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Bone mets - please join in

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Re: Bone mets - please join in

Don't know if this helps, but my gut reacted terribly to Adcal..... so now I take calcium, vitamin d and magnesium as seperate supplements to give the correct daily doses. This does not upset my gut at all, and blood tests show I'm getting enough.

I'm also on denusomab, letrozole and palbociclib and it is working very well, all mets reducing dramatically, so I'm very fortunate. The real problem is the fatigue which I am struggling with and finding deeply frustrating - any tips????

Grumpy

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Jackie, I am sorry that you had to join this group but you have come to the right place. 

I was diagnoses with bone met in dec 2011, almost 4 years after my primary diagnosis.

for 6 years I was stable, the unfortunately the treatment I was then stopped working, I since had to change treatments a couple of times. I don’t know what treatment you will be on as it depends on your type of cancer but I am sure you will likely have a few sessions of radiotherapy for the pain (It might get worse before it gets better but don’t worry, it will eventually get better. You are also likely to get a bone strengthener, there are many out there, some are tablets, some injections or infusion. 

I am sure you must be worries, and I know if I tell you not to worry, you will find it difficult, but it is not a death sentence. Secondary Breast cancer is managed much better than it used to be. Take care. Xx. 

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Jackie, I'm sorry you have this shock and we all understand. I do not have bone mets, I have lung mets. The good pert of it coming back after such a long time is that it is often a slow growing cancer. Let's hope yours is. I had my breast cancer at 41 and it took 10 years for my Mets to show up. I turn 65 in Oct. Soon will be 14 years. Lol it's been so long I was adding wrong and thought this was going to be 15! Nope 14! I hope some bone mets ladies come along soon to give you some advice. I just wanted to welcome you. FF

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Hello - I'm new!! Had MRI this morning, and by this afternoon confirmation of bone mets in right femur. I've been walking either using a stick or crutches since June, unable to bear weight on that leg. Initial diagnosis was Dec 2002 when I had WLE, chemo, rads and ovaries removed at age 32. I'm totally in shock that it's back after all these years, and completely out of the loop on treatments etc.

i have a CT booked for Monday afternoon (can't eat for 4 hours before - what's that got to do with my bones....) and appointment with orthopaedic specialist Wednesday morning. No word from breast cancer team or oncology yet. What questions would you advise I ask? I'm feeling stunned right now so any advice would be great.

Jackie x

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Hi Katzygirl.Gosh you are having a tough time , I remember getting shingles when I went through cancer treatment first time round .Its so painful, and the little ulcers on your lip really can get you down .So sorry for your loss  at this awful time .Of course I will meet up with you , when you are up to it .I believe we are on same treatment, so hang in there , side effects will improve Take Care stay strong xxx

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Hi Hannah, hope you are well. I’m not sure which treatment you are on but know you live in my home town so under same team. I’m now 3 weeks into treatment and really struggling with diarrhea that comes on so quickly it’s getting really debilitating. 

2 days in I had a pain in my side that turned out to be shingles so 5 tablets a day for a week which also has the side effect of diarrhea. Was hoping last week would be better as they had finished but I think it was worse.  I have now had 3 weeks off of my beloved job and wondering if it will ever settle. I now have a bottom lip covered in little ulcers and itchy spots on my upper legs. 

I did get a tip from another site to take 

Abemaciclib with high fat foods like peanut butter, I was hoping this was the breakthrough but not so far, I hate peanut butter too lol. My Mum died on Tuesday so have added stress of funeral arrangements and a fall out with my Sister so maybe I can’t expect to pick up yet. 

Would love to meet up in a few weeks when I will hopefully get my positivity and my stomach back. I hope you continue to do well and sorry for the moan. 😆xx

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I was unfortunately taken off Pablo because side effects they were looking at reducing dose but this month I'm. Having rest month I'm. Due start. Bone drug too and I went into stage four too my. Counters have gone down mjnd hut dint. Know. Radiotherapy or lethzole xxx

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Hi Daylightdancer

 

i am scanned every 3 months. Went straight in at stage 4 just over 2 and a half years ago so can only be treated not cured but the palbo letrozole combo seems to be working. There are quite a few of us on this so hopefully I can give some hope to others x

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Wendy I'm so. Pleased for you I was diagnosed in June how often.dkd you have scans after diagnosis xxx

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Hi All

 

Yesterday I got my scan results and good news in that I am stable so still on Palbo and letrozole and now on Month 22. I really couldn’t believe it so long may it continue for us all. 

