Thank you so much all for sharing your experiences. Her oncologist doesn't seem to have any advice on the taste change... He seems to be concerned about the results of therapy more pthan anything else... She also prefers soups over anything else, bus she needs to have a richer diet I assume. She doesn't have any soar throat, she says the food tastes bad/bitter. We will see her oncologist tomorrow with new test results, please send us your prayers 🙏
ask the breast cancer nurses, but the liquid food-like milkshakes is a good replacement if someone won't eat-it has all the protein etc that she needs, and it can be taken through a straw if necessary. Hope she feels better soon.
Hello there, it's very difficult when your taste is affected and I feel for your mum.
Has she been told how long this course of treatment will last for? I found taking Zink helped my taste return.
I know it's very difficult for your mum at this stage but as we all know and have seen that we're living a longer with this disease so if she could get her mind into thinking that this is just a stage and the more I can manage to eat now the better in the long term I'll be might help her. It helped me.
I have now been on chemo for almost 3 years.
I make Lots of soups with lots of different veggies etc and save some in the freezer. When I didn't feel like eating much, these soups gave me most things my body needed. The other thing I forced myself to do was have walks long or short depending on what I could do.
Some general thoughts:
Talking to the oncology nurses asking if the treatment can be modified.
CBD oil is said to increase appetite and help when on treatment.
Mistletoe is said to help with chemo side affects as is high dose of vit C.
Wishing you and your mum all the best xxx
Changes to taste are a known side effect of protein kinase inhibitors (the drugs that end with -ciclib).
Is she experiencing a sore mouth, and what are the changes she's experiencing? (i.e. bitter, salty etc.)
The general suggestion is to try different foods to see what tastes OK, but if she has a sore mouth that could indicate mucositis (inflammation of the tissue in the mouth), which might be treatable.
Always worth mentioning to the oncologist, as they should have plenty of experience with this side effect.
My mum has secondary breast cancer with bone met in several areas. She is on Abemaciclib, letrozol, and xgeva, starting in September 2023. The treatment has been effective so far in reducing tumor markers and size of tumors. However, she has been developing a very bad taste in her mouth since she started the treatment. She does not enjoy eating anymore and refuses to eat… she has lost about 7 kg over the past few months and we are so worried that even though her cancer condition is improving she is weakened due to not eating well. I wonder if any of you have had similar experience with the treatments I mentioned above and do you have any recommendation? Thank you very much
Inspirational to hear your story. Can I please ask about your nuclear bone scan. Is this with the NHS. Wondering if I should be asking for one. I have had secondary bone mets since 2020.
Hello Perla. If you are able to make a post in this group (as you have) then you are a member.
Hospitals were required to provide stats on Stage 4 secondary breast cancer from 2013. Too many of them haven’t, and the government have published none of the statistical information they have received so far. There is, therefore, no info on how many there are of us, how we progress or what our longevity might be - all the stats are out of date or guesstimates. New drugs are increasing our longevity, there are many of the cyclic targeted therapy drugs who are 6 - 7 years on and living good (but a different normal) lives. I hope your wife responds well to her first line of treatment.
You must have joined if you have posted. What treatment are you on?
Thank you so much for sharing your message is a great source of confort. I was diagnose with spine mets July 2022. How can I join tis group?
I think it's pretty common for tumour markers to increase when chemo is started, something called "tumour flare".
I would think markers after a few months have passed would be more accurate, and even than, they are very hit and miss as a clinical marker of disease.
Recurrence is never easy to deal with. I was diagnosed in March 2015 with stage 1 at the age of 45. Did it all - surgeries, chemo and radio, never in a million years did I think about recurrence. 4 years and 8 months later I experienced disabling back pain - it was back! Mets in my T9. I am on Letrozole, Ibrance and Denusomab every 6 months. Treatment started working straight away and from the first PET scan after commencing this treatment no metabolic uptake has been seen.
I encourage you and your wife to live a day at a time. Enjoy every moment. I was very close to not walking when my secondary struck. I have decided to live a day at a time by the grace of God. I have now been 2.5 years on this treatment and during this time have enjoyed my 5 year old grandson - expecting another grandson next Feb, I have seen my son get married, I help my daughter out, I have just returned from an 8 day holiday with my husband in Gran Canarias, I help out those that are in more physical need than I am, I ensure I am always grateful to God and to others. Oh, forgot to mention - I work full- time as a medical secretary. I have a great husband by my side. He is my support and for as long as I can I will enjoy every moment possible by his side.
