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Bone mets - please join in

Helen_12
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Re: Bone mets - please join in

Thanks sue , could you tell me who you got your insurance with and roughly how much I can expect to pay to get insurance to cover me please many thanks Helen x

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Re: Bone mets - please join in

Hello Helen
Personally, I wouldn't want to travel aborad without cover for my secondaries. I had a spot of spinal compression that came on quite quickly from my bone mets and if that had happened on a 2-week holiday, I would have possibly needed treatment abroad. Similarly if you have lung mets, you can pick up a chest infection pretty easily and would then be in an argument as to whether it is secondary related or not. Even falling over and breaking a leg could get into a discussion about whether those bones are affected by your dx.
Sue
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Re: Bone mets - please join in

Hello Nina
Thanks for your reply. I saw my oncologist today and he said I was unlikely to ever be able to do without some sort of analgesia and said it was really important to take sufficient meds to be as active and pain free as possible, so I am back on my Tapentadol and will increase the dose, and chat to my GP about it. On the plus side, my cancer markers have halved since I started Letrozole and he is pleased with my response to treatment. Further bone and CT scans in August and then hopefully an OK to go on holiday to Canada at the ends of September. Good wishes to all of you out there. Ali
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Re: Bone mets - please join in

Hi Helen
Try Eurotunnel insurance.(look at the travel insurance thread on this site as well). They have said to me that as long as I have a doctor's letter saying I am fit to travel, they can sell me and my husband an annual world-wide policy, including USA, for about £118. Haven't had time to check all the small print, but it sounds good, even when i said to the bloke on the phone, but i have secondary bone mets, he said all i needed was a Dr's letter to say i was fit to travel.
Hope this helps
na7asha
Member

Re: Bone mets - please join in

Hello ladies, another boney lady that hasn't been on much lately. Switched laptops and it's taken me a while to get around to logging back in.
I do have news, DX last July with secondaries and after trying a few different treatments that didn't work was put on Taxol. This is working, they're really pleased with me and I have no significant active disease. Pretty amazing.
I hope this news give you hope, honestly sometimes things work out ok for a bit. I know it's not forever but I'll take that.
Hope everyone is doing OK. Massive hugs xxx
Helen_12
Member

Re: Bone mets - please join in

Hi all ,I've not posted for a while and have a couple of questions , my oncologist has said that he will have denosumab available to him in next couple of months and he would like me to come off my tablets and go on this every 3 weeks ,are many of you ladies on this and if so has it got good results and better than bisphonates ? And also going to Greece next month and have travel insurance with my bank account which will cover me for everything else except for anything cancer related will this be sufficient as I've not been abroad since my secondary dx would really appreciate any views on both questions many thanks , and hugs to all you lovely bony ladies ,helenx

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Re: Bone mets - please join in

Hi to all the bone mets girls. Like a few of you, have not posted for a while. Welcome to all the newbies, and sorry that you had to join us, but you will get a lot of support and helpful advice on here.

Had a pretty rough time in the last few months, just a combination of 'coming to terms with it all', and feeling rubbishy on my treatment. Then a lot of complete 'mess-ups' with appointments, b/ts etc. etc. and I was on the verge of saying 'let's call it a day with all the treatments'. But I saw the BCN and we had a long chat. I am now on Denosumab, but becasue of a reaction, have to have it as a day patient, with an iv of steroids/piriton and then a wait in the department for 4 hours! So every 4 weeks, I can look forwards to a day in hospital. Last time was bearable as I got chatting to a nice lady in the department, and they gave me a very comfortable chair to lie down in. I can't sit for too long because of lower back pain. Mind you, when I came out I was half asleep, but all jittery from the huge dose of steroids. Still, the last CT scan showed a slight improvement, so the Letrozole is doing its job.

We had a lovely winter break in the Canaries, and I managed to get good insurance via my Bank . I did enquire several times whether it was correct that they would insure me with secondaries , but they said yes, as long as I am not awaiting surgery, are having chemo, or am on strong painkillers. Cost me just £110 extra for an annual insurance, the basic cost is free with my card and this insures both of us - so a pretty good deal I thought. Just planning the next trip, so have something to look forward to and try and do it whilst I can still travel without too much discomfort.

Take care everyone, and I will try and catch up with all the posts I missed.
Buffy3
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Re: Bone mets - please join in

