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Bone mets - please join in

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Re: Bone mets - please join in

Hiya sue
So sorry u are feeling sicky with the cape ..goodness knows what I would be like on it ..I can just see something on tv and feel sick
I had a funny five minutes yesterday and cleared out kitchen drawers ..bet everyone has them ..you know full of old chargers we had for phones years ago, bits of string,watches with no batteries etc etc.
And ...the cutlery drawer ...why do we have more forks than knives and where do all the teaspoons go ? Sure I have a little elf that visits and pinches them ....ha ha
Hope everyone is happy ( ish)
Carolyn xx
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Hi carolyn
Not really to be honest it was a great feeling but ive suffered since. Cant win can we. No magic mushrooms im afraid. And havent been able to walk my doggie for a few days.
Feeling very sicky last two days with the cape
But i think its working already as the numbness in my jaw is receeding. The pressure must be off the nerve. Its been numb since xmas. Fingers crossed another two cycles to go, then back into the "shall we try"zone. How are you doing? You always seem so bubbly? Xxx
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Hi nicky thanks for the tip. I take 4 a day of the big chewable ones. I didnt mind but my teeth are hurting and im strugling. I will be onto my doctor on monday. Xxxx
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Hello everyone,

 

Hope you are enjoying the weekend and the warm weather. I managed to get out and potter in the garden this afternoon which was great.

 

I'm a bit late to the debate about cannabis oil but thought you might be interested to read this informative article on the Cancer Research website and make up your own minds - http://scienceblog.cancerresearchuk.org/2012/07/25/cannabis-cannabinoids-and-cancer-the-evidence-so-...

 

Take care,

 

Marion

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Hello B
Glad that you have had a good week in Dorset ...phew that's a bummer having your oncologist appointment postponed ..I feel for you as we live on a knife edge with treatments not working after a certain time ..I'm the same with letrozole after 15 months and have a scan end of March etc.
I think Barton is setting up.lunch next Friday so we can have a good catch up and put the world to rights !!
Carolyn xxxx
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Re: Bone mets - please join in

Hi Janette It'll be hard for a bit without your little girl but when you do see her again it will be great. I remember thinking how wonderful it was to have grown up children when they took their first steps out into the world. 

Maldives - glad to hear you are feeling well and coping with cape (mostly)

I've been on a nostalgic trip to Dorset where I used to live with husband, daughter and grandchildren, a great week. When i got home I found a letter from the hospital postponing my 6 monthly appointment with the onc from March 1 until April 19! I'd been psyching myself up, now feel at rock bottom. He had said exemestane would work for 12 - 18 months, well the 18 months is almost up.

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Hi everyone
Had a surprise visit from a MacMillan nurse this week. She was suggested by our denosumab jabber!
My wife has some incontinence problems and the nurse felt we should have an urgent ct scan. We explained that a scan had been ordered by our onc but she felt it should be speeded up and contacted our gp. In the end it was decided to wait for the scan as the problem wasn't new.
We were very impressed with the MacMillan nurse and glad she had made contact.
Good to have help like this.
Xx
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Jeanette
Always hard when the kids leave home and the first few weeks will seem eerie but just think less shopping and washing and you will soon adjust ....
Carolyn xxx
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FF, totally understand wanting a bit of time out, I did the same a few weeks ago....will miss you though, take care.
Well my little girl flew the nest yesterday! 😢 really going to miss having her around but also very proud of her!
Have a lovely weekend ladies.
Hugs Janette xxx
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Hiya FF
Yes going to miss you but we all need to step back sometimes so relax and de stress and have a nice latte / choc cake ...
Carolyn xxx

Ps. Nicky I love my tuitti fruity adcal tablets everyday ..am I weird or what ?? Ha ha .
Community Champion

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Hey FF. We will all miss you but take your time - or just come back to let off steam - we will all understand whatever you want to do.

Take care and don't get snowed in.

Nicky xx

Community Champion

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Hi

Have you tried the Ad-Cal caplets? You can get them on prescription rather than the chewable ones (which I hate but the way and why I get the caplets) They don't seem to have soya listed and don't need sweetners added as you don't chew them, you just take them with water, but do still have a few additives you may want to check out. You can find the list of ingredients if you check online for the caplets. I don't think they are regularly prescribed as they are more expensive than the usual chewable ones but you would be able to get them from your GP or oncologist.

Nicky x

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Hi All

Has anyone found a calcium and vitamin D tablet that doesn't contain soya or other nasties? There seems to be a lot of sweetners and E additives which I am not keen on though I have to take them as really need the calcium and vit D.

