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Bone mets - please join in

scratch
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Re: Bone mets - please join in

Hi mint tea..how lovely to read your good news.you must be over the moon..xxsharonxx
scratch
Member

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..Hi wont
watch it
got enough of it in real life ❤ Sharon.
Carolyn52
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Hiya ladies.

Not sure if watching eastenders tonight was a good idea. Peggy Mitchell was given the news we all live in fear of.

I hope they do a good realistic picture of her illness though and although it's only a soap. ...hits home to all of us I think.

Anyway loads of hugs xxx

LYNDYLOO
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Re: Bone mets - please join in

Hi Lynne

 

 

All she said  it was near bowel, Regarding scan I rang bc after week was told it was  taking  up to  6 weeks now to be reported which in my opinion  is ridiculous  as alot can change in 6 weeks. I was informed  in patients  get reported first so I said could be the difference  between  life or death.  Thank you  for  replying  to my text. Hugs to all. Linda

 

LYNDYLOO
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Hi Sue

 

Spoke to onc secretary  this morning  asked to speak to onc unfortunately  she was clinic explained  to secretary  my worries. She had a word with onc about  my concerns and also whether  I was fit enough  to go on holiday. What I was told I was well enough  to go on holiday and that onc believed  the inflammation  would clear up by then. Fingers crossed it does. How is your treatment  going did you have radiotherapy  to neck? When I next get markers done when pick up next tablets  3 weeks and I am going to ring  them and if they have  gone up again I am going to push for a scan. Watch this space. Onc must hate me I question  everything.  It is the only it is my body. Forgot to mention whenI asked about  high tumour  markers I was told some of her patients  have  tumour  markers of 2,000. Yes that may be so but mine react to even the smallest change. When I was first dianoised they were  just over 200 so they are creeping  back up to that. I am trying  not to worry  but it is hard. Hugs to everyone  must get tea started. Linda

Carolyn52
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Re: Bone mets - please join in

Hiya Mint tea. I just googled the chemo and was chuckling as I thought I had got the wrong thing as it was for prostate until I read your thread! I think its good that they are looking at different treatments and its been good for you.
Hopefully in time ..treatments without the side effects !!
Hugs xx
stresshead
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Hi Mint tea...so glad to hear your news..i have skn mets bt recently had pleural effusions (awful) and the fluid was malignant then on top of that ujst had confirmation that its in my bones (spine and pelvis) so very 'down' at the moment. HAve an appointment at the UCH research faclity next week..have been on their radar for a while  and there was a suitable trial when i just had skin mets but still had conventional treatments to go at so they wouldn't consider me at the time. Now i'm scared that the progression will prevent me going on trials at a later date or even that i'll be too ill to travel and undertake the trial. I wouldnt be so lucky if i went on a randomised trial i'm sure. Just have to hope the carboplatin will help. I wish you good luck and contined success. x

mint_tea
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Re: Bone mets - please join in

One of the reasons they are looking at cabazitaxel for BC (think it's used for prostrate cancer at mo) is SE.  I was told "won't cause hair loss, main SE is diahorrea".  I had one episode of diahorrea each cycle (same day each time) - one dose of immodium and that sorted that.  My hair started to thin after about cycle 3 - not enough to be really noticeable to anyone else, but by the end it was very very thin and after I had finished chemo I did resort to hats for about 6-8 weeks.  Perplexed the research team as they were not expecting that!  Other than just feeling a bit rubbish for a few days and getting a yucky taste in my mouth (another unexpected SE) SES were OK.   No steroids and no anti sickness meds under the protocol, and a quick infusion time, so overall I found it relatively easy.  I had TAC for my primary and that was tough!

Carolyn52
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Re: Bone mets - please join in

Oh mint tea thats a chemo I haven't heard of ..did you get the usual se ..hair loss etc?
I think I'm going to start asking my oncologist about trials as they don't really offer or promote them much.
I think ibrance is going to b the up and coming drug of the future on reading up on it on us websites but of course it's not that available here apart from some trials that are starting.
Hopefully soon the magic bullet.
Hugs xx
mint_tea
Member

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Thanks all! 

 

Carolyn-the Concept trial is looking at cabazitaxel versus paclitaxel for secondary HER-.

It is randomised so I was lucky to get allocated the cabazitaxel  (which was very doable).  It seems the results overall are very encouraging so far, they just need more candidates to be put forward.  Interestingly research team told me some Oncs not very forthcoming with thinking about trials - worth questioning if you are in similar boat.

