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Bone mets - please join in

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Re: Bone mets - please join in

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 

Community Champion

Re: Bone mets - please join in

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

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Re: Bone mets - please join in

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

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Re: Bone mets - please join in

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
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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😊
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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
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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

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Re: Bone mets - please join in

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 ❤❤
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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 

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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 ? 💖💖
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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
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Re: Bone mets - please join in

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

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Re: Bone mets - please join in

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
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Re: Bone mets - please join in

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

 

 

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Re: Bone mets - please join in

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
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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
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hi julie D thank you for your reply and positive commentsxx

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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

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Re: Bone mets - please join in

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

 

 

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Re: Bone mets - please join in

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 Smiley Very Happy so take that as stable and am happy Woman Wink

 

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

 

 

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Re: Bone mets - please join in

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

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Re: Bone mets - please join in

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. 

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Re: Bone mets - please join in

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

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Re: Bone mets - please join in

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. Smiley Happy 

 

Best wishes, 

 

Lizzy 

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Re: Bone mets - please join in

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
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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.

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Re: Bone mets - please join in

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 

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Re: Bone mets - please join in

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

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Re: Bone mets - please join in

Hi Sharon
Keep us informed how you go on with the cannabis oil pls as I'm interested in trying this too x
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Re: Bone mets - please join in

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💔💔
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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
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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
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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 .
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hi marie123 thankyou for replying i just feel so up and down. when i was told i had a bone met oncologist seemed optomistic but the nurse talked like id been wrote off. its feels different to when i first got breast cancer diagnosis everyone was so positive. hopefully friday i will get a plan sorted and feel a bit more confident .i have to say im not looking forward to the picc line being put in. i shall be a nervous wreak

sarahxx

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Re: Bone mets - please join in

Hi Corey, totally get what you are saying. At the beginning of this I felt like  I was a scientific experiment. Chemo yes , no maybe , no  second op yes then cancelled the day before.

Ask lots of questions and make sure you are happy  with your team.

I think the oncs are trying to do  their  best for is, but it is not an exact science everyone is different , cancers are different and the way patients respond to treatment is different. (Although  a little understanding from medical teams wouldn't go a miss )

 This is hard for you when you are so vulnerable, BUT it does get better. Your treatment plan will be put in place and then you will know where you are.

Be gentle with yourself and take care.

Hugs Marie xx 

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hi all, feeling scared and confused.after being diagnosed in july with one single bone met to my sacrum. (shortly after primary diagnosis) i was put on tamoxifen.told because the rest of my body was clear at the moment they would concentrate on the sacrum with targeted radiotherapy maybe at the royal marsden.now today i get a call from oncologist to say they have decided to treat me with chemo first instead then rads to breast then maybe rads to sacrum.i feel like they cant make up their minds and this has completely thrown me again. go to see oncologist on friday at rde and already panicking about what he is going to say. is this the norm for a single bone met? so sorry to moan on but my mind has gone into overdrive. xxx

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Bone scan tomorrow, seem to have a bit more discomfort in my pelvis but may be all in the mind. MRI head scan was good. Thank you everyone for all the hair information

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I have found with the hair thinning to keep hair shorter as it looks thicker! I tend to ruffle it rather than brush it !!
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Ha ha Carolyn, yes at least the dogs shed more than I do......and hubby is finally thinning too so the Dyson is groaning! Sorry you have thinning as well FF. Have you had any gastro problems on Ibrance? I'm having the galloping trots and stomach cramps but it may be the Taselisib. Lost my appetite too.....which could be a positive!! Thinking of everyone xx

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Hiya ff and still here
Sorry u are getting the hair thinning though as its bad enough on chemo but its very depressing ..it's probably the letrozole side doing it as I get loads of loose hair too.
I stopped my highlights ..so an old grey bag now !!
My hubs takes steroids for his chest infections and he says they cause it too ...so between us and the dog hair ..we burn out a lot of vacuum cleaners !!

Hugs xx
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Stillhere, My hair is thin and breaking from ibrance and letrozole. My eye lashes and eye brows have been thinned out since I started mets. FF

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Hey Carolyn, I seem to be getting hair and eyelash thinning with Ibrance! Think it's a recognised side effect, my Onc just says it shows it's working!! Anyone got any tips? Never had lots anyway after so many treatments, will stop having highlights now though.....

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Evening ladies,

 

For those of you checking out wigs, it might be worth visiting http://www.mynewhair.org/

 

It was set up by Trevor Sorbie and lists salons who will cut and style a wig to suit you. There's also a downloadable booklet with advice on choosing and caring for a wig.

 

Love Marion

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Well ff. .I think you made the best decision to get real hair !! This all happened in 2004 when I had chemo but I expect I spent more on three acrylic wigs than a real one !!!
Fingers crossed I don't have to go through all that again !!
Just hope ibrance gets licensed here soon as you don't loose hair with that.
Xxxx
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Carolyn, I'm laughing at your wig dilemmas. When I was first dx with breast cancer a friend brought a wig maker to my house. He came measured mg head and told me about real hair wigs and acrylic wigs. He told  me about melting them. This was mid October and we celebrate Thanksgiving in November. Every year without fail I open the oven to check on the turkey and I burn myself with the steam. He said the realm hair wig was $1,000 and the acrylic was $300. I figured I would melt one at Thanksgiving and probably another one later. I figured I should just get the real hair one. I still have it! FF

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Good morning ladies everywhere
Just sat here thinking a year ago ..my life was about shopping, holidays and diy. .now you know I look forward to the Sunday papers with those little booklets which sell gadgets ...comfy cushions; grabby things to pick up without bending and heat pads etc !!
Best of luck everyone with their scan results etc.
Hugs xxx
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Julie d
Good luck with your scan results. Sending positive vibes to you. Debbie (daisyjane) xx
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Hiya Helen
Yep ..New furniture all done. What a shame about your lamp.
I must confess I have never been to Ikea ..our nearest is Bristol and as we don't have a van . Seems pointless as we couldn't trundle big stuff back in our car.
Hugs xx
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Hi Julie.. Thanks for the zometa/denusumab info. It makes sense my bring on Zometa it as I am so short of breath so that se would be a disaster for me!

 

carolyn.. Happy your furniture up! I went to the new Reading IKEA today.. Was great but chose 2 coffee tables and a huge mirror for the bathroom but when I got to the warehouse storage bit, all 3 items were out of stock.. So disappointed! I had managed to pick up a trendy modern standard lamp, paid for it and then left it on the checkout! Aghhhhh! So annoyed. Rang and they said it hadn't been handed in.  I'm gonna go in omorrow and demand to see cctv!! 

H