Hi everyone, especially any new people.
I thought I'd share a rather embarassing incident which occurred at the hospital carpark. Can I still blame chemo after3 montha. Anyway had just finished my return to work meeting and had a yoga class booked, so thought I see my bcn too. Found a space and went into the hospital.
On returning I had a ticket, bright yellow and stuck to my windscreen. I had not parked in a bay but had also managed to block someone else in. I feel so bad as they may have had a chemo treatment. Ive a feeling they had to move my car to get the other one out.
I went to apologise. Just wasnt thinking at all. I guess the parking attendents earned their money by shifting my clio! They charge enough.
Oh well just blame it on chemo brain still.
Have a good day.
Mel xx
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Hi Ali - 'Welcome'...
I think I'm a bit like you in terms of bone mets - I've been zapped from mid thoracic to sacrum too, nearly a year ago. It took a while to take total effect - kept getting a bit better as time went by. Like you I wanted off strong pain killers - I was on hydro morphine and progabalin (? not sure of name still - the nerve pain). I did reduce my morphine from 6 to 2 twice daily and wanted to stop all together but my pain man at the hospice put it to me I'd see it as a failure if I had to start again - perceptive man that he is - knows me better than I do!
I have recently been upping and downing my morphine as required. If I'm having a more active day I go up a day before and after, if I'm having lazy days I keep it low. I know realise its pain prevention not cure, and take it whether I feel I need it or not. Hard to get your head round I know but has to be done.
Activity wise, you have to walk before you can run! Do what you can and be grateful for that! My husband would be laughing hysterically if he read this - all he preaches to me and I try hard to do but struggle with!

Nina
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Hi everyone. I am another newbie. This bone mets forum has really inspired me to join.
I am 59 and was diagnosed with spinal mets in January affecting thoracic, lumbar and sacral vertebrae. I had been into acute muscle spasm, hardly able to stand for most of December and finally got an MRI to diagnose a slightly collapsed T12 and the rest of the spine mets. I had lobular BC in 2004, a mastectomy and reconstruction, and 2 lymph glands were affected. I had Tamoxifen for the standard 5 years and then stopped everything. I have been very well up until now. Now, I am on Letrozole, and Zometa infusions monthly. I had one big dose of radiotherapy from T11 to the sacrum and my pain is much better, but not gone yet.
I’d like to ask others with similar mets what sort of pain killers they have found most effective. I am on Naproxen 500 mgs twice a day and I was on Tapentadol (an opiate analgesia) but have weaned myself off and I am trying to control the pain with Co-codamol. Does the pain go away altogether or I am expecting too much. I am more mobile and active and itching to get out into the garden but by the end of the day or after a 10 minute walk to the shops and back I have to lie down. Any tips or advice will be gratefully received.
Many thanks Ali
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Hello Plink
Sorry you have had to join us. I am 48, but have a daughter aged 6, so feel far to young for these life-changing events.
I too have a couple of titanium rods - replacing T12, which is the next one up from L1. I had my surgery in November. I too can walk without crutches, but find standing/walking for too long hurts, so I still take my crutches on the school run (having driven to the school). But I can walk around the house fine without (and even managed to leave a pair at my parents' house 300 miles from home). Driving is getting easier too (at one point I was thinking of getting an automatic to save on clutch usage). My main limit is lifting things more than a couple of kilos and getting things out of low cupboards, but I am getting better at those still too. I have bought myself a shouting-stick, so I may sometimes just take that and sit on it in the playground. It will defintitely be useful for taking my daughter to the woods.
Letrozole didn't work well for me, so I am on Capecitabane (chemo tablets), which make me tired, but so far (5 cycles in) are bearable).
Sue
lizcat
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Re: Bone mets - please join in

I haven't been on here for ages so will be catching up gradually. Sorry to see new ladies here but welcome along and I hope you have found penty of help and advice here. I only post when I'm the laptop as the kindle is a long drawn out job... For those of you who don't know me, I was diagnosed with primary and secondary bone mets nearly 6 yrs ago and remained stable until early this year. I was then changed on to the everolimus/exemestane combo but felt rubbish and blamed the pills although things did settle down a bit. Then 10 days ago I ended up in hospital with acute appendicitis and had to have my appendix out. I have been taken off the ever/ex combo in the meantime while I recover as it blasts your immune system and see oncologist tomorrow to plan when to start tablets again - be it the same ones or different ones. My feelings are that the appendix has been at the root of me feeling off for a few months now. I'm still feeling tired and a bit sore from the op but that is to be expected. Just shows not everything is cancer!!

I will catch up and contribute more once I am up and about more.

Keep as well as possible girls, Liz x

ponsmuir
Member

Re: Bone mets - please join in

Hello Plink,
You are certainly not alone going through this. I joined this wonderfully supportive group in January 2013 having been through an almost identical experience to yours (collapse of L1, spinal cord compression, extensive bone mets etc) over Christmas and New Year. My bones are too 'moth eaten' for rods but the neurosurgeon says my spine is stabilising and surgery may not be needed anyway if this continues.

The powerful golden Letrozole pill is proving effective. Yes, the hardest thing is living with the uncertainty but I suppose that taking certainty for granted is foolhardy anyway. Car accidents, strokes, those brave young servicemen at Headley Court - so many people have life changing events. And as there is treatment for us, there is hope and plenty of support.
Cyber hugs and love xx
belinda
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Re: Bone mets - please join in

Hi Plink and anyone else recently diagnosed. Like Mel I was diagnosed with a matching double whammy, bc and secondaries in my early 40's. Ten years on and I'm still here and I'm feeling well. Hormonal and chemo treatment has given me years of stability at times. You will find lots of support here.
x
Buffy3
Member

