Bone mets - please join in

[scottishlass]

Dear sweetanimo, I am sorry that the news was not as good as you hoped for. But remember there are lots of treatments ou there to make your life more comfortable and to help with your Bone mets. I had no side effects forom the Zometa except that after the infusion I sometimes needed to go off to bed for a nap afterwars. But sometimes I think it was the mental aftermath more than the actual drug and the following day I was back to normal. I hope the next set of tests give you better news. I am on Femara too and have been on it for almost a year now, after changing from other hormone drugs that I have had over the last 12 years. My treatments have made me much more comfortable. I do take strong painkilllers including morphine. They helped get rid of the pain so were worth tollerating because it took my body a few weeks to adjust to them. If I can help in any way feel free to ask any questions that arise.

To everyone else I hope you enjoy Christmas and I hope that the year 2011 is a better one for all of us. Much love, Val

[nicky08]

Sorry you have had bad results but I hope from reading this thread, plus many others, that bone mets can be contained for many years and, in fact improve, with treatment. Good luck with your first Zometa next week and try to enjoy Christmas as much as possible. I hope from some of the postings on here you will realise that there are many ladies who are living with bone mets years after diagnosis. I have had them for over 2 and a half years now and at my latest onc appointment he told me he didn't want to see me again for 6 months - job done!
Nicky
ps Happy Christmas also to all the boney mets ladies x

[lizcat]

Sorry you got bad results but I hope the zometa,hormone therapy and adcal will help you as they've helped me. Prior to chemo, my bone mets were in sternum, T9, L4, L5 and ribs with hints elsewhere. After chemo, they were still in T9 and ribs but to a lesser degree. I have lived with these for 3 yrs now. When I asked how long I would be on hormone therapy and zometa, the answer was as long as they work and keep everything else in reserve. So fingers crossed you'll be in a similar position, if you see what I mean!

You may have flu like side effects from the first zometa so drink plenty of water while it's going in and have some paracetamol just in case. I only had it the first time but still drink the water each month.

Good luck,

Liz

[Guest user]

Hi Sorry to hear your rotten news. Glad the treatment will be in place shortly. Its never easy but you will get your head around it and fight on - I have recently been told about a tumor on L5 but they are leaving it for 3 months and I am now on Arimidex - I have been told they may hit it with rads if no improvement so will just keep everything crossed til they make a decision. Try and have a good christmas and dont despair there is a lot can be done - lots of love to you and yours xx

[sweetanimo]

Dear All,
Not good news I'm afraid.. The MRI results backed up the bone and CT scans and I do have bone mets in spine L2 and sternum.
Gutted... I was so hoping it was arthritis...

Having my first Zometa next Wednesday and PET/CT scan in new year to double check lungs and everywhere else.
When I mentioned the other options - high dose rads, chemo etc.. the onc said that this would be something they would consider but only if the cancer started to spread more quickly. The Femara and Zometa would be the first line of treatment but that this would not be curative..

I was also advised to take calcium and vitamin D supplements whilst receiving Zometa. I will be getting it every 3-4 weeks and they will be fitting me with a Portacath after the Christmas break (thank goodness!).

At least it didn't come as a complete surprise but I have now got to snap out of 'denial' mode..

hugs
xxx

[myfanwy18]

Hello Ladies,

Haven't posted for a day or two. Have read all your posts with interest and send you all a big hug.

Now to business - can anyone be so behind with Chrismas stuff as me? I'm sat here looking out the window at my car, a beautiful, white soft mound of snow thinking I really should be going to Tescos to get the veg for Christmas. Does anyone know of a Christmas pasta dish??

Love
Myfanwy x

[sweetanimo]

Once again thank you Finty!
I have added it to my list of questions.

Might just ask for a Portacath. The finding of veins was the worst for me when I had chemo/bloods 😞

Anne Marie
xxx

[finty]

Hi Anne Marie

The high dose rads, Cyberknife and radiopharmaceutical therapy are all different. The high dose rads are just conventional rads - the same as they give for palliative treatment of bone mets, just much more of them! I had 20 sessions, whereas I think 5 is the norm.

