Bone mets - please join in

[bonariensis]

Dear Jellytot

I'm so sorry to hear your news. It's a very difficult place to be in. Hearing there's something going on in your head is frightening. Does your hospital, Macmillan or local hospice {not just for the terminally ill) not have someone you can talk to? As the others have said, try to find nice things to distract  you and get you through the next couple of weeks and then you should be able to start moving forward with a new treatment plan.

big hugs Bon xx

[funnyface]

Jellytot, That is a long wait, but that gives your onc time to think things over and get more input from others! You certainly don't want the to rush. I think there is a brain mets thread on here if you feel the need to talk to those who know more. Also I think the American site bcmets.org has a brain mets section. I'm not saying you have them, but maybe you want to read up on treatments in case. I think if I was you I wou l hop in my car and go away for a few days. Spoil yourself! Sending more HUGS and squeezing tighter. FF

[redridinghood]

Jellytot...........first of all I couldn't agree more with Carolyn. Don't feel you are in limbo. You are now in a bubble which could last 2 weeks. Try hard to have some good times while you are in this bubble. There is nothing you can do for now except worry, so put it to one side. There could well be more treatments ahead. Brain mets are a world on their own. I met a lady recently with unexpected brain mets. She was given this highly focused laser radiotherapy. Gamma knife I think it's called. There is whole brain radio and cyber knife. Also steroids are used successfully, as well as other meds. So wait and see. I am no expert, but do try to be optimistic. Your onc will be discussing your position with others in the meantime. Your scans will be studied by experienced radiologists. Don't get me wrong. I know you are in a hard place. But try to wait and see. Everyone here is waiting too, and thinking of you. You aren't alone. We are all rowing this boat together! Do drop by to tell us how you are.

Take care for now,

mo              xxxxx

[Carolyn52]

Oh jelly tot
I will be the first of many to reply ...I don't really know what to say but it's trial and error finding the right treatment plan and hopefully your oncologist will be doing that ....all the waiting around is the worse bit but try to focus on something nice in the meantime ...
Hugs xxx

[jellytot83]

Hello All,

so first things first, I have been taken off the trial drug, apparently depression and suicidal thoughts are now a known side effect so they don’t want me on it any longer.

CT scan results weren’t reported on but the oncologist said from his untrained eye they didn’t look worse.

The scariest results however were those from the brain scan. It’s come back as "abnormal". The onc said they didn’t present as brain mets from breast cancer but there are "lesions". I am so scared. He wants a neurological specialist to look at the scan.

I have no idea how to process all of this. Firstly being off the trial, what the heck is my next plan, secondly if it is in my brain, how on earth do I deal with that. I feel in complete limbo. I have to wait 2 weeks for my next appointment. 

Beyond terrified xx

[vercors]

I managed to lose a long post. Let s try again. 

Alex, 

I have been following this thread to almost 6 years but not posting very often. I get the email alerts daily. Ever since my secondary diagnosis I was on herceptin. Then in 2016 my CA153 started rising slowly and in the spring of this year they started to go up sharply. This is when my consultant said she wanted to get to the bottom of this. Scan showed the lymphatic system of my lungs was inflamed; the cancer was on the move. End of August I started Kadcyla and I am happy to report that after 3 treatments, the tumour markers have halved. 

As Kadcyla is basically herceptin with chemo, I was silently confident it was going to work. 

Kadcyla is a wonder drug. Apparently some ladies from the trial years ago are still on it. It was only made available on the NHS in July and before it was on the drugs fund. 

Like for Herceptin you will get regular heart echo. I am tired week one, and resume “normal” life week 2 and 3.

It is a targeted chemo, so no hair loss but chemo it is so immune system is weak. 

There are a few treatments available after Kadcyla. I have lost my list, if I find it I will post. 

My take on this is 5 1/2 on herceptin, I hope to get the same on Kadcyla, by then more treatments should be available. 

Xxx

[funnyface]

Alexde, Welcome back! I'm sorry but I only have one bone met and don't take anything for it. It's my lung mets we treat. Also I'm HER2-, so can't help there either. I can say I'm sure you have options and will hear from someone soon. It is usually quiet on the weekends. Hugs and good luck! FF

[Alexde]

Hi everyone, 

i checked in a couple of months ago having not been on this forum for a good few years.  After 9 years on herceptin and tamoxifen I have progression in my sacrum.  Had a blast of radiotherapy and this has helped with the pain.  The plan is that I am going to start Kadcyla and denosamub.  Is anyone else on this thread having Kadcyla as I would like to know how you have got on with the drug.  I would have preferred to have stayed on herceptin and added an AI or a chemo such as capecitabine.  Have been advised that this cannot be done due to funding and that I will not be able to back on a herceptin combo after Kadcyla stops working.  As a consecquence I feel that I have fewer options open to me.  