Re: Bone mets - please join in

Hi Plink,
I was diagnosed with the double whammy bc+secondaries back in July 2012. My main issue in terms of pain was my hip which I had rads to. This is mow pain free. I have zoldex, zometa and letrozole. I am 42, like you it has turned my life upside down. I also had chemo which finished in Feb.
Anyway cyberhugs heading your way. You will find the ladies very suppportive and knowlegdable too.
Lots of love
Mel
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Hello all,
I’m a newbie here but have been reading your helpful posts for sometime. I was dx with primary bc in 2006, only to have it return in Aug 2012, after years of getting on with my life! I never imagined it would come back. I’m only 41 and it feels like my world has been turned upside down. I have secondaries mainly in my bones - my spine, pelvis - also some in chest wall and a bit in my lung. I initially had spinal cord compression, which after radiotherapy helped lots, but my L1 vertebrae completely collapsed and caused more cord compression. Luckily I had an operation to have titanium rods,and screws inserted in my spine and since then I have been off all painkillers and able to walk without crutches. Now on letrazole, zometa, herceptin and zoladex.
Your posts have been really comforting for me, sometimes it feels like I’m all alone going through this. Although I feel tons better than last year, I can’t help thinking about what will happen next. It’s hard to stay positive sometimes.
xx
scottishlass
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Dawn, Yes I have the same problem with the stooping. I catch sight of myself in the mirror and I looked very stooped, round shouldered and bent. My muscles in my back are also painful and I can feel them working overtime. If I leave the house I can leave quite spritely but even if just out for a short time when I return hime it takes great effort to get out of the car and climb the few steps to the front door and I cannot wait ti get indoors and lie horizontally. Is this anything like you Dawn?
I too am uncertain what to do about it. I try to "stand tall" and try to improve my posture when I am indoors. The pain is not like bone pain and to me is more like muscle pain. I do have one muscle missing from my back on one side where I had my LD Flap done all those years ago. I decided to increase my MST by jusy one 10mg tablet in the day. Not at night as I am fine when in bed.
I just long to be able to go out and walk without discomfort. I cannot walk very far at all without a rest and tire easily. The nurse told me it can take 6 weeks to get the chemo out of the system. I keep hoping for better days and to be able to go off on a restful holiday somewhere but cannot see it happening any day soon.
My Dad had a fall in the park Dawn. Then he had a UTI which caused confusion. I had to take him to the A and E on Monday and was there with him for hours while they carried out tests. My back was killing me then. I did wonder if my Dad fancied sitting on the hard chair so that I coud have a lie down on the bed!!!! Then it was the Cardiologist appointment on Thursday with him. He isn't in hospital and is back home in his own place but that is worrying too. He wants to do things for himself but to be honest his judgement is not good and I can see serious problems arising as things will eventually get worse and at the moment I am not able to help out much. I wish I could do more for him but my OH is caring for me as it is.
LOve to all boney ladies reading this. Will look in to see if you reply later Dawn. From Val

dawnhc
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Re: Bone mets - please join in

Val it's lovely to hear from you again but boy do you have more than your fair share of problems! I do hope dad is improving - has he been kept in hospital - or just in and out of A&E? It must be so wearing for you when you are struggling yourself.

I was beginning to feel a bit disappointed with my pump as the pain has significantly worsened over the last 3 weeks. But I went for my refill on Wednesday and chatted to the pain consultant and she agrees that I am probably playing catchup just now - my pain is worsening and we still have not got the dosage right yet - still upping it slowly till we find what is right for me. So the morphine/bupivacaine was increased from 8mg to 10mg and she has programmed me 8 boosts in 24hrs with a 2hr lock out. So that works out at almost 50% increase if I were to need all 8 boosts. With that number of boosts I won't be getting anxious about using up my options over 24hrs. I think things are improving (have fingers crossed while I type LOL)
On Thursday I had an MRI scan - the team that operate that machine are so caring and patient at the Marsden. They really go out of their way to make sure you are comfortable. I caused quite a stir with the pump as they have never had a patient with one and of course it is a large chunk of metal which is a definite no-no in the scanner room. The rep from Medtronic has to be present because the pump will stall and they have to make sure it does restart when you come out of the scanner room. It was very interesting because I haven't heard the alarm sounds it makes from inside me and even with the ear muffs on in the scanner I could hear it - a bit like the tone of an ambulance - but it doesn't keep going! it just sounds every 30mins. As I came out of the room it went of again so I suppose that was the next 30min one. While we waited the rep checked the settings of the pump hadn't been disturbed and played the other alarm sounds for me to hear. I think we waited about 15 mins for it to restart again. But while I was waiting the doctor that reads the scans came and asked me to stay because the 'team' wanted to come and talk to me. Uh-oh that didn't sound too good and I thought I was in for anothe hospital stay. I know I have a fractured vertebrae at T6 and a tumour that has enveloped it and the doctor was concerned that the spinal column has narrowed quite a bit there as well. When the onc came they went over the previous scans and they too showed the narrowing so when compared things hadn't got any worse - so just flagged up to keep an eye on. I think I am running out of eyes! I think there are a few of us at this stage where you get that feeling they are just waiting for something to happen and it feels like a pat on the back - you'll do for a bit longer. I wonder if they have any idea how it feels to be in our shoes.
I have another problem and I wonder if any of you boneys have any experience of this. Since Christmas I have noticed that I am stooping - hard to describe it but I will try. It happens mostly when I carry anything with both hands. For example if I am carrying 2 cups I find my head bends over followed by my back. I look like one of those little old ladies one sees sometimes - bent right over. But I can't straighten and my body will start to lean & twist a bit to the left. I don't have pain when it happens but I do find it puts quite a strain on my muscles - my stomach ones seem to be trying to compensate in some way and tighten up. Some days it happens a lot, others not so bad but it is something that is defiinitely worsening and I don't really know what to do yet. My onc wasn't very helpful so I will probably ask for a senior one next time I am at clinic. If it is being caused by a weakness in the cracked T6 I wonder if something can be done about it.
The trouble with not posting frequently is that mine turn out to be essays! Love to you all - we are a great bunch aren't we 🙂
Dawn
xx

