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Bone mets - please join in

nicky08
Community Champion

Re: Bone mets - please join in

Hi Wilson52
If you are worried about any pain that has been around for a while it would be worth being checked out by your GP or BC team. It is always worrying and the only way to get past this is to be checked - even though we don't want that either! There are also many reasons for pain - after my secondary (bone) BC was diagnosed and following my chemo I felt awful across my back. In the end it turned out to be tension that was helped away by some aromatherapy treatment.
Good luck and I hope nothing comes of it
Nicky x

scottishlass
Member

Re: Bone mets - please join in

Potmaid I have sent you a PM.

Wilson_52
Member

Re: Bone mets - please join in

Hi not sure if this is the right thread to post.
For the past 2 months have had a dull ache between my shoulder blades. At times it's like someone's stuck a knife in my back. Worse as the day goes on and aware of it just lying in bed. Have to take pain killers sometimes but not always. It's 1 1/2 years since mx.
Not sure whether to be worried or not.
Thanks.
Wx

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Hi there
Not sure if you remember but I had a single radiation blast to my left hip and back last week on Tuesday. Made me very sick immediately afterwards but as time has gone on I am increasing pain in the buttocks area and down my left leg, seems no amount of morphine or tramadol will even take the edge off it.
Finding it so difficult to get around, even around the house with a stick!
I am on oramorph at the moment but wishing I had picked up the tablets ordered for me at the health centre..........I'm really not getting the self medication as nothing seems to be shifting the pain but perhaps I am being too sparing.....
Just thought I'd have a moan, sorry ladies
Clare x

Mackers
Member

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Hi

Just thought I would give you an update.... Nothing to report, not as tired and have had 5 radiation treatments now... I didn't realise I thought they did area by area but they don't they radiate the same area.... 12 times in my case...

Haven't heard back from the Dla yet, but they said it is now with the decision maker?!

Hope everyone is ok and enjoying the weekend
Tracy xxxxxx

Lemongrove
Member

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Hello Racer, pleased to read that you're having the primary removed. My Onc say's there is very strong evidence that removal of the primary can greatly extend survival. Very best wishes for the future.

racer
Member

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Hi everyone, thought I would update u with my visit to the Surgeon. He has agreed for me to have a mastectomy and lymph nodes removed. He said that they don't normally do this but because I have responded well at mo to meds they feel that it will benefit me in the long run. So booked in for 5th, May.....if this gives me more time I am going for it !

I have another session of rt on top of my back this time. I am trying to be prepared because last time I had rt on lower back I was really sick and in a bit of pain so a bit apprehensive. So I have spoke to Macmillan Nurse and she has requested a different anti-sickness med that I need to take day before. Hopefully I should be ok.

It helps to see everyone has similar experiences and we are able to share advice. I will keep you updated with how I go on next week. Take care everyone xxx

sweetanimo
Member

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Thank you so much Crawfo64 and Esha Ness for your reassurances re declaring secondaries when starting new jobs. Crawfo, so sorry to hear about your epilepsy experiences - totally ridiculous re the H&S take on this.. Esha Ness, good to hear your employers' reactions - this is exactly what should happen in good companies and sorry to hear re your SEs - I think you are all amazing, I have very few SEs at the moment and still manage to forget what I've remembered! LOL!

xxx

scottishlass
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Hello Esha Ness, Although I am not on Capecitabine right now I have been on 2 courses before. I suffered from severe hand and foot syndrome and my Oncologist had to reduce my tablets too. When I went on to the second course 18 months later, she started me on this reduced dose.
I did find however that I was doing things wrong. For example because my feet were so painful I was really rubbing the cream well into the soles of my feet. This was not a good idea. Yes you should apply cream but if you rub too much it can burst the capileries in the blood and that made my feet worse. So when I went to bed I gently applied LOTS of cream and then put on soft cotton socks to allow the cream to soak in. It also kept the bed lined cleaner!
Another thing was I wore those slippers like boots. Wrong again....try to keep your feet cool if you can. I wore sandels most of the time. I hope this helps you. If you have any other questions, just ask or PM me if you prefer. Love Val

belinda
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Hi Esha Ness, great to hear your 2nd cycle went better. Those blisters sounded so painful. x

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Sweetanimo, I have changed my jobs a number of times and every time I had to have a OT report. It wasn't a problem though, I got accepted for the job first and then got a letter asking me to go for a medical which most times turned out to be just a chat with an occupational therapist. I have epilepsy as well though and I was never sure which condition had rung alarm bells with the new employer. I didn't see it as a problem but as an opportunity to make sure my new working conditions would be suitable.

