Funnyface Good to see some pictures of your home. I used to like snow but have gone off it recently. Your house looks like it's out in the wilds but maybe you've just got a big garden (yard)? -Two nations divided by a common language! B xx
Carolyn, I work at the senior center and even the seniors with canes are faster than me! I really think I've done too much sitting around with these knees!
Oh, I'm not active and fit! That's the problem. My knees can't take the uneven turf of the wood a! I so of never be able to walk up that drive! I walk slower than most elderly people. I get out of my car in a parking lot and people in their 80's pass me and are in the store in half the time. I really need to push myself this summer to improve walking! Our house is modest for this area. Most of the homes are a lot bigger and fancier. I would truly like to move in town. I love it out here in the sticks, but too much work.
Carolyn, The driveway picture with the plow showing is looking up our drive. The house is at the top. The other shot is taken from the same spot but looking down the rest of it. That was snow on the drive that turned to an ice slab all the way from the top. The drive is stone so when you plow you always have snow left. This compacts and then and turns to ice in a few days. We have to go get stone from the quarry and sprinkle the whole drive to get the oil truck in. FF
Carolyn, We have a GO, but can't use it bc it's not finished. Hubby built our house and we ran out of funds. DO is still cement block waiting for stone. We have never come up with he funds to finish it. Needs stone and hearth. I keep trying to convince hubby to dry wall it in, make a nice hearth and mantle. Haven't mentioned it for awhile, but maybe I should try again. We have oil heat and also a coal stove in basement. If we spread our heating costs throughout the year it covers about $200 a month to heat the house. It is a single 4 bedroom house with a finished basement. It's fairly large for 2 people! Except when we are on each other's nerves! I would like to down size and get something smaller and easier to maintain. Our driveway is difficult!
Haha Caroline yes it is a big doc & can certainly wait until the New Year.
Nicky agree with you. 12 years ago the HER status was never mentioned to me and it was only when there was so much press coverage re Herceptin that I phoned my surgeon and asked for my lump to be tested. I had a bone biopsy when I was dx MBC recently and had an anognizing wait to find out if status had changed which in my case it hadn't but it shows how things are moving on quickly. Just had a lovely walk across the fields with my dogs a 16 year old Border Collie Bella & a 18 month old Wolfdog - yes he really does have Wolf in him. Bandit xx
Good morning ladies! I'm on the lighter side of conversation today! It's 7AM here and I'm hanging out in my PJ's. Quite cold for Dec. It is 25F out today. We had a little snow and now freezing rain! The last two days was bitter. It was 12F which when I converted it that's -11.11C! I finished my shopping yesterday except 2 things. We were completely in the opposite direction, got home at rush hour, my knees were killing me, and I couldnt take any more cold. The 2 places I needed t go to were in an area that's crazy with traffic at that time and would have been worse on a Friday night, with snow and Christmas on the way. These 2 places are 5 mins from where I work so I will go there on Monday when it's not so crazy! Cookies are made, house is decorated, cards sent, now for wrapping or maybe some rapping too. Then the cleaning! Hoping the electric stays on with the ice! Have a great day! FF
Hi Bandit. I agree about having knowledge - it gives us back some of the control that we crave after this SBC diagnosis has robbed us! I just wanted to point out to any newbies that not all drugs available in the USA are routine in the UK. However it's always good to know what is out there, hopefully the drugs will then become more mainstream as Herceptin did all those years go and now Pertuzamab (which is now available having been on the CDF list for ages). I have always researched as much as possible but initially there is so much information to try and absorb you don't really know what is right for you. Having said that I have been living with SBC now for over 8 years so I've had plenty of time to learn! This forum though has been a real source of good, non-scary information about treatment. I only learnt from here that your receptor status can change which is why I asked for a liver biopsy in 2013 and found out that after 10 years of being HER2- I am now HER2+. No one else even mentioned it, even my onc was surprised that it had changed but it did mean I moved on to more targeted treament. I definitely challenge my oncologist about his decisions, something he's had to get used to - poor man - and have sought second opinions to back up what I've learnt or to confirm I'm on the right treatment. All things we could and should do if in doubt.
