Bone mets - please join in

[bonariensis]

I had a CT on my head to begin with but since then it has been MRI scans.Went through a period of feeling dizzy, nauseous and even confused but the MRI scans have shown the tumour in my head as stable so I put the symptoms down to side effects or lack of sleep. Once they started they got worse probably because i was anxious

[julzd]

Don't I know it carolyn I've had five fillings a crown and one taken out its crazy x x x

[Carolyn52]

Jultz.
When I had chemo ( 2004) as soon as I finished spent nearly a year going dentist for fillings and extractions ..it's plays havoc with teeth ...
Xxx

[julzd]

Sharon hope your doing well ❤❤

[julzd]

Thanks Sharon I will try those tablets for joints x x

[julzd]

Hi jannette I've had a headache for a few days and things have been crossing my mind I even woke up at four this morning when I got up my face was swollen and my lip I totally panicked couldn't get an appointment at the doctors so went to the dentist I have an infection in my tooth but my tooth hadn't even been that bad so it could be anything ❤❤❤

[Carolyn52]

Jeanette
That's positive and hopefully you will be able to put your mind at rest .
What a lovely site this is ......when one of us bleeds ..we all do .
We're happy for good scans results and sad when one of our ladies has a " wobble" .
Just had a nap ( unusual for me) but its so hot ...had my bar of orange aero so think I had better pop into the cyber cafe where there are no calories to worry about.
Hugs xxx

[rosie53]

Thanks ladies, bcn has rang and I have explained things,  she is going to email my onc and get back to me once she has replied. 

Hugs Janette xxxx 

[JulieD]

I  agree with the others. The headaches could be anything, maybe you weren't hydrated enough, maybe you're gettig some form of migraine, possibly you are sleeping in a position that puts a strain on the neck and causes headaches .......The important thing is that if it is worrying you you need to speak to your team and get your mind put at rest. Hope the BCN gets back to you and you can start to feel a little less worried. A big hug coming your way xx

[Moijan]

Well done Jannette, just thought, sometimes a neck massage from a partner or friend can help tackle a headache... lots of love...we are all here for you. Hopefully the bcn will get back to you....but leave it for a little then try again.

moijanxx

[funnyface]

 Jeanette, I agree, go get it checked out. Worrying can make your headache worse and upset your stomach. You will just feel worse without answers. FF

[rosie53]

Thank you ladies for your advice, Carolyn I'm love, just been keeping busy and trying to ignore this headache in the hope it will bog off!  I've rang my bcn but she was out of the office so waiting on a call back.

Hugs xxxx 

[Carolyn52]

Jeanette
You've gone quiet ...you are probably sat at home , worrying and staring at Jeremy Kyle on the tv but not watching it !!
Rant and rave but keep posting here as we cyber pals can't help you if u do the silent thing.
Hugs xxx

[andrea_carts]

Hi Janette, if you are worried ask for a scan, nothing else will put you mind at rest!

It sounds very familiar! I had a brain MRI on Wednesday! I knew two people who had brain mets and it was playing on my mind,'it's the only bit they don't scan', and I have a lots of headache so told onc and she arranged one, she wasn't worried but did it so I'll stop worrying, very understanding. I hate MRI as slightly claustrophobic....

Waiting for results, see her Monday so keeping very busy this weekend......

Andrea xxx

[Moijan]

Hi Jeannete, yes, I agree with Carolyns suggestion. I had visual changes and the eye clnic asked m onc to do an mri...which he did arrange..all was ok in the brain, so that was very reassuring. Am sure they would do one if you are really worried. Re ct, well they might, but honestly is prefer an mri!

if the headaches do go away, could it be some form of migraine? That can cause nausea and sickness...as can anxiety too.

keep us posted..hope it gets better

Moijanxx

[Carolyn52]

Jeanette
I must have physcic powers ....I knew something was wrong and almost did you a pm.
Could it just b the hormone injections or letrozole causing headaches as remember you body is being starved of oestrogen now?
If you do feel worried ..ask for a mri scan and get it checked out to put your mind at rest.
The c likes to cause worry and stress as its winning then isn't it?
Sorry not much help but hugs xxxx

[rosie53]

Morning ladies, hope your all keeping well, I've been a little quiet this last week or so. I've had a niggling little worry, hoping my cyber buddies can help me out?  For around 3 wk now I have been struggling with headaches, they seem to ease off for a day or so then come back with a vengeance! This week I have also been feeling sickly, so obviously my mind is playing the "omg it's brain mets card"!!! Only saw onc about 3 wks ago and markers dropped significantly and stable CT but they don't scan the brain on CT do they! 

