Excellent news Nicky! Congratulations, you must be so happy.
Fingers crossed we can all follow in the two Nickys' footsteps!
Just wanted to let you know that I had my results from my CT scan today and everything is stable 🙂 I am soooo happy as it's 2 years since I've had a CT scan done and everything was looking good - as I saw when my Onc showed me my 'slices' on the pc! What a relief and a big Thank you to bisphosphonates and Arimidex for keeping me this way for over 3 years now.
ps - sorry you have to join is Pat but hopefully stories from Val, Liz, Belinda and me can really help you with your recent diagnosis. Also, I had Pamidronate when I was 1st dx (have now moved to tablets at my request), you often feel a bit rough after the 1st one but not usually on subsequent ones. Also Zometa is more expensive so it's not given in all PCT's - the lottery again - however Pamidronate and the tablets seem to produce the same results from what I've read before. Good Luck with your treatment.
Val. Thanks for that, I will certainly ask when i see him again. Already had one treament last week and felt very quesy the day after but that wore off, so looking forward to the next one!!!
Love Pat x x
Trash you will probably be having Pamidronate infusion which is the one I started on way back in the year 2000. You may want to ask if if you can have a Zolidronate infusion instead ( also caled Zometa) as it is a much quicker infusion. I mean it takes less time than the Pamidronate. Not sure why they still use Pamidronate but perhaps there is a good reason for it but perhaps it is something you could ask them. This treatment is an easy one and the only effect I noticed when I first started was that is was a little tired that day. Hope it does the trick but there is nothing to worry about at all. Much love Val
Wow!! that's some achievment after 12 years, really encouraging. It has come as ashock to be diagnosed, I wouldn't have known if I hadn't had a hip replacemnt. I felt really well, little pain and waht pain there was I thought was from the hip op.
If the Arimidex doesn't settle down I will take your advice and talk to my Onc. Have to have a monthly bone infusion of something beggining with P can't remember the name.
OPnce again thanks to you all for your kind words.
Pat x x
Hi trash, Sorry you have had bone mets diagnosed after 10 years. I know how that feels because it was ten years before I got my bone mets diagnosis and it came as quite a shock because I thought all was ok. Well it is over 12 years now since I was diagnosed with mets and I am still around. I was on Arimidex then it was changed to Aromasin and now I am on Femara. why not ask your Oncologist if changing your hormone would improve things for you and thus give you less side effects. I was on the Bondronate tablets for bone stengthening but recently went back to the Zolidronate infusion which suits me better right now. We are a friendly bunch on here so keep posting so that you can get to know us and we can get to know you. Love Val
Thanks for the re-assurrance, and to know that you are still going after 3 years, that is so encouraging. I didn't feel too tired a fter radio last time but, I think that was because it seemed a doddle after chemo.
Again thanks to you all.
Pat x x
Trash - sorry about the bone mets, especially after all that time. Yep, the Arimidex can cause those SEs, along with the rads and the monthly bone drip. I'm on zometa and have been for 3 yrs and even now, I'm always tired the evenings after the drip itself. I had a one-off rads blast to my spine earlier this year and that wiped me out for a few weeks. I'd forgotten about the rads tiredness from first time round and thought one dose wouldn't have such an effect - wrong!!!
Hope all goes well for you from now on.
Thanks for all your inspiring comments. I haven't posted for a long time, thought as i had got to nearly ten yers since diagnosis all was well. It isn't have been told I have mets. in spine, pelvis and thigh and ribs. Have had a course of radio and am back on Arimidex and bone infusionmonthly. My question is am I right in remembering that Arimidex maks all the bones ache and you feel very tired.
Good wishes to all
Ah thanks for the best wishes all xxxx. I will post on the inspiring part..lets hope we are all stable mabels for a good while!
Oh Val, the support stockings..aren't they just awful..very Nora Battie..well mine were. I had no symptoms but on diagnosis of my bone mets they found a clot to my lung so I had to have 6 months of Warfarin. But must add I had just fractured my hip so was unable to move for a few days before I had the replacement so guessing the clot developed then. Have some lovely times with your daughters.
