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Bone mets - please join in

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Re: Bone mets - please join in

Hi Janette 

Yes it will be 10 years on the 17 August this year hard to believe.. Time flies by when you are having so to speak.

Over the last 10 years I have had various treatments . Just on tamoxifen at the moment. 

Hope your headaches have improved . 

Take care

Linda

 

 

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Re: Bone mets - please join in

Hi Catokitty, welcome to the forum, like Linda I can’t give you any info regarding your procedure/treatment but just wanted to welcome you.

 I’ve been a member here for 5 years now, primary 2007 then bone mets 2014 and am currently “Stable Mabel” 

Hi Linda, I didn’t realise you were dx so long ago, 10 years that’s brilliant!!

hugs Janette xx

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Re: Bone mets - please join in

Hi catokitty

Welcome to the forum you have come to the right place for support . Unfortunately I can not offer any advice on the procedure you are going to have just thought I would offer my support. 

I have been a member of this forum for about 10 years. I was diagnosed with breast cancer and bone mets at same time. 

 

Linda 

 

 

 

 

 

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Re: Bone mets - please join in

Hi to everyone.  I hope you will welcome a new member to this thread.  Four years on from hormone positive left breast cancer I have been diagnosed with a single spinal met which has caused a fracture at L2 and spinal cord compression.  GP said it was typical sciatica pain and I have been on pain meds and having physiotherapy and was told it was resolving and I was on the mend.     My breast team got me an urgent MRI even though they thought it was sciatica too and I ended up being sent straight to A&E following the scan and being admitted on Thursday.  I am home now on steroids and going to a neurosurgery appointment tomorrow to discuss surgical options.  Otherwise it could be radiotherapy/chemo/who knows.   I am 64 and have a lovely family to support me.  I am in Surrey and am under Kingston Hospital, St George's for possible surgery and it will be the Marsden in Sutton for radiotherapy if that comes about.  This is a wonderful thread.   I wonder if anyone has experience of surgery for decompression or en bloc resection.  I am very daunted by it.  All the best to you xx

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Re: Bone mets - please join in

Hi Bon

 

only just seen your post and wanted to wish you well as along with others you have been,  and still are, kind and supportive to me and others especially when first diagnosed. Have fun and enjoy everything . Long may that last. 

Wendy x

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I’m new to this, but can respond to symptoms of sternum lesion. For about 6 months to a year I thought I was having cardiac issues, went to see a cardiologist and was found to be clear of cardiac issues. The symptoms I was having was deep chest tightness (unwell feeling in my chest) perhaps some mild discomfort with deep breathis, but uncertain how much was from the lung lesions vs sternum lesion. I believe since my lung lesions are so small, much of the discomfort was coming from the sternum lesion. Hope that helps.

Community Champion

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I  haven't posted for ages but I  do still pop in and keep an eye on everyone.

I'm sorry to see your latest results  Bon. You say that the meningioma is not bc, have you seen a different oncologist about it? There may be options including surgery or rads. I'm sorry if you've already covered this with your team but just wanted to make sure you've been given all the info you need.

Here are a couple of links if you want to look, but obviously you know better than me what you want you want to follow up or check out

 

https://meningiomauk.org/meningioma-facts/

 

https://www.macmillan.org.uk/information-and-support/brain-tumours/understanding-cancer/types-of-bra...

 

With every good wish to you 

Julie x

 

 

 

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Re: Bone mets - please join in

Thank you all of you for your kind thoughts and wishes

Bon x

 

Member

Re: Bone mets - please join in

Hi Bon

So sorry to hear your news. Wishing you a long pain free time to enjoy with friends and family. 

Please take good care of yourself and keep in touch. 

Much love Paula xx

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Community Champion

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Bon, I'm saddened to read your results from your scans. Hoping you have some wonderful days with family and friends. Big hugs! FF

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Bon, I’m very sorry to read this, I hope you are comfortable and wish you well. Kate x

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Bon, I'm so sorry to read your news, hope you can spend time making memories with no horrid treatments. Take care and keep in touch ((((hugs))))
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I am sorry to hear this and wish you well x

Member

Re: Bone mets - please join in

Oh Bon, I am so sad to hear this, and it’s irrelevant how old you are, whether you 20 or 72 it is still so unfair!!

Sending you all my love, take care lovely lady.

hugs Janette xx

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Re: Bone mets - please join in

Just wanted to wish you a peaceful time with family and friends 

kindest thoughts 

xx

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Re: Bone mets - please join in

Dear Bon, 

Am sorry to hear your news too. 

How long have you had SBC for? 

I hope you aren't in too much pain from the mets and are able to spend some quality time with friends and family. 

Hugs x

 

Member

Re: Bone mets - please join in

Dear Bon 

So very sad to read your news. You have been (still are) such an inspiring contributor on this site.  I do hope that they can make you comfortable and give you some quality time.