All the very best to you both.
Hi all. My mum tumor marker test results came today after being on hormone therapy for 5 weeks. CEA marker has decreased from 26 to 7, while CA 15-3 has increased from 142 to 191. Has anyone had any experience of increased CA 15-3 while starting Abemaciclib and Letrozole? We will see the oncologist soon but still very worried...
My wife's story was primary dx in August 2015. We both put a recurrence at the back of our minds and lived our lives as normal as you can. After over a year from Nikki reporting to the doctor about he neck being swollen, to finally having a scan and biopsy.
Unfortunately, the biopsy confirmed her BC had returned. Lots of tears. Sad thoughts of us not growing old together 😥.
Anyway, Nikki's treatment begins next week. Told this morning, it will be Abemaciclib, Letrozole, and Denosumab, with zolodex injections, only 43 years of old. Hoping to live a few more years yet, reading some of the positive posts gives us hope.
I'm sure I'll be checking in here regular, as this will be long term treatment.
fist of all, it is really inspiring to read all of your stories. Honestly, spending sometime on this forum everyday has been a tremendous help in the past few weeks to me as we have been faced with a new shocking reality that my mum has bone met now after 23 years of primary cancer. She is 62 and while we all thought she was a cancer survivor, it seems to be back causing met in spine, femur, rib, pelvic, and sternum, also under skin lesions, which are like red lymphs. she is on Abemaciclib, Letrozole, and Denosumab. One oncologist really scared me but I talked to a couple of more and they have been really positive on this treatment. It’s been a month since she started therapy but she still has pain sometimes in her ribs. I wonder how long the med takes to be affective. The under skin lymphs seem to very gradually shrink. Through all of this, they figured out that thyroid also has a tiny tumor and needs to be removed but doctors are still figuring out if they should do the surgery now or after a few months so no to interrupt the therapy…
She will have a tumor marker test in 10 days, they told us scan will be in three months after start of the therapy.
So, again thank you so much for all your positive energy. I check this forum every day now…
I'm glad to hear your doing ok it gives me so much hope, sounds like we will be on the same treatment ish.
Thank you for your suggestions for the Facebook group..I'm trying to keep positive and follow a Healthy diet/ exercise and feeling OK which is hard isn't it.
Thanks for reaching out to me
I was diagnosed with bone mets on my ileum in March 2020. I have been on palbocyclib, anastrazole and Zolendronic Acid infusions since, and am stable and doing well on it. I had a new nodule near my spine earlier this year but had a single blast of radiotherapy for ‘pain management’ which seems to have sorted that. My hips and my pelvis ache all the time, but it is an ache, not a pain. My walking and cycling (I don’t drive) have been reduced to about 2 miles but how much of that was due to being so restricted for 2 years by the pandemic and how much by the cancer I don’t know. And when I do do more thé ache is reduced. So I guess lots of gentle walking and general exercise might help. Though there are women with bone mets who run marathons and cycle hundreds of miles! Hope the treatment works. And I’m on the make 2nds count facebook page, it’s a friendship group and is brilliant for anyone with a new diagnosis (or an older one).
Thank you for such a lovely reply, positive stories are what I need right.. I said to my partner last night, have they got it wrong? I feel so well, it's so surreal at the moment.
How do you find the treatment?
I walk everyday, did 7 miles on Sunday and no twinges. I also eat healthy anyway but will up my game even more so now. Any other tips welcome.
Thank you for taking time to answer and being kind xx
I was diagnosed with bone mets, without any pain, in June 21. I was prescribed palbociclib and letrozole and have monthly injections of Zoladex. The bone mets were discovered as I found a tiny lump in my mastectomy breast. I was devastated at the time and my emotions were all over the place.
I am pleased to report that 15 months on, I am still on the same treatment regime. The bones have healed and the breast lump is not able to be seen on the CT scan. Long may the medication regime last...
Life is back to a new type of normal. I talk to my oncologist on the phone every 2 months. Occasionally, I get hit with the enormity of it all but I am living well. I exercise every day and eat a really healthy diet.
