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Bone mets - please join in

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Re: Bone mets - please join in

Hi Val, lovely to hear your update, and that you seem to be doing so well. I'm walking better each day now, even with the DVT in my left thigh, and hope you will be soon too (walking well I mean, not getting a pesky DVT!). It is such an improvement from my pre-op state, I am so glad I had it done.

Lots of love, Julie x

lizcat
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Re: Bone mets - please join in

Great to see you posting Val and hear about your progress. Keep it up but don't try to do too much too soon!!

Liz x

scottishlass
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Thanks Julie, I know it is for the best. Just a bit impatient. Hope you have a great weekend. Take care, Val

juliet66
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Lovely to see you posting on here Val. Am glad you are feeling a bit more independent. Make sure that you follow your GP's advice about baby steps. Increased pain is not what you need at the moment !

Take Care

Julie xxx

scottishlass
Member

Re: Bone mets - please join in

Just an update really and to wish you all a great weekend as the site often becomes quiet over the weekend I notice.
I had my staples removed today and the district nurse said that I am healing nicely. She used to work in orthopaedics and had worked with my surgeon in the past, small world.
My new seat for the bath arrived which means I may be able to bathe without my OHs assistance. He is doing enough already for me and I couldn't have managed without him. I got my appointment through for the clinic in orthopaedics, spoke to my GP, sorted out my meds, phoned the pharmacy and nodded off in bed after my busy morning. MY GP doesn't want me to reduce my pain meds and patches quite so quickly and wants me to do it in baby steps.
A lovely bouquet arrived from my dearest friends today which put a huge smile on my face. Just what I needed. Fell a bit up and down moodwise throughout the days but it is getting better. My brother in law is popping over to stay the night which will be nice and I can see the port or whisky getting a hammering. Not by me though. Too much morpine so don't need any!
Love to everyone. Val

Esha_Ness
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Re: Bone mets - please join in

Oops,pressed the wrong button before finishing. I hope this has been helpful to you. As others have said there are alot of us on CAP. Now off for supper. Leave Lauserne for home tomorrow!
hello and well wishes to all.
Esha

Esha_Ness
Member

Re: Bone mets - please join in

Hi all,
Am on hols at moment but managed to have a look at the forum, realizing how much on going support the forum gives me.

In response to Donns58 re CAP.I have been on it now since March 2011 and my PET scan in July showed"complete response"on all of my bone mets accept for one small ares that has been treated with Radiotherapy so all is stable.Iam also on hormone treatment examastine, calcium tablets and bondronat.

I was diagnosed with bone secs in Jan 2010 and am still feeling well and pain free.
The side effects of CAP vary from month to month but it is manageable.
Having had 8 cycles of 2 weeks on and one week off , I am now moving on to alternate weeks. Main side effects for me are sore feet, sun sensitivity and tingling ends of fingers and tiredness( this is improving.) This holiday I have been cycling 25 to 30 kms a day when biking and have normal energy and strength. I use some of my DLA money for comfortable footwear, Flexitol roll on for feet and sunglass. have asked the Consultant about treatments and it is clear that there is a range of treatments out there

donns58
Member

Re: Bone mets - please join in

I just want to say a big thank you to m1yu, nicky08 and lizcat. Thank you so much for your support I really thought I was going to go crazy last night from pure fear. I will look at those inspiring stories too, think I'll need at least some sleep tonight, fingers crossed. It's really great to have some people out there who understand what "that feeling" really feels like. I've just finished my 5th cycle of cap, 2 weeks on 1 week off. My feet are quite sore, my hands aren't too bad though. not sure how many cycles i have to have though, will probably find out when I see the onc next Wednesday. I'm sure there is a PET scan coming up soon too.
Having spoken now to you ladies I feel I need to start getting myself together. I thought I was doing so well keeping positive. It just shows that just a small comment can bring you so far down if your not prepared.
Thanks again, and I look forward to hearing from you all soon.
xxx

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Re: Bone mets - please join in

Hi donns,

I really hate those "some one has died" stories because it just make me depressed. I am not her!! Can't I just be treated as "ME"??

