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Bone mets - please join in

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Re: Bone mets - please join in

Hieveryone I have not posted before but have been reading this thread.

Hi PMOL I too was diagnosed end of Dec with bone secondaries from original BC and new primary. Mastectomy was on then off then on again and am now recovering from surgery. That feeling of utter devastation waking each morning is so familiar to me but I have found like others have said on this thread that that state does pass. I have not yet gone a whole day without thinking about it but others have and I think with a bit more time I will get there.

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Hi girls... new at this 😉 Got diagnosed with bone mets on Monday... think I'm all over the place emotionally... was going in for a masectomy after my bc returned and they stopped the op due to the mets... now on hormone treatment (zoladex & letrosone) but just started... trying to get my head round all of this... nit sure I,make much sense!! 😥

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'Ohhh - you put your left leg in,  your left leg out, in out, in out, and shake it all about'🎤

 

 

Moijan

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Re: Bone mets - please join in

Hello ladies
Haven't posted here for a few days as to be honest couldn't offer any better help or advice than you have been given.
Cold, dark afternoon ..I've been watching " frozen" on DVD ....let it go ...let it go ...the poor dog has ear ache with my singing !! ( chocolate was involved too !)
Carolyn xxxx🎵🎵🎵
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Hello racer, lovely Moijan is right - the 7 on, 7 off is quite a well known regime for Cape. I think the Americans use it more than we do over here (my Onc claimed to not believe in it, but as Moijan says, she has been on it and plenty of other people have good results with it too).

 

Please do join us on the Xeloda/Capecitabine thread on the Treatments board. 

 

Hugs, and wishing you all the best. Barton.x

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Aah thanks Mojan. That has made me feel better. Think the blood results make you feel down. I had googled for info as well so driving myself mad . I will look at other thread tomorrow . Really appreciate the info . Take care xxx
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Hi there Racer,

 

havent crossed paths lately, have we?

 

its fine to have cape one week on and one off...that worked really well for me for about two years...can see why he is being cautious with you...obviously you need the right amount of platelets....

 

try not to get too fed up...totally understand why you are worried, but my onc too scans my bloods thoroughly and They probably all do!

 

these treatments play havoc with our body chemistry so its all a delcate balance....sounds as if hes trying to look after you really well........

 

also look on the Capecitabine thread...lovely Barton is a Cape veteran and may have some good advice/personal experience to share xx

love, Moijan💚💚💚

 

and...we all dread being told theres nothing else for us......but there are new drugs bouncing in off the horizon...take heart xxxx

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Thanks funnyface. I am leaning on Onc a bit but dreading what he will say. I feel as if I am a guinea pig. If I don't see any development I will arrange an appt with his boss but think he is struggling too. I don't think they are giving med enough time to work and just jumping to the present problem and elevating that symptom. I have always been awkward lol . Just trying to be realistic but not too negative or positive. I keep saying that they would not try different things if they did not think it would help.
I will keep you posted. I feel that I don't want to be too negative as. The hormonal Meds kept me going so hoping Chemo or alternative med will stabilise me and buy me some more time. Funny though my high temps have stopped this week and wonder if it was transfusion or just a long virus . Just keep going on a daily basis and at least they are seeing me weekly. Even the receptionist recognises me and uses my first name. Think it would be great if we could have air miles or reward point system for the waiting time/visits to Hospital .
Take care everyone and sending love to you all xxc
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Racer, You must be so frustrated I have not had any experience with this. I wonder if a different chemo might be better. Have other chemos done this too? Can you get a second opinion?!? I'm crossing fingers for you that the every other week might be your answer. It us crazy these drugs effect each of us and how everyone's cancer is different. No wonder it is so difficult to find a cure! Good luck! Please let us kniw how every other week works! Hugs, will be thinking of you! FF