Brilliant news Belinda!! it always lifts my spirits and gives me hope when someone gets good scan results, long may it continue!
Belinda - I am so pleased to hear you too are stable. I agree, do stick it on the secondaries inspiring thread too so more can join in your great news. Stable is such a wonderful word in our world isn't it? I had fully expected them to tell me mine was progressing last time but very happy to admit I was wrong!!
Val - glad to hear you are feeling much improved and what a lovely hubby to look after you so well. Does he realise if he does things too well, he'll always have to do them??? Have a lovely time with the family all together. It will be great.
Great to hear your update, have been thinking about you and wondering how you were getting on. I had my radiotherapy on Friday last week - just one blast, and they managed to do the planning and the rads all in one day with just a couple of hours inbetween, during which Mum and I popped out for lunch.
Glad you got the blood transfusion too, sounds as though you needed it, and it makes such a difference when you feel well in yourself.
Will be so nice for you to have the family together too, bet you can't wait!
Hi Belinda ( and everyone else too), I am improving daily after my operation to put pins in my femur and hip. I am now managing to walk unaided so the crutches are seldom used now. The wounds are much smaller than I thought and are healing well. Not sure if I would be in a rush to go through the op again though! Very frail and only got home early because my husband is/was a nurse. he is wonderful and has been doing everything. The house has never looked cleaner or tidier since he took over! Takes twice as long and gets distracted easy but hey ho!
I did have to have 2 units of blood on Friday before my Zolidronate infusion and now feel much the better for it because I can breathe normally again. I am not so knackered after a shower either. Still wearing the dreaded support stockings but realise it is necessary after an op when we have bone mets. ( I didn't know before that we are more probe to DVTs with mets).
I got a letter this morning for the Radiologist on the 10th. I was meant to be holidaying in France right now but had to cancel. But my daughter has now booked a flight over here and arrives on the 13th for a week. She hasn't been here since 2009 and it will be a treat to cuddle both my daughters at the same time!
Hope to see you posting again soon Belinda. I miss your imput when i am feeling low! Much love to all, val
Hey Belinda - that's so, so good 🙂 Really pleased for you and no wonder you burst into tears. Not sure, but have you posted a separate thread on the Secondaries inspiring 'bit' - it's well worth doing to help others who don't look at the bone mets thread.
Ah thank you Val, how are YOU?
Just after I put the phone down I burst into tears (of relief!) and as I looked outside a white feather floated down my window. Not that I read too much into it but a strange ish coincidence.
Hi joules, sorry you have to join us. I have markers taken every 3 weeks, at the end of my capecitabine cycle. I have the CA15-3 and the CEA markers taken...more info here, http://www.labtestsonline.org.uk
I understand a bit more of where you are at treatment wise now, thanks for the update. When I was dx with my primary in 2003 I was on zoladex for 2 years, and tamoxifen. After 2 years I stopped zoladex but was still on tamoxifen. The Tam didn't work for me either, as I then went on to have mets. It seems the zoladex was holding things at bay until I stopped having it so I hope that is the case for you. After my chemo, for bone mets, I was checked for menopausal status and found not to be post menopausal so also had zoladex so that I could have an Aromotase Inhibitor (AI). It only took 1 injection to put me into my menopause as it shuts down oestrogen production pretty quickly - as you will notice if you get the usual side effects of the menopause such as hot flushes. I would think (hope) your Onc would know this and should start you on an AI fairly quickly, they do work in a completely different way to Tamoxifen so I hope this would give you extra protection over and above the zoladex. I do echo what Dawn and Liz have said about the 3 monthly injection, well worth checking out the thread that Dawn posted so you can go armed with any questions when you next see your Onc. BTW I am also on the tablet form of bisphosphonate (ibandronic acid) and you will find some of us have the IV version and some the table form.
