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Bone mets - please join in

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What a shame for someone to die so young from ths disease. My thoughts are with her family and friends and to all of you who knew her.
Christine x
nicky08
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It was a huge shock to read about MYU1 (Miao) this morning. It does sound very sudden in the end so I hope she was at peace with her mother and friend beside her. Such a sweet girl whose posts I always enjoyed reading.
Hugs to all bone mets ladies as well as all secondary ladies at a time like this.
Nicky x

scottishlass
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So very sad to read this news about Miao. I loved her upbeat posts and cannot believe that she has gone so quickly. Life is just not fair. She was far far too young to leave us. Why is this happening to so may young women? Her family and friends must be devastated. Val

Esha_Ness
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Dear all
For those of you who have been using the forums for some time will remember updates from MYU1.
It is with great sadness that I have to tell you that she died last week after a quick deteriation in her illness.
I had only seen her a week earlier and we spent a lovely few hours together with her good friends.
I feel very sad that at the age of 28 her life has been taken away from her so early. Her last few days were spent at the Hospice with her mother and a close friend,as she had wanted. She died peacefully.
Her friend asked me to post this on the forum as MYU1 would have wanted us all to know.
Esha

myfanwy18
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Hello everyone,
Julie I've just finish six lots of Taxol for BC. It had gone to an ovary so I had to have a hysterectomy first. The BC had got into some abdominal nodes and liver apparently. However the scan after treatment showed it was never in my liver and all the nodes were so small they weren't worried about them. I am now on Armidex. Taxol seems to work very well so hopefully it will be the same for you. My bone mets also improved to and I'm also on bone strenghener. I found the treatment very doable, slight side effects although it knocked my blood a bit. It's now just over a month since I finished treatment and I feel great with energy levels coming back. I'm planning to return to work on the 5 November to. All I would say is try to avoid anyone with an illness when you are vulnerable (neutropenic). Second lot of treatment and a friend came round with an ill infant - this put my in hospital with an infection for a few days. Please don't be scared you'll get through it quicker than you think.

Claire

myfanwy18
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Re: Bone mets - please join in

Hello everyone,
Julie I've just finish six lots of Taxol for BC. It had gone to an ovary so I had to have a hysterectomy first. The BC had got into some abdominal nodes and liver apparently. However the scan after treatment showed it was never in my liver and all the nodes were so small they weren't worried about them. I am now on Armidex. Taxol seems to work very well so hopefully it will be the same for you. My bone mets also improved to and I'm also on bone strenghener. I found the treatment very doable, slight side effects although it knocked my blood a bit. It's now just over a month since I finished treatment and I feel great with energy levels coming back. I'm planning to return to work on the 5 November to. All I would say is try to avoid anyone with an illness when you are vulnerable (neutropenic). Second lot of treatment and a friend came round with an ill infant - this put my in hospital with an infection for a few days. Please don't be scared you'll get through it quicker than you think.

Claire

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Hi there everyone, not been on for a little one.
I found out recently from a pet scan at the royal marsden that I still have substantial liver lesions and a lump they are watching under my other arm. Also that I have the start of bone mets to left hip, top and bottom of spine and my breastbone.
I was due to have treatment last week but no oncologists turned up for the meeting the Friday before to discuss my case, so should have gone to meeting again Friday just gone, and am awaiting to see the oncologist Monday, followed by starting chemo on Taxal, bone strengthener, and avastin if they can get it funded here.
I'm a little scared to say the least, but remain positive.

Hope all you girlies are doing ok?

Love,

Julie xxxxxxxxx
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Chrisp1e - I put a post in employment matters on pensions which you shoudl have alook at - I won't repeat it here but it might help you pension wise.
Otherwise - me update. Just started cycle 2 of peachy pills - 4 doses down! - on reduced rate of 1950 twice. I was on 2500 but the tiredness was getting worse, and for a while now I think due to general cancner fatigue / fed up ness, my longest day was 10 / 12 hours, so losing half of that didn't give me much quality. Hopefully the reduction will make a difference.
After 2nd lot of rads to different area of back I'm now off morphine!! Don't know how long, I am getting twinges saying 'go on, take it' but I'm resisting and using heat. Apparently according to my Macmillan nurse this is quite unusual to get off completely so I'm quite pleased with myself, and even more when she said just as she left that I look the best I have for the last year!!
So I'm on a high for now, until my bone scan in November which if it shows progression I'm not sure where we go next - hormones have failed me and I'm HER-. But not thinking abou that!
Nina
Happyfeet
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crisp1e - I am/was a nurse for over 30 years but only had 8 years worth of NHS pension (due to working in industry, abroad etc). I retired last year age 56, when I was diagnosed with bone mets. I managed to get my pension enhanced, not reduced for retiring early due to ill health, and had the lot paid as a lump sum. The RCN were very helpful with advice. It has made a huge difference getting it this way and enables me to tick over with just my DLA coming in.

