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Bone mets - please join in

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Re: Bone mets - please join in

hi carolyn ,

just a quick reply ,betty my friend and i were given a car parking ticket in a public car park about 4 years ago ,we mailed them ,wrote to them ,tried ringing but to no avail,and never heard a thing since so never paid anthing ,i just do not remember the name of the company  ,but wish you luck and they can not touch you with ticket proof and blue badge .

take care reneexxxxxxxxx

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Hiya Maria
Your poor love ...my oncologist retired last year too and I always felt in safe hands with her .
I don't get tumour markers done but 6 weeks isn't that long for the exmestance to get chance to start doing it's magic ...fingers crossed that your scan results will show as stable when u get it.
Try not to panic too much ( says old worrier knickers here!)
Hugs xxx
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Well ...I'm fuming ..got a parking notice for illegal parking in a public car park ..but I have my parking ticket here as proof ( always keep them ladies) and am a blue card holder ..
I have e mailed the company twice with copies of my ticket but no reply ...there's no phone number to contact either ...the firm is Smart Parking ...just wandering if this is a scam ?
Xx
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Hi X Well I arrived for my onc appt yesterday to be told that he has retired and that I had a new oncologist.  That destabilised me to start with.  I was then told that my tumour markers had risen from 45 to 53 (I have never been told my markers before).  I have to have a scan in 3 months. Also my liver function was slightly raised.  I have been on Exemestane for 6 weeks after tamoxifen stopped working.  Does this mean that Exemestane isn't working either ?  Just a bit worried.  Xx

 

 

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Hello Ramade
Thanks for that info about the new bone growth ..must be honest never thought too much about it before ...obviously our bone juice is doing the job .
I don't think anyone has ever mentioned this on the threads before ..so thanks ..
Hope u feeling betier after the rads ...xxx
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Hi all, just thought it would be useful on this thread to say that when I had my whole spine radiated the other week they took xome pictures through the radiotheray machine because they weren't sure whether the latest chemo was working or not and I was told later that it actually showed the new bone growing over the damaged bone and sealing up. Amazing as I have loads of cancer in the spine and significant osteoporosis. Apparently it takes 18 months for new boneto totally replace old. Now that has to be good news for us "bonies"!!!!

Love to all and have a good weekend, just bought myself 2 nice presents on amazon to celebate.

ramade xx

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Kate, When you click on my name another page will appear then you will see somewhere on the righ "send private message" I have just send you one

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Haha Carolyn, it does not matter honey comb, cheese, as long as the denosumab is working. How is your oncologist describing them now, as hard as rocks or he will again choose some kind of foodSmiley Happy 

I have been always wondering as well, they say denosumab is a bit different from the other strenghteners, may be it is smarterSmiley Happy

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Hello Kate and avrelia

Snap ..my oncologist described my bones as like honeycomb when dx two years ago ....not sure which description is better ...cheese with holes or honeycomb but at least denosumab is doing some repair work ...still confused as it's injected in tum but how does it know where to go ? Does it have sat navigation to holey bones ?
Hugs xxx
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Hi again, let’s hope we’re both right! It certainly struck a chord!! I would pm you, as I’m not sure what you can post on here, but I don’t know how to x

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Yes, I thiink it is good news. She said that the holes are filled in, which might be a similar case as yours. However she only realized that after an MRI, not standard CT or Bone scan. I do not know how all of these differ with respect to bones, as last time sha was not happy with the bone scan but she is happy with the MRI....Kate, do you do a Wednesday as well? Is it a coincidence or we might be somewhere close

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Yes, I thiink it is good news. She said that the holes are filled in, which might be a similar case as yours. However she only realized that after an MRI, not standard CT or Bone scan. I do not know how all of these differ with respect to bones, as last time sha was not happy with the bone scan but she is happy with the MRI....Kate, do you do a Wednesday as well? Is it a coincidence or we might be somewhere close

