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Bone mets - please join in

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Re: Bone mets - please join in

Hi scmooley and riversideawn, yes there are loads of bugs about...I have for years now used vicks first defence, which seems to protect me when I use it. Just squirt it into the outer walls of your nose..not straight up. And the stuff clots any bugs that get in...the nose tends to be where these things grow before you feel ill.

 

anyway, best of luck, hope the Ibrance does it’s magicxx

 

Hugs, Moijan

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Re: Bone mets - please join in

Hi riversidedawn, your side effects sound like what I had after my zometa. I'm on day 3 of Ibrance today and no side effects yet. Interestingly I was due to have my 2nd Zometa next Tuesday but it has been put back three weeks so that it can conincide with my Ibrance cycle in the future. I did wonder if I got fluey again next week, how would I know whether it was the Zometa again or the Ibrance. At least I have a clear run now on the Ibrance so should be able to spot any side effects (hopefully none 🙂 ) There's so many colds and horrible bugs around as well at the moment it's hard to know what's going on!

 

Have a lovely weekend ladies, it'll soon be Spring Woman Very Happy 

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Hi ff. nice to see you posting, don't worry Spring will come,usually does. Have been on monthly denosumab for 4 years and never felt and se's. my onc said once a year is enough but i said no don't change anything because i haven't broken and bones while i've been on it. She said ok that's fine. Also it doesn't go in a vein thank goodness because my veins have said no more and won't co operate at all any more. Giving bloods is the worst thing. Hope you get on well with it.

How's that little granddaughter of yours?

Hugs

Ramade

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Renee, Haven't chatted in a bit. Hope you are doing OK. You always amaze me with your strength. How are your treatments going? How hasyour winter been in your area? We have had a few small snows nothing major, but bitter cold for weeks. The little bit of snow would stay bc not warm enough to melt. Another storm coming tonight. I'm a cry baby, I want Spring!

 

I start bone strengthener denosumbab (Prolia) in about a month. It is given every 6 months. Hopefully it will help prevent another fracture. I've always been afraid  of taking bone strengthers. Scared of getting the side effect ONJ. 

 

Take care of you! FF

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hi Maria,you are definitely at a good hospital, they may want to do an mri now as it shows the bones more clearly.no need to worry if it's only one spot. if it is close to the spinal cord they may do radiotherapy, i know all this because i've just been down this route. i have mets all the way down the spine and breast bone and hips.

thinking of you

hugs ramade

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Hi other Ibrance ladies!

I take the last one of cycle one tonight and looking forward to my week off. I spent the first 4 days in bed with "flu", a couple of very tired days, then 3-4 days later thumping headache, sore throat and stuffy nose!

I did have my first zometa infusion on same day I started ibrance so no idea which caused what! I've got my pre zometa blood test today but also being Day 21 of ibrance I wonder what it'll show?

I've then got 5 ibrance free days before next zometa and zoladex on Monday. Such a confusing cocktail. Interesting to see what next month holds.
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Thanks Bandit, that's really reassuring to know Heart I'm glad that you're managing to carry on as normal (Practically) that's what i'm hoping for too. (fingers crossed)

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Hi to everyone on Palbociclib and Letrozole.  I have just completed my 17th cycle on these drugs.  I have extensive bone mets so also have monthly Denosumab.  I have to say that I have found this very doable.  Except for the hospital appoinments (many as I am currently still on a trial for these meds in the U.K.) my life has not changed at all.  I also have a busy social life and lots of animals.  First few months I was a little tired at the end of the cyclebut this is not really the case now..  My White and Red blood counts have been low the whole time but I have not even had a cold.  My hair has thinned slightly but I am lucky that I had thick hair to begin with.  I started on 125mg of Palbo but recently requested a drop to 100mg when I found out that this is really the ideal strength to be on.  Good luck everyone and I hope these drugs are as kind to you as they have been to me.

