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Bone mets - please join in

katzygirl
Member

Re: Bone mets - please join in

Hi Clarence I am so sorry to hear you are and have been having such a difficult time.  I discovered The Thrive Programme by Rob Kelly a few years ago and with the help of many sessions with a Thrive Consultant via Skype I made great progress with dealing with a life long phobia (I’m now 58).  I had tried so many treatments over the years that didn’t help at all, some actually made me worse! The Thrive Programme

is a fabulous book that can be bought from Amazon for around £25 and well worth a look. It takes some work and you really need to apply yourself and stick at it and can also get help with regular seasons with a Consultant. I paid £650 to mine and that was for as many sessions as I needed for as long as I needed until I was where I needed to be, well worth the money. They also have a website with testimonials from people who have transformed their lives. I hope this helps. XX 

katzygirl
Member

Re: Bone mets - please join in

Hi Pea, I saw an oncologist yesterday, not the one I was expecting to see, he is off sick and they don’t know how long for.  Unsure if I will be under his care when he gets back or if I will stay with the lady Consultant I saw. So they got my CT scan on the screen and tried to show how the lesions show up

on the scan. They are in my spine as well as my pelvis and they are concerned about an area at the top of my spine in my neck. I have now been booked for full body MRI, a bone scan and an ultrasound, results will go to spinal surgeons to see if they need to do anything to strengthen my spine before treatment starts. Treatment plan is Verzenios  Abemaciclib chemo tablets and Denosumab bone strengthening injections , I also seem to have a leaflet for Fulvestrant (Faslodex) can anyone tell

me anything about these treatments. Still feeling fairly positive mostly due to you wonderful people on here, not sure how many lesions on my pelvis and spine but the good news is it looks like my organs are clear. There are what looks like 3 small cysts in my kidney but onc said most people have these and they are harmless but I think that is what tomorrow’s ultra sound is going to double check. Worries now are that full body MRI could show more mets in other areas and what damage they will find in my spine. Still feeling very well and no pain at all which they seem surprised about. Steph xx

katzygirl
Member

Re: Bone mets - please join in

That’s amazing, so admire your decision about keeping it to yourself and so good to know that you feel well, look well and are 4 years in. I am guessing from this that you haven’t had chemo? Hard to believe they can’t find your primary but know it is breast cancer, I have so much to learn.  I have been at work this week and finding it really easy as all my colleagues were updated at my request and it’s like nothing has happened, until I got the call this afternoon. MDT was yesterday, I have an appointment at 9am tomorrow, I have been squeezed in to a very busy clinic as the main onc (my first choice) is off sick. So anxiety set in but I’m slowly getting it under control. I will let you all know the outcome, praying it is something without too many side effects but you lovely people have made it all so much better, thank you so much. xxx

Kate21
Member

Re: Bone mets - please join in

Hi Katzygirl, it’s now almost 4 years since I got my diagnosis, straight to stage 4, my primary is breast but hasn’t been found and my secondaries are in my upper spine. My treatment is similar to Anne30 but as I was already on treatment when Palcibiblib was licensed I don’t qualify for that. I agree with what Anne has said, I feel very well, it hasn’t stopped me from doing what I want to do and I still haven’t told my family (I’m not married) about my diagnosis, only a few very close friends know. I decided I didn’t want to be reminded all the time about it and wanted to make my own decisions about how I was going to approach things. Reason I’m saying this is nobody has ever questioned me about my health, infact I get told how well I look, so try not to worry about looking unwell once treatment starts, stay as positive as you can, and do things you enjoy as and when you can, Kate x

Anne30
Member

Re: Bone mets - please join in

Hello. I am now just over a year into treatment for bone mets. I have Zometa once a month letrosole every day and palcibiblib one week on and one week off. I work full time and feel fine. I agree it’s hard to believe I’m so ill. If at all possible I think it’s best to get on with things as well as you can and enjoy them as much as you can x

katzygirl
Member

Re: Bone mets - please join in

Thank you so much for all the info,it’s just what I needed! Dreading being recommended chemo as it terrifies me. I have had a sickness phobia all my life, I have improved it a lot recently by going through a specific programme and working at the hospital but it still scares me.  I am so tough with everything else and have a very high pain threshold which is why I would always opt for surgery normally. So good to know that treatment also doesn’t take over your life and that you can have long periods of feeling well. I have no pain or any sign I am not well, I have a healthy appetite and no tiredness so hard to believe I have incurable cancer. I just suspect that once I start treatment whatever it is and have got to go through a period of feeling and looking unwell and think that will really bring me down and make me think that things aren’t going well if that makes sense. Anyway I am rambling on! Hopefully in the next few days I will find out the extent of the mets abd what treatment they recommend. Thank you again for taking the time to help me feel more positive about life from now on. Steph xx