I'm only a newbie on cap, just started my second cycle. I can feel it working well for me, but tumour marker has gone the wrong way! Ignore it, so I was told because all the other signs are pointing in the right direction.

There are a few of us just started cap and a few long term users have been coming along to support us and have given us some advices and encouragement. Please feel free to join us. You can find us on the following thread (hope it works).

http://share.breastcancercare.org.uk/forum/viewtopic.php?f=94&t=33431&start=24

Take care xx

nicky08
Community Champion

Re: Bone mets - please join in

Hi Donna
It's always scary when you hear of someone who has died from BC, but we are all different and no-one knows how or why they didn't respond to treatment. As Liz says, most of us just get on with it and therefore you don't get to hear our stories, However there is a thread in the secondaries part of the forum called something like Inspiring stories - well worth a look if you are feeling down 🙂 As to Cap, I also don't have any experience of that type of chemo but many ladies on here do including our very own Xeloda Queen, Marilyn, who has been on it for around 8 years now. A very positive example to us all 🙂
Take care and hope the wobble passes, that Cap works well for you and you have a lovely time on your daughter's 18th birthday.
Nicky x

lizcat
Member

Re: Bone mets - please join in

Hi Donna,

I'm not on cap but know there are quite a few ladies on here who have been on it for long periods of time (years). Everyone reacts differently to every drug and whilst it is awful to hear of people not making it, there are many who do well but you just don't hear about them cos they're getting on with it! Some people seem to love telling others stories of doom and gloom and thrive on it. Bizarre.

I'm sure the 'cap' ladies will be along to reassure you.

Good luck, Liz

donns58
Member

Re: Bone mets - please join in

Don't know if anyone can help but I'm having a wobble. Maybe just to get some feedback from people who understand may help. Bilateral breast cancer in 2006 and left nodes infected. I had 8 essions of A&c and 4 Taxol, 25 radio, followed by Tamoxifen until Feb this year. I was then diagnosed with secondary bone mets, spine hip and right leg. Started hormone treatment for 3 months Femera which didn't work so have now started capcitabine, sorry think spelling is wrong. Which seems to have got the mets under control and the tumour marker has moved down. As you can imagine i felt quite happy for a bit of a mind break. Last night i meet someone who said that their mother had the same but died from the mets once they finished the drug.
As you can imagine I've been awake all night worrying it's my daughters 18th birthday next week and I'm petrified that the doc will stop the treatment.
Has anyone been taking cap for a long period? I've heard some people can go on for years.
Any info will be greatly received i feel like a nervous wreck and have to get up for work in a minute.
Love and hugs to all xx

Guest user
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HI Broonstick lady,

Pooer you.

Firstly, ignore the consultant go and see your GP. Mine gave me the DLA form to complete straight away when I got my secondary diagnosis and signed it for me.

Secondly, you can always ask for a second opinion. I did and was reassured that I was on the best treatment that was available and of benefit to me in my situation.

I really felt for you as I had a Hickman line put in for my IV chemo at start of secondaries treatment and was hospitalized with septicemia/nuetropenic shock three times in a 5 week period and all because of bugs in the line. Everytime they flushed it though!!! AS soon as they took it out I was fine again - I did well to survive! It was really scary and was what prompted me to believe my prognosis and decide to give up work.

Moan away, we all need to sometimes. Keep smiling if you can.