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Sorry you're joing us as well Deedee. I'm starting my ibrance next week (can't spell the other word) we'll be able to compare s/e's although of course we won't have any  Woman LOL

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Sorry to hear you're going through the same Riverside Dawn 😞  I've got my first Ibrance on Tuesday and my next Zometa the following Tuesday. It would be nice if they could tie the two up together as i'm having to get two blood tests done!! A friend of a friend is on Ibrance and apparently the only s/e she gets is tiredness. (fingers crossed) My friend also confirms that she has no s/e's from Zometa so maybe we're just unlucky? although i'm still hoping it was a one off. Hope you have a lovely weekend xx

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Hi everyone,

was diagnosed with secondary bc mets to the bones in neck and ribs just before Christmas. Lovely present eh. Beginning of January changed from tamoxifen to letrazole got denosumab injections and calcium tabs to take daily. Also got one off radiotherapy  to neck for pain as tumour has made big hole in neck apparently. 

 

Will be starting palbociclib on 6th February.  Anyone else on this if so, how was the SE’s ?

 

Thanks Doreen xx

 

 

 

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Hi schmooley, I was diagnosed just before Christmas too - mets in vertebrae, pubic bone and sacrum. I'm 50 with 12 and 15 year olds.

I'm on zoladex injection monthly, zometa infusion monthly, letrazole and ibrance. Started this new regime 10 days ago (Wednesday) and spent Thursday to
Sunday in bed with flu symptoms plus nausea, diarrhoea, headache etc etc. Nurse reckons it was zometa which caused the SEs and hopefully will be easier next time.

I've not had any noticeable SEs from letrazole/ibrance combo. I also take venlafaxine for the flushes.
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Thanks funnyface xx

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That's the way to get through it, Schmooley. Once you figure out your reactions, you can plan around it. For me I've found getting my treatment on Thursdays works good. I get the treatment, then Friday if I'm working I can usually push through it and then I usually can still enjoy my weekends. You will figure it out! FF

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Thanks ladies for your kind replies Smiley Happy I'm usually quite prosaiic about things and just get on with it but all the side effects caught me out a bit as I wasn't expecting them from the infusion. I'm seeing a friend tonight who has been having them for about a year and I will ask about her experience, although I appreciate everyone's different. I think I just want to get into some sort of treatment routine so that I know what to expect and when so that I can make the most of the better days.

 

Hope anyone having scans gets good results and you all have a lovely weekend xxx

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Thanks Janette that’s very reassuring but I have really bad knee and hip pain with burning so sent for a scan. Onc gave me super strength painkillers which make it feel drunk for the first couple of hrs but great for a good nights sleep. Now waiting phone call for results. I just feel like constantly in treatment as tablets work then they stop and I get pain and back in radiotherapy again. I am working full time and they are really supportive but I just want a period of calm and normality. We have booked our holiday and want to be stable to go . Sorry just need to offload x
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Hi Wendy, sorry to hear you are getting new pain. I also had this at the beginning of December, contacted my oncologist and she brought my scans forward, got the results last week (after a horrible worrying Christmas!!) anyway turns out all is fine and even better with improvement from last bone scan!!! To say i was relieved is an understatement, i was convinced things were going wrong!! And for the first time I saw since dx (4 years ago) I looked at my scans 😬😬 I thought I would be traumatised but actually I was really glad I did because now I know where I have disease so now I know if I have pain in a certain area at least i know if it’s a diseased part or in a new place!!
Hugs Janette xx
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Hi All 

 

I have not been on for a while as been busy with Xmas, work and hospital appts. 

 

Funnyface congratulations on your granddaughter. if I did not congratulate you before. 

 

To all the new ladies I would like to reassure you it does get better once you start treatment. I was straight in at secondary stage following investigation into a pain in my leg so devastated as totally unexpected and told they could not cure me, just treat me for years  and now almost a year later I am still here. Something I could not believe when first told. 

 

I have bone mets in hips and spine and I started on tamoxifen which only worked for 5 mths and now on letrozole and ibrance (I too find it easier to call it this) denusomab and zometa. Very little side effects except the joint pain and hot flushes. I have also had 3 separate lots of radiotherapy and recon on my breast following masectomy.

 

Recently been having pain in leg so back in the scanner yesterday and now waiting results. The pain started before I went on the ibrance so hoping they keep me on it. 

