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Bone mets - please join in

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Mindy63
Member

Re: Bone mets - please join in

I’d like to join this thread. Struggling a wee bit navigating the thread though. I have 2 confirmed mets in skull and spine but still don’t have any treatment plan. The mets have been there since July but it has been slow getting scan and then bone biopsy. Currently on letrosole only but I’ve got new pain in cervical spine so feel things are progressing. I’m seeing oncologist on Thursday and hope they have a treatment plan established. My worry is that the CT scan I had several weeks ago is already out of date.  Hoping things don’t escalate too quickly but feeling quite fearful due to new pain in cervical spine.

worriednow
Member

Re: Bone mets - please join in

Hello lovely just came across bone mets bec iam diagnosed with it . How are you doing now .what medications are you now on. Hope you don’t mind me asking 

Jools-50
Member

Re: Bone mets - please join in

Hi Loulou, Im sorry to read your post... This is such a coincidence, I remembered reading a post from Gillyflower that said she had a false start on meds similar to what you were on, then started on Cape and was doing well.. I couldn't find it , only to see it in the link Jill1998 posted! 

Hoping the posts on that thread help to lift you.. take care

Jools xx

Jill1998
Community Champion

Re: Bone mets - please join in

So sorry you didn’t get better news -have look at this thread - may be helpful x

https://forum.breastcancernow.org/t5/Living-with-secondary-breast/Capecitabine-desperately-need-feed...

Loulou1007
Member

Re: Bone mets - please join in

Hi Ladies

Thank you for your wishes but unfortunately it was bad news. An extra met on spine and they noticed a very small spot on my liver and possibly very small nodules in my lungs, when Oncologist looked at the CT scan he couldn't see the lung nodules but Radiologist said there is something. I was hopeful for good news and that treatment of Faslodex and Palbiciclb (only been taking since July) would have helped but is seems it has done nothing to regain control. He is now suggesting Capecitabine chemo tablet once he has discussed at their MD meeting on Tuesday. Why did the first treatment not work they were 98% sure it would! Will the Capecitabine work. This has made me an utter wreck,  my life has been taken over by this disease, I don't know what to think anymore. Does anyone have anything similar and how has Capecitabine help their regain control of cancer. Thank you

catokitty
Member

Re: Bone mets - please join in

Good luck for today.   I was diagnosed with spinal mets in May 2019 and have been stable on treatment since then.   I have gradually learned to live with it and my anxiety levels have gone down accordingly.  All the best xx

Jill1998
Community Champion

Re: Bone mets - please join in

Good luck Loulou ❤️

Loulou1007
Member

Re: Bone mets - please join in

Hi Everyone

Today I have an Oncologist appointment to get the results of my first 3 monthly MRI and CT scans following my secondary diagnosis in June with spine mets. I was expecting to feel anxious however, I feel sick, tearful, scared, concerned, probabaly the normal. My last F2F appt was when I received the devestating news my cancer had return. I cant wait for today to be over. I am unsre how I will cope if this has spread further. 

Lou x

Mindy63
Member

Re: Bone mets - please join in

Thanks for reply. I’ve had bone scan and despite being promised results I have not been contacted. CT scan in 3 weeks. So it seems I will be waiting well over a month to get any sort of results. Is this a normal wait time?

artygirl2061
Member

Re: Bone mets - please join in

Hi Louise 

Thanks so much for your reply. It has calmed my nerves a bit! 

Likewise I will be tested again after my second cycle. 

Fingers crossed for both of us!

Love Sharon xx

 

Loulou1007
Member

Re: Bone mets - please join in

Hi Sharon. 

I have bone mets and am also on Palbociblib & Fulvestrant. was diagnosed in June 21 with secondaries. My tumour marker CA15-3 were elevated before treatment, after I started treatment they went higher my Oncologist said when the treatment attacks the cancer cells the cells let off an antigen which can increase tumour markers to start with before they then should hopefully start coming down. I am due a 3rd cycle at the end of this month when I will have a  CA15-3 blood test and so hoping they have come down. Hopefully this helps a tiny bit.

Louise xxx

artygirl2061
Member

Re: Bone mets - please join in

Hi everyone 

Hope you are all doing ok on your treatments. 

Maire - sorry nobody has got back to you you and not sure I can help you either but really hope since you posted that you have some answers from you hospital team. 

Does anyone have experience of tumour markers?  I have quite extensive bone mets and possibly liver mets too ( still to be resolved). I have completed 1 cycle of Palbocliclib and Fulverstrant and my tumour marker results are mixed. Two have gone down by 30% but the CA-15-3 has gone up quite a lot. Seeing my oncologist on the 13th when I can chat to her about this but in the meantime, has anyone else had a similar experience? 

