Kay,
Just wanted to say i’m thinking of you today and hope it’s good news.
Big hug
Jacquie xx
Hi everyone
What an emotional 2 days! Results yesterday and then chemo today (sorry, Jacquie - I had my record time today for Taxol and Avastin, being in and out in less than 5 hours, including blood tests etc. So it can be done in that time).
Thank you all for your thoughts yesterday as I got the scan results. The really good news is that the tumour has responded well to the last 2 cycles of chemo and has shrunk again - now about 3cm by 3cm by 2cm when it started off being about 5cm in 2 dimensions. The “not so good” news (why does there always have to be a down side) is that it doesn’t appear to have shrunk away from the portal vein so the report from the radiologist just says it remains in “very close proximity” to the portal vein. So the onc would commit himself to saying whether it might now be operable or not. Anyway have an appointment for next Thursday with the liver surgeon - I’ve been gven all the MRI films to take with me so the liver surgeon can inspect them and pronounce whether he feels he can operate or not. How I hate waiting!! Hubby and I pored over the films last night trying to make sense of them - we managed to identify the liver but not much more detail than that!! There’s obviously more skill to this interpretation than I had realised.
Hadn’t thought I had definitely made up my mind to have the liver resection but when told it still might not be operable, my reaction would indicate that I have!! And the oncologist also indicated he thought this was the best way forward for me - so much so that he was saying that we could carry on with the chemo for longer if the surgeon feels he needs more clearance around the tumour. He also was encouraging in that he felt there would be further shrinkage anyway with the last cycle of 3 chemos and for some time after we finished the chemo (hadn’t realised that he expected further shrinkage even when I’ve stopped the chemo). It would be really nice though if the surgeon does say he thinks there is enough clearance already. Will ask him though about the liver ablation and why he feels surgery is better.
So that is where I am at the moment - another week’s waiting!
Glad you’ve had good news Allie - I too will have finished chemo before Christmas (unless onc goes for more to get more clearance/shrinkage) and it is good to think I can enjoy a bit of family time without having treatment. It is hard, though, making any long term decisions when you really don’t know what the future holds at all - it’s trying to make a logical decision when you know you only have half the information. Like others have said though, life is to be lived and I think I’m just going to try and get on with it all as best I can (and not be hard on myself if I find I have made wrong decisions). I’ve kept on working (reduced hours etc) through my chemo and haven’t regretted that at all despite being really tired at times - I am very lucky though because I do genuinely love (most of) my job. But everyone needs to do what is best for them - I don’t have young children (even if I’m working with them!) so I can just come home and flake out on the couch.
Sorry Jen to hear that your appointment with the onc wasn’t what you were expecting (and getting geared up for). Hope the appointment on Monday brings you good news.
Anyway chemo kicking in and I need to go for a snooze (probably the antihistamines!). Hope everyone is doing ok - anyone got any really exciting plans for the weekend?
Take care - lots of hugs
Kay xx
Harry Potter DVD on the couch tonight with a Tesco shop arriving in the midle! then a circus skills workshop with my daughters tomorrow afternoon. Why do I agree to these things!! I’ll probably be in some pain from my bones (neulasta injections) and still a bit knocked out by the chemo, but otherwise a quiet weekend.
Hope you’ve all got something to look forward to.
Kay, glad to hear from you, and about the tumour shrinkage, and that they expect more improvement. That’s brilliant. It’s so flipping hard having to wait more tho’, isn’t it! It’ll be good to speak to the man himself though, and get a first-hand opinion - I will await further info with interest. Sounds like your Onc is pretty keen on the idea?
Love and hugs to you all
Jacquie xx
Hi All
Kay that is wonderful news about the shrinkage on your liver, and heres hoping you get some great news next week. You have cheered me up a bit today reading this. My chemo blues have set in again, as usual, so tired, grumpy, emotional and cranky and feeling very sorry for myself and for some reason scared!!! But at least my chemo is finished for now. But reading your thread that the op might be goable gives me hope.
I am just writing a letter to my onc, as I really want to start Herceptin on 18 December, cannot bear the thought of going for about 7 weeks with no treatment, as my brain will go into overdrive and have me worrying myself senseless.
Jacquie, not drinking alas, trying to help preserve my liver, although come christmas, when it will be 4 weeks from my last chemo, might have a glass of pink bubbly!!!
I hope everyone is doing well and looking forward to their weekend. I am probably not gonna be on that much this weekend as trying to rest and stay well for my daughters 4th birthday next week, and I get back ache sitting at my desk. Gonna buy laptop Monday I think …
Take care all and sending lots of love and hugs.
Dawn
x
Hi all,
Kay- good news your tumour has shrunk, fingers crossed for seeing the surgeon next week.
Dawn- I’m having a break over Xmas from treatment, and if I were you I wouldn’t want to start Herceptin the week before. What if you become sick after the treatment? I wouldn’t want to be hospital over Xmas… away from your kids, minimal staff on duty, overcooked turkey…Yuck! Relax and enjoy while you can.