Enjoy the wrapping - and rapping 😊🎁🎤
Hi Nicky. Good point you make about the Bestbird document being USA based however it gives lots of information about the different types of MBC and the drugs that are available most of which are NICE approved. However the drug I am on is not yet approved in the UK and therefore I am on a trial but I think it is good to know what is out there or in the pipeline. For us new to this there is so much to take in and we don't always know the questions to ask or have an Onc who is as clued up as we hope they are. I remember the fight that was put up to get Herceptin approved in the UK and what a difference that has made to lots of the HER + ladies. I have been extraordinary lucky to have 3 great Oncs involved and put onto a trial for my ER+ HER - type of breast cancer but this document is useful and FREE. If you decide to download it and have a look through I would be very interested in your thoughts. I don't know a single MBC lady (lots of friends with BC) and the forums and this document I think are wonderful places to gain info and support. As we know if or when the drugs we are on stop working there are lots of others to try and I just want to have the knowledge to be part of the process working with the Oncs as to what I might be next prescribed. Hope you and everyone else have a great day. I shall spend the morning wrapping or maybe rapping. Bandit xx
Racer, great news that your platelets count us on the up and you are not sitting on a hospital ward this weekend. Much better to be at home and fingers crossed your onc has some positive news next week when you see him.
Bandit - well done you! If you feel good why not get out there and have some fun - I do whenever I can. I'm sure you know to pace yourself so you don't suffer afterwards either with aches and pains from the SBC or a hangover if you over do it!
Bel - quite a few of us get PIP, through the DS1500 route and it definitely helps with the financial worries. Because you get this you should be accepted to get the support group ESA also. If you have paid your NHI contributions (and there is a means tested route as well) it is paid if you have had to stop work, or reduce your hours, due to treatments you are on. Although it is for any primary cancer patients on chemo and/or rads (amongst other sickness related conditions) to help them there is a long term element for those of us on constant treatment once we have secondaries. Worth a look.
Welcome Catherine to our friendly group of ladies. We are here for support, advice, a place to rant and to have a giggle at times. It will of course be a huge shock that your BC has come back and there will be a lot of info to take on board. I think all of us found it easier to cope once we had a treatment plan in place. Ask away with any questions you have and there is a Triple Negatives thread on here which is more specific about types of treatment available.
A question about the document relating to treatment options, is this from the US? If it is it's worth noting that all treatments are available there (providing the patient is paying for health cover) whereas in the UK some drugs are not funded through the NHS (although are generally available if you do have excellent private health insurance). Also a list might show everything that can be used for SBC however depending on the type of SBC you have only some of them will be approved for that type of SBC.
Welcome Catherine! There is a bunch of lovely ladies hanging out here. It's a great place for support and a wealth of information. It is very scary in the beginning, but hopefully you will feel better when you get a treatment underway. FF
Hi Catherine. Sorry you are joining us here. I am just home from a party standing in stick heels and enjoying myself as if nothing was wrong with me - took lots of pain meds before I went out and will pay for it tomorrow no doubt however tonight Cinderella was at the ball. Got another party tomorrow/today so wish me luck! Please see below Bestbird details
1) Email your request to firstname.lastname@example.org
2) In the Subject Line of your request, type in the words: MBC Document Request Terms Accepted by <your email address>
This is such a good document and I think everyone in our position needs a copy.
Hello Bandit and everyone else. I've just been diagnosed with secondary bone mets after finding a lump in my neck. Not started treatment yet. How can I find that document you mention from the lady who knows about all the different drugs please? I'm triple negative and my primary was found last Christmas and everyone thought I was cancer free after that round of treatment, so this is a really big shock. Thanks. X
thank you for all your kind and informative words. I will certainly check out other sites re drugs I'm on as haven't really been given much info. In the past 11 years I have been continually on hormone therapy and had, arimidex, exemestane and letrozole. Are there any other ladies on faslodex injections? On the chemo unit the nurse told me they have never given before and I'm the only one having it! I have it monthly with my denosumab. Two jabs in the upper buttock! Have had 4 now and are is still very sore 2 weeks after it's given!
Currentley having a break from working but hoping to work part time in the new year, so I'm ready for Christmas for once! All wrapped and turkeys waiting in freezer! (Yes pleural as we fattened our own, not sure I want to eat them now though!)
on the plus side my GP gave me a signed DS15000, I think that was what it was called, and I'm now receiving PIP at the enhanced rate plus mobility, which I queried because I am mobile, but I was told was eligible as GPhad signed form. Does everyone know about this? Or get it. It does help with extra costs and as I'm self employed no sick pay!
Sorry about another long post.