Alex

[Moijan]

Hi ,Ladybird, Jellytot and Babsy,

this  illness is such a bu*g*r! Isn't it?  Ladybird, haven't had your kind of pain, but I do get pain...was on a tube today, suddenly was reminded I have  rib mets....Have also had a strange pain down the front of my shin.....I even went to chat to the venous cons briefly this am in case it could be a new DVT which he said not. The pain is very real thou.  Jelly tot. I expect you've had your results by now, hopefully good ones? Again, I've been where you are, and Babsy, I can quite understand how much of a relief stopping treatment can be....Lots of ladies have mentioned this and there's a lot to be said for quality of life.

anxiety and depression and also sleeplessness are so common amongst us....Cancer does this...it is insidious, silent and very crafty...;...trouble is, the drugs do these as well

we can't prescribe or advise, but my go gave some amytriptiline tablets for sleeping and these seem to help.

i do hope your. Situations get better. Pdq

love,

 moijan👩‍⚕️

[Babsy]

Hi Ladybird. I hate being in pain and I’ve kicked and screamed with the medical staff to ensure that I’m not in pain cos it can make life intolerable. They’ve finally got the message. I’m on 30 mg of morphine capsule a day as well as a nerve blockers (cos of growth of bones putting pressure on nerves) and available liquid morphine that I can use as a top up. My life is SO different now, it’s amazing. So make sure you fine you find what works for you bEcause it is life changing both physically and mentally and such a relief for my family

Jellytot, sorry to hear you have been feeling so low xx it’s worth touching base on the forum as I always find that it helps helps my spirits. 

Im having a blood transfusion at the moment, which is taking forever!! However once it’s done to done for about another seven weeks. Mainly living at Seasalter at the moment. With my pain under control I am now able to go over to the beach etc, which I love. Have to remember not to overdo it. 

I’ve found complete freedom because all treatment has stopped. You’d think I’d be scared etc but it’s the complete opposite. I know it’s different for everyone but I’m just so grateful to feel the way that I do. I don’t even think about cancer very much hence why why I don’t come onto forum that often. I’m 

wishing you all well. I’m gonna try and get information leaflet done this afternnoon, so message me if you think o of anything that should be included. 

Babsy x

[funnyface]

Jellytot,  Don't you worry about what you posted! I'm glad you came on and let it all fly! Those night sweats are killers! For me it goes, I'm freezing, I'm sweating, I'm soaked from sweating, I'm cold now from being sweaty wet, out of bed to change PJ's, turn radio on, fall asleep for a bit, then repeat, repeat, repeat!!! Get up, have coffee and breakfast, then fall asleep in chair! 

I'm not up on anti-depressants. Maybe one of the other girls or the nurses might have a suggestion. Do you feel you have reason to be scared that the trial drugs might not be working? Did you ask for a brain scan or is it part of the trial?

You are smart to stay on top of all this! I'm praying for a break for you! I hope someone is going to your appointment for support.  BIG HUGS and wishes that I could change this!! FF

[jellytot83]

Hello girls,

I haven’t been on for a very long time. I have been suffering very badly with depression and anxiety. I am trying desperately to find something I can take to help me whilst being on my trial. I have also been having some worrying side effects so I had a brain scan 2 Mondays ago, I also had a CT scan as part of my trial (3 month check), results tomorrow which I am very scared about.

I’ve also been suffering very badly with night sweats (and hot flushes to a lesser extent) which are stopping me sleeping, I probably get 3 hours a night now. I haven’t slept a night through since mid-July.

Sorry to return with such a morose post, it’s taken me a long time to be able to even write this xx

[Ladybird2]

Thanks Moijan and Carolyn

The Macmillan nurse is coming tomorrow to go through the options so we'll see if there's a magic pill!
Luv
Chris

[Carolyn52]

Hello Chris

Poor ladybird ..pain is horrible and makes life very miserable. Just wandering whether the rads maybe have increased the pain temporary and it will settle. ..I was told it can be 2/4 weeks after rads before they kick in.
Also, reading on the threads. .not from experience as I'm still a letrozole lady, but I think the buttocks injection Faslodex ladybird is having can cause a lot more bone pain too ...it's so unfair that something that is prescribed for bone mets can increase pain ..
I had a lot of bone pain a few weeks ago ..it's better now but just took a couple of paracetamol at night and a hot water bottle ...rubbed in ibuprofen gel too. I tried to ride the pain during the day by gently walking or focusing on a book or crossword rather than pop too many pain killers. ...I find ibuprofen very good for actual bone pain but please be careful as they can be quite dangerous. ..

Sending hugs to lovely ladybird xxxx

[Moijan]

Hi Chris

sorry you are in pain..xx do speak to the onc...they will try to get that sorted for you. I do have bone mets, but the lovely Carolyn is likely the best person to chat to about this as she, too, has been through several mills with her mets and likely needs pain killers sometimesxx

my love to you. By the way, I too am on the buttock injections, have had one dose which wasn't too painful so am praying they will continue to be similar and to do the job!

Moijan💚💚💚

[Ladybird2]

Poor Ladybird's in pain. The worst I've ever seen her with. She had a radio zap to the pelvis after Letrozole stopped working and she has been crippled with pain in hips and legs ever since. She goes for buttock injections again on Monday and Denosumab at the same time. Sounds like a fun day out!
Her leg pain is bad first thing in the morning and gets better as the paracetamol kicks in.
You are not alone!
Hugs
Chris.

