68388members
359826posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Highlighted
Member

Re: Bone mets - please join in

Denosumab has turned me into the iron lady. Yesterday I was out putting up posters for the village panto when I fell over (or as it's called when you reach my age, 'Had a Fall'). As my chin hit the tarmac I thought 'Goodbye denosumab' but no, everything seems to be OK apart from bruises and scrapes. There may be a few questions today about the state of my face. The panto is called 'Beans' and is on the 27th and 28th at Blackawton Village Hall.

Love to all particularly those waiting for results. B xxx

Highlighted
Member

Re: Bone mets - please join in

Hi mavis like you ive been watching trying to pluck up the courage to write something. Ive had bone mets since i was diognosed in 2014. What did you want to know. Take reassurance that there are a lot if drugs out there to keep this disease at a slow pace. Its nice to know others out there understand how your feeling. Keep positive and strong mavis. This looks to be a very nice group of ladies. Sue
Highlighted
Member

Re: Bone mets - please join in

FF, brilliant news.

I do try to follow this tghread regularly but its sometimes so bsy i lose track so apologies to anyone i could have responded to and havent. Best wishes to all, especially those witing for scans/results. x

Highlighted
Member

Re: Bone mets - please join in

Hello FF
I did wander about posting marirose passing here on this thread but she was so well loved I wanted to get to as many regulars as possible as its a busy place with lots of readers .
Anyway ..marirose would be wanting us to pull on our big girl pants and carry on with life etc.
Carolyn xxxxx
Highlighted
Community Champion

Re: Bone mets - please join in

Thanks ladies! It was very hard to post about being happy, when we are all so upset over Marirose! I decided she would want me to be happy and post. We carry their torches with us!

 

Nicky, I don't know about you but I hate having to adjust and find the new normal! Why can't we just be normal!Smiley Tongue Whatever normal is!

Highlighted
Member

Re: Bone mets - please join in

Hello there!
I already posted it elsewhere, but I also had immunotherapy at Hallwang, now more than two years ago. I had breast cancer and i am Male. That is very rare but just as bad. I have been in complete renission for 2 years now, so I can only speak highly about their treatments, they are indivual and unique for every patient.They performed a tumor-associated antigen test and Next Generation Sequencing on my tumor tissue in order to find the best targeted treatment for me, as these tests show genetic modifications or expression of certain surface markers found on cells. So, in your case a totally different expression pattern could show up, which means there is a different medication or vaccine for you. That is what I like about their approach-it is not one drug for all, but really individual-based. 

I also Love that they Know what they do and keep up with research. The doctors there have a profound research background and knows their stuff. I have been to clinics that offer you some Kind of vaccine or so-called immunotherapy without understanding the rationale behind it. I also recommend getting Information from Hallwang Facebook site, they are actually the only clinic i Know that posts real scientific data from ongoing trials and not some opinions or weird data of unkown origin.

So I can only recommend the clinic to you!

Highlighted
Member

Re: Bone mets - please join in

Hello Nicky, sorry to hear you are so tired on Kadcyla - I hope you can "get used to it" like you did on Cape. I know nothing to do with chemo is easy, but, as long as we don't have severe se's, we all tend to accept the little things as the new normal - I hope it gets to that stage for you but is still effective.

 

Good luck to all who are having tests, results, se's, and just generally struggling with things.

 

Hugs to all. Barton.x

Highlighted
Member

Re: Bone mets - please join in

Wow, ff, that is excellent news! One less thing for you to worry about. Brilliant!

 

Hugs. Barton.x

Highlighted
Member

Re: Bone mets - please join in

Just wanted to say "so happy for you FF!" Free treatment for a year must be such a relief, long may it continue to be effective for you.

Nicky, I'm thinking about you and everyone having new scans and treatments, wishing you strength and positivity.

