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Bone mets - please join in

dawnhc
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Re: Bone mets - please join in

No thoughts or ideas Val but it is great that you feel better after the transfusion. I would like to think my aches & pains would reduce with a blood transfusion but that is the odd thing - my onc was saying the other week how good all my bloods were - consistently good! I am noticing much more pain at night now though and don't want to go the sleeping pill route so am wondering if low dose of amitryptyline will help. Might call my macmillan nurse and ask her. I often sleep in till around 11 a.m. and OH is good as he doesn't disturb me. I discovered a number of the Harry Potter books at the hospital book stand recently - I never read them when they first came out so thought they would be good for sleepless nights. Noooooo.... not good they keep me up as I can't put them down! Not sure how much I read cos I often wake with light & glasses still on a couple of hours later lol.

Dawn
xx

scottishlass
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Have notices that since I had my blood transfusion on Monday that the pain I have been having in my back, ribs, spine and hip have reduced dramatically. I wonder if any of you have had your HB done in blood tests recently. I would be interested to hear if anyone else on here has had a B Transfusion and found that the aches and pains were less. I know a low HB can make you feel tired but didn't know that the difference in the pain I have been experiencing would help with pain too. Any thoughts/ideas? Val

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Oh Dawn I hope you are not in too much pain with your arm, what a pig to have path fracture. Rosie, I hope radiotherapy keeps on working for you, you are having such a tough time. Have you seen any physios? I had my rads to pelvis end of December and I am still being told it might be a few weeks until they know if I will walk without crutches as it isnt clear until inflammation reduces. This waiting game is very hard to cope with. My husband is really down at the moment. He has been so fab but I think reality is hitting him now. How do your partners cope? Any ideas what I can do to help him? I hope everyone stays safe in this snow xxxxx

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thanx laurie, playing the waiting game for couple of weeks but want to arm myself with all the questions i can ..thanks again ..Avril xx

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Avril

I was told by my onc that Taxotere is considered the 'gold standard' for liver mets. I started off with FEC x3 and had progression to my liver and then moved to TAX x3. SOme oncs will consider using the same chemo again if you have had a good response to it in the past and if some time has elapsed since it was last given.

Laurie x

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hi ladies, once again im here with a question..... wen you have had BC and secondarys then the cancer appears in the liver (again) is the chemo the same as the orignal BC chemo FEC?,or is it a diff chemo???? i hope this makes sense

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thanksevery one

I just have to hooe that the MRI plnned for next week shows some shrinkage and then get on with things, i am being such a pain in the A------e that they will get me out of here one way or another,

Love Rosiexxx

lizcat
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Oh Rosie, no wonder you feel like the rug has been pulled from under you, especially after all that build-up. Let's hope they are right and that the rads are working. My understanding is that even though rads can give immediate relief, they can also keep on giving improvement for a few weeks after. Good luck with the scan and then the re-hab.

Liz

dawnhc
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Oh Rosie 😞 i'm gutted for you as well. I know in your place I would feel so frustrated - you hold onto that bit of hope that something might, just might work for you and then they pull the rug from under your feet and that bit of hope is gone. Well I just hope for you that they are right and that the rads will make a difference that you will notice over the coming days.

Dawn
xx

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Hi All,

Op is off now because they feel that there is no benefit, my mobility won't be sny better snd they feel that the effects of
radio the other week may still be working. I have to have MRI scan next week and then re-hab before going home with a care package. I',m gutted but suppose I am in their hands and have to have faith in what the are doing.

Many many thanks for all your good wishes and support
Love Rosie xx

lizcat
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Good luck from me too, Rosie. Will be thinking about you and know you will be apprehensive to say the least but it will soon be over so you can start to get better and get on with things with a lot less pain.

Liz

JulieD
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Thanks for that Dawn!

