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Bone mets - please join in

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Re: Bone mets - please join in

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
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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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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
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Carolyn, I have  deep fryer, but I'm very interested in this dry fryer. I've never heard of it. Let me know how you like it. FF

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FF
We have a deep fat fryer for chips and sausages etc but its so unhealthy ....so I have bought a dry fryer ..looks the same but uses no cooking oil and dry frys every thing ..haven't used it yet but it looks very posh sat on my kitchen work top !!!
Probably another gadget that sits gathering dust but the old fryer has now gone to fryer heaven ( dustbin) . Looking out for hubbys arteries !! Probably too late after 68 years of living on unhealthy fried foods .
Xxxxx
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Oh FF that's a date! If we do decide to come your way would love to catch up with you. We've done the Grand Canyon when my husband was 40, we went to Vegas which was good, we stayed in the Balagio (the one with all the dancing fountains)
I really fancy New Orleans, think I've got some research to do!!!
Hugs Janette xxx
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Avrelia, I hope you can have your choice! Sometimes I think the worst part of this journey is the battles we have to fight over what we want! Then add in everyday battles paying bills, things  breaking, colds, flu etc. It is all exhausting!  This could lead you to be an alcoholic! 

 

Carolyn, Your post sounds like you have perked up a bit! What is this fryer that you are talking about? 

 

Snow amounts were not what they called for! There is a nice slab of ice with about 2 inches of wet heavy snow on top! I was bummed we didn't get the 10! I like one big snow, but only one! We are supposed to have winds of 35mph and gust up to 50mph starting soon. It's supposed to go down to 15°. A drop of 50° since yesterday. 

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Oh FF. .your making me rest less now for some travelling !! My son is coming to los Vegas in May to redo his wedding vows although he's only been married six years ..it's very romantic though!! (He got married in a castle here!! probably lv will be a lot more tacky !!)
Hope u r ready for the snow and we want a photo of a snowman !!
Carolyn xxx
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Janette, I'm not a city girl! I haven't been to NYC since I was in high school. It is only about 2 1/2 hrs to there. I have always wanted to go at Christmas time, but can't handle the walking now. I did go to San Francisco and loved it!  New Orleans and Nashville are fun too. The New England States are beautiful in Autumn, but November would be too late. I would suggest seeing Bryce Cannon, Yellow Stone, Yosemite, Grand Canyon. If you come  this year and are within a few hours of me, I would be willing to drive where you are and meet up. That is if you would like. FF

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Hello avrelia
Nice to c u posting again. I didn't reply to your threads as I think surgery or not is going to be a hard decision. It's difficult being dx with primary and secondary in one hit ...especially as you are still recovering from chemo and will feel quite tired from it all.
Anyway ..we are all holding your hand with support.
Xxxxx
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Glad you are feeling better, Carolyn.

 

Everyone stay safe and warm in the cold weather (be careful in the snow and ice, ff).

 

Avrelia - I can't help you with your decision, but just want to say that it is your decision - don't let people try to make you do something you don't want. You have all my sympathy.

 

Hugs to all. Barton.x

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Hello ladies
Yes ..the cold has moved onto some other poor victim now !!
Wow isn't weather strange ...we have had some nice sunny days here in Devon ..cold but fresh.
Jeanette ..I'm back to 2pm choc again. Bought the Brigitte Jones DVD yesterday so got to find the DVD player so I can watch it.
Actually , enjoyed some retail therapy yesterday ..both microwave and toaster went pop .so got nice new shiny ones now !! Also one of those dry fat fryers in the hope of getting hubby more healthy !!
Carolyn xxx

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Thank you Babsy, and yes, I know it has spread...That is why I want to make sure I am not helping IT get over, rather do my best to slow everything down. If a surgery is an option, I would opt for it. Is Carolyn "absent" because of the cold? If so, please recover soon dear, I myself was in a really bad condition from Christmas on, until the mid of January, but it was "only" a cold. I felt like s..t though!....