Any info / advice please? 

Hugs Janette xxxx 

[Moijan]

Sharon, yes I know the medics wont discuss it. However i believe some studies have used it to see if it relieves side effects of chemo...so maybe things are changing slowly

Moijanx

[Moijan]

Dear stresshead, I have heard of Manuka honey being used for wounds but I think its been sterilised...yes Manuka Honey is good for lots of stuff, but honey has some strong bacteria of its own that could cause problems for babies etc, so vulnerable ladies like us need to be careful. I think, if I was ?  NUtrapaenic I wouldnt take it.    I take it in herbal teas.or on toast for a comfort bite( a bit like Carolyns chocolate!) they use it in a special toothpaste too.

Moijanx

[scratch]

Stress head iv read on here that the hospital can give cream for skin Mets..but I'm sure there's lots more you can explore.........................
Mojan..no.one will discuss cbd oil in medical profession...xxsharon

[scratch]

Carolyn yes missing daughter and baby.but house much tidier 😊...and also yes iv bought them fridge freezer.microwave and lots other bits.but today I thought I will get a new carpet for their old bedroom as I decorated it last year but wfnt pay for carpet then as I know how messy babies are.so carpet coming next week.husband doesn't understand why when no.one lives in there now
But I just ordered it anyway😊..now planning sofa bed for there too
.😊 keep spending😊

[scratch]

Stress head will let you know about cbd oil..although it may all change after oncologist on Tuesday..but iv had no weird side effects.iv also heard of mistletoe and iv heard of frankinsense .its taken me a year to decide yo even try This cannabis oil..i think maybe I should only introduce one thing at a Tim to make sure of side effects.but my mind is open to it all....my last chemo was made out of trees..and the chemo capecitabine I had was made from capers/peppers.so I will see what oncologist has up her sleeve on Tuesday
Take care Sharon.x

[scratch]

Jultz try seven seas glaucosamine jointcare tablets they are harmless and helped me when o was on letrozole
..still take them now
Take care sharonx

[julzd]

Hi janette yeah I'm like a constipated duck too haha I like that I'm going to think of that when I stand up lol its a nightmare even getting out the car as you say just takes a few mins but it's a pain julie ❤❤

[rosie53]

Hi julzd, since the started on letrozole in October last year I really do suffer from aches and pains. Like you if iv been lay or sitting for ant period of time I walk like a constipated duck! It takes me a few minutes to straighten up, even the soles of my feet hurt to walk on. 

Hugs Janette xxxx 

[julzd]

Hi I had scan results for osteoporosis bone scan they said my bones were fine I was a bit stressed as I've been all aches and pains but the nurse said this can be caused by letrazole or zoladex I'm like an old woman when I've been sitting a while or when I first get up on a morning does this wear off or will it be like this all the time ? 💖💖

[Carolyn52]

Stress head
I think if you want to go the alternative route you need to see a specialist as some vitamins work against others and its knowing what is what.
Manuka honey is safe though ...I posted before but my son's dog had cancer in his leg and had a huge lump/ tissue cut out but the wound just wouldn't heal with all the lotions and potions ..as a last resort vet prescribed the honey ...well 3 days and it repaired and within a week ..he was running around as good as new.
I know it sounds funny comparing you to the dog ..ha ha but its worth a try and its on special offer in Sainsburys now !!
I have pm you. Did u receive it ?
Xxx

[stresshead]

Sharon, i too am interested in cannabis oil as i dont think i have many options left. No one in the medical circle seems to want to discuss it and i have no idea how to source it. I am going to ask my homeopathist again when i see her. Please let s know how you get on with it.

I have also heard mistletoe mentioned...anyone any knowledge?

I too have heard of different oils but it seems you have to be extra careful what you use...i have skin mets and am sure i read somwhere that something could be applied topically. If anyone has any info i'd be really grateful

I know mankuka honey is supposed to be good fro skin conditions, ulcers etc bt dont know of anyone who has used it...again if anyone has any info i'd love to hear it.