I have had some bad experiences but they have always been about the epilepsy. Things like people telling me I couldn't be in a room by myself or wasn't allowed to stand on a stepping stool that was about one foot off the ground which was hilarious since I drove in to work every morning. Or another time when my boss told me she had invited the H & S manager to a meeting about whether I was a danger to myself or others, but I wasn't allowed to intend it, or the time when I worked in a school and was told I couldn't work with the kids in case I upset them. I could go on.

X

Esha_Ness
Member

Re: Bone mets - please join in

Hi Sweet Amino and all
Re applying for jobs and Cancer diagnosis, I have always been up front about my Cancer diagnosis dated back to my primary diagnosis in 2000(and secondary diagnosis 2010 ) and employees are not allowed to discriminate.Employers have always been receptive and I have always been open about my capacity to do the job.
If you are in post they are obliged to alter you working conditions to make allowance for you. I think it has sometimes worked in my favour in that employers have been on the ball with the Disability Discrimination Act.

Just another thing for all Capecitamine takers... Marif, Belinda,Dugsy, Francis ???? and others .
I am just at the end of 2nd cycle and on rest week. The Oncologist adjusted my dose after the first cycle of full blast from 8 tablets a day to 6 tablets a day.
I have tolerated the second cycle better. Side effects being intermittent loss of sensation and slight skin peeling on tips of fingers, mouth ulcer, slight blood when blowing my nose and significant sensitivity to the sun affecting my skin. Huge feet blisters form first cycle have gone thank goodness as I could hardly walk !!My memory is appalling at the moment and sometimes cant even remember what I have forgotten !!
I think we are an amazing bunch of women living with all of this. Yet again I want to say what a huge amount of support I get from this forum. Thankyou to you all.

sweetanimo
Member

Re: Bone mets - please join in

I went to my first Zumba class yesterday and really enjoyed it! Not sure if there are any exercise contraindications for us with bone mets but figured the benefits would probably outweigh them. Feeling a tad weary today though!

Also wondered if anyone has had any experience of completing medical questionnaires etc.. when applying or accepting new jobs?

xx

pumpkin69
Member

Re: Bone mets - please join in

Hi all, made me feel a bit better that some of you other met ladies are find it difficult to remember things, i also don't like to keep asking questions that have probably been answered a million times, and find myself going over old posts to try and remember who has what.

Could i ask if any of you have had rads to lower spine and if so did it cause nausea and how long did it last? they gave me steroids to keep inflamation in spine down and said it would help with the nauses too, rads finished a week ago, but been feeling really dizzy and nauseas since sunday, and sooo tired.

Seeing my onc on thurs to find out when chemo will start, i had fec first time and wasn't to bad, but heard tax is much worse, dreading it.

Hope you are all well and having a good day.

Pumpkin x

Lemongrove
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Mackers you're not alone on the tiredness front, and nobody objects to you talking about it. With the lovely weather recently I spent a whole day doing loads of jobs in the garden, but the next day I was so tired I slept virtually all day. Most of the time, I kid myself that everything is normal, but on day's like that I realise it's not.

Mackers
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Re: Bone mets - please join in

Hi

I think the problem is I'm sleeping in the day up all night...am going to try and keep awake all day today!!!

Only another two weeks to go!!! Half term as well my friends took my little boy to Legoland today, i just couldnt do it we only live round the corner from it, so at least he's having good time which is all that matters to me really.

Right from now on...I'm focusing.. Concentrating!!! What's going on!!! Lol

Xxxxx

Ps finty good idea.. I could think of a very good footnote for myself at the moment!!

