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Bone mets - please join in

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Re: Bone mets - please join in

Hi Truffle Shuff...

 

So sorry you now have this new worry....fortunately, im able to point you to a newish thread which you may find useful. The thread has quite a bit of helpful info on it now.and others who are in your position or have been..do have a look.

 

 

and lots of hugs for you xxx

 

https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Nearly-4-years-in-and-brain-m...

 

Moijan💖💖💖

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Truffle-Shuff,  Well that result , I'm sure put you in a spin. The liver seems to respond well to treatment for most. I wonder if it is bc of the livers own  healing ability? Do you know what chemo you are going on? Have you had capecitabine? It can pass through the blood/brain barrier. Have you had any appointments with I'm assuming a neurologist/oncologist/radiologist team to discuss your plan. My experience with friends is that they have tried to have each tumor zapped if possible, saving whole brain radiation if absolutely necessary. You need to find and read some positive stories on this! There are woman out there who have done wonderful for years. It's OK to be scared, I know most of us would be a basket case! We are here for you. FF

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hi truffle stuff,

Sorry to hear your latest scan results and understand how frightening it must all be. I  only have bone mets so can't speak from personal expeience but I  have lived with  SBC for more than six years now and I  know women and have quite a few friends who have liver mets and I  also know a few who have brain mets.

 

First the liver mets. The liver is a remarkable organ and is very good at working on greatly reduced capacity,in addition to that treatments can be very sucessful for many years. I  can' give you exact timings etc but I  do know tat some of the liver mets women I  know have been living with it for 6 or 7 years plus and though they may have had to change reatment at some point are still doing well.

 

Brain mets are scary for anyone to think about, because we see the brain as being 'us'. The treatments you get for brain mets vary depending on exactly where they are, how many, how big ....There is surgery, whole brain radiotherapy or targeted radiotherapy (steriotatic/cyberknife). I  have known women who have had these procedures, some of them have had more than one type ie surgery and then later radiotherapy. Most of those I  know who have brain ets have been diagnosed more recently, about 2 years ago. The treatments can make you very fatigued, you might get thinning hair, headaches for a while and sometimes speech and memory suffer for a bit but none of the women I  know has ever said they regretted having treatment and they do seem to improve as time passes and things settle.

 

I  don't know if this has been of any help to you, I  certainly hope I  haven't added to your concerns. What I'm trying to say/demonstrate is that even when we fear the bleakest outcome there are people out there that prove you can be treated and continue to live a relatively normal lfe.

 

I  send love and strength to you - keep in touch xx

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  Hi,  

 

Sorry may be in wrong thread , but I need your wonderful thoughts and experience. I have been treated with Fulvestrant for bone mets for 6 months. scans yesterday show , liver and 3 mets in brain. terrified, will be back on chemo for liver , then if that stabalises will be offered hole brain radiotheraphy, now that scares me , surely that will leave me with lots of problem.

 

 Does nyone have experience of this

 

thank you keep wellxx 

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Hiya sue
All the best for your next round of scans on Monday ..yep what with the nail pins and radio active stuff you will be a force all of your own ..bionic man and superman ..you should be quivering in your boots.
Carolyn xx
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Hiya moijan
Not really a George Clooney fan but he can pour my coffee any day as long as he brings choc as well.
I'm having a bit of a choc health kick ..switched to dark stuff now and with peppermint in middle for my heartburn !! So am trying ..haven't put on any weight in six months since I was last weighed so must be grateful for small mercies !!
You sound chippy this morning so let's think that your chemo is working well.
Carolyn xxx
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Hiya FF
Well your scan results are a bit yes and no but mainly yes as you do manage a good quality of life with ibrance and cope with work at the senior centre so its doing what it says on the tin!!
I'm sure the sunshine on your road trip in April will help ..think we all should be issued with bottled sunshine ...hate the cold weather as it sneaks into the bones and causes so many creaks.
Everyone here in UK seems to have colds ..sniffles and coughs ..it's a health hazard just going out with germs flying !!
Carolyn xxx
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Maldives...can you be a little more specific about 'George'.? iguess Carolyn could tell you, I have been known to make the odd . Risque hint on the forum!

