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 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
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
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
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
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
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
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
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.....
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.
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
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!!