Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

Hello newbie to group !

Puppylady
Posted by

Hi 

I have just joined the group so thought I would say hi and explain where I am in my treatment etc 

i had breast cancer two years ago with a lumpectomy carried out followed by radiotherapy but no chemo 

Then in April/May this year I was diagnosed with secondary breast cancer all up my spine and in my neck. The cancer has fractured the C2 disc in my neck so I have to wear a neck brace 24/7 as sadly my neck is classed as unstable.

I have been signed off sick since March as I can don linger drive and get tired very quickly plus can only walk short distances before getting pain in my back.

I am on palcociclib and letrazole with monthly bone strengthening injections. I don’t seem to get many side effects perhaps just the tiredness. I have just had a CT scan and MRI scan and I am due to see oncologist on 7th November to discuss the results to see if the chemo tablets have had any effect on the cancer in my spine.

i get so frustrated that my body won’t let me do things that I want to... if I do too much I am wiped out for the rest of the day or even into the next day. I want to be able to work but that seems unlikely at the moment and I certainly can’t go back to the job that I was doing and love so much as it’s a very demanding and physical job involving lots of driving and walking.

i think it’s easy to feel isolated in this battle with a treatable but not curable disease as the future is so uncertain...

Any way that’s me .. happy to chat to people as it’s good to talk as BT used to say lol 

IamLyn
Posted by

Hello

Just though I would say Hi.

I am newly diagnosed (April this year).  First time diagnosis and also have spots in hip and bottom of spine.  I also have osteoporosis in the same spot.

I am on the same treatment as you (Letresole, Palbo and monthly 'bone juice').  I have just had my second scan since diagnosis and am currently waiting results.  I have not as yet had too many side effects and hope this will stay this way. I do however get lead legs the following day after bone juice and do get tired if I do too much.

Please try and stay positive and remember whilst not curable (YET) we are treatable.  I personally find this room to be a little quiet at times.  please go and have a look in the secondary breast cancer room.  There is a thread on there started by Noswad1 - 'Positive stories only'.  Which you might find helps as well. I would put a link on this response but I am technoshite.  Please do take a look.

It must be frustrating to have to give up a job you love so much especially after what it seems being so active a well. I cannot relate to that right now as I am still able to work full time and can still drive. There will be other members on this site who can relate to that.

Hope your appointment on the 7th brings better news.

Lynx

razzy
Posted by

Hi Puppylady

i am newly diagnosed with extensive bone mets( found first) then they found primary behind nipple after biopsy.

I am on the same meds as you and will be finishing my first cycle on Sunday. I am pleased you don't have many side effects. I know it's early days for me but was worring as I too have few side effects and was thinking it was not working.

At the moment I am still working full time and also feel wiped out at end of the day but have felt like this for 12 months since my back started giving me Jip.

I hope everything goes ok with your visit to oncologist in November.

Keep smiling

Joanne xxx

Joanne

Daylightdancer666
Posted by

Hello guys

I'm Cazzy ages 32 diagnosed breast cancer mostly spine but had in skull neck femur m, in on lethrzole zoladex started precliobib but hot bad effecrsc so came off it had bone juice one month unfortunately though since then calcium low I had calcium d 3 but still low trying cakcitm. I have I got diagnosed June this year have crushed vetbse from cancer I've had radiotherapy on my lumber and thorasic plus neck skull and femur got scan 18 June got scan anxiety live with mum and dad mum more or less diagnosed with thyroid cancer =( so mental health taken djve

I feel frustrated not working as used be carer for elderly but like you get tired so easily I went to Leeds weekend slept most Tuesday that what I'm like with doing if busy one day need rest day xxc

Love hugs and cat paws 
Cazzy xxx
Nickyd1
Posted by

Hi all

I am just waiting to have my diagnosis confirmed, GP ordered scans after going with pain in my sacroiliac joint. Ct scan is showing a lesion there and two spots at the top of my legs. Gp has referred me back into oncology. 

I had breast cancer treatment in 2012 aged 40 and have been taking tamoxifen ever since. I’m gutted that it has come back but trying to put on a brave face for people around me. I’m waiting to hear what treatment I’ll have so I’ve been reading here about treatments. I’m guessing they’ll have to look at hormone therapies as tamoxifen hasn’t been doing it’s job particularly well. 

I think I’m lucky in that I am able to still work, I’m on top of the lower back pain now. I work a lot from home so I can work appointments round it and it’s a charity so they are very understanding. I’m hoping that they carry on being like that!

nicky 

Peebee2
Posted by

Hi Nicky, 

you must feel poleaxed right now, I was also diagnosed with breast cancer in 2012 I was 43 and was told they had it all, had chemo and radiotherapy and then back to work and then diagnosed last year with  metastasis in my spine (most of it) all of my sacrum SI joints a spot on my rib and and neck, I was shocked to say the least as I had been on Tamoxifen for the 5 years, and find out the year I thought I was free it was back with a vengeance but after the fear, anxiety, and many many tears, I thought right, game on and I have fought ever since, I was given another hormone therapy called Letrozole and it didn’t agree with me I had severe leg pain from it. Eventually I was put on oral chemotherapy it is working on keeping all of my tumours stable and I am leading a full life, I had trouble with some pain after my radiotherapy and I was unable to walk afterwards so I phoned Macmillan and they were superb! They got all my meds sorted and within a week I was back on feet! Please call them if you feel your pain is getting too much and someone can come out and see you. 
I look after my grandchildren and have enjoyed a week abroad in the sun this year and I’m planning more holidays! Please don’t overthink the news you have, wait until you have all your results and have a treatment plan in place and then take each day as it comes and be kind to yourself, it’s great your employers have been supportive and that you can work from home but don’t overdo it, rest if you need to... I’m always here for a chat if you need some advice, the women in here are a mind of information as we have all had different journeys.

