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Bone mets - please join in

Tinkerbelle
Member

Re: Bone mets - please join in

Hi Helen,

 

So glad you're doing well.  Yes, the drain's a pain, but so much better once it's out.  You should write a

book about your hospital!

 

Love and hugs

 

Tink x

2catlady
Member

Re: Bone mets - please join in

Hi,lovely ladies,thank you for your kind words they mean such a lot to me. I have my drain on ribbon around my neck like some goolish necklace lol. Got sick of putting it down and walking off without it lol hoping it will be out tomorrow.
Take care lovely ladies and huge hugs to you all,Helen xxxxxxxxxxxxxxxx
Bevlaar
Member

Re: Bone mets - please join in

Hi Helen..welcome home lovely lady! What a time youve had of it in hospital! Never mind youre back in the comfort of your own home now. Hope you are back to your normal self soon, drains are a real pain but  at least it won't be in long.

take care of yourself ♥

Love Bev xxxx

roxy12
Member

Re: Bone mets - please join in

Glad you are home now Helen. Take things easy and pamper yourself. Love Sheila. Xx

Chocolates
Member

Re: Bone mets - please join in

Julie have a fab break - you totally deserve it. I won't be on live chat this week as I have onc appt. if back earlier enough I may check in but highly unlikely. I mean it Julie - enjoy your break.

Huge hugs everyone xxxxxxxx
JulieD
Community Champion

Re: Bone mets - please join in

OMG! Poor you! Thank goodness you are home now, I'm pleased to hear you are managing - the drain is a real pain in the bum isn't it.
Mavis that was sweet of you, thank you also for lighting one for us all the other day. You did make me laugh about your husband taking his hearing aides out! Hope you are doing ok.
Good luck for Tuesday Liz.
They say we should have a settled week weather wise so hope you allmanage to get a bit of sunshine at some point.
I'm off to the West Country for a few days so hoping it will stay dry. Chocolates, I won't be able to access Live Chat whilst away but will be thinking of you all, please say hi and give the others my love.
Take care lovely ladies xxxx
Chocolates
Member

Re: Bone mets - please join in

Hi Helen, so relieved to hear from you and glad you're home. Your experience sounds dreadful but unfortunately some people just can't help themselves can they. I had a drain after lymph node removal and constantly forgot about it, tripped over it and dragged it round so I know what you mean. Each time of course it pulled at the stitch so you'd think I would have learnt but no -it happened at least 10 times everyday!!!! Hopefully it'll be out soon. Rest up now and take it easy for a while. You're such a star and I'm sending you huge hugs xxxxxx

Mavis, I too became very constipated on treatment so saw gp for tablets to keep me regular. I found that by taking them the day before started steroids it helped me through. However definitely mention it at your next appointment. I also have lung and bone mets. I have a port in though which is easier I think than a picc line but if you only need it for this lot of chemo I would say stay with the picc. However quiz your onc about what you will need over time. If they are going to access your veins every month for at least a year then I would ask for a port. A port is under your skin so don't have to keep dry etc and is generally less prone to infections too. But like I said talk it through with your team.

I had a lovely trip to the theatre today in Central London with my friend. It was fab but very hot!! To top it all I ran for the train after and didn't feel too bad afterwards. Hopefully sign of herceptin, perjeta doing it's job and keeping me stable.

Huge hugs everyone.

Hxxx
Desi-2
Member

Re: Bone mets - please join in

Hi Helen been thinking of you today I'm glad your home and sense of humour in tact. You certainly go through it with your hospital. Much love and hope you heal quickly xx
2catlady
Member

Re: Bone mets - please join in

Oh,Mavis,that's so lovely thank you very much. Huge hugs,Helen xxxxxx
sivam
Member

Re: Bone mets - please join in

sivam
Member

Re: Bone mets - please join in

Helen so glad you are home, your ward description was so funny, a candle will burn for you in the chapel.I am on last day of Steroids will be so glad to be able to sleep, I feel like I maybe on a "trip" cant stop talking ,moving around but nothing concrete is getting done. Rib pain is back, now only on Paracetamol and bad Constipation so can't take Codeine.But amazingly after 4 days since DX  am now in my mind going from Panic to Peace, Meditation is helping and this thread is invaluable.I also apparently have some problems with the Lungs, did'nt soak that info up much last week so will know more on Wednesday when I see Onc, before I am zapped again. I have asked for a PICC line but not heard when that will be, am I doing the right thing re PICC?

Do I use the lung thread to research that aspect of my condition?

