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?
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
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.
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.
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?
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
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????
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
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.
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.
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
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.
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
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...."
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
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.
Please refer to page 2 of below document.
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.
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.
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.
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.
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,
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?
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.
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!
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!)
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
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
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 🤗
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.
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
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
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
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,
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.
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
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.
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.
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.
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.
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.
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
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!
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
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