Pippin

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Hello Ladies, I want to wish you all well over the weekend and the next week! I'm taking a break for a bit! I'm OK just feel stressed! I will return! FF

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Hello sue
How nice to hear from you and you are putting me to shame with all that house cleaning !!
Sooooo..the cape is giving you some extra energy which is good but I'm thinking that whilst walking your dog you have found some magic mushrooms or something !!!! Ha ha ...long may it last ..the sun is out here today and they say its warmer than Spain !! so deckchairs out in garden again !!
Carolyn xxxx
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Hi ladies. Thanks for the warnings and advice. I have purchased some from the same site as my friend. Im sceptical about it but we will see. Sorry moderators will not put anything else on regarding this.
Apart from that im feeling great. The cape isnt having too many side effects and the zometa has not made me ill this time so im a happy girlie. I cleaned my house today properly for the first time in ages. I have been having help from other people and i cant believe how satisfying it is to clean your house lol. Lets hope the cape does its job and i can get through this cycle feeling as good as i do now. No ladies its not the oil i havent tried it yet. Lol. Sending you all a hug
Sue x
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Hi Sue, I also agree regarding the cannabis oil, tread very carefully with this. There are a lot of "dodgy sites" selling this and praying on vulnerable people!
I went to a secondary breast cancer awareness day at the christies hospital last year and the question of cannabis oil was brought up, the answer given was that still not enough evidence has shown to justify research into yet!
GPs can prescribed it but I'm sure that it's for MS patients only??
Hugs Janette xx
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Sue
Please be very careful with the cannabis oil ..there are a lot of scams and fraudsters out there at the moment ready to take advantage of vulnerable people.
There was a thread ages ago about this ..think its on " going through treatment" then on complimentary therapy ..maybe will help with info.
Carolyn xxxx
Community Champion

Re: Bone mets - please join in

Hi Maldives,

 

this one comes up every now and then on the forum, the moderators dont like it because

here its an'illegal substance' but for what its worth, there seems to be some anecdotal evidence that it helps with pain. I think gps can prescribe it...but dont seem to like prescribing it! 

 

Do be careful to check the source Maldives, some people have bought it online and found it wasnt what it should have been....or its contaminated xx

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BIG QUESTION LADIES

Has any one tried cannibis oil.??

I have just ordered some to try. My friend tried it and it reduced her cancer by 2/3.
Some people were stage 4 and are now cancer free. I will let you know my progres.
Xxxx
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Re: Bone mets - please join in

Hi carolyn and barton thanks for replies. Yes im still wAlking susie my doggie. Did an hour walk in the forest sunday. Well proud of my self.
PMOL i think you will find its the bone mets in the spine causing the pain. I had a few sessions in hospital with same thing. Once i went onto a slow release pain plan ive been fine. A year now. Ive not heard anyonr on letrezole with that side effect.
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Hello pmol
Well at least you have been scanned and so you can only blame the leyrozole ! Everyone gets different symptoms but maybe you should chat to your oncologist and switch to another hormone ..there are quite a few choices and being in pain is no quality of life .im thinking though if you have bone Mets you are not having any bone strengthener as zoladex is to switch the hormones off and letrozole is hormonal treatment too.
A lot of ladies here find denosumab helps bone pain .also if the back is causing spasms maybe some rads might help.
Carolyn xx
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Hi Carolyn52, on zoladex and letrozole. Had mri, ct and bone scan for the spine and ruled out compression or fractures.  I'm thinking that it's the letrazole as didn't have any pains before I started this... 😩

It just sucks... sorry... feeling sorry for myself today... 

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Happy valentines ladies! 😍😍💖🌹🌹 hope you have all been spoilt!
Hugs Janette xxx
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Hello pmol
Firstly ..they should have scanned your spine to eliminate any problems but I'm a letrozole lady too ..get good and bad days with it ..damp weather is a nightmare but I'm thinking u might be on denosumab jabs and I find I can get a couple of days of real back ache with it and sonetines a lot of extra aches and pains in joints as well.
Xxxx
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Hi girls - agree with Carolyn and hope everyone is getting some chocs ❤️❤️🌹🌹

 

on a more serious note, i'm on letrazole and last weekend ended up with an accute bwck spasm that meant 3 days in hospital until i could move on my own again.  Doc seems to think that it is due to some met on my spine but have also read that muscle pain could be a side effect of the letrozole.  Anyone else experienced the same? 

 

Xxxxxx

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Hello ladies
Happy Valentine's day ❤❤❤
Hope u r all enjoying chocs and flowers and have been all spoilt by your loved ones .
Carolyn xxx
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Hello Maldives, no, I'm afraid I haven't had the metallic taste, but that doesn't mean you are a weirdo! It just means you are having different se's to me! I do notice (and sorry for TMI), however, that my wee smells horrid! We are all different. Glad you are feeling more or less ok on it though - long may it continue.