Lots of questions still lurking from this Steroid fuelled old woman. Love and Light xxMavis

2catlady
Member

Re: Bone mets - please join in

Hi,lovely ladies,just wanted to say hi & I'm doing okay. I'm glad I had it done even though I'm feeling a bit rough. Drain is driving me around the twist.
Hospital was awful no privacy. I had a bit of a melt down on ward after no sleep and a lot of pain and the old ladies on my ward must have though because I had curtains around me I suddenly became deaf. One asked the other why I was crying and other one said "oh she's got cancer and I heard her telling pain management doctor it's spread to bones" Then the other old dear responded by saying "oh she's dying then!! "Another one asks whose dying and old dear said the girl with the curtains around her!!
I wanted to shout I can hear you behind here. So spent another night crying with no sleep. I had clothes on at 4:00am and told doctor I was leaving hospital that day regardless of how I felt. I was home by 11:00am .
But apart from that I'm back to my old self and glad to be home,just resting and pottering about.
I hope all you lovely ladies are doing okay,I'm sending you all massive hugs,Helen xxxxxxxxxxx
roxy12
Member

Re: Bone mets - please join in

Hi Liz, sorry to hear that faslodex didn't work for you. I know you must be really disappointed. I hope the rads give you some relief and the next treatment works great!

Love Sheila xx

pam01
Member

Re: Bone mets - please join in

Liz..sorry to ear your news but glad to hear your team are on the ball. Good luck with the rads......maybe you will become one of the capecitabine girls?...you have done so well for so long on hormone treatment...best wishes. Pamxx

lizcat
Member

Re: Bone mets - please join in

Well, I'm off the faslodex already. It seemed to give me stiffness, aches etc and reduce mobility. Had an urgent scan and there are more deposits all down my spine which aren't helping. Oncologists are on the ball though and immediately booked me in for rads planning next Tues. They will look at areas needing attention and which bits have been done before and take it from there. After that, it will be another look at hormone therapy or possibly chemo if I am fit enough. Bit of a set back but have to get on with it and hope there will be some gradual improvement!

 

Liz

Chocolates
Member

Re: Bone mets - please join in

Mavis that's a lovely thought and means a lot. Thank you xxx
sivam
Member

Re: Bone mets - please join in

Thankyou Julie and chocolates, still manic on steroids last dose tomorrow, cant settle and got verbal diarrhea, OH taken his hearing aids out, poor love.I have visited the Dark wood thread and lit a candle for you all in the virtual chapel that is still in the wood .http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=ddw

JulieD
Community Champion

Re: Bone mets - please join in

Hi Mavis.
Glad your treatment has started and hope SE's will be manageable. I agree with Chocolates, listen to your body and rest when you need to. You will be glad you've done batches you can eat from frezzer when you are feeling tired.Let us know how your results are next week and remember we're always here for you xx
Chocolates
Member

Re: Bone mets - please join in

Hi Mavis - I'm glad the first one is over and so far you are feeling relatively ok. Remember to listen to your body and once finished steroids you might need to rest a bit more for a few days. At least the batch cooking is keeping you occupied. Hope you continue to feel well and the chemo is not too difficult to manage. If you get any side effects the. Make sure you speak to your onc.

Huge hugs,

Hxxxx
sivam
Member

Re: Bone mets - please join in

Femara is the Novartis drug given to me at DX for only 3 months, I have tried over the last 3 years 14 different companies making Letrozole and the only one that suited me was the Mylan Brand which I took for a year and now lo and behold they are having problems with production and is not expected to be in operation for another year.this brand does not contain Talc all the other brands including Femara do.Teva ,Sun and Sandoz seem to be the general Letrozole prescribed.I have all this to-ing and fro-ing to thank for my secondary diagnosis, Angel of a BC nurse told me to drop Letrozole for a week and sent for CT Scan and found a result??Have now been taken from Letrozole and may be given other type after Chemo,somewhat worried because Letrozole the gold standard drug or should that be Femara?I n the early stages of Femara I took a supplement called DIM (concentrated broccoli) this became quite expensive so grew broccoli sprouts and ate brocolli soup, dont know wether it worked but was willing to give it a try.

Wow so many names are so familiar on this thread and a great many of them in the past was about joint pains from Letrozole, if only those drug companies would read these threads, instead of sending out silly forms which I am sure no one ever reads. So sorry these Steroids are making me Rant I am such a gentle old Granny honest xxLove and Light xxMavis

sivam
Member

Re: Bone mets - please join in

Thank you all for my lovely welcome, into now not so scary a place.

