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Bone mets - please join in

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Re: Bone mets - please join in

Hi Bernie,

I am new to all this too having been diagnosed with mets in liver, bones and lungs. 9 weeks on my lungs are clear so my treatment is working . I am
Seeing the bone man next week to get some more details because when I was first diagnosed I didn't ask any difficult questions.

Good luck with your treatment
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Re: Bone mets - please join in

Yes Bernie and Jule, my onc said they were initially lytic but now sclerotic. He says sclerotic better as bones stronger.l an apparent improvement whilst on zo eta!

 

i promised Waffles. Id ask.. And the onc went off to look at my last ct. which apparently showed the change.

he initially was thrown at my question, but i told him we were all ganging up on the oncs and wanted to know. He was fine about it...I like my onc very much.

 

well done Waffles!

 

Bernie, im not a mum, but I do know from others that children hate having info kept from them, so maybe we worry too much about protecting them? Recently the converse happened, a friends daughter didnt tell him she was expecting her second child, when he was dying....she now regrets he didnt know he was going to be a grabddad again...maybe tne communication between parent and child has value xx

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Re: Bone mets - please join in

Bernie, just adding my welcome to everyone elses. Sorry you have had to join us, but you seem to have found the right thread! Everyone here is very welcoming, and you can come here to rant at any time, and someone will be along shortly with tea and bisciuts (virtual, I'm afraid), and plenty of sympathy and good advice. There are many very wise and knowledgeable ladies here.

 

Good luck, and best wishes.

 

Hugs. Barton.x

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Re: Bone mets - please join in

Hello Janette. Re the flavoured drink before a CT scan - I have only had this once, just before my first CT scan, I think. All other times I just get the IV iodine (the one that makes everything feel abnormally warm as it goes in and makes you wonder if you have wet yourself!). There was once when I didn't have the IV iodine, and that was because I had high levels of something in my blood (bilirubin? Createnine?). They just did the scan without any contrast then. I have to say, I really didn't enjoy the drink, so not sad I haven't had it any more..

 

Hugs. Barton.x

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Re: Bone mets - please join in

Hi Bernie, welcome to the forum, sorry you have had to join us but we are a friendly bunch and are always on hand to help / advice. 

My most effected area is also my hip, I have mets in hips and ribs also. I was on tamoxifen initially after dx in 2014 but was switched to letrozole Oct last year, I have responded really well on this and lead a relatively "normal" life. We all understand the need to protect our sons/daughters from the worry of this disease but once you tell them it's surprising how understanding and strong they are about it, just tell her in your own time when you feel ready. 

Thanks for the info on different types of mets, I've wrote them down for my Q & A next week when I see her for my CT results......I always go armed with questions for her! 

Stresshead, I also have the canular injection for contrast as well as the drink......my organs must be glowing in that CT!!!!

Hugs Janette xxxx 

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Re: Bone mets - please join in

Hi Bernie,

Sorry you are having to join us but welcome. I  hope you hear from your BCN  early thisafternoon, the waiting is horrid isn't it. I would imagine that they will change your hormonal (Tamoxifen) to a different one maybe Letrozole, depending on if you are post menopausal. I hope you have  lovely time with your daughter for her birthday and am sure you'll manage your brave smiley face. I  think you are right to wait till she is home and you have more information and have had time to get a bit more used to the idea. You will be better placed to talk about it then - good luck!

 

Maria Louise, try not to worry too much, Oncs know that treatments sometimes take a while to kick in and they look at blood results, how you are feeling etc in addition to scans, I  think it unnlikely they would change your treatment after the first scan. Hope the liver is just a random pain. Keep us up to date won't you.

 

Carolyne. once I'd been stable for a bit my Onc started to see me and scan me less frequently, so you could see it as a good sign. I'm every six months. My Onc has suggested I  go to yearly! I didn't like the idea so at the moment am staying six monthly.

