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Bone mets - please join in

julzd
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Re: Bone mets - please join in

Hi ladies I'm going to give yoga a try after my chemo finished might try pilates too. I have been having reiki I enjoy that but it's expensive not sure if it works but it is relaxing. I try to eat better but I crave sugar and give in everytime but I struggle with the chemo so as long as I'm eating something but I am going to try and eat better just to build myself back up I think the chemo has wiped all the goodness out my body. Take care everyone julie x x
Chocolates
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Re: Bone mets - please join in

Janette, I'm so pleased.  These blips - make us worry and worry don't they.

 

interesting discussion re diet and lifestyle.  I agree that everything in moderation.  I accept my life is shorter and therefore my quality of life is very important.  I want to enjoy my time left however I would like to think that I would support anyone whatever they wants to do and however they wanted to live their life.   Think we are all unique and even those of us who have the same cancer status react differently to meds etc.  Whether that is up to diet, lifestyle or genetics who knows.  I'm sure I'm not the only one who knows complete opposites health wise with cancer.  Therefore as others have said I'm sure there is also the element of just bad luck.  What I am hoping is that I can hang on long enough for immunotherapy to come on board - as this looks like a real game changer in terms of helping us and also might really make me believe that I have a chronic condition rather than a terminal one.  Fingers crossed xx

 

carolyn - I'm now going to the cafe for a hot chocolate.  Might see you there xx

rosie53
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Re: Bone mets - please join in

Hi Chocolates, nice to hear from you, glad your ok love, had my bloods repeated yesterday and my bcn rang this morning to say it's fine now.....must have been a blip!

Hugs Janette xxxx 

rosie53
Member

Re: Bone mets - please join in

Hi alockyer, as Scratch has just said, I also have always lead a fairly healthy lifestyle, don't really do junk food, have always run/walked, never smoked, always have cooled boiled water with fresh lemon in the morning. 

EVERYTHING IN MODERATION is my moto! Most cancer's are down to pure bad luck and faulty overgrowing cells, as explained to me by my onc, I have also questioned alcohol etc with her and was its in moderation. 

scratch
Member

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Alovkyer.i dont smoke went to the gym four times a week walked everywhere .cut down red meat but the cancer still advancesn i have tried my best. And still do.cancer has been found in Egyptian mummies so its not a new thing..diet is up to the individual ..
Carolyn52
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Re: Bone mets - please join in

Hiya chocolates nice to hear from you but you haven't been to the cyber cafe much lately and I wondered if you are ok.
Hugs xx
Carolyn52
Member

Re: Bone mets - please join in

Hiya alockyer
Yes I agree that lifestyle and diet plays a big part in dealing with c.
I haven't drunk alcohol in twelve years or eaten meat. I avoid microwaves too. I had an aunty with bc and she always blamed it for her bc. Not cooking in it but because it was level with her boobs when she was in the kitchen!
Carolyn52
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Re: Bone mets - please join in

Red riding hood.
Thank you so much for that lovely reply and Jeanette and I will b feeling better for your information.
Like everyone its the fear factor of the next stage but we are stronger than we think and so battle must commence if necessary!
I also feel a bit of a fraud just taking letrozole when so many of the ladies here are going through much more savage treatments.
Thank goodness for these threads.
Hugs and thank you.
alockyer
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Re: Bone mets - please join in

I'm surprised that so many people don't think about their diet and carry on as before their diagnosis. It's well documented that 'lifestyle' and external factors play a key role in preventing cancer, including diet, lack of exercise, smoking, drinking, exposure to chemicals etc.I don't know if it will definitely help, but I'll do whatever it takes to kick it's butt. I'll do the broccoli smoothies, the bicarb, cut out meat and diary, and then at least I'll know, and my partner will know that I've done everything I could. I wouldn't forgive myself if I didn't try, and at least I've taken some control back, and not relied on others.

Chocolates
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Re: Bone mets - please join in

Hi ladies, have been absent for a few days but I see you've all been keeping each other company.  

 

I do do see my scan reports - I get a copy.  The first time was awful - to see it all in black and white - 25 spots in lungs and then bones as well but it has got easier and at least I now know what to expect.  I thought I would be OK getting the report but it did knock me back initially but hey ho - it's been good to see the uggers disappear.  However each to their own and I feel if you trust your onc then that's fine - I do trust mine but I still wanted to see.  My onc is also coming up to retirement age so at least I know exactly what I have before being passed over.  It's unsettled me a bit but he's not gone yet so hopefully he'll continue for a while yet.

