Bone mets - please join in

[cat71]

Hi Artygirl2061 

I have recently learnt Emotional Freedom Technique (EFT) which has really helped with my anxiety levels. It's a simple technique of tapping various parts of your body (accupunture points) whilst repeating a statement. 

My crippling anxiety has stopped. I found doing this before my oncology appointment really helpful. 

[micky140]

Hi.  I am 17 months on, started on Palbocyclib, Anastrazole and Denusomab.  First 7 months I was really really well, then I has rashes that lasted 12 weeks - partly my fault for not contacting Macmillan and GP initially - and then a rash around the site of the 3rd denusomab injection.  I am now on 3 monthly Zolendronic infusions - if you change to these  follow all the advice about drinking loads of water and taking paracetamol the day before and note that mine are given on a chemo ward.  

The Palbocyclib dosage has been reduced this year as it made me feel very tired/exhausted but other than that and brain fog I am still keeping well.  I can no longer sew for more than 20 minutes a day, or follow complicated texts/novels, etc.,  so I have had to come to terms with what I am now able to do but, you know, everything is still working, I can rest when I’m tired, and the medication has kept everything stable.  

[Loulou1007]

Many apologies I thought I had started a new thread but don't think I have, unsure how to start a new topic. 

[Loulou1007]

Hi all

May I ask anyone who is on Fulvestrant how much do they give you at treatment. I am currently on 125mg x 2 (two injections) I read online that 500mg has been more successful with patients. As I am new to secondaries I would like to receive the correct treatment to keep me going as long as possible, like everyone here. I have an Oncologist telephone call on 13.8.21 and will also ask then but sometime I feel they follow the company line, maybe because of cost etc.

I had a blood test today and the nurse kindly called me with the results my CA15-3 was 71 and today was 77 would anyone know if this is s concern? When diagnosed my CA15-3 was 81 so it is still just below this. I also read that tumour marker testing is an indicator but unsure and a little worried why my CA15-3 has increase. I have also been off Palbciclib for 1 week as take for 3 weeks followed by one week off I was wondered if this has been the case with anyone.

Thank you for help with my query.

Louise x

[artygirl2061]

Hi Shirley 

Thank you for getting in touch. I really appreciate it. 

Starting treatment today of Palbo, Fulverstrant and Denusomab.  It would be great to hear from anyone else on this regime in terms of how they are finding it. 

Hope that you manage the Cape with not too many nasty SEs. 

This is such a great, reassuring forum and is really helping me as I only got my diagnosis a few weeks ago and am still experiencing moments  of really crippling anxiety. 

Sharon xx

[Timmycat]

Hi Sharon, 

I've only just seen these posts, and am so sorry to hear that your cancer has returned in your bones and liver.

I was diagnosed in December 2019 with secondary bone mets, since round about the previous September I'd been suffering with the most excruciating pains in my ribs, back, hips and pelvis.

I was put on Ribociclib, Letrozole and Zometer for bones in January 2020, and my local hospice sorted out the pain with continuous morphine coupled with paracetamol. The relief was a long time coming but oh my goodness it worked, 

In May this year unfortunately the drugs stopped working for me and the evil cancer had spread to my liver.

I'm now into my second week of Capecitabine, the lovely ladies here gave me loads of help, advice and hope.

I wish you all the best, 

Shirley xxx

[pennyb57]

As mentioned previously I was diagnosed last year and this year (spine, ribs, sternum, pelvis, sacrum, and goodness only knows where else.  I am currently on palbo and anastrozol (changed from letrozol), and what I want to know is how pain being managed other than loads of pain relief ie is this normal? 

[SondraF]

At diagnosis I had one sacral met causing a lot of pain and weak leg problems, but after scanning they found mets to L3, 4, 5 and an extremely tiny met on one hip. The sacral met was radiated and I have never had pain from the others. Ive been on Ibrance/letrozole for 18 months now and its also halved my original breast tumor size as well (which apparently won't come out unless it shows activity and regrowth). My neutrophils tend to run low, but MO is happy to let me continue on 100mg as I feel absolutely fine and have plenty of energy to work, exercise, and socialize.