 

Re the different types of bone mets, I  think lytic is where the cancer leads to a breakdown of bone without new bone being made so a kind of lacy/hole effect whic weakens the bone.Sclerotic is new bone being made without the breakdown of old bone first, which makes the bones become abnormally hard but weak. After radiotherapy and other treatments lytic bones can look more sclerotic as the healing/building process has made more bone calcifaction form. Simplictically that's how I  understand it but others may have a better answer.

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Just had the dreaded phone call. So here goes. It's confirmed in lower spine and right hip. Going to get bloods done today then they can arrange an upper CT scan as soon as possible. If it is not anywhere else will px new oral meds and monthly injections. She said research evidences this is a really good treatment. Hasn't discussed plan If CT scan shows it is in any organs xx
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Re: Bone mets - please join in

Hello to Bernie and Maria Louise...sorry you have had to join us but you are very welcome. Bernie, i know what you mean about teling your daughter. I think for all of us that is the worst agony. I have always had a policy that i never lie to my daughter and if she asks something she is always told the truth (although i do try be be lighthearted about it all). It will be a great strain on you not to tell her for a while but you will manage it. I didnt tell my daughter that i had had a scan this time round so she wasnt aware i had a results appointment. When i told her she said 'why didnt you tell me you were having your scan'? i think sometimes we try to protect them so much we dont actually reaslise how strong they are.

Re: type of bone mets...i have checked back on my letters and 'sclerotic' is mentioned so i assume thats what i've got??

Also very interested to hear about the aniseedy drink instead of iv contrast...or have i got that wrong?

If there is an alternative to having to have a cannula i'm all for it.

I know when i first had scans i had to drink water with iodine in it but now its just plain water. seems they discovered it was making no difference??

Love to all. xx

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Hello ladies
When I went for my bone juice last week I queried why I was not seeing oncologist until end of Jan which will be five months since the last one. I was told no clinic necessary as doing ok ..at first I thought great but now I'm thinking staff shortage ? Does anyone else go that long between appointments ? I can ring in at any time if I have problems .
Carolyn xxxxx
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Jeanette
Waffles started a new thread about this bone Mets etc ..I must confess I was gobsmacked as hadent read anything on here before about different types of disease and it is quite interesting .
We have been quite educational here for a change this week ...you with two sorts of contrasts with ct scan as well...Makes a change from all our usual topics !!
I'm into custard cream biscuits and earl grey tea at the moment ..don't know how that's happened ..can't b pregnant ..so must be a side effect of leyrozole !! Ha ha .
Carolyn xxxc
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Hi Julie, Thank you for your response,  my worry is that when I have my first scan since starting Zometa/Tamoxifen it won't have had enough time to kick and start working properly and that they may decide to change treatment straight away.  The pain in liver area is more of an ache really so fingers crossed xx

 

Carolyn - Thank you for being there whilst you can't always answer the questions a quick response for you is always good, its shows that someone is always there and cares 🙂

 

Janette - Thank you for your reply ie, Tattoo, I have in mind a small one that i would like doing and I wasn't sure how to go about it but it seems like it should be ok to go ahead. 

 

Hope everyone else is ok this morning, it feels very crisp here today, a hot chocolate day :). xx

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Re: Bone mets - please join in

Hello, thank you for all your kind comments. It is the MDT this morning so I am waiting for a call this afternoon from BCN to confirm everything and CT scan appointments etc. BCN has spoken about the monthly injections to strengthen bone and kill off the cancer cells and replacing my Tamoxifen with something else but no idea which drugs they are prescribing yet. I have had really bad lower back pain but apparently they can't see anything in my spine. The worse area they can see is my hip and few other spots. My leg has given way couple of times so all very freighting but you are all giving me some hope. It is my daughters birthday on Saturday, she is away at university so I will be traveling to spend the day with her. I just hope I can hide from her how I am feeling, but I am sure I will do. She is coming home for a reading week in November so I should have more information then and be able to pluck up the courage to tell her xx
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Re: Bone mets - please join in

Hi ladies, now lytic/sclerotic mets are new to me, can someone explain what this means????
Hugs Janette xxx
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Re: Bone mets - please join in

Hello Bernie

Sorry you have had to join us but welcome. This is the best thread to be on as it is the most active. Everyone will be along to give you support. We all mainly take Denosumab with calcium tablets along with treatment for the tumours. I have had bone mets in many places and manage them quite well I am nearly 4 years now with treatment. There lots of ladies who have lived a long time with bone mets one 20+ years My phylosophy is I am living with Cancer not dying from it.