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Hi everyone have not been on for a while. Basically it has been up and down . My blood results are unstable and was due to start capectibine think that is how u spell it. But because my platelets are low -19 one week and HB low. So one week I have had blood transfusion which has affected platelets . So following week small dose of vincristine Chemo to nudge platelets. Onc doesn't know what to do as complicated. So I said I am not on any significant treatment and could be still like this for the next few weeks so agreed to start Chemo tabs for 2 weeks and one week off.
Went for review after one week and platelets dropped to 18 so stopped Chemo tabs put me on steroids for a week and small dose of vincristine. Been for review today expecting transfusion. Onc said they are struggling with what to do. I get scared because I don't want to hear him say nothing else they can do . Blood results came and platelets are 39 which have not been for weeks. Onc has put me back on Chemo tabs but for one week on and one week off. Said platelets won't be good next week. Just want to keep going and feel fed up especially with holiday plans etc people are making. I know it is not their fault just cross with the illness.
Is anybody had similar experience ? Sorry to be fed up but as usual putting a brave face on for family who I know are worrying .
Thinking of everyone and just need some nice weather. Craving for Spring to come my favourite time of year . Take care everyone xxx
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Just a quick hello to all

Avrelia,,,,,congrats on the return to work:hope its going well.

Truff.....hope you are still feeling a bit more up beat. xx

Love to all. x

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Truffle, You certainly are not a wimp! You just had a lot put on your plate! I don't think any of us are wimps! This not easy!! FF

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Truffle shuffle
You are not a wimp ..with the dx you have been given you are being very strong and grown up and you will be able to pull up your big girl pants now once you know the treatment plan .
It's easy for me ..I'm still at the one a day little letrozole pill stage !! ( well and a bone juice jab and a adcal tablet!! )
Loads of hugs
Carolyn xxx
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 thank you , thank you,  that sounds so positive , xxxx 

 

 will get reading , you are all amazing on here , make me feel like a wimp , xx

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Oh Ff, that must have been a nasty shock. Glad it's safe and avoided your house.

 

Truffle-shuff - sorry I haven't posted until now. So sorry to read of your worries. I don't have any advice to offer, but JulieD and Moijan have, I hope, managed to put your mind at ease a bit with all their wonderful help. Just wanted to wish you all the best for your treatment, etc.

 

Yes, Carolyn, it's been quite quiet on here lately. Hopefully it means everyone is just getting on with things!

 

Hugs. Barton.x

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Good morning FF
Wow hope u r ok with the tree but just think the logs will useful for the log fire your hubby hasent built yet !!!
We have thick fog here but its ok not too cold .where is everyone ??
Carolyn xxxx
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Quiet on here today! Had a few minutes before I go to work, so wanted to check on everyone. Truffle I've been thinking of you, and glad you were able to read some stories to give you encouragement! I hope you get moving quickly with a plan. I know sometimes when things are happening quickly it can put us in a spin! On the other hand though if the doctors drag their feet too long, our imaginations get the best of us! Please try to squeeze in some fun, in the middle if all this. Treat yourself to something you have been wanting!

 

OMG, a tree just came crashing down! It didn't hit the house but it sounded close. Must go look! It's an extremely windy day and going to get worse as the day moves on! OK, all is well! It's leaning into another one and should stay there! Plus a huge branch came down out of another tree and is laying across the branches of several smaller trees. Darn wish it was across the driveway, so I could stay home today! Have a great day! FF

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Dear Truffle,

 

I'm so pleased to hear you are feeling a little more hopeful.

 

I  remember when I was first dx all I  wanted was to know that it wasn't an immmediate death sentence and that there were people out there living with what I  had. The links Moijan has given will hopefully further assure you that yes there are people with brain mets that not only continue to live but live well.

 

Hold on to hope.

 

Lots of love and masses of strength xx

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Hi Truffle...

 

The

 

'Nearly four years in ....and brain mets please help'

 

 

thread is under 'Living with secondary breast cancer-Treatment and medical issues'

 

there are a couple of posts about it from two other ladies....one is undergoing wbr just now another has had cyberknife.

 

love and Hugs,

 

Moijanxx

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 Thank you, yes it has lifted me so much , It was like being hit with a sledge hammer . I do feel more poritive now.  I had a couple of lovely replies on private message , I have been trying to reply , but , the link seems to be taking a nap . so if you dont get a reply from me soon, honestly all info was brilliant and has given me hope .

 

 keep well xx 

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Hello truffle shuffle
Sorry I was going to reply to you but Julie did such a lovely reply with so much help that there was nothing more I could say but I will send you loads of hugs and wish you well with whatever treatment you get .
Carolyn xxxx
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   Thank you so much for your informative reply Julie d.