I've posted on here whilst waiting for bone and ct scans. Confirmed pelvic mets on Friday! Would like to speak to anyone who has had this diagnosis?
I'm 38, not really in pain at the min and treatment of some tablets and injections start the week after next.
Any advice appreciated
All breast cancers can metastasize. This will have happened before the tumour was removed. The long periods that some people experience between primary and secondary diagnosis can be attributed to the metastatic cells being dormant, then waking up and dividing. Also in the case or HR+ cancers, being on tamoxifen or an AI for 5 to 10 years could also keep it at bay, until you finish taking them, or the cells manage to grow anyway.
Reading people's experiences it seems mets can develop a long time after the primary cause is removed and treated. How soon do some people notice odd pains that turn to to be mets. Is it all types of BC that can result in mets, or is HR + or neg any more susceptible than O and P + or neg? It all seems so random!
Thanks. Results NEADS. So thankful to God
My Pet scan showed no metabolic uptake NEADs. Thankful to God
Hopefully the new drug keeps it under control for a long time ❤️ x
I was originally diagnosed in 2015 with stage 3. I had chemotherapy (6 cycles 3xfec and 3 x taxoter.) I then had a mastectomy followed by 15 rounds of radio therapy. I was out on tamoxifen.
April 2019 I was diagnosed with stage 4 with bone and liver mets. Bone mets are all over, hip pelvis area are the worst. I was given chemotherapy (6 rounds taxotere) and every 3 weeks I got herceptin, purjeta and my bone strengthen er zomita. I also started letrazole.
July 2022 I was told my treatment was no longer working and the cancer was spreading. I was taken off all treatment and I now get kadcyla every 3 weeks. It has got the cancer under control at the moment.
when I was first diagnosed I did get doxytacyl over 6 months. it worked well on the cancer. I was then getting herceptin and perjeta every 3 weeks and taking letrazole. my checkups were a good, cancer under control. my last check up was April and all was good. in June I started to get pain in my hip, it was the same pain I had in the left hip when I was diagnosed in 2019 so insisted I got a scan. it was just as well cause that's how I found out the treatment was no longer working, my next clinic was 27th October!!
I was told to stop the letrazole and I am now on kadcyla. I had my first one on Friday last week, so far no side effects.
I hope all goes well for you.
Hi I’m only 40 when diagnosed with breast , liver , lungs and bone and been stable on tablets only since beginning.
I feel ok most days , I feel psychologically drained worse than the cancer most xxx
Just to say I have bone mets and raised calcium levels rather than low calcium can be an indicator because the mets leach calcium into the blood stream. Of course I am not medically qualified but I know this from personal experience as raised calcium can make you feel ill. I have spinal mets and they caused really severe pain. At that time (three years ago) I had a CT which showed a lesion on my pelvis so I guess CT can show some bone mets. When I was diagnosed with primary cancer I was convinced every ache and pain was the sign of secondaries and I had a nuclear bone scan which showed only a bit of wear and tear. There are a lot of treatments for secondary cancer these days which do not involve infused chemotherapy and their purpose is to slow the progress of the cancer, which is not the same as palliative care. It must be a horrible time for you and I hope that it all turns out well for you and you can get on with your life xx
I was interested to read your post, I was diagnosed with bone mets and liver mets October 21 I’ve had taxol chemo which helped keep it stable for 6 months. I’m now taking g letrozole but nervous as just a tablet.
The reason I was interested in your post was you mentioned you had liver and bone mets since 2019……may I ask what treatment you have had in this time and what treatment you are currently on. It gives me hope that you have had mets for 3 years. I am 52 and find this to be hard to deal with.
@4748 oh that is such wonderful news! I'm thrilled to hear you had such positive results!
Results could not have been better. No evidence of active disease. Such a relief and joy.
I pray all will be good for you too and that scan results will also be good.
Enjoy life. Enjoy your child. Enjoy every moment.
@4748 thank you for your reply and I really hope your results meeting went well today X.
I think when I go for my scan on Sunday I'll mention the specific pain points I have to the radiologist and will ask them what they think in terms of likelihood of any mets being picked up. Then I can follow up with my consultant and/or breast care nurse if we should get an urgent MRI arranged or something.