scottishlass
Member

Re: Bone mets - please join in

Hi Everyone,
AlexD I hope you you enjoyed your concerts. Sounds great to me.
Sorry not logged on here much. The reason? My elderly Dad has been unwell and I have had to take him to hospital a few times as well as attending hospital myself. I plan to have a weekend off ( from hospitals) and try to relax and do nice things aorund the house.
I had 2 units of blood last Friday and noticed an improvement by Tuesday. But I attended the Dental Hospital yesterday and have been put on 4 weeks of antibiotics as I have an infection in my mouth from the exposed bone ( as a result of being on Biphosphonates for so long I think). The Dental Consultant is arranging a dental MRI to check out a nerve in my jaw. I have a numbness in my face that I thought was to do with my nosebleeds from the chemo but the numbness is spreading and I am a bit concerned about it all. I am hoping that the antibiotics will help with that too. I also had my Zolidronate infusion on Thursday and the head nurse came to have a chat to me about my numb face and said it could be a side effect from the chemo as Taxol can affect the nerves in feet and hands so technically it could affect the nerve in my jaw/face. The numbness started just level with my nose/along my cheek. But now it extends to just below my eye right down to my chin....but only on one side. It does not cause any pain thankfully and I cannot feel the numbness unless I touch my skin with my fingers. Nor does it cause any problems with eating or talking! It will take more than that to shut me up! Hugs to you all. Not sure when I will be on here again as not had any spare energy.
Liz I hope you are keeping better. Dawn I hope your new machine is doing the trick. Hugs from Val XX

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Re: Bone mets - please join in

Hi everyone,

I am another one who has not posted for a while. Quick update for newbies. Diagnosed Sept 2008 with BC. Diagnosed with bone mets and possible liver met in Nov 2008. I had Tax in 2008/2009. I have been on herceptin and tamoxifen since March 2009. I saw my onc a couple of weeks ago. He told me that I have 'oncogene addicton', its a good addiction and explains why I have had a good response to herceptin for 4.5 years. I just hope it carries on being addicted and does not decide to go to Rehab. I had a bone scan and I am waiting for the results, I have to get my tumour markers done as well. So am in scan anxiety mode at the moment.

Val good to hear you have finished your taxol, it seems like you were on it for a very long time.

I am going to a local Jazz festival over the bank holiday weekend. Last night I went to see Laura Mvula, she is quite exceptional and did a duet with Jamie Cullen. Later today I am going to see Gregory Porter, he has a fablulous Jazz/blues voice, I have also got tickets to see the Noisettes. On Sunday I am going to see Lihanne Lehavas.
Have a good weekend.

Alex D.
Mildred1602
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Re: Bone mets - please join in

Thank you for replying Helen - much appreciated
vercors
Member

Re: Bone mets - please join in

Hi Mark,
Sorry to hear about your mum's diagnosis. You have come to the right place for advice. I am sure that your head must be spinning trying to make sense of it all.
Have a look at this page on bone met: http://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/secondary-metastatic-breast-cancer/bones
and this one on the effect of cancer: http://www.breastcancercare.org.uk/breast-cancer-information/impact-breast-cancer
Hopefully your mum will get some support in her hospital and get doctor's advice.
Do come back here with your questions. We might not be oncologist, but we have the best knowldedge of side effects and tips on how to deal with them.
If your mum feels like it, we would be happy to give her the support that she needs and answer any of her questions.
Take care

Sam_BCC
Member

Re: Bone mets - please join in

Posted on behalf on new user Mark:-

Hi all, I have just found this site via google as i sit here on nightshift at work.

My Mum has just been diagnosed with bones mets mainly in her spine. This was somewhat worrying but upon finding this site and reading the stories of others it has given me some reliefe and understanding of what my mum will be going through. Is there any information/ sites that you could point me towards that i can share with family and friends to give them a better understanding of what bone mets are and what treatments are available? Mum is awaiting an Mri scan tomorrow with the plan to start radio therapy asap. Her cancer was diagnosed three years ago. Over the past few months though she has been suffering from lower back pain along with a loss of strength in her legs. This past week she was admitted to hospital due to severe constipation. After a ct scan they discovered the bones mets in her lumber spine which explains both of these symtoms. I will try to keep you all updated and will be picking your brains over the next few weeks.

