Bone mets - please join in

[scottishlass]

Hi Ruth/Thumbie,
I can help you on both drugs as I am on both of them. First of all do not give up on slow release morphine right away as once your body gets used to it, it is a wonderful drug and I have been on it for over 12 years. I nearly gave up at the first try but my husband encouraged me to keep on it for a while ( he is a trained nurse) and it really paid off. The first time i tried it it was a warm sunny day and I was in the garden and I felt as if i had drunk a bottle of wine ( I hadn't on THAT occassion!) and the room ( sorry garden) was spinning round. But your body adjusts quite quickly and the benefits are immense. I have been on larger doses but on a much smaller dose now. You can go up and down on these drugs as the needs arise if your GP agrees. My GP knows I know what to do and so does my Oncologist and they leave it up to me now.
Gabapentin was recommended by a doctor at the hospital who had recently worked in Neurology and told me it had been studied and helped people with nerve pain from cancer. I think the drug was originally used for people with epilepsy. I started on a smaller dose but when I went to see the specialist doctors on the Pain management team they increased the amount and I now take this larger amount twice a day on top of the MST. ( the slow release morphine). Some peopoe give up too easily ( in MY opinion before I upset anyone!) and I think the pain killers that I take have made a huge difference ( in a good way) and I have NO PAIN at all now. (Despite other problems which you all know about). PM me if I can help you or anyone else who is worried about these drugs. Best wishes Val

[Katie2002]

Good evening everyone - Happy Birthday Charile5,
How did your first day back at work go Claire? I am due to be phased back in at the start of December. I am really looking forward to it but also a bit apprehensive. I popped in today to see everyone this morning. Whilst in Reception class two lovely little boys invited me into the 'Beauty Parlour' and curled my ( very short) hair and filed my nails. God bless their imagination. All for 60p - a bargain.
Liz - I thought about you the other day - thought you might have been snowed in! Sorry to hear that you still are having pain in your back. Fingers crossed they'll sort it soon. Enjoy Edinburgh - you lucky lady. Wrap up warm!!!
Val - all the very best of luck for Friday. x
Esha- the hair ruffling continues - aarrgghhhh!!!!!!
Natasha- totally agree - Downton should be on prescription. Can't wait for Christmas Special. They crammed a lot in to last nights episode. Anyway hope you are feeling a bit brighter? x
I went for second zometa this afternoon. Also had my herceptin. Anyway Onc came to see me whilst being juiced up - as I was told is proceedure on Zometa days. The thing is I don't know why but I feel like he's just going through the motions. He says I have to have herceptin for a year instead of orginally being told indefinitely. When I asked why the change he didn't answer. He did say I could start to do Tai Chi - but part of me expected him to refer me to physio team at Christies or at the least give me some information re:exercise . As for scans as long as I am showing no other symptoms he doesn't like to over scan people. Don't get me wrong I don't like scans or waiting for results but thought he'd want to check the effects of drugs and to see if any progression at some point. I wasn't expecting him to scan me next week - but thought he may have said in e'g in 6 months. Am I just over worrying over nothing? The paranoid part of me lets my mind drift to feeling negative thoughts - is there no point? - I am not generally a negative person but I find meeting him very difficult.
Sorry everyone I just had to get that off my chest!!! Hugs and best wishes to everyone xxx

[lizcat]

Hello everyone,

Lovely day here again (when I say again, I mean 2nd day running!!!) with glorious views across the bay to the Lake District hills.
Just wanted to say Val, hang on in there and good luck with the results and onc meeting on Fri. I have zoladex on Weds and then an afternoon at the hospital on Thurs with blood test first, wait for results before zometa so they can keep cannula in, and see onc, or more likely her registrar, to see what to do about my back ache. My feeling is a rads blast and possible short steroid dose but we shall see.......Onc said last time I asked about denosumab jab that she would consider switching me if zometa looks like it's not as effective as it was. I have been on it for 4 yrs now. To get the denosumab, the criteria was bone mets plus either poor renal function or crap veins. Then they apply to drugs fund but not sure what it would be in Scotland. Am coming to Edinburgh on Weds of next week til the Friday with OH and his cousin for a whirlwind sightseeing trip but may have time to fit in a quick brew - would be lovely to meet you after all this time. I'll message you where we are staying via FB.
Good luck to all getting results and new treatment this week.

