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Bone mets - please join in

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Oh Linda, I am so sad to read this post about your results. Let's hope that there is something you can be given as soon as possible. My thoughts are with you.

Sending (((((cyber)))))  hugs,

Helen x

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Hi all bone mets ladies

I have posted on the CT scan results thread but I thought I would also say it here as all you lovely ladies have been such a good support over the years. 

I have not had good news today more spread to liver also 3 brain mets. Think with loosing my sister in November last year suddenly has quickened things up. 

Depending on my kidneys there is a treatment they can try. 

Once again thank you ladies for your support over the 10 years. 

Linda 

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Rosie, I've just been reading about tumeric in 'Mums not having chemo' p271-276.  But they refer to it as curcumin on google it maybe easier to find research articles using that name.

You've probably seen this but info from Cancer Research UK:

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/complementary-alternative-...

 

Best wishes Paula  (Would only advice reading the book if you like alternative ideas for beating cancer - its a daughters journey with her mum on not taking up chemo) 

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Hi Rosie

I am afraid i can't really answer your question but have come across other threads that talk about alternative supplements.  I got these book titles from reading those threads, they may cover some of what your concerned about?

'How to starve cancer', 'Radical remission', 'Mum's Not Having Chemo' and 'How long have i got'.

I hope that is helpful 🙂

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Morning i've tried searching for info on fractures but unfortunately not only is bone mets new to me but so is forums 🙂

Recent meeting with oncologist asked about doing yoga she said hmmm its in your ribs maybe a chance of cracking them when twisting. My brain almost went what the...and i didn't have the heart to tell her the week before i'd been helping the other half lift flags off the driveway.  I came away feeling like a glass doll as she's putting me on denosumab and mentioned my jaw might fracture.  My concern is how fragile am i and maybe silly question but how would i know if i've fractured something.

 

Brief history - I had mastectomy 12yrs ago started chest pains 5yrs ago but only found out i had secondary breast cancer end last yr (although now i know its been here at least 5yrs). Two ribs and sternum, maybe paranoia but feel same aches in other bones.  Stared Letrozole, zoladex & calcium/vitD will be starting ribociclib in next week and denosumab in Feb.

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@Gillyflower wrote:

Hi all!

 

I've just joined the bone mets club, so to speak. I've already browsed through a fair few posts on this massive thread, which I have to say are utterly fantastic. There is an overwhelming positive vibe to most of the discussions here and it makes me so happy to know what a wonderful community of people are here 🥰 

 

Quick intro and background for me, as I have a couple of questions about bone mets:

 

I was diagnosed Septmember 2018 at the age of 39. ER+ in left breast, quite a big tumour (over 5cm) but a Grade 1 growth. Full raft of 6 chemo cycles, mastectomy of left breast, lymph node removal and 15 sessions of rads. There was some concern at the time that there was an unknown lesion at C7 in my spine, however there was no change to this before or after treatment so Onc said we don't know what it is but right now, it doesn't seem to be cancer that's spread.

 

Roll forward to now, 8 months after finishing treatment. Back at work full time, started to get back pains, assumed it was work related (desk job). Physio saw me a few times then referred me for MRI.

 

Got the MRI results yesterday - told there's been a "vertebral body collapse with total marrow replacement" at C7, high risk of cord compression, evidence of new "metastic deposits" in T4, T5 and T10, L1, L4 and left iliac bone.

 

This is quite scary stuff for me to read (particularly as I don't understand how big or small all these deposits are and I don't know what some of the lingo means. I challenged the Onc today to ask how they can be absolutely 100% sure its bone mets just from looking at an MRI.

 

Anyway the bizarre part of all this is I have been feeling well and fine, the back pain went after a 2 week rest at work and lots of lovely walking, no pain in my neck, no symptoms whatsoever. Has anyone else had a similar experience?

 

I think because I still feel all "new" to this and having only just stepped off the treatment rollercoaster, I wanted to know if other people had experienced a similar timeframe before going from primary to bone mets?

