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Bone mets - please join in

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Re: Bone mets - please join in

Hot, nasty humidity! It's been like this for about 3 weeks! You don't even want to go outside. I hate being inside. I would prefer to be out grilling, pina colada in hand, tiki torches lit, playing some games. Haven't had a dinner outside in weeks. Had a couple events we wanted to go too, but just to scorching. Oh well, maybe next year. Supposed to get storms today and be cooler this week.Hoping they are right! 

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Hiya ff.
Very interesting ..I've been on letrozole for eleven months and have a dodgy right knee too which is the other side to problem hip.
I have had this for maybe 30 years on and off as I used to seriously jog in my 30 s !! Yes me jog ! And I used to do Jane Fonda aerobics every day .
My knee for several months feels like I've twisted it too or the knee cap has moved or something.I remember seeing my bone scan and there were suspicious areas on it but not necessary Mets. I sort of shuffle sideways on it but it won't turn !!
Anyway less of my ailments ..hope u have nice weather there ..we've got baked beans weather here ...wet and windy !!
Hugs across the pond.
Xxx
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Carolyn, I know it's the metropolis because this all started 2 weeks after I started it. I just didn't realize it at first. I thought I must have twisted my knees. Til I realized it started right after starting this. I also need new knees. I'm sure that's why it has hit them so hard. It also hit my shoulders and hands too. I stopped the prednisone in case, but also to help me lose some of this weight. I wish I could get off this one heart drug bc one of the SE is rapid weight gain. I started gaining right after I started it. Hoping exercise and some weight loss might make it possible to get rid of it.

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Hiya ff
That's strange as you say you have been taking prednisone ....my hubs has been having that off and on since xmas for a chest infection that won't clear up. He has been having hair loss and his knees ..well they creak so much and give out on him. He says there's healthier knees in the graveyard!!
Maybe you are blaming the wrong thing ..i.e. letrozole / ibrance and it could be prednisone ..hope yr new fitness regime works and who knows you might match Mo Farah in the next Olympics !!Ha ha.
I'm hoping with winter coming to eat healthy and give up choc and McDonalds ..in my dreams !!
Hugs xxx

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PS....No shopping here, too many car repairs!!! Grrrrrrrrrrrrrrrr!!!!!!!

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Good Morning ladies! I'm going to try and do some cleaning today. I haven't done much housework lately and it shows.I've been trying to adjust to know prednisone! I've taken it for a long time and my energy level is at the bottom of a pit. I have been doing some exercises that my friend gave me. She is a physical therapists. I've been doing them every day for 2 weeks. I even added a few more. I did find 2 that totally kill my knees. It puts the pressure on them. She said not to do them for now. Might be able to do them if my muscles get stronger or some day when and if I get my knees replaced. I'm trying to make a new change in my life every week. This week I'm adding a 5 minute walk 2x a day. I noticed when I go shopping that I always grab a cart. I realized the last few times that I'm not just pushing that cart, I'm heavily leaning on it. I was leaning on it so hard that my arms were sore. I was in the store for about 45 mins and a few other errands. My knees and legs were screaming obscene words at me. I decided I need to start and walk and build up. All of these physical changes in me have been since I took this letrozole/ibrance combo. Also, have been working very hard on my weight. I am diwn 10 lbs. I'm fighting back! You girls having alot of fun shopping and visiting with grandchildren and puppies. No, grandchildren here! I do have 5 grandpuppies.They usually end up visiting for a, bit every week.I have one dog, Maggie. She is a yellow lab. She enjoys all the dogs visiting. FF

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Hiya Jeanette
Fingers crossed ..no more headaches today. Enjoy having Heidi and spoiling her ..all the cuddle benefits but no responsibilities of vets and walkie!
It's my last week with grandson ..he goes back bank holiday Monday so he gets a week to settle into routine ready for school. Can't belueve he's been here five weeks already.
Hugs xx
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Hiya Barton
Sshh ..but I have been dipping into the craft channels too and qvc and pavers shoes but only when I can surgically remove the remotes from hubby and the Olympics !!
No pain or aches from denosumab this time ..it's day 12 and been fine !! Long may it last.
Yes ..it's all about the comfort and a nice chair will b good for you.
C u Thursday
Hugs xx
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Morning ladies. 

