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Bone mets - please join in

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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

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

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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
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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
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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

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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

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

 

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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
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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

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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
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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
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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

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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

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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
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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

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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

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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

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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
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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
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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

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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
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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

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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

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

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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
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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
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So pleased that you have a date, and a near one at that. Best Wishes for Tuesday. Xx
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Hi Helen that's great that you don't have to wait long. Roll on next Tuesday!
Love Tracy xxx
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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
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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

 

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Great news Helen - I have been thinking of you today. Enjoy the next few days and good luck for Tuesday - heres hoping that everything will be on its way up for you from now  you deserve it!x

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Hi,thank you ladies,I will,just had a huge piece of cake for a treat! No double,but I'm happy with what I've got at the moment. Just packed bag so I'm all ready to go lol
Massive hugs to you both,Helen xxxxxx
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That's great news Helen. Glad he seems a nice person too. Makes a change for you to have someone you can get on with! My onc looks really young too but if your surgeon is a nice as he is you will be OK. Not long to wait either so as chocolates says, spoil yourself this week.😊 love Sheila. Xx

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Oh Helen that quick? That's fantastic news. Now concentrate on having a few nice days before next week. So so pleased for you - not a double mx then? Was that too much to ask?

Huge hugs,

Hxxxx
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Hi,lovely ladies,just to let you know I'm going in for my mastectomy on next Tuesday . It's taken a year to get one but at long last it's here,yikes!
Surgeon lovely man ( looked only 15!!though lol) glad I'm doing it as watching tumour grow on breast is awful.
Sending you massive hugs,Helen xxxxxxxxxxxxxx
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Hi Helen, just wishing you good luck for today. You never know you might get a good outcome!! Will be interesting to see if you've been labelled a trouble maker after speaking out on Monday.

Huge hugs,
Hxxx
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Hi chris, so sorry to hear of recent progression. I hope a treatment plan is sorted soon so you can get on with things and feel more settled.

Huge hugs,
Hxxx
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Hello Chris so sorry you've had progression, it certainly sounds like you a lot to cope with at the moment. Hope you start to feel better soon.

Tracy xxxx
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Hi Chris,

Sorry things aren't good at the moment. I know how you feel as I had been running pretty smoothly until last Dec when on top of my lung and bone Mets I had progression to the liver. I have since had taxotere and am waiting for a scan in two weeks to see what things are like now. My scan halfway through treatment showed some shrinkage to the liver tumours so I am hoping they are smaller still now! I certainly feel better than I did in Dec and Jan.

Hope you have good results from eribulin without any side effects.

Take care. Love Sheila. Xx

 

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Hi Chris,

 

Sorry to hear that you've not been well lately.  The ladies on secondary live chat tonight will be there to support you if you can join us later.

 

Take care

Jo, Moderator

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Hi,Chris,so sorry to hear you not doing to well. Hopefully the rads will help with pain. No,this C never gives you a break,when you think things are doing okay it kicks you down. You are a strong woman so
Hang in there and the Eribulin will kick it's butt. We are all here for you Chris xxxxxx
Sending you massive hugs,Helen xxxxxxx
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Hi Ladies,

 

I haven't been on for a while and I've not been too good.  The MRI scan shown that there is progression to S1 and L2, I also have progression to the pleural, tumour in my lung has grown, there is a large lypnme node pressing on my neck and that I now have liver mets.  Im in a sink at the moment and don't really know which way to turn.

My oncologist has arranged Radiotherapy for S1 and L2 which was a heavy dose that made me very sick for a couple of days.  The pain has been pretty horrendous but I have got my doses about right now and using ibrufen and paracetamol which is helping.  I start eribulin in the 16th and have had to cancel so many things which hasnt helped my mood.

Im just trying to take one day at a time and hope that when I get through the worst of the fatigue I'll start to pick up again.

 

Life is never easy is it?  I really hope you are alll doing as well as you can be.

 

Love

Chris xxx

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Hi Helen, I've also been away so have only just caught up on posts. At long last someone seems to be doing something but I can't believe they have taken this long, grrrr.  Hoping you do get a surgery date asap so this part of your treatment can get going and you'll have more idea of what other treatment is needed.  My secondaries have changed from being only hormone positive to now being ER, PR and HER+ so it can happen. Strangely my oncologist (when I found out from a biopsy last year) was more surprised than I was that this can happen, duh. I recommended he read this forum!  Thinking of you as you wait for yet more appointments and well done for eventually getting your PIP (do we really have to fight for this all the time?) and for telling the BCN how badly you have been treated or in fact ignored.

Mileytom - don't beat yourself up for not having chemo first time around, I was exactly the same. Grade 1, no nodes, 90+% chance of a ten year survival and wham, got my secondary dx nearly 5 years afterwards.  Well, I suppose they got the 90+% bit right as I'm still here, but.....

Thankfully these forums again helped so much and reading them made me realise that it would have come back anyway whether I had chemo or not for my primary. I had chemo for my bone mets in 2008 and this kept them stable for 5 years, along with follow on hormone therapy until last year when I had spread to my liver.  However since starting Capecitabine (Xeloda)  last Feb everything again has been stable.  Just waiting (quite literally) for my next CT scan to see how things are going.  I'd also add that if you are coping Ok with the chemo I would do the 18 weeks (as thats the usual amount of time for 3 weekly chemo regimes anyway) and really hit the uggers with all that you can Smiley Happy

Hi to all other boney ladies, hope the treatments are working well and side effects minimal.

Nicky x

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Hi,Sheila ,Lynne &Julie,thank you xxxxx yes,I thought when they did ultrasound they would have biopsies but apparently they only biopsy a couple so it sort of makes sense with my markers going up for a year that something else was going on. But again no one listens ! Now I'm having surgery they will biopsy all tumours,a bit late now !! Even if they had given me a CT scan in the last year that would have shown them something was up.
Oh well ,there's nothing I can do now but pray it hasn't decided to have a party everywhere else while they have been faffing about.
Huge hugs to you ,Helen xxxxxx

Huge hugs to all the wonderful ladies on here too xxxxxxxxxx