nicky08
Community Champion

Re: Bone mets - please join in

Hi katzygirl

I had exactly the same situation when my bone mets were diagnosed 11 years ago. My breast cancer had come back as a local recurrence and I was due to have a mastectomy when a CT scan showed spots in my bones, just the 2 on my spine.

Basically it was decided that a mastectomy was out of the question as the main aim is to treat the bone mets and stabilise them. Any treatment you have, be it hormonal or chemo will be based on your biopsy and would usually be the same as your original primary. Any treatment like that is called systemic ie it treats the whole body including any breast cancer cells in your breast. There is an ongoing debate as to whether the new primary, or recurrence, should be removed by surgery and that seems to be down to the individual oncology team. However usually this would happen after a period of stability in the bones has been noted and to show you are responding to treatment. Surgery involves issues such as immunity so chemotherapy couldn’t be used if surgery had just taken place. Usually for bone mets you would be given a bone strengthening treatment alongside whatever other treatment you are suitable for, possibly chemo or maybe hormonal (based on you having hormone positive BC from your post).  Treatment will be ongoing, there is no cure for secondary BC but it is treatable and since my diagnosis 11 years ago more treatments have become available. Although I have had quite a few different treatments now I have also had long periods of stability where the treatment has been very unintrusive and I have been able to continue getting on with living life! Btw regarding surgery I didn’t have the mastectomy and when I asked my oncologist a year or so down the line he said there was nothing there to remove, the recurrence had gone and it has never shown up on any scans since.

Nicky x

katzygirl
Member

Re: Bone mets - please join in

That’s really helpful, thank you so much xx

pea
Member

Re: Bone mets - please join in

Hi Stephie,

Sorry to hear you have been diagnosed with secondary bone mets. It is a scary time but I have found our Breast Cancer Group meeting every month such a great support and a great source of information. The other ladies are all fab and we all support each other.

If you go to the breast cancer care website and click on "in your area" it lists all the places there are meetings and you can register from there. Here is the link:https://www.breastcancercare.org.uk/in-your-area

Quickly looking through I saw there was one in Romford - I don't know if that's any use to you. Have a scroll through the list and hopefully there will be one near you. Breast cancer care are also really helpful if you phone them on the number on their website. 

Hopefully you will see the oncologist soon and get some answers and a treatment plan. Take care, Phoebe xx

 

funnyface
Community Champion

Re: Bone mets - please join in

Katzygirl, Treatments can vary. Some ladies do well with hormonal, others do better with chemo. Nobody's cancer responds the same way. Also, you might take a drug and feel fine on it might make someone else as sick as a dog. I started with a hormonal and my cancer grew. My oncologist said hormonal would never work for me. I went for a second opinion and that oncologist said the hormonal he gave me shut down my ovaries and not my adrenal gland. He said my oncologist didn't do anything wrong, but he would have added another drug. Also said he still thought hormonals cup l d work for me, but agreed it was time to blast it with chemo. He said if my onc wouldn't try hormonals come see him he would. I did 9 1/2 years of different chemistry and pablociclib came in the market. I told my onc I wanted to try it. He said no at first and I persisted. I won! It worked for 2 years and shrunk everything and cleared out thus stuff called ground glass opacity. They did decide it quit working, but I've been doing wonderful since I did. I still breathe better than I did for many years. I can walk further and for a longer time. You never know which drug might be the one to help you. By the way, I live in the USA. I'm about an hour west of Philadelphia. You will find me posting at star n he times bc of the time difference. FF

katzygirl
Member

Re: Bone mets - please join in

Hi Anne 

I was very interred to read your post as I have just been diagnosed with bone mets a few weeks after being told I have BC for the second time.  The first time was 6 years ago when I had a WLE, radiotherapy, 4.5 years of tamoxifen and currently on Letrozole. I was for to go in for single mastectomy with immediate reconstruction this week but during the tummy scan needed to locate blood vessels bone mets were found in my pelvis and the op has been cancelled. I am now awaiting further scan results and appt with oncologist to find out my new treatment plan.  What worries me is what will be done now to cure the breast cancer.  I can see you were diagnosed with both at the same time, are your treatments tablet based and are they fighting the breast cancer as well as the bone mets. So good to hear you are feeling well xx

katzygirl
Member

Re: Bone mets - please join in

Wow that is so good to hear and very happy for you and your family. 