Carolyn, no white sandy beach for me either........well not for 20 days anyway (not that I'm counting 😆😎)

Got my little girl Heidi for the day today, love having her she really is like having a grandchild, we spoil her something silly for the day then when she goes home a quick tidy round then relax and wind down! 

Hope everyone is doing okay and having a nice lazy Sunday.

Hugs Janette xxxx 

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Hello Carolyn, no white sandy beach for me! I'm sitting at home watching crafty channels on TV. I was shopping from one of them yesterday - you would be proud of me! Also, the other day, bought a comfy chair for my bedroom as I sometimes like to sit and read there (the pink antique chair is too low, and not that comfy really).

 

Hope the bone aches have subsided.

 

Hugs. Barton.x

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Hello
Just posting here as the thread is so quiet ..it's slipping down the list!.
Sounds like a lot of our regulars are away on hols ..sunning themselves on white sand, Palm trees and being served cocktails by hunky eye candy in shorts !! Ha ha.
Hope everyone is well .
Hugs xxx
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Good morning ladies
Well it's wet here and guess what ..forgot to take the cushions in from patio furniture last night and so all soggy.
And ..for some reason overnight my phone won't link to my e mail's this morning ..been visited by a little gremlin in the night !!
Hope you all have nice plans for weekend .
Xxxxx
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Hiya Jeanette
Glad u have heard from bcn and she is now on your case.
You have the option to have a mr i if u need one. Don't think ct scans do the brain ?
Hopefully the headaches have passed and maybe just a wobble !!
Hugs xxx
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Natalie/Janette,

So pleased your bcn got back to you and that your Onc is prepared to scan to give you peace of mind. I  think it's a good idea to see how things go over the next few weeks i the knowledge that should the headaches come back and you get concerned action will be taken,

Hope the headaches stay away.

Have a good weekend xx

 

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Hi Carolyn, my bcn rang me this afternoon with regards to my headaches, my onc has said if I'm concerned about them she is happy to arrange a CT or MRI, as they haven't been too bad I have said I'll see how I go on over the next month or so and get back to her they persist.

Hugs Janette xxxx 

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Marirose I'm so pleased the info was useful for you, yes definitely mention it to your MS   nurse, with MS  and SBC you sound like an ideal candidate to me. Fingers crossed xx

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Julie thankyou for the information for the cannabis oil I found it interesting especially as I also have MS I shall be asking my MS nurse next month. I am suffering with pains that are linked to both I was unaware that there is a spray that contains cannabis for MS.Lets hope the N.H.S get their finger out and legalise it.

xxx

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Hiya ladies
Short notice but a lady from Facebook secondaries is going to be on itv news at 1.30 and 6pm tonight to be interviewed about afinator ( evorumus) being withdrawn by NICE due to the high cost.
I think maybe a few of you will have had it in times gone by.
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Julie
Thanks for that link ..it's very interesting .
Avrelia
Glad you are coping well with the chemo ..it will soon go by ..assume you are having six sessions of chemo.
I seem to be ok (ish) with the aches and pains so haven't needed painkillers or heat pads but haven't overdone things this week as saving energy for weekend when grandkids all here !!
Moijan
Thanks for the advice 're letrozole and great info for the eribulin ladies Sharon and Helen ..I'm sure they will appreciate it ..can't beat info from real people rather than bits of paper !!
Well just going to enjoy a coffee and custard cream biscuit in the real world but will b popping in to the cyber cafe soon ..no calories there !!
Hugs xx
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Thank you so much. I pray too that it continues. Xx
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Hello, hello, just before going to my second chemo, had to tell you that I was with my oncologist yesterday for the regular meetings before chemo, blood results are fine, and she thinks that the lumps have become smaller and softer (which i presume is a good sign, only after one cycle of chemo). She will book me an ultrasound in 3 weeks time to confirm though. I asked her if she does not mind me going on holiday, she said that it is not recommened for anyone on chemo, but after all we agreed that I may go. Why is that so, because of possible SE?!! I am not that type of person to lie on my back and wait for them to happen... Anyway, I have to by compressive stockings above the knee as she told me, and walk around during the flight, before and after...(3 hours) and drink lots of water. May be that is sensible. Has anyone had a flight between the chemos? How was it if so? Sorry if my questions sound stupidSmiley Happy 

Carolyn, I am sending to you some positive energy and airlike pain killers, breathe deeply and hope you will drive them away!!!

