Hi Littlelis83, I think you must be the same Lisa that I've messaged on YBCN (I'm Joanna C). I'm also newly diagnosed with mets and 33. I know exactly how you must be feeling, big big hugs xx
Hi Nicky, just wanted to throw in a comment re Zometa/Zoledronic acid! Am now on it three monthly
so it really is less of a tie than the alternativr....apparently research shows its just as effctive...but you need to build up to it.
Yes Barton, I agree the painkillers mess my tummy up and i'm already on Omeprozole. I hate taking pills and like Carolyn i try ro keep walking. I think ttats what has happened - I've donr too much whilst I've been away. Finding it all very frustrating but I will find a way to deal with it.
My doctor did offer liquid morphine and I didn't want it because I've reacted badly to morphine in the past. Didn't realise I could use it as an emergency for bad days, Crissy.
I will go to pound shop and try the heat pads. I have used the deep heat at times but never sure whether to put it on the painful leg or on the back where the pain originates. Need to see orphopedic consultant soon.
Brightening up a bit here. Emjoy your weekends. I'm busy writing reports.
All this talk of painkillers - can I just say, ladies and gentlemen - please remember that a lot of them can cause constipation! I know, from personal experience! This can make any pain you are in worse.
Welcome to the "newbies" - not that you want to be here, and, of course, in the nicest possible way, we would rather you weren't joining us too (for your benefit)!
Hugs and best wishes to all. Barton.x
My onc gave me a bottle of liquid morphine solution to use when the co-codamol didn't take the pain away in my hip and lower back. It does help, just a 5ml spoonful every few days or so when the pain gets me down.
I cannot believe how many of you out there, at such a young age, are going thru this awful, cruel disease.
I had my primary in 2013 and secondrary March this year and I am 68. I don't think I could have coped if It had been 20-30 years earlier. My heart breaks for you having to go thru all this in the prime of your lives. Stay strong and positive.
Lots of love to you all, have a great weekend xxx
Hi Lisa, welcome to the forum. Its a big shock and you are very young but as a newbie myself I can tell you that the ladies (and men) on here will help and support you as much as they can. Hugs xx
Good morning Ladybird, I seem to be the same as you. I have been told my leg pain is because of the slipped disc and not the secondary breast cancer they found as a result of slipped disc. Very disappointed that I have still not received an appointment for orphopedic consultant. We have been away and I fully expected to find an appointment letter.
Instead I received yet another letter from breast consultant, which is stressing me out. It says diagnosis ?bone metastasis, Then further down it says It APPEARS to be breast cancer metastasis. She seems to think that as its been a long time between primary and secondary, this needs confirming.
The problem is that I'm in a lot of pain with my leg. can only walk a for a few minutes and whereas before, the pain stopped as I rested, it doesn't stop as quickly now. Doctor gave me paracetomol and CoCodomol. I've also been taking Ibuprofen bought from the chemist. But to be honest its not touching the pain. I don't take the cocodomol because they were making me sick and was constantly asleep. I don't want to be lying on the settee all the time and am looking for ways to cope. My car is automatic and I sit down to prepare food and iron but have difficulty doing anything else that requires standing. Going to buy a stool for the shower. Has anybody any more suggestions to help please? Back at work on Tuesday and not happy that I've become as "sitting down" teacher!
Jellytot - I had Zolodex injections for two years and when my periods came back again at the age of 54, for another two years. The first few made me very emotional but I didn't find the actual injection that painful. A friend of mine who has them for Prostrate told me to ask doctor for prescription for anaesthetic cream to apply an hour before. Sorry cant remember the name. The other thing I'm wondering about is harvesting your eggs. When our 26 year old neice had ovarian cancer, they harvested her eggs before she started chemo. She has since been told that because she had bracatherapy (internal radiotherapy) that she wont be able to carry a child but has the option of a surrogate mother using her eggs. Is that a possibility for you? I know this must be a terible time for you - our Laura is a nursery teacher so it made it hard for her to work with children as well. She too became an aunty during her treatment and her and her husband spend many happy times with their nephew. I think I agree with the other ladies, take your time before making a deision and explore all the options. Your oncology team seem to pulling out all the stops with your treatment so thats good.
Hi jelly tot. I was away for a short break when you first posted so haven't managed to add anything yet to all the advice and aupport you've been given but have read your 'story'. I time of huge changes and decisions for you which, as Carolyn has already said, must be making your mind explode!