 

 

Carolyn..re chocolate....im convinced there are beneficial substances in choccy, particularly black choccy.....wonder if major consumption levels works against them tho?  But chokky overdose...what a lovely thought!

 

also...'sell by dates'. i dont go much on those eitherxx. Just set up home in the fridge?

 

in a funny mood today after a slightly better sleep. 

 

Moijanxx

 

 

oh and Avrelia...congratsxx

 

 

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Haven't got it yet. I wouldnt bother with coffee if george came with it. Have a fab weekend girls xxxx
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Im sure you will make it to florida just tell them your going xx
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OK, My oncologist and had been in India, and the oncologist I don't like had given me my scan results. He had said stable, some improvement in some areas and a possible growth in one area. My oncologist went to the hospital to go over it. Yes there are improvements and stable  areas. There is one area in the bottom of my left lung that they started watching in Oct. I knew this bc I'm going every 3 months insstead of 6. This area was suspected of being ground glass again. Ground glass is haziness in lung. Also, this time there is a new 1 cm nodule. The radiologist and the oncologist took a closer look at the nodule and said that they aren't convinced it is cancerous bc it's make-up looks different than a cancerous one. They said the haziness could be infection, a reaction to ibrance or cancer. They think it's from infection or ibrance. I do think it's from the cancer but have agreed not to change meds. I had ground glass before in same lung, but top of lung. Ibrance made it disappear. I find it funny that now insurance could be the could cause of this ground glass. Also, I'm very leary of this new nodule. I also find it strange after all this time that ibrance is still shrinking other areas that I have a growth. I feel fine so we are going with that. I wouldn't be surprised that my ibrance journey will  be over soon. Hubby and I are trying to go to Florida for our 35th anniversary. We want to leave April 26th. My appt. is March 30th. I hope I'm able to go. I spent my 30th anniversary in the hospital. I don't want to have my 35th ruined! FF

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Oh Sue that tassimo coffee machine is the one that George Clooney promotes isnt it? Does he come complete with the machine to actually pour it for you as well ... if so I might get one as well !!!

 

My retail therapy was boring stuff really ... but flanelette duvet covers so it will be all cosy and snuggly tonight in our household .. lots of mmms and aaghs when we get in them I hope !!

 

Im also thinking of a new bed ... been looking online but cant decide whether  to go all romantic with a white metal one with hearts and crystals or sensible oak wood .... decisions decisions !!!

 

FF .. hope your visit to oncologist goes ok and things are all good.

 

Happy days

Carolyn xxxx

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Maldives, I haven't heard of a tassimo coffee machine. Will have to goggle it so I can keep educated!

 

Stresshead, I eat a lot of veggies, but do you mean 10 servings! Like a 1/2 cup of each? I don't think I could eat that much! I have been eating a healthy veggie soup for lunch. It has cabbage, carrots, onion,garlic, green beans, zucchini, broccoli, diced tomatoes and broth in it. It counts as 0 points on the Weight Watchers program. Only 50 calories in one cup. I've been eating the soup instead of salad for a few days. I was bored with salad. 

 

Carolyn, I love chocolate too!! I don't buy it bc I don't have any control if it's in the house. Although, I will say there was some here over the holidays and I did very well at saying NO every time it called out my name! I don't want to have to deal with that in a daily basis!! I also don't go down the candy isle. 