As to 'markers' I don't have them checked but there are quite a few who do. It seems to be the Onc's preference as to whether they are checked and used as indicators.
Good luck with the treatment and I hope you don't get too many menopausal symptoms with the zoladex.
Am glad you have had replies from the 'experienced' ladies on this thread and am sure they will have helped you. I'm another with bone mets but not on chemo. I was originally on chemo 4 yrs ago after primary diagnosis when they found the bone mets at the same time. The chemo was to shrink the tumours before mx and anc.
Like Dawn, I have some concerns about the zoladex. I am 100% ER+ and PR+ and was originally on tamoxifen but after 6 months was swopped to arimidex with zoladex on a monthly basis. Zoladex is given on a monthly basis as it is only licensed for bc in the UK on that frequency. The 3 month version is licensed in the UK for prostate cancer. I was told that one of the potential problems of the 3 monthly version is that it may not work as efficiently as it should over the whole 3 months and the effect would start to wear off before the next jab was due. If you are hormone positive, then this is obviously a risk...The 3 monthly one isn't really a stronger version, it is 3 times the amount given in one dose. I have 3.6mg and the 3 month one is 10.8mg. My onc insists on the monthly one for me.
I'm on zometa for my bone mets and have been on this and the arimidex and zoladex for 3 yrs now. I'm stable!
Hope this makes sense to you.
I hope you find a lot of help on this thread with so many of us sharing our experiences of bone mets.
Something you wrote above set alarm bells ringing - there has been posts in the past about 3-monthly zoladex injections so I will post the link here and ask if any others are given 3-monthly shots. Maybe we need to post this in the other forums outside the secondary ones as well. You will need to scroll down a bit till you come to the post.
It may be that things have changed as that post was made a couple of years ago.
Many thanks for the very quick replies nicky08, nicky65 and donna. I understand a little more now.
I am ER +.
After going through mx and total clearance, I had only just finished chemo in April and Radiotherapy in June and now find that it has spread to thoracic and lumbar vertebral, right iliac crest, sternum and scapula, spine. - I dont really know what all this means as I was not in the right mind to understand, as you all know so well. I had a CT, MRI and Bone scan before my mx and all were clear. My onc sent me for a CT scan as I started to swell to check my organs and it picked up something on my spine so was sent for an MRI which picked up all the above, so my onc said that the tamoxifen mustn't be working so I have just started zoladex injections, which will be 4 weekly to begin with and then said I would then go on to the stronger 3-monthly. I have also been given ibandronic acid tablet once a day. My onc said that as soon as they know for definite i am post mens then i can then start taking femara as well, but that it wouldnt work for me yet.
Another thing i dont understand is that a few of you talk about 'markers' - is this something that i should have done/tested?
That was very good news about your Scan, Donna. I have read on here about a few people who are doing well; it has helped me out of a very dark place these past few weeks. xx
Sorry to hear about your recent diagnosis however you have come to the right place for support and info - even if you have to read 160 pages of it! There doesn't seem to be a set type of treatment for bone mets and I expect this is all down to grading, hormone receptiveness and HER receptiveness. I was dx with bone mets in 2008 and my onc originally said that, due to me being very ER and PR receptive I would have hormone treatment. This, she explained, does the same job as chemo, but takes longer to see the results however is considerably 'easier' to handle. As it was assumed my mets had spread via the blood system, not lymph nodes, I decided to have chemo to give them a good blast. I then moved onto hormone treatment which, touch wood, has been working ever since.
Hope this helps, along with Nicky65's answer but please ask anything else - it is all very confusing and surreal when you've just been diagnosed - we all know how that felt.
I don't know if you're ER+ and PR+ because that can affect what treatment you are given, most(not all) oncologists like to try treating with hormones first, then if these don't work, or stop working it is then onto chemo. Capecitabine is not considered to have so many debilitating side effects, so this is one that is often chosen first.
Obviously people who are ER and PR negative don't go down the hormone route, so have to rely on chemo.
