Bone mets - please join in

[Mema23]

Have a lovely holiday you ladies that are travelling, I'm off to the Isle of Wight on Tuesday to visit my son and daughter in law, not exactly abroad but I guess I do have to travel overseas to get there! Marion x

[JulieD]

What glob trotters we have! Hope you all have a lovely time wherever you're off to.  By the way Thumbie I love Somerset it's like my spiritual home and always makes me feel more at peace. I'm so pleased to hear your pain was not down to spinal compression and hope they'll be able to get you sorted out and get it under control.

Hope you have the energy to pack Val, you've got a little while to do it so maybe a bit each day.....

Sitting here in the wind and rain Egypt sounds good to me too - enjoy!

My partner has been waiting for a hip op (her third!). The one she's got is metal on metal and is leeching cobolt and other substances into her blood stream and poisoning her! They've cancelled at least three times now and we're getting a bit fed-up!! They don't seem to understand that as she's my carer/driver it's not just a simple matter for us. Moan over.

Hope all my boney friends are coping, love to you all xx

[doodlecat]

Val I hope you get your back pain sorted and you enjoy your holiday. You too Ruth. I am off to Egypt next week so having a two week break from Cap. Hurrah.

This is my favourite thread, too.

June xx

[Thumbie]

Yes, Val, I hope you have a good, refreshing break in France. I'm off on holiday to Somerset next week, Barcelona will have to wait haha (meant to go there until my leg started playing up). I've had a MRI of my spine to check there was no spinal compression due to spinal mets. There isn't - phew. The tumour on L4 vertebra (which has already been zapped with rads) is putting pressure on the nerve going down my right leg and causing the weakness and tingling I have had. I don't know if it's also responsible for increased pain in my right hip/buttock. I'm really impressed that the Macmillan nurse gave me a summary of the result over the phone to help me relax and enjoy my holiday. I'll find out more (treatment options) in October.

Love to all. Ruth

[Julesie]

Hi Val
Sorry to hear that you are having pain from your back at the moment but hope that you can get it under control before your trip to France. You are such an inspiration to all of us suffering with this horrible disease and I truly hope that the Vinorelbine works its magic and brings your tumour markers down. I was sad to hear the news about Gail but I'm sure her family were comforted by your support. Hope you have a fab time with your daughter and enjoy some wonderful French food and wine! Xx

[scottishlass]

Hello my lovely boney friends,  Hope you are all coping with treatments, side effects and all that bone mets encompasses. 

I saw my Oncologist Consultant on Monday. I have been experiencing a lot of back pain in the last week or two. I am fine lying flat but if on my feet for a while my back begins to ache. When I go out now I find using my crutches helps as it takes the strain off my back muscle. I had a muscle removed from my left back when I had reconstruction done 24 years ago, LD Flap. So I think my right back has to compensate a bit so that it takes more effort to support myself. I also find that I look more and more bent. I have now increased my MST (slow release morphine) and also using Lidocaine patches for pain in same area.

We are off to France for 12 days from October 1st to visit our daughter. When I return I will be starting yet another chemotherapy called Vinorelbine. I am having it intravenously. Not the pill version. My tumour markers are on the rise again and it looks like the Taxol didn't last as long as my Consultant had hoped. I am okay about all of this. I sort of expected it and thought before I went in to see her that this would be happening. My husband came in with me to help retain what she told us!

My calcium levels are still being monitored and are at 2.6 which is at the higher end of normal I am told. Good news is that my HB (iron levels) and remaining stable at around 9.5 (which is low for me as a few years ago it used to run from 12.5 to 13.5 but a nurse told me that as I have lost a lot of weight this is why). I am still not puting on weight so that is being monitored too. I go for my Zomita on Saturday....yes the day ward is open on Saturdays now. On Monday next I see another Radiotherapy Consultant who discussed radiotherapy on the bone cancer in my cheekbone/face. But when I saw her last time a month or so ago, she did not want to give me radiotherapy at that time as I was in no discomfort, and she did not want to make the osteonecrosis of my jaw get any worse as the areas are very close.

