Bone mets - please join in

[belinda]

Hi Julie, I love reading your posts! I have real doubts about cure stats so I'm staying on the sidelines (I'm a bit chemo fatigued this week)..reading all with interest though.
xx

[scottishlass]

Julie, Keep coming on here please. You have not upset me in the slightest....the very opposite. Love Val

[juliet66]

I am sorry if I have caused any upset. Having bone mets myself, I really enjoyed reading all of the posts.

Julie

[scottishlass]

Thank you Jo, I am quite sad that there has been upset on this thread. Because of the title of the thread "Bone Mets" it is the thread that I feel is appropriate to me the most. I have had bone mets for almost 12 years and when I was first diagnosed I thought there was no one that I could talk to about my worries and concerns as I did not want to upset "new" cancer patients who were in a different "plkace" from me. Can we please draw a line under this and start again. I would personally hate to lose this thread and the closeness I have had from other users. Love Val

[Jo_BCC]

Ladies,

As this thread seems to be getting a little heated, please can I remind you all of BCC's Community Guidelines when posting on these forums, in particular points 1 and 2:

1) Be kind to each other.
Many people using the forum are going through difficult times. A few words of kindness can go a long way. Be especially nice to new posters – it can be very nerve-wracking to post on the forum for the first time.

Give each other the benefit of the doubt: it can be very easy to misinterpret other people’s comments, especially when read or written in haste. Sarcasm and humour are particularly easy to misunderstand.

Please don’t post comments just to annoy or inflame other users.

2) Celebrate difference and disagree respectfully
A wide range of people with very different experiences use the forum. Differences and debate are very welcome, but this is no place for personal attacks. Please make your points politely and respectfully. Equally, be prepared for people to disagree with you and try not to take it as a personal attack when it is not meant that way.

A couple of tips suggested by forum users:
- “Think before you submit” – if you disagree with a post, think it over before you post your response. Try drafting it first, then read it over to make sure what you’re saying is clear and respectful.
- “Attack the post not the poster” – that is, disagree with the points made, but don’t be rude about the person making the point.

Kind regards,
Jo, Facilitator

[juliet66]

.....and my use of the phrase 'aggressive stance' was not referring to an aggressive approach to treatment, rather aggressive posting (ie lazy defeatists...)!!!!!

To be honest I feel that people are not allowed to have an opinion other than the one certain people have. Practise what you preach comes to mind....end of !!!!!

I also feel that 'vunerable victim' is a bit much, talking about those that do not have the energy, information or drive to cause a fuss.
Surely the role of this site is to provide such information and not to shoot people down in flames and call them vunerable victims.

We all want a cure and I honestly do not understand how people can react like this, pulling other people and their choices down!!!!

[saffronseed]

Hi Finty thanks for your comments - You are right of course I would want to be certain that I was getting the right treatment I will ask about the trials at my meeting tomorrow.

Lemongrove - I mentioned in my post 'agressive approach' this was around the treatement regime not about the opinions/posts - I hope you haven't misunderstood what I was trying to say.

I welcome eveyones views on this matter and find it valuable to hear about different regimes.
x

[Lemongrove]

One more thing I forgot to add. Could we please have a little more tolerance of each others view points, and mode of expression on this site. Because I've noticed that whenever anyone posts a suggestion that maybe the treatment we as cancer patients receive is sometimes not as good as it could be, or that perhaps there is a better/different way of doing things, it always invokes a hostile attack - which amounts to, don't like what you're saying, shut up and don't rock the boat.

These attacks are frequently justified by reference to the word aggressive. For example, they say the post is aggressive (because it could upset patients, or undermine confidence/trust in a physicians), or that the person who has written the post has adopted "a very aggressive approach", because they have insisted on a different course of treatment. In short, the word 'aggressive' is used to try and silence view points that some consider challenging or discomforting.

In my view, everyone is entitled to express their own opinion, even if the viewpoint is challenging or discomforting. However, if someone suggests that there is no right or wrong way to treat metastatic cancer, this is clearly a debatable point -because there is evidence that this is not so, and even Doctors refer to the curative route as the "gold-standard".

I appreciate that most cancer patients want to trust and rely on their physicians, and could feel very uncomfortable reading that in some cases they're not getting the treatment they deserve. But this is not a reason to try and silence others. Remember there are good and bad in every profession, and we also have miserly PCT's and NICE trying to block funding for decent treatment - so it's vital that we have as much knowledge as possible (even if it's unpalatable). After all, just because someone is a cancer patient, doesn't mean they should allow the words vulnerable victim to be stamped on their forehead.

[finty]

Hi Saffronseed

I have asked about trials, and will certainly consider joining one later if this treatment doesn't work. I would only consider one now as an addition to a proven treatment, not instead of - later on I might not be able to be so choosy! And of course with a blind trail, there is the risk being in the arm that doesn't receive the treatment - so you need to be very sure the alternative is acceptable.