dawnhc
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Hi Lisa,

It does sound like your mum is dealing with the shock of her diagnosis right now. She needs to get her head round it all and that takes a wee bit of time. I remember the initial shock and how the word cancer to me spelt death everywhere I looked and it was frightening. But I am one of those who has been living with bc for some time now. My initial diagnosis was in 1990, with a few recurrences! then in 2002 I was diagnosed with extensive bone mets in my skull, ribs, collarbone, all spine, pelvis, hips etc.etc.!!!! But most of these past 10 years I have lived a reasonably normal life, have gone on working (admittedly my own business) and even though I am past your mums age (just) at 67 I am still working. I do have problems with pain control but we are working on that :). I hope that what I have told you can you give you and your mum some hope that once she starts the radiotherapy to help with the pain and then probably one of the bisphosphonates to control the bone mets, she will started to feel a bit better. I am sure your support will mean so much to her as she begins to come to terms with what is happening.

Dawn
xx

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Hi evweryone.
Golightly - I too am a nurse and it's been a hard decision to retire at 59. You've stated exactly how I feel - physically and mentally unable to carry on. I work in community now as a diabetes nurse so it's not like in the wards where the work is heavy, but I just feel I can't do it any more. I've been fighting bc for 12 years now and I'm tired. I will have a pension but it won't be that much as I only have 10 years' service. But then you always manage somehow.
Lisa - my heart goes out to you and your mum. You just don't know what to think or how to feel when you get your diagnosis and life suddenly becomes so uncertain. Perhaps your mum feels you are too close to the situation to talk to you about it and she's probably trying to deal with it in her own way just now. When she's ready maybe she'll be willing to speak to her GP or Breast Care Nurse.
Sorry to hear about your spread Thumbie.
Regards to all.
Thumbie
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Thanks to all for support after my dx of spread. xxxxxx

Thumbie
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Hi Lisa, your mum must be going through very difficult feelings and fears at the moment. I think I can speak for others, as well as myself, when I say that it is very hard between diagnosis and the time when the treatment plan is settled and started. Your mum may have had the double whammy of being apparently healthy one day and finding out she has secondary cancer the next. My diagnosis of secondary cancer (mets in hip and spine) followed 6 years after my initial dx with BC. It was a shock but a known possibility. I think and hope your mum will feel better once the treatment gets fully started.
I had counselling a few years ago and I am fairly confident that that would be an option for your mum, should she want to talk everything through with a 'compassionate stranger'. This forum is brilliant too, as many ladies on here are living well with secondary cancer. There is a breast cancer care helpline as well which either your mum or any family member could use to get support and questions answered. You could also approach your GP for support and a referral for counselling for yourself. It is very hard being a relative and seeing a loved one suffering.
I wonder if your mum is in pain at the moment. Pain can drag a person down, and we don't need to suffer it. Her GP or breast care nurse will be able to advise her about effective pain relief.
Your mum is very lucky to have you.
Wishing you all the very best.

nicky08
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Hi Lisa
It is a very scary time when you get a secondary diagnosis, wherever it has spread to, so we do all know how you Mum must be feeling right now, and also you and the family. From your post I think her diagnosis was primary BC and secondary at the same time? This is even more of a shock (I would think) as you are dealing with something completely new all at once. There are several ladies on here who have had the same diagnosis from the start so they may be able to help more. My bone mets were dx nearly 5 years after my primary but I still remember the whole shock of it all as I hadn't had any symptoms. One thing I think we all found though was once a treatment plan was in place we felt a bit more in control and able to cope with the situation. A lot of us also found the support and knowledge on this forum really helpful and you soon realise you are not on your own. You may want to read back over some of the posts, at one point there were over 100 different women posting on this particular thread so you can see how your Mum is not alone and also the various treatments we all have. Obviously some women have more pain, some (like me at the moment) no pain whatsoever and we are all at different stages, some over 10 years from diagnosis.
I hope this helps, and maybe your Mum would want to read this when she is ready to ask her own questions? Also I'm assuming she will have an appointment with her oncologist to discuss her whole treatment plan, rather than only seeing her radiologist, and she may find it easier to cope once she knows how she will be treated.
Good luck and come back to ask any other questions, we are a helpful and friendly bunch 🙂
Nicky