Had my 1st Chemo yesterday Taxol and demusimab injection, all went very well needle in 1st time but asked if I could be referred for a  PICC line for the next 11? treatments. Did I do the right thing?heard scary stories of line infection but the thought of those poor nurses trying to locate a vein fills me with horror.Of course I am "high" on steroids and anti sickness today, so a fair bit of batch cooking done. Unfortunate planning but my house is occupied by painters, with a penchant for strong tea and scones "often".this glorious  weather has them now working outside so I dont feel so trapped.

Several ladies in the chemo unit informed me that I would not feel as bad on this weekly Taxol as I felt on my 3 weekly doses of Taxotere and Cyclophos after my Mastectomy 3 years ago, I do hope that is so.

Feeling good at the moment will get more news of MRI  and leg XRays next week from Oncologist thankyou all again for letting me in, the info on here is so great.Love and Light Mavis xx

Desi-2
Member

Re: Bone mets - please join in

Oops good job you picked up on my mistake there Janette!
rosie53
Member

Re: Bone mets - please join in

Hi, just want to say about the Femara/Letrozole drug
Femara is the brand name and Letrozole is the generic, if you want Femera you must ask your doctor to put it as that on the prescription as the the pharmacy will only give what is on the prescription as Femara is alot more expensive!!!
Hope this helps
love Janette x x
Chocolates
Member

Re: Bone mets - please join in

Hi helen44 - I have a power port for my herceptin etc and it's amazing. I can also have my ct scan dye pumped through it as well. My veins are dreadful so would def recommend. Especially as this will hopefully keep you stable for a long time.

Huge hugs,
Hxxx
vercors
Member

Re: Bone mets - please join in

HI ladies, 

I haven't been posting for a while, but I have been reading all your posts. Welcome to the new ladies

 

Helen, 

Some ladies like Tracy do have different side effects according to brands, I have not noticed anything.

I have been on letrozole and herceptin for over two years without any side effects. When I was on tamoxifen I started taking glucosamine for joint pain and I did not stop when I was switched to letrozole upon secondary diagnosis. I have been fine ever since. 

Being secondary lady, you will be on herceptin for the long run. I sugges you ask for a portacath to be fitted so that you save your veins. A portacath is subcutaneous, so it does not show, you can shower, go to the swimming pool; well worth it. 

If you are lucky, you could get a power one, which can be used to inject the contrast for scan. I wish I had one of those. They stabbed me 9 times before they could canulate me... 

 

Take care. 

 

Desi-2
Member

Re: Bone mets - please join in

Thanks for the info Helen. My tip for Letrozole would be to ask for the Generic form called Femara it's very expensive so not generally given out unless you specifically ask but I found the side effects of achey stiff joints much less than when I took the cheaper brands. Lovely and sunny down south here too at the moment long may it last 😊
Best wishes
Tracy xxx
helen44
Member

Re: Bone mets - please join in

Hi Desi-2

Had a long onc appointment this morning the upshot of it being that after 3 weeks of analysis I am informed that the removed tumour from above the sternum has changed receptors to HER2+. It is not a bone met but a local recurrence and my bone mets are currently stable. They are starting me on herceptin on 24 June, changing tamoxifen to letrozole, and continuing with zoladex & denosumab. Oh and I am having 5 days of radiotherapy next week on the chest area from whence the new tumour was removed! All good fun!

Any hints on coping with herceptin & letrozole would be gratefully received!

Hope everyone is coping at the moment.

At least the sun is out......

Love Helen x

Chocolates
Member

Re: Bone mets - please join in

Hi Sivam, welcome to the thread and group but so sorry you have to join us. You are the same age as my mum. You're doing so well to cope with all the awful treatments they are throwing at you. We're all friendly on here so would love to hear from you and hope we can help.

Hi Helen, I read that article too. I found it frustrating that it didn't say what type of cancer she had. As for giving up dairy - I would try but it would be sooooo difficult?!!!

Hi Helen (2catlady) I hope all went well today and look forward to hearing from you soon.

Love and big hugs to everyone.

Hxxxx
Desi-2
Member

Re: Bone mets - please join in

Hi sivam just wanted to say welcome xx

Hope all went well Helen and your not too sore today xx

Hi Helen 44 could I ask how they know you're on the change to her+? Xxx
helen44
Member

Re: Bone mets - please join in

Hi everyone,

Hope treatment is going well. I am waiting to see onc tomorrow after recently having had a bone met removed from the area above my sternum. Apparently I am on the cusp of changing from HER2- to + so we will see what tomorrow brings.....

 

I saw this article in the Telegraph last week - it makes interesting reading

http://www.telegraph.co.uk/foodanddrink/healthyeating/10868428/Give-up-dairy-products-to-beat-cancer...

