Morning ladies, lovely day here in Manchester!
Just want to welcome the newbies, sorry you’ve had to join us though, the boney thread has always tended to be quite active but went quite but thanks to F/F it’s up and running again! I’ve been on Letrozole for getting on for 4 years now but I take the branded Femara, I’ve found letrozole to be very doable, you do get achey join and I’ve finally given in and also had to go on a mild antidepressant as it threw me head on into menopause and my head was all over the place. On the whole I feel good and am still working (only 2 days now) and am very grateful to happy “healthy” and still enjoying life!
hugs to all Janette xx
I wondered how you were getting on with the abemaciclib as my Mum picked hers up today and is combining with Letrosole. She's a bit nervous about all the possible side effects and I wondered how you were doing one week on. The nurse led clinic couldn't offer much insight as it's so new but am hearing good things so just wondered if you had an early views.
Hi Mel and Pea! Sounds like you two are in similar situations! It always amazes me where the Mets show up at! Mine is the lungs and originally they said lymph nodes in the chest. Haven't heard a word about the lymph nodes in years. Scans and results the end of this month. We shall see how things are then.
Have a good weekend! FF
Raitch, The hormonal like letrozole are known for aching joints! The hormonal are wiping out your estrogan which makes you like an elderly lady with little hormones. I had had a bad reaction to gemcitibine while away camping. I couldn't even dress myself bc I couldn't breathe. I came home and had to stop treatment and go on O2. They gave me about a month off treatment. I then started a combo of letrozole/pablociclib. My knees started to kill me within a couple days. I ended up on crutches within 2 weeks. I thought I had done something to them. I didn't realize it was the medicine. I will say my knees are worn out and do need replaced according to the MRI I had, but I never had pain like this. I had steroid injections and the gel injections. No relief! After almost 2 years on this combo it quit working. Within one month my knees quit hurting..They do have the normal hurt when going up and down steps, but they aren't screaming at me!
Life is better!
Some of the ladies say that different brands of letrozole make a difference. I don't know if you can get get a different brand to try. I live in the USA and here I got what the pharmacy had. Never got to choose different brands.
Have a good weekend! FF
I’m in the same boat as you- was dx stage 4 BC with bone met in sternum last year. I had FEC-T followed by lumpectomy and node clearance and then radiotherapy. I’m now on anastrozole, zoladex and denosumab and they are talking about starting me on palbo. Overall feeling well and getting fitter and stronger each week. How are you getting on? Phoebe xxx
I had that combo of chemo back in 2013 when it was assumed I was HER2+(long story).
I found the docetaxel bearable, after some severe nerve pain after the first infusion. After that I got the ‘usual’ side effects such as hair loss, tiredness etc. I took the steroids as prescribed and did not suffer any nausea which I was dreading as FECchemo made me feel so nauseous. I did get mouth ulcers but I found by sucking ice cubes during the infusion it stopped them on subsequent cycles. I had learnt this trick from the forum and when it was explained that it was like the cold cap that it freezes the blood vessels I worked out why it worked! I used to freeze a diluted cordial drink into ice cube trays and then put them in a flask to keep cold whilst on the ward. During the infusion I just
opped them in one by one to keep my mouth cold. I found taxotere so much more doable than FEC. The other way to check out SEs is to check the main part of the forum where lots of primary BC ladies will be on it (there’s not so many of us secondary ladies having it at present). I learnt all the top tips about what to expect by checking out the tax/docetaxel threads.
The only difference is, if I can remember correctly, for the first infusion of all of them they tend to give it over 2 session one day after the other so they can assess if you hace any reaction to any of the 3 drugs. You also have to be observed for several hours after the Herceptin infusion to make sure you have no reaction. This is tedious rather than difficult as you will just want to go home!
once you are on the H and P combo it is very straight forward and no noticeable SEs from what I can remember.
I hope that helps and I will also try and find the old thread that was called per Pertuzamab/Perjeta which might be worth posting on or at least reading for some insights.
Good luck and although it’s a pain losing you hair again (I know, I’ve had this twice as well) you are at least getting on with your treatment and dealing with the pesky mets!