Lisalauren
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Hello to you all
My mother was DX with BC and bone mets to her L4, thigh and skull just 3 weeks ago. Since being DX she seems very low , does not want to eat much and hardly leaves her bedroom. She has been taking Arimedex for 9 days now and tomorrow has her initial meeting for her radiology course . Mum is 65 and until today was extremely active always happy , always wanting to see friends and now she is not the person I know.This makes me so so sad , I cry for her most of the day. Is there anyone out there nearer the same age as my mother who can give us some hope.......
Lisa
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Hi guys, I'm really interested in your posts re work. I retired as a nurse because I couldn't cope physically or mentally! I have never regretted it because I have a young family and my very scarce energy is all for them and my husband. I'm very sleepy in the afternoon and drop off watching murder she wrote! Haha that's sad! I have a very full life but I'm not stressed or overwhelmed. I'm sure some people would rather work, or dont financially feel like they can give up. Im luckily to have pension etc .
Saw orthopeadic surgeon today. Referring me to a specialist centre in middlesex because tumour very deepand extensive in left hip and neck of femur. A bit sad he can't help but good to be referred! Well maybe they can help, or not!
Have a wonderful weekend. I'm off to the wye valley to see my cousins! Cant wait! Xxxxxx
dawnhc
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Like you Liz I did just hate the thought of being a regular pill popper but when you get to the max on paracetamol and a few other things thrown in and your pain levels can still be described as 10/10 you know you can't live like that! I am now on what I suspect is a high load of heavy meds and have called halt when it puts me to sleep for much of the day. My oncs and pain team are quite trusting and give me a degree of flexibility in how much I take and a few options (mix & match if you like LOL) The problem is the type of pain and where it affects me tends to vary for a couple of weeks at a time. I am still not sure what to do about the suggestion to have an intrethecal infusion device because it sounds a bit scary. I would have to be treated at a different hospital for that as the Marsden don't do it. The huge advantage of it would be that it would mean a much lower dose of opiates to get the same control over the pain - and obviously therefore the chance to increase the dosage without so much side effects. I am still waiting for an appointment at Kings College Hospital to explore it further.

Do make sure you get your pain under control with what it takes - it wears you down after a while if the pain is constant.

Dawn
xx

lizcat
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Thumbie - very sorry to hear about the spread but hopefully the rads will get rid of the pain. I know what you mean about the positive part of your organs being clear. That was exactly how I felt the other week when they found the spread in my spine and hip as I had convinced myself it was in my liver etc! The pain/ache I'm getting is deffo getting a bit worse as I'm needing more painkillers each day and can't always get comfortable. Mentioned it today when I was at hospital for my zometa and the nurse said there is no point in me being in pain and I should take paracetamol 4 times a day and codeine twice a day. It just goes against the grain to take painkillers.....funny old world!!

Liz

vercors
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I have been without internet for two weeks. I became a lurker as I still received the email notifications on my iPad. I don't like typing on a digital keyboard.
I see there has been a lot of activity.
Thumbie, sorry that you have more spread; but I understand that you are relieved it hasn't gone to any organs. This is currently my greatest fear.
Claire, it took me a good 6 weeks after chemo to get some of my energy back. I think that I recovered quickly because I took a break between chemo and radiotherapy. I was in really good form when I started my 25 rads, consequently I wasn't very tired at the end of it. I was driving to work in the morning, radiotherapy mid afternoon and going straight home for a rest. Those treatment do take a lot out of us. For the next 3 weeks it is rest, rest, rest. Hopefully you will get better. If not ask your Gp for an extension.
Val and LemonGrover happy your are both feeling better.

swanie
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Hi thumbie
Ba news re: the spread but great attitude. The is a lesson there Ii think.
Dug out my SAD light box and ate my porridge in a blaze of sunlight this morning. Feel so much brighter.
Best wishes - Jacqui

Thumbie
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Hi all,
Well, bone scan results show spread up my hip, so that is probably the source of the pain in my hip and leg. It's another blast of radiotherapy for me to try to sort out the pain. Maybe change my hormone therapy afterwards. I just hang onto the positive - no sign of anything in my organs.
There is a sense of something inexorable taking over. It's humbling and scary. I'm going to concentrate very hard on making sure I am pain free and appreciate life with the extra edge this gives everything.
Best wishes to all xxxxxxx

swanie
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Hello All
thank you for your thoughts. Val, Chrispe and Nicky It is difficult to decide what to do. My job as a podiatrist is quite tough on the back and involves dealing with people all day whoa are often complaining about aches and pains i.e.one lady was complaining about having to take bisphosphates once a week - I had to bite my tongue and resist saying lucky you I take the darned things every day...grrrr. It all gets emotionally wearing as well as physically.
i do feel much brighter today I guess we all have moments of gloom - it was pretty awful weather my way which does not help.
Remember it takes a long time - 6months to a year to get over chemo Claire. Is it possible for you to return to work on a staged returned maybe alternate days or shorter days.
Heigh ho onward and upward - Take care all of you
Jacqui

