71.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

julzd
Member

Re: Bone mets - please join in

Hi Sharon hope your feeling ok and the side effects are keeping away X X 

alockyer
Member

Re: Bone mets - please join in

Great to hear that Funnyface has proved the oncologists wrong! I got the usual 2/3 years, even though I asked not to be told, and now can't get that figure out of my head! Made me sooo mad! I've heard good things about Ibrance with fulvestrant. Would be nice to move to the US for treatment! x

scratch
Member

Re: Bone mets - please join in

Hi Mrs r2b.yes I feel bad on days just had docetaxol yesterday prob get it tomorrow..feel like bus effect and someone stabbing me in legs .pains in ribs..so side effects crappy..take care Sharon.xx
julzd
Member

Re: Bone mets - please join in

Hi Mrs2b I've had aches in legs and ribs off docetaxcol but not really painful but I remember the chemo nurse saying I would feel like I'd been hit by a bus that was before my first one ! Made me feel great lol Julie X X 

Rose47
Member

Re: Bone mets - please join in

Hi MrsR2B

 

i don't have any experience of your chemo I am on Fec diagnosed with primary and secondaries in Feb this year.  Is there any chance you may have slept funny ?  I know it's hard now to not assume every ache and pain is something more sinister ?  Have you something you can take to help you relax and ease the pain.  Hopefully someone will be along soon that can give you good advice.

 

Maria Xx

MrsR2B
Member

Re: Bone mets - please join in

Hi all, looking for some advice. I'm 5 days since my last docetaxel, have had various aches and pains over the 6 sessions but have woke up this morning with what I can only describe as the kind of pain in my back and legs that I would expect to have if I'd been hit by a car :-(. I know they say chemo is cumulative so se's will get worse but was just looking for some reassurance that this pain is 'normal'. Thanks for any help in advance x
Carolyn52
Member

Re: Bone mets - please join in

Hiya funny face.
I was wondering where u were as u haven't popped into the cyber cafe lately. Maybe not your sort of thing now that Helen and Belinda have their wings.
What an amazing inspiration you are and can't believe your body has coped with so much chemo over the years though. Do u take vitamins or anything else?
I not sure if ibrance will ever get financed here in the UK but it would b another option for ladies like myself that don't qualify for herceptin as we have the wrong cancer type.
Hugs xx
rosie53
Member

Re: Bone mets - please join in

Hi welcome MrsR2B, sorry you have had to join us though, pleeaaassse don't put an expiry date on your disease it's poppy cock when they give you information like this!!!! Makes me sooo mad! As you have already seen with funnyface we are a strong bunch us met girls and are here for the duration.  Everyone is individual and no one cancer is the same so how can they put a time scale on it, I have a friend with secondary on her liver and they gave her 6 months.......that was 12 years ago! 

Go and enjoy your life and just be sensible with diet and lifestyle. 

Hugs to all Janette xxxxxxx 

MrsR2B
Member

Re: Bone mets - please join in

Thank you so much everyone. I feel like tonight is the first time I can go to sleep in a long time feeling a little but lighter for sharing. I really appreciate it! 

 

Funny face, your story is just what I hoped to hear when I decided to post, 10 and a half years is fantastic! I suppose they can only give us dates on statistics and we are all individual people with our own reasons that won't let us lay down and be beaten.  I hope your treatment is still working well and you don't have to have another change x

 

Chocolates
Member

Re: Bone mets - please join in

Julie, forgive me but it gave me the giggles - you staring at the faces intently when seeing onc etc.  My forte is talking - I get so nervous I talk, talk, talk.  What a lot we are.

 

MrsR2B welcome to the thread. It's so hard to,put everything in writing isn't it. Makes it real.  You've had a tough time physically and emotionally and often the hospital becomes our safe place. When that eases up we feel lost. It is hard to adjust to but it is also welcoming once you find your feet. Are there any counsellors or free treatments available to you.  This might help to bridge the gap mentally and in time help you adjust to your new normal.  You'd still be going to the hospital but not for treatment.  Then you can scale that back when you are ready.  I hope yu find our thread as supportive as I've found it.