[Loulou1007]

Hi SondraF

Thank you for your time in replying and you positive message really has lifted me. I had my very first set of treatment on 1.7.21 of Denosumab and Fulvestrant and my hormones emotionally have really been effected. 6+ years on the first line of treatment gives hope and makes me smile. I did google Oligometastases which I have never heard of before but didn't really understand what this meant. May I ask where your cancer is and how long also the treatment you are on? No worries if you'd rather not. I do wish you well.

Why can't Oncologist be more positive like everyone on here surely it helps the patient. I find mine follows the company line I am only human a good kind human at that!

Louise xx

[SondraF]

If you are on denosumab and its right before your next injection it could be hormone levels coming up slightly. Or at least that was my theory anyway as to why I felt PMT-y at the end of a cycle! 🙂 Since I had my ooph I haven't had that feeling at all.

Loulou and other new ladies - I know a woman who is mets to bones only and is on her 6th year of the first line of treatment of palbo+letrozole etc. She scans once a year (in the US) which to me seems insane but I guess it works for her! Some oncologist telling you 4-5 years when you have three bone spots is the height of foolishness, especially when you see new studies coming out about oligometastases (less than five mets) and new thinking around management approaches that are more tailored to the patient. The palbo and AI therapies are great, but it does seem very regimented and NICE process driven when there could be even more tailoring happening. But that takes time and costs money and won't happen on the NHS (or even privately!)

[Loulou1007]

Thank you Phoebe for taking the time to reply. Firstly I would like to wish you a happy 50th birthday next week 🙂

I take on board what you say about PMT it does feel like that. I have only been on the Palbo for 5 days and they warned me about I could become neutropenic so I am having blood tests to what bloods. I always ask for a print out of my blood results after having a test. I have only just joined this group but reading many posts does inspire and give me hope. It is all very raw and a shocking discovery when you are more or less told they didn't think I had secondaries, thanks goodness I pushed for that blood test. Louise xx

[Loulou1007]

I am sorry to hear about your mum's bone mets and I wish her well. Thank you so much and you are so right!!! What do they know I have read a couple of stories on here with lovely ladies 10+ years and still living with their secondaries, surely its a chronic condition rather than incurable? I asked for my prognosis which I was told 4-5 years and I also have this in a letter now. If a patient asks, why not stay something positive, my Oncologist actual words words was 4 - 5 year but its a crystal ball.....it was like he was just doing his job, however we are humans with feelings. My BC is ER positive.

I really appreciate your reply. Thank you, love and hugs xxxx

[pea]

Hi Louise,

I was DX de novo secondary in May 2018 with mets in my sternum. It’s my 50th birthday next week.  I’m on palbo too but in combo with anastrozole, zoladex and denosumab. The palbo is keeping it under control and my scans show no evidence of active disease. I’m often neutropenic so mainly have two weeks off before embarking on 3 week courses with of palbo. I don’t feel any different when I’m neutropenic. My main side effects are menopause ones caused by the anastrozole and zoladex.
I am replying regarding your post saying you are currently feeling really down. I have noticed I have these feelings for a couple of days in cycles at the end of each three week session of palbo. It feels like PMT used to for me, emotional symptoms wise. I also found lockdown made me feel even more emotional. My family and friends are great support too and it’s so important to have that. I find being honest, to myself and family, about how I’m feeling really helps me acknowledge and move on. I also talk to our local Macmillan Clinical Psychologist, after asking my oncologist for a referral, and I find these monthly sessions really help. Can you get referred to a psychologist?
 I cope better during these “down” times knowing they will abate in a day or two and that it’s probably linked to my meds. It’s also normal to have these thoughts in our situation and, for me, it would be more damaging to bury them. Most of the time I’m living my best life — active and happy! 
I don’t have a prognosis as my oncologist said they don’t have data beyond 5 years or so because trials haven’t been running long enough as we are on newer meds. I’m inspired to hear others in this forum, and also those I know at our local Secondary Breast Cancer group, have been living with secondary bc for longer than 5 years. 
Take care and sending virtual hugs 🤗 

Phoebe x

[4748]

I totally agree.  I have one mets in my T-9.  I have responded well t9 treatment and plan to live a long life.  
I have read of women outliving the 10 year mark.  I encourage you to live in hope.  Live a fulfilled life.