Liz x

[scottishlass]

Hi Claire so good of you to post when this is your first day back at work. I hope it is going okay. It is always hard to return to work even if you have just been off for flu. Thinking about you. Val

[myfanwy18]

Val, sorry to hear the scans upset you, hope you're feeling a bit more settled now. I've heard about the new injection instead of Zometa, it sounds very good. A big hug to you.
Love Claire

[scottishlass]

Thanks Esha, I am still reading the posts but only commenting when I have the energy. I have been for blood tests this morning and treament for Bone strengthening tomorrow and see my Oncologist on Friday for results of my recent MRI scans. This scan was most unpleasant and was carried out on a mobile unit which was a first for me. I am okay with normal MRI Scans now as have overcome my fears but one was for a Brachial Plexus scan as well as the scan for whole spine and I was quite upset afterwards. I wil not go into details about it, I am quite brave, and have overcome fears for all sorts of things over the years. I used to be scared of cannulas and now I don't even notice when needles go in as I am usually busy yapping!!!
I am following everyone's posts and love this thread. If I ony have stamina to read ONE thread it would be this one every time as I look on you all as close friends now. Thank you for your understanding as I am having a difficult time just now wondering what is to be done next. I know other ladies are expecting results and starting new treatments too and wish you all the best. I have been on Biphosphonates for around 12 years now and it has kept me going. I prefer the IV method to the pill version but am interested in the new injection. I wonder if I woud be abe to have that instead so will ask at the hospital this week. Best wishes to all. ( I accidently wrote breast wishes but glad I checked my typing first!). Val X

[Lemongrove]

Charlie5, like you I also have several bone mets, yet my tumour markers are normal. My understanding is that tumour marker tests are not always a reliable indication, because not all cancers express the protein that the tests pick up on. With regard to the reliability of scans, again my understanding is that they are a snapshot, that help to build a picture over time.

[myfanwy18]

Hello ladies,
Well first morning back at work today since April. I'm a little apprehensive but I suppose it will be good to get some normality back after this summer. Will let you know how I get on!
Claire x

[Guest user]

Hi Saffronseed,
Thank you very much for that information, I think I will take your advice and ask them to look again, although I do have 'mets' in several areas. I get the scan results on Friday, and it's my birthday tomorrow so an emotional week ahead!
Thanks very much x x

[Esha_Ness]

Hi All
Talking of bone mets and treatment NICE have approved DENOSUMAB , a monthly injection as an altenative to the other biphosphonates. In the trials it has done well and is rated highly for reducing skeletal morbidity. I have been told it will be on prescription in 12 weeks.
Just had a check up last week and pleased that my next PET scan is in the new year so can block things out a little longer and enjoy feeling very well and no symptoms.
Fot those newbies to the forum I was diagnosed with secondaries in Jan 2010( nearly 3 years ago!) I keep myself active ,busy and distracted as one way to manage my life.
Scottish Lass , good that you feel able to take a little more of a back seat for now, you have given the forum such energy, momemtum and information.
Esha

[Esha_Ness]

Hi All
Talking of bone mets and treatment NICE have approved DENOSUMAB , a monthly injection as an altenative to the other biphosphonates. In the trials it has done well and is rated highly for reducing skeletal morbidity. I have been told it will be on prescription in 12 weeks.
Just had a check up last week and pleased that my next PET scan is in the new year so can block things out a little longer and enjoy feeling very well and no symptoms.
Fot those newbies to the forum I was diagnosed with secondaries in Jan 2010( nearly 3 years ago!) I keep myself active ,busy and distracted as one way to manage my life.
Scottish Lass , good that you feel able to take a little more of a back seat for now, you have given the forum such energy, momemtum and information.
Esha

[na7asha]

Hello there lovelies.
Thanks for your response and I'm sorry if I worried you. To be honest I think it's all stemmed from my wedding anniversary. Was only married last year and at that point I was looking forward to a very different life. I've been wallowing in that a bit, I'll be fine. Sort of decided to think of my life as extraordinary. Not what I wanted but certainly not the norm. problem is the more I learn the more fearful I am. Still think it's rubbish and unfair but I refuse to give up hope. Ridiculous and unrealistic as it might seem, the clever doctors COULD keep dreaming up enough drugs to keep us going.

