Thank you to Angelmum72,moijan,marie123,natalie1,andrea and everybody that has replied to my post and given me hope. yes you are quite right we need time to let things settle.we have had a terrible year as we are dairy farmers and struggling with milk prices and everything else, now the shock of secondaries has put the tin hat on it. you are right i will feel better when a treatment plan is in place. at the moment i have no pain which is good as i can still run my holiday cottage(attached to farm house) which i do all the cleaning for . it also takes my mine of the cancer for a while.sorry i seem to be going on a bit but just cant thank everyone enough. love and big hugs to you all.
First of all a very big smile and a happy hug for you artygirl. I'm so very pleased to hear your good news. I'm glad you found support here when you needed it and I wish you all the very best for the future x
Welcome to all the new ladies, sorry you are eligable for membership of this group but pleased you have found it and hope you will find support here and not feel so alone and that our stories will help you feel a little less scared. Most importantly that you can see and believe there is HOPE.
Re Zometa/Denosumab. Zometa was the 'gold standard' treatment when I started it 6 years ago, the other oral bisphosphonates weren't very popular as you had to take them and then remain upright without food for at least an hour....Zometa can interfer with kidneys so they do the blood tests to keep an eye on it, it can also cause osteonecrosis in the jaw (ONJ) BUT it not only strengthens your bones to help protect attack from the cancer there is some evidence it may also fight the cancer in some small way too. Denosumab does the same job as Zometa but in a slightly different way, it is kinder on the kidneys but can still cause ONJ and some people have breathing issues as a SE. The Zometa is cheaper but takes more time to administer so cost wise they probably even out. I could have gone onto Denosumab but chose to stick with Zometa as it's working for me so why mess with it and also I have a port which would still need flushing every 4 weeks ....I do find that I get more tired and achy just before and just after treatment, it migh be the same with the Denosomab.
Daisyjane, I get my latest scan results on Monday too so we can hold each others hands virtually. The Tamoxifen should start to kick in in about 8 weeks so hopefully your scan will show this. It works for different lengths of time for everyone but it can work for years so fingers crossed that's what it will do for you.
Think I better stop before I write a book! Have as good a weekend as possible girls xx
Hi Carolyn 52,
I have just noticed , that you mention you get pain after the Denosomab injections, I have only had two and so far no pain, Is this something that will develop along the treatment. I have bone mets in several places , but the only one I get pain with is the one in my hip , pain in groin so makes walking hard . I also have Fulvesterant , 3 so far and no side effects, as I am thinking of going back to work , your input would be helpful , I dont want to go bounding in , like the Dulux dog , then have to go on sick again,
keep well xx
Brilliant news, Artygirl! Sorry I'm so late to the congratulations! That is wonderful news.
Good Morning Ladies
I haven't posted for a little while but have just come back from holiday in Devon - beautiful place, terrible weather unfortunately but hey that's holidaying in the UK!
Anyway, I was diagnosed with the double whammy of lobular breast cancer and extensive bone mets back in May 2016. Since then I have been on Ibandronic acid (bisphosphonates), Zoladex injections and tamoxifen. I am due to go back on Monday to have a CT scan with the follow up meeting with the Oncologist.
I have to say the anxiety levels are starting to rise. Can anybody offer me some words of encouragement? I don't now whether they will see any difference in just under three months of medication. Does anyone know how fast Tamoxifen works or how long you have to take it before it fully gets into your system. Also I read somewhere that the Ibandronic acid takes a minimum of six months before its benefits start to show.
Sending positive vibes out to everyone. Tiger14 and Skippy I have tried to private message you but no luck. I hope you are both doing OK.
Hi Andrea, I use to have my injections on different weeks and which drove me mad so on another mition to "take control" of this disease I spoke to my onc about getting them on the same day each month, I now have them every 4th Friday, that way they are both out of the way for a month.
Hi Helen, glad you had a good holiday, sounds like you had fun!!
Hugs Janette xxxx
Welcome to the new ladies, but sorry you have had to join us. You will find lots of very helpful people all over this Forum. Take advantage, and ask as many questions you need to.
Carolyn - good luck with the new garden furniture delivery. Good old hubby, putting it together for you! Say hello for me!
Hi Sarah, sorry you have had to join us. Understandably your in a scary place at the moment take time to take it all in and be gentle on yourself, once a treatment plan is in place for you things will settle down. My secondary dx was March 2014 and I totally wrote myself off! I have mets in my hips ribs and spine and at the moment I'm stable and living a relatively "normal" life still working part time and booking hols etc.
Hugs Janette xxxx
Sorry you have had to join us. It is very raw and scary at first, but it does get better. Once a treatment plan is put in place you will start to feel more in control. I am three years on since the double whammy of SBC, and there are ladies on here who have been dealing with this for many years.
Be gentle with yourself, write your questions down for the onc. Scream , cry when you need to , you don't have to be a saint.
You will find the 'New You '.
Hugs Marie xxx
Thought id also post this as it may give us all a bit of cheer. When i saw my onc on Wed, i mentioned 'liquid biopsies ' which he explained are actually blood samples from which an attempt is made to classify cancer cells within the circulating blood. I asked about this because I had heard about it on the Inspire website.