We have finally made a decision to buy a new car. At the moment I have a small, white van but its horrible to drive, so we’ve ordered a new automatic Mini but won’t get it til after Xmas now:(
Off to Builth Wells tomorrow to do the Royal Welsh Winter Fair on Monday & Tuesday, have bought Santa hat to keep my ears warm!
Take care all,
Allie
Hi All,
Just wondering how you all are. I’m emerging from post-chemo slump and actually did a bit of Christmas shopping today - make-up, earrings, felt quite human again. It’s shocking how bad you can feel one day, and then relatively normal the next.
Hope you are all fine and doing things you enjoy. Hope you’ve all had a hug and a laugh at least once today…
love Jacquie x
Hi All
Jacquie like you am coming through my post-chemo slump as well, getting over the grumps, tears, scowls, shouting fits, you name, I have been doing it!!! But think am slowly getting back to norm now, although still got few aches and pains and very yukky mouth. Also got a runny nose and sore throat and am terrified that it is going to turn into something sinister again like the last one, and make me miss my daughters birthday. Took my temp yesterday and was normal, so that was good, and think should keep an eye on it, but scared.
I did a little crimbo shopping for myself on Saturday and bought myself this laptop I am using right now, so that can stay comfy on the sofa but still chat, as finding going out to the study a bit of a pain and gives me backache!!! Feels good to spend some money on me for once.
Hope everyone is OK and had really good weekends. Allie, sounds like you are having a spending spree too, hope the mini is great, although bet it is dragging as you can’t wait to pick it up!!! Sent my letter to the onc today, and thought about what you said Allie, but gonna see what the onc says about Herceptin and go from there.
Am getting really nervous about my scan on Monday now, it is creeping round and I have all sorts of thoughts flying through my brain right now … trying to keep positive though.
Kay, I hope that you are doing OK and had really good weekend and are not stressing too much about Thursday. Am thinking about you and hoping that all goes OK for you. Let us know too, when you can.
Jen, hope your appointment with the eye specialist went well today too, and that the news was good. Hopefully you will let us know when you can and we are all here to support you and help you if you need.
Anyone else I have missed, apologies, but hoping you are all OK. I am hoping to be more active again now on the computer, as got laptop, so will be more keyed up on everyone again. Feel I have missed a lot of goings on the past couple of weeks.
Take care everyone and sending lots of love and hugs
Dawn
x
Hi all
Having read your post, Dawn, I realise how busy we all are - and how we are all dealing with so much. I have been getting over Friday’s chemo - seems to be getting harder and harder and the energy levels are really low at the moment. Made it to work today for a few hours and then came home and slept. The uncertainty of what the next treatment step might be is also definitely getting to me but at least Thursday should provide some answers (just hope I like them!).
Really hope your scan brings good results, Dawn - how long do you have to wait for the results? And keep pampering yourself - mustn’t let that runny nose develop! Are you organising a birthday party for your daughter? Lots of 4 year olds could be great fun but pretty exhausting!
Do let us know how the eye appointment went, Jen, when you can.
Hope everyone else is doing well - hope the winter fair was good, Allie.
Lots of love and hugs Kay xx
Hi All
Well rang the chemo ward this morning to see if anything can take for my chest and runny nose and sore throat, as didn’t sleep last night thinking was going to be admitted to hospital and then miss my daughters 4th birthday!!! My temp was normal, so that was good. They told me to go and get an immediate blood test and make appoint for docs, which I have got at 3.15. If there is no sign as such of infection and temp ok, then will get oral antibiotics, but if all levels low and temp up will have to go hospital again. Am so peeeeed off, but if it happens will say I either need to be out on Sat pm, or have a 3 hour pass, to see my daughters party and same on Monday for her actual birthday. Keep everything crossed for me.
If things don’t go my way, will take my laptop and see if can get online through hospital, but not sure if will work. So obviously ifyou don’t hear from me this evening, you know its not good news for me …
Ah well, gotta go and get muppets cakes out of the cooker, made me make fairy cakes with her, and probably about to burn. Kay, my friend and I have a joint party for our little girls, as born same day, and it is at a indoor play area this year, as less hassle for us, as obviously didn’t know how I would be, so thankfully not much to do.
Hope everyone is good. And hopefully will catch up properly with you all later on.
Love
Dawn
xx
Oh Dawn - it just isn’t fair! Keeping everything crossed (as requested) that you are ok - and if you’re not ok now, at least that you will be better for Saturday.
Lots of love Kay x
Hi Kay and Everyone
Well here is the news … I am still here - yippee …
Sorry, not posted this earlier, but I went to docs, he listened to my chest, and didn’t seem overly concerned, my bloods weren’t on my records at that point, and he prescribed me amoxycilin (spelt wrong). Then got home and decided should call chemo ward, and as about to, they rang me. My bloods are still ok for now, although on their way down, so have to keep an eye on my temperature now, and also if start feeling funny to take temp immediately too.
So started my antibiotics as soon as home, and take another at bedtime. Chemo ward did say, that hopefully as temp still ok, might get 24 hour head start with tablets, and manage to keep things under control.