swanie
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Hello All
thank you for your thoughts. Val, Chrispe and Nicky It is difficult to decide what to do. My job as a podiatrist is quite tough on the back and involves dealing with people all day whoa are often complaining about aches and pains i.e.one lady was complaining about having to take bisphosphates once a week - I had to bite my tongue and resist saying lucky you I take the darned things every day...grrrr. It all gets emotionally wearing as well as physically.
i do feel much brighter today I guess we all have moments of gloom - it was pretty awful weather my way which does not help.
Remember it takes a long time - 6months to a year to get over chemo Claire. Is it possible for you to return to work on a staged returned maybe alternate days or shorter days.
Heigh ho onward and upward - Take care all of you
Jacqui

myfanwy18
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Hello everyone,
Very interesting reading you posts about fatigue and working. I finished chemo in September and am finding my energy levels just don't seem to be getting back to what they were. Also I plan on returning to work on the 5 November but am worried about whether I can get up so early as to get to work for nine, walk to work, spend several hours working and walk home again. At the moment it feels like planning a trip up a mountain.
Claire

nicky08
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Hi ladies, as some of you have already said there is so much support on here and such a lot of experiences that there's always one of us able to help. Luckily at the moment I am pain free (and I do count myself very lucky) but take on board everything that is said about hip replacements as who knows in the future what I'll need.
As to retiring or cutting down the workload I think it's right if it's what you want to do, and can do. I worked part time before my secondary dx in a fairly intense role. I wanted to continue some form of normality whilst going through chemo, so much so that my only 'holidays' taken during that time were the days off when I felt rough after chemo. It wasn't until my job was made redundant about 2 years after finishing chemo that I had my meltdown! I really questioned how long I'd be here for, how did I want to spend that time, did I want to work at all? So I took some time off (which I called my 'chemo' break) during which time OH was also made redundant, although lucky enough to have had enough of a settlement not to cause me any more stress. We spent last summer being off work together, for the first time in our married life (over 25 years) and really enjoyed each others company before the stress started to creep back in as the money started to creep out LOL. Anyway, he got a job and I went back to being at home on my own for a while, both daughters being at uni. I have now got back into the frame of mind of wanting a job but very part time and no stress so I'm not even looking at the type of work I did before but am hopefully starting something in the next few weeks. I certainly feel a lot more anxious these days and try to avoid stressful situations as I really can't deal with them anymore. It is definitely down to the individual but I think a lot of us have a real wake up call at some point along the way when we make some changes. It's also not unusual to feel down or fed up about what life has dealt us, who wouldn't? But we do all seem to pick up again and a lot of this is down to this forum where we can express ourselves so freely knowing that there's a sympathetic ear who DOES understand 🙂
Good luck with any decision making that has to be done and hoping that anyone feeling down at the moment soon picks up.
Nicky x

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Katie. - I couldn't help laughing at your dream. It is similar to one I had recently. I was on a plane but it had to land cos of bad weather. It landed at the seaside so that we could all get off. When I looked at it it had a mast and sails. The pilot and crew were going to fix it and they gave us tranquillisers and painkillers! Hope you have a good day teaching. I was a teacher a long time ago and hated it. Went into nursing when I was 45 and my bc was diagnosed half way through my training. I went back after my surgery and treatment and finished my course. I then worked full time for nearly 10 years until my recurrence this year. Also did my degree while working full time. But this time the treatment has taken so much out of me and my body is telling me it's time to stop. I opened my knitting bag today but then zipped it right back up again. Maybe tomorrow.
Val - you've just convinced me that I've made the right decision to retire. I am tired and feel I just can't go on doing everything I did before. It will take a huge amount of pressure off me.
scottishlass
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Hi Swanie/Jacqui, I decided I had to give up work when I found out I had bone mets. It was the best decision I ever made and I do not regret it for an instance. I know this would not suit everyone. I still had a mortgage and debts to pay and my husband ended up off sick too with depression and he had to retire early too ( He is also bi polar ). I did not know anything about benefits. I did get Incapacity benefit but I had not even heard of DLA. I claimed it and that in itself has made a HUGE difference to my mental state and the worries of bill to pay has vanished. It was a very difficut periiod for us both. The same year my mother in law died very suddenly in the January and while we were holidaying in Italy in May ( we had driven there!) my father in law died very suddenly after he caught C Diff in hospital. So my poor husband was trying to cope with all this while his poor wife was undergoing all these horrible tests. I just wanted to tell you I especially do not miss all the stress of work, the juggling of plates, the rushing around trying to be superwoman as that is the way I worked.....always ahead of myself, planning the meals for the rest of the family while I worked shifts and my husband did too and we were often like ships passing in the night. Hope this helps and does not hinder in your decision making. Hugs. Val

swanie
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Hi Ladies
I hope you are all recovering from you ops. I am lucky - I am no where near the stage you are at. However... I do feel so tired all the time. When I get in from work I am bone weary (oppps pun not intented). I just did not expect this with my few little mets - is this normal and to be expected. It has got to the point where I am thinking of reducing my work load. I have already done this to a small extent.
I am feeling a little afraid -I just do not know what is in store for me. I met a ladie who was where I am now about a year ago - she is now in a wheel chair. It really hit home. Also concerned about the progressio of my lung mets.
Sorry just feeling a bit down and lonely at the moment
thanks Jacqui