 

I also just mainly wanted to waffle out of fear (thank you so much in advance for reading). Still sat in hospital and waiting for further scans and another meeting with Onc to determine where the disease is at and what comes next. Thanks to everyone who has shared your experiences on here, its been a huge comfort to me 😊

 

Sending love and hugs to all xxx


@Gillyflower wrote:

Hi all!

 

I've just joined the bone mets club, so to speak. I've already browsed through a fair few posts on this massive thread, which I have to say are utterly fantastic. There is an overwhelming positive vibe to most of the discussions here and it makes me so happy to know what a wonderful community of people are here 🥰 

 

Quick intro and background for me, as I have a couple of questions about bone mets:

 

I was diagnosed Septmember 2018 at the age of 39. ER+ in left breast, quite a big tumour (over 5cm) but a Grade 1 growth. Full raft of 6 chemo cycles, mastectomy of left breast, lymph node removal and 15 sessions of rads. There was some concern at the time that there was an unknown lesion at C7 in my spine, however there was no change to this before or after treatment so Onc said we don't know what it is but right now, it doesn't seem to be cancer that's spread.

 

Roll forward to now, 8 months after finishing treatment. Back at work full time, started to get back pains, assumed it was work related (desk job). Physio saw me a few times then referred me for MRI.

 

Got the MRI results yesterday - told there's been a "vertebral body collapse with total marrow replacement" at C7, high risk of cord compression, evidence of new "metastic deposits" in T4, T5 and T10, L1, L4 and left iliac bone.

 

This is quite scary stuff for me to read (particularly as I don't understand how big or small all these deposits are and I don't know what some of the lingo means. I challenged the Onc today to ask how they can be absolutely 100% sure its bone mets just from looking at an MRI.

 

Anyway the bizarre part of all this is I have been feeling well and fine, the back pain went after a 2 week rest at work and lots of lovely walking, no pain in my neck, no symptoms whatsoever. Has anyone else had a similar experience?

 

I think because I still feel all "new" to this and having only just stepped off the treatment rollercoaster, I wanted to know if other people had experienced a similar timeframe before going from primary to bone mets?

 

I also just mainly wanted to waffle out of fear (thank you so much in advance for reading). Still sat in hospital and waiting for further scans and another meeting with Onc to determine where the disease is at and what comes next. Thanks to everyone who has shared your experiences on here, its been a huge comfort to me 😊

 

Sending love and hugs to all xxx


Hi Gilly

 

i was diagnosed with grade 3 stage 1 invasive Ductal carcinoma back in March 2015.  I had surgeryx2 and sentinel lymph node testing. All was clear.  I received x4 sessions of EC chemotherapy followed by 25 sessions of radio and no way on Tamoxifen.

 

End of November I sneezed at work and pulled my back on the left hand side.  I was very sore for a few days and struggled getting up from sofa.  Pain was relieved eventually by analgesic and muscle relaxants. However, I found that on my middle right hand side of back there was unrelated pain.  I took further analgesic for 3.5 weeks and also went to physio.  I work as a medical secretary at our local hospital and spoke with the Pain Consultant about this very weirded pain that radiates to under my ribs.  He sent me for an urgent MRI, I thought it was an herniated disc.  2 days later, on the 27 Dec he knocked on my door at home as he is also a good friend and gave me the news that on the T-9 I have bc mets.  This I sent a horrible time for us and for all of us in this forum.  I am now undergoing 10 urgent sessions (6left) of radiotherapy as spinal cord was suffering compression.  I do not know what is next.  Radio oncologist will present case at MDT and decide follow-up plan.  

 

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Hey hey

I got diagnosed secondary same.TIME  as primary i was told my mets were majority of skeleton cavity with me on admission of hospital i was at risk of spinal compression so soon as had ct results the radiologist gave me emergency radiotherapy on lumber and thorasic part my back and was discovered I have crushed vertbrae and pathological fracture . I have had radiotherapy on my skull neck femur too. I'm on hormone treatment atm zoladex and lethzole which has shrunk some of the tumours ny liver deposits cant be seen.

