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Bone mets - please join in

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Re: Bone mets - please join in

 
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Must try First Defence. Am in the middle of one of St********m Primary School's finest. Thought at first it was an allergic reaction to cleaning my daughter's house. Hugs to all B xx

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Hi Moijan

Thanks, and luckily chin is very much up! Well, that's until I get the second dose and side effects might be worse. However I'm sure when I have got into the new routine there should be a possibility of meeting up somewhere close enough to us both to swap stories! With Easter in the middle of my first cycle my dates have been thrown completely out and I may be moving to a different treatment day anyway as our chemo ward gets very busy on a Friday when I always have gone.

Take care and thanks for the tip about First Defence - have you got shares in the company? Ha ha.

Nicky x

ps Hi to all other mets ladies, hope you have all been able to enjoy the brief spell of good weather, how nice to see the sun shine for a change 🌞

 

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FF same for me. Asked my Onc why can't you have a test that requires us to have a big bowl of icecream before the test. He had a hearty laugh. Have to be careful about the contrast.

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Yes, yes, yes, but First defence can prevent the cold in the first place Xx I only ever get a cold when I forget to take the first defence!

Honest xx
Mx
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Solution for a cold :
1. Go to Boots and buy lemsip, cough linctus and Vicks ....
OR
2. Go to McDonalds and buy a large cheese burger, milk shake and mcflurry
I know what option is working for.me .
Hugs 🍟🍨🍔
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Oh Carolyn....MRI scan thread

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Umm....there is a lovely lady called Ilovemarsbars, think she posted on a monthly chemo thread

my brain has just walked off...do you ever get that?

 

and try first defence for colds( noone ever listens to me, sob)

moijanxx

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Hiya moijan
What donkey story ? Is it on another thread ..I haven't looked much lately.
Would u believe I have my third cold in 8 weeks ..I have been three years without one ..I think it might be the same one that's got comfy with me !!
Xxxx
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Nicky...I do hope your chin is all the way up!

 

will have to come down and bully you if notxxx

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Hello Carolyn,

 

missed you all. Did you see my donkey story? I was thinking of you when 

i posted it earlier...thought...now i bet Carolyn would not have done that...she would have eaten it all!

 

by the way...ooh, yesterday they were selling £20. Solid easter eggs yum yum...I had to walk off!

thought of you then tooxxx

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Hello moijan
Welcome back ..hope u had a good holiday ..think all UK has been getting nice weather.
Hopefully all the vitamin d will help our poor bones a bit now.
Hello everyone
Hope all well xxxx
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Hi Everyone,

 

esp ff and stilhere as they picked up on my mri chatter.

 

from what I was told by the radiologist...yes...the amount of fluid around the cells can say wether or how active bc cells are...this was a liver mri and yes the tumour that used to be discernable...took some extra searching for and was thought to be just scar tissue at my last mri....i also have bone mets tho, the one they can see

when mri ing the liver had reduced...... My tms have plateaux now...so will be interesting to see if theres a uturn.....especially as i opted out of day 8 last cycle.

 

anyway, am soon starting day 1 again, so will keep anyone posted who is interested.

 

 

i have been told to stay on eribulin 'until 'it stops working so that was a message for me there.

 

much love,

Moijanxxx

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Chris (Ladybird) , I wanted to mention to you that you can have a CT without contrast! I'm allergic to the contrast so have it without it all the time. Back in 2012 I was in the  hospital and they decided they wanted a CT with contrast. They started medicating me with steroids  36 hours before. When it was my turn to go into the machine it broke. They continued medicating me til they got the scanner fixed.  That was around midnight. I can't remember how much the amount of prednisone they had given me. I didn't even kniw they c would give you that much. We are talking in the hundreds of mg. I sweat so much I soaked my  clothes and the bed several times. I was so full of energy I probably could have cleaned the whole hospital. I don't know why but they also said I didn't need to come down off of them. I was a jittery mess for a couple days. They sent a pulmonologist in to see me and he told me to never have the CT with contrast again. He said that I shouldn't put myself at that risk with the contrast unless it is an emergency. Every time you expose yourself to something you are allergic to you can make the allergy worse.  He said for what they need to see in my lungs the picture Is fine without the contrast. I tell people all the time to ask if contrast is necessary! FF

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Yuk Silrata! I hate the a awful things they have you drink before some tests! You can put me in the big baby category for that! FF

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Thanks. I have to take the chalky ones. Taste horrible. Hope next time calcium will be ok.
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Nicky, My kindle always does that! Drives me crazy!

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Hi FF

I have no idea what my auto correct meant by 'room mendacious' what on earth? I can only guess 'recommendations' ? Anyway. I hope the rest made sense!

xx

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Nicky, Once I looked it up I saw Halaven. They call it Halaven here. Capcitabine goes by xeloda here. Palbociclib...ibrance. Navelbine....vinorelbine. That's the ones I can think of!