 

janette, sorry to hear wbc low, hopefully bloods are now picking up.  It's bizarre isn't it - when I was diagnosed with sbc I felt really well.  Yes I had a slight ache but nothing more.  The horrors were really hard to understand after functioning normally.  I know others though do feel terrible - never quite worked out why we all feel so different - I suppose it's also to do with how we react to our treatments but what a mystery it all is.  Science is incredible to work through everything and come up with all the different treatments.  People are so clever.

 

anyway enough of me.  Thinking of you all ladies and good luck for scans/results/treatments this week.  Hoping to go back on treatment on Friday if onc agrees tomorrow so fingers crossed.

 

huge hugs xx

jenny29
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Re: Bone mets - please join in

Hi,   I totally understand that some people prefer not to see the scans, just thought I'd share my experience about it, incase its useful.  I've seen my scans for my spine mets - it showed up on the scan but doesnt look like anything in particular, just more or less bone in that part of my body.  

redridinghood
Member

Re: Bone mets - please join in

Carolyn,

 

Just to respond to your saing you aren't confident about being on letrozole only. If you are very ER+ve it can work well.......robs the c of what it thrives on.......although as usual for us everyone is different. i had SBC dx in Nov 2014, and being ER8/8 was put on letrozole straightaway, at first appointment. It seemed to be automatic, long before I saw onc. I was told it can work in 3 months. I had bone mets.......one rib, sacroiliac joint, lower lumbar vertebrae and sternum..........as well as lungs. Well, at first onc appointment in Feb 2015 he was smiling and said lung mets had vanished. After 3 months. Since then bones stable......although i have one skin patch on my chest which has quietly grown from nothing despite being stable inside. I had radiotherapy at the Churchill for that skin 6 weeks ago and it seems to have shrunk. Not disappeared though. Was hoping it would kill the little ..........s. Fingers crossed. Had scan last week, saw registrar yesterday, and  inside still stable. I have daily letrozole + denosumab for bones. I have no ses except hot flushes, and maybe hair a bit thinner, so lucky there.

 

So, I am just saying that letrozole on its own can work. From reading the threads it can work for years for some. I would be 'happy' except for the skin met. Another world, skin, and they can have a life of their own. Nobody understands them, and when I ask why it progresses when I am stable everywhere else, they just smile. There is a separate thread for us 'skinnies'!

 

Take care everyone. April showers here.....but at least that is normal weather, and seasonal!

 

mo........xx

julzd
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Re: Bone mets - please join in

Hi Sharon yeah see him Friday before treatment Tuesday this three weeks has flown over x x
scratch
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Hi jultz I love a bargain.bet you cdnt believe it..thats made your day..is it yr oncologist this week? Xx. Decisions for you then..Sharon...❤
Carolyn52
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Jeanette.
Yes mine are serious in left hip, femur , pelvis and spine but like you ..I don't look at the scan as I tend to bury my head in the sand as far as they are all concerned.my mobility is limited and I have to use a stick .
I just trust my oncologist but she is retiring in May and so the safe hands are being passed over to a younger whipper snapper I expect.
Hugs xx
rosie53
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Re: Bone mets - please join in

Yes Carolyn, it's 6 months for me too, think your mets are in a similar place to mine too?? Hips ribs and spine? I keep toying with asking to look at my scans, I have no idea of the detail/how much they are diseased I've never wanted to...."ignorance is bliss" I'm a real stress head and I don't know whether I could cope with all the gory details! 

Hugs Janette xxxx 

Carolyn52
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Re: Bone mets - please join in

Jeanette we are at much the same stage I think. I've been on leyrozole for six months now, waiting for my ct scan appointment and then seeing oncologist may ish for results.
I like you don't feel confident with letrozole holding things under control but don't want to go chemo route !
Fingers crossed
Hugs xx
rosie53
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Re: Bone mets - please join in

Thank you ladies, she said she will ring me tomorrow to let me know what the new test result are, she said it could just be a blip, I'm not overly worried it's just that since I've been on letrozole I haven't felt great, i can't decide if it's side effects or I'm not responding??!! Had my TMs done last week and have CT on Monday then it's the dreaded results day with onc on the 28th!!!! 