 

karen, good luck tomorrow.  Please let us know how you get on.  Have my fingers and toes crossed.

 

sharon - that was a long, long day.  Bet you're glad you're home.  Feet up now xx

 

hxxx

 

 

funnyface
Community Champion

Re: Bone mets - please join in

Hello Ladies, I wanted to give a shout out to the newbies first. Don't listen to these oncologist and their expiration dates. My oncologist told me average life expectancy was 2 years. I have been here 10 1/2!! I have mets to both lungs, lymph nodes in chest and a tumor pressing on an artery to my heart. I'm hoping you ladies are just as lucky! I have done Lupron injections (didn't work), then Abraxane/avastin combo 6 monthsr but stopped bc it was harsh can use it again bc it was still working), vinorelbine (navelbine took for 5 years), xeloda(capecitabine..took for 2 years), gemcitibine (8 months had a toxic reaction to it), currently taking letrozole and ibrance ( 7 months so far ...CT today..results Thursday...I live in the US...ibrance isn't available in the UK yet). I only ever had one chemo break. That was for 6 months after the abraxane/avastin combo. All my other chemos were given back to back and stopped when something grew. Hoping my treatment is still working don't want another change. I hope this gives you some encouragement. 

 

To all of you ladies having stomach issues, I hope you can get sorted out a little better. I've been having a few too. My gut acts like I have IBS. I have never told my onc,but going to on Thursday. I feel like I can't go out much unless the loo is nearby. I can't run of walk fast! If I eat then I have to go.

 

Hugs to all! FF

KazMOr
Member

Re: Bone mets - please join in

Thank you, that is good to know. I have been dreading starting the Zometa, I suppose it is the fear of the unknown. Since my bone mets was diagnosed last year , I have had surgery on my spine and now have daily hormone tablets ( letrazole) and monthly injections of Zoladex....which have all been fine. But I was worried about starting the Infusions.
Thanks again
Karen x
MrsR2B
Member

Re: Bone mets - please join in

Hello kaz, 

I've been having zometa every 4 weeks since October and can honestly say I haven't had any real side effects apart from feeling a but flyey after the first one (could of been a coincidence) all others having been fine. I wet from not being able to lift my left shoulder enough to even brush my hair to having really good movement and my pain in my shoulder and neck is always a lot better within a few days after my infusion. I had 2 wisdom teeth removed prior to starting the zometa as supposedly can't have much dental work once it starts. The only part I have struggled with is the calcium tablets they have given me to take after, they are vile, I really struggle to take them but needs must I guess. The zometa has been great for me I hope it is for you xx

julzd
Member

Re: Bone mets - please join in

Hi I'm sure he will have a plan for you. I think they do it everyday and don't realise are minds race . I never ask questions can't get out quick enough but I try and read their minds and stare at their faces to see if I can tell anything same when I go for a scan I make things up in my head and convince myself I'm right it's crazy ❤❤

KazMOr
Member

Re: Bone mets - please join in

Hi MrsR2B,
I am due to start zometa for my bones at the end of April. I Would love to know how you have found them?...have you had many side effects??
KazMOr
Member

Re: Bone mets - please join in

Hi Ladies,

Sorry I havent been on for a while. Things have been rather manic in my world lately. Mind you I have been glad to be busy, as it takes my mind off of waiting for results.....But tomorrow is the dreaded day...Tomorrow I get my scan results,my first one since having radiotherapy and the Star Ablation treatment on my spine....to say I am nervous is an understatement.....

My logical brain tells me that no matter what they say tomorrow, I will stay strong and deal with it but that doesnt stop the worrying. I know I wont get much sleep tonight. So i thought I would find the time to chat to you lovely ladies. You are always so lovely and positive, which helps alot.