Since Tuesday I have managed to pull myself together at least a little bit and have started to have the horrible conversations with my husband about 'life' admin stuff. I've found myself taking more pleasure in some of the smaller things in life but have had a setback tonight as my 5 year old was quizzing me about when I'm going to be better. That was a huge gut punch to me 😢.
I know that the above sounds very negative of me given that I've not had any further results yet but as a lot of people on here say, you tend to know your own body. That said, I would obviously love to be proved wrong and just happen to have developed osteoporosis or arthritis early or something! However it just feels increasingly unlikely.
Hi KChest. In my case CT scan did not show my mets in T9, it was the MRI that indicated it and the Pet scan. I was stage 1 for 4 years 8 months. When diagnosed with stage 4 I thought my life would be over soon - it is 2.5 years since my secondary diagnosis, and, asides from symptoms from medications I live a full life at 53 years old. I will send you a photo of me at my son’s wedding in a few weeks ago.
I do struggle with some private issues that have been caused by the depletion of oestrogen. I suffer with tinnitus now and from a painful right upper limb which I am praying will not be mets.
Presently I am in the Uk. I had my Pet scan done Wednesday and I am going to the Royal Marsden for results today. Today is a difficult day for me emotionally - the uncertainty, but it has to be done. How do you do this? I am asked by those that know me, I cannot do much, it is my faith in Jesus Christ, knowing that being stage 4 is not the only condition that labels me terminal but the fact that the human being is terminal from the day we are born. It is knowing that my spirit is not sickened, my spirit is eternal and that one day it will be my spirit that will live forever in the presence of God Jesus Christ in whom I place my trust as Lord and Saviour. Of course I want to live and of course I want to see my second grandchild born next February. I want to see both my grandchildren and more to come grow up into men and women after God’s heart. I want to live a fulfilled life beside my husband and enjoy the life God has given us.
I'm new on this thread but looking for a bit of advice. I was diagnosed with primary breast cancer in June this year and so far my only treatment/follow up after diagnosis was mastectomy with immediate recon which took place in August.
I had a meeting with the consultant who gave me my diagnosis this week and he informed me that one of the five lymph nodes removed during the surgery had cancer present so I'm going to be sent for lymph node clearance and a full body scan now.
The thing is, I've been experiencing some upper back discomfort that I'd put down to really poor posture for a little while and this morning I woke up with pain in my hip/glute area too so I'm 99.9% convinced now that actually I have bone Mets. I have a couple of questions I wonder if anyone here might be able to answer?
Will the CT scan I'm due to have on Sunday be able to pick this up or will I need an MRI?
I had some blood results from a general health check in April that indicated slightly low blood calcium levels. Would that be consistent with bone mets (I'd mentioned this result to my consultant at my diagnosis but he didn't do anything with that info).
If there are bone mets am I likely to still have the lymph node clearance or would treatment just move to chemo/palliative?
I'm holding it together just now but I am petrified inside. I'm only 39 and have a 5 year old son who I desperately want to be here for
Hi Stargate re your message. Yes I was taking a Chemo tablet but it hasn’t worked so jus have the injection in my arm for the bones, results from last MRI were not good more Tumoursin my Thorax, Oncologist has recommended Chemo on the drip and has given me 6 weeks to come to a decision😩 can’t make up my mind I am 77 now and feel that my body won’t take it, anyway I just keep going like we all do on here. Good luck
Hello Lesley. I’m sorry to hear your news. Hope the tablet contains your cancer. Like you I’m hoping they find something for the young people getting it. It’s heartbreaking when someone young, especially if they have a you d family, is diagnosed with this. Bad enough for all of us, but we older ones tend to have financial stability and no responsibilities, which I think makes it a bit easier.
I’ve been following (loosely) the development of ErSo, a drug they think might actually kill the cancer for Sbc and ovarian cancers. Very early stages, human trials may take place next year but it gives hope. Being developed in America, a facebook group are pursuing and following developments and pushing for early testing/approval there. Can’t find anything on it in the U.K.
