I have not been on for a while as been busy with Xmas, work and hospital appts.
Funnyface congratulations on your granddaughter. if I did not congratulate you before.
To all the new ladies I would like to reassure you it does get better once you start treatment. I was straight in at secondary stage following investigation into a pain in my leg so devastated as totally unexpected and told they could not cure me, just treat me for years and now almost a year later I am still here. Something I could not believe when first told.
I have bone mets in hips and spine and I started on tamoxifen which only worked for 5 mths and now on letrozole and ibrance (I too find it easier to call it this) denusomab and zometa. Very little side effects except the joint pain and hot flushes. I have also had 3 separate lots of radiotherapy and recon on my breast following masectomy.
Recently been having pain in leg so back in the scanner yesterday and now waiting results. The pain started before I went on the ibrance so hoping they keep me on it.
This is an awful journey but I find the posts on here really useful and give me hope. I am 51 with 2 grown up children and desparately want to see some grandchildren too
Love to all
Hi Schoomley, I don't have any experience with bone strengtheners. Google for the side effects. I would definitely scroll through the whole list. Sometimes if you just type in a few words "like problems with eyes while taking Zometa" you might get some sites to come up that people had this problem. Btw, You can do this! You're strong! Let's hear your "ROAR"!! FF
Hiya ladies, can I join you?
I was first diagnosed in 2009 with primary bc.4/8 nodes affected, poor prognosis. Hormonal oestrogen 8/8 Prog 5/8 (I think) HER2 neg. I had mastectomey, chemo E-CMF, Radiotherapy and hormonal tablets. Mangaed 4 years on Tamoxifen, 2 on Letroxole and 1 on Exemestane before i'd had enough. (Also had diep reconstruction somewhere along the line)
In December, just before Chrimbo (Thanks God!) I was diadnosed with bone mets, a few in the spine and one pelvis and joy of joys, liver mets also. Multiple sub 1cm spots. They hoped to biospy liver for pathology but undortunately they have not been able to do this due to size. They've put me on Zometa for bones and will also go back on Exemestane. I tolerated this a bit better than Letrozole. I've also signed the paperwork to start Palbocicclib (think i'll just call it Ibrance from now on as it's easier to spell!) but haven't got a date yet. Also forgot to mention that I am going to have a liver mri to have another look in case they see something that they can biopsy. In the meantime they're going to assume same pathology as primary.
I had my first infusion last week and apart from the usual vein nightmare it went in ok BUT i've not been great since. I think i've had every side effect on the list. Nausea, flue like symptoms, strange aches and pains, sore teeth etc but the thing that's affecting me most at the moment is my eyes. I'm having trouble at the computer at work. I do have an opticians appoinment on Sunday to check my eyes anyway. What I would like to know is if anyone had similar symptoms did they have them after every infusion or was the first one worse and also do they subside over the month? am most worried about my eyes. I did tell the oncologist that I would give Zometa one more go in case it was a one off but that was before the eye issues? any advice welcome 🙂 thanks
I wasn't worried before hand about the infusion but i'm not sure I can cope with these side effects as well as any from the future chemo. I am 50 years old with a 9 year old daughter and obviously want to live as long as possible but am now feeling a bit worried in case I can't tolerate the drugs!
Any comments/replies greatly appreciated, thanks xxx
Annrose, Hi I live in the USA in Pennsylvania, about an hour west of Philadelphia. Ibrance and letrozole worked for 21 months for me. Letrozole made my knees scream at me! They settled down some after about 6 months and taking oxycodone. I only took it if knew I would be on them. Ibrance made my legs week. I started it in August and being in the house through the winter I didn't realize how weak they were. We went to a friend's in late Spring and she has a lot of outside steps and walkways to get to her door. There is no rails and I couldn't step up one step. It didn't matter which leg was up or down. I would suggest exercising your legs. We all get different side effects, but I know a couple ladies who had this problem. Also, my first scan at 3 months showed some improvement, the 6 month scan was major improvement. Make sure you and your Dr. give it a chance to work. I have lung mets. They thought I had one bone met, but recent MRI says no bone cancer just osteoporosis. I've had lung mets since Nov 2005. Good luck! FF
Hi riverside dawn good luck with IBRANCE I have just finished 2nd 21 day course. It's well proven in the USA
Hello Nicky delighted to talk to you. Hope you are having a good day. Just finding out how this site works.
so little info of my oncologist so much to take in. I am on the new drug IBRANCE USA. Pablociclin England.
is anyone else taking it? I have a lot of side effects. What mess are you taking?
Have replied to your other post. Hoping you get some other replies as well with something more helpful than I was able to give!