Many hugs

MaggieB

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Re: Bone mets - please join in

Had a head, thorax and abdomen scan last Sunday. It shows a meningioma (not BC) pressing on my optic nerve, another area of cancer in my brain, and lung mets in addition to the bone and liver mets I already had, So no more treatment for me. But I'm 72 so have done quite well

Hugs to all

Bon xx

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Channel, I only work PT. I'm too tired for more. I don't seem to have any SE to exemestane. The evermolimus hiked up my blood glucose. Had to add more meds for that. 

Isn't it wonderful to get good results from our scans! Long may it last. FF

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Hi FF, had my onc apt today, recent CT shows all is stable no change, so was glad to hear that. Do you get any side effects from exemestane? I get joint pains quite abit, onc said take painkillers, I have liquid morphine at home for serious bone pain when I was on chemo but dont like to rely on it. Inspiring to hear you are 13.5 years down the line since diagnosis, sorry to hear you broke your back must have been so painful.  Our bones are so delicate now. Good luck with your scans in July. Do you work? I've just returned back since beg of May, just a few hours a day phased in period. It's enough atm as I get bone pain still and fatigue. Apparently takes a while to recover from chemo as I only finished end of March. 

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Hi Riversidedawn, sorry to hear you’ve had such a rough time of it, fingers crossed that your new treatment will kick the backside of the little uggers now!

hugs Janette xx

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Re: Bone mets - please join in

Hi Riverside Dawn

What a lot you've had to cope with and docs ignoring your symptoms as well. Hope eribulin works for you and you can get back on your horse soon

Hugs Bon xx

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Thanks FF

It's nice to come back and see some familiar names still going strong on here.

So far the Eribulin seems ok, just a red steroid face and very tired because I did too much over the weekend. 

X

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Riversidedawn, Wow what a troublesome update. You have been through the mill! I haven't had eribulin, so can't give you any pointers! Hoping it kicks the bsck out of those cancer cells. Hugs! FF

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Hi, I haven't been on for a while. So sad to hear about Moijan and Carolyn.

I was diagnosed with bone mets in Dec17 and bobbed along ok on letrozole and palbociclib, some activity in one lesion so had cyberknife in November18. In January I started to suffer terrible ongoing tummy pain, vomiting and constipation. I saw 6 doctors including home visit, several GPs, oncologist and overnight in A&E and all said it was nothing to worry about.

After 4 weeks I had my quarterly MRI scan which revealed 7 tumours in my abdomen with some of them obstructing my small bowel. In mid Feb I had emergency ileostomy (removed 40cm of small intestine with attached tumours and have a stoma and external pouch), 2 weeks in hospital, lost 2.5 stone and started on paclitaxel mid March.

I've just had CT results following 2 cycles of taxol, unfortunately it hasn't worked and the remaining tumours have grown and spread to my liver.

I started Eribulin on Friday and will be scanned again after 2 cycles, approx 5 weeks.

There's not much online about Eribulin, I found the thread that Moijan started and have joined in with that.

It's reassuring to read Nicky08's uplifting post after 11 years with this damned disease. 

Today I went back to pilates for the first time since January and that was a great feeling to be normal again. Hoping to build up my exercise over the next month and get back to horse riding as soon as possible.

I'm 2 months into applying for ill health retirement from work, I've been successful with PIP, ESA and have my parking blue badge. 

Hope everyone is coping with all that you are dealing with at the moment. X

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Lovemama, Sounds like time for a new Onc!! Too wishy/ washy! FF

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Hi Pea, thanks for your reply.

I am planning an early retirement at 55. When my first diagnosis in 2011, I went back to work 2 weeks after my last dose of Herceptin. I work in the IT dept in a bank and supporting banking systems overseas.  UK is one of it. Busy life made me forget about the disease and started eating junk foods bacon, fries etc soon after 8-(.

I had my first Zometa last Tuesday. Being sick for 1 week. Finger crossed.  side effect from Zometa vanished just 1 day before my onco appointment. Still not much input from my onco.

Me : last time you mentioned about I had skin cancer.....

Onco: No you did not have skin cancer. Sorry. (I stopped talking on this topic. Maybe he found out from the mammogram which was done 2 weeks ago. I had mastectony to the right side. In previous years, mammogram was only done to my good breast but this time the radiation lady told me my onco has requested to do it as well to my right side which has no breast tissue but only folded skin and bone. However, On the skin there are 3 marks from itchy scratches)

Me :  ok. My prev onco mentioned she had no concern to my liver lesion...

onco : do you think it is cancer if shrink with chemo. I think so.

Me : Can I have an ablation for my liver lesion ?

Onco : no usually ablation is offered when there is only one in liver

Me: I read from the BC cancer agency website, max 3 ?

