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Bone mets - please join in

Barton
Member

Re: Bone mets - please join in

Carolyn and Moijan - I am disgusted with you both! You, Moijan, for feeding a Mars bar to a donkey (what a waste of a good Mars bar!!!), and you, Carolyn, for laughing at the poor donkey! Someone call the RSPCA!

 

Hugs (also laughing). Barton.x

 

PS - Carolyn - yes, still on for coffee, and no thanks - I'll pass on those knickers!

funnyface
Member

Re: Bone mets - please join in

Janette, Many years ago when on abraxane after a couple months all of my finger nails got a red line going across them. Then they all turned white/gray, then they started to smell and ooze and became very tender. It took them about a tear to heal and return to normal.

 

Over the years of treatments my nails have changed. Mine used t o have a nice curved arch to them. Now some of them are flat and if they get more than about a 1/4 inch long  some of them want to curl under.I also get a lot of hang nails on ny hands and feet. 

 

I don't know if all if this is treatment related or age. FF

 

funnyface
Member

Re: Bone mets - please join in

Carolyn at least they are not in a knot!

rosie53
Member

Re: Bone mets - please join in

Hi ladies.
Barton, I also don't mind the contrast drink you have before a CT, I get a choice of 3 flavours, blackcurrant, orange or lemon (I think it is) I also have the contrast injection too.
By the way, has anyones finger /toe nails gone really dry and unhealthy looking whilst being on treatment? (Only a trivial thing I know compared to some side effects) mine look horrible these days.
Hugs janette xxx
Carolyn52
Member

Re: Bone mets - please join in

Hello Barton
No.moijans donkey story was on another thread ...she fed a donkey a mars bar and its teeth got stuck together !! Sorry musent laugh...
Do u want to borrow the big girls pants I've offered for oncologist visit? But they will need to be washed before you return them !
Are we still on for coffee Thursday ? Or have things changed ?
Xxxx
Barton
Member

Re: Bone mets - please join in

Hello all, hope everyone is keeping as well as can be, except poor Carolyn and B! Colds!!! This time of year? It's just not on!

 

Carolyn, I think Moijan means the baby donkey (Corey's), that you thought was a lamb, when she refers to the donkey story.

 

Sorry to buck the trend, but I think the drinkable contrast for CT isn't too bad - tastes kind of aniseedy. I have only had that once, though - usually have the iodine injection thing that makes you feel all warm and as if you have wet yourself!

 

Good luck to anyone having scans, changing treatments (Nicky? and Angela60), etc.

 

I have an Onc appointment on Thursday, so went to docs for blood test after work today only to be told they have had to cancel as the spinner machine was broken! Will now have to go to the hospital tomorrow after work and sit and wait. Really annoying.

 

Hugs. Barton.x

Carolyn52
Member

Re: Bone mets - please join in

Big girls pants.jpgto all ladies waiting for scan results etc ..you can borrow my big girls pants here !!xxx

funnyface
Member

Re: Bone mets - please join in

Chris,  I don't blame Ladybird! That stuff is gross! You reminded me that I need an eye Dr appointment. I had one cataract done years ago, but it has some car tissue build up that needs corrected. Plus I need the other eye checked. Yuck more doctor appointments! FF

Ladybird
Member

Re: Bone mets - please join in

Hi ladies
FF
Thanks for the tip re contrast. Ladybird's just being a baby! She only drank half a litre and pulled a face all the way through it.
Poor thing's had a cataract done yesterday and she's feeling quite miserable.
Time for a pub lunch methinks!
X
Carolyn52
Member

Re: Bone mets - please join in

Sorry Bon. ..you have joined the very elite club of sneezes and wheezes !!
I find lemsip ( other brands available!) Works a treat ..had two good night's sleep now so hoping this will move on and party with someone else !!
Hugs xxx
bonariensis
Member

Re: Bone mets - please join in

 

bonariensis
Member

Re: Bone mets - please join in

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

nicky08
Community Champion

Re: Bone mets - please join in

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 🌞

 

Srilata03
Member

Re: Bone mets - please join in

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.

Moijan
Member

Re: Bone mets - please join in

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
Carolyn52
Member

Re: Bone mets - please join in

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 🍟🍨🍔
Moijan
Member

Re: Bone mets - please join in

Oh Carolyn....MRI scan thread

Moijan
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
Moijan
Member

Re: Bone mets - please join in

Nicky...I do hope your chin is all the way up!

 

will have to come down and bully you if notxxx

Moijan
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
Moijan
Member

Re: Bone mets - please join in

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

funnyface
Member

Re: Bone mets - please join in

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

funnyface
Member

Re: Bone mets - please join in

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

Srilata03
Member

Re: Bone mets - please join in

Thanks. I have to take the chalky ones. Taste horrible. Hope next time calcium will be ok.
funnyface
Member

Re: Bone mets - please join in

Nicky, My kindle always does that! Drives me crazy!

nicky08
Community Champion

Re: Bone mets - please join in

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

funnyface
Member

Re: Bone mets - please join in

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!

nicky08
Community Champion

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
Srilata03
Member

Re: Bone mets - please join in

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.
funnyface
Member

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Haven't had that one either! Will have to keep them in mind! Thanks!

Carolyn52
Member

Re: Bone mets - please join in

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 ...☺☺
funnyface
Member

Re: Bone mets - please join in

Thanks ladies for the info on epirubicin. I  have not had this chemo.

 

Moijan, Interesting tidbit on MRI's ! 

Stillhere
Member

Re: Bone mets - please join in

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

Rose47
Member

Re: Bone mets - please join in

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

truffle_shuff
Member

Re: Bone mets - please join in

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

nicky08
Community Champion

Re: Bone mets - please join in

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 

Rose47
Member

Re: Bone mets - please join in

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

Moijan
Member

Re: Bone mets - please join in

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
Carolyn52
Member

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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 .
Carolyn52
Member

Re: Bone mets - please join in

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 .
truffle_shuff
Member

Re: Bone mets - please join in

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

helen44
Member

Re: Bone mets - please join in

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

Stillhere
Member

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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!

Carolyn52
Member

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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
Carolyn52
Member

Re: Bone mets - please join in

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
funnyface
Member

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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

funnyface
Member

Re: Bone mets - please join in

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