Sue

lucinda
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Re: Bone mets - please join in

Hi broomsticklady
I cannot believe your onc stated a generalised prognosis.I was dx with exstensive bone mets,lung met and axilla mass in may 2009.I was planning on being around for some time yet.
I had chemo for the lung met and that now clear.I am on bondronat for the bone mets.It has worked for me so far as all my bone mets are currently stable.I don,t find the early morning a real problem,it just becomes a routine.I miss my early morning cuppa,but it was usually cold by the time i got to drink it anyway!
I did get Dla,but did not fill out a DS1500-did not fancy doing it that way.Filled out all the many forms and my onc signed it.I just filled it out the way I felt at worse.I felt like hell the day I filled it out.Can you get macmillan to fill it out for you?
just take care and be kind to yourself.
Hope you manage to sort things out

Linda xx

my last post got lost so this may appear twice!!

JulieD
Community Champion

Re: Bone mets - please join in

BL,
Thats awful! Don't they get you frustrated when they are so set on their own route! As for the DS1500 that's outragious! Of course we all hope we''ll beat any guesed prognosis but can she guarantee it, I doubt it, so should fill in the form - have you trief your GP? Mac nurse got my GP to sign mine.Hope you are soon feeling less helpless, with big hugs, Julie x

Guest user
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Good to hear you're back Val - we 'met' before my sec dx.

Me, feeling in tearful helpless stage. Saw onc for first time since sec dx on Friday and went armed with list of questions but wondering why I bothered. Can't say she's disinterested, she's probably very kind, but if you want to deviate slightly from her recommended route - forget it!!

I have awful veins. Hickman during initial chemo gave me septicemia and I had a pretty bad time of it. I wanted a portacath to take the IV bone drugs. "Portacaths aren't used long term" (ask Dawnhc abou that - 5 years!! "More problems than you realise" - didn't elabaorate. Eventually agreed to investigate but I fear results of that are a foregone conclusion. Her solution is use drugs staright away - OK, a solution, but IV is better ("No its not - jury still out!"). I'm now taking the bondronat but have decided I'll get lots of benzos from my GP and dope myself up to try cannulas - the last one took 2 hours to get into me so I do need some help in that direction.

I asked about Cyberknife - "Not used on spine, brains only". again, will investigate but again I'm not holding my breath.

Final straw was she won't complete DS1500 for DLA - "not appropriate yet.". She tells me average prognosis for secondaries generalised is 2 to 3 years, and may be longer for bones only - I have a 3mm nodule on my lungs that they can't identify but have said is suspicious and will be CT scanned in 3 or 4 months. If thats grown then, will that be suffiient?

Sorry to moan - I feel so fed up and keep bursting into tears for no reason. Tho on a bright note, I said to a close friend I'm suffering from spontaneous leakage and her response was 'Oh No Nina, not incontinence too!' - made me laugh anyway.

Guest user
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Hi everybody,

Val its good to have you back on the forum, you have been missed. It sounds like the op went well so hopefully you will feel the benefit soon.

Sarah, I think you have coped brilliantly with all the chemo that you have had. The SE's can get you down. Try and take it easy, the chemo does make people feel tired. Hopefully when this lot is finished you can have your mx.

I am waiting for MRI scan results.

Alex

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Glad you are back home Val.
Navelbine is not the doddle I assumed. This week have had probes with internal plumbing if you get my drift. On the night I took day 8 capsules I was suddenly exhausted,bed at nine ish and slept until ten ish next morning. Still that's the last of them for this cycle. Surely they must be working ..........
Xsarah

Guest user
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Hi Val and hubby, so glad everything went ok, just take it easy now and recuperate, rest rest rest, love junieliz x

Guest user
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Re: Bone mets - please join in

Val, thanks so much for sharing your progress with us; it does sound like good news. Hope the recovery continues smoothly
all best wishes
Fran
x

nicky08
Community Champion

Re: Bone mets - please join in

Welcome back Val, take it easy and enjoy the tea and toast in bed 🙂
Nicky xx

dawnhc
Member

Re: Bone mets - please join in

It's great to hear from you 'in person' val. What a relief to know that you had that op in the nick of time!!! I hope once the pain of the surgery etc. is over that you will notice a big difference and will be able to move forward with a lot less pain to cope with. I'm sure you won't need telling that it all has to be done very slowly and suspect if you think different your hubby will be keeping a close eye on you.

love & hugs
Dawn
xx

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So glad you're home safe and sound.
Take it easy and rest/exercise will be your focus for some little time until you get stronger....