Amazingly I am feeling well just now and am not at all down despite the awful post I have just written. I really mean that girls.

I was at the funeral of Gail on Friday. She regularly posted on the BCC threads. I knew Gail from on here and the day ward too that we both attended. I spoke to her Mum at the funeral and we exchanged phone numbers as I found out at the humanist funeral that Gail used to live on the west coast of Scotland on the ajoining town to where I lived for a few years and my brother in law lives there still ( I met my husband there when we were 17! ) I phoned Gail's Mum yesterday to see how she was coping etc and found out that she knew my brother in law and sister inlaw and not only that but worked with them! Small world eh?

     I talk too much....far too much.

     Thank you for all your lovely compliments but I haven't always been upbeat like this and remember well feeling very very scared and isolated. When I got diagnosed with extensive bone mets ( ribs, thorax, spine and pelvis) in 1999 I did not know a soul with bone mets and there was no BCC site for me then and I did not own a laptop. 

This is still the best thread on the site, in my opinion, so lets keep supporting each other. Hugs to you all, Val ( who is lying flat on her back in bed with a snoring cat!) goodnight.

[lucinda]

Hi I have been on denosumab for 6 months now, was switched to it because it is kinder to the kidneys and they were running it as a trial giving 6 months treatment and then checking results. My last scan showed "slight improvement" to spine mets....that is very good news to me as I have progression in the liver and need all the good news going. After e/e failing I am now on capecitabine, will have a scan after the next cycle to see how that is working and keeping my fingers crossed as I seem to be using up treatments much quicker than I would like.

A good weekend to all my boney friends..it is blowing a gale down here on the south coast. I have just returned from a memorial service for a family member who died from lung cancer 3 years ago, why are cemetaries placed in the most exposed areas and why does it always rain when you need to visit the grave to pay your respects.

L xx

[Thumbie]

Hi vercors, the reason I was given was that it was a new drug which had had good results and many patients were being switched to it.

[vercors]

Hi Danica, sorry you had to join this group but you will get a lot off support here.
Thumbie, May I ask why you were changed from Ibandronic acid to denosumab?

[Julesie]

Hi Danica. Sorry to hear that you've just been diagnosed with bone mets. I'm now on Denosumab, just had my 4th yesterday and so far it's been fine with no side effects. I'm not due a follow up scan yet but am hoping it will show some improvement. Good luck with your treatment.

[Thumbie]

Hi Danica, I have been having denosumab for over 6 months. Previously I had pamidronate which is a similar drug to Zometa ( I have had low dose zometa when on a research trial a few years ago). While I have been on denosumab scans have shown that there is some healing in my spine. So I am very pleased with it!

[Coco0896]

Hi Danica7, welcome to the group and sorry to hear of your recent diagnosis. I am having Denunsomab Injections and will have my second one next week, all fine so far! So not a lot to gauge from as its early days. Hope you manage to get plenty of support and advice from here Take Care Love Meg xx

[Jo_BCC]

Hi Danica

I'm sorry to hear of your latest diagnosis but I am sure you fellow forum users will be along soon to give you some much needed support.  In the meantime I have put for you below links to some of BCC's publications you might find helpful.

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bon...

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

Take care,

Jo, Moderator

[Guest user]

hi everyone,

im new to the group and when i was told i had bone mets a few days ago my world fell apart....however i have just been reading through this thread and thank you all for giving me hope.

could i ask - how many of you are on denosumap compared to zometa, and is it more effective?

[Coco0896]

Hi to everyone, hope you are all well. Hi to you too Claire, nice to hear from you, had sent you a PM which you obviously did not get so glad to see you back on here. Where did you go in Cornwall? We spend a great deal of time in Boscastle, which we have done several times a year for the last 12 years, love walking and the dogs enjoy it too. Hope you are keeping well and issues getting sorted out. I have just joined the closed group Chat Girls via FB so thanks Buffy for letting me know it was there. Don't know how many of you go on there as can't tell as everyone is under their proper names!! Claire I will try to PM you again on new forum and see whether you get the message. Take Care ladies xxx

[myfanwy18]

This is the first time I've posted on this new site.  Meg, I don't know how to send the messages as before but hope you are well, I have been thinking of you.