Too late for me by the time trials have taken place and NICE approval is given, I’m 71, Sbc with bone mets, and on palbocyclib, anastrazole and Zolendronic Acid. It has worked for the last 2 and a half years for me, but new small nodule near my spine on the last CT. Had a single blast of radiotherapy the beginning of June, as pain management which has worked wonders, hoping it may have blasted the nodule too!! Though doing that was never mentioned with the radiotherapy. 🤞crossed for you with the tablet, look after yourself.
Sorry to hear your news, is the tablet the chemo tablet you are going to be taking? My mum has an appointment with the oncologist Friday to have a discussion. She doesn't want to have chemo either the IV one .. hoping they will give some kind of treatments. How are you doing? x
Trishb50 , welcome, hopefully you will find alot of support here on the forum .
Hi so sorry to hear about your Mum. I have just been to the hospital for the results of the MRI last Monday I have bone cancer from the breast cancer I had 5 years ago, the results were awful the tumours have got worse and I have more in the middle of the spine, been on Paplciblib , Fulveresant and injection in my arm every month but now the treat ment isn’t working my consultant is marvelous and she held my hand and said we will put you on another treatment she said I could have Chemotheraphy but I don,’t want it so I am going with the tablet apparently it stops the cancer from getting any further give it another go I am 77 years old and feel so sorry for the young people getting this b——-d desease. Hope you Mum will be ok tell her to keep fighting.Pam.x
I’m 69 yrs and have recently been diagnosed with secondary Brest lung cancer (primary 6.5 yrs ago) HER2 positive
Had my third Phesgo injection yesterday and started third month of Exemestane pill. Scan booked for July and results August. Oncologist seems confident that if these drugs aren’t working he has other options to offer me. I’ve lost over 1.5 stone since being diagnosed. My goal is to be on planet earth for many more years! 😘🤗
That’s appalling. I had a similar experience at a small cancer unit in December 2019, but was transferred to The Christie when my gloomy consultant felt he couldn’t do any more. What a difference. By then it was Stage 4 incurable with bone mets, they could manage it, the medication would stop working at some point but there were other options when it did. I listed my previous experience with dates, appointments stretched to the absolute limit and beyond, overcrowded scruffy waiting rooms, etc. to my MP, and she took it to the Minister for Health. We need a properly funded NHS where staff have the time and energy to support us. I hope your change of hospital is as beneficial as mine has been.
Over 2 years on I am still on targeted therapy (Palbocyclib and Anastrozole). The Palbocyclib was reduced as I had a period of being utterly exhausted, Letrozole was changed to anastrazole after a bad rash, my bone strengthening injection was changed to a Zolendronic Acid infusion after a small local rash. In April this year my CT showed something near my spine, so I have had a detailed MRI and it is a small probably cancerous nodule. The other mets are still stable, so for the time being I am staying on the targeted therapy, but it will be reviewed at my next scan.
I send an e mail to the Christie MacMillian and consultants secretary a week before my consultation, asking questions and telling them how I am generally, and soreness or pain, any side effects (very very few). The consultant has my e mail to refer to, as do I, in case we miss anything. It works well for me, it’s my way of keeping some control as I have brain fog. I am still having telephone consultations at present. I was offered a single blast of radiotherapy as pain control in response to my last email/the new nodule, had a consultation on the Tuesday, a CT and check for tattoos to use to line up on the Thursday, and the radiotherapy the following Tuesday. They said it wouldn’t work, if it did, for 2 weeks - I woke the next morning and my body straightened up for the first time in months. 2 weeks later the soreness has almost all gone - almost. I feel amazing. It can last up to a year, I will just enjoy the huge improvement it has made for as long as it does.
There are options, don’t let anyone tell you and your Mum otherwise. Wishing for the best outcome for her (and you).