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Hi Marie Louise. I also can't stand the chalky, chewable Adcal tablets 😝 Unlike our lovely Carolyn - any excuse for a sweetie once a day, eh? This is why I stopped taking them, much to my onc's surprise my calcium has held rigid for 4 years so I don't see the need to take them. You can request caplets of Adcal which are like a paracetamol size caplet which you swallow with some water, again, not normally prescribes due to costs plus there is an effervescent one that dissolves into water. The reason they are prescribed with Denosumab is that it takes the calcium out of our blood stream to strengthen the bones, unlike the bisphosphonates which add to the strengthening presumably by using phosphates? I wasn't prescribes calcium supplements at all whilst on bisphosphonates but did have regular blood checks to make sure the calcium levels were OK.

FF Erubulin is also known under its manufacturers name of halaven and has been around for quite a few years although our NHS prescribing/authorising body dropped its room mendacious (due to costs - again) a few years back but it's now come back into the fold and is now prescribed without our oncologists having to get permission from our cancer drugs fund, or whatever they call it these days.

Enjoy the sun everyone, what a lovely day yesterday and set to continue until at least today, well that's in the South, not sure how everyone else is fairing.

Nicky x

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Hello
Yes the bone strengthener like zometa and denosumab do affect the calcium levels ..I have blood tests before each treatment .lucky enough mine are spot on ..I take one adcal calcium tablet a day ..yum ..got lemon flavour ones and I quite enjoy them ...I know some ladies struggle with the chalky ones.
Xxxx
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Does zometa have any effect on the calcium level? My calcium level goes down every time i take it even with calcium supplement . I have to stop taking zometa till calcium level is ok.
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Haven't had that one either! Will have to keep them in mind! Thanks!

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FF
It's not epirubucin ( that's the bright pink one that makes you wee go pink) its eribulin which I think is a newer one .
Thought I would mention it in case you are putting on your list for future !! A lot of ladies seem to be moving on to it now.
Hope everyone is enjoying the sunshine at the moment ...☺☺
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Thanks ladies for the info on epirubicin. I  have not had this chemo.

 

Moijan, Interesting tidbit on MRI's ! 

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Hi Moijan, oh that explanation of MRIs is interesting, I'm only given CTs but I suppose my tumours are measurable so they keep to the same process in a trial. It sounds as though your cancer is undetectable now? That must be so encouraging, fingers and toes crossed. Happy sunny weekend everyone xx

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Hi Nicky

 

Thank you so much for replying.  I have been on Zometa since Sept 16 and at my last scan it showed that the affected bone was healing so it is so far doing a good job. And the tamoxifen was holding back the liver met. I do take vitamin D tablets and I find them awful, like chewing chalk !!   It.just seemed that not many bone ladies were having zometa but I guess it's just my onc choice. 

 

I hope your new chemo is kind to you and most importantly that it works.

 

wishing you all a sunny weekend, ice cream for me today I think, a very large one !! 

 

Xx

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thank You , I am guessing its cost then , will ask my onc next time . I have missed mine , my bones feel still and ache now. need my DENUSOMAB XX
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Hi Marie Louise

Some ladies who have been on zometa for a long time (before Denosumab came along) have remained on it providing it's proving to work. If you have started only recently on zometa it could just be your oncologists choice. You could ask, it's certainly easier and quicker than being hooked up to an IV line every time, takes all of a minute to administer. Usually given in the stomach (subcutaneously) but can be given in the upper arm. Originally when it first came onto the scene, ie NICE approved it, there was a costining issue particularly in favour of the current bone strengtheners but when it was pointed out to many trusts that the administration time is so much quicker with less equipment involved and less nursing time I think many decided to move to it for new patients. It works in a different way to zometa (and the other bisphosphonates) but is meant to be a better solution overall. You will be prescribed Vit D and calcium tablets ,if you aren't already taking them, however I have rarely taken mine and my calcium levels have been absolutely normal, and very consistent, over the past 4 years since starting Denosumab.

Nicky x 

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Morning,

 

i was was just wondering if anyone knew why some ladies are on denosumab for their bone Mets and others, like myself are on Zometa ?  Maybe something I could ask my onc but I am always in such a hurry to get out of there I always forget in my haste !

 

xx

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Hi Stillhere
I did ask my onc re pet scans and he explained that Maris are the best way of checking my cancer status.... and that has been borne out as the ast straightforward MRI couldn'tt find the cancer as the Eribulin has killed it..... but the MRI scanner was then programmed to find the remaining scar tissue and showed that this is inactive.... ...something about the amount of water around the cells can show wether they are active or not.
Moijanx
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Sorry truffle shuffle
Didnt answer your question ..at my hospital you get it for three years and then it stops completely .
I have mine every six weeks now but the first year I got it monthly. Its very expensive so I heard £350 a hit .
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Yes back on denosumab ..had my first one Wednesday for three months ....oncologist was keen for me to have it.
To be honest my bones do feel better today ..coincidence I'm not sure .
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Hi,   

 

 I had chemo yesterday , but my DENOSUMAB HAS BEEN STOPPED , I USEDTO HAVE  MONTHLY , BUT CHEMO NURSE TOLD ME THAT NEW PROTOCOL IS FOR DENUSOMAB INJECTION NOW EVERY 3 MONTHS. 

