Breast Cancer Now Forum

I know this is so childish, but I have all the Harry Potter books! So I read those over again. I also like Lee Child....his books are really difficult to put down! Moijan ... View more

Hi Smartie, loads of love to you. I know being in hospital often depresses me, feels powerless. try to use your mind to gain some power, I try to meditate, even taking long deep breaths and counting them up to 10 again and again seems to help me.   let us know how you are.xxxxMoijan 💙 💚 💜 ... View more

Hi ladies,   i was thinking back to when I was diagnosed with b.c. In 2001........ They took 13 lymph nodes out...12 were cancerous and the cancer had grown outside the nodes into the fatty underarm tissue. I also had less than 1mm clearance. I remember being told I had a 1 out of 4 chance of the cancer NOT returning within 2 years.!   needless to say, that freaked me out and I began searching to find people who had had so many involved lymph nodes and were still with us......surprisingly, I found quite a few ladies who were in that position!   i myself retired at 52, thinking I'd be gone in 6 months! I had opted for extra (post op) taxotere and opted for underarm radiotherapy. i ended up with lymphoedema in that arm after an infection. However, today, 15 years + later, here I am....still going. I was pleasantly surpised that I coped with discovering I had secondaries 12 + years later!         The message I am trying to leave you with, is that there are lots of us who are still around many years later. you just need to get through your current treatment and then travel hope-fully!   best of luck to all of youxxxxMoijanx ... View more

yes, Happy Birthday Tomboy 💙 💚 💖 💗 💓 ... View more

Hi Debs, i had pre op chemo in 2001, plus post op chemo that year by choice as most of my L/N were affected. my cancer is strongly oestrogen positive. And so after that I was put on letrozole, but at that time, I didnt have Liver mets.   after quite a few years on letrozole, my cons told me that I could stop as it was a new drug and they had no way of knowing what long term effects on the brain would be. So I stopped and the cancer came back....into my Liver and spine.   Now looking at yourself..from what you have shared, you have liver mets. My guess is that you are starting chemo because 'they' are keen to halt the bu**er in its tracks before it spreads further. like these ladies, I went onto chemo after it went to my liver...   after the capecitabine failed, i asked to try Letrozole again- they let me, but it didnt work. i went onto Vinoralbine and that didnt work either.   chemo is stronger and hopefully this will stop further spread for you and reduce any current lesions. I was 52 when diagnosed and am now 67...... And am just about to start my second cycle of Eribulin (chemo) because they say that is the next drug I am currently eligible for.   We are all different and the best thing you can do is to write all your questions down( I just hand over my ipad!) and ask them to elaborate/explain.....if that is what you want to do. lots of ladies dont want to know, but you sound as if you do.   i am having to re-explore my tips for myself. I can list some things here for you, but depending on the chemo, you may not need them all.   I used to take a flask of chopped fruit to work ( when I was working through my first chemo's) so I could nibble when hungry. Eat small frequent meals. i carry anti sickness and anti diarhoea tabs, paracetamol, and canesten cream, .e45, femfresh wipes and spare knickers arounvd with me if im out /away from home for any length of time and im not sure yet about how I will be feeling on this chemo, so I got a friend to drive me last time to/from the hospital. I still have my old wigs, but am seeing the appliances lady to get a new one, asap.    I have bad veins so drink 1.5 litres prior to blood tests and Treatment.( I only have one avail arm as have lymphoedema) the other ladies may be able to point you towards a thread where a lovely chemo shopping list is helpfully set out...I just looked for it for you but cant find it....I noted down a few things from it tho; like finding small handy packets of tasty foods, such as cottage cheese, dry Crackers, boiled sweets( I found some sugar free in Tesco, sweetened with Steviol) eg not large quantites as they fould get wasted.   also, for cracked red fingers, I dicovered 'Udderley Smooth' cream, very good but expensive and hard to source. I carry plasters around too. My nails have split and are a source of infection, so im trying to keep them short as poss.   i hope things go well for you, do keep us posted. I, like Carolyn said, feel I dont want to go through it again and im pretty scared as im now older...but I also feel priviledged as I am( currently) still here and some others arent...so  I  feel I owe it to them to make the best of what I have......   we are living in an interesting time period, hopefully al, will be revealed soon as they are making inroads into cancer.   love and hugs, Moijan ... View more