You can find info on Cyberknife here:

http://en.wikipedia.org/wiki/Cyberknife

There are only a few Cyberknife units in the country - in London there's one at The Harley Street Clinic (where I had all my rads treatment). It is a fantastically precise treatment - will kill the tumour but with no damage to surrounding tissue.

If you have rubbish veins, you might want to consider having a portacath fitted - I have one and it's marvellous.

finty xx

[sweetanimo]

Lizcat,
Thank you so much for your post. I too have absolutely shocking veins so will request that they do the bloods the same time as the Zometa or maybe the could just put in a Venflon and keep it open while waiting for the blood test results?

Great that you can have the Zometa on the NHS, I think it must be another postcode lottery scenario as Wiltshire won't fund it according to the cons...

I will see if they can also prescribe the Adcal tablet (at least I have free prescriptions!)
xxx

[lizcat]

Anne Marie,

They take my blood every month when I go for my IV zometa and do a full blood count including calcium levels. Officially I should only have the zometa once the blood has been tested but as my results are stable and I have really bad veins, they do it at the same time - take the blood and then put zometa in. I have the zometa on NHS and there have been no issues as far as I'm aware re funding.

I also have an Adcal tablet daily to help against osteoporosis. My bone density has improved over the 2 years so that's promising.

[sweetanimo]

Thanks Ann B!
That's reassuring. I will see if it could be done during my PET/CT scan maybe?

Found another more recent article re oligometastis:
http://jjco.oxfordjournals.org/content/early/2010/01/04/jjco.hyp167.full

hugs
Anne Marie
xxxx

[Guest user]

Hi Anne Marie, hope you dont mind me jumping in here, just to let you know I had my spinal mets biopsed under a ct guided biopsy. They gave me a light sedative and everything was over and done with and all I remember is climbing onto the ct scan bed. It was completely painless, I would recommend the sedation. I was worried for days about having it done but happily it was an easy procedure.

Best of luck with your results.

cheers Ann B x

[sweetanimo]

Thank you Finty, you are a star!

This is great, just the kind of information I was after. I will read and digest thoroughly and take to onc tomorrow!

I did have a DEXA scan a couple of years ago and it came back with some hotspots which they said indicated 'osteopenia'. I will ask for another one to compare! They have also authorised a PET/CT scan which I assume will now take place in the new year, where they will look at both the bone mets and the recurrent breast disease.

Is 'high dose rads' the same as 'radiopharmaceutical therapy' or is the latter also called 'cyberknife'?

Re having the mets biopsied, is that possible for the spinal one, or wouldn't that be a little dangerous?

Hugs and thank you once again!
Anne Marie
xxxxxx

[finty]

This link it to the publications from Andersen - you can sign up to receive the latest research, also case histories of bc patients that have taken the curative route:

https://www3.mdanderson.org/subscription/index.cfm

finty xx

[finty]

Hi Anne Marie

Here is the link to the original Andersen article from 2002, there have been plenty since, will dig out links when I have a minute:

http://jco.ascopubs.org/content/20/3/620.full

This gives a profile of the types of mets that can potentially be cured.

As far as indolent cancer is concerned, I'm not sure if it can be diagnosed as such, just determined by observation. But if it has taken 10 years to develop, I would think there is every chance it is. About 14% of bone mets are indolent.

Other things you might want to think about:

Do you need a bone density scan?

Is cyberknife an option to destroy the bone mets, failing that high dose rads?

Can you have the mets biopsied, as mets are not always the same hormone profile as the primary cancer? I suspect a 10 year gap makes it more likely to be different.

Is Avastin an option?

Just going to read your link for question 3). Also, suggest you read Lemongrove's post on the Inspriring Stories thread - very interesting.

Good luck xxxxxx

[sweetanimo]

Dear All,
I'm getting my spine/sternum MRI scan results tomorrow and wanted to have a list of questions ready to ask my onc if the DX is indeed bone mets (which the cons thinks it is). So far I have:

1) do I need a test for hypercalcaemia?
2) are there other bisphosphonates that I should consider (I will be getting Zometa IV while I stil have private health)
3) is radiopharmaceutical therapy an option? (see link below) http://her2support.org/metastasis/bones-liver-lungs/bone-metastases
4) are these 'indolent' bone mets (primary DX was 10 yrs ago)and if so, is there a possibility of a cure?

