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Bone mets - please join in

scottishlass
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Re: Bone mets - please join in

Hi all, My operation date is through and a week on monday (sept5th) I will be in theatre. I get my pre-op on Thursday.
Next week is going to be busy as I have to g to GP for bloods for Zolidronate on Friday. Gosh I am being kept busy.
Not been feeling great but have been advised to reduce my MST as too much morphine is making me feel yucky and very sleepy. Hope you are all enjoying your weekend. Welcome newbies, Val

LYNDYLOO
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Re: Bone mets - please join in

Hi Julie

Just a short message waiting to get picked up by daughter to go to the Metro Centre shopping. Regarding tablets I get them off the ONC which I am on a trial for which is best IV or tablet. I take one tablet a day which I am fine with. I don't have any side effects with them. The only thing I worry about is are they any good. I am back to see ONC in September to see what happens then. By the way when did you get your last bone scan. Mine was a year ago which seems a long time. Speak to you soon. Daughter outside. Bye for now.

JulieD
Community Champion

Re: Bone mets - please join in

Hi broomsticklady,

I'm never pleased to welcome anyone to this thread because of the reason for membership, however I do welcome you and hope that you will find as much help and support as I have.

The main questions I would ask is : where are the mets, how many and how big - are they suitable for cyberknife or other tomotherapy, what is the treatment plan, reasons for the plan as oppossed to other options, make it clear you are prepared to go down a more aggressive/proactive route if suitable. I'm actually only on hormone and bisphos with some palliative radiotherapy but have had more than one consultan t confirm this is the best/most appropriete action for me at moment despite being willing to go down more aggressive routes.
Good luck at your meeting.

Welcome to you too Linnylou, glad to hear you are feeling positive and well. Glad that the combination of traditional and complementary medicines are suiting you.

Re tablet v iv bisphos, they both have their own advantages and dissadvantages, I'm on i.v and prefer that, though my veins don't!! I think the important thing when on tablet form is to make sure your GP is aware of the right dosage for cancer as opposed to osteo patients.

Sorry you're still waiting to hear about op Val, hope they get it sorted soon.

Sarah, hope they stop messing you about so you know where you stand and can just get on with it.

Best wishes to all and hugs to those that want one!

Julie xx

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Re: Bone mets - please join in

Please Ladies, can I very unwillingly join your club please? Initial dx Mar 09, lumpectomy and ANC, Chemo (FECT) rads and arimidex, just confirmed today I have shadow on lung, 50/50 if innocent or cancer, to be checked, and 2 lots in my spine, lumbar and thoracic.

Now awaiting appt at onc clinic and looking for ideas as to questions I should be asking - I've already decided I don't want to just have it 'maintained' I want it attacked with anything I can take!!

Strangely I'm feeling very calm - I was told I may have it in my lumbar area on Wednesday, had CT scan today (privately - 3 week wiat on NHS!) and have verbal results only. However my rock of a husband is away (as I should have been) until late tomorrow and I'm thinking I may well collapse then...

Nina

Linnylou
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Re: Bone mets - please join in

Hi All I only found this forum the other day, and have been trying to read through all the posts but haven’t managed to read them all yet but I would post anyway.

I dx with BC a year ago in August 2010, I had a lumpectomy in early September. Since I had been suffering from some lower back pain since just before I found the lump I had MRI end of September. This showed bone mets in my sternum, T12, L3 and S1 and I think there is a bit in my hip. Since then I have been on Zoledronic Acid monthly and Tamoxifen. After my diagnosis I decided I needed to do something positive so I started doing Tai Chi, Yoga & Meditation. I’ve also changed my diet considerably. All in all I am feeling well and healthy at the moment and have been pain free since last November and my mets have been stable since January. The majority of the time I feel positive about life at the and realise that I am very lucky to be living only 10 mins away from CCO plus WHSC therapeutic cancer care is near by where I have been able to have Reiki and Reflexology treatments. Obviously there are times I worry about the future especially when I think about my husband and young daughter, but I’m doing my best to live in the moment.

Re insurance company funding Zometa treatments mine has already said to my onc that they will only fund for a year. My onc said not to worry as if this happens he will treat me on NHS again. So as lizcat said it would appear to be a postcode lottery.

Sorry for long post. Thanks for starting the thread finty.

Linda

lizcat
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Re: Bone mets - please join in

Hi finty and dugsy,

This may be another postcode lottery thing. I've been on zometa for almost 3 yrs now and it's never been an issue. My onc started me on it when I was switched from tamoxifen to arimidex with zoladex. I had bone mets from day 1 diagnosis in July 07. I will be on it as long as it works and my veins can stand it.

