thanks for chantals birthday wishes, she looked a momentarily confused at bedtime when i said see you when you're 7 🙂
Liz - its easy to do too much when you're feeling well, hope your aches and pains subside xx
I got 2 packs of Letrozole but I'm sure GP said it was to see how I got on with them so I'm hopeful of getting 6 month's supply next time. I feel that there are so many hospital appointments and check-ups that BC is always on my mind and I want to reduce the time taken up by it to a minimum and that includes having to phone for repeat prescriptions.
Still suffering the after-effects of chemo - very breathless today to add to the exhaustion and bone pain. I wonder, now, if I have overdone things building up my stamina over the last few weeks and now paying the price.
Lost all but one of my fingernails but new nails underneath. Like Gill was surprised for it to happen now when last Tax was mid-December. Hair growing steadily but quite slowly so congratulations to Theresa on haircut!
Kym: hope you are not suffering too much.
Gail: hope you get a good result from MRI.
Gill: good luck with the transfer and Happy Birthday to Chantal tomorrow.
Take care all, love, Liz, x
Hi Gail - we all know the waiting is the worst, and the not knowing when you'll get them doesn't really help. I'll keep everything crossed for you.
the se's are niggles more than anything, I can't really complain, well i did actually didn't I? I just didn't expect the nails so long after.
Teresa - As my boob's so swollen, it wasn't too comfortable before rads, but don't think it's any worse so far. I don't think you're mad going to the haidresser when your hair is coming in so quickly. I think it's another important milestone on the road to recover getting the first cut too. Hope it makes you feel more yourself.
Gill - It's horrible you're still having SEs so long after last chemo just when you should feel you've gotten away with hanging onto nails and hair should be coming back. Hope Chantal has a great birthday tomorrow. Good luck with getting your transfer; sounds promising.
I had the MRI for my liver today, so back to the dreaded waiting for results. Might get them at my rads weekly clinic review on Thursday, otherwise will have to wait till next week's review. Suppose it's understandable that they don't want to give them to you over the phone in case it's bad news.
sorry i've not been on for a bit, just catching up with whats been posted,
I'd also read about Gingerbud, and although i'd never actually seen any of her posts, I also felt so devastated, its so sad to hear of someone who has not made it and leaving behind such a young family, its heartbreaking 😞
On a positive Lulu - great news for your son, I'm sure you're so proud of him
Lizzie - i didn't get 2 packs of tamoxifen this time, they've told me to ask for 2 next time, hopefully thet'll allow it, maybe i should make an appointmebt with GP, and
Gail, you're rght about prescription costs, I do have them free here, but what about those of you in England, do you still have to pay if you're on long term medication?
Lisa - i've been having real achy legs too, i think for me it could be the tamoxifen, its worse when i first get out of bed in the morning, i feel like i'm 90 the way i hobble to the loo, then downstairs! Hope your rash has improved
Weme and Christine - sometime i wonder if we should ask about survival percentages, we want them to say 90%, but they don't, All I can say is that we all seem to be getting all the treatment available thrown at it and we're so lucky really.
Teresa - i've bought a 2nd hand stepping machine, i do feel my stamina is getting a bit better, when i 1st had it 10 steps and i was exhausted!
Kym - how are you doing? Hope this last one has been kinder to you, i very much doubt that it has, but at least no more of that horrible stuff!! Was it you who said chemo stays in your system for many months? Because i'm still getting some se's, my eyebrows have continued to shed, I thought i'd got away with them, but no, they're pretty thin now, and my nails have finally started to show signs that they're going to start shedding too. I'm not impressed, pah!!
On another happy note Chantal had a lovely 7th birthday party today, they made little models of unicorns / pegasus or dragons out of air-drying clay/dough, they all seemed to enjoy themselves, and now she can't wait for Tuesday for her actual birthday for round 2 of celebrations. Lots of cake eaten too 🙂
Work still going well, union lady is going to help with my transfer request, so my fingers and everything else will be crossed..sorry long post, catch up again soon xxx
Gail - glad rads going OK. I am quite sore, bra rubs so wearing support vest but only pop softie in when going out. Keeping on w the aloe vera!
Lisa I certainly had twinges in both boobs. My onc also said it is hormonal as your ovaries shutting down 😞
Christine good on ya! I so admire your faith, it is stronger than mine which is a bit pathetic at the moment.
Weme hows the tamox going?
I got an exercise bike / cross trainer on ebay the other day and have been doing 5 mins at a time here and there, finding it very good. Nicw to get the heart pumping for a change!
Am I mad? I am going to see my hairdresser on Friday! The hair is growing back thick and fast - it's not that long yet but all the wispy bits at the end are annoying me as they stick out at weird angles. I thought he might just be able to trim it all to same length - not exactly a cut!!
love to all
Lizzy - Good to hear you're getting your energy back. I seem to be getting mine back just in time for rads to wipe it out again.
Lisa - I think Lulu said a while back that chemo can cause pain in the good breast too as it's also killing healthy cells along with BC ones.