 

Hope your operation went well Helen (2catlady).

BIg hugs, Helen x

JulieD
Community Champion

Re: Bone mets - please join in

Hi Sivam just wanted to say a quick 'welome'. Don't be shy ask anything you want, often I think we don't ask things coz we think they are stupid questions but not here, if you have a question or worry just let us know.

Maldives good luck with your appt this week hope you get some answers and a plan of action. Thinking of you.

Helen, hope op went well and you are now recovering, take thinga easy and when you are up o it let us know how you are doing, in my thoughts and prayers.

Lulu sorry you've landed up in hospital, was the diabetes caused by steroid or othe treatments? Hope you are feeling much better and can get back home real soon.

Have as good a week as podsible everyone xx

2catlady
Member

Re: Bone mets - please join in

Hi,sue and lovely ladies,thank you xxxxx just been on ward for anti blood clotting injection,oh god it hurt !asked for a cubicle room but they said all in use. Don't fancy being on a general surgery ward,with none mastectomy ladies and men!!but it will all be over tomorrow. Biggest laugh when I went for my bone juice I asked about my tumour markers and they are down,go figure !!! Lol

Hi,Chris,hope you are doing okay,sending you huge hugsxxxxxx

Hi,Mavis,sorry you had to join us,but we are a friendly bunch &always glad to help.so come into our midst xxxxHelen xx

Huge hugs to all the lovely ladies on here,thank you for all your kind wishes & thoughts,hopefully will catch up with you all soon,keep kicking C butt & stay strong xxxxxxxxxxx
sivam
Member

Re: Bone mets - please join in

Hi Everyone,been lurking on this thread for a few days,plucking up courage to jump in for help.I was DX in 2011 on my 77th birthday, Mastectomy chemo radiotherapy,Letrozole. Now 80th bday,pain in ribs and spine,somewhat breathless.Now DX bone mets plus slight lung mets,start chemo next Wed,Taxol and Denusamab,not looking forward to hair loss again.not posted on this new type of forum 2yrs ago I posted on "chemo august 2011" also visited the dark dark woods regularly,especially the chapel in the woods.I avoided this thread like the plague, now I am haunting the bone secondaries for help and encouragement.Please please can I come into your midst Love and Light xx Mavis

Maldives
Member

Re: Bone mets - please join in

Hi Ladies,

 

Good luck next week helen, sending you love and huggs, I will be thinking of you.

 

Chris, sending you love and huggs too, I cn'at imagine what you ladies are going through as I am only strarting my journey with this horrible disease.

 

You are both srong ladies who have been a valuable support to us newbies, in a difficult and scarey time.

 

I have my appointment next week with the oncologist so I will know just how far this has spread and will have some sort of plan, I am sailing in the wind at the moment.

 

sending love and huggs to all you ladies, thank you so much for being there for me.

 

sue xxxxxx

LYNDYLOO
Member

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Morning Helen

 

Good luck with your operation.  Are you still at the same hospital as before.? I am just waiting for a date for redoing the reconstruction which I was not happy with.  Been for pre op assessment on 30 May.  Could have been in Saturday gone but I am still on everolimus which can cause problems with healing.  Rang oncolgist last Thursday she said I would have to be off it for a month after surgery but not before.  I don't think waiting list is too long.  Will let you know if the plastic surgeon does a better job than the breast surgeon who is also trained in plastic surgery. Take care. Linda

2catlady
Member

Re: Bone mets - please join in

Hi,lulu,thanks,I asked about scan as it has been a year and obviously I've had progression in the breast and he said he will "talk" about that when we get results back from new tumours as he thinks they will be a different status to originals. I did say well if it's grown in primary and huge new tumours in 8 weeks surely it's grown in bone mets & god knows where else . He said let's get this mastectomy sorted first.
Tuesday can't come fast enough as breast looks like something from alien movie at the moment. God I never knew tumours grow that fast!
I have pre opp assessment on Monday and zometa so glad I've got three weeks before next bone juice!
Huge hugs,Helen xxx

I hope all the lovely ladies are doing well,Chris hope you are okay.
Sending huge hugs to you all,Helen xxxxxxxxxx
Lulu34
Member

Re: Bone mets - please join in

Helen so pleased your surgeon is looking after you..... Have you asked him about getting your CT..... Very often they would wanna CT first before surgery.... But would maybe say after yr op.... That you hvnt had a CT for ages and your worried your being missed out.... I would also be considering going further afield for a second opinion rather than putting up with the poor treatment closer to home.... Even though its a major pain... Also PALS involvement.... It wont do any harm!