Liz

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hi all, i agree its the morning routine that i dont like with the daily tabs ive just started going to a gym in the mornings, so i get up have breki and wait an hour then go if i have the tabs again ill have to wait 2 hours to go and thats wen my resolve will fail lol

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Re: Bone mets - please join in

Hi Finty,
Just picking up on your comment about Zometa & insurance coverage - I've been on Zometa for 15 months now & have never had any problems from my insurance company about covering it. Have you been having problems?
Dugsy

finty
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Re: Bone mets - please join in

I was told by my onc that when first diagnosed they like to give Zometa IV as it's stronger, but once mets are stabilised then the tablets are just as good, but only as long as the protocols are carefully followed. I'm not completely convinced of this myself, and would prefer to be back on Zometa - but there's a cost issue and insurance companies will only cover 6 months, and I get the impression it's harder to get on the NHS if your mets are stable.

I'm with Val - the morning routine is driving me nuts. I've just returned from a holiday when we had to be up and out at 6.30 every morning - so I was having to get up at 5 every day. Fortunately I'm an early riser, but that was a bit much even for me.

scottishlass
Member

Re: Bone mets - please join in

I have been on the pill form (Bondronate) and the two IV forms (Pamidronate and Zolidronate) . Since changing from pills to IV recently I have found that everyday life especially in the mornings is much improved. I can enjoy my breakfasts again and take my painkillers before I get out of bed so the mornings are much more pleasant as I am not sitting about (upright) waiting for each lot of pills to work. Much better for me all round at the moment.
There is a difference in the dosage for people with Osteoporosis and Bone Mets as the pills for bone mets is taken every day and the people with osteoporosis need only take one pill a month.
I have not been feeling great recently and am still waiting for my operation for my hip/thigh. My pain meds were altered by the Pallative care doctor last week. He increased my MST, put me on patches for pain which I stick on my thigh/hip at night, and introduced Fentanyl for breakthrough pain. But today I have been advised to reduce my MST again as I may be having too much morphine now. Seeing my GP this afternoon. I have been to a funeral this morning at 9 30. I am now heading back to bed so that I can rest/sleep before I have my GP appointment. Wish I could feel more energetic and have a head less fuzzy.
Have a great weekend all. Love Val

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I don't know of any research about any differences between IV and tablet effectiveness but my experience is that I was on the tablets and getting awful hip, leg and arm pain so was given IV and all pain disappeared within 5 days - even my Onc was amazed... I've now had a second IV after 6 weeks and am still pain free. So perhaps they work differently for different people and I am wondering if my liver mets make it more difficult for my body to absorb the tablet form as I have read that this can happen with drugs if the liver is diseased.

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hi Ai and lemongrove, i am geting so mixed up with all this ive rang chemo unit and asked to go back on IV...i came off IV because it was wen i was on chemo and regular hossi appts and i just thought the morning tabs would be easier...them GP offered me monthly tabs i thought great then got told not the right ones ..

Lemongrove
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Re: Bone mets - please join in

My understanding is that Ibandronic acid is Bondronat. Bondronat is the branded name I believe. Have just looked at my Bondronat box, and it say's Bondronat 50mg, and below that it say's ibandronic acid.
Bondronat is also given to women with osteoporosis, but in a much lower dose.
I know some like their bisphosphonates by infusion, but I'm not aware of any advantage, and I hate needles.

Alibabes
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Re: Bone mets - please join in

It belongs to a group called bisphosphonates which strengthen bones hence used for osteoarthritis and bone secondaries. The aim is to prevent fractures due to weakening of the bones.

Ali

Alibabes
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Re: Bone mets - please join in

Hi avril, isn't Bondronat Ibandronic Acid? Just a brand name for it?

Ali

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hi all, went to see my oncol today post rads..says alls well..then asked bout tabs im taking, said GP changed my Bondronat to ibandronic..bondronat have to take hour before drink eat...iban once a month..ibandronic are tabs for..osteoporosis...not bone cancer...oncol wrighting to tell my GP not to give me them again...gona ring chemo unit and ask to go back onto IV...just easier..who can you trust with ur health and well being..

finty
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Oh Sarah, I'm so sorry you're going to have to wait even longer. Will you be able to have a chemo break after the mx?