Sorry to read so many are having pain issues, hope that will pass with treatment.  I'm very lucky in that at present I'm pain free.  I did have my operation for a recurrance  a couple of weeks ago but some of the skin has separated and ouse s fluid which smells bad.  Don't know whether to make an issue about it or whether its to be expected.

I did though have a lovely holiday in Cornwall last week, made me feel great. Sea, sand and sun, ahh!

  Saw a new GP today, she was lovely but I wasn't so sure the feeling sorry for me helped.  At the end of the day it is what it is, crap, I just have to get on with it; Val, you inspire me when you say enjoy every day, such a good way of thinking, your strength of character  shines through always.

Claire x

[racer]

 +-

Thanks Val and Belinda. Yes I am on the med you said Val...my memory is not good lol! Still having tingling so may have to double dose from tomorrow. The meds are making me sleepy and I initially slept better than I have for a while. I had a rough night last night as my hips were painful. Just hoping a bit of sunshine in Lanzarote in the next few weeks will help.

I have had rt on both hips and pelvis. I had some on middle of my back in July but it affected bottom of my back and I had to go to bed. I was bent double think a nerve had ben affected.My left hip I had a course of rt and I am able to walk better than prior to treatment. I just take anti-sickness tablets beforehand to help in case I feel sick. It is one of those things to whether it works or not but when you are in extreme pain I will try anything. Hope you go on ok xx

[JulieD]

Hello all my lovely bone ladies,

Haven't posted for a while but had been keeping up to date with all your news via e-mail alerts. Got a bit concerned when all went quiet till I realised I needed to go to the new new site and resubscribe! Does anyone know how IU ad friends now?

Good to see this thread active and some good news in amongst it too.

The FB chatgirls page is a closed private group specifically for secondary bc so is invite only, if you PM me your FB details I can add you.

Got bronchitis at the mo so very lethargic so won't write the long postI'd intended. Just wanted to touch base with you all again and send my love xx

[Ramsfan55]

Great Ponsmuir, fantastically inspiring. Long may the letrozole and zometa keep working x
Suzanne

[Thumbie]

Good grief, Ponsmuir, you have been through it. What an inspiring story! I am so pleased you have had such good results from treatment.

[ponsmuir]

We need all the help and encouragement we can get! So can I share my positive news to show there is hope for those even with ver extensive bone mets. At Christmas my 1994 breast cancer appeared out of nowhere (in retrospect, back aches in the past few years were precursory signs, How wonderful is hindsight). I was saved from paralysis, thank Heavens, and after aggressive rads, steroids, Lectrozole and Zometa, was eventually allowed out of bed but only if I wore. a brace from hip to neck. I was sent home to a bedroom converted into a hospital room and in the care of the local Hospice team.
The radiotherapy after effects were pretty grim and it was hard to walk even a few steps. But I was told to use it or lose it, so gently got busy with the family walking machine. And then the scans started to improve. My spine, said the neurosurgeon, was becoming 'sclerotic'. He wanted me to stop wearing the brace to help build up muscle strength. The last scan showed my breast tumour had shrunk as had a 'tiny' liver lesion which made them think it is a met. Best of all, my neurosurgeon discharged me in August - my spine is remineralising. He looked so pleased for me, so much so that he showed me before and after scans, pointing out where the remineralising was happening. He also added that he'd not seen a worse case than mine and this is from a mature consultant in a major London teaching hospital.
The Letrozole is bearable though I get the aches and pains we know and love. I take a couple of Paracetemols once or twice a week instead of 8 a day with Oramorph when required. The quality of my life has been improved beyond measure. Of course, I'm aware that the Letrozole will probably stop working and the reality of what I have is always there. Adjusting to the 'new' me isn't easy but I am so grateful to all those who have posted on this Forum and whose loving advice is helping us all through the difficult times.
PS I take a Vitamin D supplement to help the Zometa. I am not allowed extra calcium - at Christmas my calcium levels were shockingly high and I had saline drips to clear my system. I'm not sure I could manage to drink 3 litres of water a day...