Best wishes. xx

[Carolyn52]

Hiya ladies
How r u all today? ☺☺
Yes you guessed I'm home all day today as have been out and about all week ( spending money too) so hubby is threatening to surgically remove the phone from my hands as I have been tapping away all morning ..battery will go flat soon so you will be free of me for a few hours .
Just munching a bar of cadburys choc with Turkish delight ...yum ..bigger knickers for me.
Xxx

[Moijan]

Hi Sharon

some of my bone mests did shrink a little some time ago, I am never sure if its the Zometa or the chemo tho.

i am totally on your page about wishing tumours would shrink!  I often think about trying extra little things like oils...I read that just inhaling certain oils can be beneficial...trouble is, theres little research to back these things up...hopefully soon there will be

our hospital has a drug information line sttached to the pharmacy, it might be helpful for you to see if yours has one..they always warn us about taking extra drugs which could conflict with treatment or reduce its effectiveness.....i also find that the Pharmacist in Boots is pretty good just to check over the counter stuff with.

i find myself contantly checking if I want to try something new.

looking forward to hearing how things go for you, its so nice to be able to share news and ideas with all the lovely ladies on here,

Moijanx

[Carolyn52]

Sharon
I think we are all willing the cb oil to help you as you have been through so much chemo and your body must b fighting all the effects.
I did Google cb oil but read some hocus pocus stuff as well as good reviews.
Anyway , how is your daughter settling in to her new flat ? Bet bank of mum is still splashing out !!
Hugs xxc

[scratch]

Carolyn iv had about eighteen demusamab and they seem to work well...as for chemos the last lot only slightly reduced my liver Mets and now four months later theyv grown again😁...im doing this cbd oil because I'm desperate.i dont expect my advanced cancer to suddenly go away although that would be news wouldn't it.....anyway find put Tuesday what oncologist wants next but I'm not so believing in these cruel treatments at the moment....anyway take care .sharon.xx

[Corey45]

hi julie D thank you for your reply and positive commentsxx

[Corey45]

hi barton i dont seem to have the message privilage yet. i dont know how long this takes maybe its because im fairly new to this forumxx

[Barton]

Corey, I'm trying to send you a private message, but the option doesn't seem to be enabled for you. If you would like to PM, I think you have to request the option from the Mods. Please don't feel you have to if you would rather not receive private messages.

Hugs. Barton.x

[JulieD]

Daisyjane thank you for yor well wishes. I  hope your scan went smoothly and the results come quickly and you can move on with the best plan for you. As I  expected my scan had not been reported so I  landed up waiting over 2 hours to see the Onc,proper report still not available (will get it in post when done) but radiologist told Onc there were no changes since last one so take that as stable and am happy

Corey, you are in a hard place at the moment and I  don't think you've been helped by confused commnications b5 your team. Try not too worry too much (easier said than done!). I  think that when you get a primary dx they want to go straight in for the bigger guns to try to 'beat it', when you get a secondary dx they are more concerned about getting things under control and often don't do much about the  primary until you are more stable. It sounds like now they've had a proper chance to look at and discuss your case they have decided that as you've only one met in sacrum they can treat the primary first and then move onto the met, that to me seems quite positive as it seems to indicate they are not over concerned about mets spreading quickly. I'm afraid we do get treted and spoken to differently a lot of the time, the medics deal with primary head on with the hope of curing people, we can't be cured so their attitude changes and I'm not sure they really know how to engage with us. I wish you luck and hope your meeting will put your mind at rest a little.

Lizzy, thanks for that input and the link. I  tink a lot of us are interested in the cannabis issue but most of us would prefer the legal route. Helen, that's interesting, I  didn't realise it could be grown without THC.

Hope anyone facing scans, results or treatment has a good week xx

[Barton]

Hello Corey, sorry you are having a confusing and distressing time at the moment. It does get easier is all I can say. You need to get the upsetting bits over with first though - not easy, I know! Hang on in there. Please always feel free to rant and rave on here - there is always someone who understands exactly what you are going through, and provide all the support they can.

Hugs. Barton.x

[funnyface]

In some of our state's cannabis is legal and others not. They legalized it in my state but now they are working on putting it in action where to get it! They said it will take about 2 year to have it available. Ridiculous!!!! I know I couldn't smoke the illegal stuff, I wouldn't get it past my nose! Not sure if I would try the legal kind either. 