Just to be clear, the fundamental difference between the two regimes that we are debating is the conventional regime of leaving the mets in place, and controlling them as far as possible with occasional rads, hormone therapy and bone juice. For most this seems to result in a gradual progression, often some surgical intervention to support the spine or hip replacement etc, and unfortunately for many, spread beyond the bones. If the mets are early enough, the regime that Andersen and Charing Cross follow is to have chemo and then completely remove the mets either through surgery or strong rads, and then follow up with hormone therapy and bone juice. Incidentally, they follow the same protocol for early mets in soft tissue too - liver, lungs etc.

Of course it is a choice, and some may want to avoid the chemo under any circumstances. But it does seem to work, and Andersen estimate that up to 30% of patients that are considered suitable for this approach can be cured - I think their definition of cure is complete remission for 20 plus years. The criteria for potentially being in this 30% are that the mets are small, the patient is young (in cancer terms) and physically fairly robust with good organ function, and hormone positive.

finty xx

[Lemongrove]

Hello Nicola,
Yes there are league tables. Both the Department of Health and Kings Fund provide Reports. Also the Dr Foster Hospital Guides, provide a league table that compare like for like - so they are quite useful.

Hello Juliet66. Actually I was very restrained, because I feel quite strongly that Doctors who say, there is no point providing such and such a treatment, because the cancer is systemic, and will just come back, are not only lazy and defeatist, but far worse (for the three reasons I mentioned previously). i would also add, that if you follow the viewpoint of these doctors to it's logical conclusion, it's frankly a recipe for doing nothing - so what are these doctors being paid for?
I don't know why you think I have called into question Nicola's intelligence. I am sure she can be assertive with her physicians, but if Doctors don't tell patients what is available, then it is difficult for them to know what to ask for.

[scottishlass]

I have read all the posts with interest. I have always wanted to know everything about my disease and asked my Surgeon and Oncologist always to tell me me all. I do think they waited for me to ask the questions though.
I think everyone needs to deal with their cancer in their own personal way. Some wish to bury their heads in the sand, some like to know all there is to know. Some want to continue with work as long as possible and carry on as normal while others want to give up work like I did when I found I had extensive mets. I wanted to spend what time I did have with my family while I could. I didn't want to waste the time I did have in work, if that makes sense. I haven't regretted this decision for one minute, because it was the right thing for me.
Some people like to follow the herbal route, or read up on all papers on the subject. Everyone should do what they feel is right for them at the time. These days I do not want to live my life revolving round cancer all the time. I like to forget about it and I do often. But it has been lovely to have the chance to talk on here to other ladies with different approaches. Life is hard at times yet there are so many people living a life that is more difficult than mine has ever been, Loosing a child must be one of the hardest to bear. I hope you all have a peaceful Christmas and may 2011 be a better one for all of you. Love Val

[juliet66]

Finty,

I have always believed knowledge is power and am certainly not against questioning treatment regimes, considering aggressive or 'curative' approaches.
I, like Nicky, welcome the debate and the information. It is just the tone that I object to (not yours Finty).

I was initially misdiagnosed and had to scream, shout and change oncologists (abd hospital). I am not averse to making a fuss, if necessary. However our situations, like our cancer, are not all the same.

We all want the best for ourselves and those in similar situations.
Here's hoping we are on our way to finding it....

Julie x

[saffronseed]

I have been following this thread with interest as I mentioned in my previous posts a bone scan has identified hot spots on my spine and I want to make sure I get the best treatment possible right from the start. It is very difficult as its a case of you don't know what you don't know - but I think by challanging your Onc and asking the 'right' questions as least you know that your views are being aired (if not always heard). I see my Onc on Tuesday so i will be asking a lot of questions. I noticed that there are some trials that I may be able to join - there are two in specific that I would seem to qualify for - has anyone considered joining one of these trials? It does appear it is a different treatment regime - but not the 'aggressive' approach that Finty and Lemongrove mention in their posts.. x

[belinda]

Hmm..I posted some thoughts but then changed my mind about entering this debate re cure and treatments so I've deleted my post.
Have a lovely Christmas everyone. 🙂 x

[finty]

Hi Nicky - sorry you've missed out on the snow, but I'm sure living in Chester has it's compensations - it's a lovely place.

I do completely understand - I think the regime I am talking about is more appropriate for people like me that were diagnosed with secondaries at initial diagnosis, so everything can be hit at the same time. In any case, I do hope things will soon be under control for you.

finty xx

[Guest user]

Hi Ladies

Don't worry I am not insulted. I more than anyone welcome a debate and differing viewpoints.

