Hi Hopefullyholly...i cant really offer much advice or answer any of your questions but just nted you to know we are all here for you. Please keep us up to date with any decsions that are made. Try and stay strong....easier said than done i know. x
Helen etc..its so lovely to know thaqt i'm not alone in worrying about my own mortality, which is especially hard when someone 'in the limelight' dies. I do try to take encouragement from the stories of people living for years but the uncertainty is awful, as is the strain of putting on a brave face for everyone else. I very often wish i could just crawl away but then think about my daughter and know i have to keep fighting. So so har though and i wouldnt be able to do it without this form...thank you all.xx
Hi Marirose, glad you found the links useful.
There are two online booklets, this is the newer one,
and here's the older one,
Hi all haven't posted on this site for a while.
Hello to all Newbies sorry you have had to join us but you will find this thread very informative and many Ladies who have had simular experience's as yourselves and living many years one is Belinda who posted on Inspiring Secondary Stories page 3 wish I knew how to copy and paste the web site she used. Belinda if you are reading this I found the stories of long livers in Australia and it was very encouraging. Julie and Janette also give good advice.
Being positive and being strong keeps us all going but hiccups do come along A good place to go to is the Cyber Cafe where it is cancer free and you can be as stupied as you like. xxx
Hi Emerald 1959. I've had bone scans and I was allowed to leave the dept after injection but had to avoid close contact with children and pregnant women. Red
Mmm I have have to admit I was shocked at Jackie Collins death has made it seem real if that makes sense? I was only diagnosed middle of last month so still trying to get my head round things trying to remain positive but admitting to occasional slips and feeling of doom! Have a friend coming for lunch today he is an ex pyche nurse and is going to teach me some mindful exersises
Of to have my first bone scan tomorrow does any one one know if they let you out of the dept after you have had the injection? or do you have to sit there till they do the scan 2 hours later?
Good thoughts to all
Helen, I totally get what you say and you are not being selfish, I'm sure all us met ladies (and people living with other cancer's) all feel the same at some points I certainly do and when you hear news about someone passing it always brings those scary cancer gremlins to the surface, I was devastated when I read about Rio Ferdinand ' wife dying earlier this year I just could not shake it off!!
Like most I keep a "happy brave face" on things for the most time and try to keep my fears locked away in a little box in the back of my head 😓 it's my way of not letting the bugger beat me!!!
Red, thanks for the website you mentioned I'm going to have a look at that.
Hugs Janette xxxxxxx
I am sorry you are having such a worrying time and hope that you can get some answers soon, it's horrible being in limbo and weekends are particularly hard.
In answer to your question about staging and mets, it would seem logical that the higher the stage the more likely to get mets but the reality is not necessarily the case. Cancer is an unpredictable disease and even women with grade 1 cannot be guaranteed a life cure, so I don't think you can read too much into staging and future prognosis.
The decision about radiotherapy to your breast will need to be made by your team but it won't necessarally need to be put off whilst you are being 'investigated' I think it will depend on what they think will be the most important....
Sorry I've not been much help but I wanted you to know your post had been seen and your situation recognised. I really hope things move quickly and you get answers soon and know what options about treatment are available. Please let us know how you get on when you can. Good luck
Hi Helen. Yes I was shocked to hear about Jackie Collins and it does make anyone in our situation panic. I have found some comfort from Metastatic Breast Cancer Network website as there is a section there about people who have lived and are continuing to live with mets for over 10 years and one lady is still living 17 years after diagnosis. I too try to pretend everything is normal to protect my children because I don't want them to have to live with my worries and why should they. What annoys me is all the cancer adverts on tv when I'm in the middle of watching a lovely programme with my children. I can't get away from it!! Red x
I hope you don't mind me coming in to your thread. I haven't been diagnosed with bone mets but I have concerns about skull mets. My story in brief: diagnosed with stage 2 slow growing invasive ductal cancer in April; had WLE with clear margins but spread to 1 lymph node and 2 illegible nodes, extracapsular spread and focal vascular spread; had all lymph nodes removed followed by 3 FEC but 3 T cancelled due to complications (blood clot caused by picc, infection and kidneys struggling). Due to start radiotherapy on Tuesday.