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Re: Bone mets - please join in

hi fran
I reckon the more moderate exercise you can manage the better your mets feel,also your meds may be having a good effect.
Thanks for all your words of encouragement for my scan on monday. i guess i just felt a bit overwhelmed. I went early, got there at 5.45 for appt at 6.15. Less traffic than expected. I prepared for a long wait............ was called almost straight away and out by 6.10. Now THERE's efficiency lol. Worth a note though, the scanner waiting area is very public so i refuse to put on the gaping at the back gown. I go unfettered with a pair of pull on linen trousers, so no metal.The radiographer said'just put on this gown' me, 'no thanks. i have no metal bits' and smiled sweetly at him. 'Fantastic. come on through'
It wouldn't work with MRI cos it would be too hot, but i reckon i made his job easier. And oh the power lol.
x sarah

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Mackers - thanks for making me feel better about not remembering about people but sorry it's bothering you so much. I've always needed to meet people and see faces to remember names so find remembering on this forum really difficult; feel I probably repeat myself a lot too... Don't worry it helps me to have you recap things and ask questions again. Hope today's a pretty good day for everyone.

Does anyone know - do bone mets flair and then settle down? My hip was painful for a week and my lower back for another week and scan shows mets in these places - but this week (fingers crossed) it's all calmed down - is this normal? Trying to make the most of less pain and am getting out for some exercise - even if it is very slow walking it's good to get into the spring weather!
Fran

finty
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Good point Dawn! finty x

dawnhc
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Re: Bone mets - please join in

Honestly mackers I wouldn't worry about it at all. I really hope you won't just stop posting as I really don't think it matters if we need to keep asking. I really sympathise with you over the tiredness. It makes you feel so helpless - mine isn't coming from treatment in the way yours is, but rather from the amount of pain meds that just leaves me nodding off all the time. I have taken occasionally to using amphetamines the hospice asked my GP to prescribe but I really hate relying on them so leave them for just days when I have to be alert - like doing the business accounts once a quarter! can't afford to fall asleep over those.

Finty I had noticed that on the American sites. Some of the members on bcpals do it now as well and it can be very useful. People would get tired of seeing how much space mine would take up though!

Dawn
xx

Mackers
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Re: Bone mets - please join in

Hi Dawn

Really sorry, but I am so tired I keep getting things confused and forgetting everything. I keep sleeping... Out of all the things the radiotherapy has just knocked me out...I think it's all the treatments in a such a relatively short space of time...

Probably best if I just read the posts rather than posting as i confuse everyone else...!!!

I have been on herceptin as I had it with Fec and Taxotere I have it on its own now, but what I mean was mon wed friday radiotherapy and Thursday herceptin, so full on week...

I am fine in myself, feel really well, just get very tired... So please ignore my rambling just having on of those days, weeks!!!

Love to everyone xxxx

belinda
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Welcome Sue, I wish you, I and everyone else didn't have to be here but this is a very supportive thread..Good Luck with the scan..x

finty
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Mackers, Dawn I sometimes wish we did what a lot of the American forums do - have an automatic signature line at the bottom of each post with a brief synopsis of people's cancer history for those that want to post it - it's really useful to know and avoids a lot of repetition.

dawnhc
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Re: Bone mets - please join in

LOL @ Mackers 🙂 - I actually mentioned herceptin in the post before yours. But of course I don't mind you asking. I find it very difficult to remember what everyone is on - even just on this thread. What about yourself - are you just starting on herceptin for the first time on Thursday? If so be prepared for a long day. They tend to keep you in a few hours to make sure you don't have a reaction. But don't panic 'cos very few do.

Dawn
xx

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hi dawnhc i see that you are treated at the marsden, is this because you come under that area anyway or did you ask to be referred there.
thanks everyone for your replies to my questions, being a bc and mets virgin i have lots of questions so i may ramble somewhat at times forgive me sue

Mackers
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Re: Bone mets - please join in

Hi Dawn,

Sure you hv told me, hope u dont mind me asking again are you on herceptin also? I'm hving radiotherapy on my chest every other day and don't know why but I'm exhausted and I've got herceptin Thursday!!!