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Hi Avrelia, I really don’t know the answer but it sounds to me like hard must be a good sign?? I remember my first scan after starting treatment and Onc was pleased because the affected bone area no longer looked like cheese with holes in but now looked filled in!! Can’t offer anything about liver profile I’m afraid. Lady Oncologist and Wednesday clinic, that’s very familiar too! Hope it does prove to be good news for you xx

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Hi all,

Just came back from my oncologist appointemt, which this time left me speechless, as she told me that judging by the MRI my bone mets have become harder and she does not want me to have any radiotherapy at the moment unless I have pain, which I do not. Although I do not understand exactly what she means that they are becoming hard, I agreed as I do not want the rads. She thinks that the Denosumab is doing its job. However my Liver profile showed a bit up, so she was thinking it might be due to Letrozol. Anyone else on the same page?

It would be such a relief for me to have a piece of good news after all the issues I had.

Hugs to all

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Thanks Nicky! Oct. is a busy month for you! Then in a blink Christmas is here! It sounds like our pancakes are better, but I'm sure it's a personal choice. I'm sure you have plenty of things that taste better than ours. FF

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Belated Happy Birthday FF and good to see you are getting a bit better niughts sleep - and in your own bed.  Your birthday breakfast and evening meal sounded great - I love American pancakes (our British ones are flat - as a pancake!! ha ha and not as soft and melt in the mouth as yours are) Also hubby sounds a dab hand at the evening meal - what a treat.  Plus money to spend, how good was that?!  We are also in buirthday mode with OH's birthday yesterday then my Dad's tomorrow and brother's the day after.  We're very poor after October finishes!

Hi to everyone else, have had a quick read as it's been a bit of a busy time for me with little internet access so hope you are all doing weel on various treatments.  Welcome to all newbies it's the right place to come to for support and experiences that we can share and help you with.

Nicky x

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Wendy, I'm sorry you are having pain too. Between pain and extra spots I'm sure you are exhausted and overwhelmed. I know I have been. Plus these doctors are never on schedule which drags out the appointment time. Hugs!

 

Thanks everyone for understanding how awesome it was to get back in my bed. I can't wait til I can get in and out without pain! One step at a time. FF

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Renee, Little one is a girl, but I would have been happy with either. I like your gaming weight diet! Enjoy all the extras!  FF

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hi ff,

so pleased to hear you are slowly recovering ,stick with it girl and you will get there in the end.

i just had to go and make myself some of your pancakes but had clotted cream on mine ,i had the fruit in as i have started to make myself fresh fruit smoothies and, juices.

my doc advised i use fresh fruit ,ice cream and double cream ,to make them as i need to try and put on weight,so have taken her advice, as normally i dont eat fresh fruit and would not have had it in my home .

i can imagine how you aree feeling about a new grandchilld ,,time will soon pass and you will be able to enjoy boy or girl,do you have a preference or not as long as fit and healthy.

take care and best wishes .

reneexxxxxx

 

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Hi All

Firstly welcome to all the newbies and congratulations to all the nannies in waiting. How exciting . I have been through another round of radio treatment to spine and then bone scan which was good news as nothing else detected and tablets changed to letrozole. Had second zoladex injection today. However, have pain across top of back but bone scan only 2 weeks ago so hoping it is just referred pain or tension as back at work rather than tablets not working. I too feel I am constantly at one appt or another and still need to go back to finish reconstruction and tempted to have lopsided boob forever. Anyway chin up love to all and it's now home time. Wendy

P.S jelly tot how are you I have not seen you posting lately? Hope all ok x
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Hi FF

So glad you managed to get back in your bed last night. There's nothing like it and your feet and ankles do suffer if you can't put them up. Hope you've beaten the pain. Like the sound of your omelettes

 

The trouble with eating routines is that you tend to fit in with other people to a certain extent. I wake up so early that I begin to want breakfast early too.

 

Flu jab for me next week, same day as onc appointment Smiley Sad

Hugs to all Bon xx

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I hate January and February too but yours will be so busy and exciting with the little one ..and then before u know it ..spring and summer
Xxx
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Carolyn, I cannot t wait to meet her! First time ever I'm looking forward to January.