Finty,
you mentioned the Andersen research - do you have a link to this?

Hopefully these questions will make the onc sit up and take notice!
Hugs and thank you all in advance
Anne Marie
xxx

[saffronseed]

Its really re assuring to hear some of the positive stories and how you have coped with your secondary diagnosis. Thank you all

x

[Guest user]

suziq hi. I have pm you
x sarah

[lizcat]

Apologies to those who 'know' my story already but I thought I would put it down again here and also a few of my thoughts.

I was diagnosed with advanced bc in July 07 and a bone scan at the time revealed(in the words of the consultant radiologist)'extensive' bone mets. 8 lots of chemo were given to me at high doses prior to a mx and anc. A bone scan was done again before rads. In spite of the high dose chemo, there was still evidence of some bone mets but not by any means as widespread. Vascular invasion and micro-mets were also still present. I then had high dose rads to the breast, neck trunk and under arm area. My regime was then tamoxifen but I only had 7 months of this before the side effects proved too much. I then went on to zoladex, arimidex and zometa in Sept 08.

A bone scan in June 09 showed a very small amount of spread in my ribs and since then the bone mets have beeen stable. Keeping my fingers crossed for the next scan this Thurs.

My onc and surgeon have always remained as positive as possible whilst not giving me false hopes - I am aware the disease is incurable, especially as the mets were still around after high dose chemo, but remains manageable at the moment. I will stay on the current drugs until such time as they appear to stop working and then we will move on to other ones and so on until perhaps we run out of options. I'm planning on this being a long, long time off!!

I do believe that everyone of us reacts differently to each drug/treatment regime and what suits one may not suit another person but it is still very informative reading everyone's experiences. When I applied for early retirement, my onc told my employers that 'whilst the condition is incurable, some people can live for many years with the disease but many others do not' and I think that reflects the true unknown nature of the disease. My surgeon also said that my prognosis was not good (20% chance of making 5 years even with all the treatment I'd had)but that I had coped with treatment well up to that stage and he hoped that would continue. He also said that it was dreadful for me to 'suffer such a terrible disease at such a young age'. I was 43 at the time so quite liked the young description!!

I now like to think that I can live as long a life as possible with cancer and that they will have drugs to stall progression to as slow a speed as possible.

Sorry - this has been longer than I intended but I hope you get some sense out of it!!

Liz

[belinda]

Hi, just popping in to say I had over 3 and a half years of remission, no active bone mets, with Arimidex. I've also been on the oral bisphosphonates for a few years now and have many areas of healing. In fact my bones are now in great shape. I was also diagnosed with bone mets from the very beginning, 7 years ago. Sorry I'm sure I've already mentioned all this in this thread but just wanted to say things can sometimes, often, surprisingly get better, often for long periods. I've never asked the how long question.
Take Care all..xx

[Jo_BCC]

Hi saffronseed,

Please do give the helpline here a ring and have a chat, they're here to support you through this. Lines are open again tomorrow morning at 9am until 5pm.

Take care,
Jo, Faciliator

[saffronseed]

sorry meant to say thanks Crawfo64 too... I will have a think about what to do about a Mcmillian referral x

[saffronseed]

Thanks to Scottishlass and MyIu for your responses they are much appreciated. I am a dark place at the moment. The Onc didn't say months - in fact he wouldn't say how long I may have he just said it was 'very serious', so I suppose in my mind I have interpreted it as being months, rather than years. I got the impression there was no treatment I could have anyhow and that if the Arimidrex which I am on isn't working then thats it.....