Carolyn, it's so hard when a good friend on here passes away, it makes me feel sad and I'm not a regular poster like you. I'm in awe of all the community champions giving so much of their emotional strength to supporting people on the forum, it can't be easy and you do a fantastic job xxx

Highlighted
Member

Re: Bone mets - please join in

Hello ladies
Well first of all FF ..what wonderful news for you but gosh what stress it caused you.
Nicky ..I hope you are feeling better too with kadcyla ...probably settle down with time when your body adjusts ...you know you had years of h and p in the system and then a new one so your body is confused!!
I'm afraid I got very upset over loosing marirose ..she had always been there and replying to us ..but went hospital yesterday for bone juice, lots of waiting around and chatting to other ladies who were really strong and positive with their dx .so I have given myself a kick up the rear end and back to real world again.
Met my new oncologist who looks about 12 but suppose we all think like that as we get older !!
Carolyn xx
Highlighted
Community Champion

Re: Bone mets - please join in

Hey FF, that's brilliant news. I've been following your tale about all the forms and how much strain financially and mentally this is for you - but not having the energy to reply! What a relief especially as it's been so effective for you - long may it continue.

Thanks Janette, Helen and FF for your kind words. I must admit it has surprised me how cr*p I feel! I chat to another lady on the chemo ward who has been having this for well over a year so had expected to feel just like she does - a bit tired for a day or two then up we get again! I'm hoping it might be a bit like starting on Capecitabine all those years ago when I felt rotten the first few cycles and then tolerated it very well- other than the usual hand/feet soreness. I live in hope!

Nicky x

ps Good luck with the MRI Helen, all very confusing - I know what you mean. I'm having another liver biopsy done next week to see if the little critters have changed sides again! Not looking forward to it but it will give a more up to date picture of what's going on - the last one being in 2013. See you later this month x

Highlighted
Member

Re: Bone mets - please join in

Oh FF, that's fantastic news! Really pleased for you.

Hi Nicky, hope the kadcyla s/e get easier for you, I know my friend had been on it for 6 years now and copes quite well but she has said the fatigue is the the worst.
Well no snow here yet.....hope we don't get any!
Hugs Janette xxx
Highlighted
Community Champion

Re: Bone mets - please join in

Hi Girls, A bit of good news! I was approved by the manufacturer of penicillin (ibrance) to get my drug free for one year! They said first they will give my name to a company to see if they can find a grant for my copay. If that isn't found then Pfizer will assist me! They said either way I will pay nothing and its good til the end of the year! I don't know what  would happen if some how it is still working at the end of the year r! Will deal with that next year if I need to! FF

Highlighted
Community Champion

Re: Bone mets - please join in

Helen44, Hoping all goes well and you can have the surgery!! 

 

Nicky, feel better soon!

Highlighted
Member

Re: Bone mets - please join in

Very sad to hear the news of Marirose, another lovely lady taken too early. Xx

Hi Nicky,
Sorry to read your post about the Kadcyla side effects, hope things improve soon for you. Facing an MRI on Friday to see if liver met is suitable for surgical removal -I am very confused at the moment and anxious that Kadcyla isn't working for me. Will keep you updated, hope to see you later this month xx

Thinking of all you lovely ladies and wish I could wave a magic wand over us all and make this b******d disease disappear xx
Highlighted
Community Champion

Re: Bone mets - please join in

What an awful shock to hear about Marirose. Like many of us I had no idea she was so ill. My thoughts are with her family and friends at this sad time. Thank you Carolyn for letting us know.

I have been a bit more absent of late as I struggle with the after effects of my Kadcyla treatment. Having naively imagined it not to be as debilitating as many chemo's I have been absolutely washed out by it this time around, sleeping for about two days! Very unlike me who can't even fall asleep in a chair! Hopefully things will improve as they did for the last cycle and I can be more active on here.

Nicky x

Highlighted
Member

Re: Bone mets - please join in

Also shocked and saddened to read the post about Marirose....she was one of those amazing ladies that gave so much advice and support whilst making very light of her own health. Fly high dear Marirose, you will be sadly missed. Condolences to her family and friends xx 

Highlighted
Community Champion

Re: Bone mets - please join in

Wow, I didn't know Marirose was that I'll! Quite shocked! She was a kind lady always helping everyone. RIP...Hugs and love FF

Highlighted
Member

Re: Bone mets - please join in

I am so sad to read the sad news of Marirose. She was so kind to me and often PM when she knew I wasn't well. This kind , caring , funny lady will be very much missed . Oh Marirose , we never met , but I feel we jad become good friends. My thoughts are with her family  . M xxxxxx

Highlighted
Member

Re: Bone mets - please join in

Julie, like you I hadn't realised Marirose had become so ill, a real shocker to hear this sad news!
Hugs Janette xx
Highlighted
Community Champion

Re: Bone mets - please join in

On no!! I didn't realise Marirose had become so ill. She was a lovely, warm, caring woman and will be greatly missed. I'm very sad to hear of her passing

Highlighted
Member

Re: Bone mets - please join in

Well, a real shock.