They found Mets in hip couple of weeks after my primary diagnosis in late 2015 and I had radiotherapy (Cyberknife). (Also had LD flap and radiotherapy after the chemo). Been on the HerPerZom combo since March 2016. Interesting you mention knees. Mine often feel like they are going to give way but my consultant keeps telling me it's because I'm unfit. (Whilst I've no gym membership I think my fitness level was ok before all this started!) Apparently the joint aches are all unrelated to the treatment or are 'just' the menopause. I find it hard to know what causes different symptoms and feel it is all a bit random.
Mel - I suspect you've come to the right place for buddies!
Hi, can I join this thread? I was dx stage 4 BC with met in sternum in 2018. Posted to this forum several times but haven't made any buddy yet 8-) xxxMelMel
Welcome Raitch! Don't be shy keep joining in! Thanks for reaching out! How long have you had your mets? I work PT, it helps me stay sane! Letrozole was a tough treatment for me. It killed my knees! I hope it's minded to you!
I've been a bit of lurker over the last couple of years and haven't looked for a while (and have never posted!) but just wanted to say hi and reassure you that docetaxel is manageable. I had 6 sessions of that (after a couple of Fecs first before they realised it had spread to my bone). I lost my hair but it came back! I've been on herceptin, perjeta, zometa for nearly three years now (and letrozole after a year or so on tamoxifen). I have the usual itching, aches, pains and moans but I am still here (and working) so don't let the docetaxel get you down. Any advice or help you need then I believe you can private message on here (although I have no idea how!). Don't take the steroids too late in the day or you will never sleep.
Whilst I am here must just say thanks to all of you who post on this thread. I sometimes forget just how much you have all done for me. I really wouldn't have got through this without all your lovely positive posts. I am just not much of a joiner but I have been so grateful that you all post. Now that I have galvanised myself to register you'll probably wish I hadn't bothered.
Welcome to the forum a place no one wants to be.
I just want to send some encouragement. I was diagnosed nearly 10 years firstly with bone mets and breast cancer at same time. Had various treatments over the years . Unfortunately it spread to my liver 2 years ago now. I did manage to carry on working for about 6 years until I reached retirement age.
I can understand how you feel as I felt exactly the same. By chance I discovered this forum which has been supportive to me.
Feel free to ask any questions .
Elliejane, I haven't had taxotere so really can't comment on it. I hope your treatment plan is kind to you. I'm not HER2 + so have no experience with herceptin either. I hear it does well for most. Best widgets! FF
Jayne67 thank you so much for replying to my post, I really hope you have good news after your bone scan please let us know how you get on
Nicky08 thanks for your response. its so encouraging to hear someone who has lived with this for so long, it gives me hope that I too could still be here in 10 years. I have a son aged 12 so it would be so nice to see him grow into a young man.
thank you so much for your support it really does make a difference when life seems so uncertain at the moment.
Hi had appointment with oncologist today and my bone mets are in my skull, ribs, spine, arms and hips as well as my liver. They are going to start me on 6 sessions of docetaxel (taxotere) and also trastuzumab (herceptin) and also pertuzumab (perjeta). Said the herceptin and perjeta will carry on after the chemo finishes. Also have to take calcium tablets to strengthen bones.
im going to lose my hair again which I'm gutted about but I'm sure I will get used to it again.
i had 3 sessions of taxotere last time and remember how awful it was.
looking forward to getting advice from you guys xx
I just wanted to add a message of support as I know what I was like when I was waiting to find out my treatment plan for secondaries, I kept checking the forum to see if there was any information I could use or would help. Well that was 11 years ago (yesterday in fact - a lousy April Fools joke!).
I had my diagnosis of bone mets in 2008 and a further liver mets diagnosis in 2013. I have been on various treatments since then, some more invasive than others. I am also hormone positive so was on Tamoxifen after my primary and my secondaries showed up whilst I was still taking it. Other hormonal treatments work in different ways to Tamoxifen so it is still possible to have those even though Tamoxifen is no longer effective. Depending on what your scan show your oncologist will recommend the right treatment for you. We are all different and some of us have different treatments at different times, there doesn’t always seem to be a set path to take. I hope after tomorrow’s appointment you have some clear answers nd know what treatment you will be on. Do come back nd ask any questions, someone is bound to be able to help. All the terminology is difficult to understand at first so, again, ask us any questions if some things aren’t clear.
