Bone mets - please join in

[funnyface]

Maldives, Hi I was hoping with our time difference that you have been for your visit! I was checking to see if you posted before I left for work. I also was thinking of something else for you. My shoulder used to hurt really bad and keeping heat on it constantly was the only thing that helped. This was difficult when I was out and about. I used to take these little hand warmer pouches that construction workers out in their gloves and put one in a long sock. I was able to lay thus over my shoulder under a sweater and no one would see it. They usually last 6 to 8 hours. You can buy them in bulk at one of the warehouse type stores. I was thinking you could put them in gloves and even in the house if yiur face was hurting you could put your gloves in and hold your hands on your face. If you were out and about no one woukd know what you were doing. I will check in later after work. FF

[Barton]

Hello Maldives, you didn't tell us what time your appointment was, so don't know if you have been yet or not. Please let us know how you got on - we are here for you.

I'm glad to hear that the Gabapentin has started to kick in. Hopefully it will fully relieve your pain, but Carolyn swears by heat on her hips when they are painful, so as ff has suggested it might be worth a try.

Hugs. Barton.x

[nicky08]

Hi Maldives

It is always a shock to find out the extent of your bone mets, mine are now well and truly throughout my skeleton! At least you know the cause of the pain in your jaw, but I don't suppose that is any consolation. Sounds like the painkillers are helping and hopefully your oncologist will come up with some other ways to ease your discomfort. I'm not sure if you are already in bone strengtheners but these do help as does any treatment you start that is aimed at attacking the BC. Bone mass can increase which in general helps with the pain.

Good luck for your appointment and keep us posted.

Nicky x

[bonariensis]

 Dear Maldives I'm pleased you pain is easing a bit. Hope your appointment clears things up for you and is reassuring. (Can you explain max fax to the ignorant?) Hugs B xx

[funnyface]

Maldives, Well, I'm happy that the pain killer is already kicking in for you! That has to be a little relief! Take it easy! FF

[Maldives]

Hi girls
Thank you so much for your replys you really are a lovely group abd i feel lucky to have you to talk to.
The pain is settling down and the gabapentin
Is starting to work. Im also using an aromotherapy oil i made up for sinus pain. It seems to be working.
I should have known better looking at scan pics. It wasnt my onc that showed me it was the max fax. I will know more tomorrow when i see my onc. Will keep you updated.
Love and hugs girls. Keep on smiling through this fight.

[LYNDYLOO]

Hi Maldives so sorry to read about the extent of your bone mets. I have never seen any of my scans on screen so I dont know what they would like. Did the onc prepare you before hand for the shock you must have had seeing the scans on screen. Good luck for tomorrow. Linda

[funnyface]

Wow, wow, wow Maldives! I've never seen my bone scan and had no idea how they look. What a shock! What I do know that I found out for me is I can't look at my CT pictures! I thought I was going to throw up the last time the oncologist put them on the screen and showed me how my lungs had changed. It made me sick to see how this demon was taking over my body. That was years ago and I haven't looked since! I can look at someone else's just not mine!  That must have been so upsetting to see! How long has it been between scans? Do you know how they looked last time? I agree you  need to be consistent to get the best results from the pain meds. Don't be afraid to get a pain management team involved. Does heat help? Do they still make heat lamps? Maybe the warmth on your face would help. I'm glad you have an appointment Monday. Hopefully you will get a pain plan in action. I will be thinking of you! I'm so sorry you are in so much pain. You are doing so well at trying to put on a good face. I don't know how you are walking your little doggie. I have a very difficult time walking my daughter's little dog in our yard. She is only 17 pounds and has pulled me right over to the ground. My knees can't take the tugging. You take care of you! Good luck tomorrow! Gentle Hugs! FF

[stresshead]

Maldives, my heart goes ot to you. Its such a shock to actually see this b88888 disease on scans etc. I have been worried about neck and head pain for a while but scan shows neck ok so assume its all linked to the spread of skin mets on my back. I just hope your onc gets you sorted quickly. regarding pain relief, i have only had oramorph but i do know that amytriptalene (an antidepresant) is used in small doses to help nerve pain.It may be an option to explore. I hope you get some relief soon. Lots of love. x