Pleasant - That's rotten you didn't get a decent break. And must be so frustrating having the broken machine with rads. It's bad enough having to go to the hospital every day without having problems.
Christine - That sounds like positive news about the nodes and it seems sometimes the chemo doesn't shrink tumours but still kills the cells within them so that seems good too. My unit told me not to look at the stats from the start, but maybe they'll be more willing to tell me about my chances after my Mx.
Weme - Good you've started the Tamoxifen. It's worth trying. If you already have hot flushes, it probably won't make them any worse. I think with the weight issue, it's more that it's harder to lose weight post-menopause. If you do have problems, might be worth trying to get a different brand as well. There's some info on other threads suggesting it's sometimes the fillers that cause the problems. Makes sense that you only take it for 5 years based on what Christine says about the risk of womb cancer increasing after 5 years.
Kym - Hope you're not feeling too bad just now.
I've had 3 rads so far and not too bad, except boob a bit more red and starting to feel a bit of irritation at base of throat.
He didn't say how high the risk of womb cancer is but it is surely lower than the risk of bc coming back or they wouldn't suggest taking them. I have a score of 3/8 but have been told 20% chance of working, I wonder how they work it out given we both had IBC to start with. I have spoken to my mum and sister about it and decided to give them a go so I have just taken the first one, let's hope the se's are small for all of us that need to take them.
I hope you all have a good weekend.
Teresa, you ask me how I feel about the 50% survival for 10 years, well the only worrying thing about the 50% is, that is the case if tratment is very effective, oops! It's not worse than I expected, I always had this funny feeling even before I knew it's IBC that I have a 50-50 possibility. I'm a Christian and a poorer prognosis makes me pray more and depend more on God, and the deliverance is more wonderful.
Good that rads are going well, "looking forward" to my ones, feel relieved that chemo and OP is behind me and think rads should be no bother in comparison, so I hope anyway.
Weme, my ER score is 4/8, they have just told me to take Tamoxifen, not given me the option. Today he said Tam could increase my survival by 11% which is very significant. I think if I were you I would take them and see how you feel when actually taking them as opposed to just think about it. You can stop them anytime, but at least you tried. I was told the risk of womb cancer increases if they are taken for more than five years, but how high is the risk, do you know?
Sounds like good news in the node department. My onc said to me the other day that node status more important than tumour shrinkage - so it is good that no traces of cancer in the nodes since the chemo, which has obviously got rid of it. So the cancer is HER+ve and Er+ve so you can have treatment to help prevent against recurrence. That is good. How are you feeling about all this? Is it better or worse than you had thought - I gather 50% is about the going rate for IBC. I hope you feel that you are going to kick that cancer's arse!!!! We are with you 100% of the way!!
I've been lucky with the rads so far - the only machine that broke on me was the CT scanner in the planning appt, so far so good otherwise. Been up this morning for number 8 - 5 more to go. Bumped into Pink Princess! She wasn't pink but was definitely looking good, and Weme who is now sporting a fine head of growing hair. Onwards and upwards, ladies!!
Lisa hope the rash is clearing up, and legs less wobbly.
Sorry no more individual mentions - gotta go to bed for nap am shattered!
Love Teresa xx
Oh, forgot to say, I mentioned my weepy toe to him and he says it is probably the chemo that has caused it and I may as well stop taking the ab's as they aren't really making much difference. He thinks once the nail falls off it should be fine, there's no sign of it doing that any time soon though!
Had zap no 10 of 13 today and an appointment with the onc. I had my suspicions that he wanted to see me because the path report has changed from initial dx. My original IBC was TN, they tested the cancer found in my lymph nodes and it turns out that that cancer is oestrogen + so, onc advises that I start tamoxifen straight away. Not sure how I feel about that, I was happy that I didn't need to take tablets or have any further treatment but according to path report it has a 20% chance of being effective. I also asked what the chance of me being here in 10 years and like Christine I was told 50% chance. So, I've agreed with tacking tamoxifen and I've got the tablets but still dont know if I really want to take them. The decisions we need to make are sometimes difficult aren't they? The daft thing is it could stop me getting bc again but could give me cancer of the womb instead, and of course the other se's like hot flushes and weight gain (I've got enough of that already) is another thing to worry about. I'm off to have a think about it and do a bit of work.
I saw the surgeon today for path report, he said they found 9 nodes and 7 of them had cancer but chemo did away with it. He said I could have had more healthy nodes they don't know that now because chemo can melt them away. The 7 nodes affected didn't have loads of bad cells in them though. The tumour was 7 cm and was still so after the OP, but cells showed a significant response and that's what they would hope for. Margins were clear, but he says there could still be cancer cells in the skin for example, they never know that. So without any treatment my 10 year survival would be 25%. With chemo it increases by 20%, with Herceptin by 30% and Tamoxifen another 11% if it all responds well. He did say though because it has been a big tumour and due to its node involvment and inflammatory character the 10 year survival is around the 50% with treatment working well
Pleasant1, machine keeps breaking! How reassuring! But at least your nearly half way through :). I should start rads in 3 weeks or so.
