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Bone mets - please join in

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Re: Bone mets - please join in

Hi Tulip3,

Welcome to the Breast Cancer Care discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site. While you are waiting for replies I have put for you below links to some of BCC's publications you might find helpful. There's also our freefone helpline where the staff are at hand with that listening ear if you need someone away from the family to talk to. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2. Also, as you have been diagnosed with secondaries you might be interested in joining in our 'live chat' which runs each Tuesday evening on line, I'll also put you the link to that for you to have a look at.

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

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

Live chat:

http://www.breastcancercare.org.uk/community/chat

I hope these help. Take care,

Jo, Facilitator

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Re: Bone mets - please join in

Hi
I have just registered on the site. It was really helpful reading all your positive comments. I was diagnosed three weeks ago with breastcancer & secondary bone mets. Unfortunately I had been told the tumour was non-malignant 4 years ago & had only gone to the Doc's cos' I thought I had pulled a muscle in my side!!
I am now on Tamoxifen and Ibandronic Acid, side effects developing nicely including tiredness & bad indigestion. Did anyone else have a flare up of pain in affected area when they started to take the meds? For a few days I was taking Diclofenac, Codene & paracetomol & it wasn't touching the pain. Thankfully has eased off now.

Re holiday insurance. A lot of companies including Mia wouldn't accept me because it's less than 8 weeks since I was diagnosed. Have now managed to arrange it with Free Spirit at £421.33 for my husband & I for one week to Malta.
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Hi LyndyLoo
Just to let you know that I phoned Mia insurance on Friday for a quote on a cruise in November for 2 weeks in Europe and nearly fell off the chair when they quoted me £89! Was expecting it to be a lot more than this so was really pleased.
Am currently on Herceptin,Pamidronate and exemestane and have liver and bone mets but since finishing Docetaxol in April I have kept quite well and my last scan in June yielded good results. The lady I spoke to said the insurance is only valid 60 days from start date of holiday and a letter is required from my onc to say I am fit to travel (which shouldn't be a problem).
Needless to say, we booked the cruise after that news and knowing I have something wonderful to look forward to will certainly keep my spirits uplifted.
Hope this info helps and that you can get your holiday sorted with a quote from Mia.
Liz x

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Hi Katie2002
Not been on here for a while just reading your comments regarding my saying going for regular check-ups. I go every 3 months to see the oncolgist have done since I finished treatment February 2010. I don't get bone scans very often the only time they scan if I have pain anywhere. Example I had a lot of pain in my hand and wrist since January I happened to mention it in about June this year when I saw the oncolgist. I was sent for a bone scan. It did not show up any nasties. Eventually I was sent to see a rheumatologist turns out it was De Quervain's tenosynovitis and was given a steroid injection which helped a great deal. On a different note still struggling to get a reasonable quote for travel insurance. I tried AllClear Insurance and was quoted nearly a £1,000 which I feel is far too high. The way I look at it I work 4 days a week still managing to go swimming twice a week surely I cannot be that much of a risk for them to quote such high prices. Did try to ring Mia Insurance tonight but they close at 5. Can I ask you ladies what is a realistic quote in your eyes. I would much appreciate your help and advise on this.

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Hi ladies,
Thank you for your comments , well my pet scan results are a little more activity to my ribs and spine so am going to be given falsodex think that it is what it is called once a month and still keep on with the letrozole and zometa hmmm
Does anybody else have this combo and if so what is your experience, and why does it seem as time goes by (9months) does the side effects of letrozole seem to get worse I feel like I have broken thumbs and feet lol.
I think this site is great and would like to become more active on it, but am going to London
For 3 weeks on Tuesday so I hope to try and log on when I can but if not will when I return to Dubai.
Btw will also have my second opinion with my onc in London not that I do not trust my team here.
So ladies be as well as you can take care and thank you once again for a great site that we really do not want to be on by choice.
Big hugs to you all xxx
Amanda( AJ ) ps why do some people have pet scans and others have MRI scans??

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Hi scottishlass,

I will pass on your comments about the chit chat games still being clunky.

Sorry you are having problems starting a new thread. If you click on the subject in the left hand menu where you would like your post to appear, you should be able to see a box to start a new topic. When you click on this it takes you to a page where you have to scroll down for ages before you find the box to type your post.

Hope that works!