Rosie,glad the op is almost upon you, bet you are feeling a mix of relief and anxiety! Will have everything crossed for you (& will send up a prayer if thats ok)Take things easy after and give yourself time to recover though I'm sure you'll be wanting to get on and get on with things! xx

dawnhc
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Rosie wishing you all the best for the op tomorrow. Hope you are up and about in no time :).

Julie much depends on the siting of your port. Mine is high up near my collarbone and really only a thin layer of skin covering the surface of it so I don't feel anything when it is accessed. Some are placed much lower in breast tissue and so you are more likely to feel some discomfort. The first time the port is accessed it might be better with some cream as you may still be sore but after that I would give it a try without and see how it is for you.

Dawn
xx

trudy2010
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All the best for tomorrow, Rosie, thinking of you xxx

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Hi All

Jusgt to let you know that my op is on for tomorrow. Evert thing crossed for a good out come. I do know every-one is routing for me and all the support helps.
Love Rosie xx

JulieD
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Hi Sarah,just bumped your other post up and also suggested port like Dawn.

Talking about ports am having one fitted in couple of weeks for zometa. Dawn, anyone else with a portacath, do you/ is it worth using
Emla cream? I tend to find creas and plastic dressing irritate and just wondered if it was necessary or if you manage without - does it hurt?
Julie

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Hi Dawn

Yes, onc has floated that idea. Do you have to have infusions day 1 and 8? If so I may as well stick with the capsules

dawnhc
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Sarah is it worth asking to have a port put in if you want to go the iv route. I had navelbine back in 2003 and the nurses were very careful with my veins - making sure I drank plenty beforehand, and keeping my arm warm throughout the infusion.

Dawn
xx

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Seeing onc in a few weeks time and it's back on navelbine for me. Trying to decide whether to have iv, 15 min infusion, one blood test but tricky on veins, or capsules- 2 capsules day one, and 2 capsules day 8 with two blood tests and feeling a bit yuk for a couple of days each time. The plus side is im hospital free for two weeks out of three with iv. Any ideas?
X Sarah

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Thankyou Claire xxxxx

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Hi Claire,

Yes there will be a lot more hormonal treatments available if you have your remaining ovary removed as you will become post menopausal, so you could have something like arimidex.

I am going to PM you re oncs.

myfanwy18
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Hello everyone,

Gemma, I was sorry to read your posts. I lost my mother a couple of years ago to cancer, not breast but another one. I felt as though the anchor in my life had gone, I felt very alone. All I can say is that I have found that time has been a great healer for me and now I can appreciate how lucky I was to have had such a wonderful mother. I hope you will reach that place in your own time to. Much love to you.

Trash, I've been reading your postings to - good luck for the op - I think you've got all the ladies on this site rooting for you, quite right to. Lots of love and a speedy recovery to you.

I saw my breast consultant this morning. All went well apart from the enlarged ovary discovered on a recent PET/CT scan. It's put a bit of a spanner in the works because I also saw a plastic surgeon before Christmas who is willing to do a DIEP reconstruction - unusual I know with someone with bone mets. My consultant kept saying it all needs to be timed and when the ovary is removed they need to protect my blood vessels. He also said something quite interesting and I wonder if ladies on this site could explain. He said if I didn't have any ovaries (I've only got one, the other was removed some years ago) that there would be a lot more treatments available to me apart from tamoxifen. I'm probably going to have an MRI next week and apparently one of the blood tests today was going to London to check the ovary thing was not dodgy. I have to say, on a lighter note, men have it easy! Also on a lighter note, when I went back to work I had to go into a meeting about streamlining office procedures - I don't think I had the correct attitude really and just asked how many people are they going to make redundant.