 

OK out the door to see oncologist, she is back from India! FF

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Ohh im going to huy myself one of those tassimo coffee machines. My daughter brought one last week and its the best latte ever. The hot chocolates supposed to be good but im not into chocolate.
Who else is splurging out? Xx
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Hello ladies and our new male Chris
Thought I'd just pop in and say hello and hope everyone is tickity boo ...
Sun is shining here but very white and frosty but hey hoo ..soon be spring and summer again.
Did a bit of retail therapy yesterday as we are all slipping with our shopping habits lately ..come on get shopping again and splash the cash ...
Carolyn x
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Hello avrelia
Glad u have finished your treatment and can now look forward to getting your strength back ..it's savage treatment and takes time.
Carolyn xxx
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Hi sweet ladies, hope all of you are fine. Just popped in to say hello before I start work. Me have finished Chemo(for the time being) and now on Tamoxifen. Have never had my period since I started it almost 2 months ago. First scan showed some improvement so I guess that they rely on these little white pills now to make it improve more....

Life is beautiful, meanwhile, when you do not have to go that often to hospital.:) Although to be honest I feel much more tired now than when I was on chemo, perhaps due to the few kilos I put on around Christmas Holidayds.Kisses to all and have a great day.

 

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Hello stress Head
Oops ..your homeopath would probably keel over with a heart attack or something if he had me as a patient !!
I did all the healthy stuff from the Jane plant book at primary stage back in 2004 ..wouldnt even drink tap water etc etc but now im laid back about it all as i have a sell by date now !
But to be honest ..I have 2pm choc but do eat fruit and veggy as well but not the amount your homeopath says ....sounds loads and I would be "purping" all day !!
Carolyn xxx
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In fits Carolyn with the image of you in your crocs on your trike weighed down with chocolate....hilarious. I went to the homeopath yesterday and we got onto diet...should be eating fruit by the bucketful and 10 veg a day as well as supplemets...no mention of chocolate thogh i'm sure wholenut must count. Has anyone ever proved that chocoalte is bad for your immune system??? seriously though, if you mean it, go ahead and get one. Ive even thought of an electric bike but if the trikes are that much god knows what an electric one would be!!! think i'll have a freddo bar while i think about it!!! x

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It all started well today but then I realised my stash of twirls was a five pack and not a four pack so I'm as high as a kite on chocolate.
Promise ..no more mischief from me today .ha ha.
Carolyn 🍫🍫
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Oh good grief! Now what have I started? Nooooooooo!!! Although the cheese scone is agreeable!

 

Hugs. Barton.x

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Hiya Barton
If I hire a bike ..then you should as well ..then after we have had our cheese scone and coffee we can go for a cycle ride !! Ha ha .
Standard outfit will be lots of Lycra, crocs and a baseball hat !!!! Think the little men in white coats would be called !!
Carolyn xxxxx
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Hello Carolyn, if you are seriously thinking cycling might help you, but don't want the expense of buying something in case you can't do it,  why don't you hire something from the place down near the Quay (Saddles & Paddles?) for an hour? Or am I just being gullible again? Are you having me on? If not, good for you! You're a braver man than I am, Gunga Din!

 

Hugs. Barton.x

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And your little dog Toto too!! Carolyn years ago our neighbor got a DUI and drivers license is taken for a year. Her husband was so pi$$ed off he would not drive her anywhere or take over her chores like grocery shopping. She bought one if those bicycles with a motor. She rode it with her basket to the grocery store. They had a mailbox at the post office  instead of home delivery. She would ride it there too. Well, one day I saw her and she was hunched over and pedaling (not using motor) hair flying, she looked like the witch from Wizard of Oz. A couple days later my other neighbor called me and told me she saw her and h w she looked like that witch. We were giggling over it for days bc w e both thought the same thing. My husband told us we were both mean. He said at least she is trying to handle her mistake. Well, the next day he came in the house laughing with tears. He said he just saw the neighbor and coukdn't help himself, that we were right she looked like the witch!!!

 

My daughter says it's sacrilegious to drive past Dairy Queen (soft ice cream) without stopping!!