Although your onc has suggested an oomphorectomy (?sp) it is a big step to take so there's no reason to take it immediately. Can you not start on the zoladex injections and then as and when you decide to, have the op later, especially if you have a period of stability? I think all the newer treatments that are being added to hormone treatments do 'allow' you to be on zoladex if you are post menopausal rather than having to have had your ovaries removed. As the drug you mentioned, ribociclib, is so new I'm assuming you will be on a trial, or will need to fit the trial conditions that the companies who make these newer drugs, and are currently offering them to the NHS for free, have. I know how strict the conditions are to be on a trial so you may have to check with your onc on this. By not having the op immediately it would give you a chance to mourn the fact you won't be able to get pregnant and, who knows, in a year or so maybe advances would have been made to enable this possibility? It should be your choice so it's definitely worth talking to your onc, husband and everyone else you want to, to get a clear view of what you want to do. I had zoladex back in 2003 after my primary (I was 41 at the time and pre menopausal) and had the injections for 2 years. In the scheme of things that's not a long time to have a monthly injection but is time to allow you to decide what you want to do. Btw, afterwards, when my secondaries were diagnosed (2008) I did choose to have my ovaries ablated as I couldn't at the time have a general anaesthetic to allow the actual operation.
As to having Vit D and calcium this is standard practice when having Denosumab, bone strengthening injections, but I haven't heard of it with zoldronic acid. The reason it's given (it's one tablet) is that Denosumab takes calcium from our own blood supply so a supplement is usually needed however zoldronic acid works in a totally different way so it may be worth checking why you're having it especially if you don't need it - one less thing to take! Also, is there any reason why you are having zoldronic acid rather than Denosumab? Just a thought as it will tie you up to going into hospital every 3 weeks (I think) and having an IV whereas the hormone treatment being proposed is tablets as far as I know so you wouldn't need an IV for that and it would save you time when you don't need to be in a hospital.
Hope this hasn't confused you more or made your decision making any more difficult but it's worth stepping back from everything for a bit before making such big decisions and, as you've said, you only found out 2 weeks ago! There's a lot to learn and it's so easy just to go along with what you've been told to have as a treatment option because that's what most of us do when we have a primary diagnosis. A secondary diagnosis is a different ball game with lots of options and generally a bit of breathing space can be a good thing, even if you end up having the original treatment plan.
Hope you recover from the rads, and above al enjoy the weekend with your husband, the sun is shining where I am, hope it is where you are.
Hi Jellytot, I just did 21 months of palbociclib. I talked to my Onc about ribocilib. She said no not now bc they are really the same just different manufactures. She said she would prescribe it if it starts showing that it worked after palociclib, but for now thought I needed to move on. Good luck!
special hello to aunty Jellytots!!! ❤️I know it must be hard but just enjoy being a super spoiling aunty. Nieces/nephews are such a wonderful gift and I'm sure you'll get to have wonderful adventures with him. Also, my onc mentioned the 'new kid on the block' as Caroline put it. Think FF had mentioned it and it's supposed to be really good. As for the op, can't offer any advice although I've had 4 zoladex injections and think that by the end of the year will be fed up... it's goung every 3wkd and although I haven't had major side effects more than flushes, when they inject it it really hurts even after having some numbing gel/spray.
sooo... I've left the '30's brigade and joined ranks with the '40s now!!! 😱😱 had a fab time in Paris and took the girls to Disney so (as I told my husband) can die haooy now. 😉 He on the other hand is not sure about being left with 2 teenage girls!!! Anyway, had CT scan before the holiday and in the next couple of weeks bone. And seeing onc in july for results.... major panic moments but over all ok...
right off to enjoy he snshine. Xxxxxx
Hello Ladies, I met with my medical oncologist on Thursday afternoon and she has suggested I have an oopherectomy. I have to admit it knocked me for six as I had been expecting her to offer me zoladex. I have been thinking lots overnight and although I'm only 33, as kids are off the table, I guess why wouldn't I have one rather than have yet another drug in my system every 3 weeks. Still a bit of a shock! Everything is moving at such pace, I was only diagnosed a fortnight ago!
Secondly they are seeing if I am eligible for a new drug called ribociclib to be taken at the same time as letrozole and I should find out about that early next week.
