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
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
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
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
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
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
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
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
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
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
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
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
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
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…
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
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
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
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
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
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