Thanks,

mark

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Re: Bone mets - please join in

Hi all,
I have just found this site via google as i sit here on nightshift at work.

My Mum has just been diagnosed with bones mets mainly in her spine. This was somewhat worrying but upon finding this site and reading the stories of others it has given me some reliefe and understanding of what my mum will be going through.
Is there any information/ sites that you could point me towards that i can share with family and friends to give them a better understanding of what bone mets are and what treatments are available?
Mum is awaiting an Mri scan tomorrow with the plan to start radio therapy asap. Her cancer was diagnosed three years ago. Over the past few months though she has been suffering from lower back pain along with a loss of strength in her legs. This past week she was admitted to hospital due to severe constipation. After a ct scan they discovered the bones mets in her lumber spine which explains both of these symtoms.
I will try to keep you all updated and will be picking your brains over the next few weeks.

Thanks,

mark
helen44
Member

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Hi Ingrid
I have been taking Denosumab since beginning of January 2013, dx Dec 2012. It has virtually no side effects for me, just a few bouts of tiredness. It is certainly strengthening the bones, as shown on my recent scans. Its a quick injection once a month at the hospital. Am on Tamoxifen & Zoladex as well.
Good luck with your treatment.
Helen
Mildred1602
Member

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Hello Everyone
Just popping in to ask about Fulvestrant (Faslodex) & Denosumab. 4 months after stopping capecitabine (stable after 8 cycles) & switching to Tamoxifen & Zometa I was told on Monday that there's progression in my bones again (organs still all clear). Oncologist wants to try this new hormone / bone combination before restorting to Taxol.
What are your experiences of these drugs?
Ingrid
Buffy3
Member

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Thats such good news Clare. xxxx
myfanwy18
Member

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Hello boney ladies,
I don't post often so just a quick explanation. Diagnosed with BC then after MX with bone mets in 2010. Was on tamoxifen and Zometa for a year then scan showed ovary full of cancer in December 2011. Had hysterectomy and six lots of Taxol which ended last September last year. Had last scan result last week after being put on Amiridex. No new bone mets since diagnosis, everything else clear, such a relief. They are keeping me on the same treatment and had result of blood test today, all normal and very good immune system. I know I'm lucky and hope everything stays stable for a long while yet.
Mel, I'm back at work now but I know they weren't happy about me being off during chemo. What can you do though. Hope your lot will see the light and treat you with a bit of respect and understanding.
Love Claire

Buffy3
Member

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Hi Caron, I hope they find out what is causing your numbness, sounds very uncomfortable and must be difficult not being able to balance. Spoke to soon about the letrozole, been very low today and feel very weepy. Saw a counsellor this morning who said it may be a side effect and lack of oestrogen. Most days am upbeat and fine but today am just fed up and tired. Just hope its doing the job intended...its hard not knowing what your body is up to 😞
Hope everyone else is ok.
Love Mel
Guest user
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Hi Mel
Hope all goes well with meeting your union rep. Its all you need on top of everything else! Good news that the Letrozole is behaving itself though.
I had some neurophysiology tests done today for my numbness from the waist down. The electrical currents really hurt. I had expected a tickly sensation how wrong was i !!! Anyway a report will be sent to a neurology consultant so just waiting for a date now. In the meantime i have been given a zimmer frame as i cannot balance. Happy days !!
To all luvly ladies - I hope you are all managing your symptoms and enjoying the sunshine.
Caron xx
Buffy3
Member

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Hi all, its gone quiet on this thread. I am feeling less tired 2 1/2 months post chemo. I have been on letrozole for just over a week, havent noticed any se yet but it is still early days.
I have been sent a formal letter from work about attendance. There is me thinking this should be a return to work meeting, appears my lovely boss is going down the formal route. Am meeting my union rep as I think they may be going against the equality act. I'll wait and see what my union says. Just another thing to worry about 😞
Love to all you lovely ladies

Mel
xx
nicky08
Community Champion

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Bumping up for Saz.
Also, sorry to hear of mobility problems, hoping that treatment will be helping any of you suffering with this.
Hi to all Boney ladies, hope you are doing well whatever you are having to deal with right now.
Nicky x