It is such a complex decision based on so many factors, but I hope my simplified explanation helps? Have you been told that you are about to start capecitabine, or have you read about it and wondered why you're not on it? I was concerned that my cancer was continuing to spread on hormone treatments, but as it was only a mild progression, we continued with the hormones, but after Tamoxifen, Aromasin, Femara and faslodex all failed, it was decided I should try a 'softer' chemo instead, when my liver mets progressed.
I was diagnosed with secondary bone mets in Feb 2011. I had Femara daily and then Zometa every three weeks. Femara did not work for me, the tumours got worse over a three month period and my markers continued to increase. My onc suggested trying the cap, the markers started to decrease and alot of the tumours disappeared from the scan, the original ones in the hip, spine and leg reduced in size by over 50%. All looks good so far but next scan is next week so fingers and toes crossed.
What has your onc suggested for you?
can i ask a question please. Why are some people on Cap for bone mets? I have just been diagnosed with Bone Mets and have taken some days to read through each of the really well informed messages on the 160 pages!
yes I enjoyed the get together very much and would be really happy to do it again.
As I understand it with the cyberknife the tumour has wrapped itself round the nerves exiting at L2 and it sounds like even given the precision of ck that a margin is needed and there just isn't one!! So it sounds like they are saying that given the tumour is stable just now it isn't worth taking the risk, but would be if it was on the move again. I see my cons. in 3 wks time so will have a chat to him to get his take on it.
I'm so pleased to see you have got your appt through! I really hope you get answers to your questions and that you will get a treatment plan and hope fron the Marsden. Thankyou for your kind words on the other thread, I'm still feeling fragile but am getting back to my usual self slowly.
Dawn, was a bit confused by the 'not now' and am still a bit confused by the reasoning, I thought the whole idea of cyberknife was that it was very precise? Anyway, I'm sure that they are doing the best for you but can appreciate how scary the thought is. Hope you've recovered from the Sussex Secs meeting of a few weeks ago!? We all really enjoyeed it and must do it again!
Welcome to all new and returning people, hope your tests and treatments will go well, continue to share with us, we all get strength from one another.
Enjoy the crazy weather! love Julie xx
It's a PET scan. He has said that I will have to Zometa every three weeks an probably stay on cap. He said they will probably aim to get it too one week on one week off. I've had a reduction, now on 3000mg a day dropped from 3300mg, things are a bit more tolerable now.
He said he has some patients who have been taking it for many years? I haven't managed to find anyone yet though. People seem to have so many sessions an then hormone treatment, but femara didn't work for me. the last scan only showed it in the bones and currently not anywhere else.
Many thanks for your feedback
Indeed what a shame you aren't at Sutton - I often wonder of the many people I have seen over the years if any of them were here on the forum. I'm not sure what has set you off in a complete panic - which drug is your onc saying you have to be on indefinitely? I am on zometa indefinitely as are most of us with bone mets, at least one or the other of the bisphosphonates. I am also on herceptin indefinitely. It is quite scary when we realise we have to be on something once we have secondaries because the likelihood of things kicking off again are pretty high. The one tip I would give anyone on capecitabine/xeloda is that if you are having bad side effects make sure your onc is aware. Most people are started off on a pretty high dose and a while back there was some controversy about this dose being over the top. Personally I would be asking for a reduction if things got too bad.
Hope the scan goes ok on Friday - is this a CT scan?
As I'm quite new to this I've been reading up on you. I've found your info very inspiring. I'm at the Fulham Rd hospital but have had a couple of op's in Sutton. My check ups are all at Fulham though. That's a shame it would have been good to have a catch up. My onc has given me cap on a two week on one week off, and I have zometa every three weeks. At my last check up he mentioned that I may have to stay on the drug indefinetly or until it stopped working... This set me into a complete panic
Scan next Friday, I'm already nervous.
Any tips would be greatly appreciated.