 

oh sorry caps lock on again.  Has anyone else experienced this , hope iys not just my Trust saving money 

 

keep well xxx

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Hi FF

The Spongebobs are those of us on eribulin - it is made from sea sponges. Our thread in Treatments section is called

Chemo Buddy Needed - Anyone Currently on Eribulin...

 

Hi Carolyn - fab news about being a stable mabel. Are you back on denosumab again?

 

Love to all, have a good weekend in the sunshine.

Helen x

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😂 😂 😂 Carolyn, you are hilarious, nearly choked on my tea laughing! Saw my first swallow last Sunday, spring is here...even with one less ladybird!

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Its gorgeous weather here today and after doing weekend shopping and letting sons dog out for a pee. .decided to take my cuppa out into the garden ..on the garden bench was a gorgeous shiny ladybird ..all red and black ..so I thought I would sit beside it and watch it for a while ...well just as I sat down it decided to move and I'm afraid its now a squashed mess on the seat of my jeans ...
Its sad but funny as well ..only in my world.
Xxx
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FF
There is a thread here chemo buddy for erubicin ladies ..they call themselves the spongebobs ...which I think is really nice.
Have you had that chemo yet ? It seems to be popular here in UK now.
Hugs xxx
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Janette, I cringe when I see people in the chemo ward going through the hide and seek game with their veins! I  was having a C-section with my daughter and the hospital was extremely busy and falling behind schedule, so my OB decided he would help out  and IV me. I can't even tell you how many jabs, twist and turns, etc. I finally asked to lay down because it was making me sick. He said, "I'm really hurting you aren't I ?" I'm like yes! He says, "Maybe I should get someone else, I haven't done this in 8 years!!" I looked at him and said, You are definitely DONE!!" I feel people's pain when they are going through it!!!  FF

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Carolyn and Nicky, Apparently, I'm missing something?!?! What is the "Spongebobs"?????? 

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Hello Nicky
I was just reading on the other thread that you are joining the spongebobs ...I really hope it works for you. It's always hard to switch treatments as the existing ones become like a pair of old comfy slippers and you get used to living with the side effects.!!
It seems to be a very popular chemo now and so you will get a lot of help and support there from the ladies .
I'm just hoping that letrozole lasts for 7 years for me like Julie...
Xxx☺☺☺
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Carolyn that's just the best news Smiley Happy. .xx

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Hooray Carolyn, a Stable Mabel! Go out and celebrate - oh, I see you have done that already 😉

Avriela - sorry to hear that all was not quite so stable for you but at least your oncologist is on top of things and changing your current treatment. Keep in touch with all of us, we are here for support as well as a place to have a rant and let off steam when you need to.

Nicky x

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Jeanette
Ouch ..that hurts when the veins play hide and seek ..did u drink a litre of water and warm them up first ?
No haven't been eating cake or choc as I don't want my teeth going funny again now I'm back on bone juice ..but I've just had a nice Chinese take away and a trifle !! Oink oink🐷🐷.
Stable Mabel signing off with hugs xxxx
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Hi ladies, hope your all feeling well.
Well I've been to get my tumour markers done today and my veins did not want to play out! In the end i had 3 of them ganging up on them, got there in the end though.
While I was there I called in to see my bcn to discuss my denosumab, told her I'm struggling a lot more with pain /aches since being changed to 8 weekly so she has spoken to my onc who said she will have a chat with me about changing it back to 4 weekly next month when I see her for my CT results.
Carolyn, I bet you have overdosed on cake and chocolate celebrating your fantastic "Stable Mabel" news!
Hugs Janette xxx
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Corey that's,a long wait!! You will, need a huge supply of wine, chocolate, candles, and bubble bath! FF

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Just come back after a break, so pleased for you, Carolyn! Wishing you sunshine and chocolate!! Maybe not together....a gooey mess. Just shows that the hormonals can be so effective on their own. Not sure about the 2 scan types, I've never had a PET scan ( well, several ON my pets but think they were CTs...🐶🐶🐴🐴 ) I think that PET scans are more expensive so we only get the cheap stuff here! Someone better informed will be here soon, I'm sure.

To everyone going through a treatment change, thinking of you and (((((hugs)))) xx

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Hahaha I liked the way you expalin things Carolyn, especially when you mentioned donkey as a pet. And I am sure that CT stands for CaTSmiley Happy Poor animals they do not need thatSmiley Happy Love you all, thank yoy for your comments after I bursted out. I know that it is not easy for none of us, but you are so helpful. I am not that strong. 

FF, how many rounds of Chemo you had as a whole. I had only one, and it last cycle was last year 10.11. I do not feel like having another one so soon. Not that the previous was bad, do not take me wrong but I am worried of the long term side effects. Hope that letrozole will work. And if needed I may opt for taking ovaries out. Love you ladies

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Corey

I've asked this before as I'm a right donut but what's the difference from a ct scan to a pet scan ...does the later mean you have to take your dog ( or donkey in your case!) Too ...
Ha ha xxxxx
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hi everyone scan was ok but needle hurt going in. so now the wait begins 1 month. carolyn really pleased for you .