Txxxx

dawnhc
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Hi Sue and welcome to the thread :). I think this is a really supportive thread for anyone with bone mets. I think the practice of seeing different oncs is pretty commonplace. I have been treated at the Marsden for 21 years now!! and yes, I have a consultant I am under but he has several oncologists under him. I gather they discuss each patient together and then in the clinic they operate out of a satellite room and it looks to me like pot luck which one you get. But like Fran says if I have an issue I want to discuss with the consultant I have only to ask. I am on intravenous bisphosphonates. Originally on Pamidronate but then last year switched to Zometa which I have every 3 weeks along with herceptin. I have never had a break from the bisophos. since I started them in 2003.

Dawn
xx

Mackers
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Hi fran,

Just read your latest post and sorry don't know all background story. As far as I am aware Zometa and the such like only help to repair the bone and maintains them where the cancer had destroyed it. As I say i don't know your previous experiences, but might it be an idea to ask about a different hormone treatment if ur getting progression, if ur are Er or Pr + as they directly deal with the cancer. Or failing that radiation. I am taking the tablets and they seem to do the job for me... Just a thought.. I think Zometa is a big issue with us, as some ladies get it due to area and others don't... I asked my onc and said truthfully are the tablets as effective and he said absolutely, but you have to take them exactly as directed. I was so desperate in the beginning I offered to pay for it and he said there wasn't any reason to pay out money when I really didn't need to... I am inclined to believe him... As I trust him with my health and obviously he knows what he's doing... Sometimes I can see a little smile when I hv read everyones post and go to him with my list of drugs and latest technology I THINK I should be taking/having.. He is very respectful and tactfully says after you've got over your mx, chemo, herceptin, tamoxifen and bone juice, we will review it, my husband thinks he has the patience of a saint when dealing with me!!!!

Hope you don't think I'm overstepping the mark, but I know exactly how you feel and the same thoughts go through my head...

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Thanks to those who have gone on to discuss the weight and Zometa issues that I raised - it's given me further thoughts about asking for more Zometa since last bone scan did show mets in hip and lower back where I get pain occasionally.

Good luck Alex with ablation issue - my consultant is referring me too after a bit of prompting - like you, I feel it would be good to remove individuasl tumours if at all possible in a more aggressive way than just using systemic chemo.

Fran

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Welcome to this thread Sue - although sorry to know that you are coping with bone mets too. Like you I never seem to meet with my own consultant - I was diagnosed last April and have not seen him since then and I gather that's quite a common experience. I do sometimes request to see him for out-patients when I think there's a particularly important issue and I've been told that's an ok expectation - the problem has been that the other consultant has seen me when I've asked and now I've seen her several times and that relationship has helped with continuity and developing insights into treatment options - continuity seems to be difficult to get and if I'm actually getting that from one consultant I'm sticking with that at the moment.

On second opinions - we can request one but don't have a legal right to one although they are rarely refused; if you have concerns I'd ask for one but first try to probe with your own Onc and research on the web yourself/using these forums.

Good luck with the bisphos. - it seems to work really well for many people; the alternative seems to be IV treatment like Zometa that can be better absorbed by the body but is usually only given for a short while and then bisphos is prescribed. Hoping your bisphos is holding tumours you might want to ask your Onc about Zometa if the scan is not too positive.

Best wishes - and good luck with scan results too
Fran

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hi everyone, i have recently posted on here but went through mediator as i had'nt registered my user name properly (mush for brains) anyway to re-cap; my name is sue i'm 52 was dx in jan with invasive lobular bc then 2 weeks later with sec bone. im on fec to shrink and bisphos. got a scan on thurs so bricking it at the mo.
i've got a couple of questions if any of you can help me out, firstly i have'nt seen the onc. im under since my dx been for two more apps and seen a different doctor each time is this usual? i just feel it would be better to see same one all the time. secondly, i hear you all talk about the Marsden, i know that is specialist hospital, is it beneficial to ask to be referred there do you think and can you do this or would you only do that if your not happy with your own hospital. i feel i want to ask my onc if the treatment im getting is as aggressive as it can be .. Otherwise im feeling well and since finding this forum have been feeling much more optimistic, i was struggling to find support network for secondaries so its great to know you are all out there, i think i saw that one of you lives in suffolk i live there too. sue xx

finty
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Alex - good luck, I hope you get the go ahead to treat your liver met. Seems like a no-brainer to me, and really worth fighting for.

finty x

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Hi everyone,

Finty, Yes I am pushing for ablation on my liver. I looked at my MRI scan which showed a small met (1cm) on the edge of my liver. The onc said it was stable as no different from 2008, so I asked for a referral to a liver specialist for ablation. He was not that keen but agreed when I pointed out that if it does progress it will do so a lot quicker in an organ than in my bones.