Hope your enjoying the sunshine
Liz, I'm 51 and I'm still having Zoladex implants. My onc stopped them a year ago thinking I was probably menopausal by now but blood tests revealed I was still producing lots of oestrogen so started them up again - assume they'll be indefinite also until I'm told otherwise
Have been for my treatment today for bone mets - pamidronate and zoladex implant.(Also on letrozole) The last couple of times I've had the implant the nurses have been a bit surprised that I am having this as an ongoing thing due to my age - I'm 54.
I haven't seen the cons since my secondary diagnosis - September last year- and the reg that I usually see says that the cons has made a note that I will have this implant indefinitely.
I'm just curious - is anyone else having this implant in their 50s?
Wondering about mentioning it again to the reg when I see him next month especially as I don't like having it done as I find it quite painful.
Surely,at my age I can't have much oestrogen left anyway!!
Hi Happyfeet so glad you have the appt at Marsden through. Is it the Fulham Road one? and Donna which one are you at? I have been with the Sutton branch since 1990 so it is like a 2nd home to me LOL.
I'm sorry to hear that some of you have progression with the bone mets. When mine were diagnosed in 2002 I was initially on chemos because they had not been checking for her2 status at that time. I started on xeloda but had to come of because of the se's. I went on to have navelbine which held it back initially but when I came off - back it came! We knew this because I had a lot of large lumps around the neck lymph nodes which were very visible. I guess I am very fortunate that since then herceptin has kept me stable for most of the time.
I did post on the cyberknife thread about my latest news - but briefly they are not going ahead because the risk of damage to the nerve canal is too great given that my bone mets there are stable. They have said should I have progression they would certainly look at this again. Quite scary stuff really 'cos if it does progress that risk is still going to be there.
Hope you all have a lovely weekend in the sunshine.
Glad you've got your appointment at the Marsden. I've been at the Marsden for the last 5 an a half years. They are great an so supportive I'm sure you'll feel better just getting there an talking to them. I'm on my 6th cycle of cap, feet have been awful, hands not too bad. I've got my scan next Friday and the results on the 12th so fingers crossed.
Look forward to hearing how you find the Marsden, might even see you there.
Have just had a phone call from The Marsden - appt for second opinion is on 19th October. Progress. Am still ploughing thru all the posts on here - up to page 60! Have learnt an awful lot of stuff which will help me when I go for appt. (as in "why can't I have x,y,z etc") Love to all, especially those having a really tough time at the moment. And welcome to those newly diagnosed, but wish you didn't have to join us. I was diagnosed with extensive bone mets in June and have gained strength from the people on here, am still terrified of what the future holds but am coping. Thank you so much all of you. x
ps I'm a knitter too so thanks for the link to ravelry. Thanks for your pm Lucinda - have sent you one back!
Sorry to hear your news,Annie. I am on navelbine, an oral chemo. Very doable. Just on 2nd week of second cycle. Last cycle showed a good result so fingers crossed. We have now started a craft thread, a place to share triumph a nd not so great triumph in knitting and the arts in general. I need to get some preliminary drawings done for a print that I am going to do. Haven't decided on a mono print or a collagraph yet though
My bone mets have progressed 😞 just found out yesterday. I’d been having terrible pain in my back and legs for the last 2 weeks and yesterday an MRI confirmed that my solitary bone met in T5 is now ‘extensive spine mets’. I only had an MRI spine, so possible a CT is in order now to see if there’s anything else lurking. I am fearful for my hips as these are very painful. I’m going to see my pain nurse today and my oncologist will follow with some chemo recommendations. I’ve returned to this thread for some strength and inspiration and what do I find? Knitting! I love knitting. It did make me smile.
Like you Tracey, I suffered with SE’s from primary cancer chemo so I hope whatever is in store for me is bearable. This latest setback has at least firmed my decision to leave work and retire at the age of 30, there’s so much knitting to do.