Routine appt with GP on Fri and I mentioned changes to the shape of my skull - the bone in the front of my head, from the hairline is raised and painful (like the clingons in Star Trek!), my skull is also raised on the left side. Because I noticed this about a year ago before my BC diagnosis my GP said it's 'unlikely' to be skull mets and could be a condition called Paget's Disease which is a thickening of bones. She sent me for an xray to check for Paget's and 'exclude' skull mets but the radiographer refused to xray and said I will need a scan to check for / rule out either or both.
I know it seems odd that I didn't get this checked out before but tbh, it seemed a bit silly to talk about my skull changing shape, then I had family bereavement then the B.C. diagnosis so my focus was on that.
I'm worried because a) the mammogram that detected my BC was a year late (that's another long story), b) I've looked up Paget's Disease and skull mets and the symptoms for both are very similar, as is the treatment, bisphosphonates? and 3), if it is skull mets, should the radiotherapy on my breast be postponed until I know for sure?
I was unable to get hold of my oncologist or BCN on Friday so have spent the weekend getting increasingly worried. I am trying to be positive and keep an open mind until I have the scan but I think it's too much of a coincidence to have a primary cancer and a condition that mimics skull mets.
If it is skull mets, the cancer had already spread before my BC was diagnosed but then there was a 4 year gap between my 1st and 2nd mammogram. Does the staging of BC determine the chances of it metastising? Mine was Stage 2.
I'm sorry for such a long post with so many questions. I just wanted to make sure I explained my situation as fully as I could and could do with talking to others who have experienced waiting for results for mets.
Wishing you all the very best and thank you for reading xx
Hi everyone hope you are all doing ok. Lovely weather at the moment ,went to the beach today as it is near where I live bit tiring though walking back up the cliff! I am on my third week of cape so no tablets still wondering how long for side effects to kick in feel a bit tired but still suffering from my tooth extraction so could be that. I expect the se to get worse but woild be great if they stayed the same ...and it worked! Watched andy murray play tennis for the davies cup and didn't think about cancer for a few hours result!
havexa good week everyone xxx
Hi All. Yes it has been a bit quiet on here lately. I've been feeling a bit rough since day 8 of Vinorelbine but am now looking forward to my week off and some kind of normality. So glad you had a lovely time in Cyprus Janette. Red x
Hope everyone is doing okay, sorry I'm one of the guilty ones who have been absent for a few weeks, just got back from Cyprus, had a wonderful time the weather, people and hotel were all amazing.....Already looking at prices for next year!!! 😉
Hi to all the newbies, you are all in good hands on here, everyone is so kind, caring and knowledgeable on living with this horrible disease.
Off to get all that holiday washing done now!!
Take care hugs Janette xxxx
Well done! It is hard to see complaints through , so stressful but so worth it when it has an impact. I'm pleased you got an apology it's the least they could do. It's really good that you've made a difference and the new procedures should now prevent others having to go through the same.
Now give yourself time to relax in the knowledge you have made a difference.
Chocs you are right, it is quiet here, hopefully people are busy doing nice things. Take care and lots of love to all my lovely friends here xx
Marie, I'm so pleased. This is so important and like you say, no one else going to your hospital should have to suffer the same as you did. I'd like to think they've given you some financial assistance as well but I'm sure that's just going too far.
Hope you manage a decent weekend. Seems very quiet on here at the moment.
huge hugs everyone
Good evening lovely ladies,
Welcome to newbies and hello to old friends. Just a little update . To those who may remember my disastrous start to all this , I have had an answer to my formal complaint. A full and complete apology from all those concerned, Also and this is the important part, new proceedures are now in place. This is what I wanted an apology and hopefully the new ladies having to face this at my hospital will have a better start. I know it is very difficult for all of us, but if we can improve sevices, raise money and help each other we are really giving cancer the bully what it truly deserves..
Take care everyone and to all rugby widows good luck for the next six weeks.
Love Marie xxx
Hi Emerald, welcome to the thread. So sorry you've had to join us but you will find a fantastic group of ladies who are ready and willing to offer you support and advice. Don't be afraid to ask anything, or rant, scream, cry etc. it's all permitted. You've been on a roller coaster haven't you? I really hope that when you go back next month you will see improvements and your treatment is working. In the meantime look after yourself.