 

This is an awful journey but I find the posts on here really useful and give me hope. I am 51 with 2 grown up children and desparately want to see some grandchildren too 

 

Love to all 

 

Wendy 

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Hi Schmooley
Sorry your SEs are not good.Both tamoxifen and exemestane can affect your vision and cause cataracts so maybe previous treatments are catching up with you. I was on tamoxifen for 5 years and have been on exemestane for over 2 and have a developing cataract. I am also, like Carolyn, on denosumab which doesn't cause me many problems and is much less hassle than infusions. Hope things settle down for you.
Bon xx

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Hi Schoomley, I don't have any experience with bone strengtheners. Google for the side effects. I would definitely scroll through the whole list. Sometimes if you just type in a few words "like problems with eyes while taking Zometa" you might get some sites to come up that people had this problem. Btw, You can do this! You're strong! Let's hear your "ROAR"!! FF

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Hi Schmooley. I was on zometa for about 2 and a half years. I had all of the SE’s after the first one or two and then it settled down...maybe just a bit tired after each one...

They started me on it when denosumab was just starting to be prescribed. They did say that they would put me onto it when it was more widely available but Zometa was doing okay so they kept me on that

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Hello schomooley

A big welcome to the threads and our little family of real ladies that understand. .
I have denosumab injections as a bone strengthener but lots of ladies here have zometa and might have better advice ...it might be worth having a word with oncologist about this option as it's quick too ..just a jab !!
I have found everything has side effects and I seem to get everything listed too! ! But if it keeps the blighters from having a party in the bones and liver then we have to try to live with things !!
I have been on letrozole for over 2 years now and I used to moan about the side effects here all the time but I guess I am just grateful I haven't needed to move onto the big guns chemo yet!!
Ibrance is becoming more available here now in the UK and there are a couple of threads running here and a few ladies now taking it.

Once again welcome xxxx
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Hiya ladies, can I join you?

 

I was first diagnosed in 2009 with primary bc.4/8 nodes affected, poor prognosis. Hormonal oestrogen 8/8 Prog 5/8 (I think) HER2 neg. I had mastectomey, chemo E-CMF, Radiotherapy and hormonal tablets. Mangaed 4 years on Tamoxifen, 2 on Letroxole and 1 on Exemestane before i'd had enough. (Also had diep reconstruction somewhere along the line)

 

In December, just before Chrimbo (Thanks God!) I was diadnosed with bone mets, a few in the spine and one pelvis and joy of joys, liver mets also. Multiple sub 1cm spots. They hoped to biospy liver for pathology but undortunately they have not been able to do this due to size. They've put me on Zometa for bones and will also go back on Exemestane. I tolerated this a bit better than Letrozole. I've also signed the paperwork to start Palbocicclib (think i'll just call it Ibrance from now on as it's easier to spell!) but haven't got a date yet. Also forgot to mention that I am going to have a liver mri to have another look in case they see something that they can biopsy. In the meantime they're going to assume same pathology as primary.

 

I had my first infusion last week and apart from the usual vein nightmare it went in ok BUT i've not been great since. I think i've had every side effect on the list. Nausea, flue like symptoms, strange aches and pains, sore teeth etc but the thing that's affecting me most at the moment is my eyes. I'm having trouble at the computer at work. I do have an opticians appoinment on Sunday to check my eyes anyway. What I would like to know is if anyone had similar symptoms did they have them after every infusion or was the first one worse and also do they subside over the month? am most worried about my eyes. I did tell the oncologist that I would give Zometa one more go in case it was a one off but that was before the eye issues? any advice welcome 🙂 thanks

 

I wasn't worried before hand about the infusion but i'm not sure I can cope with these side effects as well as any from the future chemo. I am 50 years old with a 9 year old daughter and obviously want to live as long as possible but am now feeling a bit worried in case I can't tolerate the drugs!

 

Any comments/replies greatly appreciated, thanks xxx

 

 

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Hi annrose, what side effects do you have and how are you coping with them?
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Annrose, Hi I live in the USA in Pennsylvania, about an hour west of Philadelphia. Ibrance and letrozole worked for 21 months for me. Letrozole made my knees scream at me! They settled down some after about 6 months and taking oxycodone. I only took it if  knew I would be on them. Ibrance made my legs week. I started it in August and being in the house through the winter I didn't realize how weak they were. We went to a friend's in late Spring and she has a lot of outside steps and walkways to get to her door. There is no rails and I couldn't step up one step. It didn't matter which leg was up or down. I would suggest exercising your legs. We all get different side effects, but I know a couple ladies who had this problem. Also, my first scan at 3 months showed some improvement, the 6 month scan was major improvement. Make sure you and your Dr. give it a chance to work.  I have lung mets. They thought I had one bone met, but recent MRI says no bone cancer just osteoporosis. I've had lung mets since Nov 2005. Good luck! FF

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Hi riverside dawn good luck with IBRANCE I have just finished 2nd 21 day course. It's well proven in the USA 

good luck!