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Caron,
I can't sense the rods in normal life, but I can feel them under my skin either side of my spine. If I basj into something (step back against a pillar inthe multi-storey carpark etc), they do hurt and I got a spectacular bruise the other week (after the carpark incident). I have bought a little inflatable pillow so that if I am at a meeting with chairs with hard backs I can sit more comfortably. Maybe I should have agreed to the surgeon going in through the front - he gave me the choice, but I assumed it would be less intrusive with a more direct route.
I do take slow-relief morphine twice a day but don't need anything for any breakthrough pain. It does take a while of a morning for my hips to get going in the morning I get some aches in bed at night, but not too bad. If I stand or walk too long I get an ache at the bottom of my back, but it is definitely getting better. I can measure my progress with my 3-weekly trip to oncology and then having to walk through the hospital to the pharmacy. I definitely managed it alot better today than previously.
At 48, I really didn't expect to be on crutches and having to get in the car for really quite short journeys, but hopefully things will improve.
Sue
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Thank you all for your comments and more importantly for taking the time to support me. Its such a great help!
Susan - I am so pleased you no longer need a brace and can use a treadmill (You're just showing off now) ha ha. Seriously well done! Great news that your tumour has shrunk. There are physios at the hospital but have not been offered their services as yet as i am still having tests to find the cause. I have been told that Radiotherapy is a last resort to be saved for later.
Dawn - You asked where my bone mets are. I asked my onc when diagnosed which bones, he said all of them. Small mets but all over (spine, ribs, pelvis etc). The numbness to my undercarriage was gradual over 2 weeks and my legs and feet over the following 6 weeks. At night when laying straight i get extreme pain in the soles of my feet and calves. Have been given amitriptyline pills by my gp but doesnt seem to make any difference. When i stand pain disappears just numb and heaviness. I hope your pain pump proves successful and that you start physio soon. You have been through so much for a long time yet still have the time and energy to send me an indepth message so thank you Dawn.
Sue - Am so glad you can use your legs now. Your operation must have been awful but so worth it to get your mobility back and your independence. Can you feel the rods in your back? I hope they are not causing too much discomfort. I had bloods done at hospital today ready for Zometa tomorrow and kept losing my balance. I now have a zimmer frame with wheels at front but rubber stops at back. Doesnt seem to like the carpet and not the sort of thing i imagined using when i have only just turned 50 years old, but i do feel safer so thats the main thing (although i will feel embarrassed using it outside). Anyway occupational therapy are going to come to my house some time soon to see what i could have in the shower.
Sarbjit - I was diagnosed with breast cancer in September 2011 and bone mets 2 weeks later. I am on Zometa every 4 weeks and Tamoxifen. Had chemo til March 2012 and mastectomy & 17 lymph nodes removed in April 2012. With regards to bone pain i have a constant ache in lower back and sharp sporadic twinges to ribs and legs which make me jolt but then its gone. Am achey & sore when i get up in morning but it gradually eases with painkillers. Hope this helps. It would have been nice to meet up but i live in Somerset.
Caron xx
belinda
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Hi, I agree with herbgarden and in answer to your post Sarbjit it's my understanding spinal cord compression only indicates the activity and the extent of mets in that particular area. Last Christmas I had 5 sessions of rads to my spine as I had pains and numbness in the base of my spine and down my right leg. A CT scan showed nothing untoward so I had an MRI which showed I had a met growing very close to my spinal cord. The pain and numbness went after I'd completed the rads. Part of the area I had rads to included my sacrum which is the 2nd time around. I'd had rads to my sacrum approx 6 years ago. This is my 10th year of living with bone mets.
Good Luck to All..x
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Idon't think that the timing of vertebral collapse indicates the stage of disease necessarily but only the extent of disease in the vertebra that has collapsed.......So my secondary disease presented with collapse of T4 which was impinging on but not compromising my spinal cord.......I had emergency radiotherapy which commenced within 3 hours of the MRI! But at that stage I only had disease in T4 with very small amounts in T3 and T5........2 years later i have small amounts in several other vertebrae which are being held stable with capecitabine....and remain essentially asymptomatic...long may it continue!
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Hi Sarbjit
I seem to be on some sort of fast-track process with my bone mets. I started getting back ache last August (2012), had an x-ray in September to see what was going on and last October it was confirmed as bone mets. My vertebrae had looked a little odd on my initial bone scan in November 2011, but they thought it might be just wear and tear. I had the rads to control the pain in my back (and the sympathetic pains in my ribs, hips etc) and it was during that, in the November, that I got compression and needed the surgery. I am very pleased that they reacted so quickly to my compression as I would have been paralysed without the surgery.
The risk of compression does depend on where the tumours are and precisely how much they reduce your bone density. The first sign (I now realise) that I was getting compression was nerve pains down the front of both legs. These should have been a warning of nerve damage, but I wasn't aware that this was a danger signal. If I got that or pins and needles in my feet or hands, I would be straight on the phone to the hospital to make sure that I didn't have another vertebra collapsing.
Sue
ponsmuir
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Sarb - are you really in West London? I thought I was alone. I will send you a PM.
Susan x
PS I have had breast cancer for 20 years now and bone mets for the last 12 years, slow growing no doubt, painless and undiscovered. They mets were found to be 'very extensive' 4 months ago.
i had good news yesterday - my Oncologist reported that the Letrozole is working and my breast tumour has shrunk. And that's just after 4 months of taking it. She was also surprised to see me walking normally as she had previously only seen me unable to move in a hospital bed or in a wheelchair in January. She was optimistic about alternative therapies if/when Letrozole stops working. I'm not complacent by any means but am trying to seize the moment.
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Dear Dawn
Its really painful to hear of what you are going through. Also Caron your numbness and lmited mobility is really worrying...I hope you get some answers and some committment from the doctors to address your problem .
Sue my thoughts go out to you with the struggle you are having with your back and the cord compression.
does this mean these are different phases of the same disease? I have bone mets extensively...i get pain on an off in my right hip, some discomfort in my ribs and in my lower back on the left. I sometimes get stiff when straighteneing my back when I get up and I do feel uneasy sometimes going to the loo. I get grinding noises and pain in my neck sometimes and sometimes some pain in my skull when I lean my head back for a long time.
I was diagnosed in April 2012. Dear sue pls can you give any advice on how long you have had your bone mets before you got cord compression? Dear Dawn please can you tell me more about how long you have been battling wth bone mets and how you got to this stage of struggling with so much pain? Dear Caron how long have you been suffering with bone mets, when were you diagnosed?
It is so hard fighting this disease and its so useful to know about all your struggles, I hope I can be of some help....if any of you are in west london pls get in touch i would love to meet up
Sarbjit
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Hi Caron
I was in hospital in the autumn with cord compression. With me, the rads actually mad the vertebra weaker and it collapsed completely. I now have titanium rods in my back (from T10 to L2) to replace T12 that was shot to pieces. Before my surgery, I was slowly losing the use of my legs, only getting around by holding on to furniture etc. Since my legs have been fine. I can't walk huge distances or stand for long, but can get around the house. I use crutches for outside and if I want to go any greater distance, I either drive or have a wheel-chair.
Dawn suggested a zimmer-frame. You could try that to see if it helps, but it may make things worse. I was recommended one by the radiologists, before I saw the orthopaedic surgeon. In fact, it was the worst thing for me as bending forwards compresses my spine more. I now use elbow-crutches and they keep me more upright and prevent compression. Round here, you can borrow both (for a small donation) from the red cross, so you could do that and see what helps you the most.
I hope they work out what is causing your loss of feeling (so they can fix it).
Sue
dawnhc
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Hi Caron,
It sounds like you are going through a really tough phase with this wretched disease. Have you got contact with macmillan nurses and if so have they not suggested things that can help you to get around. When I was going to their once a week days at the centre some time back, a couple of the women had these 3-wheel folding frames that you held on to and had a tray so you could move things around without having to carry them. Do you mind me asking whereabout your bone mets are and if your numbess came on suddenly or if there was a slow build up to it. I feel like you do, that it is a slow downward spiral, and I don't always feel the oncologists pull out all the stops to find out what is wrong and how they can help. They do rush if they suspect spinal cord compression but if it isn't that things seem to come to a standstill. Sometimes I think it is my own fault and I should make more fuss LOL. My damage, at least the damage that is causing problems, is my lumbar spine and particularly where the nerves exit at L2 and a tumour is wrapped around them. That affects my right leg down as far as the knee and I am slowly losing sensation in the skin. Also I had a pain pump fitted under a pocket of skin in my tummy area which contains morphine & a local anaesthetic (bupivacaine) and feeds through a catheter into my spine. I have a small hand held device which I can use to give myself a few extra boosts during the day and when I do that it affects both legs now plus the bits between them (could be too much info) and I know just what you mean about the problems going to the loo. I have to be careful when I use the device to go to the loo before pressing the button! I did have a 'wee' accident once when I forgot. They have said they can stop using the bupivacaine but I feel I need this and as it isn't happening every time I think I can manage. The other thing I struggle with is the weakness in my back now and I find some days I just can't straighten myself - it feels like the muscles in my back just aren't working. I did tell the onc at clinic recently and he did mumble something about writing to my gp and suggesting I should have some physio. I don't know why I didnt think to say why couldn't I be referred to the hospital physios. Surely it makes more sense for them to see me as they are dealing with cancer patients all the time (it is the royal marsden). I am just waiting for the copy of the letter to come to me and then I think I will phone the hospital and ask why I am being referred to outside physios.
I do hope the neurophysiology tests show up what is causing the problem and that something can be done to improve things for you. It must be just so frustrating when you can't get answers and your quality of life is being so badly affected. I'm sorry I have gone on a bit Caron - just that your post struck a chord with me.
Val lovely to hear from you again and everything crossed for you that you can have a long chemo break this time and get your strength back too with that extra 2 units :).
Dawn
xx

