Bone mets - please join in

[JulieD]

Marirose I'm so pleased the info was useful for you, yes definitely mention it to your MS   nurse, with MS  and SBC you sound like an ideal candidate to me. Fingers crossed xx

[Marirose]

Julie thankyou for the information for the cannabis oil I found it interesting especially as I also have MS I shall be asking my MS nurse next month. I am suffering with pains that are linked to both I was unaware that there is a spray that contains cannabis for MS.Lets hope the N.H.S get their finger out and legalise it.

xxx

[Carolyn52]

Hiya ladies
Short notice but a lady from Facebook secondaries is going to be on itv news at 1.30 and 6pm tonight to be interviewed about afinator ( evorumus) being withdrawn by NICE due to the high cost.
I think maybe a few of you will have had it in times gone by.

[Carolyn52]

Julie
Thanks for that link ..it's very interesting .
Avrelia
Glad you are coping well with the chemo ..it will soon go by ..assume you are having six sessions of chemo.
I seem to be ok (ish) with the aches and pains so haven't needed painkillers or heat pads but haven't overdone things this week as saving energy for weekend when grandkids all here !!
Moijan
Thanks for the advice 're letrozole and great info for the eribulin ladies Sharon and Helen ..I'm sure they will appreciate it ..can't beat info from real people rather than bits of paper !!
Well just going to enjoy a coffee and custard cream biscuit in the real world but will b popping in to the cyber cafe soon ..no calories there !!
Hugs xx

[daisyjane181]

Thank you so much. I pray too that it continues. Xx

[avrelia]

Hello, hello, just before going to my second chemo, had to tell you that I was with my oncologist yesterday for the regular meetings before chemo, blood results are fine, and she thinks that the lumps have become smaller and softer (which i presume is a good sign, only after one cycle of chemo). She will book me an ultrasound in 3 weeks time to confirm though. I asked her if she does not mind me going on holiday, she said that it is not recommened for anyone on chemo, but after all we agreed that I may go. Why is that so, because of possible SE?!! I am not that type of person to lie on my back and wait for them to happen... Anyway, I have to by compressive stockings above the knee as she told me, and walk around during the flight, before and after...(3 hours) and drink lots of water. May be that is sensible. Has anyone had a flight between the chemos? How was it if so? Sorry if my questions sound stupid:) 

Carolyn, I am sending to you some positive energy and airlike pain killers, breathe deeply and hope you will drive them away!!!

[Moijan]

Re Letrozole

ladies, if its working, think seriously before coming  off it...I was told to come off it after about seven years and the cancer came back-Letrozole no longer works.  To be honest Letrozole was so much easier..could go on holiday, leave the country etc, now im tied to a cannula two weeks out of three, and my veins are hard to find!

honestly, weigh up your own pros and cons before stopping, as the bc will get resistant. I also found that Novartis original version had far less side effects than all the other versions.

love and Hugs

Moijanxx

[JulieD]

For those interested in the cannabis oil I cam accross this article (if I  can get the link to paste here)

http://www.independent.co.uk/news/uk/medipen-the-nhs-are-testing-a-cannabis-product-vaporiser-for-th...

There is hope yet that the NHS  might one day provide access

[Carolyn52]

Jeanette
Glad yr headaches have been better and its a nightmare having to chase all the time.
It's been nice here but we have rain and thunder forecast for later.
Well it's day 8 since denosumab jab and I'm not aching too bad despite stocking up on heat pads, deep heat ( well it's the one beginning with v but cant spell it) and ibruprufen. .fingers crossed ...maybe its all the choc and McDonalds helping ...ha ha.
Xxx

[rosie53]

Hi Carolyn, still not heard back from bcn! Which doesn't surprise me to be honest as she has an habit of that. She usually sees her in clinic on a Thursday so will see if I hear from her tomorrow, as it happens head has been okay since Friday so hoping it's just something and nothing. 

Well it is glorious here in the usually rainy manchester 😎 Hope everyone is enjoying the sunshine and keeping well. 