Thanks very much. 
Sharon xx 

Mindy63
Member

Re: Bone mets - please join in

Folks, I have a lump on my forehead which is almost certainly a bone metastasis. X Ray is showing a highly suspicious lesion.  It has developed into a lump from nothing in only about 5 weeks. My husband is inconsolable and I am v frightened. Can anyone give me any indication of average prognosis and any hope out there?

kltg
Member

Re: Bone mets - please join in

Hi, I am at present on a targeted therapy and oestrogen inhibitor which my oncologist at Royal Marsden has said should stave off the cancer for a few years. I have had secondary BC for two years and did take Verzenious and Letrozole. He has said there is a triple chemo tablet now on the market and you don't loose your hair. That may be an option for me later down the line. Might be worth asking about it. Good luck x

jane

kltg
Member

Re: Bone mets - please join in

Hi. I have had secondary breast cancer for two years now. This appeared as a large lump to left of my sternum. I have been on Verzenious and Letrozole for two years. This shrunk the tumour but there was still activity in the sternum. I had cyber radiation which cleared the activity in the bone.   I have had other nodes appear in chest and have changed my targeted treatment with IM injections of Fulvestrant. Perhaps Cyber alongside medication might help????

artygirl2061
Member

Re: Bone mets - please join in

Hi Louise

Thanks for getting in touch. Yes, trying not to overdo it this first cycle and resting lots. 

Hubby doing good room service!

Lots of love, Sharon xx

 

artygirl2061
Member

Re: Bone mets - please join in

Hi there 

Three years in - that is fantastic! So glad you’re recent scan was stable too. 

Yes, I am taking my Palbo at night and drinking      lots.

 

Thanks for getting in touch. 

Sharon xx

 

Loulou1007
Member

Re: Bone mets - please join in

Hi Sharon

Glad to hear things are settling with the treatment, I am nearly 2 months since diagnosis and on Fulvestrant and Palbo I have had the initial fulvestrant every two weeks for the first month/cycle and for me it is now every month. I have hot flushes overnight and either the palbo or fulvestrant sometimes wipes me out, for instance, Tuesday just gone I had an x-ray appt ( for a suspected broken foot, luckily it was not broken), I then drove to my cancer centre where my oncologist and secretary are based, around a 35 minute drive, dropped off a claim form for a pension I am trying to claim the funds early due to ill health (i'm 51) then drove back another 35 minutes. when I got home I felt obsoletely shattered so much so that I had to lay down and I slept for a few hours, following an early night too the following day I felt as right as rain 🙂

Look after yourself and huge hugs to everyone.

Louise xx

Liz0418
Member

Re: Bone mets - please join in

Hi Sharon I'm on palbociclib for 3 plus years initially I felt nauseated and had diarrhoea but started lansoprazole 15 mgs got from oncology unit or g.p which I take daily and this helped also take my palbo at night and drink extra water x . Hope things settle x  sending love and positive vibes. Just had scan results all stable Liz xx

artygirl2061
Member

Re: Bone mets - please join in

Hi there 

Thanks so much for your reply. This forum is so helpful!

The side effects from Fulverstrant seem to have settled down apart from some hot flushes. Feeling a bit nauseous from the Palbo tabs but taking lots of anti sickness. 

Only a month into my diagnosis I think it is the emotional impact that is the hardest to manage but I am having less dark moments now I have the reassurance of treatment. 

Sharon xx

 

 

lynnecarr
Member

Re: Bone mets - please join in

Hi Sharon I too was diagnosed in 2016 had lumpectomy chemo and radiotherapy plus tamoxifen got to exactly 5 years when bone scan revealed lesion on my sternum had radiotherapy then abemaciclib, fulvestrant and denosumab injections. Some days not bad others completely overwhelmed

 Main side effect diarrhoea and stomach cramps. It was such a shock and felt mecompletely devastated but I am determined to enjoy my life as best I can and make memories with my family. Waiting for scan to see how the treatment is doing. Sending lots of love it is nice to not feel alone

lovemama
Member

Re: Tumour Markers

Dear Loulou1007,

No need to apologize. I fully understand. I know how important is each treatment to us. (I am triple positive stage 4).

ps. 2 years ago after my cycle 6 of Taxol, I felt numbness in my fingers then my onco. suggested a dose reduction of 20%. I reacted so badly. I shouted "No...I want 100%.... I want to change another oncologist...."

  

 

Loulou1007
Member

Re: Tumour Markers

Thank you for your reply. and links. Following my treatment yesterday I was able to ask the question and I have two injections of 250mg in the top on each bum cheek a total of 500mg, my mistake I think I got confused with  the Palbociclib tablet which is 125mg. Apologies. Louise x

lovemama
Member

Re: Tumour Markers

Hi Loulou1007,

Are you sure your dose is 125mg x 2 and not 250mg x 2 ?🙂

I am getting my SBC treatment in BC, Canada.

The dosage guideline is 500mg for 1 dose but the administration guideline in Canada  is 

two 250 mg injections, one into each buttock.

Please refer to page 5 of below document.

http://www.bccancer.bc.ca/drug-database-site/Drug%20Index/Fulvestrant_Monograph.pdf

Please refer to page 2 of below document.

http://www.bccancer.bc.ca/chemotherapy-protocols-site/Documents/Breast/UBRAVPBFLV_Protocol.pdf

artygirl2061
Member

Re: Bone mets - please join in

Hi there 

Thank you for this. 

Sharon x

artygirl2061
Member

Re: Bone mets - please join in

Hi there 

Thank you for this. I shall definitely look

into

it. 

Many thanks

Sharon 

teresaa71
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Tumour Markers

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

Loulou1007
Member

Tumour Markers

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

I also want to thank you for your reassuring word.

artygirl2061
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

Dear 4748

That is so kind of you. Thank you.

Love Sharon x

JulieD
Community Champion

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Community Champion

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

artygirl2061
Member

Re: Bone mets - please join in

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