Lynnq
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Re: Bone mets - please join in

Hello Mint Tea. So good to hear your news.

Hi Lyndyloo, interesting to hear about your bowel. I have been having problems with my bowels for some months now, had both rigid and flexible oscopies, and a scan but nothing to see. Onc says he will write to the Gastroenterologist - who has done these procedures - to 'discuss' it.
Did the onc say wherabouts near your bowel the inflammation was?
Seems a long time to wait for scan results, i usually ring the BCN after 10-14 days if I have not heard.

Carolyn52
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Hiya ladies
Well weather in Devon isn't that special ..cloudy and quite chilly again ..all the nice weather seems to be "up north" for a change!! enjoy.
Hugs xxx
Carolyn52
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Re: Bone mets - please join in

Hiya Mint tea ( nice name ..can't think why I didn't have the sense to have one ..doh)
Welcome and thank you for posting such "good news" . What sort of chemo did you have?
You must be finding the anastrole ( its arimidex isn't it in disguise) so much easier to tolerate too.
Please keep visiting us here and join the secondary private forum where we have lots of things going on.
Hugs xc
Marirose
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Re: Bone mets - please join in

Dear mint tea

Lovely to hear from you and your good news about the liver mets and tumour marker reductions thats brilliant. You go girl forget about cancer and get those holidays booked. Have a great summer.

 

Dear Sue (angle4cat)

See mint tea is on Anastrozole and she has had brilliant results lets hope it works for  you too.

 

Dear Lindyloo

I would ask if you could have your results sooner than waiting so long to to find out the outcome of scans. Maybe your BN could find out the results and let you know. To wait for any results is stressful but to wait weeks is not very good.

 

Dear Sue (scooby)

Nice to hear from you too and everyone else. Weather really changed here just when you start getting the feel for summer it turns wet and cold again. The heat was not very good for my bones I did suffer but i am not complaining I would rather have the sun and stay in the shade than cold miserable weather that makes you feel worse.

 

Love to all xxx

scoobiesue
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Hi Sue. Welcome. Sure one of the ladies will have some sound advice. My SBC made it's self know in March 2015 when my femur snapped. Since then I have been treated with hormonals. Take care. Love to all Sue. xx

 

scoobiesue
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I agree Linda. It seems an age to be just watching something. Perhaps ring the onc PA and ask for a telephone consultation. Gorgeous day in the NE. Busy in the garden. Take care ladies. Love Sue xxx

scoobiesue
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That is the best news, Really made my day. Now yet busy and give the plastic some welly. Enjoy your holiday. Love Suexx

mint_tea
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I don't post much but do keep an eye on this thread and have been encouraged when reading others news (as well as chuckling at some of Carolyn's comments) so thought I would post my latest results, in case others find it useful.  I was diagnosed with secondaries in Oct 2014 - firstly pleural effusion and then bone mets (found during routine annual mammo and US after primary in 2010) - changed from tamoxifen to letrozole (and stated denosumab)  but after 12 weeks "extensive" liver mets arrived so binned the letrozole and started chemo via the Concept trial last April.  Chemo finished July and end of treatment scan in September showed liver mets had reduced by over 50%.  Started anastrozole then and next scan in November showed further reduction, as did scan in January.  TMs had reduced over that period as well. Onc then said "OK,  let's move to 12 weekly scans (rather than 8)".  Had scan Friday and that showed a normal liver, stable bones and no new disease and Onc does not want to see me until September but just wants me to keep an eye on diet! I've been putting off booking some holidays in case I jinxed anything, but the rest of the day will involve heavy use of my debit card booking some trips now I am free for the summer! 

LYNDYLOO
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Re: Bone mets - please join in

Morning All

 

Just let you know I got scan results yesterday. It took 5 weeks. I was informed tumour  markers are now 110 which I queried as being very high for me as they used to be 15. She also said scan showed inflammation  near my bowel.They are not sure what it is but onc said I would now be scanned  every 3 months to keep an eye on it. I dont know about you ladies it seems a long time to see what is causing it.My next appointment  to see onc is 2 months then from that she will request  a scan. Normally tskes about  3 weeks to get appointment  then about 6 weeks to report it which in affect means from one scan to another takes about 5 montbs between each scan. I feel alot can happen in 5 months. What she also said she would not change treatment from bloods alone. Anyway enough about  me how are all you ladies today? Linda

Marirose
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Re: Bone mets - please join in

Dear Sue

Welcome to the bone thread you will find lots of help on here.