 

However I'm in lot pain with bone mets nearly on highest dose of pre gablin and on slow release morphine and oral hormone when I need it. I had radiotherapy yesterday on t zone f spine as the pain was getting redic medical oncologist also mentioned it may help with pain relief it may not but she emailed spinal surgeon regarding my crushed vertebrae as she thinks also linked he wants up to date mri scan see if he can do anything sorry for rambling xxxx

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Hi

And welcome to the club none of us wants to be in! However we unfortunately are and we are here to support and provide some answers (if we are able) and also fully understand how everyone feels when the6 get a secondary breast cancer diagnosis as we’ve all been there.

From what you’ve said it’s sounds like it was possible that your bone mets were there at the same time as your primary was diagnosed. Although nothing changed at C7 on your spine it is quite likely it was bone mets and just didn’t respond. Therefore there may not have been progression to secondary BC after initial treatment (for your primary), it was there all the time which does happen in some cases. There are a few ladies on here who have had a secondary diagnosis at the same time as their primary so they may be help in terms of how it affected their treatment but from what I’ve seen in the forum over the years the treatment would be similar or the same and based on the type of BC that presented itself in your primary. You don’t say if you had any ongoing hormonal treatment after the initial surgery and rads so if you didn’t this presumably would have affected what was at C7, if it was a BC lesion (mets).

Hope this helps and maybe one of the ladies who has more experience with a situation similar to yours will be able to help. I hope you get some answers from your medical team soon as the waiting around is the pits!
Nicky x

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Hi all!

 

I've just joined the bone mets club, so to speak. I've already browsed through a fair few posts on this massive thread, which I have to say are utterly fantastic. There is an overwhelming positive vibe to most of the discussions here and it makes me so happy to know what a wonderful community of people are here 🥰 

 

Quick intro and background for me, as I have a couple of questions about bone mets:

 

I was diagnosed Septmember 2018 at the age of 39. ER+ in left breast, quite a big tumour (over 5cm) but a Grade 1 growth. Full raft of 6 chemo cycles, mastectomy of left breast, lymph node removal and 15 sessions of rads. There was some concern at the time that there was an unknown lesion at C7 in my spine, however there was no change to this before or after treatment so Onc said we don't know what it is but right now, it doesn't seem to be cancer that's spread.

 

Roll forward to now, 8 months after finishing treatment. Back at work full time, started to get back pains, assumed it was work related (desk job). Physio saw me a few times then referred me for MRI.

 

Got the MRI results yesterday - told there's been a "vertebral body collapse with total marrow replacement" at C7, high risk of cord compression, evidence of new "metastic deposits" in T4, T5 and T10, L1, L4 and left iliac bone.

 

This is quite scary stuff for me to read (particularly as I don't understand how big or small all these deposits are and I don't know what some of the lingo means. I challenged the Onc today to ask how they can be absolutely 100% sure its bone mets just from looking at an MRI.

 

Anyway the bizarre part of all this is I have been feeling well and fine, the back pain went after a 2 week rest at work and lots of lovely walking, no pain in my neck, no symptoms whatsoever. Has anyone else had a similar experience?

 

I think because I still feel all "new" to this and having only just stepped off the treatment rollercoaster, I wanted to know if other people had experienced a similar timeframe before going from primary to bone mets?

 

I also just mainly wanted to waffle out of fear (thank you so much in advance for reading). Still sat in hospital and waiting for further scans and another meeting with Onc to determine where the disease is at and what comes next. Thanks to everyone who has shared your experiences on here, its been a huge comfort to me 😊

 

Sending love and hugs to all xxx

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Hello  all

It does take a while to get head around it was only two days ago in which I cried for third time since diagnosis.

 

Tomorow starts for me a busy week but begins with ringing up radiotherapy department I had telephone call saying inwas going to get ct planning and treatment on tuesday coming up but I received letter yesterday and they dated it Monday 7th january which has baffled me my mum and dad. So have ring early doors tomorrow as due to get my blood taken at half ten at doctors surgery see if I can get my desenaaaub on the Wednesday xx

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Hi Linda, thank you for your reply.

yes it is a bit of a shocker! After the initial shock/panic I’m actually quite chilled now (which is not like me!!) I just want this MRI out of the way so I know what I’m dealing with but that’s going to be weeks away yet!!