Love to all.
Claire (alias Myfanwy) x

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Thankyou JulieD xx I dont know what I would have done without this board to ask some questions on, and all of you to ask questions of. You are all very kind and brave ladies xx

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Hi All
Just to let you know that I have had a bir of good news at last. The break in my arm was a pathological fracture and not a bone mets.I am being discussed at a muti spinal team meeting to-day. Hope that the op isn't put off.
Again, many thanks for all the support and good wishes. I'll get there
Love Rosie
XXX

JulieD
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gil79,
I just want to add my condolences, I am truley sorry to hear your news. This is, I'm afraid, a cruel and unpredictable desease. You really must not blame yourself, you could do no more than you did and even had you changed onc's the result may have been no different. The important thing is that you were there for your Mum & she new it, your concern and love are the most important things, so try through the rawness of pain to remember the good times. Your Mum is now away from the worry etc so try to take some peace and comfort from that. Bless you xx

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Thanks so much everyone for your kind words. I didn't realise how quickly things could change with this disease 😞

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Gemma
So sorry to hear your loss but as every one says you were there for her and must have made her such a proud mother. Remember her with love and lovely memories.
Rosie xx

lizcat
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Gemma - my deepest sympathy to you and your family at this sad time. I agree 110% with what lucinda has said in her post too you.

Liz x

lucinda
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Good luck with your op Rosie.So pleased you have your daughter to fight your corner in hospital.When my Mum had a stroke the nurses labelled us the moany family.Poor Mum never said a thing but myself and my 2 brothers were appalled at the basic standards of care and there was always something to compain about on her behalf.
I am sure you will feel so much better post op.
Sending love and best wishes xx

lucinda
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Dear Gemma
So sorry to hear the sad news about your Mum, but please do not feel responsible.The problem with this disease is that things change so quickly.I am sorry you feel she did not get the support she needed but she had your love and support which often means everything.
You must be very sad,hurting and angry but please don't blame yourself as it sounds as though you did everything you could.
My thoughts and prayers are with you.

Lxx

Thumbie
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So sorry about your loss, Gemma.

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Hi all,

Just wanted to say thankyou for the advice you have given me the few times I have been on here. My Mum died on Friday, at the age of 63, I have to say I feel responsible as I couldn't get my Mum to want to change oncologists until near the end. I feel that her oncologist wasn't really as helpful as she could have been.

Gemma

JulieD
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Rosie, sending you love and strength. I'm sure the idea of the op is very scary but take heart from Ismarks experience and look forward to seeing some improvement and regaining some independence after the op ( though take your time!)

Val, sounds like a lovely meal I hope they liked it and hoped you managed to enjoy it too and weren't to tiredb to appreciate your own cooking! It is good to do things and feel normal but it so easy to do too much and land up suffering!

I've had roast chicken tonight too Sarah but I had it cooked for me, very nice it was too.Good luck with MUGA & onc. Not had navelbine so can't help I'm afraid,so wrong you have to pay for herceptin yourself disgraceful! Hope rads burns are healing.

Hi Hope123, sorry to hear about your Mum, it's quite a shock and quite a learning curve but we are a friendly bunch and will help you and give you answers and tips wherever we can. The monthly infusion your Mum is having is probably one of the bisphosphonates which are a bone strengthening drug. You say she is not suitable for herceptin so the hospital have done a test to see if she is HER+, she is neg if she doesn't need it, I would think they would have tested at the same time for hormone status, if your Mum is hormone positive then she will be likely to go on tablets too, to help block the spread if she is not hormone+ she won't benefit from them. You will pick-up the jargon as you go along but if you have any questions please do ask.I hope that the results of the scan show stability and wish you and your Mum all the best xx