[Secondarysister2]

Hi Loulou,

First off I am so sorry about you're diagnosis, I found this forum to be invaluable when my mum got diagnosed with bone mets Sept last year.... it's a welcoming place and everyone is here to support each other and give advice!

However, after hearing your story, I am angry for you....  I don't see how they can tell you 4-5 years?! They don't know how you will react to treatment! There are ladies on this forum who have been living with the disease for over 10 years!! The statistics are so outdated! Obviously there are no guarantees to live over 10 years, but they sound very pessimistic!

... and literally... what do they know??!!! It seems like your secondary diagnosis was only picked up, because you pushed for blood tests!! The oncologist told you he was surprised ? You will probably surprise them again and outlive their silly statistics! 

What type of breast cancer do you have ? Do your research and be your own advocate!!! If you have any questions about anything, then post on here! 

Sending you lots of virtual hugs and love at this time! X X

[Loulou1007]

Hi All. I was diagnosed with secondary BC in my spine on 17th June 21 (3 lesions). To be honest I didn't have any symptoms I was attending an Oncologist appt first one F2F in a long while and mentioned that I had not had any blood tests, scans since my original BC in 2016. My Oncologist replied that I didn't need any as was fine, I pushed for a blood test to measure CA15-3 markers which came back elevated at 48, was sent for bone scan which discovered a hot spot at top on spin but Radiologist said it wasn't high activity it was medium and probably not cancer, then had an MRI followed by an appt with Oncologist who gave me the bad news and who said he was very surprised with the results! Currently it is only in my spine. I seemed ok to start with but this weekend I have been tearful with no positive thoughts.......I do have a supportive family but I have been so very down this weekend I feel for them. I am 51. I started my treatment plan on FUlvestrant and denosumab injections last Thursday with a Palbociclib tablet once a day for 3 weeks then a week off. Are there any other ladies on the same treatment? My prognosis is 4 - 5 years. Any help or advice would be much appreciated. Louise x 

[4748]

I also want to thank you for your reassuring word.

[artygirl2061]

Hi Julie 

Thank you so much for getting in touch. Your words and the fact you are in your 11th year has really lifted me! 

This forum is wonderful; already it is helping get through these first awful days. 

Love Sharon x

[artygirl2061]

Dear 4748

That is so kind of you. Thank you.

Love Sharon x

[JulieD]

Oh Alison,

I am not surprised you are feeling low and scared. Your Oncs should be ashamed of themselves and need to learn better patient interaction skills.

I have just replied to artygirl and I  will say the same to you. Hold on to hope. I know that must be particularly hard at the moment, especially the way your Oncs have behaved BUT no one can really predict how any individual will respond to treatment or how long we have to live. I had my primary in 1999, had everything thrown at it, in 2010  after many months of pain I  was finally listened to and was found to have bone mets. 

I have had radiotherapy and have been on Femara and 4 weekly infusions of Zometa plus the calcium/vitamin D. I am more easily tired than I  used to be, my pain levels fluctuate but are generally well-controlled, I find standing for any length of time uncomfortable/painful and my mobility is not what it was (I often need to stop for a little rest). However, I  am still here, still living my life, still enjoying myself and mostly doing well. You do get used to a new normal, it takes a little while but you get there

I'm afraid you are not alone with the reaction of others. I  know quite a lot of us have lost contact with people we thought were friends. However, this site is a good place to make new friends, ones who understand.