And another thing, what the devil are we going to do without Downton???? Shouldn't the NHS turn it into a weekly soap 😉

[saffronseed]

I had a nuclear bone scan after my chemo/rads treatment ended as I did have bone pain and stiffness. The results on the scan showed a 'hot spot' which the radiologist reported as mets on my t4 spine. The only way they said they could really check was to do a biopsy of my spine which is apparently quite dangerous so they avoid it. However I asked for a second opinion and they checked my scans again and in fact it was athritis - as they compared earlier scans and the hot spot was in the same place prior to my treatment and had not grown or shrunk (as I had chemo if it was a met it would have changed in some way). I must admit after being told I had secondary bone cancer then to be told well actually its arthritis whilst a relief, I was still unsure and suspicsious - if they made one mistake they could make it again. Anyhow that was 2 years ago - I still have stiffness in my bones (due to the hormone theropy I am on) but no secondary (as far as I am aware). I think it is very difficult to diagnose - I only had one very small spot on my T4 so that is why there was doubt about it being mets - why don't you ask for a second opinion - it costs nothing and they will check your scans throughly and be more sure of your diagnosis and make sure you are on the right treatments.

[Guest user]

Hi,
Thanks very much for the reply, they did an X ray before the bone scan, said there was 'nothing obvious' but patchy areas of density. I just wondered whether there is a way to be absolutely sure, or whether they just put two and two together and assume. I don't understand how all the other indicators can be 'normal', but the cancer be spreading. I guess I'm clutching at straws, I'm only 35 and have two young children, I've been doing this for three years now and can't bear the thought that I can't be cured. It's mentally very tough. I'm getting a lot of hope and comfort from this site though, folk are so positive and supportive.
thanks

[Lemongrove]

I've recently been switched from Bondronat to Zometa. I have always felt very stiff on bisphosphonates but am finding this much worse with Zometa. Is this a common experience?

[Tournesol]

Hi charlie5 and welcome,
I think bone scans show areas of increased uptake of the dye but that could be caused by several things not just mets. From my own experience, when they've seen something of concern on a bone scan they have done x-rays afterwards to check it out. But I'm not sure if that's what happens everywhere.

Best wishes,

Tournesol

[Guest user]

Hi,
I'm new to this site. Can I just ask how can they tell the difference between bone mets and arthritis? I have had to have an Isoptope bone scan due to pain in my left hip, I already have mets in my spine, ribs and pelvis, but all my blood tests are showing as normal and my tumour markers are down to 12.....I'm wondering how accurate this scan is?
thanks

[Guest user]

Hi Jacqui - just to confirm what Lucinda said about shrinkage causing pain - I'm on Cap but haven't had a bone scan to see if its working yet. I was having mild kittens thinking the rib pain in my back was progression but the chemo nurse on Thursday told me it can be indicative of healing too.
I've had rads twice to my spine. My PainMan said this was the best ttreatment for bone pain and it's worked for me. Word of warning tho - the first lot I had was thoracic down to upper lumbar spine and when tehy do this 'central' area it can cause nausea and feeling of unwellness which you do get over but throws you a bit if you're not expecting. The pain can also get worse before it gets better - in line with the healing comments I spose - but I was taking hevy morphine before my rads and now its just occasional breakthrough morphine I take rathert han slow release an breakthrough.
Natasha - ar eyou OK? Please post, if only to let us know you're alive and kicking
Nina

[lucinda]

Hi swanie
Could be lots of reasons for the pain getting worse,but not necessarily tumour growing.Have you contacted your onc team or bcn?I was on ibandronic acid for 2 years and was changed to zometa,since the change the pain got better.You do not say if you take any painkillers,rads did work for me and they are considering that to sort my present pain but I am hoping won't be necessary.My onc actually told me the pain in my hip might be because the met is shrinking and causing nerve pain.Please do not suffer pain, there is lots of pain relief available and being in constant pain is depressing.