I need to get my head around it all and get myself out of this dark place so I can think logically and decide what (if there is anything) I can do - ie second opinion, private treatment etc etc... Not sure if that will make a difference but I want to give myself the best possible chance to live as long as I can. x

[scottishlass]

Hi everyone.....yes about prognosis.....I asked and was told I had a 50% chance of surviving 2 years.....that was in the year 2000. I don't think anyone can actually give you an accurate answer. I feel I wasted a lot of time thinking I wouldn't be around and here I am 12 years on and feeling better than I did in 2000.
Oral Bondronate. I have been on it for a year and was on it for a few separate occasions in previous years. In some ways I preferred the infusion because it gave me monthly contact with the ward and the nurses so could talk about any worries, problems etc. Once the infusion was done I was free for a month.
The Bondronate affects you everyday. You have to take it after fasting 7 hours so the morning is best for me. You MUST take it with a LARGE glass of water and not take any food or other medicines for at least half an hour and at the same time you MUST remain upright for a WHOLE HOUR. If you don't it can damage your throat, and you must foillow the instructions for the drug to work properly. I fond the best way for me to deal with the "upright" hour is either to go and have a shower, or sit up in bed and read a book propped up with lots of pillows. It depends how I feel in the morning. Hope this helps. Love Val

[Guest user]

Hi Saffronseed,

You might be able to refer yourself to a Macmillan nurse if there is a Macmillan centre near you. You can certainly use their helpline or the helpline on this site, or there is the breast care nurse who you can find by ringing the switchboard at your local hospital. There is plenty of help out there, you just have to ask for it. It was a bit of a double edged sword for me because until that point I was hoping they would tell me my onc had got it all wrong and there was nothing to worry about.

As far as talking about months not years, are you sure that is what he said. I find one of the problems with a lot of doctors is they're not actually very clear when it comes to giving information. Anyway these days, with all the new treatments around I think it is a lot harder for oncologists to be accurate in their predictions.

[Guest user]

Hi saffronseed & crawfo64,

I'm sorry that you are feeling down and been given bad news.

I've got liver and bone mets and would never imagine where I would be 6 months ago. My bone mets is quite extensive, too (6 or 7 places, can't remember now), but they didn't give me any pain and have showed signs of healing. I did ask for prognosis when my liver mets was dx'ed in April, but my onc refused to tell me. Instead, he just asked me to concentrate on my treatment. Really struggled with the chemo to the point of nearly giving up, but was pervaded to continue. The scan at the end showed that both liver and bone are stable. So, it was all worth it. Of course, there's always the worry at the back of my mind that what if something shows up at the next scan... But most of the time, that's exactly where they are - at the back of my mind.

I'm current on IV Zometa, Zoladex and Arimidex. Tumour Marker has been going down for 3 months in a row since chemo stopped. So, looks like it's working. But still need a bit longer to know for sure.

crawfo64, oral zometa can be as effective as IV if it's taken according to instructions. Most people don't do that, therefore it won't be absorbed properly and not as effective. I'm not very self-disciplined in that aspect, so am staying on IV for as long as poss. Also, the last time I saw my onc was 2 months ago and won't be seeing him until another 2 weeks. So, that's a 2.5 months gap! Was feeling a bit vulnerable initially, but really enjoying the little bit more freedom I've got now 🙂

saffronseed, I remember how my onc reacted when my liver mets was first discovered, all doom and gloom. He was all very negative, "if this doesn't work, then we can't do very much". Then at the follow up appt when we were discussing treatment plans, he changed his tone of voice because he realized he upset me last time. "Let's see what happens, there're still a lot we can do to help."

That turned out to be a longer post than I intended. Well done for reading it to the end.

Hope you both feel better soon. Lots of love and hugs to you both. xx

Finty, as for using radiation to destroy bone mets, asked my onc before. In my case, I have more than one places in the spine and spine is quite sensitive, so not a good idea for high dose radiation. I did have the max allowed dose of rads to breast to delay if not stop it from coming back.

[saffronseed]

Hi Crawfo thanks for your post. I agree entirely with you in a way I wish I didn't know. I actually asked for the bone scan and wanted it for peace of mind - instead I get this news. I got the impression from my onc it was months rather than years! I suppose in a way at least I have chance to get my affairs in order.

I still haven't really come to terms with what it means for me and how I am going to cope with this prognosis. I haven;t been referred to a Macmillan nurse or anything and feel completely adrift - My husband is being really good but he himself is very upset and I don't want to upset him anymore by dumping my feelings on him!

x

[Guest user]

Hi Saffronseed

My Onc is also very downbeat and negative too. When he told me he said he couldn't tell me how long I had left because I could get run over by a bus tomorrow but I shouldn't expect a full life span. He talked about "few years" but also said it might be as much as ten. It came as a huge shock. I've since talked to the bcn and macmillan nurse and while they've been much nicer about it, they've all given me the same message. Sometimes I wonder if it would have been better if they hadn't told me how bad it was. Wouldn't it be better to live in blissful ignorance until the worst happens.