Best wishes fr the following few appts, I  hope they improve and I  hope you get paid n relief and a good treatment plan,

xx

[4748]

Of course, please do get in touch via email.  Would you like for me to keep you in my prayers?  Also we have a prayer group in our church and I can ask they pray for you too.

[JulieD]

Hi artygirl,

I am sorry you find yourself joining us. It is hard to take it all on board at the start but I  hope you'll see from the forum that there are lots of us living for a good while with secondaries. You will see on this particular thread that I  was posting years ago 😀

I do not have liver involvement but I  do have bone mets. I was dx with bone mets in March 2010 so am in my 11th year!! 😄😁 of secondaries. My mantra has always been hold on to hope and I  hope that by seeing there are people like me on the forums who are years living with mets, that those like you, more newly diagnosed, will get some hope for your own future.

Good luck with treatment when it starts, I  found it a little easier to deal with once I  had a treatment plan and knew there was something being done to help control further spread.

Do keep using the forum it's a great source of information and support. With best wishes JulieD X

[artygirl2061]

BTW amazing news about your remission!! Long may it continue! 
x

[artygirl2061]

Hi 4748

Thank you so much for getting in touch. It has really reassured me. 

You sound like you have really been through it but clearly are very resilient and I am grateful

for your wise words about accepting a secondary diagnosis.

 Thanks, too, for the words about your faith and the great comfort it brings you. Whilst I am not a church going Christian I do believe in a god and my daily prayers which I have always said are, I believe, giving me strength. 

It would be great to keep in touch with you; thanks once again for making contact. 

Sharon x

[artygirl2061]

Hi Daisy

Thank you so much for getting in touch. It has really reassured me.

I am so sorry that you find yourself here and what a terrible shock for you to get a de novo secondary diagnosis; you have done so well to get to this point.

Such good news about your first scan and also that treatments are not giving you too many side effects. No treatment plan for me yet as only diagnosed on Friday.

Very up and down at the moment and told my four daughters yesterday which is possibly the worse thing I have ever had to do. Fortunately I have a very supportive husband and family who are getting me through these first days. 

I will let you know what my treatment plan is; it would be so nice to keep in touch as we have a similar diagnosis.

Thanks, once again, for making contact. 

Sharon x

I

[4748]

I was diagnosed with stage 1 in March 2015 - no lymph’s involved at the age of 45.  In Dec 2019, 3 months before the 5 year, I was diagnosed with stage 4 - mets to vertebrae T-9.  I am now 51 years old.

First of all I am so sorry you are going through this. It was devastating for me, my husband and my children.  The world fell apart.  It took me a good 9 months to accept my diagnosis in the midst of COVID. THERE IS HOPE.

Physical and emotional symptoms:I experienced depression, insomnia as a result of the news.  On top of this I have been left with permanent tinnitus due to treatment.  My thick long hair also suffered.  I had a lot of loss/thinning last summer, this stopped aprox 8 months into treatment with normal loss now and volume coming through again. I also experience dryness especially affecting my intimate area causing cystitis.  Treatment has taken me to a permanent state of neutropenia .I thought I would not be able to live/cope with a secondary cancer, however, I did and I am still doing it.  Do not get me wrong, it is not easy.  Some days are harder than others, yesterday was not a good day with regards to thinking. 
How far have I come: 

Jan 2020 I was given palliative radiotherapy to release spinal stenosis and started on Ibrance, Letrozole in February 2020 with the addition of Denusomab injections every 6 months.  At my 6 month pet scan I was already in complete remission. My last scan March 2021 also showed complete remission.  My next PET will be Sep 2021.  I still work full-time and only a few of my close friends have recently found out I am a stage 4.  
What has helped me moving on: God is good all the time.  He has gone before me and stands behind me in case I fall back.  He has provided me with a husband who loves me and is understanding, with a daughter and a son who also support me.  With friends and Church who love me and support me in prayer and care. With a good medical Oncology team who keep a close watch on me every month. I am learning to live a day at the time.  When I fall I lift up my hands and ask almighty God to pick me up.  When I am weak in spirit I raise up my voice and call out to God to help me.  My prayer is that this treatment will continue keeping me in remission ‘forever’ and that I will seen the goodness of God in the land of the living, that I will grow old with my husband, enjoy my children and grandchild and to continue living a purpose filled life.