Very best wishes

Janet

BCC Moderator

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I WANT TO START A NEW THREAD AND DO NOT KNOW HOW TO DO IT. cAN SOMEONE POINT ME IN THE RIGHT DIRECTION?
tHERE IS A TITLE IN THE LEFT HAND COLUMN THAT READS "Chitcaht Games" and has been going on for years.
But there has been no one on them for 3 days and it used to be a relaxing way to get to know each other through word games.
I wanted to invite old users and new to look it up and join us if they would like to get to know us better.
Can someone cut and paste this or tell me how to srtart a new thread titled "Invitation to join us in word games"
I would also like BCC to take note that the games are still clunky and this part of the site is just not working as well as it could since the changeover. Such a crying shame. As it helps to unwind at the end of a hard day. val

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Ladies, looks like there's lots to catch up on. Hope everyone is ok, especially hope those waiting or worrying get answers soon.

Thinking of you and I hope your weekends are going well xxx
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Good to have you back Esha Ness. I read your post on another thread and delighted you are doing so well. Just wish you woud pop in more as I miss your posts. Good to see you back again. Love Val

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Hi all Bone Mets mates
I have just put a post on Triple negs site by mistake in response to Vals messages.
Still trying to get my head around this maze !
Esha

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AlexD Good to see you posting agian but really sorry to hear the devastating news about your sister. Just to say I am thinking abut you all and hope things improve for you both but realise that it is a poor result. Hugs.
Helen, I have nothing really to add abotu your worry but suggest you make an appointment to get it looked at. It may be something totally unrealated and just an infection that can be easily treated. When we have been bdagnosed with Bc we always expect the worse and sometimes that just isn't he case. Hope it is something easy to deal with an not a nasty.
I have been in all day and spent a lot of time resting and sleeping in bed. Felt very nauseous and am constipated so took a sachet of movicol and am about to take another. (sorry too much info but the first sachet helped and made me feel more comfortable). My Oh has been busy washing down wall in our old upstairs bedroom, scrubbing the carpet, took drawers apart and dusted all the surrounds and behind the units. Well it is all of his own making....he decided to buy a new bed in John Lewis and it gets delivered on Monday. He had moved out good newish bed downstairs to the downstairs bedroom for me after my op to save the climb upstairs so we are leaving that one in the downstairs bedroom now.I can use it in the day if I need a lie down for an hour. Plus we have another spare bedroom upstairs and there is the bed my daughter likes when she stays the night. So we will have a 3 bedded house again. Not had that since we had the two girls at home.
He ran my Yd to her friends. befoe she left she had popped in to see me and we had just had a meal with leftovers which she scoffed with delight and then had the added bonbus of getting a lift to her pal's flat nearby, but akward to get to by public transport. he had been bust ironing before he went out so I managed to stand and watch the iplayer on Tv watching Parade while I finished the shirts and blouses and managed to complete the task and put it all away for him coming back. Well he had been a busy boy. What would I do without him I do not know. He is so patient with me and doesn't complain. I am a lucky lady.
i am still worried about the chest xray and am going to make an appointment with My Gp and my dentist next week. I have something not right in my mouth and have been busy brushing and using mouthwash. But the problem is steil there after 2 /3 weeks so I need him to have a look incase it needs attended especially if I need to re-start chemo. if the xray finds anything I think I need to reconsider things and start the capecitabine sooner than I intented to.
Hope you are all having a peaceful or fun fuilled weekend depending on your health. Much love Val

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Re: Bone mets - please join in

Hi Helen

Sorry you are feeling worried, I am sure others will be along soon to share their thoughts and experiences but just wanted to say that it might be a good idea to call your medical team for their advice or call the Helpline on Monday, they're on 0808 800 6000.

Kind regards

Louise

Facilitator

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Oh sorry also Helen - get yourself checked out and I hope it is something simple and benign like mastitist or whatever the human equivlent is. do let us now.
cyber hug Jacqui