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Re: Bone mets - please join in to nicky08

Hello Nicky delighted to talk to you. Hope you are having a good day.  Just finding out how this site works.

so little info of my oncologist so much to take in. I am on the new drug IBRANCE USA. Pablociclin England.

is anyone else taking it? I have a lot of side effects. What mess are you taking?

kind regards 

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Crazy weather here today. It is going to be 62° today and tomorrow.Sunday it's to be 24!

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Have replied to your other post. Hoping you get some other replies as well with something more helpful than I was able to give!

Nicky x

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Update. I saw my onc on Monday and he confirmed 2-3cm tumour in one vertebrae (t12) plus tiny ones in groin area and sacrum.

My initial treatment regime is:
Monthly zoladex
Daily letrazole
Ibrance 21 days out of 28
Monthly zometa infusion

Also on venlafaxine and amitryptolene for pain, drepression and flushes.

Onc said he'd review me monthly because ibrance is new and I'll be scanned every 3 months to check progress. Could change drug combo, possible chemo if all else fails.

Had first zometa, ibrance an letrazole yesterday and having trouble sleeping and I've been awake since 3am feeling terrible. Temperature, nausea, diarrhoea, thirsty dry mouth, dizzy/fuzzy head.

I'm assuming this is down to the zometa? But could be the tablets 😞 How long does this last? Is it just for a few days after the infusion like chemo or is it permanent?

Coping tips highly welcome!

Xx
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Jehovah....have a look at the 'meet ups' thread-good luck with itxx

 

Moijan💚💚💚

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Hi ladies, quick update from me. I was dx with bone mets in November, started zoladex and exemestane in December and first zometa booked for Wednesday.

I saw my oncologist yesterday and he is keen to get me on letrazole/palbociclib (ibrance) combo asap and is confident that I can pick up the drugs on Wednesday when I go for my zometa infusion.

Moijan I know you have been campaigning for this drug. It is interesting that my onc said it was approved in November for first line defence against secondaries with no mention of no previous chemo. I had 6 months of chemo in 2014/15 and he is going to "cheat the system" and say that I didn't take the zoladex/exem as that would preclude me even though it was just one month.

He said that this combo should halt the progress of mets for an extra 6/7 months on top of letrazole only.

Also everything else I've googled about ibrance says it's for post menopausal women, but he's giving it to me with zoladex because I'm pre-menopausal.

May be I'm lucky and have a good oncologist? He is a leading clinical oncologist in our area and heavily involved with trials. He also wants to get me on the cyberknife trial.

Hope this may reassure some of you that you may be able to get this miracle drug xx
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Hi Ladies, OK it will be decisions injection every 6 months for my osteopcrosis. I have to see my dentisiry first and waif 8 weeks from treatment. I go see Dennist for a cleaning on Thursday. Hopefully if I need any other work I can get in quickly. Have a decade scan next week plus cardioaogist. Blocking these things out of here. My CTsaid stable. So staying on the same drugs. Scan in April. FF

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Hello Chris
Sorry to hear about poor ladybird ..living with acute pain is miserable for any quality of life ..I had to Google knees bursitus and couldn't really find any magic remedies .
Have you tried something like voltaro rub in cream or even a heat pad to help? I am having hip pain too and have been prescribed liquid morphine ..too be honest paracetamol and ibuprofen do much the same job without the constipation issues !!
Sending hugs xxx
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Morning ladies, it's that man again!
My lovely wife Ladybird is suffering from great pain from her knee. It has been swollen up with Bursitis for three months or more but without pain until this week.
She saw onc on Friday and he has put her forward for bone scan and ct scan but that could take weeks. Had anyone had similar pain? She's on Fulvestrant and Denosumab and nurse comes tomorrow to inject both these at home. She cant walk without help and the pain is awful to see. She has pain patches and other painkillers but can't take ibuprofen because of clash with Lithium.
Any suggestions gratefully received.
Chris x
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Woohoo Jellytot fantastic, I am well jell. Enjoy it, you deserve it.