thank you for your message it means a lot. That’s such positive news that you are four years on from secondaries in same places as my mum .. that’s really lifted my spirits and so glad you have had good scan results.. it’s all so scary and it’s not even happening to me . I want to be strong for my mum and support her just so scared of loosing her. I have booked a weekend away every month till end of year to all the places she likes to go so she has things to look forward too .. I have made notes of the treatments your on so I can ask questions when we next see someone .. I really appreciate you responding and telling me about yourself . I saw my mum earlier today and she said we should talk about end of life care after yesterday and I just went to pieces! But tomorrow I am going to Go and see her and show her the positive messages I have got and try and get her back in fight mode xx
Hi Gina G
thank you for responding it means a lot and thank you for the name of that bone strengthening injection. I will write it down and ask about it when we next get to see somebody. I feel a bit more uplifted after reading the replies, I haven’t been able to go to work today as was so upset after yesterday! Spent most of the day crying! Xx
thank you for responding it means a lot, they said they will be in contact with a date over next few weeks for MRI scan to see best place in spine to do biopsie then week later do the biopsie then will refer her to Weston Park hospital (in Sheffield where we live) and that she probably won’t go back to The Hallamshire hospital again. Where we were yesterday .. I just felt totally down after yesterday as reading all the posts on this site , I know everyone is different and will respond differently but I read there are lots of treatments that can be tried but they just didn’t say that .. and that’s what’s been keeping me going that it’s not an immediate death sentence .. and just hoping I have my mum around for a bit longer ., I keep praying for two years! Obviously I want her around forever but that’s not realistic .. but I wan to make memories and make sure she is living her best life now while she can xx
Hi stargate totally agree your mum has been treated so badly I'm 4 years on with secondaries in both lungs pelvis and base of spine on letrosole and palbociclib plus bone strengthener zometa . You can phone bcn on this forum for support. That nurse was so wrong about bone strengthener I was told all sorts of conflicting things . I have only had ct scans for mets and all stable. As the others said ask for second opinion if you aren't happy . I'm 67 and lots of people on here living so much longer with sbc. I have been told when palbo stops working other options available orally or monthly injection. The treatment is nothing as bad as chemo was for primary in respect of side effects. Hope you get some decent support and treatment an for your mum. Sending love and positive thoughts Liz x
I cannot believe you were treated like this and yes, I believe there are treatments for you mother. I found the comments from the nurse particularly concerning and suggest she reads up on latest research and what is currently available. Please push for why they are denying your mother biphosphonate (bone strengthing injections). This will help with the pain. Yes they are given for cancers which are at risk of spreading to the bone.
So, please bang a few heads together (metaphorically). Because you and your mum have come this far in her journey and chemo/ anti cancer meds have adapted and progressed as people now live longer with their cancer.
That’s awful that the oncologist and nurse made you and your Mum feel like that . Have they given you a plan for a way forward ? There must be some treatment they can offer ?
Obviously everyone’s circumstances are very different but we have a community champion who has lived for 16 years with bone and lung mets . If you are not happy with their approach ask for a second opinion .
just looking for some advise / positivity.
My mum whose 73 has been diagnosed with secondary breast cancer, 8 years after primary. She’s been in a lot of pain since January and lost two stone .. loads of tests and finally chest X-ray which picked up tumour in lung, in the lung lining and the chest wall and rib. We went to the hospital yesterday to get results of her bone scans etc and they said there are also mets in spine and pelvis. They want to do a biopsy in her back and MRI scan to see if it’s acting the same as primary . The consultant seemed very doom and gloom and said we will do all we can but it’s widespread. We were then left with the macmillan nurse and she said you know it can’t be cured which we knew anyway. I then asked about treatment and my mums on letrozole last 8 years but obviously it’s not worked. My mum said she won’t have chemo again and I said to the nurse could she explain to my mum that the chemo wouldn’t be like the first time and aggressive treatment and it’s more about being able to keep her as well as they can for as long as they can etc and also tablet form and won’t loose hair etc. and the nurse said she didn’t think my mum would be offered chemo then I said what about the bone mets and I had read people having some kind of bone strengthening treatments and she said they don’t do that for breast cancer I said I have read all the online forums and people are on those treatments .. my mum left the room with the mindset it’s game over and no treatment is going to be offered and that she hasn’t much time left .. I am frozen with fear as I can’t bear the thought of loosing my mum .. I just wondered if there is anyone out there of the same age as my mum that can offer me any hope of my mum being round a while yet and what treatment could be offered and why chemo won’t be an option? Thank you all xx
Spoke the oncologist a week before the scan on 29April and that seemed to trigger two more appointments- one with the breast unit at the end of may and another with the oncologist on7 June-not sure if this usual or because I mentioned the pain, and I hadn’t had the radiotherapy, but until that appt I had heard nothing since Jan!