67.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Bernie610
Member

Re: Bone mets - please join in

Hi ladies thank you for all the support and advice. CT scan tomorrow 🙀. Can I just ask if you know if I am ok to have a pedicure that includes a massage to my lower legs? x
Moijan
Member

Re: Bone mets - please join in

Yes Sharon, how is it going? Hopefully you have been doing some lovely things and that is why we havent heard from you? We are all thinking about you and batting your corner.

 

Moijanxx

Moijan
Member

Re: Bone mets - please join in

Hi Bonariensis, sorry to burst your friends bubble...am sure she felt very comforted thinking that, but alcohol is a diuretic! i love alcohol, but....as I keep getting ? Uti's I am avoiding alcohol as it and caffiene irritate the bladder, as well as being diuretics.

 

as for not drinking after 6 pm, that may hold some merit, but on chemo I have to keep my fluids up, so im always drinking water etc, late in the day.

 

oh, and one more tip ladies..look this up if you dont believe me....the brain shrinks, so we need water to ensure it doesnt shrink too much..can feel dizzy etc.  when im bell ringing, I drink extra water to give my chemo brain a chance to function better.

 

spect ive P'd you all off now😦

 

moijanxxx

Carolyn52
Member

Re: Bone mets - please join in

Hiya Sharon
How r u ..we are all thinking of you and hoping you are getting a bit stronger .
I think the nurse told me that they had changed the flu jab ingredients this year ..asked me if I was allergic to eggs???? Which I thought was a strange question but to be honest ..I've had no problems and if anyone is going to get se of anything its usually me !!!
Like the wine idea though ...bonariensis ..anything to stop the three hourly tinkles during the night!!
bonariensis
Member

Re: Bone mets - please join in

Hi all  I was told by a friend who said she had a glass of wine at lunchtime if she'd got meetings all afternoon that  having a glass of wine STOPPED you peeing so much and my experience has been (although it might just be wishful thinking) that this might be true. xx

rosie53
Member

Re: Bone mets - please join in

Evening ladies, I'm also a night time pidller!! And I don't drink after 6 either, it drives me potty! 

 I'm jumping on the flu jab wagon, not with the trots though, I'm starting with ANOTHER cold, I've not been right since I had it done around 5 weeks ago. I've had tons of vitamin C today and have started taking echinacea too. It's my birthday next week and we are off to the Lake District at the weekend, if this cold hasn't gone I'll be sooooo mad! 😡😡😡

Hope your all okay. Sending a shout out to Sharon  (((())))

Hugs Janette xxxx 

Carolyn52
Member

Re: Bone mets - please join in

Good advice Stress head
Hic ..larger glass of red wine tonight then.
Warning :
Any new ladies reading the thread ...please do not take my new health regime seriously ..I'm a complete idiot !!
Xxxx
stresshead
Member

Re: Bone mets - please join in

Carolyn, if not drinking after 6pm doesnt help with the nightime visits you may as well have another glass of wine.....and a bit more chocolate. I love your new healthy regime!! x

Carolyn52
Member

Re: Bone mets - please join in

Oh Stacey .
Poor you ..don't know the medical reason why we need to wee so much in the night.I don't drink anything after 6pm ..yet still have to get out ..sure I have a second secret bladder tucked away to keep me awake !!!
Carolyn xxx
Stacey
Member

Re: Bone mets - please join in

It's BANG BANG in my neighborhood until at least a week after New Year.   Hate it.  Thankfully neither of my two dogs are afraid.  One does not like them but tolerates the noise. The other barks like a madman (maddog?) at every loud bang.  

 

Tired all the time now because the Anastrazole makes me get up at least six or seven times a night to wee.  If I didn't I'd literally wet the bed ... not very nice.  Letrozole did it to me too ... but with the added SE of heart palpitations.  I'll just have to live with it ... but combined with getting up to wee and my dog barking at ever blast I'm not likely to get much sleep until mid January!

Carolyn52
Member

Re: Bone mets - please join in

Only bought Kojak lollipops as I don't like them !! Why so many fireworks though ? The weekend here has been bang bang and my son's poor dog almost jumped out of his fur every time . Hate them ..it's a man thing isn't it ??
julzd
Member

Re: Bone mets - please join in

Hiya my stomach is ok today been eating all the trick or treat sweets the kids better hurry up and get them haha. Hope your hubby is ok Carolyn have a good night tonight no doubt my the dog will be going wild with knocks on the door. Thanks moijan hope your ok love Julie x x x
Carolyn52
Member

Re: Bone mets - please join in

Jultz
Hope your tum is better today ..hubbys is even after sprouts and parsnips with his roast yesterday ..it could well have been the flu jab !!
Well I'm all healthy today with my 2pm choc .had choc raisins so surely they count as at least two of my five a day ??
And my evening pizza is a Hawaiin so the pineapple is another of my five a day.
My glass of red wine ..with grapes ..surely makes up my five today ?? impressed or what with the new healthy me...haha .
Carolyn xxxx
Moijan
Member