[swanie]

Hi All
been a lurker for a few weeks. Like Natasha been rather low - I blame it on the foul weather, one of my chickens is so depressed with the dark and wet she won't come out the hen house (she is moulting) poor girl.
Val sorry to hear about your bone issues - like the others can I say please don't go, you have been such a font of wisdom. Let us bolster you as well.
Now a silly question - I am relatively new to boney mets so...if the pain is getting worse does this indicate that the tumour is getting bigger? I have not had any treatment other than Ibandronic acid and tamoxifen, thinking of going for rads.
Hey and have an ace holiday Pam
Good luck to all you ladies - hope you all become stable mabels
cheers Jacqui

[Guest user]

Lots on here since I last looked - so tired it's hard paging thru for threads.
Lisalauren - I had similar experience of total exhaustion and wanting my bed 24/7 when on aromasin. Aparently it was an unusual bad reaction but when it's bad it's bad!! I'd check with onc aSAP - I suffered 4 months cos I thought it was 'just me' being silly lazy anything irrational and then discovered it was the aromasin and I kicked myself for putting up with it. Get it checked!!
Pam - your scan results are inspirational. I'm just starting cycle 3 of Cap, and ahve tenderness in my ribs which I was convinced was progression which would be picked up in my bone scan in 2 weeks - but after seeing your results and speaking to chemo nurse yesterday who said it could actually be healing causing pain, I'm feekling less black now, just 50 shades of grey...
Natasha - cyber hugs going your way from Aberdeen. Nothing worse than feeling mentally low. Try and get out whatevers bugging you by writing, typing or just talking to yourself - somehow in teh open things seem a little easier - says she with 50 years experience of severe clinical depression so I do have an idea of where you are. You don't have to share whatever it is with anyone, just get it out of your head.
Lots of positive vibes to all with bone mets.
Nina

[Happyfeet]

What's up Natasha (apart from the obvious)? You have been thru so much and still going thru it so will have dodgy days. Sometimes best just to go with the flow and have a duvet day. Big hug coming from me, we understand. Hoping tomorrow is a better one xxx

[vercors]

Big hug Natasha. Please take it easy. You might have started work again too soon. What about going back part time?

[EllisB]

A very BIG hug from me too Na7asha !!!! You are so kind and helpful on this site - and my friend (met on this site) and I love you!!!

[dawnhc]

((((((((((((hugs)))))))))))) from me too Na7asha. Sorry to hear you are feeling a bit down.

Dawn
xx

[Katie2002]

Sending you a big hug xxx Chins up chuck!!! xxx

[na7asha]

I don't know about you lot, but I'm miserable and would like a group hug. You can all have one of these.
((HUGS))

[Guest user]

Also meant to say how much I appreciate alll the good wishes and positive thoughts sent my way when I posted on my positive scan results. it means a lot to know that others are thinking about me. Pamx

[Guest user]

Lisa this seems a very extreme reaction if it is secondary to arimidex. I would bw concerned that there is an alternative physical reason. If that has been excluded then it could be that your mum has become depressed...understandable in the circumstances! Why not talk it through with her BCN or oncologist. If she has a good GP who she trusts that would be a good alternative.....all will be very used to women who develop depression in the course of cancer treatment.....and antidepressants can make an enormous difference......often of course its a bit of a number of things....side effects of treatment....the illness itself....and low mood.

[Lisalauren]

Thank you both......
Has anyone taken arimedex and had constant tiredness and weakness?
My mum is always in bed she only comes downstairs once or twice a day for 5 minutes and when she does come downstairs she is extremely irritable and says she wants to go back to bed. My mum was the picture of health until she was DX always out and about with friends day and night and now I'm so worried for her mental state as well as her illness.

[Guest user]

LisaLauren, she should definitely mention it to either the onc or a nurse-specialist (or any other medical professional she happens to see). Even if it is a normal side-effect, they might be able to give her pain-killers or recommend a cream to stop it hurting.

[lizcat]

Lisalauren - it's probably a side effect of treatment but do mention it to the onc. Better that than to fret about it.