 

Marirose was such a support to everyone, across the threads. In tears of course. But she has her well deserved wings now. I'll miss you, Marirose. Fly high.

 

mo           (((((((((((((xxxxxxxxx))))))))))

Highlighted
Member

Re: Bone mets - please join in

Thanks for letting us know Carolyn.
That is so sad to read RIP Marirose, my thoughts are with her family.
Hugs Janette xx
Highlighted
Member

Re: Bone mets - please join in

Hello ladies
Just in case you haven't read the message from Bonita ..our lovely community champion Marirose passed away this morning .
She was so kind and supportive to a lot of us here ..we will really miss her .
Rip ..lovely marirose.
Xxxxx
Highlighted
Member

Re: Bone mets - please join in

Hello Lesley, so glad you have the all-clear! It's great reading news like that! And don't worry, cry if you need to - I can understand how the relief can be overwhelming!

 

This site is what keeps many of us going - we all appreciate all the support and uplifting stories, and even the shared tears.

 

I do hope you never need this section of the Forum again, but if you do, know that we are here for you (and anyone else).

 

Hugs. Barton.x

 

Highlighted
Member

Re: Bone mets - please join in

Hi Carolyn

I too have very difficult veins, even before cancer I was thrown out of blood donors for being too slow! When recently admitted to hospital they ended up doing a femoral stab to get blood out of me, that was after they had used my arm as a pincushion.  The technician who attempted to put a canula in my hand for the CT scan recomended not eating any carbs for two days before and then on the day eating lots of carbs to plump up the veins.  I had never heard this before and haven't yet tried it but it may be worth having a go.

 

Sandra x

Highlighted
Community Champion

Re: Bone mets - please join in

Hi Fudgepot,

 

Just a quick one to hopefully continue to give you hope and positivity.

 

I  was dx with bone mets nearly 11 years after primary. They are quite extensive : ribs, spine, sacrum ....My Onc gave me a zap of radiotherapy because one tumour was very close to spinal canal and also a zap for pain. Then I  went on to Letrozole (Femera). I  did question my Onc and ask for second opinion as I  felt it wasn't aggressive enough treatment. They confirmed my Oncs choice was good for me and I  have been on bonejuice and letrozole and am stable with no significant spread over six years on. So you can see hormones can be very effective. We have several members who have lived for many years with bone mets. Dawn is one of our lovely ladies and has been living with SBC for around 14 years.

 

There is a term for those with just one met but can't remember it at the mo. However, it does appear that often if you have only one or two mets it often stays that way.

 

Highlighted
Member

Re: Bone mets - please join in

Hello Lyndsay
No problem ..have Mets to femur, hips, pelvis and spine ....waiting for new scan but my last one was showing stable and bones repairing with denosumab ...at dx Oct 2015 I had a hole in femur and had to have emergency surgery to put a pin in to stabilise it and hip. I walk with a stick but can still manage a good rummage in the Next sale !!!
The word lesion is a scary one but doesn't mean cancer ..it can be arthritus or any old injury but shows on scans as suspicious .
Try not to worry too much as it sounds very small. The hormonal pills take six weeks to kick in and then they should in theory stop feeding the oestrogen that is activating any cancer cells so they die ... that's what my oncologist said so I try to feel positive . I think of the hormone pill being Rambo ..killing all the baddies in the bones !! Silly really.
Carolyn xxx
Highlighted
Member

Re: Bone mets - please join in

P.S - Thankyou everybody else for your replies - you are all so kind!

Lyndsay xxx

Highlighted
Member

Re: Bone mets - please join in

Hi Carolyn  - thankyou for your reply - you are so helpful.  May I ask (if it's not prying too much) - what bone mets do you have and have they progressed since your diagnosis in 2015 or are they still the same.  Mine is a small lesion on my spine.  It showed up as suspicious, but not definite on a PET/CT scan.  I was then sent for a bone scan, but even that didn't confirm it as a bone met 100%.  My onc said the only way to definitely know what it is, would be to do a biopsy, which he felt would be too invasive. He says he is 95% sure that it is a bone met, so is treating it as such.  