Yes Carolyn, So glad you mentioned that, I have heard of people going into a hospice every now and then to get their meds sorted or get a quick health boost, then returning to their home again...I think thats where Hospices come into their own. Xxxx Moijan ... View more

Hi Smartie, lovely to hear from you and that you are comfortable and relaxed. I think complementary therapies are great for restoring some life balance, taking time to 'smell the roses' too. lots of love, keep in touch.   Moijanxxx ... View more

Hi Tomboy, really lovely to hear from you. I kept checking back, hoping you let us know how things are for you and I messaged you too!. And im  overjoyed that you are somewhere that you like....sounds as if they are looking after you well.    Are there any groups where you are....groups have a great record for extending our lives...not just saying that...the Simondsons in USA found this to be so....look them up. At any rate, its helpful to meet up with others all in the same canoe!   I realise we have to have a measure of acceptance, but when Doctors say things..it sounds like gospel....and they havent a crystal ball..they mean well, but they arent right all the time.   lots of love, and keep in touch. Moijanxxx ... View more

sorry duplicationxx ... View more

Hello friends. This is my first post on here. I had primary lob bc in 2001, mastec and recon (which went hard quite quickly and caused infection, was later removed.)waslucky to get on to the trial tamoxifen/letrozole after initial chemo, followed by Taxotere( my choice as most of axilliary nodes pos) was on letrozole till about 2010/11, when was told I could come off it. Mets to bone and liver found 2013. Then Cape for 2 yrs, re tried Letro( my request ) this January, cancer resistant, then Vinoralbine for 5 months, now just finished 1st cycle of Eribulin.....enjoying a week off.  - sorry about that, just thought in the interest of self disclosure - you might like to know, will not repeat it again!   i think this group is a great idea. Someone mentioned their difficulties reaching a bcn. I have contact with one at the Marsden, so, I hope the other lady managed to get in contact with one? Seems that the metastases stage patients have a dedicated sp bcn?,  one of them recently came back from sick leave but I always managed to reach one if needed. The other thing I discovered and do take advantage of, but not abuse, is that you can ask the onc sec if you can email her with any urgent  messages/ questions for the onc. Actually, I did this with my ophthalmologist's sec too. But Im careful only to do it if its important. as im sure They wouldnt be able to cope with everyone doing it at once!  We also have a dedicated pharmacy enquiry line.....good but  take a while to get back to you. I have checked out things like juicing, ooc meds etc when I cant find info on the web.   Moijan ... View more

Yes, Truffleshuff, me too. i only have one good arm and have been praying it will see me through this bout of treatment.  One thing I have tried when having scans though, is using a heat pad, the kind you can buy in Boots to stick on your back...I tend to wrap it round a thin t shirt sleeve as it sticks to the skin, but the ct /mri people seem to find it helps.   i also drink copious water aiming for over a litre maybe two and try not to go for a pee, till after im cannulated...one of the nurses recommended that and it seems to work for me...something to do with ? Increased venous pressur maybe.   i am the worlds very worst patient when facing cannulation. But where im treated, they have a rule that each staff member has to hand the patient on after two attempts.. Which makes sense....as the next person usually gets it in first time. i also opt for sinks of hot water for my arm......I always assumed legs are more painful?? ... View more

Hi Tomboy. Yes, good to be nearer your loved ones.   Like everyone else, I too hope the onc is wrong....and they can BE  wrong. A while ago I met a lady at the opd ( where else?) who had been given really bad news and was told to fly home and do exactly what she liked......i met her again 6 months later and said Hi, how are you? And she said oh, all my tumours have shrunk and im feelng great! They are happy with me.   Honestly, no-one knows the future. They have to be frank about what they think.   in your place, I hope I would be able to continue practicing my mindfulness, so as to feel as if I had some control over my thoughts.....thoughts tend to run riot when I get bad news, so I find it hard to stay in the present.......which is all any of us have, really. The one certainty is now.  I think the one thing I learned from having cancer is to make each day count and to do all the things I want to do...now. Im not slways successful, but I try.   I know you will make the right choices for you, you sound a very wise lady. Please keep in touch if you find it helps. Sending you lots of loving thoughts and prayers, Moijanxxx 💜 ... View more