Hi Ladies, OK it will be decisions injection every 6 months for my osteopcrosis. I have to see my dentisiry first and waif 8 weeks from treatment. I go see Dennist for a cleaning on Thursday. Hopefully if I need any other work I can get in quickly. Have a decade scan next week plus cardioaogist. Blocking these things out of here. My CTsaid stable. So staying on the same drugs. Scan in April. FF
So those of you saying I deserved treats.... We’ve booked a holiday to Mexico and we leave in 20 days!! xx
i hope your weather improves...what a bu*gr....I think the worlds weather is changing because of what us humans have been doing globally.......and it's scary😱. I don't know what the answer is.....and our b weather has also been affected...... stuff you get often makes its way to us!😨
anyway, take good carexx
you may may be right about Eribulin, but when I started it 15-18 months ago, I wanted a short break and onc said anything up to 6 weeks would be ok, but more than...- I'd lose it. However, Nice have since licensed it differently so you may well be eligible.
i recently wrote to Nice about Ibrance because they have only licensed it for those mets ladies who have not ever had chemo...they said it was because there is no evidence that it works for the group who have had prior chemo......there is no evidence for that group because the trials didn't include that group..,.i get so p'd off hearing stuff like that, because in the USA ladies in that group get it....and some do respond!
so in the Uk those of us in that group have been hung out to dry!
Also fulvestrant (which I am now on)has been shown/there IS evidence for...to work even better jointly with Ibrance - so when that fails...I will always wonder if it might not have failed if I was on ibrance as well.
Nicky, I could go back to abraxane bc they stopped it bc of harsh side effects, but it was still working. I'd p refer to stay away from it unless I'm desperately. I do know that you can revisit a drug if it failed many years ago. Just not sure how many. No, guarantee that it will work again. We are never guaranteed that though! Lots to talk about with my oncologist tomorrow, if I get there tomorrow. We are expectlng an ice storm over night. If that happens I won't be going. I drive in snow but not ice!
Hi Nicky, thank you very much for getting back to me, I appreciate it. Long may your hormonal treatment work well for you, Kxx
Firstly Kate. I had chemo (FEC) back in 2008 on my secondary dx. This was probably the wrong choice for me as I ended up afterwards with severe heart problems which later on caused me no end of problems. However my option was chemo or hormonal and I was so scared of it all spreading (I also had a local recurrence) that I wanted to blast it. Anyway it did blast it! I then went on to having nearly 5 years of stability on anastrozole, a hormonal treatment, plus of coursebone strengtheners. After that, and a liver mets do to add to the mix, I had capecitabine which worked for about 18 months, in which time I got my heart issues sorted out. A biopsy of my liver had shown I was now HER2+ (having been HER2- up until then) so I went onto Herceptin based treatments, as well as letrozole (after the chemo elements were completed) . This was a bit of a red herring as it turns out I’m only weaklyHER2+ and therefore haven’t benefitted really from those treatments, other than the chemo part and the follow on hormonal which I have responded to well. So now I’m back on hormonal, aromasin/exemestane and will have to see how long that works for! I am well aware I am getting through the treatment options and so far haven’t re-visited any treatments (in answer to FF) which I suppose is possible especially ones that haven’t failed as such. In the time I’ve had all these treatments, which seems a long list, I haven’t been hugely affected by SEs, luckily, and I don’t think if anyone had told me 10 years ago that I would be ‘happy’ to put myself through them that I would have said that I would. However you do what you have to do and so far I have responded well to each treatment (other than the Herceptin side of things which did b*gger all!).
FF- as I’ve just said above I haven’t revisited any treatments but I do know vinorelbine would be on the cards for me as a treatment I haven’t had. In theory I could re visit Eribulin, which was the last chemo I was on, as it didn’t stop working I was just advised to give my body (notably my bone marrow) a rest from chemo. However in the UK we have a governing body (NICE) for our health service which advises which treatments you can have for free and they have strict criteria so the fact that I have had it may mean I can’t have it again as I may not fit the criteria.
Thanks ladies for all the info! Oncologist this Monday, Cardiologist the following Monday. Will try to get into the dentist somehow. Lol I was trying to get most of this accomplished before my granddaughter arrived. Instead I'm getting it all squeezed in with her here. Plus seem to be running out every day in this bitter cold. I've also been making my appoingments for 8:00 in the morning bc I go to work at 1 in the afternoon. Feeling overwhelmed at the moment, but I need to get this all out of the way. I figure I'm still going to need a bone density, and echo cardiogram. I wouldn't be surprised if I need a stent. I was told 6 years ago that I had a tumor processing on an artery and no one has said another word. Probably will need more than one centrist appointment, I never get out of the dentist without a problem. I decided I will hope to have all this accomplished by March. I was shooting for Feb. but I'm going to drive myself crazy with appoingments.