Your husband sounds like star.
Sending you both my very best wishes for a steady recovery.

Wx

JulieD
Community Champion

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Glad it all went well, bet it's lovely to be home! Enjoy the rest and be a god patient!xx

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hi Val, glad your home, take things easy Avril x

Happyfeet
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Val - best wishes from me too, I hope you are more comfortable and glad to be home. Have read many of your posts over the years and found them kind and uplifting.

Guest user
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Hi val,

Good to hear you were let home early and the op went well.

It's good to have you back and take care.

xx

Ramsfan55
Member

Re: Bone mets - please join in

Wow Val you are an inspiration. You sound like you have a great husband and medical team too. Take it easy now and let your body heal.

Lots of best wishes for a speedy recovery x

Suzanne x

dotchas
Member

Re: Bone mets - please join in

Oh Val, I am so glad to hear that you are home.And so glad they caught that bone in time,things could have been so much worse. You will be glad to be home with the op behind you. Just appreciate relaxing and letting your body heal.
Lots of love n hugs
Hope to see you soon
Dot
xxx

scottishlass
Member

Re: Bone mets - please join in

Hello everyone, I got home last night and have been ordered to take it easy for a while and rest ( but to get up and walk round room frequently) and to do deep breathing to get lungs and oxygen working and wiggle toes etc. I have even more meds to take and I get my staples removed here at home next week and some blood tests done too. Their only concern is my HB which is only 8.5 but he doesn't want to give me a transfusion as he thinks it will get better on its own when I get home. My husband has put the spare bed in a room downstairs so that if I want a rest in the day I don't have far to go. My husband is a retired nurse so I think that was taken into account for an early discharge from hosp.
I went to the hosp planning to have a normal anaesthetic but was persuaded my doctor that a spinal block would be better for me but if I was not coping they would knock me out! I was awake throughout the whole procedure and there was a see through screen between me and the 2 surgeons! The surgeon told me last night that it was just as well we had done the op immediately as my bone shattered when he was hammering in the screws. I could have done more damage if I had fallen outside. I am a lucky lady.
I will be posting now and again but feel a bit fragile but wanted to let you know that the op went well and the xrays show that the screws and pins are in the right position. Thanks for all youe messages and support. It really made a difference. Love Val

juliet66
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Re: Bone mets - please join in

This is your post. I always go to 'Latest Posts ' and scroll down. For me it is a quicker way.

http://share.breastcancercare.org.uk/forum/viewtopic.php?f=10&t=33342&p=580943#p580943

Understandably you feel crap but we all have to take the blow and then gather ourselves together. I am sure people will be here to give you advice.

Julie x

juliet66
Member

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Sorry to hear your news. I saw your posting and will try to find it for you x

Julie

Happyfeet
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Hi and sorry if I seem abrupt but too many threads on this site and my own one has got lost. "Who are you" I can hear you say.Never mind, been to Onc today and bad news, tumour markers doubled, Exemestane not working so stopped. No treatmemt then just "wait". Oh god, thts it then. Sob.

lizcat
Member

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That's even better news Peacock.

Welcome home Val! Remember to try and take it easy even if you are tempted to do too much.

Liz x

Guest user
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Excellent news Peacock, am so pleased for Val.

Julie x

peacock
Member

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I had another text from Val she is going home tonight, she must rest, she's naturally feeling tired but we all know she will be better off at home.