 

 It has lifted me , I am planning my funeral at present ,  and The thought of WBR , sounds very barbaric to me , but you have given me some hope that this could be doable for me , oh and breath !!!! .  i could handle the liver , bus as you sat the brain, is me, its personality , its memory its human . so to hear that I may be ok after this and not a vegatable is very reassuring.

 

 bless you and keep you well , so very grateful xx

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Hello Jeanette
Are you ok? You haven't been on parade for a few days ...I tried to pm you earlier but it said your pm was disabled !!
Carolyn xxxx
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Hi again Truffle,

 

hope the link worked?

 

let me know if notxx

 

there are few ladies on there who may have ideas xx

 

Moijanxx

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Go for it Funnyface love B xx
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Hi Truffle Shuff...

 

So sorry you now have this new worry....fortunately, im able to point you to a newish thread which you may find useful. The thread has quite a bit of helpful info on it now.and others who are in your position or have been..do have a look.

 

 

and lots of hugs for you xxx

 

https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Nearly-4-years-in-and-brain-m...

 

Moijan💖💖💖

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Truffle-Shuff,  Well that result , I'm sure put you in a spin. The liver seems to respond well to treatment for most. I wonder if it is bc of the livers own  healing ability? Do you know what chemo you are going on? Have you had capecitabine? It can pass through the blood/brain barrier. Have you had any appointments with I'm assuming a neurologist/oncologist/radiologist team to discuss your plan. My experience with friends is that they have tried to have each tumor zapped if possible, saving whole brain radiation if absolutely necessary. You need to find and read some positive stories on this! There are woman out there who have done wonderful for years. It's OK to be scared, I know most of us would be a basket case! We are here for you. FF

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hi truffle stuff,

Sorry to hear your latest scan results and understand how frightening it must all be. I  only have bone mets so can't speak from personal expeience but I  have lived with  SBC for more than six years now and I  know women and have quite a few friends who have liver mets and I  also know a few who have brain mets.

 

First the liver mets. The liver is a remarkable organ and is very good at working on greatly reduced capacity,in addition to that treatments can be very sucessful for many years. I  can' give you exact timings etc but I  do know tat some of the liver mets women I  know have been living with it for 6 or 7 years plus and though they may have had to change reatment at some point are still doing well.

 

Brain mets are scary for anyone to think about, because we see the brain as being 'us'. The treatments you get for brain mets vary depending on exactly where they are, how many, how big ....There is surgery, whole brain radiotherapy or targeted radiotherapy (steriotatic/cyberknife). I  have known women who have had these procedures, some of them have had more than one type ie surgery and then later radiotherapy. Most of those I  know who have brain ets have been diagnosed more recently, about 2 years ago. The treatments can make you very fatigued, you might get thinning hair, headaches for a while and sometimes speech and memory suffer for a bit but none of the women I  know has ever said they regretted having treatment and they do seem to improve as time passes and things settle.

 

I  don't know if this has been of any help to you, I  certainly hope I  haven't added to your concerns. What I'm trying to say/demonstrate is that even when we fear the bleakest outcome there are people out there that prove you can be treated and continue to live a relatively normal lfe.

 

I  send love and strength to you - keep in touch xx

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  Hi,  

 

Sorry may be in wrong thread , but I need your wonderful thoughts and experience. I have been treated with Fulvestrant for bone mets for 6 months. scans yesterday show , liver and 3 mets in brain. terrified, will be back on chemo for liver , then if that stabalises will be offered hole brain radiotheraphy, now that scares me , surely that will leave me with lots of problem.