Thank you Julie for your intervention, it was nice to be called 'intelligent' I haven't felt that for a while! It's made my day :0)

As to my oncology team not being aggressive enough, they were in the first instance. I had 4 X AC, 4 X Tax, 33 X rads and an oopherectomy, which I believe 4 years ago was the strongest they could offer. When I had my recurrance I very much wanted my life to continue as it was. As Julie pointed out I have children and things like a parent looking normal and behaving normally i.e not reducing my quality of life, are so important to children, it shields them to some extent from the horrors of cancer. I realise that I will probably have to face chemo sometime soon and then have to give up my job which I love and makes me part of who I am (I am a reception teacher and wouldn't be fit enough to continue whilst undergoing chemo!)

I hope I don't come across as being defeatist in not going with the fight it as harshly as possible view, I did that before and it still came back and took so much out of me. Perhaps I am being unrealistic wanting to carry on my life as it was, but if hormones had worked there always was this possibility. Like Sarah I hoped that I would be one that the hormones did work for. Chemo hasn't been ruled out! and this time I am being reviewed after 2 months not 3. So quite possibly I would then be given the harsh regime to try and obliterate the cancer.

Thank you for all your viewpoints I do welcome hearing different approaches, lemongrove out of interest you say that charing cross has higher success, how is this quantified, is there a league table that we can access?

Sarah, as to the flu jab, I have one every year since chemo, plus the first time I had a 10 year pneumonia jab (hope to have to repeat it in 6 years)

Finty as to enjoying the snow, Chester is rubbish for snow, it always misses us...just a tiny sprinkling not enough to cover the grass! Enjoy yours while you can! (sorry that didn't read right I meant before it melts! 🐵

Nicola

[finty]

Hi Julie - I think for me the issue is that most patients aren't aware that there is a more aggressive approach to treatment of early mets, with the potential for much longer term survival, even cure, and they aren't being given the choice. I don't know if Nicky was given options, but Lemongrove and I are the only people I am aware of on this forum that have even discussed possible cure with our oncs - in my case because I raised it myself. Most of us when first diagnosed are extremely vulnerable and not well informed, so are happy to take whatever treatment is offered, assuming it is the best possible. Generally people are very relieved to be told they don't need chemo, and won't question it. In most cases these decisions will be taken in a matter of days, with maybe only one consultation.

I am not sure why oncologists aren't giving people newly diagnosed with early mets the option of more aggressive treatments - whether it is a fairly new concept and hasn't gained acceptance yet, maybe it's cost - I simply don't know. But I did get the very strong impression from my rads onc that she thought it wasn't worth trying to hold mets - to her, progression and eventual death was inevitable, and it was just a case of using rads to manage pain as required. I very nearly caved and agreed with her treatment plan - but I decided to give it one more go, and made my case for a curative dose. She agreed not only to do it, but that it had a reasonable chance of success - it was just something that hadn't occurred to her before, and she had never offered it to a patient! I find that quite shocking, but from reading of other's experiences, I think it is a very common mindset with oncs.

I realised when I first raised this issue with Myfanwy that it could stir up strong emotions and upset people - and that really wasn't my intention at all - and I am very sorry that it seems to have done so. But I thought it was worth taking the risk, because I think some of us could have better outcomes if we question more at the start of the process. I wish it were the case that oncologists do everything possible to improve our outcomes, but in many cases they don't - most don't even tell people to lose weight, stop smoking, cut down on alcohol and all the other things that have very solid research showing it improves outcomes. It seems these are all things we have to find out for ourselves.

Anyway, I hope this has provided some food for thought - I thought it was too important not to share with others, even if it isn't necessarily what everyone wants to hear.

Have a lovely day everyone - I hope you're not all snowed in. It's beautiful here in London, and my dogs are demanding they go out for a walk.

finty xxxx

[juliet66]

To call Nickys oncologists a bunch of 'lazy defeatists' is very harsh and frankly a bit insulting. It is up to Nicky to decide how she feels and what she does about it.

Her team have the best information about her particular patholgy. However this nasty disease does not always respond to plan.

You might choose to take a very aggressive stance but that is your choice. Nicky is an intelligent woman who is quite capable of making her own decisions, undermining her confidence in her team is not helpful.

Chemo maybe the best option for some people, but to others who work and have young families quality of life is important.
Obviously we all want a cure and to live. I am sure your advice is valid , well researched and very interesting.........but do you have to put it across quite so harshly...??
If Nicky wants a second opinion I am sure she will ask.