 

All the best love and (((hugs)))  xxx 

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Re: Bone mets - please join in

Hi Bernie, I'm so sorry you are back here under these circumstances but there are so many lovely ladies here with bone mets who can advise , help and support you and as you will find many are years down the line from secondary diagnosis, the thought of dropping this on our children is just heartbreaking , it was the worst thing for me but they do you proud and cope with it, sending you lots of love Xx Jo 

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Welcome Bernie! Great place to receive support and rant if you need. We share good and bad news. I'm sure you will receive many welcomes. FF

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Re: Bone mets - please join in

ello, I have just been diagnosed with bone mets following my primary BC diagnosis in March 2015. I am waiting for more scans to see if it is elsewhere too. Can't believe that I am on that rollercoaster of the unknown again and feel very angry right now. My heartbreaks at the thought of having to tell my teenage daughter. Reading your positive posts is helping me feel more hopeful though x
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Haha Janette there's all us thinking you were getting special treatment with a special flavour drink and all along you were getting a double dose I saw someone drinking something but he said he was allergic to the iv maybe they think you enjoy the taste 😲 only joking u would just check maybe it's something they just do at that hospital julie ❤❤
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Re: Bone mets - please join in

Never had that Nicky,

i have it i/v but have to drink 2 litres of water first...or is that the bone scan?

 

also, ladies, I DID ask the onc what type of bone mets ive got? I know theres another thread on this, but any way he said that initially, i had mainly lytic but now they have become maily sclerotic, so thats better for me!

 

Moijanx

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Re: Bone mets - please join in

Hi Marirose, no its an aniseedy flavoured clear drink, I've been having it since I started having my CT scans over 2 yrs ago??? Very odd, please someone jump on board and tell me you have the same!!!😮😮

Janette xxxx 

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Re: Bone mets - please join in

Janette

Is the drink milky white I used to have one before the scan and then the contrast injection in the scan. But they stopped doing it they said it was unnecessary and they stopped doing it at both the hospitals I had the scan including a mobile one that helps out at my hospital. But if it was Christies I would certainly trust them.

You got us all confused or maybe they have alot left over and want to use it up lol 

 

Carolyn enjoy your car maybe you will give driving it a go you never know you may find it easy. Then have car will travel but then if you live so near good shops you don't need the car only to carry home the goods.

 

Love and (((hugs))) to all  xxx

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No Jeanette ..just the cannula and I have to drink a pint of water an hour before.
You must b getting sonething special as Well as a scan !!
Carolyn xxx
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Hhmm now I'm also confused 😞iv always had to drink the iodine drink slowly over an hour before my scan then I have the canular injection done, doesn't everybody have this???? 

Janette xxxx 

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Carolyn. I'm impressed. flabergasted even. It's what comes of living near all those car dealerships. Hope it lives up to your expectations and is comfortable to sit in. They rarely talk about anything like that in car reviews.

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Re: Bone mets - please join in

Jeanette
Now I'm confused ..you have the cannula for contrast and a drink ? So the drink thingy must be for a more detailed look at maybe the liver or stomach ????
We have lots of ladies waiting for scan results so lets hope things are tickity boo for them even without drinks !! Bet it was a sneaky red wine u were drinking really !!!
Carolyn xx
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Hi ladies. 

Moijan, Carolyn, think I misled you, I also have to have the canular injection for the contrast......hey I don't get away with it that easily!!!!

Maria Louise, regarding my tattoo no I didn't do anything to prepare or check with my onc first, oops maybe I should have, never even gave that a thought! 