Hope you are keeping well.

hugs Janette xx

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Hi Janette 

Just seen your post about your scan results. So sorry this has happened. It is a shock when we are told it has spread. It is now just over 2 years ago when I was told it had gone to my liver. Looking back I was lucky I managed 8 years with bone mets although after 4 years my treatment got changed as I had had slight progression in bones. 

Good luck with your MRI

Linda 

 

 

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You’re very welcome. Yes, it’s Unicorn Grocery! It takes me about an hour to get there but I go every week, initially it was for my fruit and vegetables but I buy all sorts there now, I love the place! Some things they sell aren’t organic but all the fruit and veg are. It’s usually on the top row near the fresh chillies and garlic. 

I’ve just looked on fb (btw you’re not alone I only joined after my diagnosis and don’t do all the friends stuff!), it’s typical of anything to do with supplements, some say their Oncologist advised against it, others that their Oncologist advised they take it! Seems a bit like Soya and linseed, some say to avoid linseed yet all the research I’ve read is strongly in favour of adding it. I did read one interesting comment which said, all the research now points to eliminating processed sugar, yet many are happy to eat that! While I do take supplements if I can add things in food form, rather than as a supplement, I do. Hope things get sorted for you soon... Kate xx

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Yes I do live in the area (well 20 minutes away) is it Unicorn Grocery? I’ll nip in next week sometime.

Thanks for all the info Kate, much appreciated.

hugs Janette xx

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Janette, I’ll take a look later and see if I can see anything. There are a lot of people with various illnesses, including cancer, in that group who take it. If you live in the area and don’t just go to the Christie for your treatment I’d go to Unicorn and buy fresh organic turmeric (they also have the powder) and add it to your cooking, you can cut it up for casseroles etc or just grate it into things like porridge, I don’t find it alters the taste but it does stain things orange! I wouldn’t have a clue about the cost of an MRI, I know someone who paid around £800-900 twenty years ago for a CT! Kate xx

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Thanks Kate, I think I’m the only person in the world who’s not on Facebook!! Lol really do need to get in the modern world, I think I’ll have to get my daughter to get me on it.

 I got my appt today for the liver MRI, 3rd February!!! Hubby has been on the phone to the Christie (where I’m treated) today to see about getting it done private, just waiting for a call back although I feel it’s going to be very expensive!

hugs Janette xx

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Hi Janette, I don’t take capsules, did do when I went to America on holiday, but I do add a lot of turmeric when I cook, also to juices and smoothies, and I’ve been doing so for about 4 years now. I haven’t read anything about not taking Turmeric with Letrozole, have read something about taking it with Tamoxifen, did say it was still fine for culinary use. If you’re on Facebook there’s a really good group called Turmeric Support Group, the admins are really keyed up on all things Turmeric related. Kate xx

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Hi ladies, just a quick question, dose anyone take turmeric caps or know anything about them?? 
I’ve been taking for around 3 months but have just been reading that caution should be taken with hormonal conditions as it could make hormone sensitive conditions worse!! 
hugs Janette x

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@4748 wrote:

@MaggieB wrote:

Hello,

So sorry you received such  dreadful news, at this time of year especially. But you've come to the right place, so many lovely people here with positive approaches and experiences, even though the diagnosis is awful. 

If it's just in your bones, once you have radiotherapy or whatever is needed to get the pain under control you can receive bone strengthening and other treatments to stabilise the cancer and strengthen your bones.

We are all different with our diagnoses and response to treatment, but I  found out I had secondaries in my vertebrae (T9 & 10) two and a half years ago and one was actually broken.   Like you I had dreadful pain extending round to the ribs. But now I do aerobics, weekly shopping, walk loads and all the rest.  "Just don't do star jumps" said the  physio!

Good luck with radiotherapy and the PET scan, keep us posted and may you enjoy a good new year.

Big hugs

MaggieB


Many thanks for your encouraging words.  Started radio low dose radio today.  The pain is just as you describe it.  I cannot sit for more than 10 minutes without having increasing pain at L-9 right hand side and that awful knot under right rib.  I cannot wait to be able to sit up in car, having to lie back all the way.  reached this point of pain in the last 3.5 weeks.