 

Wendy

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Hhhmmn that’s news to me too, thank you for that I will ask my onc about this at my next appointment.

janette x

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I didnt know there was two types either of bone mets xx

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@ElaineD wrote:

There are 2 different types of bone mets (lytic+sclerotic-apologies if you already know this). It could be you have both types (I do), which would explain this apparent discrepancy.


Sorry for jumping in, but I just seen your post and I have bone mets and didn't know there were 2 different types. Do you know enough about them to explain it to me. Thank you Shelly.xx

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Hi Katzygirl Good Luck with treatment, fingers crossed it goes well .Am here if you need to chat x

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So went to consultant last Wednesday my cancer gone down from 200nro 150

 

However my calcium still not high enough for bone drug which can't spell what's everyone's effects on this drug I'm worried about the tooth ache and jaw pain. She wants me have well. Month so no precibib either but I'm slowly refusing steriods 1mg I was on 8nad one pont, tell you this much dunno if the lethzole or what I'm stiff as anything getting up xxx

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Hi Hannah it’s good to have contact

with others in the same town going through treatment.  Glad yours is going well apart from the SE’s

our biggest dread! Tomorrow’s the start for me except for 4.5 years on Tamoxifen and 1.5 on Letrozole unfortunately I guess the later didn’t work so I find myself here. Perhaps we can have a meet up when I have settled in to my treatment. Hope you continue to do well xx

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Hi Katzygirl I too live in Colchester.I was first diagnosed with Breast cancer way back in 1999 , had chemotherapy and radiotherapy, and thought I had seen the last of it .Un fortunately it decided to return last year , was devastating. Am in a treatment plan which is going ok , side effects not great , but a small price to pay , if it keeps it under control x

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Good afternoon all

 

Just seen the oncologist about scan results, and all the Nasties are reducing dramatically!!! 

This is after just 3 cycles of palbociblib and denosumab, so I'm thrilled to bits.

The treatment can work - not cure us, but give us a good quality of life for a long time, and that is encouraging.

The cancer fatigue is the side effect I find hardest to deal with, I'm used to walking 5-10 miles most days, and I'm lucky to manage 2/3 miles now and that's with pauses to rest and/or a strong coffee. I do all the recommended things - regular gentle activity, pace myself, rest before important events etc etc, but frankly the improvement is marginal.

Any tips, anyone???

grumpy

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Hey

 

How are you I'm Cazzy I've been having calcium dc40 as calcium low last month before i can Denosumab. So I'm getting bloods taken Monday check up Wednesday and maybe gett the injection Wednesday all good what side effects yiu had if any or is there

 

Hooe don't get many as been horrific with radiotherapy and been pretty ill tbh xxx

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Ooh I'm glad thread of this is here. 

 

As. I've. Recently. Had tough time. Xxx

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@Anne30 wrote:

Hello. Sorry to hear you’re joining us but welcome. It’s a helpful place I find. I have mets in my bones. I’ve been on Palcibiblib (I can’t spell it) Anastrosole Zometa and Calichew since diagnosis straight to stage 4 in   March 2018. I’m scanned every three months and so far they have been encouraging. I work full time and feel fine. My blood counts are too low and times and the palciobiblib is delayed a week. I’m only on one week on one week off. It sounds as if your treatment plan is very similar - amiciclib is newer. We’re lucky to be on these new treatments. My advice would be keep going out and enjoying yourself. I’ve pretty much given up alcohol as the nurse advised me to do that to give the treatment every chance of working. I also eat healthily. A lovely lady on the forum has been very helpful to me and she advised diet changes. All I can say if it’s any help is that I’m over a year in and feel fine x



Thanks Anne that’s really good to hear xx

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Hello. Sorry to hear you’re joining us but welcome. It’s a helpful place I find. I have mets in my bones. I’ve been on Palcibiblib (I can’t spell it) Anastrosole Zometa and Calichew since diagnosis straight to stage 4 in   March 2018. I’m scanned every three months and so far they have been encouraging. I work full time and feel fine. My blood counts are too low and times and the palciobiblib is delayed a week. I’m only on one week on one week off. It sounds as if your treatment plan is very similar - amiciclib is newer. We’re lucky to be on these new treatments. My advice would be keep going out and enjoying yourself. I’ve pretty much given up alcohol as the nurse advised me to do that to give the treatment every chance of working. I also eat healthily. A lovely lady on the forum has been very helpful to me and she advised diet changes. All I can say if it’s any help is that I’m over a year in and feel fine x

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Results day yesterday, lost count how many vertebrae affected but don’t think there were many that weren't! Also on skull, pelvis and concern about left hip so booked for X-ray. Good news is no organs affected (brain not scanned though) I have no symptoms whatsoever which I am grateful for. Starting Abemaciclib, Faslodex and Denosumab on 5th August. 