FF and Stresshead - so sorry you are having a difficult time. I'm sending you both huge hugs. Some days are just so difficult but hopefully things will pick up for you both soon. xx
hello to everyone else. Absolutely miserable weather here, so caught up on a few TV programs under the duvet today. Back to work tomorrow so hey ho.
huge hugs xx
FF..many thanks for the info on ibrance. I had letrozole which ddnt work at all so thats maybe another brck wall. 'll certanly go on the webste yo suggested. x
Morning Ladies, especially the new ladies - you are struggling in a similar way to the way I was on diagnosis.
Emerald I was put on Letrozole almost three years ago and it has kept me stable with no progression and some resolution ever since. They can't see my bone mets any more.
BJH - i had a R mastectomy and lymph nodes removed but they discovered at the time of the op that I also had cancer in my other breast. Lots of tiny tumours too small to show up on the MRI. They then did CT scan which showed spread to bones and peritoneal area
When I asked them for a mastectomy on the other side as well the surgeon said that since the cancer had spread it would be a futile operation. Like you I didn't understand why so he explained that when we have primary cancer the chief concern is to get rid of it, either by surgery or chemo in order to stop it from spreading.
Once it has spread their main concern is to stop it from spreading elsewhere - or to contain it so a mastectomy is not considered necessary. The treatment for the secondaries will also stop the primary from progressing any further.
The surgeon gave me a life expectancy which I have outlived, my Onc doesn't agree with 'statistics' and told me to disregard it.
Something I can't really understand is.... Originally a mastectomy was planned for me and also a few others on here I gather. They say that now a mastectomy is no longer required as it has metastesised. Can anyone shed any light on this ?
Morning Emerald. I had the same thoughts when I was put on Tamixifen - a tiny little pill !! but it made me NED for 3 and half years. Trust them they work!! kind regards SS
Just joining this group
I found a very v small lump and a skin crease that was new in early July GP could not find it was asked for recall which I went along with, still nothing! she did not want to refer me under the cancer 2 week wait rule but I was lucky as I have insurance via work so went with that.
First visit yes it was there, biopsied, Mammagram (not seen on that) ultrasound yes confirmed.
2nd visit yes stage 3 aggressive plan surgery, chemo, and radio need MRI
3rd visit MRI showed ivasion of chest wall and ? sternal mets no surgery now to have chemo to shrink it then surgery CT scan requested
4th visit (last week) this time with oncologist, surgery told now probably never, bone mets with possible liver mets, chemo no not at the monent, so treating with letrozole and bone strengthening treatments.
And yes I would like it removed! but my understanding it never will be right breast now looking/ feeling more wonky than it was, the lump is bigger and is now easy to feel
I also am feeling iching in area over the tumour plus twinges in the area plus twinges in multiple boney bits but was told that a side affect of letrozole could give you joint pain so not sure which is which! I must say I look at the single little pill and think is that it!!!! I want bigger gunned treatment!!! but am running with it and see what the return to the oncologist brings at end of October
Should be having a bone scan prior to that
Wishing everybody well xx
yes, i thought it was 6 months. Thanks fpr the 3 years I'l take that. you are really going through it too FF. This si so sh*t. Big Big cybr hugs to you.xxxx
Springsummer, I was just googling lymphangatic spread and the one site said prognosis used to be 6 months but now is usually 3 or more years. I'm going for MORE!! FF
Springsummer, I'm scared too. I'm tired of all of this! Then I added in the bum knee and now some dental issues. My knee just quit hurting. It seems the gel injections have started to work. Now I'm scheduled to have 2 molars pulled. It's not in my budget to fix them or do implants. It has me very upset to lose them. You
can't see them when I smile, but feel like here goes more of me crumbling away. It has pushed me over the edge and feeling very low. Hang in there! FF
I've just back from hosital after a drain to my plureal effusion but am still breathless. the doc told me they saw something on the scan that looks like lymph spread in the lungs and that could be the reason i am still breathless. the only thing they can do is wait and see if the drugs start working. havent worked yet but this is my first cycle and they keep tellimg me its too early. feeling very down down and feel i will never enjoy another day not feeling ill. feeling sorry for myself and not strong but i know the prognosis is not good. thinking about asking my brother who lives in spain to come and look after me! my mind is racing ahead SS
Hi BJH. Sorry you've had to join this club. I was diagnosed in 2005 with my primary bc. Recurrence in neck node in 2008 and been fine since then till a few weeks ago when I was diagnosed with it in my shoulder bone. The ladies on this thread have been very supportive and helpful with advice for me. While researching the Internet, as you do, I came across the Metastatic Breast Cancer Network (MBCN) where I read about lots of ladies who have been living with mets for 10 years and more. I took comfort in this as I too have children who are my main concern. Hope this helps. Red x
Hi, it's my first time on this thread
I was diagnosed with breast cancer in April. I had a mammoplasty then pathology showed that it had spread to the lymph-node and the tumour was twice the size as originally thought along with other tumours which were taken out. I have DCIS left in the breast and a mastectomy was planned followed by chemo and radio. however after a routine CT and bone scan followed by sternum biopsies it was diagnosed that I had secondary breast cancer in the whole sternum. Removing the sternum was discussed as an option but not now, they are going to pursue chemotherapy followed by radiotherapy then Tamoxifen and bone strengthening drugs.