[Guest user]

Hi cromcrab , i also live in coventry i wonder if u are being treated at the Arden Centre.
I was also on FEC chemo for my breast cancer my last treatment was 28th dec 2007. Mine has spread to bones, and yesterday had a single high dose of rads ,the second lot in 6 months.
Hope you have a lovelly xmas. All the best Suzyq18

[Guest user]

Also, my mets are extensive, (onc's word not mine) and are in the skull, pubic bone, ribs, middle and lower spine and thoracic bone. A few weeks ago I was in a good place mentally. I knew the prognosis could be better but I also accepted that it could be worse because thankfully I don't have soft tissue mets. Now I find myself fully expecting my next scan to show that it has spread to a major organ. I have no reason to think it should have except that it could. I hear people saying a positive attitude helps but at the moment all I feel is negativity. Hopefully things will get better.

[saffronseed]

Hi everyone - just thought I would pop in to tell you my news - unfortunately it is bone mets on my spine. My Onc was quite 'downbeat' and said I have had all the chemo I can have and it needs to be treated with hormone theropy which i am on (Arimidrex) - so you can imagine I am feeling distraught as the moment and it does seem that there is no hope at all. I know there are many ladies on here who have survived many years but I got the impression from my Onc I won't be one of them as my mets have come since my initial treatment for primary and come within 3 months so he said that is very serious... I have another appt with him in one month when he is going to review my previous scans but I don't think there is going to be any change in his prognosis. sorry if I am being gloomy but at the moment thats how I feel.

[Guest user]

Hi

Treatment is oral biophosphonates and hormone therapy, zoladex and some another drug I can't remember the name of. The surgery I was referring to was a right mastectomy because as well as the large lump on the left chest wall now reduced to the aforementioned "thickening", I also had a smaller lump, (now gone or at least undetectable with a normal breast exam), in my right breast and nodal activity there. I'm sorry, I suppose I am just very negative at the moment. I realise there is no point worrying about something until it happens but it's hard to put that into practice. I've also just been swapped from infusion to oral zometa earlier than planned because of pain around my hotspots which my onc tells me could be caused by the infusions as I was virtually asymptomatic before starting treatment. I'm worried that the oral won't be as effective as the infusions but she assured me this wasn't the case and who am I to argue when I have no information other than my paranoia.

[finty]

Forgot to say, it may not be the case at all that your bone mets are not going to go away. Many ladies here have had bone mets that have healed and not returned after treatment. Other mets may have emerged, but it is entirely possible to destroy a bone met permanently with high dose radiation, others respond very well to a combination of hormone therapy and bone juice. What is your hormone status?

finty xx

[finty]

Crawfo64 what treatment have you been offered for your bone mets? I think I remember you saying you've had chemo - is the surgery you refer to for the original lump or for the thickening? Also, how many mets do you have and do you know roughly what size they are?

finty xx

[Guest user]

I'm not sure how I feel today. I had an appointment with my onc yesterday and after seeing her once every three weeks for the last six months she has said I won't have to go again until February. Not sure if I should be worried that I won't have regular consultations or pleased that it is a sign that things are settling down. I've still got what she describes as "thickening" on my left side which is where I found the initial lump and of course the bone mets aren't going to go away but maybe this is the start of "my new normal" as someone described it, (sorry can't remember who it was?) One thing that concerns me is that before the bone mets were discovered, the breast care surgeon was talking about surgery but that doesn't seem to be part of the equation anymore. Is it not worth it because I'm going to die anyway. I really don't want all these negative feelings because how ever long I've got left I want to spend it in peace.