Hope you are all doing well

Karen x

scratch
Member

Re: Bone mets - please join in

Caroyln..its not a shampoo its like a powder that you brush on not permanent so cant fo any harm un all shades..looked at it online looks ok.x take care❤ sharon
MrsR2B
Member

Re: Bone mets - please join in

Julie he was very vague with any emails on hormones, just that a jab a month and daily tablets. Hopefully will know more on the 13th when I see the onc. I've been having zometa for my bones and pain does seem to have calmed a bit so maybe I can take that as a positive. Chemo has truly been like a comfort blanket, within a few weeks of diognosis I was having treatment so the idea of things slowing down is terrifying. It's so nice to talk to there in the same situation, people try to understand how you feel but I don't think it's possible to unless you are living it. Thank you all ladies x

scratch
Member

Re: Bone mets - please join in

Jultz. Glad last one done but dont feel elated..because now I feel in limbo land again..oh well once I get side effects over Il bounce back again.like someone blogged like a punch bag gets knocked over and comes back up again.be it slightly slower every time..❤❤🎶 x
MrsR2B
Member

Re: Bone mets - please join in

Hi Sarah,  it's the scariest thing not knowing how long you will have with these small people who are just the most amazing thing ever, my body may be failing me in many ways but I will always appreciate the fact it made my little lad. I try and appreciate every day with him but I have so much anger when I know I will be taken away from him. I am going to make some big changes in my diet and lifestyle choices, have always lived quite healthily but have put on a tonne of weight with this chemo, it seems as soon as I feel ok again I can't stop eating and all the wrong foods. My son is just starting to wean so as I will be cooking healthy meals for him it's the ideal time to get back on track with my own diet. 

I never asked my doctor how long he may think I have, probably because I was too scared of the answer. I'm not sure whether I should find out? 

 

Good luck with your results on Thursday,  I hope you get great news and whichever new drug they put you on isn't too horrible. Thank you for your reply x

 

scratch
Member

Re: Bone mets - please join in

Sarah Louise.dont let the oncologist put a time on your brain live love in the moment yes changing diet taking control back helps a lot..good luck with your treatment.rake care sharonxx❤
julzd
Member

Re: Bone mets - please join in

Hi Mrs2b I have lung and liver Mets my halfway said they had shrank I get my next scan on the 18th then I go on herceptain and perjeta I know what you mean about stopping the chemo even tho it's awful it's there as comfort but the hormones can keep the Mets at bay. Some people reach ned (no evidence of disease) I've read a lot on the American inspire sight they seem to know a lot about it. There's new treatments coming out all the time that's what the nurses keep telling me. If your Mets progress they put you back on something straight away as they keep saying its treated as a chronic illness now but I know how you feel I'm nervous about my scan coming up too. Did they say what hormone treatment you would get ? Your bones might be doing ok if they arnt scanning them for a while I haven't had a bone scan so I don't know how it works . ❤❤❤ Julie X 

scratch
Member

Re: Bone mets - please join in

Hello mrsr2b...i had mascectomy.chemo radio.in 2004 then five yrs tamoxifen.then it came back .i went on capecitabine chemo tablets for stomach and bone and demosumab injection once a month.then I went on letrozole for 9 months.then docetaxol I mv just had my no six today.ct on 11th then oncologist.i really feel for you with a baby .you must enjoy every day with him..you are a good mum you cant help getting ill
Write things down on here I just used to read .but writing down helps to say what you don't say to family..if yr going on demusamab you will have monthly blood test to check you so you will be well monitored. Lots of advice from everyone who understands how you feel..sending you and your baby 👶 lots of love..takecare Sharon.xx
Sarah Louise
Member

Re: Bone mets - please join in

Hi MRSR2B I know what you mean when you say you want to be here for as long as you can for your little boy. I'm 35 and Mum to a 3 and 4 yr old.
I and was diagnosed with bone mets on my spine, pelvis and thigh in January this year (diagnosed with primary in Dec 15) The Oncologist told me I have 2 yrs max and my first thought was how are my babies going to get through life without their Mummy? I try and spend as much time as possible with them and I cherish every moment with them.
I'm due my 4th chemo next Saturday although my Oncologist was talking about switching to a different one as the lump on my breast isn't going down as quickly as he thought it would. I had a CT scan last week and will get the results in Thursday when I meet with him. I'm dreading the results!!!
I think the key is to stay positive. I have recently changed my diet and feel more in control now.
Big hugs to you xx
julzd
Member