I had my first chemo (FEC from FEC-T) on Monday. Only minor side effects so far but was taken into hospital to be checked as I had a reaction to the injections (shortness of breath) I had to give myself to boost white blood cells. I have been advised to stop taking these now. Only took 2.
They found out through blood tests that I am Vitamin D deficient (now on supplements) and my HB levels have dropped but not enough to warrant a transfusion.
I am 46, My husband left me almost 2 years ago and I have two girls aged 8 and 12. I have a fabulous support network though.
Any advice that anyone can give would be much much appreciated to help me deal with what's going on at the moment and more info on life expectancy xx
Stresshead, Yes, I'm on ibrance. I will finish my 2nd cycle if this next week. I will have a scan in Oct. My problem is what they call ground glass opacity in my lungs now. I have had it for 18 months. They aren't sure what us exactly causing it. It can be caused by lymphatic spread which is what they are watching.Lymphatic spread has a very bad prognisis. The I branched is given at first in 125 mg once a day for 21 days. It is quite pricey. It is about $10,000 dollars. It is given with letrozole. They say letrozole works for about 10 months alone and with ibrance added about 20 months. You are supposed to be post menopausal, ER+, and HER2-. I haven't had any SE's from it. Many complain if extreme tiredness. Many have low white blood counts and platelets and have had to have their dose reduced. I have only had my levels checked on the first cycle. I will have them checked this week for the 2nd cycle. I don't have any information on when it will be available in UK. I believe it is made by the drug company called Pfizer here in US. You could go on a site called bcmets.org and ask a lady named Musa what she knows. She seems to have a lot of info on different topics. Hugs! FF
Hi stresshead sorry i dont know much about skin mets but you sound so worried and I know what thats like! can you ring your breast nurse or macmillion and tell how worried you are and they may be able to set your mind at rest a bit about treatments or your brest nurse can ask your onc to explain. The very positive thing is no organs effected thats great! Its the not knowing that does you in, best wishes xxxx
Hello to all you lovely ladies, i hope none of you are suffering too much at the moment. Just a brief update (full story under cutaneous mets thread on treatments board).
Saw my onc on Thursady (for the first time in 10 weeks!!) who told me my scan pictures looked like my organs were still clear..for the moment...although the written report wasnt back. this piece of good news was then overshadowed when he examnied my skin mets. I have had 6 cycles of erubilin and i knew after 3 it wasnt working. He was shocked at how quickly the mets had spread and his whole demeanour changed. I had been expecting to go onto the e/e combo as chemos just aren't working but then he told me that my biopsies inapril had sheon some of the mets to be triple negative. I have (and as far as i know my GP) always been told i am er+, her2-. No one thought i should be made aware of this!! it hasnt affected my treatment with chemo's up till now but it has significantly reduced my options with hormonal and biological treatments still left to try.
I have now been put onto weekly taxol (no mention of gem carb) but i could tell no one is expecting this to work either. As you can imagine this has knocked us all sideways...one day we think there are several options, the next we're given the impression that there's very little hope. My daughter even wants me to move to America so i can get Ibrance!! ( funnyface, am i right in thinking you are on this?...maybe you have more updated info on when it is likely to be licenced here??)
