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Bone mets - please join in

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Re: Bone mets - please join in

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 .

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Carolyn, Happy you are stable! Thankful that we don't all get bad results at the same time. We can hold each other together better. FF

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Avrelia, I'm sorry your treatment has failed. We go for our scan results with such hopes that all will be OK! When it's not there is fear all over again! This is such an unfair road we travel! Hopefully your next treatment will kick butt! I'm ER + and had always done chemo. The last couple years was my first hormonal. Wondering if you might need chemo for a while. Hugs!!

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Hi girls

 

carolyn that is great and great encouragement for those of us on Letrozole.  😉

 

Avrelia, I'm on zoladex (ovary suppresant) with letrozole and zometa (bone strenghtener).  It is do-able, the worse side effects for me have been the back spasms which have left me in bed BUT they happened after the first dose and sinc then it seems to have been better (3 zoladex and 2 zometa).  The other side effect is the hot flushes which have me playing hoke koke with the duvet at 3am 😴 But other than that it's been fine.

 

hope it's a good week and you aer all enjoying the few rays of sunshine we are having! (At least in Pembrokeshire!!) xxxxx

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Thanks everyone, no i think I have finished my post Carolyn, it is just a bit chaotic though...Anyway, Daisty, I know what you mean about forgetting I am in such a situation, I do not post and read coz i am forgetting, and luckily I do not have any major syptoms, it is just not encouraging at all. A friend of mine has sugessted weed oil. I think I will give it a try as well, but I am not 100% sure. She will be doing a charity walk in order to raise money for me and for another friend of hers who has got cervical cancer. Bless her. My bestie is coming on Friday to visit me, and I am thinking of taking her to a streepteeze barSmiley Happy Shortly speaking that is all about me, after two glasses of JBSmiley Happy God Bless you all

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Hi Avrelia

I just came onto the forum tonight after not being on for quite a while (think I've gone into denial about the whole situation and haven't wanted to read much about anything).

Anyway, enough of that.  I just wanted to tell you that I have been on the ovarian suppression injections (zoladex) since May 2016 when I was diagnosed with primary and secondary cancer to the bones from the outset.  The injections are bearable believe me and although the side effects can be a little annoying they are most definitely do-able.  I am also on Tamoxifen as I am oestrogen positive and Ibandronic acid (bisphosphonate) to strengthen the bones.

 

Just wanted to let you know.  I hope all goes OK for you and will keep you in my prayers.  Debbie x

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Thanks Bon
Phew I hope I sleep better tonight ...no one but you ladies here understand the scan results stresses .
Avrelia
It's nice to see you posting but it seems your not finished quite yet but you have done the worst bit ..chemo ...so the next stage should be a bit easier hopefully.
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Carolyn that's great news! Have been wondering about you all day.

 

Avrelia. Hope your new treatment will be an improvement on what you have been having. It must feel like a a big step to take.

 

B xx

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Hi there, have just been back from the appointment with the oncologist. Had my scan last week, and things are not as supposed to obviously, as they are changing treatment. The doctor says that I do not have new metds, exept one new lyph node on my neck, which she would need to biopsy, and as a whole the lump in my breast has not shrunk more,on the contrary it might have got bigger with a milimeter or two, and she was not happy with the bones response. That is why she decided to cahnge Zometa to Denosumab, she would add an ovary supression injection every month,change Tamoxifen to Letrozole and send me to a Gynecology team to check my ovaries. She said that they might decide to have them removed, but I do not know yet. I went there alone and luckily she presented me the news very openly and humanly, but I called my husband and I cried over the phone for several minutes before I could go back and take the first ovaries supression ijection. I feel like starting the batlle AGAIN. Hope that this time it is going to work more. Anyone in the same situation? Did anyone have her ovaries removed. My cancer is Estrogen positive. I am sorry but my English today is not the best one. I shall try and keep my head above water

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Corey, I hope your scan went OK? And the trip to Plymouth. Do let us know how you get on when you get the results.

 

Hugs. Barton.x

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So pleased for you, Carolyn (or should I call you Mabel?)- excellent news! Long,may it continue! Good old Letrozole. Actually - I take it your teeth have drastically improved, Carolyn, if you had the Denosumab jab? I do hope it is good news there, too.

 

Hugs. Barton.x

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Just brilliant Carolyn!! 😆😆
Hugs Janette xxx
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Woohoo, fantastic news.

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Hello ladies
Just call me Stable Mabel ..my scan results show no progress or change from last scan June 2016 ..so really pleased ..phew clinic was running an hour late so stress got worse and worse.
So ..I love you letrozole and denosumab and thank you . Xxxx
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Corey, Hi I am from India. I live in Calcutta. Did you know someone of the same name in Somerset. All the best for your pet/ct scan result.
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Carolyn, Good luck tomorrow!! Wishing you the best! 

 

Girls, I agree, we were just unlucky FF!!!