Onco : no. you have so many diseases. Somebody has it but usually for colon cancer spread to liver

me: what is the size of the liver lesion?

Onco: Your CT scan result has not been printed. 

Onco: your tumor marker is low

Me : I had Zometic last week but I do not have the Letrozole prescription

Onco: sorry. I will arrange for it.

OMG. Can I trust him ?????

By the way, finger crossed, all the best result from your RT  xxx MelMel

 

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Re: Bone mets - please join in

Channie, I have had my mets since Nov of 2005, 13 1/2 years. They are in my lungs and lymph nodes in chest. Bone scan says they are in my spine, MRI says no. Haven't ever had a PET. I did break my back, but MRI says it's osteoporosis. Dexa scan says I don't have osteoporosis. Yet, I have lost 2 inches in height. I think taking two drugs is a stronger defense. Never, really asked why. Have a good weekend. FF

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Hi FF, thank you for your reply. I have been on a few treatments (and so have you!) as my bones were worsening so had to change. But scans in Feb showed the bones were "healing" so hoping this CT will be just as good. Though I still suffer from bony pain after a while of any walking/sitting/standing. I've not heard about combo treatments but I will ask onc next week. Are they better? Also good to hear you said over a long period of time... how long have you had SBC for?  The prognosis averages are scary, but its reality... speak soon, Channie xx

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Great news Janette bet you are so relieved. Just a thought could the Letrozole be causing your terrible headaches? Hope it gets sorted soon . 

Linda 

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Re: Bone mets - please join in

Welcome Channie! You have been through quite a few treatments. Fingers crossed that exemestane works longer for you. I'm on exemestane and everolimus combo. I have been on it 2 years. It might be failing. Going to scan in July and see what is going on. I have had lupron, abraxane/avastin, vinorelbine (navelbine), capecitebine, gemcitibine, palbociclib/letrozole and now E & E. It has been over a long period of time. Maybe you could ask about a combo treatment. I noticed you haven't had any combos. Best wishes! FF

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Re: Bone mets - please join in

Hi, I'm trying to join in and post and couldn't find the button. New to forum but diagnosed with SBC in 2016 Bone Mets only. 

Primary in 2013, underwent lumpectomy, chemo and radio then was all clear for 2.5 years. Have been on treatment since 2016. Letrozole, zoladex, zometa, capcitibine, navelbine, recently taxol chemo, now on exemestane hormone tablet. Still recovering from the chemo which was really tough. Had CT this week to check progress, see onc next week. Just wondering if anyone else has been through all this and still sane! 

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Great news Rosie but terrible headaches no fun at all. Hope the docs can sort something out for you.

Hugs Bon xx

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Hope all goes well tomorrow with the new treatment Avrelia,

will compare later in the week

POSITIVE THOUGHTS

XXXXXX

janet

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Re: Bone mets - please join in

Great news Jeanette! You have my sympathy if you’re getting headaches, I had them regularly until I’d gone through the menopause, hope they settle down soon, Kate x

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Hi ladies, just got the results from my head MRI, and all is normal!! 

So relieved, just need to tackle the reason why I keep having these terrible headaches now.

Bon, good luck with yours 🤞🏻

Hugs Janette xx

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Glad you’re getting good support Bon but sorry to read about the problems with your eye and ribs. Will be thinking about you and hoping all’s well. Take care, Kate x

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Am going for a scan of head, thorax and abdomen on Sunday at 10.00am. Pain below my ribs started yesterday. Need to know what's going on.

I don't know how I'd be coping if I didn't now have a breast care nurse and a palliative care nurse who works for a local charity. When I started on this journey things were pretty bleak and lonely.

Hugs to all

Bon xx

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Re: Bone mets - please join in

Hi to you, Nicky, I read your last post on here with interest because, after 3 years on my trial, my last CT scan also showed a shadow on my liver. Had a mini break in Amsterdam which delayed a further MRI by a week but showed a single small lesion. My lovely trial team have kept me on the trial for now but we go in this Friday to see if they can do RFA on it or whether I will come off the trial and onto chemo, possibly Eribulin as well! 

I will be sad to leave the drug development unit at the Marsden after 3 years, the doctors and nurses could not be more efficient, positive and caring.

I might pick your brains about RFA as I think you've had it? but I'll wait to see what's next first. Enjoy your mini break and thank you for all your helpful posts.

pea
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Re: Bone mets - please join in

Hi Lovemama,

Sorry it's taken me a while to reply to your message - I had an oncologist appointment last week and wanted to see what he said. They have put me on palbociclib and I started that today so fingers crossed I don't get too low white blood cell count and fatigue (they are the main side effects). I am managing ok on the anastrazole - the only side effects I get are achy joints in the night when I stiffen up. The denosumab is going well and as yet no side effects. They are going to book me in for a PET CT scan next month as it's too soon after my RT to have one. It'll be interesting to see if the RT had any effect on the lesion in my sternum. I hope you are getting on ok with Letrozole and you get the scan report via your GP. It's so easy to forget to ask things when you are in with the oncologists and my oncologist now knows I always bring my note book with my list of questions and we laugh about it at the end of every consultation. I say "It's time to get my list of questions out!". I work through them and tick them off!!! 