Re: Bone mets - please join in

Hi Sharon definitely go it was fab just what I needed so funny. It's a nightmare when it's a long day such a relief to get out. Glad your bloods were ok if they have dropped that's a good sign I'm sure I read they can show high even if Mets have shrank because there still in the blood. Hope you get some sleep tonight. I think I'm over the worst now I think it's just the normal awful taste . YOUVE DONE IT LAST ONE 🌟🌟🌟🌟🌟🍸🍸🍸😁😁❤❤ Julie X X 

MrsR2B
Member

Re: Bone mets - please join in

Hi julie,

I did have a scan after my first 3 cycles and there was good shrinkage of liver but they say they won't scan bones again for a while so not sure what's happening with them. I think the results of the first scan have made the idea of stopping the chemo scarier as it was clearly doing some good. I feel like I don't know what questions I should be asking and although my Dr's have all been fantastic i do feel like they don't always give me a lot of information. Thank you for the reply, it feels nice actually talking about this with someone who isn't family as I worry that it's upsetting for them to talk about it with me x

julzd
Member

Re: Bone mets - please join in

Hi Mrs2b sorry what has happened to you I bet your a fantastic mammy . I know how you feel about the docetaxcol I've had 7 and I feel terrible it's an awful chemo. I've been terrified but there's a lot of lovely ladies on here who know loads off stuff and have put my mind at rest . I think there's lots of treatments you can take some women haven't even had chemo and they are doing ok. Did you have a halfway scan had your Mets stayed stable then ? I'm sort of new to this as my primary was the same time as secondary. There will be someone on soon who has more knowledge. Take care Julie ❤❤❤

scratch
Member

Re: Bone mets - please join in

Jultz.may go and see that film.i often take my 8and 6 yearold grandchildren to cinema.for kids films I love them..the best so far is zootroplis.it was very very good..it makes me relaxed. Hope yr sickness goes soon.didn't get out till 7tonite. Hosp extra busy as been Easter hols. My bloods were fine.c153 markers dropped a tiny bit but still high..got jabs all over me.bloods .chemo..and demusomab injections.feel tired but steroids kept me awake lastnite..whendo you see yr oncologist now. xx
MrsR2B
Member

Re: Bone mets - please join in

Hello.
I'm new here but not too newly diognosed. I had my primary diagnosis in 2012 at the age of 24, had mastectomy, rads, chemo and was taking tamoxifen, all seemed to be going well, I got married and had my first baby, a beautiful little boy who I couldn't love more but thone carefree new baby days didn't last long. He was only 2 weeks old when in october 15 I found out what I had been told was a frozen shoulder throughout pregnancy was in fact bone mets, I have many, ribs, shoulder, spine,pelvis,neck and also 5 spots on my liver.
I have read some posts on here now and then but never felt brave enough to post. I am now as I have just received my final of 6 doses of docetaxel and the fear of not having chemo has hit me. It's been horrendous and I am desperate to enjoy my boy without being wiped out every three weeks by chemo meaning I'm a pretty useless mummy for a week but also it feels like I'm letting the cancer grow whilst not having any chemo. I'm having a ct scan on the 6th and onc has said if all stable I will go to monthly injections and daily hormone tablets, I'm worried that it just doesn't seem to be a hard hitting treatment like chemo. Sorry for the ramble but this is the first time I've wrote it all down. I just want to be here for as long as i can for my little boy, i hate the thought that he will be without a mummy and i cant fix this when im supposed to be the one person who makes everything ok for him X
scratch
Member

Re: Bone mets - please join in

Hi chocolates was up there for nine hours today..bit busy as been shut over Easter hils was still people there when we left at 7.take care Sharon.x
Chocolates
Member

Re: Bone mets - please join in

Hi Christina, welcome to the thread. We are a lovely bunch, a bit mad at times but so supportive. Nothing is off limits and believe me one of us will have experienced it so don't worry about thinking it's only you.  Looking forward to chatting 

 

Julie - so glad you went out to the cinema - it lifts the spirits doesn't it to do something and a change of scenery. Hope tummy still behaving itself!