[Corey45]

hi avrelia thank you for reply,i am so glad its not just me that feels this way. just the thought of giong to see the oncologist makes me a nervus wreak. i have totally lost my appetite but hopefully i can get this back when things settle down . on friday i go and chat about starting chemo which terrifies me but at least im starting some treatment soon. just hope it knocks this bone met in the butt.time will tell

take care xx

[Lizzy_BCC]

Hi all, 

There are both illegal and legal derivatives of cannabis oil. Just a note to say we have to be careful and can not allow any references to the illegal substance but to find out more there is an interesting thread discussing the legal derivative here.

If you have any questions just email us at moderator@breastcancercare.org.uk. 🙂 

Best wishes, 

Lizzy 

[Carolyn52]

Good morning ladies
Well just been for my bone juice ( denosumab ) ..think its eight or nine now so I will have bones as strong as Stonehenge soon !!
Thinking about living life dangerous now and adding turmeric to my daily vitamins ....not brave enough yet for cannabis !! But will enjoy hearing your results Sharon.
Hope everyone is coping in this mad world but hey hoo ...we cope ladies don't we.
Hugs xxx

[avrelia]

Hi Corey, I know exactly how you feel. When I first went to the breast clinic and was told that I am 90% having a breast cancer, everyone was so positive, because all of them presumed it was a primary one. They said that is is curable, although, as you have heard, many cancers come back after a while...Anyway, as you guys say everyone is different. Whatever you read it might be not applicable for your as a case. Then I had all the scans and they revealed bone mets. All of the team started to talk to me, as if I was supposed to be dead shortly, that made me really desparate. Then i started asking questions about my prognozis, no one could give me an answer. They emphasized several times that the illness is no longer curable but treatable, and I will start first whith chemo and bone strenghteners, then if everything is ok I can have surgery next year...

These hospital visits definitely kick the good mood out of me, every time they take downd our weight, blood pressure, temperature....Speak to you as if you are doomed....

Be positive and live your life as if this is just a chronic disease, if you know what I mean, accept it and fight for good days, everything will be ok.

[HelenAquarius]

Yes I asked one of the oncologists team about cannabis oil and he said he'd not heard of it!!

A friend of a friend has started growing it - it's cannabis but with the THC (bit that makes you high)  taken out as he has a lot of bowel pain and its the only thing that helps. It's much cheaper to grow yourself but this isn't in oil form so you eat it in leaf form or smoke it. He gave me some.. Smells really bad in leaf form! The prob is you don't know if this is doing you any good or not with all the other stuff we are on. There has been research done in Oxford and lots of people in America swear by it. Hard to know until more complete studies done but there is definitely something in it I think. 

Helen 

[Moijan]

Hi Sharon, yes heard good things about  cannabis oil. Wanted to try it myself.. Trouble is...how can we get it?

I actually asked my onc a while back..he said'sorry I cant help'

hope you find it useful, do keep us posted

Moijanxx

[Angelmum72]

Hi Sharon
Keep us informed how you go on with the cannabis oil pls as I'm interested in trying this too x

[Carolyn52]

Hiya Sharon
Nice to hear from you as you have been quiet for a few days .
That's interesting about the cannabis oil ..let us know how it all goes with it.
Sometimes you have to try these things although to b honest I'm scared about trying new things !!!
I hope u get another good option with oncologist ..hope its a gentle chemo as you certainly went through it with the doxitaxel a few months back and it will b hard for your body to cope with more strong stuff .
Keep in touch
Hugs xx💔💔

[scratch]

Hi Carolyn ibrance common side effect is hair loss..so there's not many that dont cause that side effect...i didn't get any loss on capecitabine..xx dreading next Tuesday wondering what my oncologist wants to give me next or even worse what if there's nothing else for me..iv started on cannabis oil without the opioid..anything worth a try
Xx. Take care sharonx

[scratch]

Corey lots of people have chemo when diagnosed.i had masectomy then chemo to mop up any loose cells in 2004.followed by rads to chest area...unfortunately it came back rediagnosed in 2013.so been on chemos and hormones since..its hard for us when they say something and then change it ..i dont think they are very good at dealing with our emotions.but at least you now know your next plan.take care Sharon x

[Carolyn52]

Hiya Sarah
Sorry you are having such a hard time but at least you are getting the benefit of the best options.
Don't worry about the picc line ..nothing to it and it will save the hunt the vein every few weeks .
All the best .