I'm thinking of you and hope you get some clearer information soon. I turn 48 in July and I am already planning a big celebration for my 50th in a couple of years.... have to have something to look forward to and aim for! 

Take care xxxx

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Good luck with you change in treatment Nicky

Your posts mean a lot to us all

Bon

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All the best, Nicky, with any changes to your treatment. You are always so well informed and I like the fact that you want to understand what’s happening!  Then you come here and share it all which gives us insight into this difficult disease. Just when we think things are steady it can all change! Don’t I know it! But your steady calm is very impressive. We will all look forward to your developments. It does sound as though eribulin should be a good way forward for you after the good reaction you had in the past. They will just have to monitor your WBC’s and help as needed. An occupational hazard! And I agree with you at how onc’s so often seem to expect us to make choices! 

 

So so far I am pretty ok on cape..........ridiculously peeling fingertips, bloody nose, but really quite ok. Scan in June. What a life!

 

All the best, Nicky. Keep us informed. Hope everyone else is coping and enjoying the lovely warm days.......at last!

 

mo

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Hi Nicky,

havent been on for a while, needed a little break. So sorry to hear Faslodex stopped working, did you get over 12 months on it? It’s such an easy treatment that I dread coming off it. Got scan coming up so we will see, Ive had 8 so far.

Hope your new treatment treats you kindly. 

Love Debs x

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Hi Nicky

Thank you for your reply.  I think you are at one of the best hospitals. On all the treatments I have been on I was just told this is your one. Nice that you are involved . I am keeping OK thank you for asking. I am still just on tamoxifen at the moment . Not had a scan now for 3 months. Back at oncologist 3 June so I hope they will arrange one then. Sup pose if you go back on a treatment you have already had you know what the side effects are going to be. 

Enjoy holiday . 

Linda 

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Hi Linda

Morning to you as well - although I think its just gone past 12!

I've had a small lesion (in the liver) which showed up as a shadow on a CT scan and a subsequent MRI then confirmed as a lesion.  There are also a few more dots that show up on the MRI but not the CT. I've been considering my options - don't you love it when the oncologists leave it up to you to decide!  I think I am most likely to go back onto Eribulin as I only had 8 cycles and it was still working when I stopped it.  The reason for the 8 only cycles was an oncologist at The Marsden, where I had gone for a 2nd opinion and to start a trial at the time, felt my bloods weren't up to being hammered by chemo for any longer than 8 cycles and that my bone marrow might be compromised.  This has proved not the case as my bloods have been fine and were for the duration I was on Eribulin other than wbc being low each cycle and I needed the GCSF injections to boost it.  I had expected that Fulvestrant wouldn't keep the little critters from making an unwelcome reappearance so I'm resigned to the fact I'm back on chemo soon, after OH and I have a quick holiday to Southern Spain!  However I did have 18 months of not having chemo which was a welcome change.  Until I see the oncologist in a week or so I won't actually know which chemo I'll be having and in the past everything has changed quite often for me especially when I've 'announced' what treatment I'll be having so watch this space!

Hope you are keeping well.

Nicky xx

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Morning Natalie 

Just want to wish you good luck with your MRI of your head. Got fingers crossed it turns out not to be serious. 

Linda 

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Morning Nicky

Sorry to read you are having to change treatment  as it suited you with few side effects? If you don't mind me asking have they told you what treatment you are changing to. Hopefully whatever you are put on has few effects and you are still able to some travelling. 

Take care

Linda

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Hi I am having a Breast MRI soon to determine if I have a similar issue with my sternum could you share with me any symptoms you have had with your sternum?

 

I too had BC in 2013 with lumpectomy, radiation and tamoxifen as treatment.  I didnt stay on the tamoxifen very long as it caused other terrible side effects for me.

 

Would love to hear about your symptoms and how you are doing.

 

Good luck and take care.

 

Amy

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Bon, Getting away and having some fun is what we all need. I would have chose seeing my son and grandson, too. I do hope they can get you in this week though and get you checked out. The sooner the better! Big hugs! FF

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Bon...........just to say thinking of you next week. Your double vision would be more worrying on its own I think. If the swollen eye is something local.........an infection perhaps.........that would interfere with vision. So I have my fingers crossed for you, but a head scan is an obvious precaution in our situation. Let us know how you get on. 

 

mo