 

Hugs. Barton.x

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Hello sue
Nice to see you posting as we haven't heard from you for a few days....I'm sure one of the cape ladies will be able to answer about the metallic taste ..
Hoping that you are able to walk your dog as they say the weather is getting better this week .....
Carolyn xxxx
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Hi girls. Well a week in on the cape. Not to bad. Metalic bitter taste back. Does anyone get it coming out of thier pores. Like lips and fingers or hands.? If i put the end of any finger on my tounge it gives off a real bitter taste.
Any one??????
Or am i just a weirdo?????
Also had my zometa last week. So far so good. Sending you all hugs ladies xxx
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Hi helen i had to fight for my bone scan. I put it to him that he couldnt treat what he couldnt see. He did give me the full skeletol scan although i wish i didnt know now lol. I can never be pleased. Push for it or ask your onc why? Hugs xx
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Ha ha ..moijan
Don't feel so guilty about the wet wipes now but did read somewhere that people bought baby crocodiles etc and then when they outgrew the family home ..put them down the drains !!
Xxxx
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Ff, Barton and Carolyn....apparently they found half a motor bike down there once...reckoned that the person must have had to put it down a manhole, !honestly..im not fibbing

 

ff, yes thank you am far too coldxx

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Well done, Carolyn. I have to say, I didn't realise they were M&S undies! What a waste!

 

Hugs. Barton.x

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Yes Barton ..I'm feeling very ashamed of myself for being stupid. I have now put a flip top bin beside the loo now !!
Saw that in the daily mail too ..who would want to put nice m and s knickers down the loo!!! They cost too much to waste !!
Well ..weather forecast is good now for this week so ladies u can put on all your Valentine frillies on without adding thermal ones !!! Ha ha ❤❤
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Hello Carolyn, I think they say that you aren't supposed to put anything other than toilet paper down the toilet (apart from the original reason for needing it, of course!). They had pics on the Daily Mail app on my tablet the other day - apparently some people dispose of clothing (! Yikes!) down the loo and cause the most horrendous build-ups!

 

So glad you found it in time - could have been really nasty - like ff's build-up! You have my sympathy, ff!

 

Hugs. Barton.x

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Moijan, Hope you get yiur warmer days! We are supposed to have 2 very windy days followed with some milder days! We have been very lucky this year, it has been above average temperatures most days. We had to wacky days where it was close to 70° and then dropped to around 20° and snowed. Really can't complain! I'm ready for Spring! I don't do well in extreme temperatures. Cold or hot! 

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Very cold around here just off to have lunch with a friend. Rumours of warner weather on the horizon........ so everything crossed
💥☀️🌅💙moijanx
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Hiya moijan
Been in house 18 months so think I must hold my hand up and say " guilty m'lord"
But I will think about it more from now on.
How is everyone feeling , we had a few flurries of snow yesterday ..nothing much and today its cold and cloudy ..
Carolyn xxxx
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Hi Carolyn, seem to recall youve not been that long in your house...could they be the previous occupants panty liners and wet wipes??   Not a helpful comment tho...sorryxx

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Carolyn, Close one!

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Well FF ..I will be thinking about it from now on ..lucky it didn't come back into the house but I had a smell in kitchen sink all week and kept cleaning !! Another week and it could have been worst .it was disgusting !!
Carolyn xxxx
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Carolyn, You are lucky it didn't back up into your house! We have a septic system and drainage field bc we live in the country side. You can not out any type of wipes, feminine products, or baby products down the toilet! We have had a clog twice now in the pipe that exits the house. First one was a major back up and ruined the whole family room. It was a big insurance claim and clean up. Walls cut, carpet ruined, etc.Second one was a mess but we were able to clean it up ourselves! Thankful we put down a ceramic tile floor! We had to rent a power auger to clean out the pipe. Luckily hubby is handy. Hubby doesn't know it, but I flush all the toilets now 4x in a row 3x a day. I'm hoping putting just clean water through helps keep the pipe cleaned out! I really want him to rent the auger twice a year and run it through for prevention. He thinks I'm crazy! FF

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Hello ladies
This isn't cancer related but a warning ..our drain outside has been smelly ...hubby and son lifted it ..jammed solid with wet wipes and panty liners ...never thought much about it before but it could be a costly bill for some of you ...
Drain rods purchased and saved the day .
Carolyn xxx
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Thanks for all the tips! FF

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We've had a dry fryer for about three years now, basically for the same reason as you Carolyn trying to keep hubby healthy. Found it really good. I use a tiny bit of coconut oil ( one with no taste) and it makes great healthy chips. If you use sweet potatoes keep the skin on or else they fall apart. 

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I used frozen chips and they were lovely but the instruction book says if they are homemade ones ..best results if u spray them with a tiny bit of oil first.
Xxxx
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We hardly ever fry anything but I  love chips and would love homemade chips, I'll be interested to hear if the chips tast as good as 'real' chips

 

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Hiya FF
Well actually I had a little test run earlier and did some chips ..very nice and tasty and crisp . It's called an air fryer ..it's by swan and cost £45.99 . Highly recommended and no fat or cooking oil needed. little steps to healthy living maybe !!
🍟🍟🍟xxx