Julie

[Lemongrove]

Hi Nicky65,
I'm not sure I agree that there is no right or wrong way of treating metastatic cancer. If you look at cancer survival rates, I think those Hospitals that adopt what is called a curative approach, tend to have the best survival rates. For example, In America, Anderson MD, claim to have the best survival rate in the US, and Anderson MD were the first to propose that there are a subset of patients with metastatic cancer who are potentially curable (they called these patients oligometastatic). In Britain, Figures produced by the Department of Health, and The Kings Fund, suggest that Hammersmith and Fulham have the best Cancer survival rates - and interestingly, Charing Cross Hospital ( which is in Hammersmith), has a very similar philosophy/approach to Anderson MD.
I'm not sure I would accept being told that radiotherapy is a waste of time because even if treated the cancer would just re-appear. Firstly, between 5-10% of patients with metastatic Breast Cancer go into complete remission, so metastatic cancer doesn't always progress. Secondly, Doctors know that cancer is a disease that gains momentum - so constantly nipping it in the bud slows the rate of progression. Thirdly, it's all very well your doctors saying that it's less harmful to be treated with endocrine therapy, but it's not less harmful if it doesn't work, and the cancer progresses is it? - and as three of your hormone treatments have failed you are obviously aware of this. My understanding is that endocrine therapy only works in about 50% of cases, takes about six months to have any real effect (by which time cancer can spread extensively), and finally, it only works for around eighteen months( on average).
In my case I was offered chemo, because I have bone mets, and Doctors knew that endocrine therapy would take at least six months to have any effect on them (if at all) - by which time cancer could have spread out of control. They also gave me chemo to reduce the number of micro-mets in my blood, and so reducing the chance of further spread. Similarly, they gave me conventional rads to the mastectomy site and Lymph nodes, to stop re-currence in that area, and Cyberknife to destroy the bone mets in my skull. Yes of course mets could still pop-up elsewhere, but then I would expect my Doctors to zap them again.
Frankly your Doctors sound like a bunch of lazy defeatists, and personally I would vote with my feet.

[Guest user]

Hi all
Finty is right about my treatment so far. I am now on FEC 5 waiting for FEC 6 on the horizon on 27th Dec. It seems to be doing the trick so far and then I have more chemo and herceptin. I would have much preferred hormones to have worked, but onc didnt dally for which I am grateful. Will be seeing him on 23rd to see how things are going . Looking forward to being on the other side of chemo, prob early March.
I agree with Nicola, as a normal life is what I haven't got, watching out for people with lurgies, and not being able to eat certain foods etc 8-(. I was looking forward to getting back to work but now realise that I will have to wait a bit. I am thinking of having the flu jab, anyone else had it/ i shall ask onc if I should
x sarah

[Guest user]

Hi Myfanwy and Finty

I think that unfortunately there is no 'right' way of doing things!(and god do I wish there was!) It's not even a case of what is right for one is not for another. As we all can all change too! and treatment may suddenly stop working for some. For me the hormones were shown to work initially as my chest tumour shrank between scans, but then liver mets grew between the next scans, so things can change so quickly It is just so frustrating, I still find it difficult to believe that in 2010 there still isn't a way of stopping this b*****d disease in its tracks!

I do have faith in my docs but I do feel that now I have secondaries that they 'know' there is no cure. I did ask why they couldn't just zap all the areas with radiotherapy and basically was told that now it's in my system it would just reappear anyway. I did ask if my bone marrow would be infected and was told 'not necessarily' but if it wasn't transferred in the bone marrow, it would be in the lymphatic system or blood anyway.

I was told that I was being treated with hormones because if they do work they are less harmful on the body as a whole, but chemo can be held back until hormones don't work. Also many ladies are lucky and can have their cancer contained with hormones for many years. Although I can see Finty's point that zapping it all before it causes too much damage does have some logic to it. Although after 3 failed hormone treatments I am starting to think that chemo is looking likely for me, although if one of the hormones had worked it would have been better for me, as I can forget about the cancer at times and live a more 'normal' life.

Take care all and let's all hope for some major 'curative' breakthrough in 2012!

Love to you all Nicola x

[finty]

Hi Myfanwy - it's such a difficult judgement to make, and I hope I haven't undermined your confidence. There's no doubt at all that the hormone therapies do work very well for some people, maybe even most people, but unfortunately not for all. It's just my personal belief that chemo first is a belt and braces job - clear out all the stray cells first, then let the hormone drugs and bone juice do their work. I think it's different for those having hormone therapy prior to surgery - they will know whether it's working or not by monitoring the primary tumour, and if it's not working can switch to chemo quickly. Cromercrab was in this position, but it didn't work and even during the short while she was on hormone therapy her bone mets got worse, and she is now on chemo prior to her mx. But if you've already had surgery, and the tamoxifen isn't working, you might not know until another secondary shows up. In terms of the Andersen research and potential cure for very early mets, that would only apply to those having chemo and rads in addition to the other treatments.

I don't know about marrow transplants - I know it's very common for leukemia, but I've no idea if it's practical for bc.