Hugs Janette xxxx 

[Carolyn52]

Hello Sharon
Nice to hear from you ..I get all the c hemos muddled but I think moijan that posts here regularly is on that one too. Hopefully she will give you some info.
Sounds like a good one if you have to get approval for the expense.
Fingers crossed ..isn't it a pity that ibrance isn't available as in the us ..it's getting very good results ..
Hugs ..nice to hear from you.
Xx

[scratch]

Carolyn cant really say about cannabis oil as only started taking it two weeks ago..xx..dont think Il take it on chemo.x

[scratch]

Hi Carolyn iv had very slight progression in my liver Mets.so taken off the exemestane..which lasted about 4months....and obviously didn't work..next plan is oncologist applying to drug fund to get erubulin....which will take about three weeks..any advice anyone on this drug.i won't be have a 100%dose......well got three or four weeks grace....take care sharonx

[Carolyn52]

Good morning all
The Sun is shining and its gorgeous here ..just what Sumner is all about.
Are you ok Sharon ? You haven't posted for a few days ..how is the cannisbis oil working ..do you feel better for it .
Jeanette ..have you heard from your bcn about your headaches ?
Well I was a lady that lunched yesterday ..three hour catch up with my daughter which was nice .
Hope everyone is ok
Xxx

[Carolyn52]

Hiya ff
It's hard to know whether the constipated duck walk is the Mets, letrozole or denosumab but needs must!
Xx

[funnyface]

 Carolyn, I lost my hair with primary and hated it....wore my wig all the time. Then I lost it with the Mets in abraxane and said who cares. I very seldom wore my wig. I seriously wore hankies tied on my head. It was summer and couldn't stand the wig! I will probably lose it forever next time lose it. I think I've used all the chemos that don't usually cause hair loss. Yes, I honestly feel worse on this letrozole. I hurt that bad! Plus I can't believe how it's wrecked my muscles for doing steps.  There is another lady on bcmets.org that is having the same problem. I think she is finished with it, but is in physical therapy trying to learn to do steps. I also googled about the leg problems and letrozole . I couldn't believe how many people were complaining of leg issues. I'm nit willing to give up this life line though. FF

[Carolyn52]

Ff. Can't believe that there are more se from letrozole than chemo ..you should know as you must be the queen of chemo after all these years!!
It's the hair loss that got me with mine but looking back twelve years ..I was younger and fitter and able to tolerate it better.
Hope u r feeling well at the moment.
Xxx

[funnyface]

Ladies who are worried about chemo side effects, I have had many mire side effects from this letrozole than I did with chemo. I had some SE but never the this much pain. I had a lot of pain from abraxane bug the pain was different. Don't be afraid to try chemo, every one reacts differently.FF

[Barton]

Hello Marie123, glad you are feeling a little better this morning! Hope you continue to improve.

Corey - good luck with your first chemo. I know how nerve wracking it is, but once you get the first one under your belt it will get easier to deal with. Just be aware of any possible se's, but I hope you don't suffer from them.

Avrelia - good luck with your second chemo, and I hope you get to go on holiday!

Carolyn, I hope your bone juice aches subside soon.

Hugs to all. Barton.x

[Marie123]

Good morning ladies,

Just want to say a huge thank you to everyone. Feeling a bit better today. I just need to ' run to the hills ' and lick my wounds and be quiet sometimes  . The thing is I feel well and I am not inpain, which is brilliant, but very shocking when I am told the meds are not working.

What a great bunch you all are.

Hugs to all

Marie xxx

[avrelia]

Hey Corey, do not feel that way, yes, true that chemo is said to cause many side effects but that is not necessarily the case with you, I have had only one cycle up to now, but the only serious effect I had is hair loss, and that was a 100% sure since I am not using the cold cap. I have been diagnosed in the end of june, and have had just chemo up to now, since I had 5 teeth taken out and they told me that they will postpone the bone strengheteners till beginning of September. I have been having aches in my back occasionally since November and they have neither got better nor worse, so we will see how it will go on, different people different treatment plans I guess.. Take care everyone

[avrelia]

Hi everyone, I am about to go to hospital to give some blood before my second chemo. Fingers crossed results are fine since I am planning to go on holiday for 2 weeks, and if something is delayed I will not be able to...But I do think everything is going to be ok;-) Black sea, here we come!!! My hair has almost fallen, it is everywere in the house, I was thinking of cutting it with the razor, but my partner said, NO. He had always liked me with my long hair, anyway, my wig is not ready yet, and now I am wearing something like a scarf, which makes my head really itchy, probably because i Still have some hair though. Do you think if I buy something which is pure cotton it will help. If someone can recommend me a shop or a website that would be great. Bought another wig on ebay, but still trying to identify how to adjust it on my head:) 

[Corey45]

hi everyone, i now have a treatment plan and i will be starting chemo on next monday so feeling i bit uptight as to all the side effects etc. after bone met was diagnosed oncoligist put me on tamoxifen( as i was going for targeted rads to the bone met) .which gave me slight back ache but nothing major that was just 2 weeks ago now he says delay rads and start on  chemo first .(change of plan again) i had to stop tamoxifen so the cancer cells wake up ready for chemo to get them . stopped on friday and i have aches in back again. does any one know if the ache might be down to stopping tamoxifen.  