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Hello ff

So glad you are getting back into normality in your own bed again ...I'm been getting a stiff neck the last few days and so I'm off to buy new pillows as I think mine have reached their sell by date !!
You will soon be pram pushing and need to be fit for that ...I've got the baby shower on Sunday. .only about 6 weeks now before the twins will be hatched !! Once Xmas is over you will get the best gift of your new grandbaby too ....
Hugs xxx
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Hello Maria

No the ct scan doesn't cover the boobs ..I asked that too ..it's got to be the mammogram for them which is more specialised. I also find that ct scan only covers neck to hips ...no legs,arms or head which to me is only half a job !! Bone scans do the whole body and mri is a lot more detailed ..
Welcome to the world of scans,anxiety and appointments !!
Hugs xxx
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Thank you Carolyn for your reply to my worry.  I just don't think I can cope with having to wait for another scan and results just at the minute after all these appointments.  I was quite surprised to have a mammogram as I thought that anything growing back in my breasts would show up on a CT Scan ! 

 

xx 

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I slept in my bed last night! My feet went down some last night. Carolyn, I started getting my flu shot in August. My hubby and our friend Terry every year in late Sept or early August get these nasty colds with terrible hacking coughs. They manage to have this for weeks and both are too stubborn to go to the Dr. Then I would catch it. I often wondered if these two actually had the flu. I decided to get my flu shot in August and even though these two continue to get sick I've never had it again. This year I convinced Ross to get his shot early. Well, Terry has the cold and hacking again and Ross hasn't got it! I'm positive it's the flu and not just a cold. I usually have about 12 hours between dinner and breakfast. I had that sweet breakfast on Sat morning, then ate some of it Sunday and Monday. Some went on the trash. That was a major treat for me! Breakfast is usually a half cup of cottage cheese and whatever fruit we have. If we don't have any fruit then I eat a cup of cottage cheese. I also do veggie omelets. I love an omelet with tomato, asparagus and mushrooms and a wee bit of cheddar cheese. FF

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Hi Carolyn, I do think there's something in the overnight fasting but with food in general it does seem to be that what's healthy one week is out of favour the next! I'm a bit odd in that I like reading research type stuff, probably because I had to a lot in my work, but think you do have to take some of it with a pinch of salt and moderation is probably the key, along with a bit of what you fancy does you good! 😉

Hope you escape all the viruses that are bound to come around, did hear on tv that Australia had a bad time of it this year, do we could get the same! Something else to look forward to! xx 

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Hello Kate

I must be the most unhealthy person here ...I eat too much choc and junk food etc etc but I must say I have been doing this little routine for a year and don't get kept awake by indigestion or heartburn !

Well just had my flu jab ..so hopefully it will do it's job again ...useless info from my nurse but the jab takes 2 weeks to start working so anything like a cold, runs or sickness in that time is not related .
Xxx
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Good morning Carolyn! I don't think it was a quack article! I've looked a lot into diet (haven't said much on here as reading through the site I get the impression that dietary info isn't always welcomed), I've read lots about this, cancer cells like sugar, and yes eventually all food is converted to glucose, but it's not as simple as that. Having an early evening meal and not so early breakfast is widely believed to be beneficial. I read these things and take the attitude if it's not going to hurt me, they are well worth a try! To me it did make sense, after all break...fast is how the word came about I believe! xx

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Hello ff
Happy birthday for yesterday ..glad u had a good time and wow that breakfast sounds gorgeous but huge ..I prefer going out for breakfast or brunch as we call it ...don't eat much at the end of day these days ..indigestion usually kicks in !
I know this sounds silly but I read somewhere that starving 12 hours a day stops the cancer feeding so much ...so I never eat after 6 pm and then don't eat breakfast to 9 am at least the next day ..it was probably a quack article online!!
Well ff ..u need to get that back sorted so u can get to the shops and spend your birthday money on some nice new slim woman clothes after all your weight loss.
Sorry about the pudding feet and ankles ..maybe just side effects of some of the pills u have taken.