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Carolyn, hope your feeling a bit better lovely, missing my chocolate/letrozole buddy! 😆😆
Hugs Janette xxx
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Morning ladies.
FF, your weather is crazy isn't it! I remember one year going to New York in November, the first couple of days it was sooo cold then 2 days later we were in jeans and tee shirts! It's my 50th birthday in November and we are planning on going to new York again we love that city so much but we have been 4 times now so maybe we should try somewhere else!! There are so many parts of America i want to visit, we have friends who we met on our honeymoon 12 years ago who live in Michigan and would love to see them again, but also got San Francisco, Chicago and somewhere deep south I would like to see too!.....sorry ladies I've rambled on about stuff nothing to do with the C word!
Hugs Janette xxx
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Hi Avrelia, to be honest as you have secondaries the cancer has already spread. I like you have read that removing the primary does help ease the bodies load.  Many Of the ladies on here use an American website called Inspire to get links to research. Good luck with your decision xx 

 

 

 

 

 

 

 

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Strange weather here! Today it was in the low 60's. Running around without a coat. The temperature is dropping and by 1AM we are supposed to see snow starting. We are in the area for possibly 10+ inches. It is supposed to snow at 1 to 2 inches an hour and is going to be a heavy wet snow! We will  probably lose power on this one! Kerosene  heaters, generator and camping equipment ready!  Lots of food and wine! FF

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Thank you very much guys, that is how I am planning to decide, may be some intuition, combined with doctors opinion. I thrust my oncologist, do not know why, but she is a good person, hopefully a good doctor as well, hahaSmiley Happy I still remember the day, and I will probably always do, when she told me about my secondaries, because it was explicable that I asked her the question-HOW long do I have, then she told me that it is tooo early to tell-some women live 5, others,10 years,others even 20 years, so she cannot tell me for sure. The only thing she could tell me that I am never going to be an OLD lady, whatever this may meanSmiley Happy....Creepey, isn't it? 

Still, I am scared, I am scared if I choose to have the surgery, of course if I have the option to choose, will this be better or not. Have read somewhere that by reducing the tumors inside your body you are making it less toxic or something. But if this makes it worse like, letting these cells invade some other parts of my body somehow....

On the other hand, an intervention is an intervention after all, andeverything is risky....But why is the surgery then A MUST for primaries. That should mean something, they are eliminating the breast tumor, and basically the difference between secondaries and primaries is that the former have some more....Any way sorry for my chaotic and moaning post, but my mood has been like that since my chemo is over. I have to organize myself and just enjoy life, let it happen...

Thanks you all of you for the time spent reading me and replyiing

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Avrelia, I'm not in the same boat with you.I didn't have a double whammy dx like you. I have heard some women keep the breast and feel they can monitor their treatment results by watching or feeling the breast tumor, others want it gone. I think research gives you both sides if the coin too. Seeking other ladies opinions and looking at research is a good idea, so you can form your own opinion. Whatever you decide you are comfortable with is what you need to do. Going into the oncologist office with your decision would probably be best! Good luck with YOUR choice!  FF

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Hi Avrelia,

 

My history is different, I had primary back in 1999 and secondaries in 2010 so I  can't talk from personal experience. However over the years there have been many women in a similar situation to you.

 

It seems that generally the medics don't like/want to operate on secondary women at least until they have shown a period of stability. Even then thee are different attitudes. However, if you feel you want it done and would feel emotionally and mentally better to have the cancer surgically removed then I  think you should continue to press for it. You can get second opinions, you can change teams, you can even change hospitals.

 

Over recent years there does seem to have been a slight change in opinion with some now thinking that operating to remove the original cancer may increase length of survival by lessening the cacer load in the body, though therr is no actual proof of that.

 

As I  said, I  think it's down to the individual and how they/you feel. Some don't want anymore invasive treatments than necessary and don't want surgery others want shot of the sight/reminder of the disease. I wish you luck whatever you decide.