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Re Letrozole

ladies, if its working, think seriously before coming  off it...I was told to come off it after about seven years and the cancer came back-Letrozole no longer works.  To be honest Letrozole was so much easier..could go on holiday, leave the country etc, now im tied to a cannula two weeks out of three, and my veins are hard to find!

 

honestly, weigh up your own pros and cons before stopping, as the bc will get resistant. I also found that Novartis original version had far less side effects than all the other versions.

 

love and Hugs

 

Moijanxx

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For those interested in the cannabis oil I cam accross this article (if I  can get the link to paste here)

 

http://www.independent.co.uk/news/uk/medipen-the-nhs-are-testing-a-cannabis-product-vaporiser-for-th...

 

There is hope yet that the NHS  might one day provide access

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Jeanette
Glad yr headaches have been better and its a nightmare having to chase all the time.
It's been nice here but we have rain and thunder forecast for later.
Well it's day 8 since denosumab jab and I'm not aching too bad despite stocking up on heat pads, deep heat ( well it's the one beginning with v but cant spell it) and ibruprufen. .fingers crossed ...maybe its all the choc and McDonalds helping ...ha ha.
Xxx
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Hi Carolyn, still not heard back from bcn! Which doesn't surprise me to be honest as she has an habit of that. She usually sees her in clinic on a Thursday so will see if I hear from her tomorrow, as it happens head has been okay since Friday so hoping it's just something and nothing. 

Well it is glorious here in the usually rainy manchester 😎 Hope everyone is enjoying the sunshine and keeping well. 

Hugs Janette xxxx 

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Hello Sharon
Nice to hear from you ..I get all the c hemos muddled but I think moijan that posts here regularly is on that one too. Hopefully she will give you some info.
Sounds like a good one if you have to get approval for the expense.
Fingers crossed ..isn't it a pity that ibrance isn't available as in the us ..it's getting very good results ..
Hugs ..nice to hear from you.
Xx
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Carolyn cant really say about cannabis oil as only started taking it two weeks ago..xx..dont think Il take it on chemo.x
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Hi Carolyn iv had very slight progression in my liver Mets.so taken off the exemestane..which lasted about 4months....and obviously didn't work..next plan is oncologist applying to drug fund to get erubulin....which will take about three weeks..any advice anyone on this drug.i won't be have a 100%dose......well got three or four weeks grace....take care sharonx
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Good morning all
The Sun is shining and its gorgeous here ..just what Sumner is all about.
Are you ok Sharon ? You haven't posted for a few days ..how is the cannisbis oil working ..do you feel better for it .
Jeanette ..have you heard from your bcn about your headaches ?
Well I was a lady that lunched yesterday ..three hour catch up with my daughter which was nice .
Hope everyone is ok
Xxx
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Hiya ff
It's hard to know whether the constipated duck walk is the Mets, letrozole or denosumab but needs must!
Xx
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 Carolyn, I lost my hair with primary and hated it....wore my wig all the time. Then I lost it with the Mets in abraxane and said who cares. I very seldom wore my wig. I seriously wore hankies tied on my head. It was summer and couldn't stand the wig! I will probably lose it forever next time lose it. I think I've used all the chemos that don't usually cause hair loss. Yes, I honestly feel worse on this letrozole. I hurt that bad! Plus I can't believe how it's wrecked my muscles for doing steps.  There is another lady on bcmets.org that is having the same problem. I think she is finished with it, but is in physical therapy trying to learn to do steps. I also googled about the leg problems and letrozole . I couldn't believe how many people were complaining of leg issues. I'm nit willing to give up this life line though. FF