 

 Does nyone have experience of this

 

thank you keep wellxx 

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Hiya sue
All the best for your next round of scans on Monday ..yep what with the nail pins and radio active stuff you will be a force all of your own ..bionic man and superman ..you should be quivering in your boots.
Carolyn xx
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Hiya moijan
Not really a George Clooney fan but he can pour my coffee any day as long as he brings choc as well.
I'm having a bit of a choc health kick ..switched to dark stuff now and with peppermint in middle for my heartburn !! So am trying ..haven't put on any weight in six months since I was last weighed so must be grateful for small mercies !!
You sound chippy this morning so let's think that your chemo is working well.
Carolyn xxx
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Hiya FF
Well your scan results are a bit yes and no but mainly yes as you do manage a good quality of life with ibrance and cope with work at the senior centre so its doing what it says on the tin!!
I'm sure the sunshine on your road trip in April will help ..think we all should be issued with bottled sunshine ...hate the cold weather as it sneaks into the bones and causes so many creaks.
Everyone here in UK seems to have colds ..sniffles and coughs ..it's a health hazard just going out with germs flying !!
Carolyn xxx
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Maldives...can you be a little more specific about 'George'.? iguess Carolyn could tell you, I have been known to make the odd . Risque hint on the forum!

 

 

Carolyn..re chocolate....im convinced there are beneficial substances in choccy, particularly black choccy.....wonder if major consumption levels works against them tho?  But chokky overdose...what a lovely thought!

 

also...'sell by dates'. i dont go much on those eitherxx. Just set up home in the fridge?

 

in a funny mood today after a slightly better sleep. 

 

Moijanxx

 

 

oh and Avrelia...congratsxx

 

 

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Haven't got it yet. I wouldnt bother with coffee if george came with it. Have a fab weekend girls xxxx
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Im sure you will make it to florida just tell them your going xx
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OK, My oncologist and had been in India, and the oncologist I don't like had given me my scan results. He had said stable, some improvement in some areas and a possible growth in one area. My oncologist went to the hospital to go over it. Yes there are improvements and stable  areas. There is one area in the bottom of my left lung that they started watching in Oct. I knew this bc I'm going every 3 months insstead of 6. This area was suspected of being ground glass again. Ground glass is haziness in lung. Also, this time there is a new 1 cm nodule. The radiologist and the oncologist took a closer look at the nodule and said that they aren't convinced it is cancerous bc it's make-up looks different than a cancerous one. They said the haziness could be infection, a reaction to ibrance or cancer. They think it's from infection or ibrance. I do think it's from the cancer but have agreed not to change meds. I had ground glass before in same lung, but top of lung. Ibrance made it disappear. I find it funny that now insurance could be the could cause of this ground glass. Also, I'm very leary of this new nodule. I also find it strange after all this time that ibrance is still shrinking other areas that I have a growth. I feel fine so we are going with that. I wouldn't be surprised that my ibrance journey will  be over soon. Hubby and I are trying to go to Florida for our 35th anniversary. We want to leave April 26th. My appt. is March 30th. I hope I'm able to go. I spent my 30th anniversary in the hospital. I don't want to have my 35th ruined! FF

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Oh Sue that tassimo coffee machine is the one that George Clooney promotes isnt it? Does he come complete with the machine to actually pour it for you as well ... if so I might get one as well !!!

 

My retail therapy was boring stuff really ... but flanelette duvet covers so it will be all cosy and snuggly tonight in our household .. lots of mmms and aaghs when we get in them I hope !!

 

Im also thinking of a new bed ... been looking online but cant decide whether  to go all romantic with a white metal one with hearts and crystals or sensible oak wood .... decisions decisions !!!

 

FF .. hope your visit to oncologist goes ok and things are all good.

 

Happy days

Carolyn xxxx

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Maldives, I haven't heard of a tassimo coffee machine. Will have to goggle it so I can keep educated!

 

Stresshead, I eat a lot of veggies, but do you mean 10 servings! Like a 1/2 cup of each? I don't think I could eat that much! I have been eating a healthy veggie soup for lunch. It has cabbage, carrots, onion,garlic, green beans, zucchini, broccoli, diced tomatoes and broth in it. It counts as 0 points on the Weight Watchers program. Only 50 calories in one cup. I've been eating the soup instead of salad for a few days. I was bored with salad. 

 

Carolyn, I love chocolate too!! I don't buy it bc I don't have any control if it's in the house. Although, I will say there was some here over the holidays and I did very well at saying NO every time it called out my name! I don't want to have to deal with that in a daily basis!! I also don't go down the candy isle. 