My onc had, at a previous appt explained that they thought my ca had changed its DNA(letrozole no longer worked, whilst id had a brilliant response some years earlier) so this week, I wanted to know if i was still oestrogen pos.
the onc said on Wed there was a trial being considered soon which would be looking at precisely that and I would be eligble for it, but that the planners were still trying to find the money.
apparently they hope to be able to look at the subsequent dna changes that happen and to then be able to target these and even eventually maybe predict which changes will happen so they can target those also.
if this approach works then ethically, the NHS will have to make it available all over the UK, as I suspect it will soon be in the USA....as they seem to be trialling it already!
THis appears to be a radical new way of looking at cancer which could make great inroads into treatments, because I had already heard that ca cells metabolism uses specific proteins in order to grow and spread. Seems this new method could perhaps lead to them nipping these in the bud? As well as forgo the need for tissue biopsies, which of course are painful and traumatic and cannot always be done...some mets are far too small to be seen.
i think CANCER RESEARCH UK .is a good place to watch, for these new trials hopefully to be emerging shortly.
love and hugs
Hi Sarah, sorry you have been through such a traumatic time. Just wanted to tell you that I was diagnosed in 2001 with lobular oestrogen pos bc. Had a mastec - lymph nodes 12out of 13 were positive and my margin was less than the millimetre they like...in fact the bc had spread out of the nodes...into the fatty tissue under the armpit. All scary stuff I know, but now im 15 years on, albeit with secondaries in my liver and spine.
i do hope that helps...I know it feels like the end...I retired because they said there was a 75% chance of secondaries within two years and I was just as scared as you probably are.
i like to think I live a normal life and in fact things do feel normal, apart fom all the hospital visits!
take heart, try to enjoy the little things if you can...I havent children, but my great neices are a distraction!
love and hugs, Moijan💜💛💚💙
oh and Carolyn...I have been eating chocolate today, 90% cocoa🍫🍫🍫🍫🍫🍫🍫
Hi im new to this site and looking for some support. I have read through some of these post and have been uplifted.I am 45yrs old and was diagnosed in may16 with IDC two lumps removed with immediate therapeutic mammoplasty.Went for results of op to be told no clear margins and both tumours were bigger than first thought and out of 5 nodes i had a speck in one. due to this i was given bone scan& ct scan then second op for clear margins. results of second op were clear margins and clear bone scan but ct scan showed something in the sacrum,then i had mri scan and they were still not sure so a pet scan followed. went to see oncologist for results to be told that i have secondary breast cancer a single 2cm spot in the sacrum but the rest of the body was clear at moment. it has left me and hubby blown away not to mention my 3 kids 14,12,& 9 . I have been put on tamoxifen because er+ and my oncologist is going to find out where i can have targeted rads. I will also have monthly injections of denosumab,no chemo yet.I was wondering if anybody else has started with one single met in this area. we are terrifed about the future and would love some support.
So sorry to hear you have progression and also that I can't remember if you already had liver mets or whether your bone mets have now spread to the liver. My bone mets spread to my liver after 5 years on hormone treatment. I insisted on a liver biopsy, having read on this forum about receptor status changes. I'm glad I did as my HER2 status showed as having changed from nearly 10 years of being negative to now being positive. This has given me different treatments available which I wouldn't have been able to if I hadn't had the biopsy done. I would suggest that you contact your oncologists secretary saying that you need an appointment earlier than the scheduled one on 16th as its too long to wait for a change in treatment as far as you're concerned. I know it's holiday season and that all the consultants in our hospital seem to take August off (grrrrrrrr!) but hopefully your appointment can be moved forward. Ask if a biopsy can be done.
If however you have had one done already I'm assuming it wouldn't have been too long ago therefore the results would probably be the same as current in terms of receptor status. In either case your oncologist should be able to put you onto another type of chemo, having seen from your postings that the hormone treatment hasn't been effective. Also it may be worth asking for a second opinion and travel to the nearest specialist cancer hospital. I'm in the south so I have been to The Marsden twice for second opinions but I know of The Christie further north and think that Sheffield has a specialist centre if you are closer to there. Your oncologist won't like it (mine was very huffy about it!) but you are entitled to it and it could open up other treatment options or even being considered for a trial of newer drugs or combination of drugs that aren't available locally.
Hope some of this info helps and sending lots of hugs your way as its a bummer when we get progression.
Hi Sharon, sorry to hear about your results, can't really offer any advice on liver mets though. I know it's a few weeks off until you see your onc (which is rubbish!!) I'm the same I usually have to wait around 4 wks it's ridiculous! But I would think he/she will have a treatment plan ready for you to start on.
Stay strong sending you a big fat cyber ((((hug))))
OH Sharon, It's so scary and disappointing when there is progression. I would think you should have more treatments, after reading your list! Hang in there and give your oncologist a call if you are worried. You shouldn't have to wait. Hugs! FF
Hi Sharon, so sorry to hear your news. I wonder when your last status check was. Is there a possibility your cancer type has changed. If you haven't had it done for a while an option might be to ask for another biopsy to see as if it has changed the chemos won't make any difference.
much love to you xxx