I am not familiar with anastrozole or arimidex I am no longer on hormone tablets as they do not work for me anymore. But I am sure someone will be along to chat with you about it. Don't be alarmed if your chemo did not work first time it happens but if your new treatment holds or reduces the blighters then it will be a good thing only time will tell. But if they stop working there will be lots of other treatments to fight them.

Sending you cyber hugs and love xxx

scratch
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Hi typing errors meant I have lost my zing..keep hitting wrong letters.xx
scratch
Member

Re: Bone mets - please join in

Yes Caroline we must be grateful for what we can do..but its still frustrating I have no strength.not used to having some one doing stuff for me.always been independent.. can still drive u have an automatic car. And u have lost my zing some time s it comes back to me for little while...heyho ❤😁 x
Marirose
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Dear FF I have sent you a pm x

scratch
Member

Re: Bone mets - please join in

Hu anek4cat ..everyone's treatment fail sometimes that's why people change their meds.i was told by hospital Dr..that hormones tablets do exactly the same as chemo but work slower so maybe they're giving you a break from harsh stuff. Take care Sharon.x
julzd
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Hi eliliy here's me thinking it's a new invention lol x x x
Elily
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I had a wool duvet when I went to university back in the 70s - so nothing new! Any duvet made of natural fibres: wool, silk, feather, down, is cooler and more breathable than polyester. We have a lovely 4.5 tog Hungarian goose down quilt (and a super king bed) so are generally OK using it on all but the coldest and hottest days of the year.

 

I am lying around at home "resting" as my platelet level was too low for chemo last Friday. Hoping a good rest from commuting will help. 

julzd
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Re: Bone mets - please join in

I hadn't heard of them either carolyn but apparently they're great. I spoke to my bcn today about the acupuncture the oncologist suggested for hot flushes it's free it's ran by the coping with cancer charity so have a look if you have one but the needles go in your ear so that's put me off a bit lol x x
Carolyn52
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Re: Bone mets - please join in

Hiya jultz
Don't know what I would do without argos ( its five minutes from my house) but I must confess I haven't really heard of wool duvets so anything that keeps you cool is worth its money. I do feel sorry ( well a bit) for our hubbys ..open Windows at night, duvets going up in the air and all our huffing and puffing !!
Hugs xx
Carolyn52
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Re: Bone mets - please join in

Hiya angelcat
Welcome. You have come to the right place for support and advice.
Unfortunately i dont have the right answers for you but there will b ladies reading that will post you some replies no doubt.
I'm sorry you have been through the savage chemo treatment and had no success but I'm sure your oncologist will be replanning the next stage ..tailored to your Mets etc.
In the meantime ..stay with us here we do have a bit of a laugh sometimes .we also have a secondary private forum which you can join. We have a book club, photo gallery , games and various threads there to help you through this ordeal.
Hugs xx
julzd
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Hi carolyn bought my wool pillow today get the quilt tomorrow I shall keep you informed if it works and keeps me cool I actually got it from argos x x
Angel4cat
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Hi everyone I'm new to this group but reading the threads for a while. I was dx with BC sept 15 mast followed. Had 2 chemo then ct scan dx with bone mets in jan changed chemo had another 5 just had another ct scan more bone mets and liver mets. The chemo didn't work! Now on anastrozole to see if that will slow it down. Has anybody had first lot of chemo not work?

Sue 

scoobiesue
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Thanks Carolyn.I thank god every day for the quality of life that I still have. Relatively mobile. Although I don't walk too far these days. You should have loaned me your husband for the weekend. We could have gone wild among the plants. Mine is a superstar carried all my purchases and pretended he was loving it. Sue. xxx

 

Carolyn52
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Sue . you are not alone ..I seem to have lost confidence when Im out too. Its probably as we are not 100% mobile and not independant.

I used to be so active and confident in going swimming on my own etc etc . I hate having to rely on hubby to do so much around the house that I always used to do. Always did the decorating , heavy diy stuff without any problem !! I cant drive either and as I have been driving since 1970 its really quite a loss. 

Never mind we must be content that we still have some quality of life to do simple things. 