I have had great care from Colchester Hospital and have actually worked there for the last 4 years but after reading lots of posts on here I really feel they should have given me some helpful info with regards to the possibility of a positive outcome. I realise that giving that sort of news has to be done with a sad face and grave voice but they wouldn’t give me any info. I asked the surgeon how long I could live and after a long pause and looking at me with great sadness he said “I don’t know” very frightening.

Anyway I hope when I see the medical oncologist he will have good news and be more upbeat about the possibilities, in the meantime I will keep reading all the helpful advice on this thread and hopefully work our how to glean other useful info from the site.

 

Thank you again

katzygirl
Member

Re: Bone mets - please join in

Hi Pea

I was diagnosed with BC for the second time 6 weeks ago and was due to have mastectomy and reconstruction Tuesday if this week but CT scan in prep for this showed secondary bone mets in my pelvis. I have now had further CT of chest, abdomen and pelvis and awaiting appt. with oncologist. I was introduced to the secondary breast cancer nurse who was unable to tell me anything useful apart from the fact that she had patients that she had been seeing for years. The whole appt was very doom and gloom so thank god for this forum.  

 

I was really interested to see you have a group that meet and give advice, I am in Colchester in Essex are you aware if there is anything like that in my area please as not sure how to search on here being a newly.

Stephie

funnyface
Community Champion

Re: Bone mets - please join in

Katzygirl, I have lung mets. When Nov rolls around it will be 15 years with lung mets. I can't promise you 15 years but, crossing my fingers that it gives you some hope! FF

katzygirl
Member

Re: Bone mets - please join in

You have just made my day! Diagnosed with bc for the second time 6 weeks ago and booked in for mastectomy with DIEP reconstruction next Tuesday 25th June, part of the prep was a CT scan of my tummy to see where blood vessels are as that was the tissue that would be used in the DIEP reconstruction, then got the bad news that this had shown up bone mets and surgery cancelled. Now had further CT and waiting for MDT and appointments with oncologist. Saw it as a bit of a death sentence to be honest so to read this a huge relief and has given me hope. I will now read on and be contributing as  I go on this new journey. 

nicky08
Community Champion

Re: Bone mets - please join in

Sending you hugs, bon. I hope you are doing well, in the circumstances, and doing things that bring you joy.  I hope this lousy weather will improve soon so that you, and all of us, can enjoy some summer sun.

Take care

Nicky xx

bonariensis
Member

Re: Bone mets - please join in

Hi Clarence 

I agree with Rosie that you should seek some counselling if it is available. It helped me when i was first diagnosed and talking can only do good.

Rosie, sorry to hear that you headaches are not improving but glad your brain scan was OK.

Thinking about you both

love bon

avrelia
Member

Re: Bone mets - please join in


@Potter1 wrote:

Hiavrelia

i have been taking medication ,abemaciclib, and fulvestrant injection ,for just over 2 weeks ,felt quite sick and had diarrhoea last few days ,but nothing i can t cope with .Also feel quite tired ,but so far so good ,just hope it s working 

had blood test before i started ,and after 2 weeks ,levels were ok ,just hope they stay normal

hope all goes well 

xxxx

i m not sure when i have next scan ,that will be a worry 

positive thoughts

janet

xx


Hi Janet, I feel a bit tired and anxious before I even had the treatment this is probably the emotional side of things. Had an appointment with the onco yesterday to confirm I should e able to start. She said my calcium is a bit high, which is not very good but I guess when I have the denosumab today it will get back to normal. I am glad that your bloods are fine and I am praying that they will be like that for a long long time, also it is good that you are coping with side effects. I was told to give them a call on the emergency line if my diarrhea is bad, not sure what this means but I have my immodium ready, for sure. Hope everything goes well for all of us. Best wishes !

rosie53
Member

Re: Bone mets - please join in

Hi Linda, no my headaches haven’t improved if anything they’re getting worse, I’ve had a brain scan which thankfully came back clear, I’m just waiting for a mouth splint as I developed a really bad clicking/crunching jaw a few years ago which has got progressively worse and they are now thinking could be the cause??? I’m wondering if it has anything to do with the denosumab?

hope you are keeping well 

hugs Janette x

rosie53
Member

Re: Bone mets - please join in

Hi Clarence, really sorry to hear of your bone mets dx and also coping with depression which in itself is a horrible illness to deal with.