Thirdly they will want me to take VitD and calcium supplements as well as zoladronic acid.
So much to take in! Am just looking for advice really if anyone has had/is having any of the above.
rads are going ok, my hip had me in tears two nights ago but is feeling "betterer" today
Proton beam therapy is the treatment that some parents removed their son from hospital and took him to the Czech republic for. The authorities in this country tried to stop them but as far as I can remember he is better.
Very impressed, Carolyn! Thanks for saving us all the trouble of Googling it!
Jellytot - glad your first lot of rads is out of the way. Good luck with the temporary residual pain (that Carolyn warned you about), and good luck with the Daily rads to your chest. Congratulations on being an Aunty (a painful thing for you, I know).
Hugs to all. Barton.x
here s a link to EFT demo
I confess I had a few sessions with a trained practitioner..but actually, you dont need that...its all in the demo...and then if you keep at it...things do improve....
good for acheivng goals
working on pain etc
see what you think and then decide on your choices. Xx
obviously its not a cancer cure...but it helps me to. Cope with the bc
And so it begins! Just had my first rads, the one off blast on my hip. My knee is throbbing because I think it's overcompensating for my hip. I'm feeling emotionally drained. Tomorrow I start my 4 weeks every weekday of rads to my chest. Meeting with medical oncologist on Thursday to discuss hormone therapy and potential chemo.
In other news, I'm now an auntie. My brother had his first on Sunday, I'm feeling a bit numb about it tbh. I don't feel happy, nor do I feel bitter. I think my brain has gone into self-preservation mode....
Hi Dragoncarine, Welcome to our thread. I was only diagnosed with secondaries a few weeks ago. Not prepared as I was about to be discharged after 10 years. But, it is what it is and needs dealing with. The ladies on here have a wealth of knowledge and in some cases many years experience. Once, you settle on to a treatment plan, things will seem better and we are alll here with cyber hugs, to listen to your worries. One thing I would suggest is to make sure you take someone with you to see the consultant to take notes. Much love xx
Welcome, dragoncarine (would you prefer dragon or carine as the shorter name to type?), but sorry you have had to join us. You have come to the right place for friendship, humour, and as much advice as we can give!
You have been hit with a tremendous amount of information, and it takes a while for it all to sink in. Please read back over a few pages, and you will find that other "newbies" have found comfort in the fact that once you have a treatment plan in place you will feel much better (difficult to believe at the moment, I know). There are ladies on here who have lived full and happy lives since their diagnosis, and some for many years on maintenance treatments.
Please let us know how you are getting on.
I'm new to all this, still struggling to come to grips with it all. I'm not sure what to expect. Bone scan & CT scan showed up tumours on ribs, right shoulder and left upper arm, I think they said lumps on my skull may be cancerous too, but I can't remember. They also found areas on my lung and I believe tehy also said a couple of suspicious spots on my liver. I asked for report but in all the chaos forgot to ask again before I left. Have been put on Tamoxifen and starting Denosumab in a couple of weeks I think.
Prob talking too much her...but sat in Waterstones and read quite a bit of 'the Cancer whisperer' by Sophie Sabbage....was quite enlightening....that lady ended up with 27 brain mets I think she was a lungs primary lady who like us went through hoops with meds, she ...took charge of her care and they ( tumours)seemed to have gone.... Worth a readxx
also...have been wearing a fringe on a hairband from 'Heathers Hair' under my elasticated headscarf...looks quite real and much less hot than wigs....they are amazing at Heathers Hair
Pippin, yes, im sorry you have had the worry of another lump.
i hope it proves to be non cancerous.....You reminded me that I was doing my EFT last night to try and sleep......was tapping on the collar bone point on the side of the remainng breast and became aware of a line of tiny lumps nearby...could be defunct milk ducts, never found them before...but not that good at checking as have 9/52 MRIs....am not worrying, but that area is now sore from tapping!
i also had a tiny lump in my ear cartilage and two lumps( which look like ladybirds) in my umbilicus.....both gp and onc made nothing of them and the ear one has almost gone!
its a weird trip we are on, eh?