Would love to hear some more details from all you lovely long timers as I really hope to be here in 10 years and beyond! 

How old were you when diagnosed, I’m 58, had stage 2 6 years ago, new stage 2 diagnosis 8 weeks ago then secondary (so stage 4) 4 weeks ago. 

What treatments have you had over the years and do you follow any special diets? I am a healthy eater who likes treats too, I also have a very busy social life and like a drink at weekends but wondering if I need to drop the treats and alcohol. 

Onc said not to worry about fad diets as it’s stressful enough dealing with the cancer, great to hear but then you wonder if she’s thinking you may not have long so enjoy it 😬.

Anyone else in Essex near Colchester that would like to meet up or start a meet up group? 

Thank you all, I have found this group invaluable and I’m sure I would be in a crumpled heap without it. Xx

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Hi Janette 

I don't get bone scans only CT of body neck to pelvis. Not had a MRI since 2009 of remaining breast and liver to check they were OK before I started chemo. 

Must give you confidence your oncologist has got everything in hand. 

Got my fingers crossed for you. 

Linda 

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Hi Linda, yes 3 monthly CT and she has now swapped the bone scans to MRIs now too, my markers have been slowly creeping up but she said she wasn’t worried as scans were stable.

janette xx

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Hi Janette 

Good luck for Thursday. Hope Letrozole keeps working for you. 

Yes for me the uncertainty of what to expect with new treatment . I will keep you posted how I get on. 

Do you get scanned every 3 months as it does not seem that long ago but it must be. 

Weather glorious today. 

Linda 

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Hi Linda, sorry to hear tamoxifen has stopped working for you, good luck with your new treatment. 

It’s results day for me on Thursday, it never gets easier does it!! I’ve been stable on letrozole now for coming up to 4 years so I’m conscious of the fact that my time on it could soon be coming to an end! 

Hello to all the other ladies on here, good luck with treatments and any results.

hugs Janette x

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Hi Funnyface

I forgot to ask you last week when you mentioned you had been on Navelbine for 5 years which is amazing.  Did you get many side effects if any what were they if you dont mind me asking. 

As you know I am taking it in tablet form. 

Thanks

Linda 

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Hi Channie 

Thank you for your reply . I have been on Denosumab for about 5 years now and as far as I am aware there is only a set dose. I have mine monthly. 

If I were you I would definitely press for a density scan it is different to a bone scan. Last bone scan I had was Jan 2014. 

Linda 

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PS. Funnyface, I too had to have screws and plates operated on my ankle it was such a bad break. I'm so scared to walk when it comes to it. Gonna need loads of physio. 

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Hi Linda/Funny face

6-12 weeks to heal my ankles :-( just stuck at home at the moment with Netflix unless I go out to hospital for my appointments, which is a challenge. 

They did have cold cap available but I couldn't endure it. Was freezing! 

It's scary how brittle our bones are. Funny face can't believe you got hiccups and broke your back! Omg. And how they couldn't pin point your diagnosis on it. I wonder if my bones are compromised on Exemestane. As I been fine up to now. 

I have had many bone scans before but they never said how my density was directly I will question more on my next appointment in August. I'm on denosumab also which helps strengthen the bones, but maybe dosage needs to be increased I dunno. Also take calcium and vitamin D supplements. 

 

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Channel, I broke my back in two places from having hic-ups for an hour. I had to have kyphoplasty (pinned and cemented). CT had said I had cancer in it. MRI said osteoporosis. Bone scan was questionable. Dexa scan said I didn't have osteoporosis. Orthopaedic surgeon said I had osteoporosis. So not sure why it broke. FF

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Hi Channie

I remember now you did mention about your ankle the other day. Very scary to think our bones are that fragile they can break so easily. Have they said how long it will take to heal? 

Have you never had a bone density scan? I have only had one a dexa scan where they scan your spine. Mind it has got to 5 years or more since I had it. Yes I would definitely press for one. 

Did they not have cold cap available at your hospital then? Mind it was uncomfortable but after about. 10 minutes I got used to it. 

Pleased to hear Navelbine did not affect your hair although it is no guarantee but it is really nice to hear. 

Hope you get more mobile soon. Must be awful being stuck in during the summer. 

Linda 

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Oh and navelbine didnt affect my hair. It was fine. I was never able to use cold cap so lucky you could. 

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Hi Linda, 

 

I'm not mobile as I've fractured my ankle and sprained the other foot too. Must be cancer related, as I know my bones aren't the same anymore and Exemestane can cause brittle bones leading to fractures. I'd need onc to measure my bone density and ask her advice. As it wasnt like I tripped or fell over or anything, I simply got up to walk and heard 2 or 3 loud cracks and collapsed on the floor! I was in total shock. My bones are just not the same anymore. 