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Sorry about the changes of plan Sarah, must be very unsettling for you to psych yourself up for one thing and then have a different plan or timescale. Hoping that the new plan will give you the best outcome. Give me a shout if you fancy a coffee some time? xx

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So change of plan. Am about to go on navelbine. Mx scheduled for end of October. Happy days .........

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Re: Bone mets - please join in

Went to see surgeon today and now wating for a date for my mx. This won't get rid of all of the tumour but they want to avoid ulceration and reckon it will benefit me overall. I shall be glad to be rid of it! I am looking at a date of in the next fortnight. Scary but have waited for a long time to get to this stage. It dosent look like the bones have got any worse and no soft tissue involvemnet as far as they could see from my scans so that's good news. Off to foot lady in a bit cos have infectyed toenail, after having an ingrowing one........ouch! Have a facial booked for tomorrow, bliss. I shall probably nod off. Its a treat for myself after having mri, ct scans, 2 onc appts, breast surgeon appt and iv zometa all in last 2 weeks. Phew. Glad that bits over for a while,
x sarah
By the way, thanks for all the good wishes peeps xxx

Esha_Ness
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Re: Bone mets - please join in

Hi all
Yes to tiredness !!!! . I love and benefit from my afternnon naps ...40 winks turns into well beyond that.Decided resting on a settee is better than taking to bed !! Then have the energy for evening and going to bed late.
Esha

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hi Julie, i go on at my dad for not having an alarm incase he falls and now i know why he wont....silly pride..Roxanne is doing ok ta gose to be measured for rads nxt week and starts chemo 14th of sept, im back at oncol dr thursday think its just a check after rads, but she did mention a bone density scan...it feels odd not having been to the hospital for a few weeks lol, im feeling good at monent and even started going to local gym keeps me posotive..

Lemongrove
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Thank you for links. I finished my chemo in July 2010, and all the rads (including Cyberknife), were completed in October 2010, so it seems unlikely that the tiredness is a post treatment issue (although I am taking AI's). The only thing I can think of is anaemia, and actually my GP suggested that I should get a blood test when I went to the surgery a couple of weeks ago, when my hubby was unwell. I didn't follow it up, as I don't feel tired all the time (as I probably would if I was anaemic).
If the tiredness becomes a regular issue I'll get a blood test.

Jo_BCC
Member

Re: Bone mets - please join in

Hi,

Here's the link to the area of the website where side effects of chemotherapy are discussed:

http://www.breastcancercare.org.uk/breast-cancer-breast-health/treatment-side-effects/chemotherapy/s...

Also an area just related to fatigue:

http://www.breastcancercare.org.uk/breast-cancer-breast-health/moving-forward/long-term-side-effects...

Hope this helps. Take care,
Jo, Facilitator

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Yep Nicky - I remember a session on fatigue too at the BCC days I went on in Sheffield - for me there's a general fatigue most of the time but sometimes it just "hits hard" so I'm so weak I have to have a rest as body just feels it can't support itself... so understand what others are talking about... I now try to pre-empt this feeling by having at least an hour's rest every day in the afternoon and have got used to planning my life around this necessity. Today is a quiet day for me as I've had a busy 4 days of family activities and need "time out". Glad to you you are feeling better Lemongrove.
Am glad my pain from the rads on spine (T12) keeps changing - does this sound normal? Pain at tumour site and then after about a week the muscles seized up to protect spine and now 4 weeks on those two types of pain have gone an general nerve acheyness across the whole of my mid-back (off to find heating pad again now...) Have Onc appt next week so can talk it over then but wish I'd had some pre-guidance as all I got was huge tub of aqueous cream and warning about skin sensitivity and I've had none of that! But spine itself feels fine now so am taking that as a big positive.
All of this is below my bra line so I don't think that's an issue for me Lyndyloo but an interesting idea as years ago I found that even a bra with a join in the straps that's at the back of the shoulder set off nerve pain from the pressure of the join in matrial and then I started buying bras with the join/adjustment at the front of the shoulder strap and pain disappeared - have you changed bra design recently?
take care all
Fran
x

nicky08
Community Champion

Re: Bone mets - please join in

Hi Lindyloo
My mets are in my hip and, up to the last time I was scanned a 'hotspot' on my spine - which may have developed I suppose. I'm due to get a scan in September to see if anything has changed as it's been a while since my last scan. Fingers crossed it hasn't!
Hope everyone else is feeling Ok and not getting too exhausted. Until JulieD mentioned the 'fatigue' word in her post I'd forgotten about a secondary BC day I went to in 2009, run by BCC. There was a session on chemo fatigue which is recognised as an after effect of chemo. BCC may even have a leaflet about it if I can remember that far back which may be worth checking.
Nicky xx

Lemongrove
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Re: Bone mets - please join in

Thank you for the replies. Most day's I bob along quite happily, but then every now and then I get this wave of overwhelming exhaustion that wipes me out.
spent the day gardening yesterday, so I'm OK again now - but it's scary when it happens.