Chris so sorry to read of your progression and really gutted for you..... i know some of the chat girls are on erubulin with good effects hoping its the same for you hunny xxxxx
Tinkerbelle
Member

Re: Bone mets - please join in

Chris,

 

Hope eribulin kicks some butt.  When you're in the sink it can seem like you'll never climb out, but hopefully, day by day a bit of brightness returns.  As Belinda says, be kind to yourself and we're all thinking of you and sending comforting thoughts.

 

Tink x

belinda
Member

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Dear Chris, another very sorry to hear your news. It's so hard to pick yourself up at times like these. But be especially kind to yourself and I hope Eribulin works really well for you. X
Good Luck with your op Helen. X
Smartie
Member

Re: Bone mets - please join in

Helen, great news on at last having a date, good luck with the op and the treatment following.

Chris sorry to hear you are having a difficult time. At the end of last year I felt really ill and had progression only a few months after IV chemo, I too cancelled loads of things and felt I wouldn't be able to book any holidays etc. with any certainty, however here I am some months on feeling much improved on Capecitabine which was doing its job at the last scan and am off to France for a holiday next week. Had latest scan last Friday and get results this afternoon so a bit nervous and hoping the Cape is still working (fingers & toes crossed). I hope you get some pain relief from the rads and that the new treatment is effective for you.
Sending love to all.
Smartie x

nicky08
Community Champion

Re: Bone mets - please join in

Hi Helen, thank goodness you have found someone who gives you confidence and that the op is planned for. Scary when you get a date so quickly but by this time next week it will be done with and you can start on the next step of getting your treatment sorted.
Chris (steris) - so sorry to hear you've been having such a rough time. Last year I had such a bad time and didn't feel it would/could get any better. Had to cancel loads of things, just like you have, which just seems to add to the burden and bring it all home. However I do feel so much better than I did and I'm hoping that the new chemo you are going on will help you, as well as getting pain relief from the rads. Good luck and keep on here for the support especially when you're feeling so low. Sending you some hugs.
Nicky xx

MaraUk
Member

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So glad your finally getting your op I was lucky to get mine in before the dx to mets it will be such a relief xx
2catlady
Member

Re: Bone mets - please join in

Hi,Madge & Tink, thank you. Huge hugs to you both,Helen xxxxxxxxxxxx
Hi,Madge,hopefully it will not be long for you too xxxxxxxxx
Tinkerbelle
Member

Re: Bone mets - please join in

Yay Helen,

 

That's great news.  I'll be thinking of you next Tuesday.  You'll be done and dusted before you know it!

 

Have a great week of spoiling yourself and let others spoil you too ((((Helen)))).

 

Tink x

madge1
Member

Re: Bone mets - please join in

Hi Helen, at long last you're getting the surgery that you wanted!!!! Great news and wishing you all the best for next week, will be thinking of you!!!! Just hope my tumour and lymph nodes shrink enough for me to have surgery!!! The capecitabine is doing it's job!!!

Hi Chris, sorry to hear your news, wishing you all the best xxx
2catlady
Member

Re: Bone mets - please join in

Hi,ladies,thank you xxxxxxxx just glad to get rid of at least the mother ship. And praying her "babies" behave for a long time.
Hugs to you both & hope you are all keeping well,Helen xxxxxxxxx
Lynnq
Member

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So pleased that you have a date, and a near one at that. Best Wishes for Tuesday. Xx
Desi-2
Member

Re: Bone mets - please join in

Hi Helen that's great that you don't have to wait long. Roll on next Tuesday!
Love Tracy xxx
2catlady
Member

Re: Bone mets - please join in

Hi,Janette,thank you. You will get your bloods done regularly ,I get mine done every 3weeks before I have bone juice. It's to make sure all your bits are working properly ( not very technical ) it tests to see if you're anaemic ,liver function,kidneys ,calcium to name but a few. Don't worry about it it's a good way to keep an eye on you.
Cake was lovely,thanks.
Huge hugs,Helen xxxxx
rosie53
Member

Re: Bone mets - please join in

Hi Helen, just want to wish you good luck for your op next week, been reading your posts and so sorry you have had such a rough ride with things, i dont really post much on the forum but i do read what you ladies write and it has really helped me as im quite new the secondary dx gang!!!

i have my first denosumab next week and have just received letter telling me to have bloods done 2 days before hand and a pathology form with "pre-chemo bloods" wrote on it?? does anyone know what that means? i thought it was a bone stregnthener??

Hope you enjoyed that cake Helen you take love Janette xxx