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Hi Channie 

Sorry to hear you are not very mobile at the moment . If you don't mind me asking is it cancer related? 

Thank you for letting me know regarding tablets. When I am at chemo unit on Tuesday I am going to ask how often I will attending. It was all abit vague last week. 

Can I ask did the tablets effect your hair as one of the side effects can cause hair thinning. I did cold cap when I was on taxol. It did thin but I did not loose it all. It is nice and thick now I would hate to think it is going to affect it again now. 

 

Funny face

Got fingers crossed CT scan is OK and you are able to stay on EE. 

I tend to have to wait for a month for CT results. It is the worry waiting that is the worst. 

Nice weekend ladies. 

Linda 

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Hi Linda, 

I cant remember what grade mine was and my letters are downstairs at the moment (not very mobile at the moment). I took navelbine once a week for 2 weeks then had a week off. It was always on the second week that I got side effects. Hope yours goes ok and you get none. Keep us posted xx

 

Hi Funnyface, 

Best of luck for your results. Hope you get good news and that meds are working still. Keep us posted xx. 

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Yes ladies, I'm still on E & E. I just had a CT today and have an appointment with my oncologist realty August for results. There was a possibility that treatment has failed so will find out soon. I have been on it for 26 months. I used to get my results in 2 days but have to wait longer since my onc is at a different facility than where I got my CT. Enjoy your weekend. FF

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Hi Channie

Don't mind you asking about my age. I was 57 at diagnosis  I had regular mammograms but unfortunately mine was lobular which does not show up on mammograms as it starts off  as soft tissue rather than a lump. Had one in 2008 then in July 2009 I noticed a slight indentation the rest is history. 

So young to be facing all this. Do you know what grade yours was? Mine was grade 2.  Regarding Navelbine I take 110mg once a week for 3 weeks then have a week. Did you take it for a week then a week off? 

In one respect just as well the fluid was checked. 

Must have been really hard having such awful muscle and joint pains. I will just have to wait and see at the end of the day quality of life rather than quantity is the most in important. 

Linda 

 

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Hi Linda, 

I was on letrozole too forgot about that one. It didnt work for long either. 

I used to be HER2 negative but they found it changed to positive when they biopsy me on my lung fluid drainage in Oct 2018, so I started Herceptin in Dec 2018. 

On navelbine, I had side effects from the second tablet only, each time I took it I was nauseous and had terrible joint pains for a week. I had to be in bed. Then gradually subsides and you get a week break before starting again. Hope you don't get this though. 

Yes was in total shock being diagnosed with secondary as was all clear they said they caught it all at primary, I even had lymph nodes removed underarm. But I started getting bad bone pains in my back after a year and pushed for scans, they eventually gave me a bone scan which led to the diagnosis. 

I was only 41yrs old on primary diagnosis. I'm now 47. How old were you on diagnosis if you don't mind me asking? Xx

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Hi Channie

Thank you for your reply.  I was diagnosed with breast cancer and bone mets at same time 2009. Had chemo then radiotherapy  Match 2010 started on Letrozole which worked for 4 years. Everolimus is a chemo tablet which is often prescribed along side exemestane. Had cape in October 2017 which worked until July 2018. I have only just started Navelbine.  You managed to take it for 4 months what were your side effects like . Your cancer must ER positive and HER2 positive which gives you more options. Must have been such a shock in 2016 to get diagnoised with bone mets since your breast cancer must have been caught early. Sounds like you are young as well. Yes tamoxifen only worked for 8 months. 

Once again thank you. 

Linda 

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Hi Linda, 

 

I've had bone mets since Oct 2016. (My primary was back in Oct 2013, had lumpectomy, chemo, radio, lymph node removal underarm and was all clear until 2016). Since secondary diagnosis I have been on different treatments (zometa, zoladex, capcitibine, navelbine, taxol, now exemestane) had to change because bone mets were getting worse and treatments weren't working. I also have herceptin now and denosumab.

I had navelbine for 4 months and it was only towards the latter months that fluid was detected in my lungs (on a CT) to a point that I needed it drained out. It was no wonder I was so out of breath during that time! 

I was on tamoxifen too after primary diagnosis and all the treatments and it worked for a few years until my secondary diagnosis. 

When do you start navelbine? Has tamoxifen stopped working for you?  

I've not heard about Everolimus maybe I will enquire with onc next time. Is it a hormone med in tablet form? 