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Ff. Can't believe that there are more se from letrozole than chemo ..you should know as you must be the queen of chemo after all these years!!
It's the hair loss that got me with mine but looking back twelve years ..I was younger and fitter and able to tolerate it better.
Hope u r feeling well at the moment.
Xxx
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Ladies who are worried about chemo side effects, I have had many mire side effects from this letrozole than I did with chemo. I had some SE but never the this much pain. I had a lot of pain from abraxane bug the pain was different. Don't be afraid to try chemo, every one reacts differently.FF

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Hello Marie123, glad you are feeling a little better this morning! Hope you continue to improve.

 

Corey - good luck with your first chemo. I know how nerve wracking it is, but once you get the first one under your belt it will get easier to deal with. Just be aware of any possible se's, but I hope you don't suffer from them.

 

Avrelia - good luck with your second chemo, and I hope you get to go on holiday!

 

Carolyn, I hope your bone juice aches subside soon.

 

Hugs to all. Barton.x

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Good morning ladies,

Just want to say a huge thank you to everyone. Feeling a bit better today. I just need to ' run to the hills ' and lick my wounds and be quiet sometimes  . The thing is I feel well and I am not inpain, which is brilliant, but very shocking when I am told the meds are not working.

What a great bunch you all are.

Hugs to all

Marie xxx

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Hey Corey, do not feel that way, yes, true that chemo is said to cause many side effects but that is not necessarily the case with you, I have had only one cycle up to now, but the only serious effect I had is hair loss, and that was a 100% sure since I am not using the cold cap. I have been diagnosed in the end of june, and have had just chemo up to now, since I had 5 teeth taken out and they told me that they will postpone the bone strengheteners till beginning of September. I have been having aches in my back occasionally since November and they have neither got better nor worse, so we will see how it will go on, different people different treatment plans I guess.. Take care everyone

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Hi everyone, I am about to go to hospital to give some blood before my second chemo. Fingers crossed results are fine since I am planning to go on holiday for 2 weeks, and if something is delayed I will not be able to...But I do think everything is going to be ok;-) Black sea, here we come!!! My hair has almost fallen, it is everywere in the house, I was thinking of cutting it with the razor, but my partner said, NO. He had always liked me with my long hair, anyway, my wig is not ready yet, and now I am wearing something like a scarf, which makes my head really itchy, probably because i Still have some hair though. Do you think if I buy something which is pure cotton it will help. If someone can recommend me a shop or a website that would be great. Bought another wig on ebay, but still trying to identify how to adjust it on my headSmiley Happy 

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hi everyone, i now have a treatment plan and i will be starting chemo on next monday so feeling i bit uptight as to all the side effects etc. after bone met was diagnosed oncoligist put me on tamoxifen( as i was going for targeted rads to the bone met) .which gave me slight back ache but nothing major that was just 2 weeks ago now he says delay rads and start on  chemo first .(change of plan again) i had to stop tamoxifen so the cancer cells wake up ready for chemo to get them . stopped on friday and i have aches in back again. does any one know if the ache might be down to stopping tamoxifen.  

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Daisyjane..so pleased to hear your scan news...long may it continue!! x

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Hiya hollymeg
I think you have been very lucky with exemenstance for six years. I'm on letrozole which is much the same ..I can cope with the constipated duck walk and hair thinning though rather than chemo and would b delighted if it works for that long.
Popped to matalan and got all the school uniform for grandkids today .it's selling out fast ladies. Got grandson McDonalds and really didn't fancy it so just settled for a mcflurry..so saved a few calories !!
Hoping the bone aches don't last too long this time ...I think I'm the only one on the planet having probs with denosumab.
Hugs xx
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Afternoon ladies, what a lovely day! 

Daisyjane, great news!! You are now a member of the "stable Mable" club.

Hi Carolyn, so your also walking like a constipated duck are you? I look like a 90 yr old when I've been sitting /lay for any length of time. I put it down to the letrozole though not the denosumab because it only started when I was switched to them last October, I've been on denosumab since I started off with mets in 2014 and have never had any trouble with them. 