Re: Bone mets - please join in

Oh Jultz sorry about the tum. i must admit the flu jab makes me feel ill when ive had it, so I dont tend to bother,

 

scrambled eggs, stewed apple can help with diarhoea.  (I would avoid chocolate)I do hope you feel better soonxx

 

love Moijanxx

julzd
Member

Re: Bone mets - please join in

Hi Carolyn I had my flu jab last week I've had an upset stomach too today has been my best day I've also been loaded with cold I think it was the flu jab but I know there are a few sickness bugs going around x x
Suskak33
Member

Re: Bone mets - please join in

The Bone man is an athopedic surgeon and has full details of my scan - yikes!
racer
Member

Re: Bone mets - please join in

I must admit we bought one tub of sweets and we have eaten them so had to buy more . Fireworks have started in our area. I am hoping to go out with my youngest tomorrow night if I am up to it. It will keep him happy .
Watching GP race and settling to watch Poldark later. My guilty pleasure lol xx

Carolyn52
Member

Re: Bone mets - please join in

Hello racer
Yes I did a bit of online shopping yesterday too ..Xmas is a good distraction from hosp and scans etc.
Well this Halloween lark seems to b going on for days ...got lollipops ready for treat or trickers ..yum hope they don't call and then I can have them myself !! always buy things I don't like though as it would break my heart to part with choc.!!
racer
Member

Re: Bone mets - please join in

Thanks everyone xxxx Hubby is worrying especially if I feel tired . My youngest had us up in the night with a tummy bug so been disinfecting everything . Ordered my Christmas groceries and going to do some Christmas shopping to distract me. Will order
some things online and try not to go into overdrive lol!
Sounds a good idea with the chocolate Swiss roll . I seem to be craving sweet things at mo and stopped slimming world until I know what is happening xxx

Barton
Member

Re: Bone mets - please join in

Carolyn, sorry to read hubby is bad again - he's being put through the mill lately! Hope he is better soon.

 

Hugs. Barton.x

Barton
Member

Re: Bone mets - please join in

Yes, bonariensis, the CT scan appointment arrived in the post yesterday. If it hadn't come I was going to ring my Oncs secretary on Monday. As it happens, I will still ring her to ask for a copy of the report from my last Onc appointment. She is supposed to send me a copy every time, but she usually forgets. It's so annoying as I have to ring each time. The CT scan is for Friday, 11th Nov, so still some time, but it means I will have to wait ages for thevresults again, I expect.

 

Re.the fire - will check out Arty Stuff thread!

 

Hugs. Barton.x

Carolyn52
Member

Re: Bone mets - please join in

Good morning ladies
This day seems endless as sons dog didnt understand the clocks changing so I was up at silly o clock.
Hubby has the trots ..blaming the flu injection and I'm worried about my water bill for the amount of time he has flushed the loo!
In fine but on my 2nd chocolate swiss roll already with the coffee.....oink oink .
Xxx
bonariensis
Member

Re: Bone mets - please join in

Hi Racer Waiting seems to be a big part of all of this whether at the clinic or for results. How can i say try not to worry. All i can say is distract yourself with as many good things as you can and take each day, each hour at a time. B xx

bonariensis
Member

Re: Bone mets - please join in

Barton Have you got a scan appt yet? I wanted to continue the architectural thread but have done so on 'arty stuff'

Moijan
Member

Re: Bone mets - please join in

Hi Racer, you poor thing. I hope everything works out.

 

sounds as if you are very brave too, my word!

 

yes i think honesty with the kids is best, they can cope with it generally.

 

lots of love

 

Moijanxx

racer
Member

Re: Bone mets - please join in

Hi everyone, just to update you I went for bone marrow assessment yesterday. We had to wait a while and I was getting nervous . Had not been told after an hour that they were running an hour and a half on top of that . Just so busy and terrible to see how many unwell people there are at the clinic.
I had both tests and it was a bit uncomfortable when taking samples but said I did well. I was just thinking about the other people waiting and to get it done quickly . One of my tests they could not withdraw any fluid and said should have results in two weeks . Heamotology were concerned about my platelets as they had been 50 and should have been 150 prior to transfusion . Will need a top up with blood . Feeling tired today and a little sore . Just trying to rest. Trying not to worry and taking a day at a time .