[Moijan]

Aaah Maldives, so very sorry about all your pain and the scan results xxx 

i wish I could offer some information or ideas which might help. However from what Barton says it sounds as if Gabapentin is a really good drug and hopefully that will ease your mind.

re the scans, the only thing I have to offer is that I too have these bone scans every now and then...my onc has said things  like. ' .well there is shadow here which might be cancer or not...its hard to tell'

I do have spinal mets but there are loads of other black shadows....most of which are unlikely to be mets...my knees are shot from  lifting patients, I also have patches of calcium loss...one orthopaedic  cons, said 'that bone is worn out'.     apparently its very hard to pinpoint all of it to cancer! 

so hopefully..in your case too...not all the black bits are cancer. Xx

it must have been a big shock, all of this, hopefully you will see a U turn soon.

keep posting...let us know how you are xx

Moijanxx

[Barton]

Oh, Maldives, I am so sorry to read about the extent of your mets! No wonder you have been suffering! Hopefully your Onc can sort you out with a new treatment when you see him/her tomorrow.

Re your question about Gabapentin - yes, I have been on it. I had spinal compression fractures at the end of 2015, and it was one of the tablets they prescribed. In the end, I was just taking that as the other - morphine based ones - made me constipated (causing more problems!) and sick. I found the Gabapentin worked quite well, but you do have to take it regularly so the effects build up. I expect the docs have told you that. I was able to gradually come off it by taking lower doses as by spine healed. I do so hope it works for you and relieves all that pain.

Hugs, and will be thinking of you tomorrow.

Barton.x

[Carolyn52]

Hiya Maldives
Phew ...I have been worried about you this week as haven't heard from you. Well I don't know what to say really ...I have been on this forum for 15 months and have never heard of Mets in the facial area like you but it looks like its going to be painkillers to keep you going but at least you can manage a little walk everyday with the dog which you must still do.
I'm glad u are seeing the oncologist and he will be able to prescribe the best treatment ..if you go on cape chemo pills again ..there is a really good thread here to help.
I will pm you later but at least you know what the pain is now ...sometimes ignorance is bliss !!!!
Hugs Carolyn xxxx

[Maldives]

Hi girls. Had an awful week of tests. Saw max fax surgon who read out all my reports and showed me the bone scan pictures.
Looking at tge skeletol scans he tells us the dark areas are cancer although there are nets in the lighter areas the dark areas are concentrated. Oh f.............. was my reaction excuse my frebch but it was a bit of a shock.
The numbness and pain in my face is cancer.
From just below my eyes it was solid black.
Moving to my neck and shoulders and spine no white areas at all.
My pelvis front and bavk solid as are the legs fribs and right arm again reason i was in so much pain. So that was a bit of a shock. Cant do anything for this he said. Pain killers.
Good news is its not in my brain and i havent got that horible jaw disease.
I see my onc on monday to find out next step. Im ok just in so much pain on the face.
Got another lovely drug gabapentin. Anyone on these? They are a nerve painkiller.
Well love and hugs to all. Onwards and upwards we go. Xxx

[Maldives]

Hi racer. I have been on the oral chemo tablets your on about. I took them everyday for 3 months. I had great results they got rid of the tumors in my liver although they were small and i had a good reduction in the bone. Better results than the first chemo. Cant remember what it was. I think i may go back on tgem next week. I see my onc on monday.