I also checked out the bone scan I have a hot spots in my neck, half way down my spine and a bit in my pelvis.

Mackers, I am on the same meds as you herceptin tamaxifen and bone juice. I was diagnosed at 42 I am now 45. I hope the meds work well for you. I was interested in what you said about the first two years being quite critical re progression for stage four. Is your onc suggesting that if it remains stable/reduces that the prognosis is generally better?

My OH is just plumbing in my new laptop. Hopefully it will be much speedier than the one that I am currenly using which is about 7 years old.

Alex

finty
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Hi Fran

I have replied to your PM - although I misunderstood your weight question and though it referred to chemo. It's a very good question about the bone drugs, hormone therapy too - as another one with big bones I will be asking my onc about it too.

finty x

dawnhc
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Why am I not surprised when you say zometa is rationed in some areas!!!

Frances I have been on bisphos. now for 9 years. I started out on pamidronate because zometa wasn't around then. I had a short spell on bondranat but couldn't get on with it so went back on pamidronate then switched to zometa last year as they onc thought it was 'stronger'. I have always had iv bisphos every 3 weeks. I think that pamidronate is quite a bit cheaper than zometa - but at the Marsden they seem to give zometa to most patients. These drugs are definitely based on weight.

I have also had quite a bit of palliative rads to various bits. You have probably said somewhere but I can't remember where your bone mets are. Do you have it both in the lower spine & hip? I found quite a problem with some of the rads I have had because I have disease in both those areas and sometimes it is hard to tell which area is causing the pain. Is the hip pain coming from the hip or is it referred pain from the lower spine?

Sarah good luck with your scan this evening. I thought when you said unearthly hour it was a.m!

Dawn
xx

Mackers
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Hi

Best of luck with your scan at least it wont be busy but it's the waiting about till it gets to the appointment time Xx

Frances...hi I've been thinking about your dosage question... In children they do give different dosages depending on age based on weight, but adult medication is always the same dosage, maybe maufacturers hv averaged a weight.. I suppose it depends on different drugs. Our bone drug dosage is to maintain a level of the drug in the body all the time.. Bottom line is I don't know, but interesting thought... I wld ask onc next time u see him... Zometa in some parts of the country the nhs fund ongoingly, I live in berks, they don't, but I had it when I was having chemotherapy. I think it depends where u live...

Sorry if not much help
Txxxx

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Good luck with scans - at least the waiting time won't be so long if they are doing out of hours scans - I had MRI at 7pm that felt very weird but it did run to time as well.

Wondering about bone mets treatments and if you have any thoughts on two issues:
Bondronat is holding some of my bone mets but hip pain is getting worse on some days - Onc has said she can treat this palliatively with radiotherapy when pain gets too bad but I'm wondering about asking for Zometa again as I've had 6 doses last summer and wonder if it would work better than Bondronat. Has anyone had two lots of Zometa ? I'm asking as I've heard that it's rationed....

Also wondering about dose of tablets - I think there is only the 50mg dose of Bondronat available and I'm on that but since I'm 5ft9 and 14 stone and know I have very heavy bones that run in my family I'm wondering if there's any way of upping the dosage since presumably a higher dose might be appropriate for me - how can all sizes and shapes need the same dose? Would welcome your thoughts before I raise these queries with my Onc.

Thanks
Fran

belinda
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Good Luck with the results Sarah..yes I had an out of hours scan once..eerily quiet.
x

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Hope everyone had a good weekend. Sun is still shining here in Coventry. Have a ct scan today at the unearthly time of 6.20 pm! Don't know about you guys but I hate out of hours appts.
x sarah

belinda
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Lovely to read good news here. 🙂 ..xx

Mackers
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Hi

Tnx finty I am SO relieved I'm not going to worry now until next cat scan which he said I would have in sept/oct, so booking my holiday!!!