Enjoy the weekend. Xxx Bel xxX
Welcome Bel, I wanted to chime in and introduce myself. I'm 62, my primary was in 1995. My lung mets were discovered in 2005 along with almost ever lymph node in chest involved. Last year my oncologist retired and my new oncologist said my bone met in my spine was stable. Old onc never told me I had a bone met. New one said its been there a long time. I have been through a few chemos and currently I'm on pabociclib/letrozole. I have been on this combo since Aug 2015! I live in the USA, about 1 hour west of Philadelphia, PA. I also get around fairly well. My biggest problem is the letrozole is killing my knees and muscle strength. I still work PT. I wish you the best. FF
Hi Bel. So sorry to meet you here but as Caroline says this is a nice friendly site. I do however also use Inspire and community.breastcancer.org which although also mostly US based is very good and you will find lots of threats re the drugs you are on. On both those sites are several really clued up ladies and particularly Bestbird who will email you a wonderful document that gives information re all the types of MBC and treatments. She has research and put this document together but it seems a lot of ladies get mor information from this than from their Oncs. I was Dx in 2004 and did 5 years of tamoxafen. Did try Letrozole for a couple of months but it was discovered I had not gone through the menopause so came off all drugs. I don't regret that as although the thinking then and now is to have 10years plus on treatment I am glad to have been drug free and looking at the info there is only a small percentage of protection which I personally feel was not worth the s/e's of the drugs - just my opinion. Therefore I was 12 years from primary dx & not doubt like you shocked to find that I now have mets in the spine and ribs. I really think that the Denosumab makes my pain worse for a few days after the jab however maybe that is because I also have extensive arthritis to my spine. Otherwise I am on the 3rd cycle of my drug trial and so far it is very tolerable. Like you have have my next scans in January. Obviously if they show progression I am off the trial - scary. I have ct every 3 months and bone scan every 6. I am very well looked after but also not allowed to take vits, herbs etc. My hair is fine however my skin looks a bit more aged but that could also be the stress of the last 4 months. I would love to have a bit of botox or something but I think the trial people would have a fit as I am not even allowed acupuncture. Still I'm still attending drinks parties (I look great in dark corners) and having fun. Yes it is the most horrid news to receive and if you read the stats etc you get very shocked but I feel fine and am still living a normal life at the moment. None of us get out of this life alive but just because we have been given a sell by date doesn't mean that we won't go on for many yeas. Sorry if I have bored you all with this over long post. Bandit xx
Hi ladies, and welcome Bel to our family - as already has been said. You have done well with the various hormone treatments all this time so I hope the new one keeps things stable, or better for a long time. This thread tends to be the most active one with ladies with or without bone mets (but always with some form of mets) joining in for support, advice and a giggle, so it's a good one to keep in contact on.
Thank you ladies for your words of support as I face a new treatment, arghhh. I was due to be in the chemo unit for 9 am however I got a phone call from a very kind nurse to say that the pharmacy wouldn't have my drugs ready before 11 to warn me not to come in. Now, that's what I call service! So I've managed to get on with some of my Christmas wrapping, have a nice cuppa and will head off in a moment. So much better than hanging around on the unit although I expect a bit of a wait once I'm there as the new drug, Kadcyla, obviously isn't prescribed that often so probably still won't be ready for my infusion.
FF, hope you have managed to get all your jobs done before the weather closes in. We're set to have another mild Christmas in the south of the UK, not sure how cold it will get up north but we don't get the extremes that you do. Hope you have all the right equipment to cope, something that none of us ever seem to have!
Take care all.
reading your posts it seems as though we are in a very similar situation. I am on denosumab and faslodex after a secondary diagnosis in September this year in my spine, sternum and ovaries.
i too experience aches and pains in my back and hips, which is often much worse at night, and depends on what I do in the day. I also experience extreme tiredness which I'm not sure whether is normal or not.
my background is primary 2005, at the age of 44, chemo FEC, radio then recurrence 2011, all the time on hormone tablets, tried them all! Once said they must have worked fairly well as help it off for so many years, hence now on faslodex injections monthly to see if that does the trick for a bit longer! First scan since diagnosis in January so getting a bit anxious! Hoping all is well.
good to read on here other experiences as it helps to keep me sane! The mental part is the hardest!!
sorry for long post.
Thanks Ladies for replying to my question about whether bone met pain once on treatment is good or bad. If anyone has any further input I would be very grateful. Xx
Hi Nicky, nice to hear from you, good luck with the Kadcyla, don't know if you saw my post yesterday? My friend has been on it for 6 years now and has done really well regarding s/e but she does get very tired!
Hugs Janette xxxx
Hi Bandit, I also had a particularly uncomfortable night with my hip/ leg, it's like really bad toothache right from my hip down into my foot. I don't think the colder weather helps us boney ladies, I struggled all through last winter with it then through the summer months hardly any pain!
Hope this helps.
Hi all, after some advice. I am having a whole spine MRI on Friday just to check no progression. I've heard it's very clangy and noisy and can take half an hour but they have music. Does anyone know if you can take your own and is it cd or mp3? I am slightly dreading the experience and would prefer my own music if possible.
Nicky, We will be on the same mission over the next few days. It is supposed to get really cold here and a snow storm Saturday. I've decided that I will have my shopping finished by Friday night! I then can finish cookies and wrapping by Sunday! I'm tired, but I need it finished so I can rest up next week! We can do this!!