Welcome pipen and PMOL. These threads will really help. Its iur own little space that we can get our moans or worries out to people who understand. Dont be afraid to stabd up to or change your onc. Its important you get each other. If mine said we dont know what to do i would change unless they have beeb fab up till now. I have such severe bone nets i should be gone or really poorley in bed. I make myself do a 30 minute walk a day. Doesnt seem much but after 2 femur nails its great going. There are loads of drugs out there to try. So keep your chins up and keep in touch. Sue x

[racer]

Thank you Julie D. Have posted on other thread and Barton has responded. Made me feel a bit better as I felt on my own. I always want to know the plan and answers but realise that it is just trying different treatments first to see how I respond. At least no blood transfusion this week and I know my platelets will be rubbish on Thursday . See what they do next and they are keeping an eye on me which is good. I suppose I have to give it time and feel reassured about the ladies who have been taking same med.
I will keep everyone posted as it may help
Someone.
Just take each day .Take care everyone and hugs.

[PMOL]

Thank you girls - indeed it has been the longest and shortest week of my life!! As you've said, as they've started treatment feels like something was being done. 

Pippin I hope you recovery is quick...

one thing that this new dx has taught me is to not be proud, accept the help from others as it is their way to do something in a situation that nobody can do anything and accept being pampered, even if it's for a short while!! 

Xxxx

[JulieD]

Hello PMOL and Pippin,

I'm sorry you've had to join us but glad you've found the thread. You will find information and support here from people who know what you are going through and hopefully we can give you hope and encouragement and take some of the fear an anxiety away from you.

I t is very early days for you both and you are bound to be a mass of emotions and your heads full of questions. Don't feel that anything is too silly to ask, if we can aswer we will. The first couple of months are the hardest but  once you have had time and space to take your dx on board and have a treatment plan in place you do slowly find your own way to adjust and cope. When you start treatment and get used to the routine you feel a bit more in control and as if something is 'being done'. You will see women on here who have been livingwith mets for years and you'll hopefully be able to let that knowledge take some of the terror away - I  think most of us just want proof at the beginning that it can be lived wth and doesnt mean an immedietae death sentence! (I know I did)

I  hope that your next appts give you the answers and info you need and that your treatment plans will be explained and started quickly. PMOL, I  see you have already started treatment, if your mets are in bones it might be worth asking your Onc about bisphosphonates (bone juice as we call it here!) to help strengthen your bones. Pippin I hope you are recovering from surgery well, they may not start your treatment til you are recovered but hopefully they will tell you what the plans are.

Racer I'm sorry you are struggling with SE's, sounds horrid! Hope you will get some good tips from the other thread and that those on the same treatment can reassure you. I  know it doesn't make the SE's any easier but I  imagine that knowing others have experienced similar can make you feel less alone and that you are experiencing 'normal' symptoms which can be dealt with or may subside. I  wish you luck for the next dose and hope it is easier.

xxxx

[racer]

Thank you for your support and info. Been on the thread for caps.
Hello to the New ladies sorry that you have had to join the group but I have gained more knowledge/ support of the ladies. It is difficult discussing your fears with loved ones as we put a brave face on !
All I do is try to take one day at a time and not think of the future. Try to make every day count and do those things you have put off !
Take care everyone and sending hugs xxx

[Carolyn52]

Good morning ladies
Welcome to the group and lots of kindness and support.
At first ..the dx feels like u have been hit by a bus ..but u soon learn to live with it and it becomes the new normal.
You have to trust oncologist to choose the right treatment plan and try to focus on something nice each day ...as u will see from my earlier posting ..I put on sing a long frozen on DVD yesterday ...

[Pippin]

Hieveryone I have not posted before but have been reading this thread.

Hi PMOL I too was diagnosed end of Dec with bone secondaries from original BC and new primary. Mastectomy was on then off then on again and am now recovering from surgery. That feeling of utter devastation waking each morning is so familiar to me but I have found like others have said on this thread that that state does pass. I have not yet gone a whole day without thinking about it but others have and I think with a bit more time I will get there.