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Hi the carelink thing is for anyone that us disabled or as a illness if u google it it comes up on the council website

JulieD
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Re: Bone mets - please join in

Ramsfan, I'm still here! you're right, has been a bit quiter than usual but hope that means folk are on holiday or feeling good and taken a break from thread for a bit.
Avril, that must have been a bit of a shaker, I think Lauras idea might be worth looking into, don't think these alert alarms are only for the elderly but not sure. Being on your own you need peace of mind that you can get help if needed. Glad you didn't hurt yourself too much. How's your daughter getting on?

Happyfeet, how are you? Any further news on treatment? Hope you are feeling a bit less stressed and angry.

Sarah and Val, any news about your ops yet? Fingers crossed for you both.

Lemongrove, sounds like the dreaded fatigue, but if you are woried have a chat with GP and mention it at next onc meeting too.

Mary, hope faslodex went ok, will be in touch soon.

Alex and everyone else hope you're all doing ok.Dawn did you get my PM?

Ramsfan55
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Re: Bone mets - please join in

Hey everyone it's gone a bit quiet on this thread for my liking! Has everyone gone on holiday??

It's really useful having a thread that is dedicated to bone mets and all the things that go with it so please don't stay away too long x

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Hi aww poor u wat a shock I know most of us are not old and I don't wanna say u are but my brother as carelink because of he's illness so he can take the alarm in the shower with him in case he falls sometimes u have to pay some u don't with bone mets it might be worth a thought for peace of mind unless anyone else as any ideas hug laura

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hi all, i fell in shower this morning shook me up was led their thinking if i had realy hurt myself id be in real trouble as i live alone bruised my back quite bad but made me realy think of problems living alone might cause in the future

LYNDYLOO
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Re: Bone mets - please join in

Morning Lemingrove & Nicky

Just reading your comments about being exhausted. What happened to me yesterday was quite scary. I was at lunch with hubby, daughter and grandchildren. I was eating my lunch when all of a sudden I felt sick and very dizzy thought I was going to pass out. Never passed out in my life. Bacically I thought this is it the end. I asked hubby to take me outside for some fresh air. Staff at the restaurant brought me some water after a few minutes I felt better. It has put me off going out now. I am going to make an appointment at doctors tomorrow to get checked out. Does anyone with bone mets in spine have trouble wearing a bra. If I have one on too long my back really aches. Nicky can you refresh my memory where your bones mets are. Hope everyone is doing OK. Be in touch.

nicky08
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Re: Bone mets - please join in

Hi
Lemongrove - yes, I feel bl**dy knackered some days. Most days I'm absolutely fine and don't even remember I've got bone mets - which I know is a good position to be in. Other days I'm shattered. Maybe it's a build up of doing too much and your body telling you to slow down. Don't underestimate what your body has been through and I hope you feel less tired today.
IwillTry.... Hi. I haven't gone back far enough to read all about your wife's current situation but, from my experience, Tamoxifen doesn't always do it's job of keeping BC at bay, it didn't in my case. However there are other hormone therapies, AI's, that work in a completely different way to Tamoxifen and also maybe there are other chemo's that would work? Sorry I can't help.
Good luck to everyone else on here and to Sarah for your op.
Nicky x

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Hey all,

Just thought i would follow up on earlier posts to let you all know the path report so here it is let me know your thoughts as we still don't really understand it all.

Lobular Tumor 4cm IBC, further 5cm pre-cancerous, 7mm clearence, nodes 3/5 & 0/22 (but with 22/22 pre cancerous) grade 2 level 4 with mets to bones, Her neg Hor pos. Took 9 months before they operated.... on tamox, zoladex, ibandronic acid and calcium, looks like rads next. Chemo stopped in Jan as it was having no effect. This all looks kinda not so good......tell me different please 🙂

Lemongrove
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Bit worried today about extreme tiredness. I decided to bath the dog this morning (which I must admit was a bit of a struggle), but for some reason immediately afterwards I felt as though I was going to pass out. I told my husband that I needed to lay on the settee, and before I knew it I was fast asleep.
I suppose my body did take a hammering with all the different treatment I had last year, and my energy levels have never really returned - although I still manage with housework, shopping, gardening etc. It's just a bit scary when I have days of complete exhaustion.
Just wonder if other peeps with secondaries have the odd day of extreme tiredness/exhaustion?