 

Croc haters. Crocs are wonderful on your feet, if you have sore feet from capecitabine!

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Lol you and your chocolate.i dont really like chocolate but im eating bags of mint creams or sour jelly sweets. I feast at night on them. Can only buy thwm at hospital so i clear thier shelfs out. Lol xxxx
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Sue ...Just looking at them on e bay ..quite pricey at £350 if I'm not going to be serious at using it!! But u do get a little shopping basket with it so i could fill it up with chocolate when I went shopping and a little bell too !!
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Go for it carolyn. Ive just started walking and its made a difference to me so it cant hurt. Some people do yoga. Got such a funny vision of you on the bike wearing your crocs. Lol. Xx
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Hello.
Has anyone here with hip, pelvis and femur bone Mets been told whether they can cycle ?...now don't laugh but someone went past my house riding a trendy three wheeled one and I thought might be a good little exercise plan for me.
Hubby says I will look like a telly tubby or someone from noddy and he will disown me but I'm thinking healthy living ...especially with crocs on as well !!!
Ha ha xxx
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Lol sorry girls. You croc wearers are so funny. My friend loves hers. She sends me photos when shes out shopping to wind me up. I just dont like them but i realise im a minority lol. Xxx
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Well done Bon ( sorry about the name but when I type in the full name ..predictive spelling does all kind of adjustment to your name !!)
Hip hooray for keeping the " crocs" club alive and kicking ..keep wearing them with pride .
Well it's dull and cold here but lucky no ice or frost so will venture out later ..oh dear will have to pass McDonalds ..it would be rude not to stop and get a little treat !!!!
Happy days everyone 👠👠
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Hi Sue...yes, apparently this can happen, according to this previous thread, I'll bump the thread up for you as there was some discussion around precisely the symptoms you are describing might find it useful xx

 

Moijan💚💚💚

 


https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/zometa-reactions/m-p/302346/hi...

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I love my crocs; I wear them all day. Each to his own i suppose B xx

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I think we should have a burn the crocs party. I hate the things lol .my friend from scotland sends me croc pictures to wind me up. Why would anyone want to plod around in holey half wellies. Burn the crocks moijan and carolyn. You can keep the chockies .lol xx
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Has anyone neen taken off the infusion zometa due to calcium problems. My last infusion was 20 dec. It always gives me flu like symptoms which usually puts me off my feet for a few days but tjis one knocked me out im due again this week but have been put on hold as ive been so unwell with fatigue, headaches and a numb bottom jaw and teeth. Ive been booked in to see the max fax specialist and a head mri so i will know in a couple of weeks whats going on. I just wondered if anyone has had or heard of this??? Its very painful around the rest of my mouth and im really worried. Cant sleep at night which is unusual for me. Sue xxx
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Hi lovely Carolyn,

 

sorry about that...im onto those little chocs in a see thru box, wrapped in gold paper now.....they were all in my stocking...

 

caffiene in tea, coffee, chokky, anything...apparently can irtitate the bladder...im only aware of it becouse of my  habit of collecting urine infections! This chemo is making me more prone...when n cape it was cellulitis and a dvt, now its wee infections!

 

its a hard life isnt it?  Oh, and apparently fizzy and decaf drinks all do the same, but if you arent collecting wee infections...prob you wont find it a problem!

 

