Bone mets - please join in

[rosie53]

Thank you Sue, it looks like they only do it in drastic cases??? Really struggling this evening with pain  (don't remember it ever being this bad) I don't understand, if I'm responding to letrozole then why is the pain getting worse?  I haven't had a bone scan now for 12 month my onc said guidelines says they are not needed and that CT scans pick up just as much?  I really don't know? 

Janette xxxx 

[scoobiesue]

Hi Janette. I will tell you my story. Please don't jump ahead your femur may never be in the same sorry state as mine. I had lots of pain and was almost dragging my leg. After lots of physio and a range of other treatments I evtually requested an MRI. Before the results were read I had a bad fall and the  femur snapped. This resulted in the operation to pin the femur. This was March 2015. I recovered really well and was driving again.I had radiotheraphy once on the diseased bone. On the 30 Dec I suddenly was unable to put any weight on the leg. Trip to A&E revealed that the pins had snapped. It was decided that I required a complete hip replacement with a long pin. Apparently this was a messy and complex op and I was transferred to another hospital under the care of a consultant with experience. Been home now 3 weeks and walking with ease on two sticks. No real pain just chronic anemia.I am hopeful that I will walk freely again . Hope this helps. Ask me more if you can bear my rambles.

Hugs to you. Being in constant pain is so wearing. Sue xxx

[rosie53]

Hi Scoobiesue, can I pick your brain about you having a hip replacement and getting your femour pinned please. I am having a lot more pain these days in my left hip / leg, I have had some rads in that area around 18 months ago which made the pain more or less disappear which was great, but unfortunately it started up again around September last year, my onc has changed my treatment from tamoxifen to letrozole in Oct last year although my latest CT came back stable and my markers are coming down the pain is no better!  I had an x-ray on Thursday so she could look at my hip and has said it may need pinning but thinks it's unlikely as she would expect me to be in more pain than I explained to her she just said it's because you have cancer there and because it's a weight bearing area that's why I have more pain there! ! My husband asked her if i could have an hip replacement if things got really bad and she said no??? Just feel like I just have to sit and suffer!!!!

Any info/advice would be welcomed hugs Janette xxxx 

[julzd]

Thank-you Ann 😃 X X 

[Anneemay]

So pleased to hear of your good news, look after yourself and be kind to yourself. Best wishes Ann xx

[julzd]

Thanks Helen 😁 I'm going to ask if I can keep it see what he says and take it from there I'm looking forward to getting off chemo it's been tough and I've had no hair since May last year forgot what it's like lol . 

Hope you have a lovely holiday ❤ I'm looking forward to getting back to work just going back part time it's amazing how one good scan result can lift you up 😊  X X X 

[scratch]

Jultz.i really dont know what you should do.but right now enjoy your good moment🎶

[Anneemay]

Hi JulieD  I was also the first to be dx. and the 2nd eldest, my younger sisters then have all been dx 3 of which have completed treatment and the sister who is still on treatment is a identical twin. So far my eldest sister remains clear. We did have have genetic testing done at Guys a few years ago but they were unable to find a genetic link. However my sister who lives in Germany was found to have the Chek2 gene which is related to breast cancer somehow and at the moment I can not recall how. Her youngest daughter also has been tested and also has this gene so is being screened annually. We did give this info. to Guys but they apparently did not test for that gene then I don't know if this has changed now. My sisters oncologist who is the same as mine as now advised us to consider contacting Guys again in view of her dx to explore whether there is a genetic link again. I am 63 now, dx when 49 and all of my sisters apart from the 1 receiving treatment now we're dx in there late 30's or early 40's, Guys informed us initially that our bc were either coincidental, hormone or age related. 5 out of 6 sisters is more than just a coincidence I would have thought. Good luck with your genetic journey and hopefully you will get the answers you want. We need to try to protect our children and forwarnd is forearmed.