Hugs Janette xxxx 

Marie123
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Hi Janette,

I really wished we lived nearer. My white blood cells have been low for the last 6months. Depending who looked at the results I was given , nothing to worry about or we need to keep an eye on this. Apart from a cold and a tummy bug ,I have been well. The last FBC came back as satisfactory , this was good enough for me. I don't know why it happened.

Apparently oysters are good for wbc, but not much else. However I did put myself on berocca, don't know if this helped or the spring weather. I was worried , but it was just a bleep. Hope this makes sense. We can have our coffee in the cyber cafe.

Take care Marie xxx

 

 

Carolyn52
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Re: Bone mets - please join in

Hiya Jeanette .
I have exactly the same with the white cells. Oncologist asked me the same question about infection . She doesn't worry though and still got the bone injection last week. I don't think they know really! If they do ..they don't let on.
Hugs xx
rosie53
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Re: Bone mets - please join in

Hi ladies, just a quicky?  Had my full blood count done on Friday, got a call from my bcn today to say my white cells are low and onc wants me to have them re-done  (which I did this afternoon) I haven't had an infection or anything?? Has this happened to anyone else? Prob just being my usual stressy self! 

Carolyn, I'm not going to read anymore of that book, just using my own common sense, listening to my onc and also my cyber friends 🙂

Hugs Janette xxxx 

Allibee
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Hi Carolyn, I'm happy to keep my hair as long as possible, I'm due 3 FEC then an MRI then fingers crossed FEC is working then 3 more FEC then tamoxifen was talked about but I guess it's based on the scan. I can only hope that chemo is doing what it should! Can't think too deeply about anything at the moment to be honest! I'm trying to do this day by day, and toddy is a relatively good day.😃
Carolyn52
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Allibee. I agree with trying to hold the hair a bit longer. I'm sure if I remember rightly I still had quite a lot of hair up to chemo 3 although by then it was itchy and sore.
U will probably only have 4/6 FEC and then switch to another one and maybe will get some regrowth . I was on CMF but I don't think they use that one anymore but it started growing although I felt a lot more tired .
Hugs xx
Carolyn52
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Re: Bone mets - please join in

Hiya Jeanette and Sharon

Well finished THAT book this afternoon and can honestly say I have gained no inspiration at all from reading a whole book.
It seems to b that this lady has a whole army of professionals and nutritional experts involved but doesn't really elaborate on them much but just shows a whole list at the back of the book.
This is just me and Im sure a lot of other readers of it will have different opinions.
Hugs xx
Allibee
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Hi Maria, typical about the leg hair, Im the same about shaving. i might have to invest in an electric razor. Yes I do feel better now hair is shorter, I'm not ready to shave it off yet, I'll wait until it's really patchy before I do that. I'm feeling tired this afternoon so taking a little rest before I make dinner. Hope you had a good day at work today, chat later. Hugs
Carolyn52
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Re: Bone mets - please join in

Hiya allibee and Maria
Glad that you are both coping so well as its a hard journey but once the hair goes ..it's gone for a while.
Not sure about the leg hair? It will probably go quickly now the chemo is established. Just think of the chemo as the army marching through your bodies killing off all the bad guys.
Anyway just wanted to send you some hugs.
Xxxx
Rose47
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Hi Ali,

 

Glad you managed to get your hair cut it will make  you feel better.  I have had a runny nose the whole way through this chemo so I think it must be a side effect, thats what the nurse said on the Chemo Ward to me when my nose was streaming as she was putting the 'Red' stuff in !   I just worried that I was getting a cold.  As for legs,  I didn't shave mine as I thought the hair would come out but no its still there and I just hope I don't have to put shorts on anytime soon.  Bit worried about shaving them as knowing me I will take a chunk out of my leg and  either

 

a) get an infection

b) won't be able to stop bleeding

 

Thats the drama queen in me over thinking even shaving my legs lol !

 

So I am stuck with the fuzzy legs ! 