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Dear All

Not really sure what I want to say, of what I hope to gain from joining in this forum - but since my Mum was diagnosed with secondaries in May 2012, I have dipped in and out of this site in awe of all your bravery and to keep hope and get all sorts of advice on how we can all best cope and support my Mum. Original BC was in 2003, just a lumpectomy and radiotherpahy, very positive prognosis. Anyway it came back and is now in the Bones - a bit in her spine, collar bone and hip I think. She is having a monthly infusion of some kind and that;s about it. We know she won't benefit from Herceptin, I am still getting used to all the terms that are used on here, but I guess those of you reading this know what that means more than I do?? She is generally well otherwise, some aches and pains and can't now lift her Grandchildren (my kids) but getting on with it. We all have good days and bad days, we are really close, but I can't really talk to her about it, don't want to burden her with my sadness, but I know she knows how I feel really. She had a small lump come up on her collar bone - which is how she first realised something was wrong last year, it has turned to two lumps now, and tomorrow we get the results of her recent scan. (first one since her initial scan at diagnosis) The Onc was not that worried, her tumor markers had been stable and are now only a little bit raised. Fingers crossed the results are good and everything is stable.

scottishlass
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Wish I could sneak in with a goody bag for you Rosie. Keep us posted with an news of your operation. Try not to be scared. We will all be there beside you rooting for you.
I had my hip op done in Sept as was awake for the op with just some spinal sedation. I managed it and it has been years since I had an op. I was so scared the day I went in first thing in the morning and my husband couldn't be with me as he had a stinking cold so he just dropped me off and walked me along to admission ward. I got through it and it was much less scary than I thought it would be. Honestly. But it is ok to be a wee bit scared. Hugs to Rosie, love Val

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Thanks for all your lovely thoughts and good vibes, It's sinking in over what I am fseing but i can't live with the sword of damacles hanging over me. Enjoy your meqals and thbink of hospital food !!
Love Rosdie xxxx

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Hi all
I am about to start preparing roast chicken for dinner tonight. I hope they enjoyed your feast Val. It sounds really lovely.
I have a MUGA scan Wednesday morning then onc later. Next day back on navelbine and beginning herceptin again. I am having to go privately for this as the NHS won't fund it again. I am having to travel to edgbaston for it, which isn't ideal but at least I will get the treatment. I had navelbine tablet form before, now it's iv. Anyone else had this?
X Sarah

scottishlass
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Dear Rosie, Just popped in to say Hello and hope you are being cared for a bit better today.
I am going for my Blood Transfusion tomorrow at 9am. I need to have cross matching done then wait for the blood to arrive at my ward. Each unit takes two hours to happen and I am having 2 units so will be there most of the day. I phoned the ward AND my BCN on Friday and somehow a cancellation was available for Monday morning.......
I go to a different hospital in the city on Tuesday morning to have xrays on my hip and thigh and then see the Orthopaedic team.
Not heard yet when I start chemo but will ask tomorrow.
My husband and sis brother are awau out walking today. We dropped off one car at the end of the walsk then I ran then back to the start of the walk. Being Sunday the bus timetables and trains are not so frequent.
So I made dinner for them but now totally whacked. They are not back yet and I never felt so exhausted. I was going to make a nice dessert but too weery so now having ice cream and fresh raspberries and I found some meringues I had made last week to pop on top of that. I have set the table with candeles and crackers so it looks festive!
So roast pork, home made apple sauce, roast potatoes and green beans and brussel sprouts. I hope they enjoy it after the effort I have made. Really really tired but it was good to do something for my OH for a change. Love to all, Val

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Thanks evey one. After a dodgy start to the day, lack of basic care agbain. I have had a shower and feel human. Perhaps this has happenend for a reason, as two weeks ago the Onc. said no spine consultsnt would look at me and now I have the chance of hopefully
making some improvement.
Rosie xx

scottishlass
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Rosie, I have met Isobel and you would never know that she has been through this op as she looks so well. I hope it gives you the confidence to get through the difficult days ahead. We are all rooting for you and all on your side holding your hand. Wishing you all the best. Hugs, Val
Isobel, If you are reading this I hope to see you on Monday at the next Secondaries meeting. However I am having blood transfusions on Monday so not sure if I will be able to come. I hope I can as there is a speaker coming to discuss benefits which should be interesting. Love to all Val

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Isabel.
Thanks for letting me know about your op. My tumour is at T7, you really have given me hope that life will go I was realy despondante. I know it will take time but if I can get some independance back will b e wonderful.
Love Rosie xx