Hugs Janette xxxx 

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I've been on tamoxifen and now exemestane for about 6 years now. Been on a adcal for years too as have osteopenia too. I've been told I'm staying on exemestane as it's obviously working... is it though? These mets have developed while taking it, that's what I think anyway. Thanks for your support x
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Hello Carolyn, sorry to read you are getting your regular bone juice aches! I was hoping you would be getting used to it by now, but obviously your body has other ideas! I do hope they don't go on and on like last time! Take it as easy as you can, but still keep moving around. We don't want you to set like concrete! 

 

Hugs, and thinking of you. Barton.x

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Hello Daisyjane, such good news re your scan results! Excellent! Long may it continue.

 

Hugs. Barton.x

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Hi Debbie, so pleased that you had good results from your CT scan! Hope you are out celebrating at this very moment! Take care xx

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Hello daisy
The Adcal tablets are fine ..I have fruity ones too..find they keep me regular daily too!
Jultz and Jeanette
Can I join " the constipated duck club" ? Normally I just get creaky wrists but now the last few days I will qualify for this elite club!
As I am day five from bone juice ..probably those helping it along too!! Find my bum sticks out more when walking ..maybe I can balance a glass on it like Kim karadasha!
Anyway good morning ladies ..Sun is shining and hopefully you are all well.
Hugs xxx
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Good morning ladies....just wanted to let you know that I went for my first three monthly CT scan and review last week and got the positive news that my bone mets are stable.  This was the news I was so hoping for and I just pray that it continues.  My calcium levels (which apparently were normal to start with!) had dropped slightly, obviously due to the Ibandronic acid (bisphosphonates) so I have been prescribed Ad Cal D3 which are OK as chewable and fruity flavour.  Just have to remember to take it at least four hours after my Ibandronic acid and two hours after eating spinach, etc.  Anybody else on them?  I had a feeling that my levels had dropped as I had a tingling tongue and quite a few aches but you never know what to attribute them to do we?  Anyway I thank god for giving me some positive news at the hospital and I am sending out positive vibes and best wishes to all of you today.  Debbie xx

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Hi hollymeg,

I  too questioned if 'just hormonal' treatment was enough/right for bone mets but that was six years ago and I'm still stable on Letrozole, so yes it's pretty satandard treatment and can work well for a good time Smiley Very Happy Have they moved you on to a different hormone?

 

I'm on a different bone juice to you, but the risk of ONJ (osteonocrosis of the jaw) is the same. Whilst it is a possibility to get jaw problems the benefits of treatment (as far as I'm concerned) outway the risks, be careful with your oral health, see your dentist regularly and try to avoid having invasive treatment like tooth extractions.

 

Hope you feel a little less worried. Please ask anything you want, there are no stupid questions, we will do our best to answer xx

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Hello hollymeg
Welcome again and found the best thread for bone Mets as its one of the busiest on the website and means you will get plenty of support from ladies that have no much knowledge .
Yes I was dx with bone Mets last October 2015 ( hips, femur, spine and pelvis) and hormonal treatments like letrozole are the normal first line treatment ...some ladies stay stable on them for many years but I think once it moves to liver lungs etc etc ..then you have to do the big guns chemo stuff.
The denosumab injections ( bone juice !) Are monthly to strengthen the bones and prevent fractures . Also you will b taking Adcal calcium tablets I expect ( mine are tutti fruity flavour and rather nice)
You will b scanned regularly to make sure everything is stable etc.
It's scary and we all hope for the magic bullet to be developed soon but in the meantime we have to trust our oncologists to prescribe the right treatment plan.
Once again welcome to the metsers family.
Hugs xxx
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Hi there, please may I join in. Thanks for the invite Carolyn. I've been diagnosed with mets in my rib near my mx site. Can I ask others if staying on your hormone tablets and having 4 weekly dam??? Injections is normal course of treatment for just bone mets? Sorry don't know the spellings. I was originally diagnosed back in 2009. I'm worried about the jaw rot side effect most. How have you all coped with it? Thanks in advance for any advice you can share x

@finty wrote:

I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!

I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....

finty x