 

julie d - sorry to hear you've been unwell - and no chocolate either - that is awful.  Hope you are beginning to feel a bit better now. Please look after yourself 

 

sharon, hope hospital was ok and you're home safe and sound. 

 

Big wave to all the other ladies. 

 

Lots of hugs,

 

hxxx

JulieD
Community Champion

Re: Bone mets - please join in

Hi Christina0,

 

Welcome to the gang, we all wish none of us was here but as we are we pull together and support each other.

 

I really wish these Oncs would stop giving people date stamps! Ok, we may be incurable now but nobody knows how we will react to treatments or deal with the disease and nobody can give us an expire by date. I'm so glad to see you positive attitude. Is there a different Onc you can see who is a bit morepoitive or at least not negative?!

 

Have they sorted out a treatment plan for you yet? Despite the fact we all moan about treatment it is good to know you are on somethn that is hopefully holding the uggers at bay.

 

There is actually a Live Chat session on a Tuesday evening (tonight) you have to register for it but can use your same name, it run from 8.30-9.30, so if you fancy joining  few of us in real time we'd love to see you.

 

Don't forget live chat anybody else who is interested it can be not only helpful but fun.

 

I've had a lousy tummy the last couple of days, lot of visits to the loo and also being sick. Not fair, I  haven't even eaten any Easter eggs!!Smiley Sad Going to have a boiled egg and soldiers tonight, isn't it funny how we revert to 'nursery' food when under the weather (well I do).

 

Hope the weather has calmed down for everyone. Lots of love to ll my boney friends xx

 

Carolyn52
Member

Re: Bone mets - please join in

Christina . You go for it girl and give cancer a big kick up the rear end ( can't swear on here)
Sounds like u r ready to do battle.
Hugs xxc
julzd
Member

Re: Bone mets - please join in

Hi Christina everyone's fantastic on here 😁 well I felt a bit better today went to pics to see the new Eddie the eagle film it's fab really funny defo worth going to see. I've came back and the stomach is having a few twinges so I'm not going to move . X X 

rosie53
Member

Re: Bone mets - please join in

Hi Christina, welcome to the boney thread, you will get lots of support her from us.  You sound like your ready for a battle......good for you girl!!!! 

Hugs Janette xxxx 

Christina0
Member

Re: Bone mets - please join in

Hi Scoobiesue

 

 

Thank you for the warm welcome! I've got a big fight to pick with C - we'll see if I'm a loser - NOT!!

 

hugs to you xx

Christina0
Member

Re: Bone mets - please join in

Hi Carolyn

 

Thank you for the warm welcome. Sounds like I've come to the right place! 🙂 xx

scoobiesue
Member

Re: Bone mets - please join in

Hi Cristina and welcome. You will find the ladies will offer sound advice and good practical knowledge. I love your attitude. Keep going brave lady. Look forward to getting to know you. Love to all. Particular hugs to the chemo ladies. Hope it treasts you less harshly. Baking cakes. Eat your heart out Mary Berry. Love to all. Sue xxxxx

 

 

 

Carolyn52
Member

Re: Bone mets - please join in

Hiya Christine and welcome. I was here posting so I will be the first to send you some hugs and say stick with us and you will find a host of help and support from other ladies that have been there and got the tee shirt.

Also join us in the cyber cafe and get involved in the nonsense if you have a bad day and want to escape the C word.

The community members will be posting soon and they have such knowledge and kindness to help you through this black time.

 

But hugs xxxxxxxxxxxxxx:

Carolyn52
Member

Re: Bone mets - please join in

Hiya Sharon and Jultz ...