MaggieB, forgot to ask, did you have radiotherapy or surgery to those vertebrae and how long before you returned to normal with regards to pain?  It just feels it is never going to get better. Today I had my PET scan done and I am very anxious about results.

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Hey all 

How we all? Im full of Cold slowly going but think my cough may linger. 

 

Done not much last few days just sleep meds eat

 

Im preparing myself for next week in which I have blood test Monday Tuesday ct planninf and radiotherapy treatment on back Wednesday if nt bloods are alright back into hospital I go to get this denaasaub injection Thursday afteenoon ive got cofee date and get mt brows. The weekene nt sister neohew hubbt coning uo depending how I feel a meal out because my birthday week aftee hoping radiotherapy doesn't wipe ne out too much xxd

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Thank you Kate, good luck with your scan.

hugs Janette xx

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Hi Janette,

Just wanted to say I’m thinking about you. I have a scan coming up and can’t help thinking my luck will soon be running out, as I’m well into my 5th year post diagnosis now and, as I was dx straight to stage 4, wonder how long “it” had been lurking! 

Hope you get an appointment sooner rather than later. Sending you a hug...

Kate xx

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Hi Nicky, thank you so much for your reply.

Probably sounds pathetic but I literally feel like I’m in a dream!! I know I have been extremely lucky to have been stable for 6 years with easy treatment and I knew that at some point the nasty beggers would raise their ugly heads again but I still feel like I’ve been slapped in the face! 
The worst thing is this waiting around for my MRI I’ve been on the phone this morning and there are no appts at all through January so I asked if I could go on a cancellation list and was told there’s also a cue on that so it’s hanging around now for at least 6-8 weeks before I know anything else!!!! I just to know whats going on and get started on any new treatment.

sorry for the rambling, just feeling so stressed out at the moment!

hugs Janette xx

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Hi Janette - and big hugs to you.

I know what it feels like to get a diagnosis of another site/organ after years of bone mets.  You get lulled into a false sense of security don't you.  I had about 5 years on Anastrozole after my bone mets were dx and no other organ involvement and stable bone disease for pretty much all those years.  After an unrelated pain in my hip I had a CT which showed up liver mets - and an increase in the bone mets.  I was aware that it is unlikely to 'only' have bone mets and that at some point they might spread but I had hoped it wouldn't happen to me.

Anyway I went on to Capecitabine which worked for about 18 months (this was back in 2013) and have been on various other treatments since then - as we all are in one form or another.  My team tends to swap between a hormone treatment and chemo (which knocks the uggers back a bit more aggressively) which has worked successfully since. 

You could ask for a liver biopsy but these are not always possible due to the siting of the lesions, this would determine whether the receptor status of your BC has changed however it sounds like it's probably the same as the bone mets, it's just got clever and got around the barriers that the Letrozole had put up.

What will be a shock, which it was to me, was suddenly to be back so often at the hospital and back on the treadmill.  I had had 5 years of just picking up my hormone treatments from my local chemist with the odd 3 monthly or 6 monthly oncology appointment so I found it very unnerving.  However if you are put onto another hormonal you may not need to be going there as much as I was when I was on capecitabine.

Good luck and feel free to PM me if you want, I'm also hormone positive, HER2 negative as you are so have been through a lot of related treatments!

Nicky x

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Hi ladies, I’ve not been on the forum for a while, but yesterday I got a call from the hospital to go and see onc regarding my CT two weeks ago, they have found a few “spots/nodules” on my liver, (been stable for almost 6 years with bone mets) onc has requested an urgent MRI to look closer then they will take it from there.......roll on the waiting game!!!!! 
Just wondering if anyone has any info/ experience on this, she said it will be a change in treatment ( been on letrozole for over 5 years) I don’t really research treatments I kind of like to deal with things as and when needed! 
hugs Janette x

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I find most difficult bit is pain i was diagnosed in june  but was having back pain before that. Ice had radiotherapy various parts of body and irs worked wonders.im getting more next week for some pain relief and put forward for mri scan due maybe surgery which heard can be very successful xxxxx

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@MaggieB wrote:

Hello,

So sorry you received such  dreadful news, at this time of year especially. But you've come to the right place, so many lovely people here with positive approaches and experiences, even though the diagnosis is awful. 