[stresshead]

Daisyjane..so pleased to hear your scan news...long may it continue!! x

[Carolyn52]

Hiya hollymeg
I think you have been very lucky with exemenstance for six years. I'm on letrozole which is much the same ..I can cope with the constipated duck walk and hair thinning though rather than chemo and would b delighted if it works for that long.
Popped to matalan and got all the school uniform for grandkids today .it's selling out fast ladies. Got grandson McDonalds and really didn't fancy it so just settled for a mcflurry..so saved a few calories !!
Hoping the bone aches don't last too long this time ...I think I'm the only one on the planet having probs with denosumab.
Hugs xx

[rosie53]

Afternoon ladies, what a lovely day! 

Daisyjane, great news!! You are now a member of the "stable Mable" club.

Hi Carolyn, so your also walking like a constipated duck are you? I look like a 90 yr old when I've been sitting /lay for any length of time. I put it down to the letrozole though not the denosumab because it only started when I was switched to them last October, I've been on denosumab since I started off with mets in 2014 and have never had any trouble with them. 

Hugs Janette xxxx 

[hollymeg]

I've been on tamoxifen and now exemestane for about 6 years now. Been on a adcal for years too as have osteopenia too. I've been told I'm staying on exemestane as it's obviously working... is it though? These mets have developed while taking it, that's what I think anyway. Thanks for your support x

[Barton]

Hello Carolyn, sorry to read you are getting your regular bone juice aches! I was hoping you would be getting used to it by now, but obviously your body has other ideas! I do hope they don't go on and on like last time! Take it as easy as you can, but still keep moving around. We don't want you to set like concrete! 

Hugs, and thinking of you. Barton.x

[Barton]

Hello Daisyjane, such good news re your scan results! Excellent! Long may it continue.

Hugs. Barton.x

[Stillhere]

Hi Debbie, so pleased that you had good results from your CT scan! Hope you are out celebrating at this very moment! Take care xx

[Carolyn52]

Hello daisy
The Adcal tablets are fine ..I have fruity ones too..find they keep me regular daily too!
Jultz and Jeanette
Can I join " the constipated duck club" ? Normally I just get creaky wrists but now the last few days I will qualify for this elite club!
As I am day five from bone juice ..probably those helping it along too!! Find my bum sticks out more when walking ..maybe I can balance a glass on it like Kim karadasha!
Anyway good morning ladies ..Sun is shining and hopefully you are all well.
Hugs xxx

[daisyjane181]

Good morning ladies....just wanted to let you know that I went for my first three monthly CT scan and review last week and got the positive news that my bone mets are stable.  This was the news I was so hoping for and I just pray that it continues.  My calcium levels (which apparently were normal to start with!) had dropped slightly, obviously due to the Ibandronic acid (bisphosphonates) so I have been prescribed Ad Cal D3 which are OK as chewable and fruity flavour.  Just have to remember to take it at least four hours after my Ibandronic acid and two hours after eating spinach, etc.  Anybody else on them?  I had a feeling that my levels had dropped as I had a tingling tongue and quite a few aches but you never know what to attribute them to do we?  Anyway I thank god for giving me some positive news at the hospital and I am sending out positive vibes and best wishes to all of you today.  Debbie xx

[JulieD]

Hi hollymeg,

I  too questioned if 'just hormonal' treatment was enough/right for bone mets but that was six years ago and I'm still stable on Letrozole, so yes it's pretty satandard treatment and can work well for a good time Have they moved you on to a different hormone?

I'm on a different bone juice to you, but the risk of ONJ (osteonocrosis of the jaw) is the same. Whilst it is a possibility to get jaw problems the benefits of treatment (as far as I'm concerned) outway the risks, be careful with your oral health, see your dentist regularly and try to avoid having invasive treatment like tooth extractions.