[Ramsfan55]

Hey Val, I have had a problem with high calcium levels. I haven't taken my adcal for a while either. However the hospital rang me straight away when my blood test came through and asked me a few questions - did I have a dry mouth? Did I have constipation? I answered yes to these questions! Am I drinking plenty of fluids? Well I had to admit that my drinking levels have been poor recently. So they told me to drink 3 litres of water for the next two days and then come in for another blood test and go to the chemo suite to see the doctor. ( I'm not on chemo but that's where I go for zometa etc) the blood test showed calcium still rising, but the doctor was still convinced that I was dehydrated so he gave me a litre of saline. Then I had my zometa. Was told to continue with the 3 litres per day and come back the following week for repeat test etc. this showed the calcium was starting to come down! He gave me another litre of saline and told to carry on drinking 3 litres. Got to go back this week for another check. So are you drinking enough??!!
Suzanne x

[lucinda]

Hi Birgit I have just completed a course of 5 blasts of rads to my left pelvis and I had the same to my right pelvis a couple of months ago. I was told pain could get worse with both sides but i cannot say that happened. My left hip blast did not bother me at all and I have no pain at all now in my left pelvis, my right pelvis is not so successful because I also have arthritis that side but it is not as painful. I did have diaroah for a few days bit soon sorted with immodium.Was really worth it for me, but not everyone reacts the same, so I hope it works for you.

L xx

[Buffy3]

For Facebook group for younger women search 'younger breast cancer network UK' this is the main page and them message them. Someone will get back to you. The secondary group is a mix including bone mets. The ladies are knowledgeable. I hope you find us. xxx

[belinda]

Hi Birgit, I've had both, a one off blast and a couple of courses. I've had great results very soon after treatment every time, usually within a week. I've also experienced pain getting worse before getting better but as I usually feel better quickly the worse part normally only lasts 24 hours or so. Although I was warned I may experience some digestion problems a couple of times I was ok. Good Luck with your treatment and have a great winter holiday.

[Thumbie]

Birgit, I have had 1 short courses of radiotherapy to my hip, after my hip replacement and then later on a one off treatment when there was some progression further up my hip. This second treatment was primarily to relieve pain. I didn't have any of the unpleasant side effects I was warned about on either occasion. These are: diarrhoea because the intestines can get in the way (can carry on for a few weeks), tiredness, and the usual skin problems (the skin can get red and sore). I was also told that the pain could get worse before better. I did experience this from my one off and had to go onto morphine for a while. Just when I thought there would be no improvement there was - over a month after the treatment the pain subsided and I was able to give up painkillers altogether - very pleasing! There can be some late effects from radiotherapy such as weakness or pain at a later date. You could ask about that, I don't think it is common.

Good luck.
Ruth

[Guest user]

Nerve  pain is horrible - I find  that cold helps me.  i.e. a cold compress.  I take Co-dydramol at night and that seems to take the edge of any pain.

I  want to ask you bone mets girls if you could help.  They are suggesting radiotherapy now as my hip/pelvis is getting very painful.  Not yet decided whether they are going to give me a one off  blast or a course.  Those of you that have had it, what are the side effects, how  long will it take to see some  benefit and is there anything else I need to know?

We are planning a long winter break early next year, so any treatment needs to be done before then.  Any replies gratefull received.

[belinda]

I take Amitriptyline at night for both nerve pain and to help me sleep. I've found it really beneficial and I sleep much better and I also have no pain at all. I did try Gabapentin first but it made my nerve pain worse, much worse. I've since been told Gabapentin works for around 60%, of patients, so I was one of the smaller 40% group.  I found the pain clinic at my hospital really helpful and they will tweak doses and keep trying until they get whatever's the best for you.