Nicky, Yahoo for 10 years! I'm my oncologist longest living patient at the moment with bc mets. I wish t h sir were others with more years to give me more hope. A few years ago on "bcmets.org" there was a lady with 18 years. She has since passed. I'm at 12 and kinda back to scared. Have you ever revisited a treatment? I was going to talk to my onc when I need to change drugs again if I can revisit vinorelbine. It's been 6 years since I took it, but it had worked for 5 years. It was a very easy drug for me. I know that after a while you can try a drug again and sometimes it works. I don't expect 5 years out of it again, but sometime would be nice. FF
Hi Nicky, can I ask have you been on treatment throughout this time, and what are you on now? I’m almost two and a half years in and find posts like yours inspiring. I went from being told ‘we really don’t think there’s anything wrong with you but we’ll do a mammo and node biopsy anyway as your here’ (I had been saying I could feel something in my axilla for years, had previous mammo and ultrasound, all clear) to going back for the results a week later and being told I had cancer which had spread and was most likely stage 4. My mammo still didn’t show anything and my primary hasn’t been found but all tests confirm it is breast. (Yes, I definitely have cancer as I received a message saying how lucky I was that I didn’t). Started Letrozole/Denosumab and luckily have coped well and my follow up scan was good, but know there is a lifespan to the drugs and appreciate this regime is letting me off lightly! I have spoken with my Onc about what would happen next and was told there would be a couple of options, one being similar but not as easy to take, but didn’t elaborate and I left it at that. While I read stories of being on this type of treatment for longer, I’m also aware that around 3 years is the average, I do appreciate we’re all different and so many factors need to be considered when treatment plans are devised. Thanks, Kxx
I have had all 3 of the different types of bone strengtheners. Firstly I was on pamidronate which is pretty old school and was an IV every 3 weeks. This was OK whilst I was having 3 weekly chemo, back in 2008, but became a drag going to the hospital every 3 weeks once the chemo had finished. I asked to go on to the oral form, which I did for several years until my bone mets spread. It is a pain in the butt and, as Janette has said, with lots of restrictions but for me it meant I could keep away from hospital for as long as possible (my other mets treatment at the time was anastrozole/Arimidex). It also caused a lot of wind - luckily of the burping variety but annoying and uncomfortable all the same. Most of us in the UK are now on Denosumab/Xgeva which is a subcutaneous injection given anything from 4 weekly to 6-8 weekly and in my experience of all 3 it is the one with the least side effects and the least impact on my life style. A quick minute or two on the ward then out. In fact I know of one lady in the UK is allowed to give it herself but the rest of us seem to have to have it administered by a nurse as they wont let it out of their sight as it’s quite expensive. It is the newest drug and therefore the most expensive however when you take into consideration the cost of setting up an IV, nurse time and bed/seat space on a ward I don’t expect the overall cost is any more than the IV drugs.
Hope this helps
ps glad all of us old timers have been able to reassure some of the newbies. I’m now coming up to my 10 anniversary of secondaries and although have had lots of different treatments over the years I’m still currently free of pain and carrying on doing as much as I can, a bit more tired maybe but that comes with age as well. Xx
Hi Funnyface, I can only speak from my experience with Denosumab but I would definitely advise getting any dental work done before starting, if you need any. I had to have some done after, followed all the guidelines but had some problems. I agree that the actual Denosumab injections are easy enough to have. Hope all goes well whichever one you have, Kxx
Hi ladies I have some questions. I need to go on bone strengthening drugs bc of the osteoporosis in my back and one spot of cancer. My orthopedic surgeon thought infusion would be better than oral. I go talk to my oncologist on Monday. I just wondered if any of you have taken oral bone drugs and do they work as well as infusion. Also some of you are on injections. Why an injection instead of infusion? Then I saw there was a drug you can get only once a year. Also which drug is worse for ONJ? I need to go have a teeth cleaning and see if I need any dental work. Is it OK to get this done if you have just started the bone drugs or should I hold off and get that dental appointment first. I really need to get started so I don't break my back in another spot. I see some of you get pain from these drugs. Have any of you taken Claratin a few days ahead like you do with neulasta to reduce side effects? Just trying to get my thoughts in order. FF
Great riversidedawn, no it definitely won't..,.we are all tugging together on the same side of this tug of war xx
Great news Jellytot and a great way to start the New Year. Hope you can relax now for a bit and have some treats planned - it's what has gotten me through many years of scans and treatments, a liitle trip here or there or a nice evening out - smething to look forward to. Interestingly I don't normally notice having any aches from my denosumab injection but today I have felt a bit achey - but I did walk a few miles - so maybe I do suffer a bit as well. Hoping your aches go away soon.