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Rosie, I'm so sorry for you. However, I have had this operation. I had it done in November 2009 as an emergency, because of spinal cord compression. T10 had fractured and was falling forward and pressing on my spinal cord. T11 was also affected, but not as badly. I was on strict bed rest for 5 days - and I mean strict - you know, bedpans for everything! I had to be rolled onto them and was not allowed to sit up. I also was treated with steroids, to reduce the swelling. The operation sounds as if it was the same as yours is going to be. I had rods and screws inserted to support the vertebra and as far as I know, some of the tumour was removed. I had radiotherapy about 6 weeks later. I have had a further dose of radiotherapy, in September of last year to T3, for increased pain. As for mobility, my balance was affected before the surgery, so my gait was off. My balance is still not right, and I continue to have altered sensation in both feet, which I also had before the surgery. I also have severe, intermittent, shooting nerve pains in my thighs, for which I'm on Pregabalin. I can walk, but not very far, because of the discomfort. I used to really enjoy going for long walks as well. I can also drive, which has contributed to increasing my mobility.
All in all Rosie, I am well and enjoy life and continue to plan for the future!
If you want any more info, pm me.
Cheers to everyone else!
Isobel

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Thanks every one for you support, The nursing care has improved a bit and I do have my net book to keep in touch with the world. Will keep you posted re every thing. just hope this doesb't hapen to any one else. It was so quick.
Rosie xxx

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Rosie I send you strength and all my good wishes. It is very positive that the poor care given to you has been highlighted as it is paramount that your care is the very best right now. I have nursed people in your situation but can safely say that however much empathy you can have, there is nothing that can prepare you to be the one in the hospital bed. I hope you have lots of people you can talk to including us. You are always so helpful to others who post on this so I hope we can help keep your emotional strength up! Hope you are comfortable and getting everything you need.xxxxxxxx

nicky08
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Sorry to hear about your bad experiences in hospital, Rosie, and the fact you are needing an operation. As Julie says the op should hopefully stop the risk of collapse of your spine so Im hoping all goes well and that the nursing care steps up a notch or 2. Good luck with the op.
Nicky xx

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Rosie,
I'm sos orry you are in this situation, it must be very scaey. I hate to feel vunerable and your daughters doing the right thing in raising the point of the nurses lack of attention as its them you will rely on for the next few weeks. I do hope you have lots to keep you occupied, I know when I have been in for a long spell, it can drive you up the wall. At least by the look of it you have your trusty computer with you ( a total lifeline) and there will always be people here to give you cheer when you most need it.

Hope you had a good nights rest, thats the other thing about hospitals, you never get a whole nights sleep........

Take care of yourself and I hope you are in one of those overheated hospitals for the next few days are going to be freeeeeeeeeeeezing 🐵

Clare xxx

JulieD
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Rosie I'm so sorry to hear your latest news, you must be feeling fed-up to say the least! You seemed to have been making some steps forward and now this, you are probably feeling a bit vulnerable and scared too, so I send you lots of positive vibes and strength along with hugs. I don't know if the op will improve your lack of feeling but the way I understand it it should at least minimise the risk of paralysis which is one postive. Hoping for many more positives for you - hope the nursing improves and thinking of you/rooting for you.
Love Julie x

lizcat
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Sorry to hear about all your troubles Rosie but hope the op goes ok and you recover as quickly as possible given time and care. Good luck!

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Thanks Laurie food isn't t oo bad and we have had a meeting with matron to-day but sure if i am now the patient from hell. Have to stay here until op next Friday as i could suddenly devwelop this paraylisis at any time. Terrifying thought!!
Love Rosie xx

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Pat,

Sorry to hear about the ongoing saga and hope that your daughter is getting those LRI nurses sorted! So do you have to stay in hospital until the op? I can bring a food parcel over if they're not feeding you 😉

Laurie x