Since I was diagnosed in 2010 we have always been straight with our three children who are now 16,13 and 8 . The youngest was very unwelll when he was a baby and we were always advised to be straight but obviously putting it in words that they could understand . It has meant that they are supportive and advised their Schools so they can have support from friends etc . Hope this helps .
Kids want to go and get Halloween costume so hoping I can put my feet up for Strictly later . Have a good weekend everyone xxx

Barton
Member

Re: Bone mets - please join in

We were so lucky to be spared the Cathedral and the close during the war. Not for want of trying, though! We also lost so much the the planners that could have been saved - Bedford Circus was supposed to have been lovely. Apparently it could easily have been saved as it wasn't that badly damaged. City planners have so much to answer for, although Exeter didn't suffer quite so much as Plymouth - so ugly now (in my opinion - hope I don't offend any Plymothians on here!).

 

Hugs to all. Barton.x

 

Ps - sorry to turn this into a news/architectural thread!

bonariensis
Member

Re: Bone mets - please join in

Yes it's sad. The cathedral close is the heart of Exeter, particularly as so much of the old city disappeared in WW2.

Barton
Member

Re: Bone mets - please join in

Yes, Carolyn - so sad about The Royal Clarence! I think they recently did it up, too! The insurance claim is going to be horrendous! The shape of Exeter city centre has now changed forever - even if they rebuild to the same look out front, everyone will know it's fake. Was going up town this morning, but someone told me all the buses are stopping near the parcel office - too long a walk in each direction for me, so have postponed visit. Nothing urgent wanted, luckily.

 

Hugs. Barton.x

Carolyn52
Member

Re: Bone mets - please join in

Hello ladies
Sharon So good to see you posting on the other thread ..poor Moijan is feeling like Billy no mates now with erubicin as both you and Helen have deserted her.
Well I expect you have seen the news ..our lovely royal Clarence hotel has been virtually burnt to the ground ..it's still smoking ...but that's 300 years of history just gone like that and so sad ...and other olde world shops involved as well.
Nothing's guaranteed to be forever.
Love to everyone xxx
Moijan
Member

Re: Bone mets - please join in

Hi Bernie,

 

hope things feel brighter and you have a peaceful werkend.

 

suskak, Natalie has a point..I used to come away from the dr thinking ooh, forgot to ask that! Now i note stuff on the ipad and just hand it over...my writing is very poor!

 

Waffles....am still not that oh fey with the meanings of. The two types of mets, but lovely onc. Said it was good that more were now sclerotic. So I have to trust him on thatxxx

 

fortunately, 

I dont get a lot of bone pain, apart from my ribs, one  apparently has a fracture which might be due to metastases or radiation...anyway they can be painful and catch me out. My knees are both past their sell by date, but thats not new!

 

hugs,

 

Moijanxx

Bernie610
Member

Re: Bone mets - please join in

Thank you everyone x
stresshead
Member

Re: Bone mets - please join in

Bernie, sorry to hear about yor scan results but keeping everything crossed that your clear everywhere else.

cant really add to what the others have said.....we are all here for you. x

Bernie610
Member

Re: Bone mets - please join in

Sorry Suskak auto correct decided you were known as Susan xxx
Bernie610
Member

Re: Bone mets - please join in

Hi Susan, your treatment sounds promising. Do you have a different oncologist for your bone treatment? Re the 'bone man' I like that! x
bonariensis
Member

Re: Bone mets - please join in

Hi Bernie, Sorry that you have to be here but you'll have seen that you are not on your own and that there is a lot to hope for. My children are older but it was still hard telling them, particularly my daughter who suffers with depression from time to time. But she was supportive, did a lot of googling and told me things I ought to know. Around the time of diagnosis there was only so much googling I could cope with at once. We manage to look after each other. I hope you have finished with bad news for the time being. Enjoy tomorrow with your daughter. B xx

rosie53
Member

Re: Bone mets - please join in

Hi Bernie, just a quick one, any questions/worries that come to mind before you see your onc/Macmillan write them down and take them with you. Sometimes your head is spinning with all that's going on and you totally forget to ask things.
Hugs Janette xxx
Waffles
Member

Re: Bone mets - please join in

Hi Moijan,
I'm a bit confused. I saw the registrar this week and I caught a glimpse of a recent x ray report and I saw the word lytic mentioned. So it sounds like my mets are mixed rather than sclerotic only as I thought. Registrar said the sclerotic areas were healing mets but my onc had said they were sclerotic from start. Who knows! I really don't want to read my scan reports myself as it would freak me out too much.
JulieD, very good explanation of different types of bone mets.
Best wishes xxx
Suskak33
Member

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
Moijan
Member

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

Barton
Member

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

Barton
Member

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

rosie53
Member

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 

JulieD
Community Champion

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.

Bernie610
Member

Re: Bone mets - please join in

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
stresshead
Member

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

Carolyn52
Member

Re: Bone mets - please join in

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
Carolyn52
Member

Re: Bone mets - please join in

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
Rose47
Member

Re: Bone mets - please join in

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

Bernie610
Member

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