Hope you feel a little less worried. Please ask anything you want, there are no stupid questions, we will do our best to answer xx

[Carolyn52]

Hello hollymeg
Welcome again and found the best thread for bone Mets as its one of the busiest on the website and means you will get plenty of support from ladies that have no much knowledge .
Yes I was dx with bone Mets last October 2015 ( hips, femur, spine and pelvis) and hormonal treatments like letrozole are the normal first line treatment ...some ladies stay stable on them for many years but I think once it moves to liver lungs etc etc ..then you have to do the big guns chemo stuff.
The denosumab injections ( bone juice !) Are monthly to strengthen the bones and prevent fractures . Also you will b taking Adcal calcium tablets I expect ( mine are tutti fruity flavour and rather nice)
You will b scanned regularly to make sure everything is stable etc.
It's scary and we all hope for the magic bullet to be developed soon but in the meantime we have to trust our oncologists to prescribe the right treatment plan.
Once again welcome to the metsers family.
Hugs xxx

[hollymeg]

Hi there, please may I join in. Thanks for the invite Carolyn. I've been diagnosed with mets in my rib near my mx site. Can I ask others if staying on your hormone tablets and having 4 weekly dam??? Injections is normal course of treatment for just bone mets? Sorry don't know the spellings. I was originally diagnosed back in 2009. I'm worried about the jaw rot side effect most. How have you all coped with it? Thanks in advance for any advice you can share x

---

@finty wrote:

I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!

I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....

finty x

---

[Carolyn52]

Glad u will b chasing. Cyprus is lovely and hopefully you will get it all sorted by then.
I decided that with grandson here and eating out more ...to limit my choc but if you insist I will break into a family bar of cadburys. .would b a shame to let the side down.
Eaten so many Magnums this year too ..bit fed up with them now.
Gosh I feel a right heffer lately ....Will b stir frys and smoothies as from September when grandson goes home.
Hugs xx

[rosie53]

Hi Carolyn, they keep coming and going! Don't worry I will be chasing things up but I know my onc doesn't work on Mondays so don't expect to hear anything til Tuesday. We go to Cyprus on the 10th September so I'm hoping to have had it sorted by then! 

Hey why are you resisting chocolate my fellow choco-ohlic?? I have had a magnum ice cream today I will shortly be having my weekly fix of Diary Milk!! Come Mrs don't let the side down!😆

Hugs Janette xxxx 

[Carolyn52]

Jeanette
How are the headaches ? Any better if not chase the bcn again tomorrow.
It's difficult but we don't always want to tell our family things and tend to bottle it all up.
First day today haven't had any chocolate ..think I have the shakes ? Need to attend chocs anonymous " my name is Carolyn and I need choc"
Cut my coffee to one a day too ..phew this is just not on ....
Hugs everyone xxx

[rosie53]

Thank you ladies, hopefully I'm worrying about nothing!
Hugs Janette xxx

[Marirose]

Hi Janette

So sorry you are going through this worrying time but if headaches are bad they need to be checked out I agree with what others have said and I do hope you get the right kind of help. We are all here for you wishing you get some speedy results and peace of mind.

Much love and ((((hugs))))  xxx

[Barton]

Hello Janette, sorry to read you are getting such headaches. I can only echo what everyonecelse has said - see your Onc if you can, at least to settle your mind. As the others have said, there can be lots of other reasons for headaches - stress not the least of them!

Hugs, and thinking of you. Barton.x

[Marie123]

Hi Janette, sorry you are having a bad time. You have done exactly the right thing contacting the nurse. however , our drugs have loads of SE and the headaches could be just a nasty Se. Thinking of you , Hugs M xx

[rosie53]

Morning ladies.

Carolyn yes your right, this forum is brilliant, the support, advice and understanding we all give to each other when needed is priceless! It's wonderful to be able to off load any worries here without having to worry family and friends. I haven't told hubby that I have contacted my bcn about these headaches, he is so supportive and I don't know what I would have done without him these last few years since my dx so hate to worry him... (hopefully unnecessarily) 

Sending all my cyber buddies huge hugs Janette xxxxxxx 

[bonariensis]

I had a CT on my head to begin with but since then it has been MRI scans.Went through a period of feeling dizzy, nauseous and even confused but the MRI scans have shown the tumour in my head as stable so I put the symptoms down to side effects or lack of sleep. Once they started they got worse probably because i was anxious

[julzd]

Don't I know it carolyn I've had five fillings a crown and one taken out its crazy x x x

[Carolyn52]

Jultz.
When I had chemo ( 2004) as soon as I finished spent nearly a year going dentist for fillings and extractions ..it's plays havoc with teeth ...
Xxx

[julzd]

Sharon hope your doing well ❤❤

[julzd]

Thanks Sharon I will try those tablets for joints x x

[julzd]

Hi jannette I've had a headache for a few days and things have been crossing my mind I even woke up at four this morning when I got up my face was swollen and my lip I totally panicked couldn't get an appointment at the doctors so went to the dentist I have an infection in my tooth but my tooth hadn't even been that bad so it could be anything ❤❤❤