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Hi just catching up with this thread. Val your info about pills vs infusin is really helpful. i am so glad that I am not the only one hating taking the pills - this has really disrupted my mornings and I am rushing off to work with out eating. I take amitriptylne for nerve pain at night - waking up is a real chore as it is without missing my tea. Also now have to add omneprazole to my banquet of pills mid-morning to help with the stomach acid. May ask to try the infusions
Hope things are looking up for you - things do seem to pile up with this disease. I was so p***ed off to find that I had a couple of tumours in my left lung when the CT rresults came in.
Dawn you must be so excited to be able to go into granny mode - I have a new 5month old and she has just kept me going through this latest debacle.
This will probably sound so childish but I have to express this to someone - I am still dithering with regards to starting back on Tamoxifen. I find the though of going back to the night sweats, fluid retention, aching joints thinning hair and weight gain soooo depressing. Still I am sure that crumbling bones and flooded lungs are worse. Yes I know they will probably help to keep me alive but it was so wonderful when I stopped. Oh well for the sake of little Olive I had better get on with it . To nighs the night!!
thanks for for all your informative good humour - Jacqui

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Hi all really hope you are ok val , I'm really scared wondered if anyone can help I woke up this morning and the breast I had lump in 2010 is very pink /red it feels quite hot am so scared this may be inflammatory bc can this happen ? Have been feeling pretty crap last few days feel like have flu like symptoms and aching joints which put down to arimodex I'm panicking like mad x

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Hi everone,

I have not posted for about a month, my internet went down however it is now fixed. A lot has been happening on this thread. Val and LG I hope you are both feeling better, having BC can get you down sometimes. I think we sometimes underestimate the amount of emotional energy that we expend just to put on brave face.

Dawn good to hear that the babies are doing better.
My news is a mixed. My last bone scan and tumour markers show that I have remained stable. It is nearly 4 years since my secondary diagnosis. The bone scan report said that the hot spots were more avid and that this could be caused by the bone healing. Hooray for herceptin.
Last week my sister was diagnosed with secondary breast cancer in her lungs. Fluid has built up and it is malignant. Her primary dx was in 2005, she was 33. She had only recently been signed off by the oncologist. We have the same oncologist. I am absolutely heartbrokeon by her diagnosis, for some reason it is worse when it happens to another member of your family. She has 3 children aged, 12, 8 and 18 months. I think I feel so devastated for her because I know what it feels like to have a secondary BC diagnosis.
I am now going to do some therapeutic baking to try and lift my mood a bit.
AlexD

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Na7asha - great news about the start date for chemo. What are you going to be on? It's like someone else said to you- it is doable.
I went into work today - I am hoping to return at the start of December. My boss was lovely and very understanding about me wanting to go part time.
Anyway hope everyone has a good weekend xx

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Oh Val - one thing after another for you at the moment, isn't it? Don't be so hard on yourself and remember all the advice you give to us!!!! Hope you do get some sort of answer today and don't have the uncertainty of not knowing over the weekend. It's that awful waiting game. Big hugs xx

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Goodness Val, cancer is a long twisty road isn't it. Hope you do hear back from them today and you get answers and a plan if you need one. Thinking of you xxx

I'm finally starting chemo, 24th so in just over a week. Apprehensive but keen as mustard to get on with it.

Roll on the weekend and love to all xxx
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Hi Val,

Just wanted to say that I will be thinking of you. I do so hope you get answers today and that everything is ok.

Katie x

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Oh Val, sorry you're still not feeling right. No point trying to second guess what, if anything, is up with your lung. As you and others on here frequently say it's the uncertainty rather than the knowing that is so unsettling. Hope you get an answer today and are not left wondering and worrying over the weekend. Needless to say, hope there is nothing seriously amiss. Best wishes x

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Hi Girls, Good to have you back from your second Honeymoon Liz. Bet you wish you were still there!
Well I don't know what to think...I went to see my Oncologist. She asked me how I was. I explained that the hip replacement had gone well and scar healing beautifully but I felt low and everything I do seems such an effort. I didn't tel her I was swearing trying to get ready this morning as my OH has decided to move furniture around upstairs and everything I wanted was in the other room! I was running late so that didn't help! But I just feel narky more than usual!
She asked me how my chest was. I said fine. But I do feel puffed when doing things. I also told her that I wondered if my HB was ok as I needed a blood transfusion in hosp after op. It was 9.5 today and she said that was ok. I told her that I get frustrated as everything seems such and effort and I just cannot manage to do things and had to rely on my husband to do so much for me. That my head wanted to do stuff but I do not have the energy to start anything.
She sounded my chest and got the student doc to do the same. The student nurse thought she could hear sonmething in my lower lung. My Consultant said she thought I was not getting the full capacity in one of my lungs and sent me for an Xray. I had that done this morning. She will try to phone me with results today, if not it will be Monday.....I just did not expect that at all... She has delayed the chemo becaue when she asked me I told her I did not think I could cope with it right now because of lack of apetite etc. She she has put me on a 2 week course of steroids in the hope that it will improve my appetite and my mood too. Now I felt low enough before I went to see her but now I have a new worry to contend with. I do feel better for telling her about it all. Will keep in touch with you all over the weekend. Hope you all have a good one. Love V

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Hi All,
Not been on for a while as we had our belated Honeymoon ! Had a lovely time in Italy .