Highlighted
Member

Re: Bone mets - please join in

Hello Lyndsay
I have had bone Mets since dx October 2015 and my oncologist doesn't do tumour markers either. He says the same as yours does ...scans, blood test and any new pains I tell him about give a more realistic picture.
I think he said ( not sure ) that they arnt much use for bone Mets .
Hope this puts your mind at rest.
Carolyn xxx
Highlighted
Member

Re: Bone mets - please join in

Hi all

 

Not sure if this fits in here, but was hoping somebody would have some knowledge about this.  When I saw my oncologist last week - I asked how I was going to be monitored and would they be measuring tumour markers - he said he didn't do them and said tumour markers often gave false readings and were not really appropriate for breast cancer and that he would be measuring my progress through scans - has anybody got any knowledge views on this?

 

Lyndsay xx

Highlighted
Member

Re: Bone mets - please join in

Hello ladies
Well nurse has just been and took blood ready for bone juice jab tomorrow but only just got a dribble out of my last vein. Says will have to use back of hand from now on.
I always drink a pint of water and warm up vein before she arrives but is there anything I can do to help it along ..its such a pain when u can only use one arm ...the other one is bulging with blood but obviously a no no.
Carolyn xxxx
Highlighted
Member

Re: Bone mets - please join in

Hello Lyndsay
I was diagnosed with bone mets just 8 weeks after my primary diagnosis - that was in 2012.
I also had shadows in my peritoneal area which the onc said was probably cancer.
I was put on letrozole which is a hormone treatment.
Like you I was anxious and asked why I couldn't have chemo which I thought would be more aggressive and could put me into remission- the Onc said that he would save chemo for -"sometime down the line should it prove necessary"-
Since then my bone mets are hardly noticeable and the shadows in my peritoneal area are -"no longer visible"-

So in effect there is no evidence of the disease....I have had neither chemo or radiotherapy.

Letrozole and anastrozole are very similar treatments.

Highlighted
Member

Re: Bone mets - please join in

Hi Lyndsay, latest research shows that small mets can be cured, it's when it's more extensive that more problems can arise. 

Best wishes xx 

Highlighted
Member

Re: Bone mets - please join in

Phew Lyndsay ...I think you will have to think about all the kitchen crockery as its gone up in price in 21 years !!
The one thing I have learnt by being on this website that everyone's cancer is unique and everyone responds to treatment differently .
Some chemos work well for some and some don't ..the same as hormonal pills ..some ladies keep their Mets under control for years with them ...some don't so it's how long is a bit of string really!!
The oncologist will be scanning you and doing monthly blood tests and possibly tumour markers which then give a good picture of what is happening .
The anastrazole you have been prescribed is a good one and I can only say that I had a good friend ..she was dx with breast cancer at age 70 but had heart problems so surgery wasent an option ...she took one little pill a day and her bc never progressed and she died age 88 with a heart attack !!
Carolyn xxxx
Highlighted
Member

Re: Bone mets - please join in

Thankyou Jeanette and Carolyn for your kind words of support.   I am finding it difficult to come to terms with my new diagnosis.  When I was originally diagnosed all those years ago (aged 39) - I felt I would never feel 'normal' again and had an inner rage within me (I actually broke all the crockery in my kitchen cupboard!) - but I did manage to return to a happy life.  Those negative feelings that I had all those years ago have returned and I don't know how to cope with them - does it get easier with time?   On the subject of bone mets - is there always progression to mets in multiple sites of the body and then into the organs or has anybody had a small bone lesion stopped and controlled with no further spread.