You will need time to digest the news. I remember being told by my breast nurse that I was mourning, I ‘mourned’ the loss of my primary cancer.  I lost my primary, I wanted to keep hold of it - I did not want the ‘secondary’ I hated it! It took me a good 9 months to accept, it might take less for you, but you will get there.  If you know the God I am talking about, the great comforter, hold on to Him.  If you do not and want to know about Him please message me privately.  My hope is in Him and I do not know how I would be giving the next step without Him.

[Daisy1257]

Hi Artygirl

I'm sorry to hear of your secondary diagnosis especially as you have been through this before.

Like you I have secondaries in the bones, mainly spine, ribs and pelvis also in the liver. But I was diagnosed straight to secondary. It was a massive shock and completely out of the blue. 

I have been put on ribociclib, letrozole, Denosaumaub and zoladex.  So far tolerating meds really well and little side effects apart from mild flushes. First scan in May showed shrinkage in liver and healing of bone.

Have they told you when you will start treatment? I felt so much better once treatment started. Try and stay positive as lots of treatments available.

Big hug.

X

[artygirl2061]

Hi there 

Don’t know if I am on right chat but just wanted to make contact.

I was diagnosed with breast cancer in 2016 (er+ 3/19 nodes. Pre-adjuvant chemo, lumpectomy, radiotherapy) and found out this afternoon that my cancer has returned in my bones and liver. 

Would be great to hear from  others in my situation  and how you are doing. 

Thank you

Sharon 

[Liz0418]

What a horrible experience for you I know what you mean about the cold way that oncologists can be but you have been treated in a terrible and unprofessional way  I am 3 years in on palbo letrozole and zometa bone strengthener . Initial I was told my secondary lump was scar tissue but after 5 months of asking to be referred again was found to have secondaries In both lungs base of spine and pelvis. Scans 3 to 4 monthly show things stable but do get periods of really bad hip pain affecting mobility. Initially I felt as if I was in a no hope situation and the way it was approached made me feel untreatable unimportant and just another number. No-one should feel like this you will get strength and hope pain relief and once treatment kicks in you will feel more in control Yeah we are not curable but are treatable and are important.xx sending you love and hugs Liz xx

[Jools-50]

Hi there Alison

I'm actually shocked reading how you've been treated, some of those oncologists should not be in the job! They have no idea how well you will respond to treatment, there are ladies on this forum who have been living with secondaries for years. I was diagnosed with spine and hip mets (and possibly lung, still being monitored) slap bang in the middle of treatment for primary BC, mine had actually spread during chemo, however when I started on palbociclib letrozole and denosumab, my first 3 month scan showed healing in the bone and no further spread. Please stay positive, the answers they gave you tells me they haven't a clue! 

Take care

Jools xx

[DiJoy]

Oh my Lord, how awful. I too have extensive mets in my spine, although currently nowhere else. I'm being treated with palbo + letrozole + denosumab. I have also just signed up to the COC protocol (by all means message me privately if you would like more info. on this).

Your oncologists have no right to speak to you in such a way, I'm sorry but they just don't as they have no way of identifying which patients will benefit most from which treatments. To be honest, I haven't asked for a prognosis, as I know that this is primarily dependent on what happens in my spine (Palbo is currently keeping things stable), and I don't think my oncologist would give me one if I did! All she has said is that "We are hoping to keep this cancer at bay for a long time yet." I'll take that for now.

I truly wish you well, and hope that the pain management you are offered gives you some relief. xx

[Jennie60]

OMG Alison Mac, I have just read your post and can't  believe how cold your oncologist is being. I was diagnosed in 2019 with secondary in my liver, lung and lower vertebrae in my back. My oncologist said at the beginning we can treat this for years. I've been on hormone treatment which sorted the lung and back, then iv chemo for 19 weeks  but liver grew again. Now capecitabine which had reduced liver mets. I ask each time a change is made and oncologist always says there are lots of options. He never gives me a time limit on life but encourages me to enjoy it.