ponsmuir
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Hi Caron,
Each and everyone of us is different, but if I could add my penny worth. Mid December I was admitted through A&E with spinal cord compression. I was bedridden and could not move. It was very painful - I had full control of my bladder and bowels however, and once the steroids/radiotherapy had kicked in, I could walk a few paces if strapped into a body brace stretching from waist to chin.
i was put on Letrozole and Zometa. Now 4 months on, my spine has stabilised, I no longer need a brace and I walk a kilometre a day on my treadmill. My breast tumour is shrinking and I feel a lot better.
Do you have access to a Physio? Can Macmillan perhaps recommend one in your community? that's how it works with me. My physio sees my hospital notes and acts accordingly. Clearly you don't want to overdo things and I understand only too how important it is to feel safe. And when to rest up. Your specialists will know what you are capable of, and hopefully will encourage you to become more mobile when appropriate.
Susan xx
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Hi luvly ladies
Sorry i haven't posted for a while as i have been feeling very down with the numbness i have had from the waist down for the last 8 weeks. It has made me realise how i took mobility for granted. My days are spent mainly on the settee as that is where i feel safe. I have to hold onto furniture to get around the house or i lose my balance. The stairs have to be tackled on all fours as my legs are so numb its like dragging a heavy weight around, and going to the toilet is difficult as i cannot feel when i have finished. Luckily no accidents as yet. CT, MRI and brain scans were okay (other than bone mets already known about) . I now have an appointment for some neurophysiology tests on 30 April. Not sure what to expect on the day and am scared these symptoms may be the start of a downward spiral. Its hard to feel positive when walking and moving about is so difficult and affects everything you do.
At least the scans were okay i keep telling myself but am worried as to what is causing the problem as onc says its not cord compression. Has anyone else here experienced these symptoms?
Thank you all for reading my rant and my best wishes are sent to you all for your treatments and scan results etc.,
Caron x
lucinda
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Val so pleased to hear from you,and congratulations on completing the taxol marathon.Really good news on your results...Is ypor hair growing back yet? sorry your hb is low again,no wonder you don't feel up to baking!
I have found it hard going with the exestemane/everolimus combo, but when I was my onc phoned me to say the latest scans showed that the treatment was working I feel it has been worth it.I am having a weeks break so my mouth ulcers can heal and the will be starting again next week.Had the first of 5 lots of rads today to hopefully the leg pain may improve soon.