Val - I'm delighted your results were good. I got good scan results this week too - just so sad that others on this thread are not doing so well at the moment.

finty xxx

[myfanwy18]

Hello Finty

We've chatted before about bone mets and particular types of treatment. I have to say I was quite worried when you said I should push for aggressive treatment and did bring this up with my new onc a couple of weeks ago. I know that everyone on this site seems to be told different things regarding treatments but my onc said he wanted to leave me alone as much as possible!? - I said can Tamoxifen and bone juice really do the trick, he said yes, (I've thought about you over the weekend) and your very similar to another patient I have whose still here 11 years on. My onc is very senior and has a wonderful reputation so actually I willing to believe him - I did mention the cyber knife stuff and cure - he said, look, studies have been done and if BC cells have spread to bones they are in all probability also in the marrow.

Although Finty this got me thinking, if they can clear it from your body then perhaps bone marrow transplants are what we need to remove all traces from our bodies. I don't know, just a thought!

Hope the above is not too negative.

Have you been snowed in - we have here but it does look lovely.

Lol
Myfanwy xx

[scottishlass]

I have never had to push for any treatments and have every faith in my Doctors. I first had Pamidronate around 1999 and this took a long time to go through. Then when Zolidronate came on the scene I went on to that one and it was much quicker. I only started Bondronate when I was having chemo. This was at my own request. I have had rads when the pain became worse in a certain area. My pain management is under control with numerous meds. I feel I could not ask for any more.
I had an MRI scan on Monday and phoned my BCN to ask when I could expect my results. My Oncologist phoned me herself last night to tell me that there was nothing new showing up which was a great relief. I was really grateful that she took the time to let me know as it was in the early evening when she called me and she must have had a busy tiring week herself. I see her again in January. Love Val

[finty]

Frances I do agree with you - I'm fortunate not to have had this experience with my main onc, who is terrific, but I did get the feeling from my rads onc that bone mets are treated as though there is inevitable progression and it doesn't much matter. I pushed for and got a much more proactive programme of treatment - but it certainly wasn't offered. And I have been quite shocked to discover on this forum how many ladies with bone mets are offered very little treatment at all - especially those with very early mets for whom the prognosis could be very good if treated aggressively - and yet this isn't happening.

I do hope the Tax does the job for you.
finty xx

[Guest user]

Just to say that I had Zometa when I was on FEC and only had side effects with first dose and that was relatively minor aches in my legs so I'd say it's best to assume the best if you can... I'm now on Bondronat tablets but am due to start on new chemo soon (Taxotere) that has the 3 week cycle like FEC so I'm going to ask to have the Zometa with that rather than the tablets with messy early morning/no eating regime. I forgot to ask at appt with onc since I was a bit shell shocked about having to have more chemo but liver mets are not stable any more... All your chat about rationing of Zometa concerns me so I will be prepared to push for it.
Does anyone else find that their onc always forgets the bone mets part of the disease? I had shoulder op for tumour in left upper arm and they don't even seem to remember that - onc wrote to my Occupational Health at work and didn't even mention that part of my treatment and seven months on I'm still having physio and can't drive - so it is rather important!!! Sorry for rant but they do not seem to be following through with the bone mets part at all - why do I have to query the Zometa with the chemo - would have expected them to discuss it at the appt.... so wil be having to write a letter since I don't want to be on the Bondronat tablets in case the the Taxotere chemo sets off nausea. Why do I feel I'm the only one with an overview of the different parts of my disease???
Sometimes it feels like hard work getting "the system" to work to your advantage...

[sweetanimo]

Thanks Nicola! Looking forward to the New Year festivities a bit more now!

Will also hopefully be able to time the Zometa infusions so that I can still enjoy my three weeks in New Zealand in Feb. Yay!

Choosing my CDs now for the two hours in the tube!

Keep warm and safe,
Hugs to you all
Anne Marie
xxxxx

[Guest user]

Hi Ladies

I had to push for the Zometa, then had to wait as they wanted me to go on the Zice trial, then I wasn't eligable. So it took me from my secondary diagnosis in April until August to finally get the Zometa. With regard to regularity mine is every 4 weeks because I don't have any other treatment e.g. chemo or Herceptin. I believe that if you have a 3 weekly drug in addition to the Zometa you have the 2 together to save too many hospital visits. When I wanted to go away the oncologist was quite happy to let me wait 5 weeks between.

Anne Marie I don't have any side effects on Zometa not even after the first, so plan a great new Year's party.

Love to you all Nicola xx

[myfanwy18]

Hello Anne Marie,

Loved reading your post - I'm smiling at the moment 'cause my nearest and dearest is playing a Doors CD in the kitchen - he really does wonder why this is happening (BC) to him! I know - men ah!!

Myfanwy x

[sweetanimo]

Hi everyone again!
Thank you Vanessa for your info on Zometa - you are absolutely right, I think the cons was confusing dosage for primary BC preventative with secondary mets so I'd imagine it might be every 4-6 weeks as I have two mets that I'm aware of...

