnight stay, unless I can get an 8.30am appointment, then can sit there all day and then go home. But more likely have to stay. Good luck with your first Herceptin only treatment on Monday, hope it goes well for you.
Meeting up would probably be easier for all in London. Doesn’t really matter what day for me, as hubby chooses days he works, and does work one day of the weekend 3 out of 4, so can do midweek. So need to sort out who wants to meet, and go from there and then sort out time and day, as I will need to make sure OH can be around to have muppets!!! LOL … I will get a DAY PASS!
Got the 18 Dec for my heart scan, but they have put it down as urgent, and so will get first cancellation going. Apparently onc is getting everything sorted for herceptin to start, so need scan to be done as soon as.
Well hope everyone else is good, Jen, Jill, Cathy and Allie and anyone else hope you are all OK and doing well this week. Gone quiet at the mo, but hopefully it is just the run up to christmas that is keeping you busy.
Well got a glass of wine … second time since 26 July, but onc said to eat and drink what I like so here goes (obviously in moderation). Saving the laurent perrier pink for christmas day I think. Got my tin of roses out too - gorging out I am.
Take care all and sending lots of love
Dawn
xxx
Hi All
just a really quick message at moment as I am sitting with tiny glass of red wine and my husband at moment.
Dawn glad your news was encouraging, and keep chasing that opinion, I think these oncs are very stuck in their ways sometimes and that is the answer he has learnt - so he is sticking to it. We need to find people who are willing to be creative. My hiusband told me he once read a study that even said this//
Count me in for a london meeting.
take care all
Cathy
Sounds like i’m the only one without a glass of wine! Made me feel so sick on chemo, even half a glass, that I haven’t really bothered but really missed it.
Dawn, just to say I’ve remembered that my onc let me start herceptin a week or two before i had my MUGA (heart) scan, cos it had to fit in with my chemo dates. Yours might let you do the same if it’s getting close to the date.
Nice to hear from you cathy.
Have a good weekend everyone, and hope kay’s not feeling too yuk.
love Jacquie
Hi all
18th and last chemo today! Hurray! Can’t quite believe I’ve got to this point and that everything seems to be falling into place so well. My red blood count amazed the onc today - it’s gone up again! he can only think it was something to do with the infection I had etc - so no need for a blood transfusion (though still quite anaemic) and, indeed, no more medical appointments until the New Year (just the optician a couple of times to check out my eyes). Am really going to try and relax, enjoy life (and Christmas!) and build up my stamina ready for the op. Not quite up to celebrating properly tonight - too whacked - but soon. Michael (my middle one) is back from his travels round NZ, Fiji and Hong Kong on Monday, so perhaps we’ll all go out for a big family celebratory meal next week.
Saw your other thread Dawn - you’re getting quite a list of names! Wondered whether ringing/emailing my chap’s secretary might also help to see whether they know of anyone more local to you. Think I gave you the link to his website, otherwise just google Nariman Karanjia. My guess is that he probably would know of others offering this surgery for bc. Keeping my fingers crossed for you.
NED stands for “no evidence of disease” - it took me a while to work it out as well (might have asked someone myself). It’s the term my onc (and lots of others seem to use) to describe what we’re hoping for (rather than cure or remission etc etc).
Like your comment about needing people to be creative, Cathy. I occasionally feel a bit panicky about the fact that I’m being offered something I know a lot of other professionals won’t offer and as with Dawn’s onc, don’t even seem to see as a viable option. I then have to talk myself through it again and tell myself that I am incredibly lucky to be with this team who have a very good reputation, and with an experienced liver surgeon who has offered this operation for many years to women with bc and has these encouraging results. And the surgeon also is someone I feel I can trust. I really really hope that my experience can also help all you ladies who might also benefit from liver resection and want to go down that road - and who are going to have to argue the case much more than I have had to. I’d be so delighted if any of you also get that option of surgery - like sharing my good fortune.
Great news about you going back to work, Jacquie. It’s another step towards getting back to normal isn’t it? Or rather something that is the new changed “normal” if that makes sense. Perhaps you should be the one who should suggest a day etc for meeting up as you’ll probably feel shattered the days you’re first in at work. Unless we can make it before you’re back at work??? Really looking forward to meeting you all then - it will be so good to put faces to names and to have a proper two-way conversation, rather than this time-lag stuff.
Think the steroids might be kicking in - feel quite emotional this evening. Or the adrenaline effect. Hope all of you are doing well - are you ok, Allie? Guess you might be busy at the Christmas fairs. Must be a particularly hectic time of year for you.