moijan😖💚💚💚

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Hi Ladies
Thanks for the great welcome..I am quite overwhelmed by your attention!
It is so comforting to talk to people in the same predicament. I feel much better already and have relayed your kind words to my wife. I suspect she is bemused about me chatting to ladies online!! She is very stoic about her condition and if asked about it she says her main concern is the pain in her legs and lower back caused by sciatica. She wishes she could walk better without pain.
I think I'm more worried about her cancer than she is! Recent good news is that her very swollen feet have gone back down to their normal size.
Anyway "it's good to talk" as someone once said and a worry shared is a worry halved.
Thanks again everyone, I'm just off to get me some Crocs!
X
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Hahaha yes now I also know why I'm always on the loo!.....don't care i ain't giving up chocolate! 😤😤
Hugs J xxx
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Moijan
Why have u started talking chocolate ..I was secretly having a choc free day and now it's your fault have found a four pack of twirls I was keeping as a secret stash and of course I will only eat one ...pigs will fly .
But seriously ...I didn't know that caffeine in chocolate could affect the bladder ......no wonder I'm in and out the loo all night even if I don't drink anything in the evening !!
Carolyn xxx
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Hi Carolyn, what makes you think I was referring obliquely to you , haha.

 

now, its official...Carolyn always carefully reads up on posts before inputtingxx

 

actually I love kitkats, but was telling Barton that I cant have too much chokky as caffiene irritates my bladder!

 

so im stuck with a bounty or. Turkish delight, but we whouldnt be feeiding our bc with sugar, should we??

 

in the chemo suite there are always little bowls of sweeties....and I sometimes succumb, but usually I manage to avoid them. I also get a free sandwich there now and tea and biscuits...feel so well. cossetted, comfy lie back chairs,  could be a spa cafe, if it wasnt for the plug ins?

 

xx

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Hello FF
Well bet you have been up to some shenanigans with hubby away ..u naughty girl!!!
I'm going to loose my street cred here now but confess to owing lime green and blue crocs many years ago ...and then I got the flip flop ones in .......tango orange !! But I have never owned anything so comfy since.

I hope u get your ibrance soon as it does what it says on the tin for you and if it works then it's worth fighting tooth and nail for.
Well you had better get your pinny on ( apron) and a full welcome meal ready for hubby and show him you are a stepford wife in his absence!! Ha ha .
Hugs xxxx
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Hi Gang! Welcome Chris! Chris some doctors try to make an educated guess on time others will not commit themselves to a guess. Mine told me it's not an immediate death sentence but he thought I had two years. It's 11 years now!

 

Carolyn my bones crack and creak worse than my peeps at the senior center where I work. I wish you could see them exercise! I could never keep up! I walk slower than most of them. Btw Friday was a great day at work. It was PJ day. I wore my PJ's with a cardigan sweater for a robe and comfy slippers. Hubby went away for the  weekend so I came home and stayed in them. I had a pair of fuchsia Mary Jane crocs. Seriously, they were so light and comfy! I wasn't allowed to wear sandals when I drove school bus. My feet needed to breathe. I would where them to the creek with my dog too. Could walk in and out of the water. My feet swell in the summer and they worked well with that too. They make flip flop types too. I was thinking of trying a pair. 

 

Waiting to hear from Pfizer for delivery of my ibrance. I was supposed to start my next cycle tomorrow. I have 3 extra pills, I could start with them if Pfizer can guarantee shipment by Thursday. 

 

Hubby won't be home from his weekend excursion til later today, so I'm off to see what trouble I can get into. FF

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Hiya ( can't say ladies anymore )as we now have chris join us and very welcone too.
Firstly moijan ...gone off kitkats now ..it's more likely to be a Terrys choc orange but I've eaten my body weight of those so will move on to something else!!
I sooo miss strictly on Saturday night tv ..its real rubbish tv now and the only night I get the remotes to myself too !!
Hiya Bon. ..you say that 70 is the new 50 ...well in my world ..64 is the new 84 !! Phew my bones creak and ache in the cold weather and I've just had bone juice this week . Hope u are feeling better after your fall ..sometimes it takes a few days for the damage to appear ...I can trip over a feather .
So sorry Jeanette you arnt joining the croc club ..can we tempt you with a pretty white pair maybe ?? ha ha ...
Well that's about it ..do nice that this thread is a bit busier again.
Xxxx
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Hallo Chris