[helen44]

Really good news Julia, so pleased for you 🙂 I stopped at 6 Docetaxol -onc said she would keep it in reserve. Mine finished in Feb 2015 and I am on herceptin, exemestane and Denosumab. Have a CT scan end of Feb to look forward to so off to Fuerteventura in half term first.
Good news for you too Nicky -looking forward to seeing you on Tuesday.
Helen x

[julzd]

Thanks Sharon 😁 The relief when he said we have good news even the nurse said you look like its took ten year off you . We are all over the moon or was great to give the kids good news after all this bad news for months. Hope you get same results at least we know it works. He said I can have 8 instead of 6 if I like I dunno what to do what do you think ? X X x

[scratch]

Jultz.😊 happy faces in your house and family.x

[scratch]

Hi jultz.what fab news.at least its been worth all horrid side effects.im due scan in Feb .not seeing oncologist till march.as my 1st march appt cancelled as oncologist going on holiday now is 15th.iv asked her secretary for phone consultation as dont think I can wait for over 4weeks for results
I hope I have same good results as you.well done,😊❤

[julzd]

Thank-you waffles ❤ X x

[Waffles]

What great news Julzd. I'm really pleased for you. Good luck to everyone awaiting results I hope you all have such good news.

Hi Anneemay,I understand what you are saying. This time last year I was going to the gym and yoga classes several times a week. I really miss exercise and although recent radiotherapy has helped a lot I don't expect I'll be able to go to a gym again.
Hi Carolyn, like you, I had several (9) years between my primary and secondary diagnoses. I really had started to relax too and actually had begun to think I was clear of the disease for ever. It wasn't to be. It is a cruel disease.
However. I certainly say to both of you - I've only been a member of this forum for a few months but it has helped me so much. There are so many knowledgeable and kind people here. The lovely Marirose and I have been sharing our experiences of the treatment we are both on just now. It really helps to know you aren't on your own. Best wishes xxx

[julzd]

Thanks chocolates I will have a talk to him after number six and see how I feel most people seem to stay stable and fergal jays mams have shrank just on h and p so maybe the h and p are ok on there own X X 

[Chocolates]

Julzd, I had 7 docetaxols this time - but that was a struggle - the last dose was a half dose but the se's were still so awful that I stopped.  My family wanted me to have more but I just couldn't do it.  However, I finished in April 2014 and h&p has kept me stable ever since.  If you can do it then maybe it's worth a shot but I think I'd ask if you can return to it at a later date if needs be.  I think that would then influence whether I would have more now or keep it in reserve.  It's a brutal chemo but does seem to knock the uggers back.  I haven't really helped but ultimately you do what is best for you xxx

[Carolyn52]

Hiya Anneemay - Welcome to the forum and like you I was dx in 2004 with primary BC  had the op, chemo and rads and then in October 2015 was dx with bone mets and I was absoluted shocked after all this time too. 

I was always "uneasy" until I reached the ten year landmark but then celebrated by retiring and moving house etc and then last year suffered hip pain and was treated for a  trapped nerve and then arthritus . It wasent until I got an xray in October that the mets were found and were well "settled in " !! I had a hole in the femur ( got a pin in now ) and hip,pelvis and knees well invaded. I manage to get about on a crutch but have gone from being active and a shopaholic to just getting up a few aisles in the £1 shop at best !!

Loosing the independence is a huge downer but like everyone on this site - put on a smile and try to be positive. 

I am on letrozole, adcal and now denosumab injections . I do not plan chemo again in the future if its needed as I just dont feel its for me this time. 

Carolyn xxxxxxxxxxxxxxxx

[Marirose]

Welcome Anneemay

I do hope you will find this thread useful you will get advice and support from some very knowledgeable ladies here.xxx

[scoobiesue]

Welcome Annemay  You will find lots of support . Some fun too. Sue

[julzd]

Thanks Janette ❤ X x

[rosie53]

Annemay, welcome to the forum, sorry you have had to join us but we are a friendly bunch and are always on hand to support and give advice. I understand what you mean about not being able to be as active now, I didn't do as much as you but have always been a great walker but really can't do as much as I use to and it really is frustrating! !

Hugs Janette xxxx 

[rosie53]

Julzd, great news on your results!! Really pleased for you. 

When I was at the hospital on Thursday waiting to see my onc I got talking to an elderly lady, she was dx with mets to bones and liver  3 years ago......her primary was 46 years ago!!! I was really shocked to hear that, she was doing really well on treatment . 

Hugs Janette xxxx 

[JulieD]

That's interesting Anneemay,

I'm the eldest of four girls, I was the first to get bc back in 1999, the I had mets in bones in 2010, two of the three others have had bc now and I'm going for genetics appt next month.

[Anneemay]

Thankyou everyone for your support it really does help being able to talk with people in the same or similar situation. Family and friends are very supportive but have not all have been there and worn the tee shirt. 🙂 xx

Having said that, I have 4 wonderful sisters, 1 of which is undergoing treatment dx July 2015 and the other 3 all have completed their BC journey and we have been told that it is not genetic.!!!