A wish for “good news for everybody sometime soon”…
Lots of love
Kay
Hi kay Jacquie, Dawn and everyone else
Kay -Still trying to make my onc talk to me about avastin on a yes we can do it or no we cant because XYZ, he hasn’t come back to me yet, and I will have to chase him until I get a proper answer, calling him again on monday…its frustrating that we have to do this but I am sure its the right thing to do, to get a proper answer why its a good idea or not. kay - you are lucky to be with this team who are looking at all options, and are keeping up with us practices… if I dont get full answer on this I think i may change doctors - can you let me know who you are with?
Dawn - I sent an e mail to brother, he said the The best place to stay would be the Swan and Dolphin Hotel on the Disney Property, that the rates would be at the most reasonable they have been for years, he said definitely fly into orlando if you want to concentrate on disneyworld…he also mentioned which I think I knew that disney is very very helpful on any mobility or special needs (Lots of parents who have children with autism have said this!!) as they cut out all waiting, so do declare yourself if you want to when you book as it can help alot,
Feeling really good as seem to be totally through chemo fog for number one and now heading for number 2, having a port put in on thursday which i really dont want to do, but i know is the right thing, given i am now into this for hopefully the long term…then straight into chemo the next day.
I am going into work tomorrow, trying to keep my job going, not sure how long i can do that, but it is suprisingly easy to feel ‘normal’ or a new sort of normal at work, as there is so much to do…
love to all
Cathy
Hi all,
Yes I am still alive & well, been very, very busy with the business and with galavanting off to Manchester to see Kaiser Chiefs etc!
Kay-What marvellous news last chemo & go ahead with the op, thats great! Dawn, good luck with finding a surgeon. Jacksy & Cathy- I find working very therapeutic it keeps my mind off dwelling over things, which is good.
Can us up from the frozen North join in with the meeting up? My OH is down in the big smoke during the week, but a weekend day would be ok too, as I could go stay with him. I used to live in central London so know it well, if you want a central place to meet there.
Got my last Epi on Wednesday and will have picc line removed after 5FU infusion is finished the following Weds. I sprung a leak last week and had to have my picc line shortened. I’m amazed that it has lasted this long without infection etc.
Right time for dinner,
Take care all,
Allie
Hi all
I’m recovering slowly from the last chemo - sleeping a lot at the moment but then I did have some bad nights prior to seeing the surgeon etc when I was feeling so stressed. Or perhaps I’m just trying to avoid writing the Christmas cards!
I think I’m really lucky in the team I have here in Guildford for lots of reasons. The onc I see, Cathy, is Anthony Neal - I see him privately at the Mount Alvernia Hospital in Guildford but he also works for the NHS from the Royal Surrey Hospital. He’s now got several patients on Avastin I gather - privately rather than NHS but I think you said before you could go privately (and that you were SW London?? - still working on my chart!!). Can’t understand really why your onc can’t give you a decision one way or another.
Sounds as if you’ve been really busy Allie - good to hear you’re ok and doing so much despite the chemo. What are the plans for you “treatment wise” once you’ve finished chemo?
It was Dawn’s idea (I think) to meet up but I would have thought the more the merrier - just a matter of finding a date and location to suit all.
Hope everyone else is ok.
Kay x
Hi All,
Nothing much to report, but I’m trying to log on every day if poss, then I can reply while all your info is on the same page!..smart idea!
Good to hear from you Cathy and Allie. Of course you can join us - it sounds a bit of a logistical nightmare getting us all free on the same day, but i’m sure it can be done. (Thanks Kay, but I don’t know what days I’ll be working yet - until I go for Herceptin tomorrow and find out the timing. Mondays are usually a work day for me and I have to have the Herceptin on a monday so may have to switch days completely).
Kay, enjoy having your son home tomorrow, he must have been gone ages.
Dawn, you must be becoming an expert on liver surgeons! I’m envious of your Disneyland plans - makes me think we should have a really good holiday next year too - this summer was totally screwed up. That sounds good if you can avoid the queues just by telling them beforehand - what a great help, especially with little ones.
Cathy, keep bugging that onc until you get satisfactory answers. We have to become much more pushy than we were before don’t we? but nobody else will fight your corner for you.
Good luck for thursday - it’s not too daunting. My sedation had worn off by the time I got sent down, so chatted away to the surgeon throughout. It’s been brilliant to avoid all those needles in veins, and much cleaner and less risk of infection than a picc line. Two things I wasn’t warned of - injections for scans still have to go into a vein in your hand, and I wasn’t prepared for the scar (and port itself) to show (i wear quite a lot of open necks), which made me feel a bit sad. My boob scar was never going to be seen by anyone, but now when i put on certain of my tops i could see a scar. It might help to know ahead.