Bst of luck and Ihope you are both coping. I would be very interested in the new boots shampoo as Im fed up with swallowing hair and if I wear black  ...........well it sits all over it.

Jane Plants book was the only one I ever bought back in the days too ..but obviously I didnt follow it and hence the reason Im sat here with mets.  Ive just googled her and she is still alive and nearly 70 so she must be doing something right !! These extreme diets might work but what a miserable life eating all the rubbish food that only gives us wind !!!

I hope that you are both popping into the cyber cafe ... its a bit of fun and rubbish but might cheer you both up and get away from the c word.

 

Hugs xxxxxxxxxxxxxx 

Christina0
Member

Re: Bone mets - please join in

Hi everyone

 

I'm new to bone mets.  A couple of people recommended I join in the chat, so I've popped in to introduce myself. 

 

I am 55 years old, and I have secondary breast cancer in both lungs and large tumour on my heart.   Oncologist said I only have months left, but he clearly doesnt know me lol  I am sticking around for MUCH longer than that!

 

How is everyone today?  Hope you are all as well as can be expected, gentle hugs (((((( )))))) xx

julzd
Member

Re: Bone mets - please join in

Thanks Natalie hope you never have to go the chemo route 😁 I've got all the tea Sharon it's drinking the bliddy thing lol good luck today get it overwith you are a star take care ❤❤🌟🌟

scratch
Member

Re: Bone mets - please join in

Hi Carolyn..just trying to delay hospital hubby waiting patiently..by the way my hair thinned on letrozole a bit..boots selling new powder for roots by john Frieda..going to have a look to see what its about..sharonx
scratch
Member

Re: Bone mets - please join in

Hi Carolyn..i did buy Jane plants book years ago.very interesting about diet..xx hard to stick to though when your not just cooking for yourself..i am a bit of a shopper .first of all it was new carpets and new furniture.now just bits and pieces ..argos offers catalogues..etc...take care just leaving for chemo.😁 x
scratch
Member

Re: Bone mets - please join in

Jultz.just going hos now..i get a ginger and lemon tea .also peppermint tea both seem to help as no milk and give me water intake.ginger helps sick.mint settles stomach..xx thanks for calling me a star .❇ you too
rosie53
Member

Re: Bone mets - please join in

Hi julzd, sorry to read your struggling at the moment, sorry I can't really give you any advice as fortunately I haven't been down the chemo route......as yet! Sending you lots of cyber hugs though, just a thought but have you tried ginger biscuits? I know ginger is meant to be good for sickness. 

Well it's back to normal now easter is over, lots of fruit and veg on the menu to get rid of the pesky chocolate calories iv accumulated over the weekend! 

Hugs to all x

julzd
Member

Re: Bone mets - please join in

Chocolates I'm ringing for cream today and yes I haven't took the extra sick meds cause I didn't want to be bunged up lol we must all think the same haha X X x

Chocolates
Member

Re: Bone mets - please join in

Julie, I was so similar to you - sickness - sore nose - still have that. The nose cream naseseptin (sp) is great and works wonders. I had lots of anti sickness meds and was living off them.  At first didn't want to take as thought might bung me up but onc said no - it's the chemo - take regularly - so I did and at least kept that at bay. Yes, had loads of jelly - not ice cream, but ice lollies also - loved the coldness. And bizarrely pot noodles I could stomach - not normally. Was all over the place, dried biscuits mainly and jelly but hey ho - was what I needed and could tolerate. Feel for you xxx

julzd
Member

Re: Bone mets - please join in

Thanks Carolyn hope your not in to much pain ! All of you have been fantastic thank-you 😁 Sharon good luck with chemo it's your last one your a 🌟🌟🌟

Carolyn52
Member

Re: Bone mets - please join in

Hiya jultz ..I'm so glad you have had some sensible good replies to help you. You will note that I'm a pain in the b.m with anything sensible as far as medical stuff is concerned.
But I am sending lots of hugs ..a big salute to what u r putting your body through to halt this cruel disease we have all been plaques with.
Xxx💓💓💓