Just conscentrate on building up your energy levels and hope the new treatment plan kicks in.Take care.


Lxx

Buffy3
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Hi all, my hospital seem to scan me at 3 month intervals. Just been for a check up today, I am too about to start letrozole ( Plus zometa n zoladex) after just completing ec chemo. I have been told to let them know if I notice any unusual aches or pains.
Val, I hope your energy returns soon, no baking 😞 Mine took a few weeks to return. Almost back now, although having all my treatments at hospital has worn me out.
Have a great weekend,
Mel
xxxx
Lynnq
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Thank you Susan. I see the surgeon next Friday to have my dressings removed, and he'll probably tell me then what the parhology report says. He said that it would be 'interesting' He is a very nice man, vey reluctant to remove the other breast and wanted me to have recon on the R side. Both the Oncologist and the BCN were supportive I know rhat that I will be happier. Just can't wait to have the dressings removed and get back to my 'new normal'
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Glad to hear things are going in the right direction for you Scottish lass and you know your treatment plan. Hopefully the blood will perk you up and help with the tiredness. Looking foward to your chatty posts re charity shop shopping!...today bought a (fake!) cut glass vase for flowers £3! last week a nice wool mix 3/4 length zipped coat for £5.99. Catching you up! Pamx
scottishlass
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I had an appointment today with my Consultant as I have completed 18 rounds of Taxol.
She is happy with the results and TMs reducing although the CEA has reduced much more than the Ca125s.
Instead of resuming Femara which I stopped while on chemo she has decided to put me back on Tamoxofen which I haven't been on since 1999/2000!
Unfortunately my HB is low yet again so I will be having another 2 units of blood soon, next week if they can fit me in. It is only at 8.5 so no wonder I am feeling knackered. Was planning to bake but am sitting resting instead trying to conserve my energy.
She told me there are many other chemos I could have in the future and could even return to Taxol at a later date. But giving my fingers a chance to recover would be advisable right now. Glad the appointment is over so I know where we go from her. She will see me again in 6 weeks to see if things are improving for me. Fingers crossed I will get some more strength so that I can do normal things again. Thank you for your support while I have been going through all this. Have a great weekend all boney ladies and anyone else who posts on this amaing supportive thread. Hugs from Val

EllisB
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Hi Lynn
I have scans every 6 months - my onc thinks is a reasonable interval. Why don't you ask them? Best wishes for your treatment.
Chris

ponsmuir
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Lynn,
I have extensive bone mets and have been on Lectrozole and Zometa, like you, for the past 4 months. Scans taken at the diagnosis of secondaries showed a 1cm shasow on my liver which was indeterminate. Also the possibility of mets in my lungs. My Onc deemed these to small to worry about and is going after the bone mets.
She told me that the Letrozole would 'wash' my body and she wanted to see me again after 3 months with a scan 3 months later. Meanwhile, I've been to A&E as I was concerned my neck was puffy. I think this was the effect of radiation and steroids bit I don't do self diagnosis any more and would rather be safe. Anyway, they gave me a scan which will inform my Consultant when I see her next Monday.
I think a scan after 6 months is entirely reasonable. I understand that Letrozole takes time to work - it seems a potent little pill with powerful side effects E.g bone aches. Making me feel a hundred years old, stiff and sore.
My neurosurgeon told me, in a separate consultation 3 weeks ago, that my spine is stabilising so I feel something is working between the radiotherapy, the steroid treatment, the Zometa and the Lectrozole.
It sounds to me that your Onc. vocalises a little too much! We are ll sensitive to those thoughts that trip out and probably make a lot more of them than we should. The Lectrozole will be doing battle with any 'grains of sand'. Try not to worry - easier said than done.
Susan xx