[Lisalauren]

Bump

[Lisalauren]

Hi ladies
My mother who was DX last month with BC together with bone mets has been feeling terrible since a 5 day course of rads and then a zometa infusion. The last few days she has been complaining of tenderness on the top of her skull , she explains the pain as if it was a Chinese Burn!
She was DX with a tiny bone met to her brow bone .
Would anyone know if this might be a side effect of the treatment or would this be something we might need to tell the onc.
My mother is also on Arimedex.
Many thanks

[EllisB]

Thank you Dawn! That's just the sort of info I need! Will go on an internet search now!!
Thank you Claire - and good luck with work!
xxx

[dawnhc]

Hi EllisB,

I have tried most types of vacuum cleaners and by far the best one so far is my current Miele. I have quite a large floor area to cover and much of it is tiled which is why I chose the model I did. It has an additional tool for cleaning tiled/hard floor areas which is much wider than the carpet one. It does collect dust into bags (pain really) but the bags are larger than the average ones. If you are all carpeted and with not too large a floor area to clean then most of the pull along cylinders would be ok - it depends which make you think is best or do a Which? search. I found the uprights very difficutl if you have spine/hip problems.

Dawn
xx

[myfanwy18]

Hello everyone,
Pam, I hope, but am sure, you will enjoy your holiday.
EllisB, I hope the faslodex works for you.
Well, after an op in April (hysterectomy due to BC spread), a summer of chemo and thankfully a good scan last month I'm returning to work on Monday. Just the mornings, Monday, Wednesday and Friday. I don't know how many hours I'll be able to do but like the idea of working perhaps just three days if we can afford it. I hope the arimidex works and my scan on the 30 November shows all is stable, fingers so very crossed!
Val, hope you are ok, thank you again for all your support, it is and has been very much appreciated.
Love Claire x

[EllisB]

Thank you Lemongrove - as usual you are a mine of information! I will ask about Capecitabine and if the faslodex doesn't halt things I will definitely ask for a biopsy - as I have nodes on my chest too.

[scottishlass]

Herbgarden/Pam, I have sent you a P/Message in case it does not show up on your home page! Val

[Lemongrove]

EllisB, yes I've had faslodex (after Letrozole and Exemestane failed to halt progression). It works slightly differently to AI's in that in addition to inhibiting the production of aromatase (which the body uses to convert androgens to oestrogen), it actually reduces the number of oestrogen receptors on cancer cells. It does work for many, but sadly not for me. When they did a biopsy of a secondary node in my chest, they found my cancer had changed it's receptor from oestrogen receptive to Her2 receptive. Consequently I'm now on Herceptin and Zometa infusions every three weeks, and an oral chemo called Capecitabine which I take twice daily.
Hope it works for you, but if not, why not ask if they can do a biopsy for you to check whether your receptor has changed - because it's not always a case of ER+ cancer simply becoming endocrine resistant.

Oh one further point to consider if you're experiencing rapid proression. Faslodex/Fulvestrant takes a while to get going (they will give you three loading doses), so you might want to discuss if an oral chemo such as Capecitabine, would be preferable, as it works much faster. Also I have found the SE's more tolerable than Fulvestrant.

[EllisB]

Hi Everyone,
Katie - I have pain a day or so after my zometa - and so do lots of other people - very achy - but as Nicky says it's best to ask the docs.
A really mundane question ladies! I need a new vacuum cleaner as I can no longer push mine around very easily (upright hoover). I've spent ages looking on line for some advice - obviously I need a light weight one - but one that works. The cylinders seem lighter than the uprights - but is it better for dodgy hips to 'push' an upright or to do all the bending and drag a cylinder?? I know the best option is to get someone else to do it!!
By the way has anyone had faslodex? My spread has gone from one side of pelvis to spine and ribs and the other side of the pelvis in only 6 months - so the onc has taken me off exemestane (already had tamoxifen and arimadex) She doesn't want to try letrozole as it looks like the AIs have stopped working. If faslodex doesn't slow things down she will try chemo. (Have reduced working week to 3 days as a result - but do need a new vacuum cleaner!)
Hugs to all boney ladies x

[Katie2002]

Brilliant news on your results Pam!!! It was great to hear. Have a fab holiday x

[nicky08]