I think if I were you I would change oncologist. Positive thinking keeps me going, you need a positive attitude from those who are treating you. 

I really hope things improve for you, so many people on this forum live for years, even when they are told they don't have long. 

Sending you love and good positive vibes. Jen x

[AlisonMac]

Hi I'm 53, been diagnosed bc mets to bones & liver. All found over last 3 weeks. 4 years on from original bc. HER+ Stage 3, right breast mast.+recon. Have had debilitating back pain for last 6 months - Doc eventually referred me for scans. Been non stop hosp appointments and phonecalls (due to Covid lot of info been given to me over the phone) so I only saw my scans yesterday with orthopedic specialist - they want to operate on left femur). Next week 5 sessions of radio to 2 spots (shoulder & hip) started on Let. Pal.+bone strengthening drug to follow week after. Pain has been level 10+ for weeks, they are finally getting a pain specialist from the local hospice to work with me. They've had 3 different oncologists speak to me - I've found them all cold & patronising. Today I was at radio planning & onc kept saying "you are going to die from this" & to majority of my questions "good question but I don't think it's helpful to discuss now". The mets are extensive in my spine, plus skull plus sternum. Told prognosis by oncs "1-2" "3-4" & today "3 months to 10 years". I feel I can't take it anymore. I'm completely shattered. I'm freelance so will prob lose my work. I feel a "number" with these consultants. I'm not an idiot & I don't know why oncs are so cold. Already I've had friends say "I don't know what to say" & then rush off the phone. It's all been so fast. I live alone - keep thinking about a painful death because the pain has been so bad.

Best wishes, Alison

[Timmycat]

Hi Siany66,

Also so very sorry to hear that your sister's markers have gone up. There's new drugs being trailed and since January 2020, I've been on one of them, it's Ribociclib, (Kisqali) I'm taking it along with Letrozole and zometa bone infusions. But I have mets in my spine, ribs, and pelvis, not the organs, so possibly a different drug would be used for bone and organs.

I've been hearing about Capesitabine too, this seems to have positive feedback, so there must be oral chemo out there that your sister would be happier with.

Wishing you all the best and hope all gets sorted out for your sister, sending you both virtual hugs 🤗 xxxx

[Ruby2016]

Dear Siany66,

I am genuinely sorry to hear that your sister’s markers have gone up. I am still on my first line treatment, Palbociclib, so don’t have personal experience of second line treatment. However, I do know from other men and women’s experiences and also what my own oncologist has already mentioned to me, that there are other oral chemo tablets to take. 

For example, there is one called Capecitabine which might be my next line of treatment. I have been reading of several others on this site but can’t recall the names of them so won’t misquote.

Very best wishes to your sister. Also, I am sure it helps her having such a supportive and caring sister.

xxxxxxxxxxxxx

[Siany66]

Hi I have come back to this forum after 7 years of my own diagnosis.

My sister has been diagnosed with stage 4 secondaries in her spine and liver and lungs after her initial primary 10 years ago . She has been stable for two and a half years on oral chemo but now her markers have gone up and she is worried this means hurt bone mets are getting worse !
She is adamant that she doesn’t want to go onto intravenous chemo as she will most certainly loose her hair and it won’t grow back this is so important to her .

I suppose what I’m trying to ask is anyone in same position ? Are there any other options apart from intravenous chemo ?

[DiJoy]

Hi Windflower,

My story is very similar. I'd been to the GP with leg-pain a week or two before my incidence of breathlessness, as I really thought I had a DVT. She did all of the tests (except the one that would have shown this!), and I was sent away and told to take Ibruprofen 😞 Anyhow, I started to get breathless to the point that I relly thought I was having a heart attack and called 111. The rest is history... multiple PEs, caused by spine mets.