[julzd]

Thank-you ❤ yeah I've got 2,more docetaxcol  to go then h and p the oncologist said if I want I can have an extra 2 docetaxcol it's up to me what do you all think ? X X x

[Chocolates]

Fab news julzd, so so pleased for you.  You're on h and p too aren't you?  It's a good one.  Long may it continue.

welcome anneemay, so sorry you've had to join us but we are a lovely supportive group and this is a place where we laugh, rant and say whatever we want and the other ladies will get it.  What a shock for you - to be clear for so long and then get this devastating news.  I really hope that the plan put in place and the upcoming review will be positive and enable you to move forward and accept your new normal.  If there is anything we can help yu with just ask.

lovely and sunny down south today - nice to have a break from wind and rain.  Hope everyone is doing ok.

huge hugs,

hxx

[JulieD]

Great news julzd! xx

[julzd]

Hi Sharon got my results yesterday I was absolutely terrified but they were great half way and some of  the nodules on lung and liver have disappeared and the others have shrank so I'm aloud to stay on this treatment I was so relieved ❤ when do you go ? X X x

[Anneemay]

Hello I have bone mets dx in Sept.2015 with bilateral fractures to 9th ribs, spots in my left scapula, cervival and lumbur spine, from my original breast cancer dx 2002. Currently on Denosunub and Exemestane but waiting for a further Ct scan on 10th Feb for my oncologist to plan further treatment as I also have mets in my lung and pleura. This time last year I was fitness training, going to regular pilates, walking and cycling. I am so frustrated at the moment because I am not able to do these activities as I get breathless on minimal excertion. I know I must remain positive but sometimes it is difficult when I see the sun shining inviting me to go out for a walk in our local nature park and I know that I am physically incapable to make it.:(  Sorry If I am being a bit defeatist but I am still feeling a bit angry that the cancer has come back after 12 years of being clear. Life is definitely a lottery.!!

[Marirose]

Hello Sameelee

Enjoy your exercising while you can but remember to take breaks and don't over do it as Julie says. I used to enjoy walking until MS slowed me down but Cancer put a stop to that. I too find it hard to stand for long periods of time due to my spine and leg mets. I found it hard to accept a walking stick then later a wheel chair which I hate but at times I need it. I now have a rollator which helps to keep me walking and when I am tired I can sit down. So you go girl with your fitness regine I envy you.

Best wishes xxx 

[scratch]

Hi jultz.hope all went well for you.,,,❤ sharonx

[JulieD]

Nice to see you posting Sameelee. Also good to hear you sounding as if you are coping and upbeat.

I too have bone mets in my back/ribs etc and find that standing for any length of time is uncomfortable/painful. Well done you on all the activity but do remember to try to pace yourself so you don't land up suffering.

I get my CT results on Monday so appreciate the anxious waiting period you are facing, think we al find it daunting.

Wishing everyone as good a weekend as possible xx

[Sameelee3]

Hello Everyone! I last posted on the 11th January and it's taken me ages to scroll through all the posts since then... you are a prolific bunch! A quick hello to Karen who seems to be in a similar place to me; primary diagnosis in 2011/12 and now cancer in my spine. Had 5 rads, am on Exemestane and Denosumab. Next CT scan is at the end of this month, but have to wait 2 weeks for results.... excruciating! I'm  60, by the way, with a husband and a son who's only 23. I worry about him more than I worry about myself! 

Am managing ok taking painkillers to ease the aching back but also doing lots of walking and this week went a bit mad with a cancer patient session of circuit-training, a taster session of Tai Chi and half an hour of Pilates. but my back is aching now! Am lucky enough to have a Maggie's Centre 20 minutes walk away, so can go there for support as well. 

My back pain is worse after long periods of standing; browsing clothes shops is not quite so much fun any more, but it doesn't ache when lying down, so am sleeping ok. Am beginning to get a feel for many of you regulars that post, but absolutely no hope of rembering names... 

Am loving the posts when someone says that their cancer has 'disappeared' from view, or shrunk or such like... I know it can't always be good news, but it really helps to have positive stories to give hope for the future. Feel privileged to be one of your number.... Have a good weekend,  Sameelee3 xxx

[Carolyn52]

l had my femur pinned 18th November as an emergency as it was thought that with a hole in the bone it could snap at any time. I have cancer in hip, pelvis and knees . 