I have never eally done any research into treatments for triple neg so thought you may be able to help..any info/advice would be most welcome. cant uite see how i can have to lots of stuff at same time though, one to try and kill the er+ and one for the er-???
At desperation point again...wouldnt we all just love a break? Can't think of more deserving people.
Thank you for listening. Love and higs to all. x
Janet have a look at Argos and others as well as mobility suppliers. I have heart failure due to chemo damage and know my limits walking wise. If you are intending a chair for streets, pavements you'll need something more substantial, wheel wise, than a lightweight for shopping malls, occasional use. Have a good time. X
Morning Everyone. Hope things are not too bad for you all. Haven't been on site for a little while so need to catch up. I'm slowly feeling better had zometa and then blood transfusion this week am starting to feel a little better. Now having zomorph as well, at the moment have another groin strain so struggling to walk, on ibuprofen for that. We are going to our son's near London next week and have been told I can go and should go so starting to get excited now. What I wanted to ask is haven't need a wheelchair up to now but could do with a travel one for next week. Can anyone recommend a good one for comfort and lightness. Don't mind if it's to hire or buy. xJanetx
Hi everyone hope ypu are all doing ok x well its my daughter's 40th birthday soon so took the bull by the horns and booked a family holiday to a villa in Menorca. It's in 3 weeks time so hopeful the cancer gods will let me go ! Shocked when tried to get insurance 7 days in Europe one quote 2300 pounds! Went with insurewith , it was 54 pounds so recommend them to everyone. First cycle of cape on second week now not bad will the side effects build up for 2nd cycle? Still have pain from my wisdom tooth extraction but hoping this will receed by holiday....we don't ask for much do we xx
Red, My vinorelbine was infusion, I didn't have any "loo" issues.I wonder if I was just lucky or if oral vinorelbine might cause these tummy problems. My insurance at the time wouldn't pay for oral chemo.
Evening ladies, I'm sorry I've been absent for so long. I've read the thread through- gosh there was so much to catch up with and of course a big welcome to all the newbie's. I'm going to ease my way back in again. In the meantime huge hugs to all you lovely ladies. What a wonderful community we are.
lots of love,
Last night I took my first dose of Vinorelbine and I have to say I am quite surprised that I am feeling ok. I was on the loo for half the night with raging diarrhoea and I did feel a little nauseous but ondanzetron sorted that out. I felt washed out and tired this morning but by the afternoon I felt much better. Nothing compared to FEC and Taxotere. I just hope it does the job.
Hi Edwina, this will take you to the Capecitabine thread,
My side effects took 3 plus cycles to kick in but recommend moisturising feet and hands from the start of chemo. Never had a sore mouth with this chemo. Tablets are slower to show they're working than IV so think it took 2 or 3 cycles to show my chemo was working. My tips, always leave at least ten hours between the two lots of daily tablets and always take with at least good sized snack, a bowl of cereal if you have no appetite. Good Luck. X
Hi everyone...not sure how to get to the treatment page but wanted to ask..l have just started cape 1 week now . I wondered if any one knows how long before a. Thde side effects kick in(not had sore hands and feet yet or sore mouth) and b. When shoukd it start working ad still have pain from lymph node under my arm think its pumping cancer around my body! My daughter is 40 in oct and we are supposed to be booking a family holiday to celebrate but worried i will end up not being able to go. its only a few werks away but worried i will spoil it for everyone.
Thanks for this post funnyface. I'm about to start Vinorelbine so this helps to ease my mind a bit. Were you on Herceptin aswell? Red
Hi Stresshead - Gem Carbo worked well for me and I found it the easiest chemo I've had; I felt really well on it. Although I had a reduced dose after the first cycle, plus lots of delays and missed half the day 8 Gem, I was NED for about 3-4 months. The one thing I would say if you're going to have it is to ask your onc to give you the blood cell boosting injections from the first cycle because it really hammers your bloods and that's why I ended up with delays and cancellations. If I'd had Neulasta after the first day 8 I might have kept on track, which may have then stopped progression for longer.
Best of luck.
Stresshead, Have you had vinorelbine (navelbine) worked well for me for my lung mets. I got 5 years out of it. It was very tolerable. FF