Hugs xxx🌹
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Hi ladies! I'm very frustrated but hanging in there. I'm not having the unbearable spasms, but still have a good bit of pain when I try to get up from laying down. I'm able to lie down without the spasms. I still haven't slept in my bed. It's easier to get up off the couch. There is more places to grab and pull. I've been to the chiropractor 8x now. I have to go Wed and Fri yet. He hopes I'm fixed then. It really hurts when he works on me.I've been to the chiropractor  before over the years and it never hurt. Today I was on my back and he ran his hand up my thigh and it immediately shot pains to the area in my back. I want fixed but I sure would like to know what caused this! My feet, ankles and legs are swollen. I hope it's bc of the way I've been sitting and sleeping. Tonight and tomorrow night I'm hoping to try my bed, if the swelling doesn't start going down then I might need my kidney function checked. I'm determined to see my granddaughter,but starting to worry about me. I'm off the muscle relaxer, wow did they make me feel goofy. I only take oxycodone before I go to bed. When I was taking the muscle relaxed I couldn't stay awake. Every time I turned around I was nodding out and dropping my cell phone or kindle. I did have a nice weekend. Hubby, my kids and their OH's took me out for breakfast Saturday for my birthday. I like to go out for breakfast more than I do dinner. We went to a place that goes all out on their choices. My breakfast was called "Some Gave All" It was 3 dinner plate size blueberry pancakes, with creme brulee between them. Topped with fresh strawberries and bananas, then drizzled with white chocolate and a berry syrup topped with whip cream.I definitely brought most of it home. Then hubby made my favorite chicken dinner. It is chicken marinated in honey and mustard. Then baked topped with mushrooms, bacon and  two cheeses. Also had asparagus and baked potatoes. Finished off with ice cream cake. Crazy family lit 63 candles on it. They all gave me money to do some clothes shopping. Sorry, I was so chatty! It's the first I've felt like talking in days! FF

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Hello Maria
Two months isn't long for your exmestance to start working ..I think it needs at least 6 weeks to kick in and start blasting the little blighters ...
It sounds like you are being well looked after with all appointments but sometimes u just want to forget hospital and get back to normal !!
Hugs xx
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Hi Ladies,

 

Hope none of you are being blown away by the hurriance!

 

I just wondered if I could ask a question, its just something that is going around in my head.  I have an onc appt on Wednesday which is my first appointment since changing treatments nearly 2 months ago.  I was changed from Tamoxifen to Exemestane.   What I am wondering is will they give longer than 2 months to give it a chance to work before I am scanned again ?  I have monthly Zometa injections and have had a mammogram, bone scan appointment and an appointment with the breast surgeon this month and I just feel like a break from the mental torture before it starts all over again !!  (sorry to moan)

 

Nicky huge congratulations on both the new grandchild and your scan results,  just brilliant.

 

Funnyface I hope your back is getting better.

 

Carolyn I think I read you were sufferring with some aches and pain, I do hope they have gotten better.

 

Mojan, how are you ?   and kind thoughts to all the other ladies out there bravely soldiering on.

 

Maria x

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Hi Nanofthree, I agree, you should definitely check! Hope you enjoyed your time away. Please do let me know how you get on. Kxx

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Hi Kate. Sorry, I have also been away tho weekend in the new forest. Wanted to forget about cancer! But home now and thank you for the info. I am not sure about what you can and cant post either. I see you are on letrozole, but even though I am on chemo I am still going to ask onc. You never know! Will let you know. Hugs x
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Morning Benten

Regarding scans hospitals seem to vary quite a bit in my opinion. Is a a bone scan or a CT scan you are asking about?

I can only speak regarding myself I was diagnosed with bone mets same time as primary over 8 years ago. Finished chemo and Rads in April 2010 put on Letrozole which worked for 4 years I did have any scans at all until January 2014 when I complained about more bone pain. Had a bone scan CT scan then treatment was changed. From then I seemed to get scanned every 6 months for 2 years then last year it seemed to change every 4 to 5 months.

Now this year had CT scan in March then another one in August hope that helps you understand more about scans.