Saying Hi to all the ladies i know on here and sending my very best wishes to the ones i have not seen before .

Going through the few weeks of ct's and bone scans so am having a real wooble. Sometimes i wish we did'nt have to have them as i am feeling pretty good at the mo and everytime i see the onc and have the tests i feel right back at the beginning of the diagnoses again. As my Husband says 'They are a neccesery evil' !! Think controling the brain is the biggest part for me. My friend has given me a huge bag of runnerbeans and a recipe for chutney!!! so hopefully that will keep me busy for a few hours :cathappy:

hope everyone has a peaceful day
xx

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Just popping here quickly to congratulate Lemongrove. Enjoy the time with your family.
Val, was it you who asked about recommendation for free Kindle books. I receive an alert with all the freebooks, and I have to admit, from the titles not many appealed to me. I downloaded a couple which I were really badly written.
More often than not I use the free books to get the classics that I want to read again. However one day I downloaded a book, which was called Invisible (Ivy Malone mystery series #1) by Lorena McCourt. It was a very easy read, which I thoroughly enjoyed.
I found taking ibandronic acid so much easier than Pamidronate via IV. I get up, take my tablets, get the kids sorted, take them to school, then I have my breakfast accompanied with letrozole and Vitamin D and Glucosamine. Another advantage is that I don't need to go to the hospital for herceptin any longer, I have it at home.
Take care everyone.

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Aaargh, just lost a mostly written post

Katie - have emailed you. Zometa has been good for me and it's not a case of them thinking things are too far gone at all.
Amanda Jayne - think I've friended you via FB. Hope the zometa has worked for you. I've just had worry over possible spread - imagined it was all over but all the scans just showed a small amount of spread in spine and hips so that's good!! The pain is from the met in my spine pressing on nerves and muscles but I am managing on a couple of painkillers a day and go back in 3 months if I stay the same.

Na7asha - even now I often think the whole cancer thing is a surreal experience and that somehow I've fooled all the medics etc and conned them into getting me early retirement from work on full pension. Bizarre I know but.......Think it's because most of the time I feel ok (am so grateful for that) and as people say 'Ooh, you do look well'.

Liz x

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Hi Amanda-Jayne,

Im not sure if your earlier post was directed at anyone specific, but I live in Oman! Having said that, I have the majority of my treatment back in the Uk ( at the Christie, along with many others on here).

I quite understand your panic, but as Val says, tumour markers can change for many reasons. If the scan confirms your fears that the pain is an indication of some change, then your treatment may be changed to something stronger to lower the cancer load in your body, then switch you back to a maintenance type regime again. That has happened a couple of times with me so far. Last autumn I had Abraxane intravenously along with Xeloda oral chemo for 8 cycles, and since then have been on xeloda alone which is great as I take the tablets with me to Oman and get in touch with my oncologist by email if necessary. I'm currently returning to the uk every 8-9 weeks for a check up, but with a son at boarding school and a daughter about to start university, both in the uk, I find it all works in quite well and I try to time visits to coincide with holidays or parent meetings or whatever.

The treatment I had in Oman was very good - I was initially diagnosed here just over 4 years ago, by a very persistent doctor who knew instinctively that there was something wrong despite an initial "clear" diagnosis, and since then I have also had zometa transfusions, port cleaning and a variety of scans at a major hospital here. Our family circumstances were part of the decision to have treatment at the Christie, and now that I am surrounded by such a fantastic team there I would be very reluctant to change, but interestingly my initial treatment as determined by them was identical to what had been recommended to me by the oncologist in Oman.

I seyh that you get your results today - I hope your news is good, but whatever the outcome it is better to know for sure and have the specific tailored treatment to address whatever your current situation turns out to be. Best wishes - let us know how you get on

Jx

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Do not worry AJ. Tumour Markers can rise for all sorts of reasons and do not mean that things are on a spiral downwards. You sound as if you are on thge smae meds as I am right now. keep in touch with us to let us know how you are doing but do not panic. Good luck for tomorrow. Maybe you just need a tweak in your pain meds. Hugs, val

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Thank you

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Hi AmandaJayne

I have deleted your duplicate posts.