I'm sure she'll be writing herself as soon as she feels up to it.

nicky08
Community Champion

Re: Bone mets - please join in

Hi Joanne
So sorry to hear of your diagnosis but you've come to the right place for support and experiences that we have all had. We really do know what you are going through and how scary everything will be right now. I was dx with bone mets (hip) in 2008 and thought my world was about to end - however, as you can see, it hasn't! I was previously on Tamoxifen after my primary (in 2003) but it didn't work for me, or stopped working. After a initial 6 rounds of FEC chemo I have now been on hormone treatment, Aromatase Inhibitors, as well as bone strengtheners (bisphosphonates) All seems well, touch wood, and I lead a life not very, if at all, different to the one before my diagnosis. There are many ladies on here who have been living with secondary breast cancer for far longer than me as well, some with bone mets, others with different mets. We all seem to have felt easier to deal with our dx once we knew our treatment plan, and also the extent of our mets. I hope your CT scan doesn't throw up any other nasty surprises and place do keep in touch with any questions you have or any support you need. We're all here to help you 🙂
Nicky x

C_Jo
Member

Re: Bone mets - please join in

Hi Joanne
Sorry to hear about your new diagnosis. I found out that I had bone mets mainly in my spine and pelvis in June this year. My original BC was in 2000 (age 33)and I have recently had a WLE for another 2 primaries. I know what you mean about the fear of not seeing your children grow up. One of my daughters was talking about what I wanted to be called when she had children herself. She is only 13 at the moment and was just imagining what it would be like with lots of grandchildern in the house. This made me incredibly sad, to think that I may never see them or be here for my family(I have 4 teenagers)
On a more positive note, the drugs are always improving and some of the ladies on this thread have been around for 10 yrs plus.
Chances are that we may be there for them for years to come.
The fear gets easier to cope with.
Hope your CT results are positive.
Claire

June_BCC
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Hello joanne130

Welcome to the forums, this must be a very worrying time for you.

Whilst waiting for replies maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

Best wishes
June, moderator

joanne130
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Hi I'm new to the site, but not new to bc. My story started in March 2009 when I was dx with bc in right breast. Had mastecomy EC chemotherapy, rads and now taking tamoxifen. However I received the devasting news yesterday that it has returned to my pelvis, awaiting CT scan to see any further. I'm not afraid to admit it but I'm scared I'm 34 and my daughter is only 3, I'm now trying to cope with the worry of the treatment and the thought of not seeing her grow up. I'm in a dark place at the moment any advice would be appreciated.
Thanks

Ramsfan55
Member

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Great news about Val. So pleased.

Suzanne x

nicky08
Community Champion

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Thanks P, wishing Val a speedy recovery and a welcome return to these boards, she's missed 🙂
Nicky xx

Steris
Member

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Thanks Peacocks p so pleased that Val's op went well and she managing to get up with her zimmer.
Sending her best wishes and hope she out for the weekend.

Love
Chris x x

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Thanks Peacock, I'm so glad to hear Val's operation has gone so well and that she is already up and about. I'm five weeks on from my similar pinning op, and walking well enough that I sent my loaned "perching" stool and trolley back today. Hopefully the surgeon will be pleased with me when I see him on Friday.

Julie x

belinda
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And the same best wishes from me, thanks Peacock and hope you are home asap Val..x

JulieD
Community Champion

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Thanks Peacoke, that's good news. Like the others I send good wishes love and hugs xx

dawnhc
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So glad to hear Val's news Peacock - thank you for passing that on. Hope all continues to go well and that she can be home by the weekend - and behaves LOL - not doing too much :). Lots of hugs Val

Dawn
xx

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Hello peacock,

Lovely to hear that Val's op went well & she's already on her feet again. I have been wondering how she is. Please pass on my best to her & of course a cyber hug!
Dugsy

peacock
Member

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Hi ladies

I had a text from Val this evening, she wants me to pass on her message … so here goes. “Still in hospital, no laptop, Op went well, out of bed on zimmer today, home by week end”…..

I’m sure you will all want to know her news and wish her well.

Guest user
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Great news Sarah !!!!!

xxxxxx