Linda
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Thank you ladies for your replies about the scans. I suppose it is getting used to the difference between the intensive months of treatment when you have your primary and how I am being treated now.. You feel as if you are never away from the hospital or doctor and your whole life seems to revolve round your treatment with your primary. This time I pop a pill every day and get an infusion every three months,  Life on the surface is back to normal. Don't get me wrong I want it that way and hope it stays that way for a long time. However my mind is on it all the time. When I am at work I can forget about it for a while but when I get home it all comes crashing back in. Anyway enough moaning, off to Tescos. Everybody still wants fed.xx

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Hi Nanofthree, just read a post over on Complementary Therapies in the thread about diet and cancer where someone is asking about probiotics, says their hospital info says not to take probiotics if on chemo so you should definitely check first if you decide to try the Florassist. Kxx

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Hi Benten

I think it varies depending on what's wrong with you, how quickly it's progressing, what your treatment is, what kind of scan you are having, in fact everyone is different and of course so are oncologists in their approach. Hope your treatment is working and your next scan result is good.

Bon xx

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Hello Benten.
Just to answer your question regarding scans ...I get mine every 8 months .. I see oncologist every 4 months. ..I think every hospital varies with these things though.
Xx
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Nanofthree, just thought on and looked it up on the website...why didn't I think of that before!! 

It's called Florassist Oral Hygiene by LifeExtensions. Can I name the website on here? I'm new to this forum so not sure what I can and cannot post! Only the pharmacist I mentioned writes articles for the site and has written one about this. Please let me know if you need any more info xx

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Hi Nanofthree, yes of course, I'll be back at home tomorrow. As regards my Oncologist, I haven't asked specifically about it but have spoken about supplements and didn't have a problem with me taking them. I did speak with the pharmacist at the company I buy them from, told him I'm taking Letrozole and he said it would be fine and to be fair I think he would say. I buy a few things from them and something I asked about with a view to taking he said not to, so I don't think he just recommends things. Also, thinking about it I think they are the cheaper probiotic I take, I also take one to prevent colds/flu as I don't have the flu jab. Will be in touch tomorrow xx

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Hi. I hoping someone can give me some answers about the length of time between scans. I had my first scan at the beginning of June when I was diagnosed. I saw my onc a few weeks ago and he said he would see me late November and he would see about arranging a scan. It is going to be at least six months since my first one. Is this normal timescale?

Benten x

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Hi Kate. That sounds very interesting. Do you need your oncologists approval to take this? Would you be able to let me have the details please? Thank you. Xx
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Hi Nanofthree, afraid I cannot offer any advice about the chemo but I've had some dental issues and had to have two courses of antibiotics. I really wanted to avoid taking any more and looked into probiotics, I take a course of one especially for oral hygiene every other month. You take for 30 days but remains effective for 60 days. It's not cheap but I can say that for me it's really helping as I haven't had an infection since. Not at home at present but can post the details if you're interested. Kxx 

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Hi Maria Louise. Thank you so much for your encouraging words. I will try not to worry! You just imagine the little blighters multiplying like crazy dont you. But you obviously didn't suffer as a result so hopefully I will be the same. Hugs xx
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Hi nanofthree

 

I completely understand your worry.  When I had FEC last year I had to take a break between my treatments of 3 weeks whilst my blood counts settled down.  Nothing had happened in the way of progression on my scan taken after this break so have hope and try to not get too anxious.  Big hugs xxx

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Hi Nicky,

Thanks for that info ,i shall look into it and i see bcn plus oncologist next friday and will mention it to them ,although i did three weeks ago and onco said yes 2 hours each time to make sure i have no reaction,plus i did ask nurse and my own gp ,but all gave the same answer ,the only one that differs is a bcn from city hospital and she said the time had been cut to i hour,so will let you know how i go on as i can not see the point as have had 11 infusions of herceptin and perjeta ,but perjeta taken off me because can not take it with chemo tablets ,so had one injection in hospital and one at home but viewed for two hours ,quite frankly its a pain in the bum.

Thanks again.

Reneex

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Hi Carolyn. Thank you and sorry I am here again! I am sure someone will reply to my cry for help! Xx