If it's just in your bones, once you have radiotherapy or whatever is needed to get the pain under control you can receive bone strengthening and other treatments to stabilise the cancer and strengthen your bones.

We are all different with our diagnoses and response to treatment, but I  found out I had secondaries in my vertebrae (T9 & 10) two and a half years ago and one was actually broken.   Like you I had dreadful pain extending round to the ribs. But now I do aerobics, weekly shopping, walk loads and all the rest.  "Just don't do star jumps" said the  physio!

Good luck with radiotherapy and the PET scan, keep us posted and may you enjoy a good new year.

Big hugs

MaggieB


Many thanks for your encouraging words.  Started radio low dose radio today.  The pain is just as you describe it.  I cannot sit for more than 10 minutes without having increasing pain at L-9 right hand side and that awful knot under right rib.  I cannot wait to be able to sit up in car, having to lie back all the way.  reached this point of pain in the last 3.5 weeks.

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Hello,

So sorry you received such  dreadful news, at this time of year especially. But you've come to the right place, so many lovely people here with positive approaches and experiences, even though the diagnosis is awful. 

If it's just in your bones, once you have radiotherapy or whatever is needed to get the pain under control you can receive bone strengthening and other treatments to stabilise the cancer and strengthen your bones.

We are all different with our diagnoses and response to treatment, but I  found out I had secondaries in my vertebrae (T9 & 10) two and a half years ago and one was actually broken.   Like you I had dreadful pain extending round to the ribs. But now I do aerobics, weekly shopping, walk loads and all the rest.  "Just don't do star jumps" said the  physio!

Good luck with radiotherapy and the PET scan, keep us posted and may you enjoy a good new year.

Big hugs

MaggieB

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@Daylightdancer666 wrote:

Hey funny face im eewkkt hoping the spinal surgeon will carry it out sick of. Pain im in just hsd second dose of oral.morphine kd the day before my shower as that triggers it along witj every otner meds I'm like a rattle like fulk or cold xxx


Hi all

Diagnosed with secondary bc on T-9 vertebrae only 6 days ago.  In pain which radiates to under ribs.  Starting radio today and will be having PET tomorrow.  Really scared of dying, is this it?  Initial diagnosis almost 5 years ago.  I need encouragement.

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Hey funny face im eewkkt hoping the spinal surgeon will carry it out sick of. Pain im in just hsd second dose of oral.morphine kd the day before my shower as that triggers it along witj every otner meds I'm like a rattle like fulk or cold xxx

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I did so well with that surgery. It was two years ago. For me it was the best thing ever. I hope if you have it that it works as well for you! Best wishes!  It's called kyphoplasty! Just noticed my post from before changed the name of it. Good luck! FF

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Ooh glad you popped this uo lynsey loo 

 

Hey hey funny face i dinslkt gor referred to medical oncologist who i saw on xmas eve hsd referred me to radiotherapy as she thinks its skm mechanical regarding crushed vertebrae.

 

So she emailed spinal surgon who hss requested up to date mri she has requested ss urgent as my pain since last speaking to you got hell worse ive been on steriods on xmas day km taking more oral morphine but she mentioned procedure you mentioned sound promising how you been since xxxx

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Bumping up as slipping down page

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Daylightdancer, I don't know if you know, but I live in the states. My operation was same day surgery.They did plan on me staying bc of my lung mets. They came in after surgery and let me go home. I had no pain when I left! FF

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Hiya 

Ive had mri before depending on results with ct they may refer me to have one. 