 

Hugs xxxxxxxxxxxxxx

 

scoobiesue
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Hello ladies. Gorgeous day in the NE. Just back from a long weekend at the Malvern flower show.  I loved it. Before I went I felt sick with anxiety. This for someone who was responsible for the care of 1000 plus students. Why has this wretched diisease made me loose confidence? Determined to get the old me back. Well some of me anyway. Love to all. Hope all scan results are good. Sue xxx

scoobiesue
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Funny face. You and your brother are in my thoughts and prayers.I would hope his family appreciate how difficult it has been for you too. You can remember him in your own way. Sue xxx

Carolyn52
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Re: Bone mets - please join in

My oncologist leaves at the end of May too and I feel like I have been in safe hands. I meet my new one in June . 

Just go with your instincts if you are still  getting the side effects. Maybe ask about the injection which is a lot quicker and less side effects maybe. Although I do get aches and pains for a few days but never quite sure if its the injection or the mets really.    

KazMOr
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Re: Bone mets - please join in

Hi Carolyn,

I had the same thought this morning so decided to contact my BCN and contact oncologist to ask if these side effects were normal.

I have now just been told that my Oncologist has left. I am devastated. She was so wonderful and now I have to meet a new one. I hate change!!

My BCN does seem to think that the tingling and numbness is from the zometa but if it gets worse has told me to go straight to A&E due to where my bone mets are on my spine, very close to spinal chord.

Karen x

Carolyn52
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Re: Bone mets - please join in

Karen.
Zometa seems to have a whole lot of side effects. Now as u all know I'm rubbish with medical stuff but most of us have the injection denosubam so not sure why you have infusion bone strentheners ? Maybe you could ask when u see oncologist .
Hugs xx
scratch
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Oh funny face of course you will get stressed.you will be going through your thoughts about your brother.try to keep the good ones.if you cant go to the funeral just do a private candle for him at home...thinking of you..sharon.❤ x
scratch
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Hi kazmor prob side effects.everything has side effects..see if it happens again next time.sharon.xx
rosie53
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Oh funnyface what terrible news, so sorry for you!  But as Carolyn has said you need to take care of yourself. 

Life throws some rubbish things at us sometimes but it's how we deal with it that matters and stress does play a massive part in our wellbeing! Take care sending you lots of cyber hugs  ((()))

Hope everyone is okay, it's another gorgeous day here in Manchester. 

Hugs Janette xxxx 

Carolyn52
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Hiya funny face.
Just switched on my phone ..so sorry to hear that sort of news .
Look after yourself though as stress is not good for you ..your brother made a choice but you have to keep strong for your health.
Hugs and kisses xxxx
julzd
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Funny face that's awful sorry to hear that take care Julie x x x
julzd
Member

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Hi smelliedog thanks for replying I'm going to get one and give it a try. X x
funnyface
Community Champion

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Girls I will be back in a few days! Having a very tough time! My brother committed suicide yesterday. So many mixed emotions! The hardest part is he has been a mess for many years and wouldn't speak to me, but he is still my brother. I also don't know if his wife will allow me to attend his funeral. I feel bad for his kids they are all young adults, but he has put them through h**l! FF

smelliedog
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I've just recently bought a low tog wool duvet and I've found it brilliant. I no longer keep waking up bathed in sweat and it's so light. I bought a wool pillow too.

KazMOr
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Hi Ladies,

I hope you have all been enjoying the lovely weather this weekend.

As you all know I started my Zometa infusions just over a week ago.

And I am getting some tingly and numb sensations in my hands and some lightheadedness.

Has anyone else suffered with these issues after bone infusions??

I was feeling really well before I had the infusion, now i feel crappy, which is very frustrating.

Any advice ladies??

Hugs to everyone

Karen x x 

scratch
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Hu jultz its a lovely feeling to walk out without a hat.and feel the air going through your hair...sharon.x
Carolyn52
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No haven't heard about wool quilts but sounds good. I love my feather duvet as it sort of hugs me but in a cool way. I have a very low tog... and then a throw in case it gets cold.  Always have the window open a little bit too.

Will be looking forward to hearing about your shampoo results. You will in the grand national next year with all that hair flowing....... 

I've just bought simple shampoo for my thinning hair but saw an advert on tv for regains which is for hair loss which I might try. 

My sons dog had a leg op but it wouldn't heal.. vet prescribed manucur honey  (spelling wrong) and it cleared up within a few days. Might help ladies with skin Mets or Rad Burns.maybe vets know best!!! 

julzd
Member

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It's called mane and tail shampoo look it up on amazon has great reviews I'm going to try it x x