Best wishes Sam, BCC Facilitator

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So sorry do not know why my post has shown up so many times..

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Hello ladies,
I have posted on here before about 7 months ago and then lost the thread , just a little bit about me was dx with bc in dec2007 had lumpectomy , and rads and tamoxifen for 5 years, started getting pain in my ribs and back last sept but was told it was this that and the other went to see breast surgeon in dec and was sent for a bone scan and presto was dx with wide spread bone mets,Was put on zometa every 4 weeks and taken off tamoxifen and put on letrozole no pain after that and have had pet scans in march showed stable and tumour markers good another pet scan in June also showed the same as march but tumour markers had risen so had another pet scan yesterday and tumour markers risen will get results tomorrow and feel very worried as I have been having more pain in the last 5 weeks.
I live in Dubai and have a very good onc and also had second opinion in London when back there in march but I have now gone back to panick mode. Sorry for the ramble. X

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Hi just wanted to know if you live in Oman, I live in Dubai , how is you treatment there?
Amanda

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Also irrational - but I frequently daydream that this is all a horrible mistake. That they've misinterpretted my scans and that the next time they check they will have mysteriously vanished. Suspect you all do that though :catsad:

Would be satisfied with one of the many trials they do actually finding something that can help though. Don't see why that can't be true?
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Dawn, very good to hear. time to relax and start enjoying being a granny eh.

Katie - wish I could 'like' your comment about stockings with days of the week on them :cathappy: They are pretty hideous, maybe there's a pitch to dragons den in it???

Completely with you on the fretting that the bugger can be romping through me while I'm waiting for treatment. Is so scary but I try and tell myself that in these early days while we get used to how it all feels we'll assume the worst of every niggle. Dunno. I never got ill before, if things got bad the most I'd usually do was visit the pharmacy for advice. When I started this journey I hadn't expected to actually 'want' chemo. Like you I just want to get on with drugs so that I can get on with fighting this disease. I figure that if things were bad I'd have been sent for chemo quicker, instead of trying out hormones first.

I expect it's normal to be completely irrational though??? Not that you're being irrational, am describing myself.

Trust that the medical team have your back but if you are worried why don't you discuss it with your BC nurse, or ring the helpline?
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Dawn - that is brilliant news about the twins being home together. I remember bringing my daughter home from SCBU and it is such a great feeling.

Val - You are brilliant! Just read your post about how you are getting on. No-one would ever think it was only 3 weeks ago since your op. Don't envy you with support stockings though - do they supply different colours or ones with the days of the week on!!!!
I've just had a phone call from my BCN telling me to stop taking the bone strengthening tablets. There has been a mix up! My onc wrote to my GP in August prescribing tablets but since has changed his mind. My GP unaware of this says he got the letter of the 4th Sept and thats why he called me in to talk through taking them etc. It seems I am to have Zometa instead starting on the 26th. I won't be sorry to stop taking them as I hated not being able to have my coffee first thing and trying to stay upright but on the other hand feel like I am yet again waiting to start another drug to battle with this disease. I am worried that while I'm waiting it's spreading. I just want to get on with it. Has anyone else experienced similar experiences? Part of my darker thoughts lead me to think maybe it's so advanced they can't be bothered and there is no point. I just don't feel overly confident in the system.
On plus point nice young radiologist was there this morning. Another rad ticked off.

Katie x

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I just wanted to share a bit of good news that has made me so happy today. My daughter has phoned to say that her little boy is coming home to join his twin today. :cathappy: He passed the sleep test and is getting by without needing oxygen at long last. I think she has been so brave and strong through all this pregnancy/birth which has been so very hard for her. In case you missed it earlier - they were 3mths premature at just overy 28wks!!! so truly our little miracle grandchildren. They are now about 10 wks. They are all coming down to stay with us for a couple of days tomorrow as well so at long long last I shall get my cuddles.

Still waiting to hear from rads about my lost of use of my upper arm! and have to call the onc tomorrow if I havent heard yet. I absolutely hate having to be on steroids and although I negotiated for a lower dose!!! it still affects me quite a bit. I have gone from my pain meds making me very sleepy a lot of the time to now not being able to sleep because of the dex! Crazy isn't it. But at least the new problem isn't causing any pain!