 

OK out the door to see oncologist, she is back from India! FF

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Ohh im going to huy myself one of those tassimo coffee machines. My daughter brought one last week and its the best latte ever. The hot chocolates supposed to be good but im not into chocolate.
Who else is splurging out? Xx
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Hello ladies and our new male Chris
Thought I'd just pop in and say hello and hope everyone is tickity boo ...
Sun is shining here but very white and frosty but hey hoo ..soon be spring and summer again.
Did a bit of retail therapy yesterday as we are all slipping with our shopping habits lately ..come on get shopping again and splash the cash ...
Carolyn x
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Hello avrelia
Glad u have finished your treatment and can now look forward to getting your strength back ..it's savage treatment and takes time.
Carolyn xxx
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Hi sweet ladies, hope all of you are fine. Just popped in to say hello before I start work. Me have finished Chemo(for the time being) and now on Tamoxifen. Have never had my period since I started it almost 2 months ago. First scan showed some improvement so I guess that they rely on these little white pills now to make it improve more....

Life is beautiful, meanwhile, when you do not have to go that often to hospital.Smiley Happy Although to be honest I feel much more tired now than when I was on chemo, perhaps due to the few kilos I put on around Christmas Holidayds.Kisses to all and have a great day.

 

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Hello stress Head
Oops ..your homeopath would probably keel over with a heart attack or something if he had me as a patient !!
I did all the healthy stuff from the Jane plant book at primary stage back in 2004 ..wouldnt even drink tap water etc etc but now im laid back about it all as i have a sell by date now !
But to be honest ..I have 2pm choc but do eat fruit and veggy as well but not the amount your homeopath says ....sounds loads and I would be "purping" all day !!
Carolyn xxx
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In fits Carolyn with the image of you in your crocs on your trike weighed down with chocolate....hilarious. I went to the homeopath yesterday and we got onto diet...should be eating fruit by the bucketful and 10 veg a day as well as supplemets...no mention of chocolate thogh i'm sure wholenut must count. Has anyone ever proved that chocoalte is bad for your immune system??? seriously though, if you mean it, go ahead and get one. Ive even thought of an electric bike but if the trikes are that much god knows what an electric one would be!!! think i'll have a freddo bar while i think about it!!! x

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It all started well today but then I realised my stash of twirls was a five pack and not a four pack so I'm as high as a kite on chocolate.
Promise ..no more mischief from me today .ha ha.
Carolyn 🍫🍫
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Oh good grief! Now what have I started? Nooooooooo!!! Although the cheese scone is agreeable!

 

Hugs. Barton.x

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Hiya Barton
If I hire a bike ..then you should as well ..then after we have had our cheese scone and coffee we can go for a cycle ride !! Ha ha .
Standard outfit will be lots of Lycra, crocs and a baseball hat !!!! Think the little men in white coats would be called !!
Carolyn xxxxx
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Hello Carolyn, if you are seriously thinking cycling might help you, but don't want the expense of buying something in case you can't do it,  why don't you hire something from the place down near the Quay (Saddles & Paddles?) for an hour? Or am I just being gullible again? Are you having me on? If not, good for you! You're a braver man than I am, Gunga Din!

 

Hugs. Barton.x

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And your little dog Toto too!! Carolyn years ago our neighbor got a DUI and drivers license is taken for a year. Her husband was so pi$$ed off he would not drive her anywhere or take over her chores like grocery shopping. She bought one if those bicycles with a motor. She rode it with her basket to the grocery store. They had a mailbox at the post office  instead of home delivery. She would ride it there too. Well, one day I saw her and she was hunched over and pedaling (not using motor) hair flying, she looked like the witch from Wizard of Oz. A couple days later my other neighbor called me and told me she saw her and h w she looked like that witch. We were giggling over it for days bc w e both thought the same thing. My husband told us we were both mean. He said at least she is trying to handle her mistake. Well, the next day he came in the house laughing with tears. He said he just saw the neighbor and coukdn't help himself, that we were right she looked like the witch!!!

 

My daughter says it's sacrilegious to drive past Dairy Queen (soft ice cream) without stopping!!

 

Croc haters. Crocs are wonderful on your feet, if you have sore feet from capecitabine!

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Lol you and your chocolate.i dont really like chocolate but im eating bags of mint creams or sour jelly sweets. I feast at night on them. Can only buy thwm at hospital so i clear thier shelfs out. Lol xxxx