Carolyn, I can relate to you with the eggs. I think I told you this. I had to eat orange popsicles with my first chemo. I was feeling queasy and the orange smell was so strong and they gave me an orange popsicle with a strand of slime hanging off the end. I hurried and chewed it up to get rid of it. They came by and asked where it was. I told them and they said to keep from getting ulcers in ny mouth, I needed to suck on it the whole infusion time to constrict the blood flow to my mouth. They only had orange and ice chips made my teeth hurt. That was 21 years ago and I still can't take the smell of orange jello. It's hubby 's favorite!
Hi Carolyn and thanks for the good wishes. I had been feeling pretty confident about lack of side effects from Kadcyla as I chat to a lady on the chemo ward who has had it for over 18 months now and seems to get very little in the way of SEs. However, reading the thread on here has made me more aware that I could feel a lot more tired etc than I first thought. So, I've been dashing around like a mad thing trying to get all my Christmas bits done before Friday as I'm not sure if I will be able to face any shops etc next week. Add into the mix our EDs birthday last weekend it means it's always a busy time of the year, but this year more so as I'm effectively missing last minute shopping time next week. It does help focus the mind though! Plus I will just have to send our YD out on shopping trips if I've forgotten anything.
Its been very interesting reading about your itching! I had put down my itching (mainly arms and sometimes scalp) to my other drugs namely Herceptin and Pertuzamab as it all started then however at the same time I also started letrozole so maybe it's that rather than the other ones? Who knows! As it is I'm due to start Kadcyla this week so will come off letrozole and the other two drugs but will be on a new combo. No doubt with its own list of things I can look out for.
As to letrozole causing palpitations, when I first took it back in 2008 I had palpitations and put it down to this hormone drug - strangely it is/was the only AI drug that listed palpitations as a side effect, the ores (anastrozole and Aromasin) didn't, but maybe they do now. I came off letrozole and went onto anastrozole however the actual culprit turned out to be the E part of FEC which gave me long term heart problems and is well known for doing so, although luckily not in too many cases.
Bandit - sorry I can't help with your question. Although I am on Denosumab I have never noticed any extra aches etc either after I've had the injection or even before the next one is due. Hopefully it is down to bones healing, which can cause some aches and pains, or the side effects of the hormonal treatment you are on. If in doubt or it gets considerably worse maybe you should speak to your BCN?
Morning everyone. Hope you are doing as well as can be expected. I have mets to my spine and ribs as well as oestoarthritis. I am on Palbociclib, Letrozole and Denosumab. I have noticed after the Denosumab I usually feel more achy however in the last few days the pain in my ribs and hips has got worse. Last night was very uncomfortable. Could this be meds not working or bone healing? I could ring onc & nurses but know they will tell me to wait until scans in January however I guess you ladies probably understand where I am coming from. Bandit xx
Jbug, Thanks for that info! I will pass that onto Steve! Just never know with these crazy allergies. FF
Hi funnyface, I also cannot eat peaches, nectarines, english apples, plums...also get itchy mouth and throat with walnuts and hazelnuts. Had tests and it's something called a Birch pollen allergy, meaning that any fruit from the Birch tree family causes the reaction, also will cause hayfever at the time of year when it pollenates too.
Stacey, My SIL can't eat tree fruits. He says the skin on them make his mouth itch, especially apples. He can eat apples that are peeled and baked. I always wonder if it could be a chemical they are sprayed with.
If you venture into eggs again perhaps try duck eggs? Maybe 1/4 of a boiled egg and see how it goes. Some of the supermarkets stock duck eggs and "ya never know" .. you might not get the same reaction.
I can't take Letrozole. It gave me a very rapid heart beat and palpitations ... so much so the GP sent me for an ECG the second day I started them. My oncologist thought it might just have been stress, but after 3 weeks of waking up at night with my heart racing like a flock of butterflies in a hurricane I decided it had to be the Letrozole. Two days after I stopped them my heart was back to normal. So now I'm an Anastrozole, which I do not think is working, but anyway, my stomach has been a mess for the past 6 or 8 weeks. It constantly feels upset. No more problems with chocolate than anything else though!
Oh Carolyn, so sorry you have had another reaction - you were so pleased the other day when you thought you could eat them again! By the way, might not be chemo caused - if you have the flu jab, they breed the anti-whatsits in eggs, which is why they ask if you are allergic before they give it. It might have been a flu jab set you off originally. Sorry, too, about your front door! Wow - they have you over a barrel I suppose - a bit like plumbers!
Sorry I haven't been in touch over the last week or so - I honestly don't know where the time is going to! I expect you are finding the same. We will have to have a proper catch-up after Christmas once all the excitement has died down a little.