How did your procedure go were you just day case 

Xxx

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Daylightdancer, Get an MRI of your back. My vertebrate broke at T-11 & T-12 after having hiccups for an hour. They had to pin it and cement it. Called kyphoplasty. Pain free afterwards. FF

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I know that feeling my femur and hip got painful ages ago got point barely walk mentioned radiologist ans she said I had lump of cancer there so I got radiotherapy and touch wood it hasn't returned I'm starting to worry my crushed vertebrae is csncee with how much pain I'm in xxx

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Hi Cazzy , thanks I yes really devastating losing my lovely mum ! , I’ve been on an Anastrozole for last 5 years and has worked well but this constant pain in my lower half is making me feel that things have changed ! You can almost put the whole cancer thing in another box until you get a pain flare up and all the worrying thoughts just get brought to the front of your mind !! X

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Hi 

Helen sorry to here about your mum what medication you use I find my knee been painful mostly from lethzole.

Love and hugs 

Cazzy x

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Hi all 

been a while since I posted ,I’ve had bone mets since 2012 , with very no real progression over the last 5 years !! However for last 3 weeks had groin , hip and knee pain pretty much constantly, really worried that I have progression,has any one else had any experience of this ? Hoping its rheumatism but probably not , been stressful 6 weeks as lost my mum and now thinking it’s brought this to the surface ! 
Helen x

 

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Hello. 

Ive not experienced treatment you are on but hope side effects don't get any worse for you 

 

Unfortunately upping my morphine was not working. So I rang my macmillan hadn't spoken to her for while so I ended pouring my heart out to her so it was decided to up by pre gablin to 250mg twice day I needed a review at gps about my anti depressants as I'm struggling she referring me to physcologjst.

Anyway went to gp she upped my anti depressants was very reluctant to give my lorazpam which I have when I'm anxious because I shake etc I don't have it often considering Im nearly finished box I got when discharged in June which irritated me slightly but I gotta be careful with the meds I'm on also mentioned cramp in my leg and thought was due low calcium and as there long time between oncologist appointment wanted blood test but she said cknd back next week and I said is there anything can do about it and she mentioned well your calcium low and eat yoghurts yet I know you can get quinny so Cazzy not best pleased

 

Good news mum's operation went well and she's home

 

Xxx

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Hi all, I have started treatment with Docetaxol on 18.11.2019. So far I have been well apart from the past two days when I was feeling as if I had a flu. Today much better and will go outside for a small walk. Hope everyone is feeling warm and painless. I will be using also the cold cap which I find managable, so hopefully it will work. How many rounds of Docetaxol have you been having? I have been told that possible 6.

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Aye I'm in 32 the increase from 20 to 30ng seems helped no oral morphine been in bed lot today didn't sleep well got sleep. Half four

 

I agree it's just not pain physically it's emotionally as well everything adds up especially in my case when my mum got diagnosed two days ago with thyroid cancer which is crap and got. Welfare meeting tomorow at work as been off six months hoping. I sleep better tonight I've had lovely hot shower in clean pj's and. Just gonna eat remains of take away curry watch masterchef head to bed xxx

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I am sorry that both of you have got increasing pain, and yes it is very scary as the cancer journey is always associated with pain in suffering, but I would say that sometimes our pains are not definitely from the cancer itself. I know that this may not matter to you but for me it does as I know that combined with the cancer journey we are not getting any younger. Please, however do not suffer in silence, as your oncos about ways to decrease pain, try also natural anti inflamatary sources, do not give up to the panic, I know it is hard I am in the same boat too, I know that it is gradually going to sink, but we need to face the problem, accept it and go on trying to live as long and as well as we can. Do not know where you are based but from my experience CBD oil helps with pain and sleepless nights. 

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I've not yet had my scan due it end this month but me too my pain increasing I'm in 20ng zoromoroph twice daily had two lots of 4ml of oramorph so far today plus two lots of paracetamol as slept over was supposed be half eleven  second dose had ten to one.

 

I dunno if knee joint pain from lethrzole as they changed my brand or what but I know my crushed vertebrae been painful few days 

 

Xxx

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Bone pain. My latest scan showed nothing much changed but my pain is gradually increasing. I have a new pain in my right arm (xray showed a possible something, bone scan showed up nothing) onc has requested an mri on that arm. The sternum pain is also flaring up at the moment but I've had radiotherapy on it twice already so not sure what other options are left. I so much want to be pain free. I'm on 40mg Zomorph twice a day and recently been needing to take extra Oramorph during day and an extra 10mg of Zomorph before bed just to be comfortable. Any other suggestions that people have found helpful?