No, nor do I and I have posted quite a few times now.   ... View more

Hi tomboy 81, Reiki, yes, I do believe its powerful stuff. Quite a few years ago now I met a Reiki master in a coffee bar on Scotland. She said she would send me some Reikhi at 6 pm that evening and, you wont believe this, but I had definite unusual tingling in the arm at 6 pm, I was a bit surprised.   Many years after, an old friend was practicing Reikhi on me and whilst he was standing at the foot of the table, i felt a hand on my shoulder!   whilst we are on the  'esoteric' I have read research that showed a group of buddhist monks meditating in an area where there was a lot of violence...the level dropped! i recently heard that people who have others praying for them do better...and I dont think they had to beleive in it, it still works.   there is alot we dont know, or understand.  Getting back to basics, I recall someone saying in this thread Tomboy 81' that the drugs had caused her swelling, similar to your own,  that made sense...so if there is no obvious sign of cancer blocking the flow, that could be a good sign?   and sharon, I too, often get scared, im sure most of us do.......maybe when things feel out of our control?   love and hugs   moijanxx ... View more

Sorry for my late reply, sounds as if you are feeling you have a bit more control over things today, hope things get sorted for you.  I shared that I too get scared, im going for my 2nd Eribulin tomorrow and im feeling powerless about it, people have been occasionally dangerously ill on that drug( or worse) like many of the other drugs. the consent form isnt specific about what can happen and of course, like you,( like everyone) I want to survive... With good quality of life for as long as possible, we are told we have a choice, but what choice do we have? We must rely on our doctors to advise  us   i am going to try to use mindfulness more, to get some control over my thoughts.....im not an expert but want to get better at it. I managed it for a short period and found that worries were more controlable, but it goes again quite easily....needs practice.   I hope your day has been a better one, please keep us updated about how its going. I think the drugs do affect the liver function tests and bilirubin, they couldnt do otherwise, but usually things go back again as the body recovers, I was on Cape for almost 2 years and after the first two months things settled down....well done with the fluids, I must not have been and I was a bit lazy, I got a dvt! Looking back over my bloods, my bilirubuin went up. 4+ times, but not as high as yours, also my Lfts were raised ( they are much worse now tho)   love and hugs, Moijanxx ... View more

Hi Tomboy81.  Sorry you are having a bit of a scare, I havent had that particular scare, but I can certainly identify with the feeling of 'whats happening to me?' I think the others had some helpful ideas/ experiences to offer, I havent really, but do have liver mets,  tiny seeds all over it and one larger met and recently was told its grown a bit, so I know about the uncertainty thingy. Also, im never a good in - patient, always start thinking 'am I going downhill'!   I was thinking that unless they say don't...drinking lots of water will help flush out  any toxins...also ( and im really bad at this) but 'mindfulness' the ' In' meditation is pretty good if you can do it, to get a grip on the 'nagging mind'.    My n/spec recommended a book recently called Mindfulness for health, by Vidyamala Burch, it just arrived from Amazon today,so dont know how good it is yet, tho, there is a downloadable kindle version which is much cheaper I think and that would be immediate...I ordered my book yesterday it has a cd,so when i find my cd player, ill have a listen. ( I just paused typing to have a quick look and she seems to be making a lot of sense) the other thing is..... Try not to get spooked by the doctors tone...... I find myself reacting to tones all the time, but they all have lots of things to do/on their minds and her tone might be irrelevant regarding your situation. If its any help, I had a partial hepatectomy in 2008 and was scared I was going to die! So I have been there. the op was pre mets, but that bit was diseased so it had to come out. let us know how things are going. moijanxx ... View more