Have you ever had or thought about therapy/counselling for the depression? I only ask because last year I was really struggling with my my mood and my Macmillan nurse suggested counselling to me, I was very wary/sceptical about this but gave it a try and it’s the best thing I could have done, there was a lot of tears at the beginning but by the end of it 6 weeks later I felt a million times better!

hope this helps and also hope you get a treatment plan in place soon for the mets dx.

hugs Janette x 

Clarence
Member

Re: Bone mets - please join in

Hi I am 72 also. I have had anxiety and depression for 3 years and feel I've lost 3 years of my life.Unfortunately, I have been diagnosed with bone mets. This has happened 15 years after my mastectomy.

I can't cope with the depression as it is  and I am frightened with my bone mets diagnosis.

In a nutshell I'm a mess. I don't want to see anyone or go out. My anxiety paralysis me so I can't even keep busy. I feel very lonely.

Anyone out there got a ny suggestions for coping? If I could get rid of the depression I could get on with my bucket list.

 

Very, very unhappy in Glasgow

 

Potter1
Member

Re: Bone mets - please join in

Hiavrelia

i have been taking medication ,abemaciclib, and fulvestrant injection ,for just over 2 weeks ,felt quite sick and had diarrhoea last few days ,but nothing i can t cope with .Also feel quite tired ,but so far so good ,just hope it s working 

had blood test before i started ,and after 2 weeks ,levels were ok ,just hope they stay normal

hope all goes well 

xxxx

i m not sure when i have next scan ,that will be a worry 

positive thoughts

janet

xx

avrelia
Member

Re: Bone mets - please join in

Potter I have had no treatment yet as I was on holiday and the doctor suggested that I should start it once I am back so here I am starting this Thursday if bloods are fine and I am sure they will be. How is yours?


@Potter1 wrote:

Hope all goes well tomorrow with the new treatment Avrelia,

will compare later in the week

POSITIVE THOUGHTS

XXXXXX

janet


 

catokitty
Member

Re: Bone mets - please join in

Thank you to both of you.  i appreciate it .   I am going off today for a neurosurgical consultation and possible admission for surgery and am like a rabbit in headlights.   It is so cheering to hear about you keeping going with mets for so long and my GP said to me yesterday that it isn't the end by any means yet.  I am doing my best to stay strong and not melt down into a puddle.   I also have an appointment with oncology on Wednesday if they don't admit me today to hear about possible plans.   GP gave me some diazepam for anxiety and I am now off to take a couple and collapse on the sofa.   All the best to you and I will get back with an update xx  

LYNDYLOO
Member

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

 

 

rosie53
Member

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

LYNDYLOO
Member

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 

 

 

 

 

 

catokitty
Member

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

Hayeswen
Member

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

Annabe1164
Member

Re: Bone mets - please join in

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.

JulieD
Community Champion

Re: Bone mets - please join in

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

 

 

 

bonariensis
Member

Re: Bone mets - please join in

Thank you all of you for your kind thoughts and wishes

Bon x

 

kirky_68
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

funnyface
Community Champion

Re: Bone mets - please join in

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

Kate21
Member

Re: Bone mets - please join in

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

Stillhere
Member

Re: Bone mets - please join in

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))))
Anne30
Member

Re: Bone mets - please join in

I am sorry to hear this and wish you well x

rosie53
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

Potter1
Member

Re: Bone mets - please join in

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

kindest thoughts 

xx

Channie
Member

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

 

MaggieB
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

bonariensis
Member

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

funnyface
Community Champion

Re: Bone mets - please join in

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

Channie
Member

Re: Bone mets - please join in

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. 

rosie53
Member

Re: Bone mets - please join in

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

bonariensis
Member

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

riversidedawn
Member

Re: Bone mets - please join in

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

funnyface
Community Champion

Re: Bone mets - please join in

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

riversidedawn
Member

Re: Bone mets - please join in

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

funnyface
Community Champion

Re: Bone mets - please join in

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