Annie. X x x
I was on tamoxifen, had blood clot so changed to zolodex/arimadex, been on these for 9mths, plus pamidronate 4 weekly, these obviously not worked so its chemo next, i guess im hoping it wont be as bad as it was for my primary bc as i suffered badly with se's !! This is definately helpful thankyou.
My bone mets haven't responded well to hormone treatment either - and we've tried Tamoxifen, Femara and even Diethylstilbestrol, which is a synthetic oestrogen. I've had 2 courses of chemo since my secondary diagnosis: Carboplatin and Gemcitabine a year ago, which worked very well, and now I'm on Abraxane and Xeloda. I've had four of my planned 8 cycles on this regime, and fingers crossed this seems to be working too, as the pains I had developed in my ribs and back have all disappeared. The carboplatin/gemcitabine combination seems quite common in these circumstances, as does Xeloda (capecitabine), which is an oral chemotherapy, but I haven't heard of many other people on Abraxane.
The waiting is the worst part, I know - I'm sure you'll feel better once your treatment plan has been decided. I hope this is of some use,
Havent had the best of days, saw onc today and from mri results hes decided that the hormone therapy just isnt working so wants to start chemo!!! My bone mets have spread very fast and aggressively in last 9mths, ive got ct scan on 18th oct to check for further spread then im seeing him again on 26th to discuss results and plan chemo :-(( he says if the mets are still contained in bones then the chemo will be different to what they do if theres spread to liver or lungs (have symptoms that indicate this could be the case!) obviously hoping there is no further spread, what is the usual chemo used if its just bone mets?? want to prepare myself re side effects etc, it feels like one thing after another with this b****y cancer!!! My primary bc was hormone positive but onc feels it may of changed to neg..as it didnt respond at all to the hormones, is this normal?? I also have cancer in my chest wall which i guess they biopsy to test again, but waiting until i see him next to discuss everything..its going to be a long 4weeks!!!!!
Good to hear you're getting things sorted Val xx
take care all
What a difference a day makes....
First I have been asked to go into hospital early tomorrow for 2 units of blood which should help with the tiredness and breathlessness. I am getting my Zometa infusion too so it will be an all day affair as each unit takes 2 hours. Requested a bed in the unit to rest while it is going on and perhaps read a little of my new book inbetween dozing.
Even better news after phonecall from our elder daughter in France. As we are not flying off to visit her ( we were supposed to be there for 2 weeks from today) she has booked a 10 day visit to see us! I am over the moon but my parents will be even more delighted as she hasn't been here since 2009! A party will need to be orgaanised and perhaps I will be feeling better by then. She will be here in 2 weeks time. Just hope my radiotherapy doesn't clash with her visit....may have to postpone.....for a few days anyway.
Away for a lie down ( again) it will be so good to feel more energetic. I am fed up being a patient Patient! Love to all, val
I asked the radiologist when my bone scan showed an increase in the bone mets during chemo. He said that sometimes a patient can get chemo flare, which looks like the mets are worse. He said this is rare though. After the chemo had finished a further bone scan showed that my mets were stable and in some areas had shrunk.
Everyone seems to react differently to treatment and it is hard to compare. I also find it difficult to know what is a SE and what is the disease!!
Can't help much I'm afraid as I'm not triple neg but would say do mention your pains to your nurse/onc. Could be anything like SEs of drugs/hangover from surgery/one of those things or something related to bone mets. It's natural to worry about aches and pains as the sooner they are dealt with (if mets) the better. What sort of scans have you had so far? As well as showing the cancer in the bones, the scans can also show healing....and a couple of years ago I had a slight spread in ribs and at the same time healing in a bit of spine. There's no logic to it I'm afraid!!
I've had bone mets for 4 yrs since primary diagnosis and did get a bit of spread earlier this year and that was sorted with a rads blast. My latest scan 2 weeks ago show things are stable again. I don't take painkillers most of the time and feel well (apart from my current stinking cold!!!)
Hope the scan results are able to provide more info and then be treated appropriately if needed. DO speak to your team about the new pains though asap.
Good luck and let us know how you get on.