Myfanwy, LOL re the Doors! It also looks like I might be going to Cheltenham for my PET/CT scan which is your neck of the woods!

Just had the BCN on the phone and will be getting the MRI scan results next Thursday and my first Zometa on the 29th Dec so New Years Eve parties are probably not on the cards for me this year!
I am also asking for a second opinion and apparently the onc can do this.

Stopped snowing now and I've been really lazy and done all my Xmas shopping on line (although still waiting for pressies to be delivered!) and sent e-cards to all but close family and friends - sooo much less stress!

Keep warm and thank you all for your support,
Hugs
Anne Marie

[myfanwy18]

Hello everyone,

Nice to read all your posts.

Helen, glad things are going ok.

Val, yes, the snow could be problematic - I've arranged a family get together this Saturday but looking at the forecasts it looks like a white out - I live in Cheltenham - why doesn't it just wait to Christmas Day!

Anne Marie, welcome to this site, I love it and find it very helpful, there are some lovely ladies here with much good advice to offer.

Made me chuckle when you said they played Chopin's Funeral March - perhaps next time they will really try and cheer you up with the Door's 'This is the end'!!!

Sadie, so great to hear from you - I for one did wonder how it all went - think you are talking about the Zoladronic Acid stuff. Actually - if you have seen my previous jottings you'll see I had my first one last Wednesday - it hasn't agreed with me and today I couldn't go into work as I was in so much pain - couldn't walk really - but I do intend to be back on track tomorrow - just more pain killers - apparently as time goes on this particularly tiresome side effect will subside - really hope you sail through it as I'm sure you will.

Has everyone done their Christmas shopping? Feel pretty good as at least I've done my cards!

Love to all.
Myfanwy xxx

[finty]

Hi Sadie

Glad the op went well and hope rads will be kind to you. Yes, you should definitely be asking for bone drugs asap. There are two types - Zometa, which is an IV infusion (most people have it every 3 weeks), and tablets which are taken every day.

My understanding is that Zometa is the gold standard bone drug, but it is expensive and it does therefore get rationed. My insurance company would only pay for 6 months, although I have negotiated another free 6 months from the hospital, after which I will go on to Bondorant (sp?) tabs. I don't know what the standard on the NHS is. But if possible start with Zometa to stabilise any mets, then move onto the tablets. I gather taking the tablets is a bit of a bore - there is a strict protocol about having to be upright for an hour after taking them, to prevent damage to the throat.

Anne Marie - every six months doesn't sound right for Zometa. I have heard of this regime for people using Zometa for osteoporosis, but I think every 3 weeks is much more usual for bone mets. I would definitely query that.

Also, there are side effects to Zometa that you should be aware of - make sure they explain about teeth care while you are on it.

finty xx

[Guest user]

Hi everyone.

I’ve not posted for 4 weeks as I’ve been busy!! I have been in hospital and had L2 removed and am now made out of metal! Radiotherapy started today and so far, do not feel too bad! Just very tired! I just wanted to let you know all went well - except for the food in hospital. I can not believe that they expect you to get better whilst eating that stuff!
I do have a question. My Oncologist talked about bone strengthening drugs – but she has not mentioned these for a while or planned any treatment that fits this description. For those of you out there who have this treatment how soon did it start after your secondary diagnosis? Should I be pushing for it?

Thank you!

Sadie

[sweetanimo]

Evening Ladies,
Another dip on this fairground ride.... apparently the additional FNA cytology test has - "shown up very ER+ve cells which indicate that there is still some recurrent disease in the breast" said my cons on the phone to me this morning.. He doesn't think surgery is an option at the moment as it is so small and probably slow growing, but agrees that 5-6 monthly PET/CT scans would be a good way forward ("told you so" springs to mind..!) and to also continue with the anti oestrogen tablets (as if I'd stop them..).

I'm now getting my MRI scan tomorrow afternoon to check/confirm the bone mets DX (have already had bone and CT). Val, I will be asking for a copy of the CD and report!!

They are scanning my spine and sternum and it will take about 2 hours!!! Am definitely taking my music in with me as they usually play Chopin's Funeral March..!!

As cons is on holiday next week, I have asked to see the onc for the results instead when I can also discuss the Zometa regime. The cons said it was via IV infusion every 6 months. Is that right??

Just waiting to see what happens weather wise - looking a little dodgy here at the moment... might have to ski to the hospital.

Yessss Finty, I remember the knitted squares for Biafra - mine were just as bad as yours!!

Take care
Anne Marie
xxxxx

[finty]

Hi Val

I was given a CD of an MRI I had on my shoulder last year. It was done privately, so maybe that is why. But I have only ever seen the CT scans and bone scans by peering at my oncologists computer screen.