Sending you a big hug Nicky,  Jo xx

Nickyd1
Posted by

Hi Jo

thank you for that lovely message, it has really heartened me to hear how well you are doing. Sounds like you have a similar story to me and yes, it really does throw you doesn’t it when you think everything is ok. 

Like you I was on tamoxifen and I keep wondering how I could still develop bone cancer. I reckon they will try letrazole with me but I’ll have to have zoladex as well as my ovaries are still functioning. I was really wanting to have radiotherapy to my sacroiliac joint but not sure that will be the first treatment.

so pleased you are going on holidays, I was feeling pretty miserable at the thought of not doing things I love including being on holiday! 

Youre right about my job, I do have to preserve my energy. I’ve started a Pilates class and that really helped the other day but I came home exhausted and had to work from my bed! I think I need a holiday now as the strain of the past few weeks has really taken its toll. 

Anyway, off to the pub to watch the football, normal things like this are keeping me sane.

thanks again Jo, you’ve really made a difference to the way I am thinkIng.

Nicky xxx

Peebee2
Posted by

Ah fabulous, I’m so glad my message has made a difference, I also have a zoladex inj each month I feel no pain in having this jab where others do, but I just find it another thing that gets in the way of my life! Haha... 

Its good to hear that your resting and taking it easy with work, I’m not sure if you have heard of pip it’s full name is personal independent payment, if your hours reduce and you feel your struggling you can apply for that to help you, I’m claiming it but I’ve had to give up work because of the tiredness I feel, you can go to your local resource centre where there is usually a Macmillan support worker who can help you fill the form in, you can still work and claim it, it’s just good to have incase you have a bad day or have to reduce your hours, it’s worth a look if your interested. Hope you enjoyed the footy, I’m a Toon fan! 
Love Jo xx 

Nickyd1
Posted by

It really does help to hear that you’re doing ok. I reckon I’ll be on the zoladex too. 

Just heard that I’m seeing the oncologist 4/12.  Bone scan and biopsy of rogue lymph node before then. 

Thanks for the heads up about PIP, I’m really hoping to continue work, I was at a training day yesterday and had a little tear when I came out at the thought of losing the work that I enjoy. But I’m not there yet so I’ve put that self pity to one side! 

I like to follow the toon, I was a student in Newcastle and then worked there and felt I lived some of the football ups and downs! I think you’re sort of on an up again after a down! We support Hull city - now that is  painful  Our owners are hated! 

Nicky xx

Peebee2
Posted by

Hi Nicky, 

Hull city!!! I wouldn’t dare  

You must have seen some cheers and tears coming from the ground, my sister lives in Gosforth so I’m a regular up there, I’m from Hartlepool... don’t say anything   
I was shopping up there last week and I’ve pulled some muscles in the tops of my legs, my nurse is concerned it’s a cord compression but I have no pins and needles and my bladder and bowels are all still intact and not doing there own thing so I’m not convinced, only way to find out is a MRI so I’m waiting for a call to find out, but she has left me some steroids to take, that’s what they would treat that with so the side effects are I will be like a starving horse!!!! Oh well, kill or cure as they say. 

Hope your doing well Nicky, love Jo xx 

Nickyd1
Posted by

Hi Jo

Ooh I used to live in Gosforth, my friend still lives in south gosforth and I was there the other week to see Les Miserables at the theatre royal. It’s changed loads since I lived there. I have never had the pleasure of a Hartlepool trip, that would be tough as a supporter! We are playing West Brom on Saturday, another tough one. 

Sorry to hear about your legs, it’s good that they are scanning you but that adds more anxiety doesn’t it? I don’t really know what spinal cord compression is? You know your body and how it is working though. I hated steroids when I had them before chemo, I’d go high and like you say eat loads, then have a big come down after. Needs must though, best take them. 

All ok here, been helping a friend with prep for a job interview. She is supposed to be supporting me but we are back to normal with me helping her! Nearly the weekend, ready for some rest. Hope you have a good one,

nicky x

Peebee2
Posted by

My sister is in south Gosforth, small world! 
I feel a bit better today but the steroids have kicked in so maybe that. I’m going out tomorrow but in my wheelchair ( borrowed from a friend ) I need to still rest but I’m demented in the house. 
West Brom eh see what that brings, pools have Yeovil away 1st round 

I’m glad your helping your friend as it keeps your mind busy.... I will probably have my head in the fridge eating everything tomorrow but if sorts my legs then hey ho 

Big hug Jo xx 

Nickyd1
Posted by

Sounds like the steroids are kicking in if you’re desperate to get out, hope you do as fresh air always helps, whatever the weather. Maybe get a fridge lock when you are out  or have a load of carrots chopped up and some hummus!

C’mon ye Pool and ye Tigers! 

Nicky x