Paula

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Moijan - there's a lady from my nov14 chemo group who lives in Sweden, she had chemo originally now has bone and lung mets and has just been put on ibrance. Don't you just love NICE?!

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So those of you saying I deserved treats.... We’ve booked a holiday to Mexico and we leave in 20 days!! xx

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FF

i hope your weather improves...what a bu*gr....I think the worlds weather is changing because of what us humans have been doing globally.......and it's scary😱. I don't know what the answer is.....and our b weather has also been affected...... stuff you get often makes its way to us!😨

 

anyway, take good carexx

Moijan💚💚💚

 

 

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Hi Nicky, 

 

you may may be right about Eribulin, but when I started it 15-18 months ago, I wanted a short break and onc said anything up to 6 weeks would be ok, but more than...- I'd lose it. However, Nice have since licensed it differently so you may well be eligible.

 

i recently wrote to Nice about Ibrance because they have only licensed it for those mets ladies who have not ever had chemo...they said it was because there is no evidence that it works for the  group who have had prior chemo......there is no evidence for that group because the trials didn't include that group..,.i get so p'd off hearing stuff like that, because in the USA ladies in that group get it....and some do respond!

 

so in the Uk those of us in that group have been hung out to dry!

 Also fulvestrant (which I am now on)has been shown/there IS evidence for...to work even better jointly with Ibrance - so when that fails...I will always wonder if it might not have failed if I was on ibrance as well.

 

Moijanx

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Nicky, I could go back to abraxane bc they stopped it bc of harsh side effects, but it was still working. I'd p refer to stay away from it unless I'm desperately. I do know that you can revisit a drug if it failed many years ago. Just not sure how many. No, guarantee that it will work again. We are never guaranteed that though! Lots to talk about with my oncologist tomorrow, if I get there tomorrow. We are expectlng an ice storm over night. If that happens I won't be going. I drive in snow but not ice!  

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Hi Nicky, thank you very much for getting back to me, I appreciate it. Long may your hormonal treatment work well for you, Kxx

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Hi ladies.

Firstly Kate. I had chemo (FEC) back in 2008 on my secondary dx. This was probably the wrong choice for me as I ended up afterwards with severe heart problems which later on caused me no end of problems. However my option was chemo or hormonal and I was so scared of it all spreading (I also had a local recurrence) that I wanted to blast it. Anyway it did blast it! I then went on to having nearly 5 years of stability on anastrozole, a hormonal treatment, plus of coursebone strengtheners. After that, and a liver mets do to add to the mix, I had capecitabine which worked for about 18 months, in which time I got my heart issues sorted out. A biopsy of my liver had shown I was now HER2+  (having been HER2- up until then) so I went onto Herceptin based treatments, as well as letrozole (after the chemo elements were completed) . This was a bit of a red herring as it turns out I’m only weaklyHER2+ and therefore haven’t benefitted really from those treatments, other than the chemo part and the follow on hormonal which I have responded to well. So now I’m back on hormonal, aromasin/exemestane and will have to see how long that works for! I am well aware I am getting through the treatment options and so far haven’t re-visited any treatments (in answer to FF) which I suppose is possible especially ones that haven’t failed as such. In the time I’ve had all these treatments, which seems a long list, I haven’t been hugely affected by SEs, luckily, and I don’t think if anyone had told me 10 years ago that I would be ‘happy’ to put myself through them that I would have said that I would. However you do what you have to do and so far I have responded well to each treatment (other than the Herceptin side of things which did b*gger all!).

FF- as I’ve just said above I haven’t revisited any treatments but I do know vinorelbine would be on the cards for me as a treatment I haven’t had. In theory I could re visit Eribulin, which was the last chemo I was on, as it didn’t stop working I was just advised to give my body (notably my bone marrow) a rest from chemo. However in the UK we have a governing body (NICE) for our health service which advises which treatments you can have for free and they have strict criteria so the fact that I have had it may mean I can’t have it again as I may not fit the criteria.