[PMOL]

Hi girls... new at this 😉 Got diagnosed with bone mets on Monday... think I'm all over the place emotionally... was going in for a masectomy after my bc returned and they stopped the op due to the mets... now on hormone treatment (zoladex & letrosone) but just started... trying to get my head round all of this... nit sure I,make much sense!! 😥

[Moijan]

'Ohhh - you put your left leg in,  your left leg out, in out, in out, and shake it all about'🎤

Moijan

[Carolyn52]

Hello ladies
Haven't posted here for a few days as to be honest couldn't offer any better help or advice than you have been given.
Cold, dark afternoon ..I've been watching " frozen" on DVD ....let it go ...let it go ...the poor dog has ear ache with my singing !! ( chocolate was involved too !)
Carolyn xxxx🎵🎵🎵

[Barton]

Hello racer, lovely Moijan is right - the 7 on, 7 off is quite a well known regime for Cape. I think the Americans use it more than we do over here (my Onc claimed to not believe in it, but as Moijan says, she has been on it and plenty of other people have good results with it too).

Please do join us on the Xeloda/Capecitabine thread on the Treatments board. 

Hugs, and wishing you all the best. Barton.x

[racer]

Aah thanks Mojan. That has made me feel better. Think the blood results make you feel down. I had googled for info as well so driving myself mad . I will look at other thread tomorrow . Really appreciate the info . Take care xxx

[Moijan]

Hi there Racer,

havent crossed paths lately, have we?

its fine to have cape one week on and one off...that worked really well for me for about two years...can see why he is being cautious with you...obviously you need the right amount of platelets....

try not to get too fed up...totally understand why you are worried, but my onc too scans my bloods thoroughly and They probably all do!

these treatments play havoc with our body chemistry so its all a delcate balance....sounds as if hes trying to look after you really well........

also look on the Capecitabine thread...lovely Barton is a Cape veteran and may have some good advice/personal experience to share xx

love, Moijan💚💚💚

and...we all dread being told theres nothing else for us......but there are new drugs bouncing in off the horizon...take heart xxxx

[racer]

Thanks funnyface. I am leaning on Onc a bit but dreading what he will say. I feel as if I am a guinea pig. If I don't see any development I will arrange an appt with his boss but think he is struggling too. I don't think they are giving med enough time to work and just jumping to the present problem and elevating that symptom. I have always been awkward lol . Just trying to be realistic but not too negative or positive. I keep saying that they would not try different things if they did not think it would help.
I will keep you posted. I feel that I don't want to be too negative as. The hormonal Meds kept me going so hoping Chemo or alternative med will stabilise me and buy me some more time. Funny though my high temps have stopped this week and wonder if it was transfusion or just a long virus . Just keep going on a daily basis and at least they are seeing me weekly. Even the receptionist recognises me and uses my first name. Think it would be great if we could have air miles or reward point system for the waiting time/visits to Hospital .
Take care everyone and sending love to you all xxc

[funnyface]

Racer, You must be so frustrated I have not had any experience with this. I wonder if a different chemo might be better. Have other chemos done this too? Can you get a second opinion?!? I'm crossing fingers for you that the every other week might be your answer. It us crazy these drugs effect each of us and how everyone's cancer is different. No wonder it is so difficult to find a cure! Good luck! Please let us kniw how every other week works! Hugs, will be thinking of you! FF

[racer]

Hi everyone have not been on for a while. Basically it has been up and down . My blood results are unstable and was due to start capectibine think that is how u spell it. But because my platelets are low -19 one week and HB low. So one week I have had blood transfusion which has affected platelets . So following week small dose of vincristine Chemo to nudge platelets. Onc doesn't know what to do as complicated. So I said I am not on any significant treatment and could be still like this for the next few weeks so agreed to start Chemo tabs for 2 weeks and one week off.
Went for review after one week and platelets dropped to 18 so stopped Chemo tabs put me on steroids for a week and small dose of vincristine. Been for review today expecting transfusion. Onc said they are struggling with what to do. I get scared because I don't want to hear him say nothing else they can do . Blood results came and platelets are 39 which have not been for weeks. Onc has put me back on Chemo tabs but for one week on and one week off. Said platelets won't be good next week. Just want to keep going and feel fed up especially with holiday plans etc people are making. I know it is not their fault just cross with the illness.
Is anybody had similar experience ? Sorry to be fed up but as usual putting a brave face on for family who I know are worrying .
Thinking of everyone and just need some nice weather. Craving for Spring to come my favourite time of year . Take care everyone xxx

[stresshead]

Just a quick hello to all

Avrelia,,,,,congrats on the return to work:hope its going well.