I think his reasoning is he sees lots of ladies as does my breast surgeon and they both agree that they just can not tell what the cancer is going to do with anybody, they treat as aggressively as pstients bodies will cope with... but with stage 4, as my husband said he's playing poker, which I know is awful, but it's true.... Doc said the firsttwo years are important and usually with women like me when re- reoccurences will happen it's within two years..if they do??? and he will be monitoring me very closely. Also with the stage 4 it's not particularly spread from contained limited mets as he said mine could poss contain no cancer now,buts circulating cells from the original spread and cells that may not shown themselves on a scan, which is why i think he wants to wait till sept oct for review of situation. He even mentioned operating, And some kind of radiation, but he wants to see what he's really dealing with first.....

Meanwhile I'm still having herceptin, tomixifen and (no cup of tea for me) bone drug!!! And as footnote radiation!!

I really like my doc and he was genuinely pleased everything is going in the right direction.

Lovely day today I may even buy myself a new dress and have an ice cream!!

Love txxxxx

finty
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Mackers - there's never any need to apologise for moaning - it's what this place is for. Really pleased your onc thinks your mets are healing and is going to give them a blast - I had my spine blasted at the same time as the breast rads, but I hadn't had a mx and maybe that's the difference. There isn't any hurry though - the Herceptin and bone juice is clearly working. Why do you think he is waiting for it to show up elsewhere - is he planning some more scans?

Alex - great news that your bone mets are improved, and glad you've been able to get a referral for your liver - are you pushing for ablation?

finty x

Mackers
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Hi

Just thought I'd update you on my bone scan results. As I know I've been moaning alot about things to u all lately abt my bones...

No change from first one 10 months ago. Doc thinks as I responded so well to chemo that the hot spots are probably healing. I asked about some kind of radiation on them. He said hd would be very willing to deal with the two spots, but wants me to wait till I finish current treatment, ie just had mx and still hving radiation on chest etc. The real truth is he wants to know if it is anywhere else and just not showing up yet. As I'm 43 and Her+ and its very early days for me I understand where he is coming from. So just keeping going and fingers crossed!!

Love to you all and thnx again.

Txxxxx

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hi everyone

I mostly read this thread and was a bit lost when it seemed go quiet recently. I am glad people are posting again.

NickNack sorry to hear about your mum. I was diagnosed with bone and liver mets in 2008, I still work full time. Its not everyone's choice however more people are choosing to do so. MacMillan have a publication called working through breast cancer and Unison have recently issued guidance for employers re staff who are working with cancer.

Debonnaire good news that the meds are working well.

I had my bone scan results which showed that bone mets are a lot better than in 2008. Onc said the pain in my neck was probably muscular. He has reluctantly agreed to refer me to a specialist re liver met.

Alex

dawnhc
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Denobair so pleased to read your good news as well 🙂

Dawn
xx

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Hi Estha

Thanks so much for this advise, I woll deffinately look into this and get things moving for her, I think it will take a bit of weight off her mind if she can put things in place.

I appreciate you taking the time to responde.

Take care xxxxxxxxx

Esha_Ness
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Hi Nick Nack
Just picked up on one thing you said aboutyour Mum and work. Some people choose to carry on work as it provides money!! social stuff,normality, identity and distraction... and it can be a way of coping for some.
Others choose to stop work.I chose to finish work and was advised not to resign but take all of the sick leave entitlements. I then went on to ESA. Your Mum is entitled to DLA if she has secondary breast cancer, this does not effect any other income in that it is extra. It is a very generous sum of money and will really help with all of the added expenses.
Your mum needs to make an appointment with the breast care nurse at the Oncology centre and the nurse will fill in the forms or you can go to Mcmillan CAB who will assist with form filling and give other advice about too about entitlements. I have only just claimed DLA 16 months after my secondary diagnosis and the nurse CAB were clear we are all entitled to it.Best of luck.
Esha

Esha_Ness
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Hi Debonair
What good news. Pleased that you have had a good response to Arimadex. May it work for a long long time.
Esha

finty
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Fab news Debonaire x

belinda
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Hooray Debs, oh what super news...those tiny pills can be very effective.
:-) Belinda..xx