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Hi Nicky yes I have not posted for a very long time, I tend to stay away from the forum, as I hate letting everything connected to cancer get most of my time and attention. I work and this is something which distracts my attention and by feeling that I am ale to do it, I gain much confidence. I hope it will be like that for a longer period though...

Thanks for sharing your experience with me, I feel very reassured now once I see that someone found it manageable. I have started thinking of agreeing to the Docetaxol treatment as I am thinking this is not going to affect so much my quality of life. And after all if I cannot  bear it it could be changed to the "milder" dose or ...who knows....A decision should be made and I need to carry on somehow. I think I just lost my confidence and will to fight which I had 3 years ago when diagnosed. A lot of things have changed and it cannot be another way as I have entered the menopause and the disease progressed a little.. I will ask definitely about a second opinion and thanks a lot about the information you have provided. 

Hope everything goes well with you and you do not find making decisions so difficult like me. How many treatments have you undergone so far?

 

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Hi Avrelai, it’s been a long time since you posted on here, which is good thing for most of us!
Sorry to hear that you had a scary situation with Cape, I’d never heard of a cardiac spasm but I expect it’s put your oncologist in the mind of not continuing with it, even at a lower dose. In my experience oncologists may be experts in their chosen field but understandably are not experts in other linked fields such as cardiology despite them overlapping quite a bit. I also fully understand your dilemma about which treatment to start next and it’s always difficult when you, as the patient, are given the choice. I have been in a similar situation and it’s not easy weighing up the pros and cons of effectiveness of a particular treatment over another one against quality of life ie not ‘living’ at the hospital every week. I am expecting to have to make some similar decisions soon depending what my recent scan shows and even if not immediately it won’t be much further in the future. 
As to advice about the 2 chemos I have had docetaxel, back in 2014, and found it easier to cope with than the first chemo I ever had FEC, which is the worst by far. I hated being on steroids and the side effects you get from coming off them. Like one of the other ladies I did suffer from constipation but I think that’s the steroids. The first cycle gave me horrible nerve type pain but I didn’t get it on any other of the 6 cycles I had in total. I did loose my hair (again) but it did grow back after chemo was finished. I did find the cumulative effects of chemo affected my levels of fatigue but was able to go about doing general things in between cycles. My concern, as your is, about pacitaxel (which will be the next recommended chemo for me) is that you have it weekly and your life is ruled by blood tests and chemo visits. 
A couple of suggestions for you is an you get a second opinion, at a separate hospital/centre of excellence so you get a different view. Also, but this might be a bit of a long shot and depends where you live in relation to travel, can you get a referral to the cardio-oncology unit at The Brompton hospital in London? They specialise in heart related issues caused by cancer treatment and is an NHS run clinic. I have been under their care for 6 years now, initially with a lot of additional cardio care but more recently as an annual checkup.

Good luck with whatever treatment comes next and hoping it works well for you.

Nicky x

 

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Hi avrelia, 

 

Best to speak to your onc about it. Don't forget you can always stop and change treatments if it's not working for you, the choice is yours. 

Dont worry too much about it, just take it day by day. 

Best wishes xx

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Oh Channie I see now. I cannot immagine myself to go to the hospital every single week for chemo, my breastcare nurse explained to me yesterday that there is pratically almost no difference between the two drugs they have offered to me and  I only need to think in terms of time, as Docetaxol is going to be given every 3 weeks and Paclitaxel will be every week. However what I have been reading is a bit different as it appears that both of them are from the same family but with Docetaxol you are less likely to develop neuropathy, but hairloss might be permanent. Also according to some studies Docetaxel is delaying the progression more effectively.....I am still struggling to understand everything and also the fact they they have not offered to lower the dose of the Xeloda and see if it will be working. Is there anywhere I can go and speak to someone in person about all these, or I might even get more frustrated. My haed is a chaos. Sorry all that I am such a moaner these daysXXX