I agree with you about info overload - I got my scan results on Monday and there was so much information, I should have taken notes, and I'm now confused between what showed up on which scan. I think I will ask for a copy of the radiologists report.

I hope the results will be better than you fear. finty xxx

[scottishlass]

Hi Everyone, I have just spent ten minutes reading everyone's posts. I had my MRI on Monday and it went fine although it did take AGES. I have left a message with my BCN as I would like to see the actual scans. I have not had the chance before and when I go for results I feel I cannot do so as lots to take in. Has anyone on here actually seen their MRI scan? I have only ever seen the printout of my bone scans and the comparison to previous bone scans. Would love to know if you have seen your actuall MRI scans and if you had to ask to do so. Thanks. I am feeling ok just now....not great but not bad...the poor weather forecast doesn't help nor does the worry about my elderly parents during the snow we had. Great to read everyone's update on here and welcome to any new bone met ladies. Love val

[finty]

Sounds like it's all going on in your neck of the woods! And I adore your gingerbread men - my last attempt at knitting was a square for a patchwork blanket at school(do you remember doing that, you're probably too young - I think they went to somewhere like Biafra?) in about 1973. It didn't come out square, and had to be gathered in to fit with the other ones - I was mortified. I briefly flirted with giant knitting needles to make a Dr Who style scarf that were also fashionable in the 70's - I lost interest when it was only about 8" long. I can sew though - despite a tendency to cut out two left sleeves! (I have other talents - promise)

Vanessa xx

[Guest user]

thanks vanessa x
I have just been to the club for my first night out in ages. it was fab. I must give you a bit of background on that. Earlsdon, or 'the village' as locals call it is a place for trendies......well it's where i live innit ! The problem is that in recent years it has become a magnet for the rest of Coventry and going to our local pubs became naff as it tends to get rowdy and so the earlsdon contingent have mostly become members of the WMC on our high street. It is a very lovely place having been recently refurbished. I can meet my neighbours and have a lovely time as it is a members only place.
Oh the joy, and I am still not tired. I shall surely pay for it tomorrow. However, I have just reserved a table at a VERY nice restaurant in Kenilworth as a lunch treat for my fantastic son. he is looking at the menu online as we speak!
Friday, last day of term and I have been invited to join in the staff festivities, this is where the knitted gingerbread men come in handy as gifts. Saturday, a gathering at one of our Indian restaurants, sunday=hockey. Phew.
x sarah

[finty]

Hi Sarah

Really glad to hear that the FEC is doing it's job - sounds like you are holding up well under the circumstances. Have a lovely Xmas

Vanessa xxx

[Guest user]

i have read the article with interest. My onc is persuing a regime of high dose chemo, and looking to get rid of my primary tumour. He does this in view of my age and general fitness. He told me I had a 50% chance of chemo working, after hormone didnt, and fortunately so far I have been in the right bit of the 50%, so much so that he is giving me 2 more doses of FEC than he originally discussed. I have more than one site of mets, and am hoping that chemo has affected them as well as the primary site. I shall be on herceptin, zometa for as long as it is working. I am due to start weekly Tax also. He is throwing everything at this.
I have my trees up, and am looking forward to Christmas. The only downside is that I have to go to the chemo ward on bank Holiday Monday for my bloods 8-( as chemo is on next day. I am looking forward to the time when I don't have to have chemo all the time. Moan moan lol.
x sarah

[Guest user]

Hi Myfanwy,
Just quick message - my bone scan was "inconclusive", CT was also doubtful but MRI confirmed it. When I had my first "bone juice" I ached especially around where my bone met is. I also had flu-like syptoms for about a week. This only happened the first time. All my other infusions have been reaction free and I can go for my 3 weekly herceptin and pamidronate then go straight back to work. If this carries on, life will be bearable.
Welcome Saffronseed. Lots of info and support here. I have one bone met following mastectomy, chem and radio. Not letting it get to me yet!!
Has everyone got their Christmas tree up yet?
Stay warm, girls
Love Helen

[finty]

Hi Myfanwy

If I were you I would want to know exactly what they have seen on the scans, and would ask that the radiologist compares the bone scan and CT scan and ask to see the report. Obviously the fewer tumours the better. The treatment that I was referring to relates to a single or perhaps two small tumours. You may well be in that category. Lots of things that aren't cancer can show up on a bone scan - arthritis, inflammation etc. If you do a little research on how the different types of scans work, it will help you in analysing the feedback you get. For instance CT scans show up solid masses once they are 2-3mm in size, but they can't tell you what the masses are. Bone scans highlight areas of high cellular activity - so really the two scans need to be analysed together. Sometimes an MRI is needed to be sure.