Hi ladies. Wishing you both well as you wait for results or treatment plans to kick on. I have been dealing with bone lung and liver mets for a few years now and I just want you to know that it's very doable.
Best of luck Pxx
Sorry I don't know much about bone and liver mets. I have lung mets. I don't know how long it will take treatment to kick in and help. If you need to address the pain before your appointment give them a call.Normal treatment is either hormonal treatment or chemo. Then they usually give you a bone strengthener. Sometimes some radiation. Welcome and good luck. FF
Hi Ellie, my heart goes out to you, I have a bone scan tomorrow and am terrified I get the same results. I have no idea how to help you feel better but just wanted to let you know your not alone. Big hugs xxx
i was originally diagnosed in 2015, had mastectomy and full node clearance. I've just been told I have secondary in bones and liver and I'm gutted, don't know how to deal with it. I have app this week with oncologist to find out what treatment they are going to offer me. I take tamoxifen already and have done since I was first diagnosed.
can't believe how painful my bones are but it's the feeling of pressure under my ribs that's worst which I assume is my liver.
i was a member of the forums when first diagnosed and it was good to have people in the same boat and give support.
We Hi all and thanks for the welcome. My first line treatment is letrozole, abemaciclib (which at some point I will learn to spell without having to look it up!) and Denosumab. Started Friday, now playing the waiting game. It’s so hard knowing you have no control on whether you respond well or not.
but still feeling ok so far. I am back at work and still doing all my usual hobbies. Tired, but 2 weeks of terrible sleep don’t help there! Hoping that will improve a bit now I have started treatment.
i hope you are all doing as well as can be expected, and those with children are able to have a special Mother’s Day.
Thanks Bon! I'm OK. Just tired of health things! Every time I think I'm through issues and might also have finances headed in the right direction another thing pops up plus more appointments. Yesterday was my day off work and I told myself I wasn't handling anything medical or this weekend either! FF
Hi Kess, welcome to the forum, You will find lots of advice/support and also a bit of a giggle sometimes too!!
You will feel a lot more in control once you have a treatment plan in place, good luck, keep us posted.
hugs Janette xx
Kess, Welcome! I hope you find some support and comfort here. It is wonderful to have a place to vent where you are truly understood and celebrate when you have good results. Once you get your Plan of Action "POA" you will start to feel more in control and able to start to move forward. I've had mets to the lungs for 13 years. I live in the states, Pennsylvania. About an hour west of Philadelphia. Let us know what they have decided for you. Good luck. FF
Welcome to the thread, kess. You will certainly find support and info here. I am sure things will improve for you once you have your treatment plan tomorrow. And I hope your onc will take time to discuss it all. Take your questions, whatever they are! Use any BC nurses or Macmillan nurses you have at your unit. The onc will have talked about you at a group meeting to arrive at the best way forward. Do come to these threads if you have questions about the chemo, etc. There should be threads specific to your treatment, but this thread has visitors with lots of experience. Don’t be afraid to ask anything, and do express how you feel too. It takes time to adjust. You will.
good luck for tomorrow. Do you have someone to go with you? Give them a pad of paper and a pencil! I always take one of my wonderful friends. They often ask questions, or ask for spellings! We usually go over it all afterwards.
Thanks for your hello, ff, and again for reviving the bones thread. I always thought the ‘bones’ title didn’t eventually apply as it used to be a general place for anyone to join in, for any reason! Of course bones are the most popular destination for BC, but there have always been visitors who are bones free. All welcome! For a moan, a laugh, or a chat, or advice or support. Sharing so important. Lots are regular readers.
i started with bone mets, ff, but a liver spot grew and spotted in July 17. I went to herceptin because of one HER2 biopsy, which didn’t work, so was referred for ablation. Long story, which I finally described on the separate ablation thread.........dear Nicky a visitor there and always so informative and supportive. Anyway an ultrasound in a&e where I went for liver pain post ablation, showed hydronephrosis...........L kidney enlarged. Obvious on a ct but never mentioned before, although subsequently onc said he could see it on earlier cts. Hm. I was given the stent while in a& e. I thought they were short tubes like an artery stent. No. They are long tubes with a curl at each end. One curl in kidney, one in bladder. To drain. Enlarged kidney means urine backing up. I didn’t know I had it for 2 months, but it has since become increasingly uncomfortable, and painful, at the ureter/exit end. It must have moved. I am having it replaced or removed.........done under x Ray.........next Tuesday by a lovely consultant urologist. He doesn’t like leaving them more than 3 months, although some leave them for 6! Hoping he will see improvement...........apparently kidney function/bloods have improved a lot.............and remove it. I have been drinking loads so that might have helped. Never before thought about my fluid intake! Hope that kidney function improvement will persuade him to remove it, at least for a while. I’ll be waving my flag!