So lets hope I am going to be lucky this time and avoid hospitalisation and the tablets kick in really quickly. Will keep you posted, but hopefully will be good news … roll on Saturday and Monday.
Love
Dawn
x
Glad to hear you’re back home, Dawn. Won’t “uncross” anything yet though till we’re sure you are ok and can enjoy your daughter’s birthday.
Lots of love Kay
Hi to everyone (this is my second attempt having lost the message first time round)
Everything’s crossed for you Dawn and hope you get to enjoy your little girl’s party on the day.
Got back late from hosp last night as had a meal out and another tonight (will stop comfort eating when the clothes don’t fit). I have 2 tumours in my eye which can be zapped with radiotherapy, but as they’re small and behaving at the mo the eye onc is happy for me to continue with Arimidex, unless anything changes. He says if and when my onc wants to start rad treatment on my bones then have the eye done at same time. I see my onc on Thur to discuss these results, so will see what he has in mind.
I think I’m going mad, as one day I feel angry with my nearest and dearest, then one day cry bucket loads and next scared etc. I am also wondering if it’s now attacking my skin, as I’ve started getting red spots on my face, neck and chest. I think I have read that someone on a forum described skin mets as looking like insect bites.
It seems so confusing/scary to me when you’re all talking about the different treatments you are going through, but I suppose the best medicine is probably to keep our sense of humour.
I will give you an update about Thur - probably Fri as no doubt we will be on the lookout for another restaurant.
All my love and hugs to you all, take care, Jen xx
Hi Jen
It was me with the insect bires comment, but they are skin coloured raised solid bumps, so I wouldn’t worry (and apparently very rare!). Mention them to the doctor when you see them, but more likely to be some drug side effect I would guess (like every thing else!). Didn’t mean to worry you
take care
Susie
Hi to all
Can I introduce myself here ?
I have just been diagnosed with liver secondaries last week after being clear for four years and nine months (who was counting?). Its been a big shock as I went for routing appointment and themarkers came up high- straight in for scans and then wham. I have a 12 year old and live in SW london…I have been very suprised at how friends in particular have reacted to this - but thats probably a whole book to write…
I am having taxotere now…not too bad yet but emotional effects are, i hope to post more here as i feel incredibly isolated with this…
take care all
cathy
Cathy
Sorry about your situation and that so-called friends sound as if they are not being supportive. I had a chat with someone yesterday who finds that people think she’s cured because she’s had surgery, chemotherapy and radiotherapy. It is VERY wearing to have to educate people and I just don’t do it anymore - people should be curious enough to find out.
Anyway, please don’t feel isolated, we are all here to support you and listen to you so have a rant whenever you feel like it and don’t forget that the helpline and peer support are there - both excellent services.
Taxotere is a bit harsh but I didn’t feel too bad on it; I was lucky I think.
Keep in touch.
D
Hi Cathy
Sorry you have had to join us, and must have been a shock after 4 yrs and 9 months. We are a good bunch on this thread, and know what each other is going through, so help each other along.
Don’t talk to me about taxotere, as if you see from my posts, the last 2 have not been good. I had 3 x FEC (sailed through) and now had 3 x Tax and the last two have been yuk. Hospitalsed after no.2 and hopefully, fingers crossed, am right now avoiding having to go back in, as got antibiotics from docs yesterday, as think caught in time.
Come on here as much as you can and if you wanna scream, cry, shout, laugh we will all be here alongside you.
I have a nearly 4 year old (Monday she will be 4, party on Saturday) and a little boy who was 1 about two weeks ago). It is such a rollercoaster emotionally, but hang in there.
Take care and let us know how you are … and you won’t feel so isolated on here I promise you.
Lots of Love
Dawn
x
Hi Cathy
Welcome to the forums, I am sorry to read that you have recently been diagnosed with liver secondaries and just wanted to let you know of some of the support we can offer which may help with the feeling of isolation you have.
We have a one hour secondary ‘Live chat’ on Tuesday evenings where you can ‘chat’ to others who are experiencing similar feelings and treatments to you so will have an understanding of any concerns you have. You are also welcome to contact our confidential helpline on 0808 800 6000 for a chat to one of our specialist nurses for one to one support, advice and information and a ‘listening ear’.
The following link will take you to a booklet written by Breast Cancer Care which contains information about a secondary diagnosis, treatments and support available:
breastcancercare.org.uk/docs/sbc_sept_2007_web_final_0.pdf
The helpline is open Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Moderator
Breast Cancer Care
Hi KatherineM
I’m being treated at St George’s, maybe you’re there too. Friends can be odd - when I was diagnosed some of them were marvellous and people I barely knew went out of their way to be helpful, but others clearly don’t want to talk about it and prefer me to “carry on as normal”.
Hi Dahlia and Dawn
thanks for the replies already, I appreciate it.
Sorry to meet you in these circumstances…its a bit of a relief to talk to anyone who really knows what I am now dealing with as you get such nonsense from people…
Dawn hope the antibiotics are good - sounds like you caught it in time…
Cathy