Agree with Val don't put up with pain. x

[scottishlass]

Hello Racer, the drug may be Amitriptyline ( which is used for depression but also good for pain). I have been on it for years but mine is for pain from Sciatica from my left buttock and down the back of left leg.. If you have nerve pain, which I also have , you may want to ask if you can try Gabapentin which was given to me for nerve pain and I have been using it for years with great success too. Whatever they give you I hope it helps. Nothing worse than a pain that cannot be helped. Hugs, Val

[Coco0896]

Sorry that was supposed to say Buffy not Huffy!!!! Sorry xx

[Coco0896]

Huffy, please can you tell me what I can join, have bone mets and am finding I want to be somewhere with others in my situation, did you say there is a Facebook closed group, please let me know. hanks very much xx

[racer]

Hi everyone,

Not been on for a while. I just wondered if anyone has had any problems taking Anastrazole. I have been taking this for a year but the last few days I have had a funny tingling almost like sunburn sensation from my waist including hips, lower back, groin and hips. Rang Macmillan Nurse and advised me to see Gp who has prescribed some medication taken for nerve pain. Can't spell the med but is also used as an anti-depressant. Take care  everyone xxx

[Buffy3]

Hi I am on a younger women's facebook...youngerbreastcarenetwork (under 50), am not on any other groups. I think there is chat girls but not sure how you get involved. Mine is a secret group for secondary (not just bone). If you are interested search the name above and message them and they'll add you. xxx

[Thumbie]

Easter Bunny, that's a nasty bit of news. I hope they get a treatment sorted soon.

Belinda, thanks for your good wishes. I saw the oncologist yesterday and he attacked me with sharps and hammers to check my nerve function. 🙂 he thinks that a tumour on a lumbar vertebra may be pressing on a nerve. He has changed my hormone treatment from letrozole to tamoxifen which I only had for two years after initial diagnosis. I can't help feeling, in darker moments, that this means the options are running out. However, he assured me that there is "a lot of life left in the tamoxifen option". Fingers firmly crossed.

Is there a Facebook page for bone mets folk? How can I find it?

[Buffy3]

It does seem quiet on here. I guess the Facebook groups are more immediate these days. Anyway love to all xxx

[Guest user]

Thanks Lucy. X

[Lucy_BCC]

Hi Easterbunny and welcome to the BCC forums

In addition to the valuable support and information you will soon have here please feel free to call our helpline for practical and emotional support on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays

You may find the following link to the BCC 'Secondaries' page helpful as it contains information and further support ideas:

http://www.breastcancercare.org.uk/secondaries?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_cam...

Take care

Lucy

[belinda]

Hi Thumbie, hope your symptoms are easily fixed or explained soon with your MRI. I had some of the symptoms you descibe, affecting my hip replacement leg too. Mine were due to bone mets in my sacrum. Had some rads over last Christmas, I'd had some rads there years before so it was ok to have them again and it fixed the problem.

Hi Vercors, I have calcium supplements, would love to hear what your Onc thinks. I've just read the link, thanks.

Hi to everyone...it seems very quiet since the forum changes? x

[Guest user]

Hi, i was diagnosed with secondaries in skull in 2010 and I've been doing well til recently. Yesterday following a scan last week I was told I now have new tumor in spine and further activity in skull.... Why ....why.....why..... Feeling crap as I just want to get one with .life. Positive news tho that onc says I might be able to take part in clinical trials.

[vercors]

By the way, are any of you ladies on calcium supplements? i just read this article doubting its benefits especially because of their side effects:
http://www.hopkinsbreastcenter.org/artemis/201309/4.html
I will need to discuss this with my onc next month.

[vercors]

The site changed while I was on holiday and the email notifications stopped. I really wondered what was happening to everyone here. A lot of catch up to do. I like the fact that the latest post is at the top, i now need to get email notifications started again.
Sorry to read that some of you are struggling. Xxx

[Thumbie]

Oops, that should have been weakness in RIGHT leg going downstairs!

Update: could be spinal compression but does not need immediate treatment; the warning is to watch out for much greater weakness and any incontinence or inability to wee. Could be due to radiotherapy after effects which can kick in months or years after the treatment and involve nerve damage. An MRI in the next few weeks should show in greater detail what's going on.

[Thumbie]

Hi, best wishes to all. I'm just getting my head around this new forum. I wish I could see all the previous posts when replying, I'm sure that used to be the case. Oh well....