I can get around on a single crutch but havent driven yet . There is only two of us that I know of  on this site that have had this done. Everyones treatment plan is unique and so we all have different stories to tell on the board and that is why its so nice to be part of this forum.  

Carolyn xxxxxxxxxxxxx

[scoobiesue]

Brilliant news I'm delighted for you Janette. I have had my femur pinned and am now recovering from a hip replacement with a long pin. Happy to help if I can. Sue xxxx

[rosie53]

Thank you ladies for all your good wishes, do any of you know anything about having your hip pinned? hoping that x-ray comes back ok and won't need to have that done though. 

Hugs Janette xxxx 

[KazMOr]

Great news Janette, nothing like celebrating with nice food and a glass of bubbly x

[Waffles]

Great to hear your good news Janette xxx

[JulieD]

Great news!  Enjoy your feast xx

[Marirose]

Oh Janette brilliant news so pleased for you xxx

[Chocolates]

Fab news Janette - so so pleased for you xxx

[julzd]

Great news jenette you can relax now x x 

[rosie53]

Hi ladies, yippee my CT was stable 😀markers going down. I explained I was still a bit concerned about my hip / leg pain but she said she wasn't worried, she said that because I have C in my hips and it's a weight bearing area that I will struggle there....does that make sense?? Anyway she sent me for an x-ray on my hip to check how thin my hip bone may be, she said it could be that I might need it pinning but thought highly unlikely as she would expect me to be in a lot more pain than I explained I had. Sorry if iv gone on a little sometimes things are hard to explain in a post arn't they. 

Well we have celebrated with fish and chips and a bottle of champagne courtesy of my daughter  ha ha!!!

Hugs Janette xxxxxxx 

[Chocolates]

Hello ladies,

just wanted to say good luck to everyone getting results - it's such a difficult time.

janette, so sorry to hear how difficult your week has been.  My heart goes out to you.  Just want to give you a huge hugxxx

nicky - just fantastic news and out of the blue too.  Best way to get it I think.  You've been through a lot recently so this is just the news we all wanted to hear.

im waving to Lynn in sunny Florida - hope it warns up a bit more and can't wait to read all you've been up to when you return.

welcome to our newbie's - you've come to the right place.  No one wants to be in this club but we are a great bunch and all support and help each other.  

Marirose, hope you're keeping well and looking after yourself.

huge hugs everyone. Sorry if I've missed you out.

hxxx

[Marirose]

Hello to all you newbies and to my old bony friends

First Lynn great to hear you are enjoying your holiday you have earnt it.

Diddy what a great gift to be offered a new rad it sounds much better than the old way I have heard that plans are for a more targeted radiotherapy that fires straight to the tumour I wonder if it is that one.

Nicky what great news about your CT results I go for one tomorrow to see if cape is working hopefully the onc will have the results for next Wednesday when I see her.

Can I ask everyone who miss our lovely Belinda to visit the dedication threads she deserves a mention thanks to Julie for starting it.

Best wishes to all xxx

[Carolyn52]

Hiya Diddy 

Just wanted to say all the best for your rads and dont forget to post on the board and let us know how you get on as its obviously something very special as not many of us have heard of it before. 

Unless you have medical knowledge ( doh - I dont as I was a legal cashier before I retired) we have to place our trust  with the Oncology Teams who should be safe hands for our health and survival. 

Carolyn xxxxxxxxxxxxxxxxxx

[KazMOr]

Hi Lyn, thanks for letting me know your experience of Zometa. I have a holiday planned for April so they have agreed to start it once I get home. Hope you have a wonderful holiday. Thanks again Karen x

[julzd]

Great news about your results Nicky bet your so relieved x x x

[rosie53]

Thanks Nicky and Scoobiesue, just starting to feel a little easier about it now. Although the lady I got her from has said she won't advertise her til Friday to give me some breathing space  (she knows about the C word) which I think was very good of her. 

Nicky great news about your results, I bet you feel sooo relieved now, I am terrified about seeing my onc in a few hours, just praying the verdict is not too painful!!

Hugs Janette xxxx 

[JulieD]

Hi Diddy,

Not many places offer steriotatic radiotherapy so you are amongst the elite! You are lucky, it is a highly acurate form of radiotherapy so more concentrated on the bits needed and less damage to surrounding healthy tissue. Good luck, I'm sure you'll feel the benefit. xx