JulieD
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Sarah,
Glad it looks like op is soon. I found PJs best, easier for medics to get to you without losing too much dignity!
I was realy tired the followintg day so only simple dip-in reading, or you could probably do your knitting if you're not hooked up to drips.
Let them see you walking around, try to keep bowels working and you'll be home in no time!!
Good luck, keep us up-to-date xx

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hi Sarah, id find out how long you will be in hospital i was home less than 24 houts after mx and lymph clearance and i live alone, the district nurses came daily to see to me, good luck Avril

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Hi everyone,

Ramsfan, good news about getting clear margins I am glad that you are feeling more optimistic.

Cromercrab, I took PJ's to hospital and I purchased a pair of cheap slippers from primark, which I threw away when I was discharged. Most women go home two or three days after the op. I was kept in for 8 days, in my view this was completely unreasonable. They said it was because I was still draining. It got to the point where I would put on full make up in an attempt to make myself look well enough to go home. I also spent a lot of time in the hospital cafe cos I was so bored. Despite having to stay in so long, I was out driving my car the day after I was discharged. Changing gear was a bit tricky but apart from that in my mind I was perfectly ok to drive.

Try and get tramadol rather than than the liquid stuff that you can self administer through a drip. The liquid stuff makes people scratch.

I always took the pain meds at night even if I was not in pain as they knocked me out and as a result slept really well despite being on a ward.

Take loads of fruit with you and drinks as the meds can bung you up and this can cause delays in being released back home.

Take things to do that are not too taxing, i.e. knitting, computer games etc.

You will need to take any drugs that you are on with you.

I felt a great sense of relief following my mx, I think this was because it was the source of my problems. I hope it all goes well for you.

Alex

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Hi guys. Still not sure ifvlapatanib and capecitabine are working. However I am to see the surgeon next week and it looks like I shall have mx and node clearance quite soon. Hurrah. Can I have some advise as to what I should take into hospital, what night wear should I get etc. Any advice would be veryvwelcome. Also how long is recovery?
X Sarah

Ramsfan55
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Just been to see the surgeon for follow up since my lumpectomy last week. I had the best news possible under the circumstances: She got all the tumour and the margins were clear, biopsied two lymph nodes which were clear. The cancer is still 100% oestrogen +.

Now for radiotherapy and continue with hormone therapy/zometa.

She said I had reasons to be optimistic but I guess I also have to be realistic. Feeling relatively good at the moment though.

I hope this might give others some hope that there can be some good news on this otherwise pretty awful journey!!

She also said the numbness in my feet could well be the after effects of chemo but to monitor it.

Thanks for your support

Suzanne x x

lizcat
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Julie - I have a copy of my last scan report and it says there is a 25% reduction in the spine on my right side because of the mets I had zapped in T9. I'm under 5'3" so not much to lose. Oh that it was from my width......My next bone scan is Sept sometime before I see onc so we'll see what that says.

Liz x

JulieD
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My mets are ribs and spine so maybe I'll shrink more - just wish I could shrink weight wise rather than height!!!
Good luck with the new chemo, hope it does a good job and not too many se's.

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Julie, I think it's probably been caused by spinal mets weakening the vertebrae and causing them to collapse in on each other, but I also had a form of osteporosis for about two years prior to diagnosis so it could be this or a combination of both of these things. I don't know if spinal mets cause this kind of bone loss, perhaps someone else knows the answer to this. I'm starting another course of chemo in September because my spinal mets aren't stable, but it's tablet form this time so I'm hoping the SE aren't as severe.

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I've shrunk too. I used to be 5'3, but am now 5'1 and a half. That half is very important to me! I had spinal cord compression though, which required operating on. The surgeon told me afterwards, that he'd managed to give me an extra centimetre.
To me, size matters...:0)
Isobel

JulieD
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crawfo64, do you know if that is just age shrinking or to do with cancer/treatment? I'm about same height as you're new height, we're not gonna shrink too much are we?!

Hope everything else is ok besides the shrinking.

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Well, I had it confirmed today - I am shrinking. I was 5'5 but now I'm just under 5'4.

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Good luck Fix sending lots of positive thoughts coming from cyber space xxxx

Ramsfan55
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Lots of best wishes for the results to be positive from me too x

JulieD
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Lots of positive vibes winging their way to you for your meeting thisafternoon! xxx