Dawn
xx

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Val, glad things are improving for you and you sound a bit more chirpy today.

Quality STreet, I think Val has given you all the informaiton you might need for the time being.

As to oral or infusion bone strengthening drugs, I cannot take oral ones as I have severe reflux. I tried them some years ago as I went into oestopenic range - side effect of Arimidex - but my reflux caused burning of the oesophagus. I tried Zometa, but was very allergic to this, quite rare I believe. Am now waiting to try out a very new drug, which has similar effects on bone health. BTW, I should mention that after I came off Arimidex , my bone health imoroved dramaticalaly, my latest Dexa scan showed bone health was as good as it was 12 years ao!

Take care everyone.

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Hello Quality Street/ Gen, First of all I am not sure what treatment will happen first for you. I was on Chemo (Tablets) when I needed to have a hip replacement because of bone mets.I too have extensive bone mets in my spine ribs thorax and pelvis, the pelvis being the worst area.
I had my hip replacement on August 17th which is just over 3 weeks ago. The surgeon had to postpone the op for a week because I had just finished round 8 of chemo and my Oncologist said that my bloods needed time to recover before he operated. I am doing well and had the op done by spinal block a bit like an epidural) but I was also sedated and do not remember anything at all about the op. My last memory is being in the room outside the theatre, then nothing until I was being wheeled out to the recovery room. They said it would be better for me to have the op done this way rather than a general anesthetic.
The Oncologist often change the hormone tablets. I was on Aromasin but am now on a similar drug called Femara ( also called Letrozol). So do not worry about going on to a different hormone blocking tablet. You asked about the chemo tablets they will be starting you on. Well it could be Capecitabine (Xeloda) which a few of us are taking. This is an easier form of chemo and doesn't usually cause terrible side effects. There is a thread on here that talks about the drug. I had sore hands and feet when I first had this chemo so they reduced the dose and things have been much better since. My appetite was affected and I just wanted to eat small amounts of food throughout the day. If this is the chemo they have in mind for you, you take the pills for 2 weeks and then have a week off them and that week is usually better. They will suppoly you with tablets incase you feel sick or have loose stools.
Most of us also have bone strengthening treatment. This can be by infusion through a drip, a drug called Zolidronate (Zometa) or by pill form called Bondronate. I do not know if you are on these already. if I can help in any way feel free to ask any questions as they arise. We are a very supportive and caring bunch on here and we all support each other and share information and hold each others hands when we are low.
My operation has gone really well but I do not see my surgeon again until 4th October which is 6 weeks after the operation. I have recently had delivery of a wheelchair which I can wheel around myself or my husband can push me.I get quite tired usually when I am out and about so this allows me to do more and rest while being out at the shops.But I am using elbow crutches all the time but around the house I sometimes use just one crutch. I can now go up and down stairs and have a shower again. I have a board they supplied that fits across the bath so I can sit and have a shower and wash my hair. I also have raised seats on the 2 loos in the house as most toilets are too low when you have had a hip replacement. I am on good painkillers and am managing to use less of them now. But always take one when I get up in the morning and when I go to bed at night. I need to sleep with a pillow between my legs. I also need to lift my operated leg/hip into the bed but this is becoming easier day by day. I also have to were supprt stockings for about 6 weeks I think it is.
Well I have probabaly overloaded you with information! Hope your operation goes as well as mine did. The scar has healed well and I had staples in which were removed at home by the Pracice Nurse. Never felt a thing. Val

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Hi Quality Street - I have also had a hip replacement. It was done as an emergency, because my neck of femur broke, when I rolled over in bed. I had been going backwards and forwards to my GP and Oncologist, complaining of pain, which got worse despite radiotherapy. They did x-rays, but couldn't see anything particularly sinister. Have to say, it rather destroyed my faith in scans and x-rays, but I have discussed this with my oncologist. I had it done in May, and I am recovering very well. I even went to the USA in July! Still walking with one stick outside, but can manage no sticks indoors. I have also had some physio, which has helped, but basically, it is just time...and I'm not a very patient person!
Isobel

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Re: Bone mets - please join in

Hi quality street, I have had a hip replacement for mets to pelvis. I had first diagnosis of BC in 2005 with a mastectomy and lymph node clearance, chemo, radiotherapy and then hormone tablets (tamoxifen for 2 years and arimidex for 3). Then, following hip pain from about May last year, eventually diagnosed with bone mets to right hip and I had a hip replacement in November last year. This was followed by a short course of radiotherapy to right hip and to lumbar 4 vertebra. There are other spots in my spine. I am now on a different hormone tablet - exemestane (aromasin) - and 6 weekly infusions of pamidronate (bone strengthening bisphosphonate). If you have any queries about the hip replacement please ask. There are several ladies on here who have had hip replacements. all the best for your treatment.