Truff.....hope you are still feeling a bit more up beat. xx

Love to all. x

[funnyface]

Truffle, You certainly are not a wimp! You just had a lot put on your plate! I don't think any of us are wimps! This not easy!! FF

[Carolyn52]

Truffle shuffle
You are not a wimp ..with the dx you have been given you are being very strong and grown up and you will be able to pull up your big girl pants now once you know the treatment plan .
It's easy for me ..I'm still at the one a day little letrozole pill stage !! ( well and a bone juice jab and a adcal tablet!! )
Loads of hugs
Carolyn xxx

[truffle_shuff]

 thank you , thank you,  that sounds so positive , xxxx 

 will get reading , you are all amazing on here , make me feel like a wimp , xx

[Barton]

Oh Ff, that must have been a nasty shock. Glad it's safe and avoided your house.

Truffle-shuff - sorry I haven't posted until now. So sorry to read of your worries. I don't have any advice to offer, but JulieD and Moijan have, I hope, managed to put your mind at ease a bit with all their wonderful help. Just wanted to wish you all the best for your treatment, etc.

Yes, Carolyn, it's been quite quiet on here lately. Hopefully it means everyone is just getting on with things!

Hugs. Barton.x

[Carolyn52]

Good morning FF
Wow hope u r ok with the tree but just think the logs will useful for the log fire your hubby hasent built yet !!!
We have thick fog here but its ok not too cold .where is everyone ??
Carolyn xxxx

[funnyface]

Quiet on here today! Had a few minutes before I go to work, so wanted to check on everyone. Truffle I've been thinking of you, and glad you were able to read some stories to give you encouragement! I hope you get moving quickly with a plan. I know sometimes when things are happening quickly it can put us in a spin! On the other hand though if the doctors drag their feet too long, our imaginations get the best of us! Please try to squeeze in some fun, in the middle if all this. Treat yourself to something you have been wanting!

OMG, a tree just came crashing down! It didn't hit the house but it sounded close. Must go look! It's an extremely windy day and going to get worse as the day moves on! OK, all is well! It's leaning into another one and should stay there! Plus a huge branch came down out of another tree and is laying across the branches of several smaller trees. Darn wish it was across the driveway, so I could stay home today! Have a great day! FF

[JulieD]

Dear Truffle,

I'm so pleased to hear you are feeling a little more hopeful.

I  remember when I was first dx all I  wanted was to know that it wasn't an immmediate death sentence and that there were people out there living with what I  had. The links Moijan has given will hopefully further assure you that yes there are people with brain mets that not only continue to live but live well.

Hold on to hope.

Lots of love and masses of strength xx

[Moijan]

Hi Truffle...

The

'Nearly four years in ....and brain mets please help'

thread is under 'Living with secondary breast cancer-Treatment and medical issues'

there are a couple of posts about it from two other ladies....one is undergoing wbr just now another has had cyberknife.

love and Hugs,

Moijanxx

[truffle_shuff]

 Thank you, yes it has lifted me so much , It was like being hit with a sledge hammer . I do feel more poritive now.  I had a couple of lovely replies on private message , I have been trying to reply , but , the link seems to be taking a nap . so if you dont get a reply from me soon, honestly all info was brilliant and has given me hope .

 keep well xx 

[Carolyn52]

Hello truffle shuffle
Sorry I was going to reply to you but Julie did such a lovely reply with so much help that there was nothing more I could say but I will send you loads of hugs and wish you well with whatever treatment you get .
Carolyn xxxx

[truffle_shuff]

   Thank you so much for your informative reply Julie d.