Hi boney ladies
Pam - great news, long may it last. Enjoy the holiday, I'm sure you will now!
Sue (Amysmum) Sorry you have had to join us, none of us want to be here but as the others have said we do have a lot of knowledge amongst us and can help and support you as best we can. You may have trouble getting the Bondronat tablets as they are very expensive for the PCT and chemists don't automatically stock them. If you ahve a repeat prescription it's wrth getting it in early before the next lot is needed. Also, when I started on them some 4 years ago I got terrible wind, 'luckily' of the burping kind, but it did cause me a lot of stomach pain and I almost gave up and went back onto IV bisphosphonates. However it did get better although I still burp a lot - and this is from someone who never burped! The time you actually have to leave is a minimum of 30 mins but most of us,as Lucinda said, leave an hour, this is to make sure they are absorbd properly. Boy, am I gasping for my cup of tea by then 😉 Good luck with the pain and rads, I haven't had either yet so can't help out there, and do caom back here for help, support or just a chat or a moan - we are a very friendly bunch and do know exactly what you are going through right now.
Katie - I sometimes get pains in different places but I always think if they get better during the day they are unlikely to be spread as that would be a constant. Also if a pain doesn't go away at all for about 2 weeks it's worth checking out with your team, but yours sounds like it's shifting around.
Hi to all other boney ladies, hoping you are keeping well.
Nicky xx

[Lemongrove]

Herbgarden congratulations on your results, and thank you very much for posting (found it very encouraging). Your holiday sounds wonderful, and I hope you enjoy every minute.

[lucinda]

Good news Pam,have a really good holiday.Nice to hear of another stable mable xxx

[Guest user]

Hi Ladies,
Just posting to say I got MRI results today and all mets in my vertebrae are stable since commencing on capecitabine in Feb (also on zometa). I was very relieved and I can now look foward to a holiday we've booked mid nov.(cruise from venice to barcelona with a few days staying at beginning and end of the cruise. Long may the stability continue! Pamx

[lizcat]

Great news, Pam !!!! Enjoy your hols.

Liz x

[Guest user]

Thank you for the warm welcome.
I picked up the tablets today. It took trips to 2 chemists as Asda was out of 2 of them and then the co-op was a bit low on one too, so I have some tablets and an IOU.
I am indeed on a Bosphosphonate (Bondronat), Calcichew (a calcium and vit D3 tablet) and 10mg Zomorph. I'll see how I do with the morphine. It looks like a low dose, so hopefully I won't be too drowsy. It does say not to drink alcohol, which is a bit of a shame.
It is good to hear that rads have worked for others, but I won't be too surprised if I get a bit more pain first,
Sorry I forgot to sign my earlier post - other forums I post on I have a sig, so I tend to forget.
Sue

[Guest user]

So sorry Amysmum you've had to join us - as others have said there's a heap of knowledge here. I've had rads on my spine and hip twice now - different places - and the pain relief has been fantastic - altho be warned it can get worse before it gets better - the cancer cells swell from what I gather, and if they don't have room to do so they get crabby - but then burst and it's utter relief.
I think a lot of people have similar experience with bone mets - they thought I had them in my spine at primary dx, but decided it was wear and tear, and then 18 months later I had pain, scans etc and lo and behold it's mets this time - it probably was first time looking back but hind sights a marvellous thing.
Please don't suffer pain in silence medic wise - or put up with side effects - I was conked out by the first type of morphine they prescribed. After seeing Palliative care man - scary thought but the nicest medic I see - he changed my morphine type and it was like being given a new life. My 2nd rads have now meant I've weaned myself off morphine, but I now know not to sit quietly and suffer but shout a bit and someone will do something.
Nina

[Katie2002]

Amysmum - I'm sorry too that you have had to join us. I am a relative newbie to all of this but I know that you will find everyone on this thread to be supportive and full of good advice. I'm sorry you are in pain but from what I have read from others the rads do work. I was dx not last Dec with bc. At the time I had all the scans and was told it looked like I had wear and tear on my spine. It was all inconclusive but I remember my BC nurse reading over the phone my report stating no bone mets found. It wasn't until after chemo and just before my mx they re- ct scanned me. It was found that the chemo had 'hardened' and changed those areas considered wear and tear hence the bone mets dx. I now am on herceptin every 3 weeks and zometa (a bone strengthening drug by infusion) every 6 weeks. It was all a bit of a shock to be honest. You just have to remember that your onc will be doing the very best for you and tailoring your treatment to you.
This thread and the women on it has given me lots of hope and strength. I sometimes go on Livechat at 8.30 on a Tuesday to speak to others with a secondary diagnosis. It's a good way of asking others advice. There is a nurse on too which is helpful.
Anyway take care x