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Hi Channie 

Like you I found taxol really hard. I was meant to have 12 but had problem with neopathy so got switched to tamoxifen. I was OK for the first couple of days after taxol probably the steroids but after that it was terrible. 

I did not realise you had navelbine for 4 months just with you saying you had lung problems after second lot of tablets. 

I am surprised you have been on such harsh treatments for bone mets. If you don't mind me asking how long have you had bone mets? It will be 10 years in August for me hard to believe.  It will be 2 years in September since liver mets. 

I was on Everolimus and exemestane for 3 years 8 months from 2014 till Sept 2017. Hope it works that long for you. 

Once again thank for sharing. 

Linda 

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Hi Linda, 

 

My mets are in my bones only and they found some in the chest walls after a biopsy on my lung drainage operation. 

I was on navelbine for 4 months last May to Sept. Taxol I had 15 rounds of, was due another 3 rounds but I begged onc to take me off it as it was so gruelling on me. Finished that just this March. So she agreed and put me on hormone treatment exemestane instead, straight after taxol. so far so good. 

Let us know how you get on with navelbine, fingers crossed it works for you xx 

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Hi Channie 

If you don't mind me asking where are your mets? Mine are in my liver and bone. 

Scary you having to have your lung drained.  

Sorry you are laid up with a broken ankle. 

Linda 

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Hi Channie 

Thank you for your reply regarding  your experience on Navelbine . 

Pleased you are now stable after being on taxol. Although it sounds like you had a terrible experience. How many did you have? I had 10 taxol  which I finished last October . Hope extermestane works well for you for a long time. 

Once again thank you. 

Linda 

 

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Hi everyone,  I was diagnosed with secondary breast cancer on the right temporal bone area in January of this year I was advised that surgery or even a biopsy would be more risky than beneficial. So my only option was exemestane and high dosage of radiotherapy - 30 grays over 10 fractions.(which finished in early april) I understood that I  would experience increased pain during and after the treatment in the tumour area. I was prescribed 60mg of codeine 4 times a day to help with the pain. The pain subsided quite quckly. But I am feeling the same pain at the site of the tumour and I am  getting very anxious that this means the cancer is active again. I have just had my scans and will get my results at the end of july. Could the cancer be active again? And if so is chemo the next treatment? Are there any other options. The more i read the more confused and frightened i become! Has anyone else experienced similar?

Sending Love to you all Maria xx

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Hi Lyndyloo, 

 

I have been on navelbine for a short while last year. On the 2nd tablet, 2nd week it made me sick and with bad joint pains, I was off work a week. Then fine after. It could also have given me a reaction to it as my right lung was filled with fluid after I started treatment and had to go hospital to have it drained out. So onc took me off navelbine and we started iv chemo taxol after my lung drainage, which made me even more ill, I was bed ridden for months. But it worked and kept the mets at bay and I heard those magical words of Everything is stable. 

Everyone reacts to drugs differently though so hopefully you will have no side effects. 

I'm currently on Exemestane now and it's working well. Due CT in 3 weeks time to check progress. 

I've also fractured my ankle recently and totally immobile. I guess our bones are just not the same anymore.  

Best of luck x 

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Hi Linda

Sorry to near that Tamoxifen only worked for a short time.  At least it gave you time off chemo which is always a good thing in my books!  I hope Vinorelbine works well with little side effects.  I know there's not many of us who have had it or who are on it so, other than FF, I don't think there's much common knowledge to share.  Ramade, I'm sorry also that Cape has stopped working for you.  It's such a b*mmer when we don't get as long out of a treatment as we hope for.  I do hope a new plan is put in place for you asap.

I'm currently back on Eribulin, which I last had in 2017, and seeing if it is working when I have  scan next month. It's certtainly working on my hair which is now very thin and straggly - not a good look and makes me want to shave it all off but I'm waiting to see if the 'fal'l is over before I do something hasty!  So far SEs have been OK except for the 1st cycle. And I keep getting a flare up of an old root canal toothache which isn't good but seems to be linked to when my WBC/neuts are at their low point.  Trying to get an appointment at the max-fax unit at the hospital to get some decisions about what to do bearing in mind the bone strengthening treatment and it's associated ONJ issue. Something i really could do without.

Hi also to FF, hope you are continuing to do well on E/E.

Nicky xx

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Afternoon Funnyface 

Thank you so much for responding . Really good to hear you got 5 years out of the Navelbine.  I really hope I get the same length of time. Yes I had read that US don't do the tablet form. As far as I can remember you still are doing well on Everolimus and extermestane . Hope it is still the case. 

I started the new treatment yesterday. 2 tablets per week for 3 weeks then a week off. How is the IV chemo administered? 

Once again thank you . 

Linda