I've not been on for ages as been busy with other stuff and loads happening. But Lisa, you prompted this post! I read yours and want to reassure you as I had exactly the same rash/same place – but obviously on me! – and am sure it was because of the Tamoxifen as it happened to me soon after starting them. It's now completely gone and I just tried to ignore it as think it takes a while for our bodies to settle down after beginning the drug.
Lulu, (and all for a laugh) that relaxing break of ours turned into a joke. We drove all the way there; arrived 8pm after unloading a Morrisons shop, looked in the window; double-booked! Packed shopping in car, drove all the way home. More than a six hour round trip just to shop in Morrisons at Haverford West! We got home gone 11pm, totally done in and FED UP. It was all made more awful as my OH's father passed away on the same day so we had to drive to Dundee a couple of days later. So no relaxing before Radio for us!
I'm now NINE rads down, 11 to go. But the machine keeps breaking or power cuts or some spanner in the works so I've been cancelled twice and getting fed up of driving there and back for nothing. The machine that's currently working is old compared to the broken one and; oh long story but I moved hospitals due to distance and now wish I hadn't! How much do those machines cost? A small fortune no doubt. Lying under the old crappy thing today made me think it would be great to raise enough one day to buy one; not just for myself obviously!
Awful about poor Gingerbud and I can hardly read the forums these days for fear of feeling really down about the terribly sad death of anyone; let alone so young and with children.
Gotta go; neglecting my boys – another reason hardly been on here!
Best regards to all x
Lisa, I tend to agree with Christine. Could still be the effects of tax (supposed to take at least 2 months before chemo leaves your system). I had my last tax on Monday, and today I am getting my tax legs (heavy thighs, can barely lift legs up an put one foot in front of the other) when I can barely walk. Last week, before final tax, every time I bent down to get something, which was hard work, the pain in my lower back was just awful. I mentioned this to the BCN last Monday, and she said to just mention it to my Onc next time I see her. Lower back pain has gone, but I reckon all these chemicals are playin havoc with our muscles. I feel so flippin old, all creaky and very inflexible. I think we're going to be suspicious of every ache for a long time to come, and there's certainly no harm in asking about it. Give your BCN a ring for peace of mind xx
Lizzy, great to hear from you, and to hear that you are getting back to a normal life and that your hair is growing well! xx
Gill, I meant to say, great news as re heart scan, and good that all your sisters can be screened earlier if they are concerned xx
Lisa your legs sound like mine, not in calves but in my thighs. I think it's the Docetaxel causing this pain. My fridge is low and when going down in knees to get something out, this makes my legs sore too big time. Six weeks post last Tax and it is getting better but not away yet. Re skin mets, surely with all this chemo it's not mets! Good to speak to professionals though, hope she can put your mind at peace again. Love and hugs, Christine xx
Its just an odd rash slap bang in the middle of my cleavage and nowhere else. Looks like a raised reddish dry patch, almost like a touch of eczema. I put some betnovate steroid cream on it which has calmed it down but its still worrying. Im at my pre-op Monday so Im going to ask the BCN to look at it.
Ive also got this intermittent pain in my left breast which is worrying me no end as its always in the same place, I've checked it and there are no lumps but again....something to worry about, its always something.
I must say I've started to up my walking and the pains in both calves and thigh is awful when I start to pick up the pace, is that just from lack of use over the last 8 months does anyone reckon as my mobility really took a dive? its really achey. has this happened to anyone else
Hi ladies, just dropping in to say Hi. I've not been on for a couple of weeks as have been totally manic at work as it's our year end and I also seem to be back in the swing of things. My energy levels are pretty much back to normal save that I am pretty shattered in the evening after a day at work. My fingers are still numb and veins still sore but my hair is now growing big time and I reckon I will be the pre-chemo yetti I used to be before long. Still getting loads of hot flushes.
Gill, Glad you managed to get two packs of Tammoxifen...I am seeing my Dr on Tuesday as my onc said I could have 3 months worth. I do hope so as it's a pain having to get to the pharmacy now I'm back at work.
AmysMum- I sympathise with the lack of sleep. I can't remember the last time I slept through the night. I wish my body would decided whether it's going to be hot or cold!
Well done for all you ladies who have finished chemo and getting on with rads.
Take care all
Gill - Good to hear your heart scan was fine and that your sisters can now be screened earlier. Great your still doing so well at work. Save some energy for the birthday party though. I just got my first Tamoxifen prescription 2 weeks ago and they gave me 2 packs. I was wondering if it was to make you pay more for the prescription but remembered you get free prescriptions in Wales too, so that wouldn't make sense. It must cost more in admin as well.
AmysMum - Hope you get more sleep soon and it's good you're not doing too badly on rads so far.
Lulu - Just as well you insisted on having the abscess removed. That's really good news about your son too.
Kym - Thanks for thinking of me. I'll be thinking of you and hoping you pick up soon post-Tax.
Lisa - Hope you've stopped worrying about skin mets, I'm sure it's just a rash from the Tax as you've had such awful skin problems with it.
Finally started rads yesterday. Still seems a long way to go and too early for SEs yet.