I was followed for 10 years post my original diagnosis - Mainly because I was 'young' (40) when first dxd., but the follow-up included local breast exam only. I asked loads of times how that examination would show whether my cancer had progressed, but never really got an answer!

I'm on a few fora like this one now, and a lady on an American-based one I've been chatting to has bone mets, picked up during an appendectomy of all things. The cancer was in her appendix too. Like us, this wouldn't have been picked up without the appendectomy... It does make you wonder doesn't it? However at least we are being treated now I guess...

Stay well xx

[Helen_12]

Hi Ladies , sorry to drop in as I’ve not posted for quite some times ! Just wanted to know if any of you have had any problems claiming pip I’ve had my bone secondaries for a few years and had pip at higher level , now it’s due for renewal and my breast care nurse says my oncologist won’t sanction the ds1500 and it’s stopping ! I really rely on the money as I’m not working ! Nurse says I have to reapply but don’t think I will be eligible for anything ! What are your experiences? Sorry to ask but I’m really stressing and I didn’t know who to turn to Helen x

[windflower]

Hi DiJoy,

When my secondaries were diagnosed it was because an out-of-hours doctor noticed I was very breathless and sent me to A&E.  (I had been going to my GP with sickness and pains for about two weeks).  I was also found to have "a large saddle pulmonary embolism" as well as the peritoneal mets.  I wonder what would have happened if I hadn't phoned 999 as I felt so unwell.  I had to have injections for about 8 months (during chemotherapy) and then was put on Warfarin "for life" as cancer patients are susceptible to blood clots.  This was changed to another blood thinner at the beginning of lockdown because the anti-coagulant clinics were suspended and these don't need continual checks.  I had just assumed that the breathlessness was because I was unwell.  It does make you wonder how people get diagnosed with mets once they have been discharged from follow-up.  I am just eternally grateful to that GP for being concerned and sending me to A&E.

Best wishes to you and everyone else,

Windflower

[paris]

Hi Lesley. I too have bone mets in spine and on palbociclib, denosumab and letrozole. I do get a bit achy now and then but the main thing with me was my neutrophils. They kept going too low so I'm now on 75mg and have a 10 day break between treatments. Its a bit trial and error to start, as everyone tolerates the meds differently. I've been on the treatment for 15 months now and all is stable so far. Long may that continue! Good luck with your treatment xx

[DiJoy]

Hi Lesley,

I was similarly diagnosed with mets. to spine in February last year. I'm on Letrozole, Palbociclib (oral chemo)., and Denosumab, which I'm tolerating fairly well, with minimal side effects at the minute. If yu are on the same oral chemo, they can reduce the dose if you find the side effects difficult, or if your white blood cell count drops too much. I think the worst of these is Letrozole, which is notorious for causing joint stiffness/pain, so I walk several miles a day with my dog, which really helps to combat this. I wish you all the best xx

[DiJoy]

Same here Jools, hoping for many years of 'stability' and 'toleration' xx

[DiJoy]

Same here... Hoping for many hyears of stabiility for us!! xx

[DiJoy]

Thanks Windflower,

Mine was picked up during a scan for shortness of breath for which I was hospitalised last February. I had multiple PEs on my lungs, which frankly I think I was lucky to survive. I was told that these "were likely caused by the cancer in my spine" - Talk about shock! Like you, I had almost forgotten I'd had it in 1995.

However, I've read up since, and it turns out that ER PR+ cancers have a nasty habit of recurring many years post-original diagnosis.

At the minute, I'm stable too, although have just had scans, so now follows an anxious wait. I do get some pain in my back, but this is being managed fairlhy well so far.

