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
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
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
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.
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
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.
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
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
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
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.
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
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
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,
hi julie D thank you for your reply and positive commentsxx
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
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.
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
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.
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.
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
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 email@example.com. 🙂
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.
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.
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