 

Big Smiley Face xx

 

Allibee
Member

Re: Bone mets - please join in

Hi everyone, yep feeling a whole lot better than yesterday, my friend had cut my hair really short, it's ok I like it. We decided that to shave it off now is to soon, I've got a lot of hair! But to have it cropped is easier than watching long hair come out, plus I'm the same colour as the dog so I can blame him for the hair on the kitchen floor now. When it becomes patchy then I'll have to go. It's beautiful here today it always makes you feel good when the suns out. My picc line is better, I took a paracetamol. My nose is weird I didn't think about nose hair going, that'll be why I'm sniffing a lot! I can't be bothered to shave legs I hope that comes out as well as they are pretty awful! Staying strong today. Hugs. X
julzd
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Re: Bone mets - please join in

Hi everyone raining here in Newcastle got a good bargain today bought a throw over for my daughters bed €50 reduced to €4.50 couldn't believe it. Hope everyone's feeling ok I'm still deciding what to say to oncologist about my next chemo after being sick for those six days I'm a bit scared of having number 8 x x
Carolyn52
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Re: Bone mets - please join in

Hiya Jeannette and Sharon
Couldnt face THAT book last night so still half way through. Dug out an old Marian Keyes book ..lot more relaxing.
Allibee.
Hope yr feeling a bit better today now Sun is shining here. You said yr nose felt funny ..Could it b u have lost some nasal hair too and that's what it is?
Hugs xx
scratch
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Allibee..at least your picc line ok..just for now deal with the treatments..count them down your already started on the countdown..
Plan something nice on good weeks....❤
scratch
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Re: Bone mets - please join in

Carolyn.well thank youv saved me wasting twelve pounds on This book.xx. I cant embrace this thing inside me.your right not a normal cancer patient....i nearly bought it but was waiting for your review....take care Sharon.x
Allibee
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I know your right Carolyn, I'm In one of those moods that's hard to get out of, I'm not going to think about anything more than this treatment for the next 6 months. My hair started this rubbish in my head! I'll be ok when it's cut off and I start getting used to being Mrs no hair. Plus my nose is weird, not the shape or size!! It feels odd. On a good point picc line is ok since hospital/paracetamol, sorry for the moan I'll stop now! Xxx Alli
Carolyn52
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Hiya allibee and all.
Best not to think too far ahead as I'm like you and 80% of other ladies .don't qualify for herceptin as have the wrong sort of cancer.
I think I'm right in thinking though that HER positive for herceptin is a more aggressive type of cancer. I'm not sure though.
Just focus on your chemo at the moment as it did the job for me for twelve years.
Hopefully there will b a magic bullet soon but this ibrance one is looking promising once it's funded here in the UK.
Glad yr picc line is more comfy tonight.
Hugs xx
Carolyn52
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Re: Bone mets - please join in

Jeanette.
Ps . I think I was hoping for something different than a diet of juiced things.
Like stand on my head for five minutes a day singing let it go or even dancing on the roof of my car or something !!
Hugs xx
Carolyn52
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Re: Bone mets - please join in

Hiya Jeannette . That stupid book ..wish I never bought it as its all down to diet again isn't it?
I want to finish it to get my £12 worth but isn't it repetitive and padded out to fill pages.she basically says its not a cancer battle but we have to embrace it somehow and jot down answers to questions.
This is not an ordinary patient like the majority of us as she has been to all these retreats and nutritional experts etc.
Anyway will try to finish it ..
Hugs xx
scratch
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Jenny.29....nice to hear from you...think diets might make people think they're controlling their illness and obviously we all know what's good and bad with food..just eat sensibly I think.xxsharon....the newspapers make me feel bad sometimes about sugar and alcohol...I dont read those bits anymore..best wishes Sharon x
scratch
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Hi allibee.yes nothing prepares you for the hair going..its like looking at a different person in the mirror....i never accepted it..but admire people who say they don't mind its only hair...always felt like friends were studying me...still do like on parade..small discreet looks..when I got in a paddy once I covered bathroom mirror up..drama queen..❤ usually I'm easygoing ...but it will grow back..it will feel wonderful..sharon❤
scratch
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Hi jultz .i do eat on first weeks docetaxol but picky..then as you said lots ..havnt put any weight on though....got ct on 11th.havnt had follow up appt thru yet..xx take care sharon
julzd
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Hi Sharon do you find with the docetaxcol you can't eat for about a week and a half then the good week you eat everything in sight I can't stop eating this week. When do you find out what's happening next? X x x
jenny29
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Hi everyone I havent posted for ages, so thought I'd make a quick post.

 

It was interesting to read the recent posts about diet as mine always goes down hill a bit over the winter and I've been feeling a little gulity over it and I cant help wondering whether or not it makes a difference. 