I'm 70 too. They say 70 is the new 50 but i struggle to believe that now. I am on exemestane and denosumab and stable so far. My onc told me that the exemestane would only work for about 18 months but having read here that doctors' predictions are notoriously unreliable I remain optimistic till told otherwise. When it does stop working I have not decided what i shall do. Your wife is so fortunate to have such good support from you. B xx

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Hi Chris, welcome to the forum, sorry you have had to join us  (on behalf of your wife) we are a friendly bunch and are always on hand to offer help /advice and support......oh and we are a bit of a crazy crowd from time to time, especially the lovely Carolyn (I know you won't mind me saying that Carolyn ) 😁

I am the same treatment plan as your wife, and also be treated at The Christie hospital, different oncologist though as mine is female, she also doesn't say much, I think as long as we are stable they are quite happy with that. I asked her once about "healing mets" and "NED" (no evidence of disease) she said they don't like to use those terms at the Christie and are happy with stable results. 

 

Morning Carolyn, no I have to hold my hand up and say I've never had a pair of crocs! I'm still rebelling and wearing heels, only at the weekend though  (not really high ones ) 

Well a wet and miserable day here in Manchester today so lazy day eating chocolate and watching the TV for me! 

Hugs J xxxx

 

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Hi Chris,

 

Welcome, and love and best wishes to your wife. Its always a shock to get a bc diagnosis isnt it?

and its so scary...especially if a doctor makes a similar prediction to the one you were given.

 

when I was initially diagnosed in 2001 with a large tumour in my breast and 12/13 lymph

nodes...some of which had leaked into the armpit tissue...I was told it would

likely 'be back within two years' 

 

well, it did come back - about three years ago!  Like many other ladies, I have bone mets,

also liver mets and currently these are well under control.

 

Most of us have ups and downs, either in our cancer spread or emotionally or both....

But this forum is a lovely welcoming place where we all share support,

so that really helps xx

 

Doctors have to tell it like it is...but sometimes I wish they wouldnt make

' survival predictions', because actually no one knows! And of course

if a 'Doctor' makes a prediction it sounds like gospel and we often believe it.

 

Like  many others, I am on chemotherapy and am so blessed that it has shamed the

cancer into a corner and I'm leading a fairly normal life around the hospital visits xx

 

Please come back and join in, let us know how things go, we are all here

for each other X

 

Hugs,

 

Moijan 💚💚💚

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Hi Julie D,

 

thank you...im fine xx

 

how are you? I had felt the forum itself was a bit quiet....but assumed the ladies were hibernating in the cold weather, maybe with a blanket and a hot toddy. Xxx ( or some may take a pile of kitkats with them!)

Moijanxx

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Hiya Chris
So glad your wife is stable and coping well ..everyone is unique with progression of bone Mets and so it's like asking " how long is a piece of string" .
I take a day at a time ..try to do something everyday as a focus away from it all.
You sound very caring and "brave"to post here on your wife's behalf and hopefully you will enjoy many years to come together.
Carolyn xxx
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Hi Chris,

 

I;m glad your wife is doing well on treatment and hope this continues for a long while. I  have had bone mets since 2010 and am on very similar treatment to your wife (i have Zomeata rather than Denosumab but Denosumab is the newer more up to date treatment) so yes, these treatments can work well for us. x

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Hi Carolyn and JulieD thanks for the welcome.
We were surprised but secretly glad that we were not put on chemo or radiotherapy two years ago. Almost wondered if it was because of my wife being 70. Anyway I think she would have declined as she is also being treated for depression and wouldn't cope.
She had surgery and Christies put her on Letrazole and Denosumab.
The bone lesions are stable so far so we count our blessings!
Whilst our onc is very nice he says very little to us on our three monthly visits. I suppose there's nothing to say as there seems to be no deteriation.
We were told originally that she would have about three years so it's nice to hear of people living much longer with similar treatment.
Thanks again for your great forum.
Chris.
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Apparently I was confused Carolyn! Brain is useless some days!