Hugs Janette xxxx 

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Re: Bone mets - please join in

Maria Louise,

 

The Zometa should start to work straight away but you may not see much evidence of this till first or second scan after it's started. Pain can be a sign of healing Smiley Very Happy

 

The Tamoxifen should kick in in about 4 to 6 weeks. I'm on a similar regime to you but am on Letrozole rather than Tamoxifen (I had Tamoxfan for primary) and so far the treatment has kept me stable for six years Cat Very Happy

 

Hope this has helped and you feel a little happier. xx

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Hello Maria
Laughing to myself as I can't answer any of your questions but thought I would just say hello and hope u will post more often as we like to hear from everyone !
I'm on letrozole which is a hormonal like tamox and was told it takes six weeks to kick in.
I hope u get some replies from other more knowledgeable ladies .
In the meantime enjoy some sunshine today.'
Carolyn xxxx
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Re: Bone mets - please join in

Morning Ladies,

 

As always I have a question for you.  I do keep up to date with you all, chocolate eating, car buying, scans and treatments(not listed in order of importance) !!. 

 

1. I am now on my 2nd month of Tamoxifen and Zometa and I wondered how long they take to start working      (if at all but I must look on the positive side). 

 

2.Natalie, you had a lovely tattoo done recently and I wondered if you had to take any precautions to be able to have this done due to our treatments ?.

 

3. Can pain be a good sign ?  I have a little discomfort now and again, liver/rib side ( I have liver met and a met in hip although no pain from this one since chemo).

 

Many thanks as always,  Maria xx

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The side effects of our treatments do.include shopping impulse and eating choc and McDonalds so we are only doing all this because we can't help ourselves !! Ha ha.
Talking of McDonalds ..I always have a happy meal ..you get a little troll to put on a pencil and a activity book free at the moment. Whoop whoop ..what fun !!!
Hope you all coping today ..have another coffee and custard cream biscuit !!
Carolyn xxx
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Carolyn that beats my random summer house that never gets used lol. Janette I'm going to ask about that cause they always have a nightmare with the veins bet ours wouldn't have a flavour though haha. Xx
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Sorry not good at technical things . Thanks Ladies I appreciate your comments. On the positive side I have had lots of my youngest son's Mums offering to help with him .?So this time I will accept their help as it takes some pressure off. Mind you he has invited about five Eight year olds to go trick or treating ! Hugs to everyone who is struggling at mo xxxx

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Thanks for the reply . Oncologist had said just to start with one dose of Chemo as he does not want to destroy bone marrow. However I got home and read the form and it said weekly Vincristine. So have more questions with Onc ..think I will write them down as forgetful. Just a bit of a shock and hubby keeps on at me to eat as not really got any appetite . Think treatment plan will depend on bone marrow assessment on Friday . We are in Scotland for a couple of days but I feel worn out . At least we can park up and watch the kids play on the beach . I willl keep updated this time xxx

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Hahaha Moijan, I didn't use to get flavoured contrast when I had my scans at my local hospital it's only since I asked to start having them at Christies that's what they do there!.....fantastic hospital!
Carolyn OMG that's what I call shopping 😀😀good for you!
Hugs Janette xxx
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I'm lucky that I live nearby to shops etc and so driving isn't a big issue really and hubby prefers to do it anyway .
I might try again to do a small trip but my hip isn't that strong .
Can't believe just stopped and bought a car ..just like that !!
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Carolyn, I love to drive and used to love stick! I still like stick but sometimes when I was driving it my leg woukd get a cramp holding the clutch in. I am like you in the fact that I don't care what the car is as long as it goes!!

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Hiya Barton.
No its not an automatic ..it was £3000 extra but this one is higher and I must try but I'm not fussed about driving ...been driving for over 40 years and fed up really with the idiots on the roads these days . It's got four doors though ..hated two as always leaning over back seats etc .
Not a car person ..as long as it takes me to McDonalds and pound shop ..I will b happy !!
Xxx
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Sharon, sorry to hear of your troubles - I do hope you feel better soon. Hope hubby is taking good care of you.