Just to pick your brains: I'm scaring myself with worries about spinal compression. I have had a bit of buzzy nerve sensation down my right leg on and off since having a hip replacement nearly 2 years ago, and have had radiotherapy to consolidate L4 vertebra because it was collapsing. Recent scans were good - signs of some healing in the spine. However, in last couple of weeks have experienced more intense tingling in right shin, increased hip pain and a bit of weakness when I rely on left leg going downstairs etc. Having said that I am still mobile and continent! I have been in touch with my orthopaedic Macmillan nurse and they will see me today. I really think I might be wasting their time, but I can't know for sure. Has anyone been in a similar situation?

Love to all, and hope treatments are going well,
Ruth

[Mema23]

Hi all, that sounds like good news on the skull mets Belinda, I don't know why but they do seem to worry me more. I love the Great British Bake off and between watching that and hearing about Val's pastry, it has made me contemplate getting out my cake tins and finding my rolling pin. May as well make the most of my month off sick from work! Hope everyone is enjoying the sunny weekend, Marion x

[belinda]

Hi to everyone   I think, I'm sure I've been told this in the past, most of us with bone mets probably have some skull mets and I know I've had some mets or met in the bones of the spine, skull area for many years. They are just treated the same as my bone mets elsewhere and having skull mets does not have any connection to developing brain mets.

I've had a nice busy week so just like your pastry Val I've been resting today. Are you watching Mary Berry and the new Bake Off series?

belinda..x

[scottishlass]

Good morning, sorry to hear you have scull mets too Livlassie. I have just put that on the back burner ( as the saying goes) although it did give me a scare until my Consultant told me I had had them for years (cannot believe no one thought to tell me) so nothing was really changed.....I just didn't know they were there!   Hope that makes sense. If not can I blame the scull mets 🙂 

I was baking again yesterday. I made short cut pastry and while it was "resting" in the fridge I went to the local shop and bought the ingredients I needed to make a quiche lorraine.  Twas delicious too as I haven't made one this year at all.  It feels good to be able to complete a task at long last but I do have to rest inbetween which I didn't used to have to do. Not sure if it is old age or BC that causes the tiredness. Suppose it is a bit of both and I do not want to give in!

Got a phonecall  from GPto get bloods redone as calcium level a bit high. But the hospital had the same results form last week and never picked it up. I was told to continue with my calcium tablets but I have been remiss and haven't been taking them for weeks anyway which makes me wonder if it is the BC bone mets misbehaving. Will just have to wait and see.

Have just booked our flights to fly over to see our daughter for 12 days. Got two return flights, (including the £10 extra  that you need to pay) for the TOTAL sum of £61.   Yes that is TWO tickets for TWO of us. Could hardly refuse could we!   Hope all boney ladies have a pleasant weekend. Sun shining here so better go get ready and go outside to absorb that sunlight. Hugs Val

[livlassie]

Thanks for that Jo. It does seem to be much improved so far. Well done for that! xx

[livlassie]

Hi Val. Thanks for the nice words of welcome. I did some reading of the posts i'd missed and was so sorry to hear about your recent issues. I have skull mets too - a couple at the place where my spine joins my skull, i think.  They are the scariest ones, aren't they? You've also had the osn to deal with and that must be tough. Think you are right to cautiously wait and see, if the osn isn't actually causing you any difficulties at the moment. The chocolate roulade sounds yummy and well done for doing it in the morning too. I'm useless before noon-utterly useless! I think you are bloody marvelous!  xxx

[scottishlass]

Hi Livlass, Glad you have come back to join us on the best thread on the whole site!  Keep in touch and let us know how you are doing.

I have had a lovely day sitting in our garden with friends and having a glass of wine and something to eat with very old friends. I made a chotolate roulade this morning before they arrived at mid-day. I haven't managed to do that for a while so early in the day! Love to all boney friends. Val

[Jo_BCC]

Hi Livlassie

Welcome back to the forums, and hope that you find our very new forums easier to navigate than the last one!  I'm sure your fellow forum users will offer their support and friendship.

Take care,

Jo, Moderator