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Hello, am new to postings but has anybody had to have hip replacement for bone mets to pelvis. Just toldyesterday that both hips affected but one is very high risk of fracture so op is imminent. Recently had radiotherapy to spine but lots of new spots have been found on latest scan . Also about to start chemo. Tablets after op. is anybody taking theses. Have been taken off aromasin as they don't work. Hope somebody can give me some info, you all sound like such a friendly, caring group. Thanks. Gen xx

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Katie, that sounds like a lovely way to spend the morning. Must have been good for the soul :cathappy:

If your employer is willing to be flexible you'll be fine. I normally look after a team of people so this feel a little like a demotion but I mustn't complain. You know he even asked HR if there was a course they could go on to better understand my needs. How amazing is that???

Am going to make a plan to go back once I know how the chemo will affect me, part time to start with and see how I go. Of course, nothing has gone quite to plan for some time so I may eat my words eh.

Sleep well ladies xxx
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Na7asha, I know what you mean about feeling normal. I went into work this morning and it felt great. I popped into Reception class and ended up in there a while singing. Bless em - my singing is terrible. My boss has also been brill but have made an appointment to see him on Friday. Going to talk about my return and whether it'll be possible to go part time. Not sure though how this will work as I am also assistant head. Oh well I am sure there will be a way round things there usually is. Your work sounds very interesting. When are you hoping to return?
I'm off to bed now. A wave of tiredness has come over me. I think the thought of a very early morning to get to my 8.30 appt has made it worse! Goodness help me when I have to get up for work.
Night everyone x

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Val you are an absolute star taking the time to go through this with me and you don't ramble. I will inform my dentist. I know I have to stay upright but it is ok to sit upright too isn't it? My BCN is chasing up why only 7 tablets - fingers crossed she should find out tomorrow. Like you I like my breakfast and a brew first thing. I'm awful enough in the morning as it is - it takes me ages to wake up.
Anyway more importantly I hope you are feeling better today.
Katie x

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Hi Katie
I've been taking Bondronate since day one, and have got a bit of a system going. I wake, take my pill...make hubby a coffee and aettle back in bed with a laptop for an hour. Works fine for hubby but it means it takes me hours to get out of bed as I then give myself time to relax with a coffee in bed. :cathappy: All fine while am off work but I'm going to have to be up at at em again as I intend to go back soon. Don't know how you'll cope with a small person to look after though, am sure you'll find a system.

I popped back into work this afternoon to how my face. Was dreading it but it was actually really good to do something normal again, and be more my old self. I work in marketing an have an amazing boss who has an idea that I can work on my own projects so I can come & go as I please. Work or not, am very lucky.
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Hi Katie, I have been on both types of Bone Strengtheners. First it was introvenous Pamidronate then they changed it to Zolidronate and then I tried the Bondronate tablets for a while. There are definite pros and cons with the introvenous type and the pills. I prefer the Infusion to the pills as I found that the constant having to keep upright for an hour and not taking other tablets for half and hour, and not being able to lie down and having to wait to have my breakfast a right pain.
But the plus of the pills was that I could go away for a long holiday to France without having to return for my infusion. It is essential that you do remain upright because I have been told it can affect your osophagus if you don't. I like nothing better than getting a cup of tea and some toast in bed in the morning and reclining to read a chapter of my book. On the tablets I disliked having to wait for breakfast and couldn't lie down after the Bondronate. But it does suit some patients so you will probably need to give both a try. I do not know why you only got 7 tablets but people with Osteoporosis get the Biphosphonates (I think they only take one tablet a week) so I wonder if there was a mix up for that reason. I used to get a box with four strips if tablets in it.
It is also important to tel your dentist that you are on these drugs and to avoid tooth extractions if at all possible. Many dentists refer people on Biphosphonates to the dental hospital. perhaos i have given you too much information so can give you more at a later date. As long as you keep in the back of your mind about the extraction of teeth you shoould be fine.
Yu can also chop and change from the infusion to the tablets if you wish and your Oncologist agrees to it. I have been on the tablets and back on to the infusion quite a few times. But I am on Zolidronate now. Sorry for rambling! Val