 

Hugs. Barton.x

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Oh wow, Carolyn - that's what I call shopping!!! I hope its an automatic, then perhaps you can get some of your confidence and independence back. Although I know hubby is very good at driving you places but if he is poorly again like the other day (hope he is better now!), you could at least get out if you needed to.

 

Hugs. Barton.x

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Just thinking why I have to have iv and once again damage my previous veins. Jeanette u get special treatment !!!
Did some retail therapy today to cheer myself up ...passing Suzuki garage and saw special offer so bought a new car !! collecting it Thursday once we valet our old one. Talk about erratic decision ...
Carolyn xxx
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Hi Natalie...how come 'you' get to drink lovely aniseed and blackberry contrast and mugsy here has to have contrast i/v!! Not fair!.

 

good luck for your results tho

 

xx Moijan

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Hi all, just sat here drinking the lovely aniseed contrast ready for my CT oohh I've got a lovely dash of blackcurrant in it....oh the life!
Hope everyone is okay.
Hugs Janette xxx
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Jultz
Just think positive ..the h and p regime you are on is a very good one with good results.
I've also had my flu jab so hopefully no more sniffles !!
Not health but family problem but it will be sorted soon.
Carolyn xxx
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Thanks ladies I'm feeling a bit better it's the scan next week I think I'm stressing it's the first one without the chemo so my mind is running wild plus I had flu jab last week and I'm absolutely loaded dunno if it's that or if I'm just run down I'm sorry for moaning there's people with more important things going on. Sharon hope your feeling a bit better today ❤❤❤❤Carolyn hope you're sorted with whatever you had going on yesterday love Julie x x x
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Thinking of you, Sharon and sending (((((((hugs))))) to you and your lovely hubby, so glad he is caring for you. Hope you feel a bit better very soon xxoxx

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Sharon
So good to hear from you and hopefully with a nice flat tum again you will start to feel a bit more comfy .
A chemo break will do you good and hopefully give your body a rest from toxic stuff!
Lucky you have a good family to support you.
Carolyn xxx
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Dear Sharon

I am so sorry to hear you are going through it maybe your rest from chemo may help you. Thankfully you have a lovely husband to help you out I am fortunate to have mine to help.

 

Sending you (((((((((((((hugs))))))))))))))) and love  xxx

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.Sharon...So nice to hear from you! 

 

Sorry youve been having such a cr**p time!

 

not surprising youve gone off eating, your system must be very tired!

 

maybe concentrate on milk drinks with ice cream added or lots of tiny snacks that you love, till your appetite comes back. Cancer Research had a whole page on this topic, so it must be a common thingy.!

 

just copied a little bit of it belowxxx

Do keep in touch when you feel up to it.

 

Love ,

Moijanxx

 

Make a smoothie by blending fresh apple, strawberries, banana or other soft fruit with fortified milk, fruit juice or yoghurt in a liquidiser or blender. Supermarkets sell mixed fruit and frozen smoothie mixes which work well if you are making your own.

To make a nutritious milkshake, mix fortified milk with either puréed fruit or a fruit yoghurt and top with a scoop of ice cream for extra energy.

Make a chocolate and banana milkshake with chocolate flavour milk and whizz in a blender with a banana. This is delicious and nutritious and easy to eat if you can't face a meal.

 

Some of the ready made drinks  below.
Ensure Plus
Fresubin Energy
Fortisip
Resource shake
Ensure Plus Yoghurt Style
Fortifresh Yoghurt Style
Clinutren

 

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Re: Bone mets - please join in

Morning ladies.
Jultz, hope your feeling better now you've let some steam off, sometimes we need to release that button, and where better to do it than here, because we allllll totally understand!
Sharon, really sorry to hear your still having such a rubbish time, we're all here thinking about you, sending you a huge cyber hug ((((())))
Hugs Janette xxxxx
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Sharon, hope things become easier for you and you feel a bit better. Thinking about you. Gentle hugs B xxx