Buddyfan - I think we have all struggled with our secondary diagnosis as it so often comes completely out of the blue with no warnings of anything 'going wrong'. It takes time to adjust and the only reason so many of us seem to cope is that we have been living with this diagnosis for many years. Although this sounds dreadful it should give you hope that you can live for a long time with this condition, with limited impact on your life, rather that finding yourself sitting around waiting to die - which I expected to do! As Bon has said having a bone strengthening injection (or IV or tablet) will help the bones to heal and strengthen and I think all of us are on one form or another - if you are not on one it would be worth asking your onc why not. The other treatment, as Bon has also said, will depend on what type of BC you have - whether it is hormone postive (when you may be prescribed hormonal treatment), or HER2 positive, when you will be prescribed a Herceptin based treatment. You can also be prescribed chemotherapy either in IV or tablet form. All of these are used to prevent the spread of mets and to contain the existing mets, or shrink them in the case of soft tissue mets. It does depend on your own situation and also what your oncologist prefers to use at this point in your diagnosis. I have learnt on here, from the experiences of everyone with mets, that there isn't a standard route to take, although lots of us will have had similar treatments along the way. If you are finding it difficult to cope it might be worth seeking professional help to discuss your worries, quite a few ladies have found this helps.
Wishing everyone a Happy New Year and hoping all treatments are kind to you but really horrible to the little uggers!
There are three types of treatment for different aspects of bone mets.
The first is chemo or hormone treatment to stop or slow down progression.
The second is radiotherapy if you have pain.
The third is a bone building and repairing drug, either denosumab which is administered by injection or a bisphosphonate such as zometa administered by infusion.
Together they will hopefully keep you going for a long time.
I think some people do feel achey after denosumab, I think I feel aches just before and after but it's hard to tell because exemestane has a similar effect on me. Must be better though than trying to get Zometa into non existant veins.
I'm so glad you have had good news. You deserve some.
Happy New Year.
First onc appointment of 2018 yesterday, had the news that my tumour markers have halved! Also that my scans are stable - Hooray.
Then had my denosumab, feel a bit achey today - is this normal, I've only ever had one denosumab before, always zometa before that xx
sadly, there are so many of us; surgeons need to refresh the notes and he may well have have forgotten until he saw the notes.
i have several bone mets in pelvis, spine and ribs...never had a biopsy of those as it's assumed that the cause is from my bc. The other thing is that to my knowledge the treatment for bone mets tends to be that same for most of us...either denusomab subcutaneously or a biphosphonate such as zometa by I/v once a month.
'these drugs are pretty effective re helping heal over time....if you get put on one..arrange for a full dental check up and clean beforehand, as dental extractions can cause side effects once you are on these drugs.
radiotherapy is usually only given for pain, if required.
oh and the MDT do meet and suggest the ideal treatment plan, for each of us, so that might explain his caution - he likely wants to see that before proceeding...try not to worry.
best wishes and keep in touch,
Yes, well done Maria,
i was was booked for whole body MRI yesterday and suddenly recalled it was a head first event and for an hour...I hadn't slept much the night before as I kept thinking what if my fulvestrant hadn't worked? So I rang the oncs pa and they arranged a sedative for me as I was thinking lack of sleep might make me jittery!
actually after the sedative I got into the scanner and was lying there clutching my buzzer and I suddenly realised how very comfortable and contented I felt...snug as a bug in a rug..I think is the expression....! I actually enjoyed the experience.....
i knew I wasn't to move...and I fell asleep at one point and dreamt I should hand our cakes to people...my hand twitched which woke me up....so I made sure I stayed awake after that!
sadly my results have to wait till next Wednesday, but have managed to stand back until then xx
Well done you! Sometimes the bloomin scan experience is worse than the anticipation of results! Anyway it sounds like they have a plan in place for you which is great. When it comes to rads for secondaries, which is normally for bonesrather than other mets, it is a very short period of treatment, usually a few days to zap the area causing problems, and nothing like the length of time you have with rads after a primary. Although I’ve not had them myself for bone mets I’ve read, over the years, of many ladies having them. It seems there can be a flare up in the site itself for a few days (week or so?) afterwards but then things settle down and the pain, in most cases goes. As far as I know rads will actually kill the little uggers , It’s the only treatment that actually does kill the cancer cells but unfortunately we can’t have our whole body radiated as it would kill us!