Cathy, what is your job - have you said already?
Allie - hope you’re not overdoing it with work and play. The Kaiser chiefs eh? you rock-chick! Good luck for wed and having picc line removed - that should feel good!
Kay, I’m sure going back to work will be a help, but it is a bit daunting. There’s lots of things i just hadn’t thought of, like the amount of times I crawl on the floor, jump in the air, and tip my head upside-down, not to mention toddlers who may pull my hair - suddenly wearing a wig seems a lot more precarious! They’re not things I generally do in my everyday life, but in a job that’s all about assessing children’s ability to move and encouraging them to move in particular ways…well.
Also, I just don’t know how I’ll react, in particular to parents I know well, or staff at the schools I visit. Not v professional to start blubbing if they’re kind to me is it?
Plenty to worry about, quite apart from how I’m going to concentrate for hours on end, come out with the right words for things (still got chemo brain), and generally remember anything i used to know 10 months ago!
At least i have lovely colleagues who will let me go at my own pace as much as is possible.
Got to go - daughter keeps shouting me to read to her in the bath and i’ve said ‘in a minute’ about four times!
Take care eeveryone
Jacquie
Hi All
Well had just type a marathon of a message to you all and lost it … am not a happy bunny, so will start again … watch this space.
Dawn
x
Hi Everyone
Kay, congratulations on finishing your last chemo today, when you said 18th, does that mean you had 18 chemo sessions, if you did, wow, that is amazing, I only had 6 and that was bad enough. Hope you are doing OK now though and got over the tiredness, i am a little late catching up with this. Had busy weekend, another 4th birthday party!!!
Bet you are well excited on your sons imminent arrival tomorrow, and hope you are well enough to go out and celebrate your end of chemo and his arrival home.
I have got quite a few names, email Royal Marsden (not heard back yet), Nuffield at Brentwood, was given a name, and had a few from others on the forums. I have just emailed your Professor using the email address on website. I googled his name and from reading some of them, I felt instantly that he could probably be the one that I would like to use. So hopefully will come back with some positive news. We are willing to travel to Guildford, although as he works for a Nuffield hospital there too, we might be able to sort something out so that I can stay local, but it really doesn’t matter if we can’t. Will keep you posted.
I think you are very lucky to have found such a great surgeon and shouldn’t panic about being offered the treatment, as he wouldn’t do it, if it wasn’t worth it. Just think oncs should be more open to surgery, if it helps me to survive longer, then should be an option.
Cathy, thanks for the heads up on disneyland. We shall have a look at it, and money is not really a problem as we have savings and are looking to splash out and really enjoy and treat ourselves and the children, as we had to cancel our holidays this year and so have not had a holiday, apart from March going to eurodisney. So we well deserve something special. And I will definitely mention this to them, as have heard that people who went to say Chessington and Alton Towers etc, informed the parks of their illness and got to queue jump, so well worth letting them know.
Glad you are feeling good after chemo no. 1 and hopefully you will be the same after chemo no.2. Good luck with your port too, although i have no idea about it, as never needed it yet. I hope you manage to get an ansa out of your onc too about avastin. Keeping everything crossed for you.
Allie, welcome back, glad to hear that you are OK and have been enjoying a busy time of it. Sounds like you are having fun!!! Course you frozen northerners can come and join the meeting. Would be good to put faces to names, so we know each other properly. Not sure when or where, although probably London, but will need to try to sort out a date in January. I can do weekday or weekend, as my OH chooses his days off, as he has to work weekends sometimes. Good luck with your last Epi on Wednesday too and hope it goes well for you with no side effects.
Jacquie, good luck with your Herceptin tomorrow (I think) and let me know how it goes, cos I should be starting soon but not sure when yet. Think you should definitely book a special holiday, as like us, your holidays cancelled this year, and think we all deserve to have something good to look forward too. How old is your daughter, sure you have told me before, but brain dead. Reading to her in the bath, we do it at bedtime, but just had a major fight tonight with daughter (how can we have a big fight with a 4 year old), but believe me she was being a right madam and even hit me on the cheek!!! Silence now though, so gone to sleep.
Anyway, hope all you ladies are well and sorry anyone I haven’t mentioned. You probably wonder how I have kept up with the last few days, i copied all the text into word and got it side by side with this, so can respond without being too thick!!! Jen, hope you are OK too.
Take care all and lots of love
Dawn
xx
PS. Said it was a marathon post!!!