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Wow! Thumbie, val, izmark, everyone thank you so much. I have a much more positive attitude about hip replacement now and I'm more open to this option, if he says it's an option. this is a great help to me! I agree with Ellisb and mildred, it's so great that you are so eloquent in your posts....what a bunch of great people we are!
I am still in a lot of pain with left hip, the same as val, all down thigh, groin etc. I think if they can do it, considering the state the rest of my pelvis is in, I will go for it. Better mobility and less pain relief would really be lovely for me. My spine is also quite painful, but maybe they could give that a zap. Thank you thank you! Love to all xxx
EllisB
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Val - Mildred is absolutely right - what an inspiring endorsement for a hip op!! Haven't posted for a while but have been keeping up to date reading everyone's messages. Some of you know just the right thing to say in reply to someone with problems - thank goodness for you!
Chris
x

Mildred1602
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Val - what a wonderful post! Inspiring reading for anyone facing a hip replacement.
Katie2002
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Hello everyone,
Just taking a break from knitting to say 'hello to you all'. Think I am becomming an knitting addict!!! I am however trying to diversify my day by helping prepare for the school Christmas Fair and as well as that today I have drawn 5 Vikings and made a cardboard longboat for an art day tomorrow in my class. I am really looking forward to it. No doubt I'll end up covered in paint and snot! I just hope I remember how to teach. I'm hoping it's like riding a bike.
Itiswell - how are you doing now the drains have been taken out? I felt so much better not carrying around my bag.
Na7asha - how are you doing? Hopefully still well and no side effects x
Chrisp1e - good for you making the decision to retire. I am the opposite - I am looking to return soon. I am still having weird dreams - my latest was wanting to emigrate to Australia but my hubby wouldn't come! The weirdest so far involved us going on honeymoon to Hawaii ( we never actually got on honeymoon) - anyway we got on the plane but the pilot had to make a pit stop in a car park! I desperately needed a wee so got off the plane and found a McDonalds - when I returned the plane was still there but a band had set up outside the plane and was playing to all the passengers. I think it must be a side effect from all these blinking drugs!!!! It's no wonder I am shattered when I wake up.
Ruth - I hope your results were good x
Katy - good luck with it all - sorry I can offer no advice x
Well what did everyone think to Strictly ? Wasn't Lisa Riley amazing? My 6 year old loved Johnny Ball - I think he reminded her of her Grandad! As for Downton - I am beginning to think Bates did it! And why on earth would Tom run back to Downton if he against the English establishment?
Anyway my knitting calls - hugs to you all xxx

Oh - my latest read (the new Kathy Reichs) is so far bc free!!!! Hurrah!!!