Have you had chemo and surgery for the primary tumour? If not, I think this is something you should consider very seriously. However far the cancer has spread in the bones, it is very important to try and prevent spread to the organs. Although some people have great success with hormone therapy - others unfortunately don't. Chemo could potentially kill any stray cells that have spread elsewhere, and may also reduce your bone tumour(s) - I think I read that chemo affects about 1/3 of bone tumours - it certainly reduced mine.

It's very hard when you are first diagnosed to get to grips with all the information, but it may make a big difference to your prognosis. So I would very much encourage you to find out as much as possible to make sure you are getting the optimal treatment plan.

finty xx

[myfanwy18]

Hello Finty,

Just a thought. I was told by my original onc that my BC had spread to my "bones". I haven't asked where and am on the standard sort of treatment. However, I went to see my GP the other day to update him on things and he read off my computer records that the bone scan was inconclusive but spread had showed up in the CT scan. Does this mean they have caught it early? Does it mean anything at all?

Myfanwy

[Guest user]

Hi i was diagnosed with inflammatory breast cancer in august 2007. had chemo, masectomy and radiotherapy, was doing really well untill april this year , when severe pain to my right hip confirmed i had secondary bone cancer to the hips, lower and middle spine, and groin area. My oncology specialist put me on arimidex (was on tamoxifen before) and lucky for me was picked to take the tablet form of bondronate. I received a week of rads to the areas. things were ok but the pain did not go completly and a recent bone scan showed new hot spots to the pelvis, i am having 1 high dose of rads to the area on monday.Although it is painfull i still get out when feeling ok, i have a wonderfull family and friends, and try to keep positive..although sometimes find it really hard, and sometimes wonder why ! it keeps on coming back .best wishes to bc friends x

[finty]

Good luck saffron seed. If my experience is anything to go by, they take a lot more notice if they realise you are reasonably well informed. And of course if you are not happy you can ask for a second opinion. I know Prof Stebbing at Charing Cross subscribes to the theory that early mets are potentially curable, so that might be a good place to go for a second opinion.

Regarding the actual treatment I had for the met - I was initially offered 5 sessions of rads and finished up having 20!

finty xx

[saffronseed]

Thank you all for your kind words and information - it is so overwhelming to take in all the information.

Finty thanks for the link - it sounds really interesting but like you say I suspect I will have a fight on my hands. I have just recieved a call and have an appt with my Onc on Tuesday next week - so i will know better then what I am up against and to what extent.

I will let you know how I get on.
x

[sweetanimo]

Thanks Finty,
Just fighting with the NHS to get my MRI scan and results before Christmas...
Will keep you posted.
xx

[finty]

Sweetanimo - have just read your comment, and depending on your scan results, the above article may interest you too.

finty xx

[finty]

Saffron Seed - This is a long article from 2002 and things have moved on since then, but it is a good summary of the issues and the candidates that may benefit from this approach:

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

The best bits are at the end!

finty xx

[finty]

Hi Saffron Seed

I am in the same position as you - a single spinal met, if your hot spot is confirmed as a met, and it might not be. If it is confirmed, you have what is called oligometastases, ie a single distant met which is fairly rare (about 1 - 3% of cases) - and I would urge you to read some of the new research on the subject, specifically from the Anderson Centre in Texas. I'll dig out a link for you later.

A brief summary - it is now believed by some oncologists that it may be possible to cure a percentage of bc patients with oligometastases with the appropriate treatment, or at least achieve much longer term survival. The two centres with the best bc survival rates - the Anderson Centre in the US and Charing Cross in the UK, are now taking this approach. It involves the most aggressive treatment possible both for the primary bc and the met. So for the primary bc the protocol is surgery, chemo and rads, and for the met surgery and/or high dose rads, followed by targeted therapy - hormone therapy, Avastin etc.

The high dose rads is controversial as I expect you are aware, a high dose cannot be repeated. I had an obliterative dose on my spine, with the expectation of completely killing the tumour, with the understanding that should it be unsuccessful and I ever need further rads to the tumour it would probably be possible to have Cyberknife - either through my insurance or self funded (it's very expensive, and I am aware for many this will not be possible).

I started my treatment last October and finished rads in July. I am now on Avastin and Zometa, shortly changing to Femara and bone tabs. I had scans last week that show a dramatic reduction in activity in the met and no new areas of concern - bone scans are imprecise, so it may take a while to know whether the met has completely disappeared.

You may think this is a high risk strategy and not for you - I did the research myself and asked my onc to go with it. Usually the treatment for bone mets is essentially palliative - hormone therapy if appropriate, bone drugs and rads only when required. My onc agreed I was a special case and it was worth a try. I thought I had a one off chance to intervene and change the course of my disease, and I'm very glad I did. I may just be disease free.

Please feel free to PM me if you would like further info. If you want to go this route, you may need to be prepared for a bit of a fight with your onc and to go armed with research.

Good luck

Finty xxx