Nicky x

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Thanks ladies for all the info! Oncologist this Monday, Cardiologist the following Monday. Will try to get into the dentist somehow. Lol I was trying to get most of this accomplished before my granddaughter arrived. Instead I'm getting it all squeezed in with her here. Plus seem to be running out every day in this bitter cold. I've also been making my appoingments for 8:00 in the morning bc I go to work at 1 in the afternoon. Feeling overwhelmed at the moment, but I need to get this all out of the way. I figure I'm still going to need a bone density, and echo cardiogram. I wouldn't be surprised if I need a stent. I was told 6 years ago that I had a tumor processing on an artery and no one has said another word. Probably will need more than one centrist appointment, I never get out of the dentist without a problem. I decided I will hope to have all this accomplished by March. I was shooting for Feb. but I'm going to drive myself crazy with appoingments.

 

Nicky, Yahoo for 10 years! I'm my oncologist longest living patient at the moment with bc mets. I wish t h sir were others with more years to give me more hope. A few years ago on "bcmets.org" there was a lady with 18 years. She has since passed. I'm at 12 and kinda back to scared.  Have you ever revisited a treatment? I was going to talk to my onc when I need to change drugs again if I can revisit vinorelbine. It's been 6 years since I took it, but it had worked for 5 years. It was a very easy drug for me. I know that after a while you can try a drug again and sometimes it works. I don't expect 5 years out of it again, but sometime would be nice. FF

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Yep. You long term ladies are an inspiration to us all. Hope I can "pay it forward" in the future to help others like you have helped us.

Zeledronic Acid infusion starts Wednesday, subject to Tuesday's dental check up!

x
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Nicky, I guess you know how inspiring it is to hear how long you have secondary mets. Thanks.
🤗🤗💕💕🤗🤗
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Hi Nicky, can I ask have you been on treatment throughout this time, and what are you on now? I’m almost two and a half years in and find posts like yours inspiring. I went from being told ‘we really don’t think there’s anything wrong with you but we’ll do a mammo and node biopsy anyway as your here’ (I had been saying I could feel something in my axilla for years, had previous mammo and ultrasound, all clear) to going back for the results a week later and being told I had cancer which had spread and was most likely stage 4. My mammo still didn’t show anything and my primary hasn’t been found but all tests confirm it is breast. (Yes, I definitely have cancer as I received a message saying how lucky I was that I didn’t). Started Letrozole/Denosumab and luckily have coped well and my follow up scan was good, but know there is a lifespan to the drugs and appreciate this regime is letting me off lightly! I have spoken with my Onc about what would happen next and was told there would be a couple of options, one being similar but not as easy to take, but didn’t elaborate and I left it at that. While I read stories of being on this type of treatment for longer, I’m also aware that around 3 years is the average, I do appreciate we’re all different and so many factors need to be considered when treatment plans are devised. Thanks, Kxx

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Re: Bone mets - please join in

Hi FF

I have had all 3 of the different types of bone strengtheners. Firstly I was on pamidronate which is pretty old school and was an IV every 3 weeks. This was OK whilst I was having 3 weekly chemo, back in 2008, but became a drag going to the hospital every 3 weeks once the chemo had finished. I asked to go on to the oral form, which I did for several years until my bone mets spread. It is a pain in the butt and, as Janette has said, with lots of restrictions but for me it meant I could keep away from hospital for as long as possible (my other mets treatment at the time was anastrozole/Arimidex). It also caused a lot of wind - luckily of the burping variety but annoying and uncomfortable all the same. Most of us in the UK are now on Denosumab/Xgeva which is a subcutaneous injection given anything from 4 weekly to 6-8 weekly and in my experience of all 3 it is the one with the least side effects and the least impact on my life style. A quick minute or two on the ward then out. In fact I know of one lady in the UK is allowed to give it herself but the rest of us seem to have to have it administered by a nurse as they wont let it out of their sight as it’s quite expensive. It is the newest drug and therefore the most expensive however when you take into consideration the cost of setting up an IV, nurse time and bed/seat space on a ward I don’t expect the overall cost is any more than the IV drugs.

Hope this helps

Nicky x

ps glad all of us old timers have been able to reassure some of the newbies. I’m now coming up to my 10 anniversary of secondaries and although have had lots of different treatments over the years I’m still currently free of pain and carrying on doing as much as I can, a bit more tired maybe but that comes with age as well. Xx

 

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Re: Bone mets - please join in

Hi Funnyface, I can only speak from my experience with Denosumab but I would definitely advise getting any dental work done before starting, if you need any. I had to have some done after, followed all the guidelines but had some problems. I agree that the actual Denosumab injections are easy enough to have. Hope all goes well whichever one you have, Kxx