Sorry to ramble, but just sharing info. If I hadn’t had the US in a&e I wouldn’t know about the hydronephrosis. Zero symptoms. Which surprised them. Kidney function ok but getting low. R kidney seemed fine & doing all the work. A later pet scan lit up the lymph nodes by L kidney, squeezing the urethra. What a strange journey, and what a learning curve! I can’t comment on your situation ff, but I am learning that ct scans don’t show everything, and they need careful interpretation. On the other hand they are one of several tools.
All the the best with your root canal, ff. if there is no actual tooth removal it will be ok. Crowns are fine too. And fingers crossed with your other ‘symptom’. We continue to be ordinary human beings and not everything is related to our dx. I hope it passes. I have had a sore mouth.......top palate.....for a few days and assumed it was cape, but with bonjela for a few days it is gone this morning! Might have happened anyway!
take care. No sun here in buckinghamshire this morning. Where has spring gone? Love to all. A message from dear Carolyn on the cape thread today! Am off to say hi to her. She’s in the garden!
Hi all. I have been reading this thread after finding out a week ago my cancer has returned (primary dx 2014) with spread to pelvis and clavicle. Still waiting for a couple of scan results, but so far organs are clear. However, there is a large cancerous lump deep in my pectoral muscle which is concerning them.
I will find out tomorrow what treatment is planned, but they have suggested that due to its aggressiveness, it’s likely to be chemo to start even though it’s strongly hormone positive.
struggling to take it all in, particularly because I feel well right now. Coping ok in the day mostly, but the nights are pretty much a write-off...
You are welcome Mo! I really thought it needed to happen. Sorry you are uncomfortable with the stent. I knew of them but not much about them. May I ask why you needed it? My blood work shows some problems with my kidneye unless I was dehydrated. Are retesting the end of April. We shall see.
I was supposed to have a root canal today and it got moved to next Monday. Two weeks ago I thought I broke my wisdom tooth but I had lost the filling. Then after that I have another issue to take care of. I don't want to say what it is. I'm giving it another week to go away, if not then I need to see a Dr. Never ending!
Putting you on my hand holding list!! Hugs! FF
Hi ff! Just to say thanks for getting the bone thread going again! It certainly used to be a great chat shop as well as a place to share experiences. Hopefully it will be a drop in centre again. It was always a great place for newbies, whether bones or not, to find confidence and a cheerful response!
For me I’ve just started cape......I think the word is ‘coping’........but my worst se so far is my kidney stent. Didn’t know I had it for 2 months, but now very uncomfortable. Removed or changed next week. Praying for removal. The things we have to adjust to! I didn’t even know about kidney stents before! Love to everyone..........sunshine here in bucks! Spring?
Janette, The MRI doesn't bother me. I've actually fell asleep in it before. Only time I ever dreaded it was when my back was broke and that was bc it hurt.
Hope they don't take long giving you your results so you can move past it!
Remember, when you are listening to the crashing and banging, an MRI shows up more detail and doesn't give you a high dose of radiation.
I wish there was someone who took responsibility for veins. They seem to be nobody's problem.
Morning ladies, thank you all for your replies, hopefully I’m still “Stable Mabel” but it’s helpful to have a little info/knowledge on new treatments beforehand. Well I had my full body MRI on Thursday evening, flipping eck not the nicest of scans, I was in there for an hour and fifteen minutes, the noise is horrific!! Then I had to go straight to the next department for a CT where as per usual they couldn’t get my vein, that was a long evening at the Christie but these things have got to be done haven’t they.
Hope you all have a lovely weekend.
hugs Janette x
If you have to change meds it could be Exemestane which is a steroid hormonal. A tablet per day and it kept me stable for just over 3 years.
good luck with the scans
Nicky, It was awesome they could resection your liver. I hope it lasts forever! I am glad I got the thread started again! FF
Yes, well done FF, it was the most popular thread wasn’t it and we all used it to update or ask questions whether we had bone mets or not.