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Thanks Lizcat and Val - I really will look into applying for DLA.
Hope everyone is ok? Lovely young male radiographer wasn't there today - d'oh! Got given an appointment time of half 8 in the morning tomorrow - yuk! Am rubbish at getting up. Just started my Ibandronic acid tablets this morning - it was bad enough trying to stay upright after taking it. Didn't realise how many times I bend in the morning trying to get ready and out for the school run! I've only been prescribed 7 tablets which the pharmacist thought was odd. Waiting to hear from BCN to see why only 7. I presumed, probably wrongly, that I would be taking them more than 7 days.
Just got off phone from BCN she doesn't know either as she thought I was down for Zometa. She'll check with onc tomorrow. Oh well - it just seems all mad as cheese. I should really ask for copies of letters etc. I know I say I want to be in blissful ignorance - up to now that has been my coping strategy - as has denial if I'm honest. But when things like this tablet/infusion scenario happen I should have a copy of letter to understand rationale etc. Hope you catch my drift. I recognise that I do have to take an interest so I feel more empowered and knowledgable.
Oh I am going on a bit. Sorry! Think I will take a walk to the library. Need a good book!
Katie x

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Val, sorry you are feeling so low at the moment, but as the others have said, you've had such a lot to cope with. ANd your hip op is a major trauma to your body.
But I know what you mean. I too am - and aleays have been - an extremely active and 'busy' person, and my energy levels are rubbish now. I get tired about 3pm and my brain just swtiches off - LOL. ,My BC nurse said that this is 'normal' cancer tiredness and although my mets were only recently diagnosed, they were probably lurking for a long time before. I also have thyroid problems, and although my meds are now working (took 3 years to get the dosage right), I generally feel sluggish, overweight and less energetic. And the Letrozole does not help - back to flushes, night sweats and general bone and joint pains.

Lemongrove, yes I am aware that NICE has now approved Denosumab, but my hospital is waiting to get approal from the manufacturers, which they told me will come through in October. I am under a major cancer centre, my illness falls into the approved group, so I should get it. Whether it suits me is another matter altogether.

DLA - I've been getting this for years for another problem with my hands and arms - the personal care component, but have been told that if/when my mobility gets worse, I can apply for the other rate as well. I also have lymphoedema, which makes general every day tasks difficult and - ike you Val - am very reliant on my OH to help with every taks. Plus I broke a rib earl;ier int he year, and that has taken ages to heal up, so I was in a lot of discomfort for quite a few months. I think I will use my DLA money from now on to pay for help with housework etc. and then my OH can concentrate on gardening and other chores - and hopefully we can have days out rather that always working around the house.

As to copies of reports etc. I have asked (and get) copies of any correspondence and as I have my b/t done at the surgery, ak them to put a code on the hospital form so they get a copy as well, which I in turn can collect. I am the sort of person who likes to 'know' and feel happier to keep an overall eye on how things are going. But I can see why some might prefer to live in some sort of 'ignorance' - bliss and all that. But we are all different. So no criticism intended.

Take care everyone.

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Hi. Na7asha. I've posted on the Coventry thread. Perhaps we could meet up?

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I totally agree with Lizcat's post Katie. I did not know for a long long time anything about DLA until a friend who worked in the DHSS asked me why I was not claiming for it. I never looked back and it made a HUGE difference to my life as at that point I was unable to work and still had a mortgage and other household bills to pay. I also have a Blue Badge and would encourage all people with mets to apply for one. You need not use it all the time but on those days when you are just zapped of energy it allows you to get near the door of the supermarket/hospital/doctor's without wearing yourself out. I sometimes got some weird looks from people and once had an altercation with an elderly gentleman who asked me if I realised that I was parking in a disabled space outside the library! Boy did I tell him what exactly was wrong with me and it had him blushing so I hope he thinks twice about tackling someone else about it. Never feel that you shouldn't apply for things like DLA. People have campainged for years to allow us to have such a benefit and it helps to take away the money worries leaving us to get on with treatments etc. Think about it. You have NOTHING to lose from applying for it and if they say no you can still appeal against their decision. No need to give up at the first hurdle. Take care, val