 It has lifted me , I am planning my funeral at present ,  and The thought of WBR , sounds very barbaric to me , but you have given me some hope that this could be doable for me , oh and breath !!!! .  i could handle the liver , bus as you sat the brain, is me, its personality , its memory its human . so to hear that I may be ok after this and not a vegatable is very reassuring.

 bless you and keep you well , so very grateful xx

[Carolyn52]

Hello Jeanette
Are you ok? You haven't been on parade for a few days ...I tried to pm you earlier but it said your pm was disabled !!
Carolyn xxxx

[Moijan]

Hi again Truffle,

hope the link worked?

let me know if notxx

there are few ladies on there who may have ideas xx

Moijanxx

[bonariensis]

Go for it Funnyface love B xx

[Moijan]

Hi Truffle Shuff...

So sorry you now have this new worry....fortunately, im able to point you to a newish thread which you may find useful. The thread has quite a bit of helpful info on it now.and others who are in your position or have been..do have a look.

and lots of hugs for you xxx

https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Nearly-4-years-in-and-brain-m...

Moijan💖💖💖

[funnyface]

Truffle-Shuff,  Well that result , I'm sure put you in a spin. The liver seems to respond well to treatment for most. I wonder if it is bc of the livers own  healing ability? Do you know what chemo you are going on? Have you had capecitabine? It can pass through the blood/brain barrier. Have you had any appointments with I'm assuming a neurologist/oncologist/radiologist team to discuss your plan. My experience with friends is that they have tried to have each tumor zapped if possible, saving whole brain radiation if absolutely necessary. You need to find and read some positive stories on this! There are woman out there who have done wonderful for years. It's OK to be scared, I know most of us would be a basket case! We are here for you. FF

[JulieD]

hi truffle stuff,

Sorry to hear your latest scan results and understand how frightening it must all be. I  only have bone mets so can't speak from personal expeience but I  have lived with  SBC for more than six years now and I  know women and have quite a few friends who have liver mets and I  also know a few who have brain mets.

First the liver mets. The liver is a remarkable organ and is very good at working on greatly reduced capacity,in addition to that treatments can be very sucessful for many years. I  can' give you exact timings etc but I  do know tat some of the liver mets women I  know have been living with it for 6 or 7 years plus and though they may have had to change reatment at some point are still doing well.

Brain mets are scary for anyone to think about, because we see the brain as being 'us'. The treatments you get for brain mets vary depending on exactly where they are, how many, how big ....There is surgery, whole brain radiotherapy or targeted radiotherapy (steriotatic/cyberknife). I  have known women who have had these procedures, some of them have had more than one type ie surgery and then later radiotherapy. Most of those I  know who have brain ets have been diagnosed more recently, about 2 years ago. The treatments can make you very fatigued, you might get thinning hair, headaches for a while and sometimes speech and memory suffer for a bit but none of the women I  know has ever said they regretted having treatment and they do seem to improve as time passes and things settle.

I  don't know if this has been of any help to you, I  certainly hope I  haven't added to your concerns. What I'm trying to say/demonstrate is that even when we fear the bleakest outcome there are people out there that prove you can be treated and continue to live a relatively normal lfe.

I  send love and strength to you - keep in touch xx

[truffle_shuff]

  Hi,  

Sorry may be in wrong thread , but I need your wonderful thoughts and experience. I have been treated with Fulvestrant for bone mets for 6 months. scans yesterday show , liver and 3 mets in brain. terrified, will be back on chemo for liver , then if that stabalises will be offered hole brain radiotheraphy, now that scares me , surely that will leave me with lots of problem.

 Does nyone have experience of this

thank you keep wellxx 

[Carolyn52]

Hiya sue
All the best for your next round of scans on Monday ..yep what with the nail pins and radio active stuff you will be a force all of your own ..bionic man and superman ..you should be quivering in your boots.
Carolyn xx

[Carolyn52]

Hiya moijan
Not really a George Clooney fan but he can pour my coffee any day as long as he brings choc as well.
I'm having a bit of a choc health kick ..switched to dark stuff now and with peppermint in middle for my heartburn !! So am trying ..haven't put on any weight in six months since I was last weighed so must be grateful for small mercies !!
You sound chippy this morning so let's think that your chemo is working well.
Carolyn xxx