As an update from me I had a liver resection last April and so far no liver lesions have appeared since, however I’ve just had a CT so maybe the little critters are going to make a grand entrance again. Bone mets are still stable. Still on Fulvestrant and Denosumab, which is by far the easiest treatment I’ve had in years. Just fairly quick injections every 4 weeks (Denosumab every 8 weeks) so I’ve enjoyed the freedom (knowing it will change at some point)
Janette, My path with drugs has never been the same as anyone else. Sometimes doctors decide to just give you another hormonal, sometimes they decide it's time for chemo. Who knows what they will decide. I'm on E & E. Have you had that? Hoping you can stay on your treatment longer. Fingers grossed! FF
Hi Kate, I’ve already had tamoxifen when first dx with mets, was only on it for about 15 months then switched to letrozole.
Hoping the back pain is something and nothing 🤞🏻 We always get a little twitchy around scan time don’t we!
will keep you posted.
Hi Janette, I believe it could be Tamoxifen if you haven’t had that before. Good luck with your scans and fingers crossed that your pain is not progression,do you think it could be side effects of Femara?? Please let us know how you get on, Kate x
Hi ladies, thank you FF for getting this thread going again, I haven’t posted for a good while now but do keep checking in.
since bone mets dx in 2014 this thread has helped me enormously!
Anyway an update from me, been on femara (letrozole) for 3 and a half years now and fortunately it has been my best friend so far but over the last 6 months my tumour markers have been slowly creeping up again, they initially went down to 17 but in January they were 37 but onc said she wasn’t concerned because they were still in range, however I am getting more pain again now in my back (mets in hips, ribs and spine) so slightly worried that letrozole is coming to it’s end of life for me and maybe it’s getting to be new treatment time!! Anyone know what the next line of treatment is?
I’m off for 3 monthly CT today and also a full body MRI, radiologist recommended MRI now in place of bone scans.
Hope everyone is keeping well,
hugs Janette x
Couldn’t agree more Kirky but just to add..and for a few months afterwards.
As I’ve posted previously I had problems following dental work even though I stopped Denusomab for three months prior and it was almost 4 months after by the time I re started injections.That said, luckily everything healed but the Maxillo Facial consultant was really adamant that, while agreed about having the break in treatment, that Denusomab stays in the system for much longer and also questioned the frequency of the injections. In her opinion said 3 monthly was ample because of the long time it remains active in our bodies. Also, my hospital recently changed their protocol to 3 monthly due to research findings. I don’t know but would guess that having less in our systems would help to reduce the risks, and seems like it still provides the benefits.
Good to see this thread active again...thank you FF! Kate x
Many moons ago when I first was diagnosrd with bone mets, I was very active on this thread which I hear fron BCC is the longest running thread on tbe forum.
One thing after another I posted more on a Facebook group but I have been reafing all the posts (well, most) through my email alerts for years.
I have bone mets was on Herceptin for 6 years, kadcyla for one an now on Capecitabine which is doing the tricks. My tumour markers are back in the normal range.
Any way, all this ramble to say, I will make an effort to post here as well.😀♥️
Hi. I had a loose tooth which eventually came out of its own accord. A very rare but nasty se of Denusomab is osteonecrosis of the jaw. Basically if you have any invasive dental work that is below the gum line you should stop the Denusomab a few months before. That's why they recommend you see your dentist before you start treatment.
what exactly are the tooth issues please?
my oncologist rushed through the Secondary BC consultation, I was in shock in retrospect, but I do remember him mentioning something about seeing a dentist or telling the dentist about denusomab bit he didn't explain why.
Kirky, Last year I broke 2 vertebrae hiccuping. I had to have them pinned and cemented! Amazing how easy we broke! FF
I felt like I killed this thread 🙂
Well, i stopped taking my Denosumab last April because I was having tooth issues. They resolved in October and I was going to go back on the injections in December when guess what? I sneezed and fractured a verebra!!
So if you were wondering if the Denosumab works, I think it does!
The fracture healed after about 6 weeks (luckily no cord issues) and I had a fraction of radiation 1st Feb just to make sure and since then I've been fine, thank goodness.
So that's me. What's been going on with everyone else?