Have now had 4 of my weekly Paclitaxel (5th tomorrow) and not feeling too bad. hair coming out in handfulls. I’m not used to this as used cold cap first time around and although it thinned it didn’t look too bad. Hoping to keep it until after xmas but not so sure. I saw my oncologist last week and asked her about Anvastin but she said that there were no national trials and that even to get it privately isn’t easy. Of those of you who are having it who is in a trial and who is getting it privately? She said she wasn’t overly concerned that I couldn’t have it and I want to believe her but it should be easier for us to get everything we need.
My veins are holding up at the moment but she said if needed I would have to have a hickman line. They normally use a Picc line but have been having problems with them so have reverted back to the Hickman line. Hopefully my veins will last.
Dawn great news about your liver seconderies shrinking. I’m having repeat scan in new year to see if treatment working. My liver enzymes are reducing but Onc said it is a bit early to be due to my chemo so hopefully my liver has decided to get rid of the buggers itself! Good luck with your herceptin. I’m not Her 2 positive so it’s no good for me. Shame that the Onc hadn’t heard about liver resection for BC. They don’t all seem to be on the ball with what’s out there.
Would be great to meet up. I know I got a lot out of the healthy living day and secondary breast cancer day talking to like minded women. Where is everyone from? I am from Darlington co. Durham.
Jacky – how far are into your treatment now… think you are having the same as me although could have got it completely wrong. I find it difficult to remember everyone. Think it is something to do with the chemo or just could be alziemers setting in! Can’t even spell properly now. You sound as though you are having a busy time socialising. Everything comes all at once at this time of year.
Kay – it’s great that you have a date for your surgery. It’s amazing what they can do now a days. Great to hear you have finished chemo. Which one did you have? Were you having it weekly. Pleased you don’t need a blood transfusion. Cashew nuts and humous good for iron and drinking fresh orange juice at same time helps increase absorption. Your son sounds as though he is having a great time.
Cathy – We’ve been to Disney land 4 times over the years and it’s great. Something for everyone. The first time we went wasn’t sure I was going to like it but myself and hubby enjoyed it more than the kids. Have you got insurance? If you have can you let me know the details please as I have tried to get cover before and it has been ridiculous prices. Have a friend who went with leg in a pot and got to front of queue so well worth letting them know your circumstances.
Really looking forward to getting the profiles back on line so I can get up to speed with everyone’s details. Feel as though I can’t even remember my own details some days. I’ve also decide to write mine in word then copy it here. less chance of loosing it all
Hello to everyone who I havn’t mentioned.
Well better go now as was supposed to be looking for a xmas present on line.
Take care everyone.
Love Jill xx
Hi Jill and everyone
Well finally got an answer on Avastin and the answer is no…apparently I have the FDA to thank for this as the FDA avisory have just narrowly rejected avastin as a treatment for advanced breast cancer.
My understanding on this is there are national trials in the UK - and that the drug is licensed here for taxol plus avastin as a first line treatment…my onc was considering adding to taxotere.
The US believe that the data apparently simply isnt good enough to justify the addtiional side effects…have looked it up on the internet just now and unfortunately I can see his line of thinking makes sense. So I think what I have to do now is consider whether I go for a review of my case with someone else now - really as a general review Thinking about Mount Alvernia as I live near Richmond.
Jill its Dawn thats off to Disney - I have a little local knowledge as my brother is from there! But taking you up on your question - would love to hear about insurance issues as I would like to go somewhere…
well best to all , take care
Cathy
Oh Dawn, that’s so frustrating when that happens! I don’t know where the messages disappear to…
My youngest is 9, and perfectly capable of reading a book to herself, (and loves reading) but does like a bit of mummy time especially since I’ve been ill. Hope yours is behaving tonight!
This is the first time i’ve had herceptin on its own (not with chemo). Got there at 9.30, got out at 2pm. Only takes 1 and a half hours plus flushes, but no-one had ordered it from pharmacy. In future I should be in and out in 2 hours. I felt a wee bit nauseous yesterday evening, and more tired than usual today, but have been doing a bit too much and no early nights! When you’ve got teenagers they always need picking up from somewhere in the evenings…(OH works in eves). Still waiting to discover what, if any, side effects are from Herceptin.Time will tell.
Jill, I was having Taxol and Herceptin. The taxol was weekly some of the time, then three-weekly again at the end. My hair grew back a bit when on weekly dose but came out again on the bigger dose. I finished 3 weeks ago and now having just Herceptin , joined by Tamoxifen in January. So yes, we were on similar regime - see, your brain’s better than you thought!
Cathy, what’s the FDA? What a shame about the Avastin. How do you feel about it now?
Take care one and all. Off to watch Spooks.
Love Jacquie