 

Lyndsay

Highlighted
Member

Re: Bone mets - please join in

Hi Lindsay, sorry to hear that you have have been dx with mets after all this time, it's a terrible shock! Mine returned in 2014 after 7 years clear, primary was only grade 1 had lumpectomy and radio, didn't need chemo and was told I had 95%chance of it never returning!....didn't even know you could get it in your bones!
Anyway, denosumab, I've been on it almost 3 years now and suffer no side effects from it, I do get very tired but don't know if that's down to the letrozole, denosumab, zoladex injections, cancer or a combination of them all????
Like you I thought I would be put straight on chemo and when I questioned this my onc told me that would be used later when other options run out?? It might not seem like much treatment is being given but those little tablets can be mighty powerful!
Hope this helps, good luck.
Hugs Janette xx
Highlighted
Member

Re: Bone mets - please join in

Hello Lyndsay
Welcome ..it's all a bit too much to deal with especially after 21 years when you kind of forget about bc but for a few of us ..it comes back to bite us on the bum !!
The treatment plan sounds normal and hormone treatments can work and keep the little Mets under control for a long time so a oncologist would prefer to keep the big guns chemo stuff in reserve rather than hit you with it at onset .
Denosumab injections are a quick monthly jab in the tummy ..easy peasy and most ladies here have no problem at all. The only worry is the jaw problem so you need to get your teeth checked out as extractions and invasive dentist work has to be done very carefully.
The adcal calcium tablets are easy to tolerate especially if you get lemon flavour like I get.
I think you have to trust the oncologist to prescribe the best treatment plan and yours is the first attack at it all.
There are loads of different threads here for support and advice ..also maybe join our private forum and join in with games, book club and gardening etc to focus away from the stress!
Carolyn xxxx
Highlighted
Member

Re: Bone mets - please join in

Hi,  I have recently found out that my breast cancer has spread - I found a lump under my arm - it was biopsed and tested positive, then a scan found a small lesion on my spine.  I have been prescribed anastrozole and a calcium tablet plus monthly injections of Denosumab.  I have heard that Denosumab can have horrific side effects - can anybody put my mind at rest.  My Primary cancer was diagnosed 21 years ago and I have had no problems up until now - so as you can imagine this has come as a terrific shock to me.  Is the treatment that I have been prescribed the best on offer - I would have liked to have been given a more agressive treatment such as chemo and radiotherapy to give me a better chance of going into remission.  My oncologist told me that anastrozole can cure bone mets - I thought only radiotherapy or chemotherapy could do this.  I am thinking about going for a second opinion - has anyone else sought one and how do you go about it.

 

Lyndsay

Highlighted
Member

Re: Bone mets - please join in

Hi Carolyn,Thankyou so so much for your reply what a wonderful lady your are, I actually feel like I know you because I remember when I was reading posts a about the cold cap reading your reviews about how it takes 3months to grow a fringe!! Lol ..i did do the coldcap and just kept a short covering of hair but it's something but I have to wear a wig at the moment I don't think iv had any new growth yet but to be honest iv been so stressed out I'm not surprised! I will keep in touch with this thread now carolyn but maybe I need to just relax a bit now and try to get back to some normality, I think I found it so hard as well because I thought that once all my treatment was finished I could looks forward to getting back to some kind of normality I.e hair growing back to work etc but it didn't  happen with all this going on! and all xmas and new year it was all I could think about and I hadn't said a word to anyone about it except my oh.

i will keep in touch and such a big Thankyou to you all again...p.s. Bet youv got loads of local hair now!!

lots of love Lesley xxxxx

Highlighted
Member

Re: Bone mets - please join in

Hello Lesley
First of all ..we are all sending a whoop whoop to you and the good news ...you were very wise to get it all checked out for peace of mind so you can now get back into a normal life again ....move on from it all as the more u worry over every pain and ache ..the more your stress levels will convince you of something sinister !!
The survival rates are now so much better as more scans are done at source at primary stage ...my secondaries came back after eleven very healthy years but in 2004 ..it was surgery, chemo and rads ..five years tamox and then after five years discharged from the system ...I think I read sonewhere that now after five years they do a final bone/ ct scan to ensure you are clear.
So....stay with us but don't spend all your time worrying about reaccurence ..we are just a small group of unlucky ones !!
Carolyn xxxx
Highlighted
Member

Re: Bone mets - please join in

Hello everyone, this is my first time on this particular thread but felt I needed to come on and tell you my story, after weeks spent reading all your fantastic wonderful heart felt posts.

i was diagnosed with stage 2 bc and 3 lymph nodes involved.