Yes, hi to you too chocolates....seem to recall you posting since last year..and then hadnt seen you, but this is a big forum. I actually joined the forum in about 2002/3, but fell away and lost my log in and the had to re register last year again! Im a bit of a llong timer in that I found mt lump in 2001...... Actually was concerned about an abnormal crease in that breast in 2000, but was sent home with a letter i still have sqying "you will be pleased to hear, etc" when I fond the huge lump, the consultant lost his temper as I asked wether it would have been there the year before! Eventually changed as the man had lost his appeal. So had a large lobular bc, tumour...pre op chemo, mastectomy, rads,12/13 lymph nodes positive so full clearance and more chemo and rads to armpit also have lymphoedema.
went onto Letrozole for 7 years..told I could stop, apparently 3/4 cancer free years...then recurrence to bones and liver. In about 2013...... Now on the gravy train like most of us.......am on fourth chemo drug. - waiting to see what scans say as ? Progression.
anyway, it is nice to hear from ou Chocolatesxxx
Pippin, I'm sorry to hear of your new finding especially on a long weekend. What treatment are you on? Have you been on it long? I think my need to get away from cancer is partly how this drug is making My head feel! Not sure if it's the targeted drug or the hormonal. I feel alone on them and they also make me to be alone. Trying to force myself not to hibernate! I have to fight this bc I want to get my time out of this drug! I want more years! Like all of us a do! All of these years living with a black shadow over my head has become tiring! FF
I went for a 30min nap about 7pm and woke up just now! No even sure what day it is.
FF I understand how you want to get away from this cancer thing. I was beginning to tnink like that too. I occurred to me that I might have another 15 years and that thought was strangly scary. However at the beginning of this bank holiday weekend I found a new lump (not looking for it, it was just visible under my arm, - such timing!). Guess I'm back in the system on Tues. We'll see.
Hello Chocolates, Good to see you popping in and to know you are rolling along with this! Lol you can call me an old timer. I am one for being here so long and by age, also because of the creams, cracks, and groans when I move! Take care of you! Anything new or adventurous going on? FF
So nice to hear from you ...its been ages since we heard from you and its good that you are still well ...don't leave it so long next time before you pop in again.
Oh dear Nathali, my car was shiny newish and a bit boxy, but I liked it the way it was....not minus a wing mirror and with added adjusments to its shape! Could have done without it.
ladies, I reported it on 101 but thought more afterwards...Was it Crissy who said no claims wont be affected...sorry, but they always raise the charge and youd never know why. i know a really lovely, efficient panel beater who has quoted less than £1000 to me...but the first thing he said to me was...'oh, you couldnt have picked a worse colour ....and I knew because id ordered the car...and knew all about the different levels or layers of paint if this happened...and i said so to The dealers...but they said..oh, no, just quote the number...and I actually told them that it would be a problem...but decided to take it anyway...
well..its a problem..but what the hell, I can just about afford it now...but the bggr who did it...I missed his number plate as he sped off and i'd pulled into a lay by thinking hed stop -ba*t*rd....that he was.
the other thing I will say is that most of the chemos we are on - and also post rads.....its a bit risky to be in sun too much....I'm careful.
I too suffer from 'magnum' addiction but am fighting that one, as I told my wonderful onc id try and have less sugar...and ladies...did you read the articles re alcohol for bc persons...this week?
apparently 1 glass of wine daily can up your recurrence risk by 15% and if you are already recurrent....by more. i just know many of you wont like it being mentioned, ( i had two glasses at church last week) but
i do think alc might add to the sugar load ..........anyway, you all know I care about all of us.......so do what you like X But be aware!
much love and hugs
its lovely to see some long timers(nearly wrote old!) still on here mixed in with some I don't recognise but that's because I've not been on for ages. How are we all doing?
im doing ok - day by day - a few set backs but still working and keeping busy. Just wanted to let you know that although I'm not on very often now I still think of you all on a daily basis.
Well, The predictive text sure gave every one a gigle or two, including me!
I enjoyed a Magnum ice cream when we were in vacation, and a Klondike bar, and a chocolate chip cookie ice cream sandwich with m & m 's on it, and ......! I was a bad one!! I just don't buy that stuff because it would drive me crazy! I'm still working on this weight. I have made the halfway mark of what I think I want to lose. If I accomplish this it will be 110 pounds off! I actually lost a lot of weight back in 2011-2012 changed meds, gained it all back except 20 lbs. So from my heaviest I would have 130 off when finished. Losing the next half will depend on my skin looks. I can't afford surgery to fix my skin.
The drop reminds me of a Hershey Kiss! Big chocolate attack going on! Luckily no chocolate in the house! FF