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Hi everyone. I haven't posted for a while and it's taken me a while to get through all the unread posts.
Roberts75 - sorry to hear your mum has bone meta. I was diagnosed with bone meta in Jan 2009 and have been on something since then. Also when I was diagnosed with further spread to my lymph glands in my neck in February this year I was commenced on chemotherapy right away.
Qhalitystreet - glad that you're doing well after your hip replacement.
Lizcat - hope you are recovering from the virus.
Scottishlass - glad you are driving again after your hip replacement. It's such a feeling of loss of independence when you are not able to drive. I have great problems asking for help even from OH but I'm going to have to learn. Good luck with your CT on 14th.
Tulip - hope your review goes well. Enjoy your week in Malta.
Birgit - glad you enjoyed your holiday. Hope your back is OK.
Katie2002 - with all of our cancer problems I couldn't help laughing at your book. It reminded me of the DVD I got at an oncology unit. It was for relaxation. When I had to imagine my legs were like dead weights I pulled it out of the player and threw it away. I have been having weird dreams which are so real. I almost phoned to ask for my neighbour cos I thought she had a heart attack. Luckily I asked my son about it first cos I thought he'd told me about it but I must have dreamt it. Glad you're doing well with your knitting. I knit and crochet but can't get motivated at times.
Itiswell - hope you're recovering well from your surgery. That was a brave decision but when I look at the state of my reduction on my healthy boob I wish I had done that too. My scars are always itchy and I have been left with a lump of scar tissue which really annoys me.
Lemongrove - glad your report is better than expected especially as you were without treatment for a time.
I'm on holiday in somerset just now. Have had a bit of a mental meltdown since I came on holiday. Went back to work last week and was unwell after I got home. Being away from everyone has helped me make up my mind about how best to keep fighting my disease. I have decided to retire from work and have lower stress levels to start with. I have been fighting my disease for 12 years and my body doesn't have the strength to continue with all the things I was able to do prior to this latest bout of chemotherapy. I'm now looking forward to spending more time with my daughter and my grandsons and my parents. And my OH too of course
Sorry to anyone I've missed.
scottishlass
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Hello Golightly/Katy, I woulld highly recommend a complete hip replacement. I had a different op a year ago to insert a titanium pin into my femur to help stop my bone from breaking. Unfortunately the top of my femur was fractured during the op ( I was advised that this could happen beforehand). But the titanium pin fractured this year before the top of the femur had healed. The surgeon had hoped that this first op woud last for years.
So I had a complete hip replacement done 7 weeks ago. I have been driving for a week now quite comfortably. Short distances at first but an hours drive the other day when we were all out for the day. I can walk around the house without the aid of crutches but still need 2 crutches when walking outside in case I fall or stumble. I do not want to go back for yet anothr op!
I can get in and out of the bath unaided and go up and down stairs on my own, and get in and out of the bed easily. I no longer need the raised toilet seats, nor the stupid sponge pad the offered for my sofa/chair. I do not need to wear the surgical support stocking ( most exhausting getting them on and off!) I was given a wheelchair which I have been using form time to time. Less so now. But sitll in the boot of the car in I become tired when out shopping. They give you aides to put your socks on and and a long handle shoe horn and a grabber to pick things up when you cannot bend down. I keep forgetting NOT to cross my legs ( shows I am forgetting about the hip operation). My stamina is improved but this could be due to the steroids they put me on when I had no appitite and keep losing weight. But eating and feeling better now.
But MORE important than all is that I have absolutely NO PAIN in my thigh, bum,groin and knee. I had been wearing pain patches (Lidocaine) before the recent op. I don't need them now. I was sent home with new painkillers to add to my normal pain meds. These included Asprin, Paracetamol and Oxynorm. I am off all of these now and just take my normal meds.
It hasnt been easy. I will admit that. I was down at times. Frustrated that I couldn't do whay my head wanted me to do. Ineeded a nap EVERY afternoon. I did need someone around when going for a shower. I had to rely on my husband to do all the chores including the cooking and shopping and cleaning, changing the bed etc. I just couldn't do anything at first. That is hard when you are normally an independant person. At one point I got really down and found myself crying when I was getting ready for bed. Not like me but it lasted a week or more and I found that quite scary.
But here I am 7 weeks later. I was out walking, albeit with 2 crutches today but walking along the costal path which is quite steep and rocky in parts, but with wonderful views, the sun shining, and thinking to myself, well it has been a LONG 7 weeks but I feel great again. Would I recommend a complete hip replacement? You bet I would! Hugs Val

lucinda
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hi boney ladies could you all please support this campaign to promote awareness of secondary breast cancer on Oct 13th
www.thunderclap.it/projects/407-secondary-breast-cancer-day
if the link does not work just google thunderclap secondary breast cancer and you can access that way.please ask as many people as possible to support otherwise it will not go live.

Thumbie
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Hi Katy, I have had a hip replacement too. I had it about this time last year when the pain I was having in my hip, and my reduced mobility, was finally diagnosed as breast cancer mets. It is usually a very successful operation and in my case I made a good recovery. I was able to walk short distances using two elbow crutches by 2 weeks and abandoned crutches altogether by 6 months. Able to drive after 3 months (I had had to give up before the op so was thrilled to get back behind the wheel). I now walk well, with a slight limp when tired, and a bit of difficulty cutting my toenails! I have recently started to get a new pain in my hip, which I know could be spread. I have had a bone scan and CT scan and will get results on Wednesday - a bit scary. But that's by the by as far as the hip replacement is concerned. I am very pleased that I had it, and would have the other hip done if that was indicated. Talk it over with your consultant who will be able to tell you about your individual circumstances, and get back on here for more info if you want it. If you go ahead we will be able to give you lots of tips about recovery! One thing I have realised since having the op and talking with others is that everyone is different but we can all support each other. Good luck. Love Ruth. By the way, it is usual to have radiotherapy after the op once you are up and about.