[Guest user]

Belinda you are spot on! We are very central here. x Been feeling a little morose today 8-(. Probably chemo blues.
x sarah

[belinda]

Hi all, some of us, sadly most are no longer here, did meet up in Coventry a few times. It seemed pretty central (is it? I'm not too hot on geography!) and easy to get to..we had some ladies from Scotland join us. We hired some hotel rooms and had an evening meal the first night, (talked for hours afterwards!) had breakfast together the next day and then we chose whether to leave that morning or stay a bit longer. I remember jennywren took some beautiful pictures of the new cathedral the next day.
Val I have always admired your foxglove hat. 😉
x

[scottishlass]

Hi Girls, I am flying off to France ( all being well) at the very end of March for 2 weeks. I would like to meet up with you all but am worried as March is a long way off and I have elderly parent problems. I would hate you to travel so far if I couldn't join you. I would LOVE to meet up with you if you would like a visit to this wonderful part of the world. Will keep posted via this site. Hugs for suggesting it Sue. Fingers crossed we meet up like you suggested. Love Val ( PS I don't look like a foxglove!)

[Guest user]

I like to read the postings although I haven't previously posted on this thread. I am in the same 'fortunate' position as Sue having bone, lung, liver and now kidney mets.

I find the idea of a blitz approach wonderful for those with the opportunity unfortunately although mine were discovered with primary they were already well spread and large as well as tending to progress. I hope people who can get remission do and those who are progressing continue to get support and advice as needed.

I would be a keen traveller subject to health and weather conditions too.
Wishing you all a well christmas
Lanny

[Guest user]

Hi all
Sue, it would be great to get to Edinburgh to meet up. It's a lovely city. I went there years and years ago as a student. How about planning to descend on Val March ish? What do you think Scottish Lass? Since I am in the Midlands I shall have to book a hotel, oh how awful for me lol. This good be a great event and something to look forward to after onc has finished poisoning me for a bit.
x sarah

[SueCheshire]

Hi Julie

I'm totally aghast!!

Sue x

Sent you a message

[juliet66]

I am aghast !!

[Guest user]

Ladies, all your comments are certainly valued by me although I don't always comment, I read the posts with interest and find the different opinions and experiences very valuable. Its sad that sometimes the best place to find out things is on here from others going through this horrible disease rather than being told by "the professionals" so I thank you all for your experiences and thoughts. Keep posting everyone ! All the best, Debbie x

[Lemongrove]

Thank you for your comments Jo BCC.

I found the comments of Juliet66 unpleasant and disrespectful. I had not posted in an aggressive way, I had simply made a fair comment about Doctors who had refused treatment to one of the site members.

[Guest user]

and Sue if you are in your van again in Chester, please come along and meet me...you would be VERY welcome.

[Guest user]

Hi Julie, Val, Belinda & Sarah

I am in the 'fortunate' position of qualifying to post on the bone, lungs and liver mets threads and I value the input from you all.

I think we probably all feel angry about our situation at times, I certainly do. But I do get a lot of inspiration and support from you all, long may it continue.

By the way Val, its b....y freezing here and we have snow too, but not as much as you. Tesco have just delivered my shopping, bless them, battling through the snow and ice and I have just sent OH up to get the bed warm!!

One of my New Year resolutions is going to be to get up to Edinburgh to meet you Val, anyone else fancy coming?

Happy Christmas girls!

Love Sue x

[scottishlass]

Hi Sarah, good to have you posting too. Surrounded by snow here and we are all getting just a bit fed up with it. January and February are usually our worst months in Scoland....surely it cannot get any worse or continue like this....what happened to global warming?...Wishing you all a Happy Christmas and may we all be here to celebrate next year too. LOve to all, Val

[Guest user]

Hi all
i find this thread interesting reading and very pertinent to my condition. It's good to see Belinda, Scottish Lass, julie and everyone posting on here, and I have taken a great deal of comfort from it
x sarah

[belinda]

Hi Val, this year has just flown by. Hope you are not snowed in. We have freezing fog and ice here but the countryside looked beautiful tonight, clear sky, silvery moon, magical.
Have a very Happy Christmas..xx

[scottishlass]

Good to see you posting Belinda. You are another lady I have never met yet feel that I know. Sorry you are chemo fatigued. I am just plain fatigued but not on chemo. That is a full year I have not been on chemo....where does the time go. Keep in touch. Miss your posts but pleased to see you came back even after your cancelled one. Much hugs, Val