 

Sharon, I havent read those books but sound interesting. After my SBC diagnosis bone mets, they decided to leave a very small local reoccurance untreated.

 

 

Allibee
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Hi Sharon, thank you for getting back to me, im due to have second FEC next week, because of my hair starting to come out it made me feel like I did 6 weeks or so ago when initially diagnosed with BC and liver mets. I've been thinking to hard and panicking myself. At least the FEC is working! I'll get back on track get the second dose under my belt and carry on. You take care.hugs Alli
scratch
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Hi all no I dont think its food....Jane plant was a professor but I dont think she had secondary cancer...if I could put mine on anything I was under a lot of stress before diagnosed..but who knows ...dont give up the treats..❤ Sharon.x
scratch
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Hi allibee I have same questions as you although further down the line..iv had fec/cmf ..tamoxifen five years radiotherapy twice..then a year on capecitabine.then nine months on letrozole.now just finished docetaxol..so will find out in a few weeks time from oncologist..not so many new drugs available for er ..but there is more..sharon..xx
Waffles
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Hi everyone
When I was diagnosed with secondaries last summer I decided to cut out sugar and carbohydrates from my diet because I read all over the internet that these 'feed' cancer. Well, fast forward 5 months and I was a stone lighter ( I'm skinny anyway) but my mets were much worse. I'm not blaming my change of diet for this, obviously my treatment hadn't worked. I've since changed back to my normal diet put on some weight and am having a lot more success with my most recent treatment. Basically, I think the sugar/ carb free diet made no difference at all to the cancer but caused me to lose weight I didn't need to lose. Best wishes xxx
rosie53
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Thank you ladies for the moral support, I also believe it's done to faulty cells. Glad I'm not the only who is not going to be made to guilty about what I put in my mouth!! Everything in moderation is my moto, it's rubbish enough as it is living with this disease without the pressure to cut out our little treats, I for one will still be having my Saturday night glass of wine and my Dairy Milk 😀

Hugs to all Janette xxxx 

julzd
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Hi all I allibee I panic about not eating properly but I think whilst your on chemo you just have to eat what you can it's hard enough without worrying about food. I stress everytime I have chocolate and that's everyday lol everyday I say I'm going to start eating better x x
Allibee
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IHi Maria, I think your right, chocolate, dairy, wine this did not give me cancer faulty cells are to blame. Im not going to read and be made to feel that something I've eaten done or not done has contributed to my breast cancer. I've got enough going on in my head without that. I've just come back from the hospital they repositioned my line and told me to take a paracetamol, so hopefully that will stop aching soon. I was hoping to have hair cut today but my friend staying away she's caught a cold. Hope you girls are all feeling well, I'm off to have a cuppa and a homemade brownie!!' Xxxx
Rose47
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I have a friend who is not privy to my secondary diagnosis at the moment and she gave me the lecture on no microwaves, only eat organic, natural make up, no aerosols etc etc but I haven't paid much attention.  We eat well but also have junk days.  The only thing I have given up is wine which I love but that's only because I didn't want to add alchohol to the chemo/liver mets party.  Xx

rosie53
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Hi Carolyn, I'm just lay on the couch with the "poorly blanket" after a rotten night with pain in my right side, don't know where it came from.....felt like I had been kicked by a horse! It's eased off a bit now but I'm sooo tired today. Anyway I decided to sit here and read the Cancer Whisperer I'm probably almost half way through and decided to skip a few pages and came across her diet suggestions!!!! Omg I wouldn't know what to eat if I followed her recommendations, I'm not the world's most healthy eater but also I'm not the worst either. We don't eat much "junk food" but I'm no Delia Smith either! So yes I am now feeling how I was hoping NOT to feel when I decided to buy this book....guilty!  Also did you read that she said banish microwaves from your life? I don't use it for microwave meals but I do use every morning to make my porridge! 

Like you I think I'm going to buy some more easy escapism reading instead, yes I have stage 4 cancer and HATE the fact it has decided to descend on my body and poison it but I am NOT going to feel guilty for my lifestyle choices, I like to think I have a fairly healthy lifestyle and always have......what about all the junkies and drunks out there who get bugger all but their own self inflicted illnesses. 

Sorry for the rant but that book has put me "on one"

Hugs Janette xxxx