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Hi Katy,
I had a hip replacement in May. I had been having a lot of pain and despite x-rays to see what was going on, radiotherapy for the pain and also heavy duty pain killers, things did not get any better. Finally, my hip fractured spontaneously when I rolled over in bed. I was carted off to the hospital and had an emergency hip replacement. So for me, it was not an option. If your orthopaedic chap thinks that you should have it, then go ahead. I was only in hospital for 5 days and they get you up the day after the op. I was seen by the physio every day, and the occupational therapist. My recovery has been steady and I can now walk without a stick indoors, albeit with a slight limp. Pain relief is minimal and I'm a little stiff in the morning, but soon loosen up when walking around.
9 weeks after the op, I went to the USA! Both the orthopod and my oncologist said it was ok - it had been booked weeks before the op, it was my niece's wedding, so I had to go!
Lastly, I worry that the same thing will happen with the other hip and got them to thoroughly check it out. So far, it is fine. Just a little wear and tear, but apparently good for my age...59!
As you say Val has had one recently and she sounds as if she is doing well.
Anyway, that's all. I hope this has helped.
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Hi everyone, I've not posted for ages, just been trying very hard to get on with things. I've been ok, but still on heavy duty pain relief and using crutch to help. Tired all the time and struggling, but ok. So glad to catch up and see that you are all here coping. I wanted to ask about hip replacements, is the general consensus that they are really worth it? I have aconsultation this week with an orthopeadic chap and I'm really wanting some feedback from you ladies, especially val, who I see has been doing really well. I am fearful that it wont be an option, and im worried that my other hip will be affected and i wont be able to walk if i dont have a hip replacement. Thanks ladies, lots of goodthoughts for all of you whatever you are facing xxxxxx Katy
Itiswell
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Thanks everyone for the love,God bless you all real good! @ katie2002, i still have the drains,nurse said she might take them out on monday if drains reduce! cant wait, cant really go out with them dangling on both sides. oh well.. wld stay at home and watch xfactor and strictly. I hope everyone of you beautiful ladies have a lovely weekend too.
Lots of love,Itiswell.

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Aw thanks Tash. Just come back from afternoon tea at a very lovely hotel down the coast. We sat in the sunny garden. It was like something out of Downton as the waiter crossed the lawns bearing our sandwiches scones and pastries. Feeling a lot more chipper now. I would love to see you when we get back.

Ostrich mode is fully switched on!
na7asha
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Sorry I cant comment on either Claire or Happyfeet, but I hope you get reassurrance soon,

Cromercrab - sweetie, I didn't realise you were having a wobble. Why would they send you to the Marsden, thought they had it all covered at UHCW? Good he's still talking of options though, you trust them so I'd go with the flow if you can. Shout if you need a hug when you get back from Norfolk, I can't help much but I could bring cake 🙂 Enjoy the sea and take care. Lots of love xxx
myfanwy18
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Hello everyone,
Been thinking about what my ONC said last week, it always takes me a while before it sinks in, whether good news or bad. Firstly, I presume it is good news that BC didn't spread to my liver bearing in mind it was in abdominal lymph nodes. Secondly why did he ask me if I wanted to discontinue with zoly. I thought once you had bone mets you would be on this drug for life - he said my bones were very dense now? Also he said "no fluid around stomach", this worried me as I wonder what they were expecting. He told me liver clear and working normally, lungs fine and lymph nodes now so small as not to worry them. Do you think they are telling me the whole truth or am I just being paranoid?
Claire x

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Good afternoon. Just checking in. Seem to be tired a lot which is frustrating. Good news is that I'm in Cromer and relaxing in the flat looking at the sea. I'm going to try to go out this afternoon. Had ct scan last su day and see onc Thursday and I'm trying to be an ostrich but I fear spread......
8-(. Chemo will be on the cards for me I fear and onc is talking about the Marsden. Feel a little wobbly and can't really talk to OH about it.
Happyfeet
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Hi everyone, have been following this thread when I can but the site is so tedious these days. Please can I ask for some comments. I am on my 14th cycle of Capecitabine, 1800mg twice daily. Tumour markers have reduced to normal range but bone and CT scans 3 months ago showed progression in ribs and spine (already extensive thru bones), nothing elsewhere. Side effects as expected except am starting to lose my nails again, toenails I can handle but fingernails just so difficult to cope with. Oncologist just said stop the chemo then, said dose reduction wouldn't make any difference so the choice was mine - no nails or ...... He said I was running out of options for treatment and that Eribulin would be my last choice. I don't quite understand this from what I read about others' experiences. I'm not willing to have IV chemo again at the moment though anyway, if I do get further spread to liver etc what is left?
I have little faith in my team so am looking at transferring elsewhere. Already had 2nd opinion last year at The Marsden but a long way for me to travel. Anyone at Addenbrookes or Peterborough?
I wonder if Vit D and calcium supplements would help or B12? Has anyone else had the nail problems? Off for yet another CT scan now, then back in the waiting room for 3 weeks.Best wishes to everyone x

nicky08
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LG that does sound good news and must put your mind at rest knowing how worried you were earlier in the year. Let's hope cap. Kicks them into touch. Enjoy your week off the tablets and I hope the champers went down a treat. We were out last night so will be catching up with Strictly tonight, it's the only reality show we watch and it is so interesting seeing how the dancers come on, or not in some cases 😉
Val, all of your news sounds good as well, after such a glowing report I hope you realise how far you've come since your op. did the men get out for their walk? And did you enjoy your day out as well, kindling or knitting whilst you wait? We had awful weather here yesterday evening and for the first time in ages I was doing the driving. Not a nice trip at all and I kept saying how sunny it was meant to be today,which of course no one believed. But, lo and behold, it's a beautiful day here in Hampshire so OH and I should get out for our walk a bit after, the first one in ages.
Hope all you boney ladies have a good weekend whether recovering from ops, dealing with pain or 'just' coping with secondaries.
Nicky x