I had mx/ chemo / radio through finished all my treatment on dec 16th.....however, two weeks after finishing chemo I started with bad lower back ache, went to docs she gave me painkillers and said if doesn't settle down to go back incase it had spread to my bones!!! I was terrified i had no idea that this could even happen until I came across this site. Anyway my back didn't settle so I went back to docs who said to have bone scan to check, I cannot describe how terrified I have felt over this last seven weeks not been bake to eat sleep or concentrate on anything and I know you ladies will all identify with these feeling, anyway my wonderful chemo nurse rang me today and told me all clear no sign of cancer whatsoever and all the pain seems to be from my hip area which shows arthristis which I need to see my doctor about.

I now can't stop crying! the stress and anxiety iv been suffering have been nothing like iv ever felt before!  and again I know you ladies know it all too well!! but I just wanted to say I will keep coming onto this sight and reading your wonderful stories of inspiration and to Thankyou for all the positive stories all of which have held me together these last couple of months .

With love to you all and I wish us all many many more years together ..love Lesley xxxx

Highlighted
Member

Re: Bone mets - please join in

Stillhere - glad you are safe in your trial!

 

Stacey - you've probably lost your WiFi by now, but wishing you good luck with your move. I hope everything goes well for you. Sorry to hear about your husband. I hope everything goes well when you get to your new home, and hope you get some good times with your sister (there is nothing like having a sister close by, is there?).

 

Hugs to all. Barton.x

Highlighted
Member

Re: Bone mets - please join in

Oh FF, you poor thing! No wonder you have been quiet - you have had an awful lot to deal with! So sorry you are having such trouble with your funding - it must be a nightmare. At leadt we don't have to worry abput chasing medical insurance companies over here (unless you have private health care insurance - I don't), but we get the other problem of the NHS/NICE refusing to pay the massive amounts that the drug companies demand. I know they have had the research expenses, etc, but they do seem to charge extreme amounts!

 

Not only those problems, but all the other troubles you have had - all in one week! You have my sympathy.

 

Hugs, and hope things improve from now on. Barton.x

 

PS- what a wonderful offer from your daughters friend- no wonder you were so touched.

Highlighted
Member

Re: Bone mets - please join in

Hello daisyjane
I'm seeing oncologist this week and he will say " any progress in aches and pains" and I just don't know ..what with denosumab , letrozole and damp weather which all causes aches and pains ..I have no idea what is happening and would hope that with all the medical technology ..they will be able to tell me whether I have progress !!
Anyway ..better get the thermals out ..it's going to get colder this week !
Carolyn xxx
Highlighted
Member

Re: Bone mets - please join in

Here here Carolyn.  I thoroughly agree.  Ive not been on the forum for a while.  Just been trying not to give the 'condition' anymore air time than absolutely necessary but this cold, wet, damp weather is playing havoc with my bones too.  My shoulders and neck are horrendous but I know as soon as the weather turns and the sun comes out then all the aches will disappear again.  Roll on Spring eh? Xx

Highlighted
Member

Re: Bone mets - please join in

Hello bone Mets ladies
Forget expensive drugs ..think what we need in the uk is bottled sunshine and warmth ..sure this cold and wet weather lately is making my bones ache and creak more! Ive even started doing the ooh and aagh thing getting up from the sofa ( u all know that sound as men do it when you ask them to get up and make a cuppa during their favourite football match or something!)
So ..sunshine and warmth please so we can become like Duracell bunnies again !!
Carolyn xx🐰🐰🐰
Highlighted
Community Champion

Re: Bone mets - please join in

Glad you aren't worried any more about your situation Stillhere! Extra worry is exhausting ! I told myself that in 2017 I wanted to let go of things easier and not worry so much. (Even if I have to drink wine to do it) guess I better pop the cork!!!! I feel this way...there is enough money in this world that no one should be suffering by doing without shelter, food or medical supplies! It's crazy! Every time they advertise a drug on TV as some miracle help for any illness, I tell my husband it must cost an arm and a leg or they wouldn't be advertising it!!

Highlighted
Member

Re: Bone mets - please join in

Hi FF,

 

I grew up on Long Island, last lived in CT before moving to the UK.  

 

I am moving to be near my sister on Long Island; about 30 minutes from Manhattan by train.  In fact, I'm buying a house that is only 3 away from my sister's home.   She's been in very poor health for years, so moving now I've looked at as a "now or never" opportunity.  

 

Packers were here this morning and my wifi leaves this afternoon .... so I'm disappearing for a while!