Hoping for many more years of 'stability' and I truly wish you the same xx

[Jools-50]

Hi Lesley123 not sure if you are on the same regime as myself I'm on palbociclib , letrozole and denosumab and am tolerating the meds well. My first CT scan last week showed spine and hip cancer stable. Hope this helps

Jools xx

[Lesley123]

Hi I was diagnosed with bone mets in my spine in Dec 2020, thought I had arthritis and it turned out to be Cancer absolutely devastating. My treatment starts this week, Oral Chemo, Densonub and some other drugs, can anyone tell if they have been put on Oral chemo and did they have many side effects. Thanks

[Secondarysister2]

Thank you for replying Windflower and do keep us updated with how you are getting on! 😊 

That is bad that the doctors told you it was immaterial as it is stage 4. If anything, I would think it is more important to know as you have to live with the disease. They should equip you with all the knowledge they have!! I took some hope in that my mums is lobular as it is slower growing (grade2) than other types. Maybe I’m giving myself false hope or false sense of security there, but anything ‘positive’ then I will cling on to it with everything I have!

Take care Windflower! Wishing you all the very best Xxx

[windflower]

Hi Secondarysister2,

I know it might sound dumb, but no-one has ever told me what kind of breast cancer I have.  Originally I was just told it was 2cm and it must have been oestrogen positive because I had Tamoxifen for five years.  I had a lumpectomy (this was to establish whether or not it was cancer).  It was supposed to be "early breast cancer".  I didn't have any CT scans.  I don't know whether they existed then.  I didn't have any further surgery, but had radiotherapy and what they called "mild" chemotherapy, which was F5, E-something and Methotrexate in tablet form.  After the radiotherapy I had Tamoxifen.  I had a bone scan at the time which was fine.  I didn't have any lymph-nodes removed, but those in my neck, under my arm and the scar site were treated with the radiotherapy.  When the cancer "came back" nobody told me what kind it was, just that it was Stage 4.  From what I have gleaned since, I assume it must have been lobular, as it seems to be extremely rare to get mets in the peritoneum.  When I queried the type, I was just told it was immaterial, as it is now Stage 4.  I have Anastrozole so am obviously oestrogen positive.  I also have been on Denosumab for over five years.  I actually was given FEC chemotherapy after my secondary diagnosis although from what I have read, it isn't usual to be given stronger treatments.  I'm very glad I was given it, rather than just hormonals from the outset.

I'm sorry I can't give you any more information.  It's a bit of a puzzle to me too!

You are a wonderful daughter, doing so much research for your mum and supporting her so much.  Hopefully she will continue to do well.

Best wishes

[Secondarysister2]

Hi Windflower,

What type of breast cancer up is yours? I couldn’t help notice you said it was in your peritoneum which I know is a common place for lobular which my mum has.

You offer so much help and inspiration in sharing your story. So thank you!! My mum has her first scans since bone mets diagnosis on Monday and I am extremely anxious. The only thing which calms my spirits is reading other people’s experiences. How resilient you are, how you’ve overcome so much and continue to do so. I honestly think I would have lost my sanity without this thread!! 

Xxx

[windflower]

Hi DiJoy,

I too was originally diagnosed with BC in 1995.  I was discharged after five years and had almost forgotten I ever had it!  But in 2015 I was very poorly and it turned out that I had a blocked bowel caused by secondary breast cancer in my peritoneum.  Shortly afterwards I was diagnosed with multiple bony metastasis in ribs, spine, pelvis, etc, etc.  These must have been there for some time and I hadn't had pain from them.  Anyway, the cancer in my peritoneum seems to have faded into the background and my bone mets have been stable for almost six years now.  I am actually due to have a reversal of the ileostomy I had to have because of the blockage, but this was put on hold for the first lockdown and now I don't suppose I'll get it for some time although I was supposed to have it "in the New Year".  It seems to me from reading the posts in this forum that lots of people are diagnosed with secondaries many, many years after their primaries, so it seems that it can lurk unknown for a long, long time.  I take hope from the fact that as it lay hidden for so long, it may continue to grow very slowly, although that is just an observation I have made as time has gone on.  Survival rates seem to have improved so much since we were first diagnosed with more knowledge and many new treatments.  I wish you all the best and hope that you remain stable.

Windflower