Lemongrove
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Linda, sorry pain from the sciatica is getting worse. Could they tweek your pain relief? Think I'm controlling the SE's from the Cap a bit better now, thanks to your suggestion. Completely understand about the Pimms. They do vary, and you do need to keep trying them. The good thing I find, is that if you have enough of them, you cease to notice.
Dawn, thank you for the encouragement - appreciated. My next scan will be after I complete the 3rd cycle of Cap. The scan I had on the 19th September will be used as a benchmark to evaluate how well the Cap is working, and whether the dose needs adjusting.

dawnhc
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That sounds pretty good lemongrove. essentially almost a year without appropriate treatment and not too much further spread so let's hope that now you are on the right treatment you get really good results. I must say I have been amazed that since my bone mets were diagnosed in 2002, after chemo, bisphosphonates and the following year herceptin I have had really good control until the last couple of years. The problems since then have been minor apart from pain problems. Have they said when they will scan again to check? Enjoy the champers - I'm just about to turn the dvd on and watch Strictly but minus the champagne - don't think I could risk that!

Dawn
xx

lucinda
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LG So pleased results were better than you expected.Went for my appointment with onc 2 weeks ago and asked for a copy of my last mri results, it came this morning and seeing the words "exstensive bone mets in spine and degenarative disease"a lttle bit scary.It was nothing I did not already know and explains .I actually don't have any acute back pain,just a constant dull ache.My main problem is constant sciatica pain down both legs and now pain in my left heel which has made walking difficult the last 2 days.
Enjoy the champagne,I have been away for a couple of days in new forest and enjoyed the pimms last time I stayed at the hotel in the summer, so had to make sure they were still the same standard.
Hope treatment goes well next month.

Val pleased you are doing so well and hope you enjoyed your day out.

Good night all xx

Lemongrove
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Little bit pleased today. Got a copy of radiologists report for a CT taken on the 19th March 2012. Was dreading the results, as I've essentially been without appropriate treatment (other than Bondronat), since last November, because the Prof continued to try other endocrine therapies, when in fact they were completely pointless (because my receptor had changed from ER+ to Her2 +). But it turns out the report was not as bad as I suspected. The nodes in my chest have not got any bigger; the met outside my lung (which apparently encroaches on my para aorta), has also shrunk; the suspectedmet at my T12 vertabrae has not changed (and they are still unsure if it is a met), and my skull mets (which were treated with Cyberknife) have healed over with healthy tissue. The only downside is that I have spread to my L5 vertabrae. So although not a glowing report, it's not as bad as it could have been.
The other reason for my pleasure is that I have reached the end of my first cycle of cap, and will now have a whole 7 days before the next cycle starts (so I'm watching Strictly Come dancing with a glass of champagne to celebrate). Will be having my second infusion of Herceptin and Zometa next week, but don't mind that so much. Hopefully, now I'm on appropriate meds, the next scan will be much better.

dawnhc
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Hi Val, your news does sound great. You have done so well after all it is just 6 weeks since the op as you say. How fantastic that he has said it will last your lifetime! Here's hoping you will feel like a new person once you are really ready to throw away the props :). What has your weather been like today for your 'day out'. Down here it is quite wet now.

I am envying some of you getting going on your knitting. I used to knit & crochet a lot but now if I try to do anything like that I suffer badly with my hands and fingers going into spasm. It's a shame 'cos I would have liked to have been knitting for the twins. Never mind I have really enjoyed myself buying up lots of goodies for them even though my daughter tells me off!

My latest buy has been a new mobility scooter so I can terrorise the neighbourhood. Do any of you use one of these? I don't need to use it all the time but it is so frustrating if I want to go to shopping malls or larger towns because I just can't manage that amount on my feet. It means that if OH & I want to go out for the day that I can do it without worrying about 'overdoing' it. I found a really lovely one that is quite small and lightweight but the battery life on full charge is good - about 12miles and as I am quite lightweight I should get the best out of it.

Debs I will send you pm to see if that comes through ok for you. Bear with the site a bit longer - they are having a lot of problems with it and hopefully in time things will get better even if we have to wait for them to totally change it again!!!

Another change of subject: Herceptin & Muga scans. How frequently do you all have muga scans? Mine have been 6-monthly for some time now but at my last clinic appointment I told the onc I really hate having them and what chance of extending the interval to a year. She went and had a word with the consultant and he has agreed to let me have them annually. It's always worth asking if you feel like I do about them :).

Dawn
xx