[funnyface]

Glass of wine sounds good. Last year my kids took me to a wine pairing with chocolate! Couldn't go wrong on that one!

[Carolyn52]

Moijan

Thank u so much for being such a good friend and researching the Cadbury Flakes. ..but it must have been very hard to do and eat so many in the interest of "testing" ..... I think u will agree now that they don't taste so good as they used to ...I'm partial to a Twirl too but even they don't taste like they should ...bring back proper Cadbury choc ...

I'm afraid my taste buds now prefer Galaxy and Terrys choc ...but this morning only Rennie tablets are my best friend ...had 2 glasses of wine yesterday and I'm suffering ....maybe McDonalds will help! !! Ha ha ..self inflicted not looking for sympathy !!
Hope everyone had a lovely weekend xxxx

[Moijan]

Carolyn xx

Can’t recall which thread it was now, but regarding Cadbury’s flakes - I found some and carried out some research for you... Sainsbury’s sell a pack of 9, and also packs of small Twirls( 2in each). Twins are flakes covered in chocolate ....

Sadly I’ve had to chomp my way through about 5 flakes and 4 small packs of twirls...because I needed to make up my mind.........
The research was quite tedious (🤒😜🤡)
And unpleasant - but I’m happy to report the twirls do taste that little bit nicer Xx
Moijan( burp) oops....

[PMOL]

Hi girls! Thanks so much for the info! My spine looks like Swiss cheese according to my lovely husband 😉 Don’t know whether the denosumab and exemestane (now added everolimus) are doing their job until next ct in December...
have oopherectomy tomorrow and although feel calm, anxious at the same time! 😔

[Kate21]

Hi Avrelia, thanks for your message, have replied to you, hopefully I’ve done it right! x

[bonariensis]

Hi Maria Louise

When I started on exemestane my onc said that it wouldn't start working for a month. (He said that because there had been a delay with scans and biopsies and he wanted to get me started on what he thought would be the right treatment but could stop it if it wasn't the right drug). I have now been on it for 2 years. Hopefully it is just starting to work for you.

Hugs Bon xx

[kirky_68]

LOL ignore it then unless they reject it. Hate parking companies, they target the wardens with how many tickets they can issue so will issue tickets over the stupidest things. Good luck 🙂

[Carolyn52]

Hello Kirky
It just says parking charges notice ...there is a photo of my car ...with my hubby sat in it ..I can see the ticket on windscreen and my Blue badge! We actually paid for 2 hours of parking and stayed 30 minutes !!
I smell a rat !!

[kirky_68]

Hi Carolyn, parking company is legit. Does the notice say what the penalty is for? Overstaying, not displaying ticket or parking outside the limit of the bay? Unfortunately in private car parks the blue badge does not entitle you to any cancessions (though some landowners do give it). If they reject your appeal you can go to the ombudsman POPLA but as long as you've got proof that you submitted an appeal via the website and they don't reply don't pay anything till you've heard back from them.

[jazmia]

hi carolyn ,

just a quick reply ,betty my friend and i were given a car parking ticket in a public car park about 4 years ago ,we mailed them ,wrote to them ,tried ringing but to no avail,and never heard a thing since so never paid anthing ,i just do not remember the name of the company  ,but wish you luck and they can not touch you with ticket proof and blue badge .

take care reneexxxxxxxxx

[Carolyn52]

Hiya Maria
Your poor love ...my oncologist retired last year too and I always felt in safe hands with her .
I don't get tumour markers done but 6 weeks isn't that long for the exmestance to get chance to start doing it's magic ...fingers crossed that your scan results will show as stable when u get it.
Try not to panic too much ( says old worrier knickers here!)
Hugs xxx

[Carolyn52]

Well ...I'm fuming ..got a parking notice for illegal parking in a public car park ..but I have my parking ticket here as proof ( always keep them ladies) and am a blue card holder ..
I have e mailed the company twice with copies of my ticket but no reply ...there's no phone number to contact either ...the firm is Smart Parking ...just wandering if this is a scam ?
Xx

[Rose47]

Hi X Well I arrived for my onc appt yesterday to be told that he has retired and that I had a new oncologist.  That destabilised me to start with.  I was then told that my tumour markers had risen from 45 to 53 (I have never been told my markers before).  I have to have a scan in 3 months. Also my liver function was slightly raised.  I have been on Exemestane for 6 weeks after tamoxifen stopped working.  Does this mean that Exemestane isn't working either ?  Just a bit worried.  Xx

[Carolyn52]

Hello Ramade
Thanks for that info about the new bone growth ..must be honest never thought too much about it before ...obviously our bone juice is doing the job .
I don't think anyone has ever mentioned this on the threads before ..so thanks ..
Hope u feeling betier after the rads ...xxx

[ramade]

Hi all, just thought it would be useful on this thread to say that when I had my whole spine radiated the other week they took xome pictures through the radiotheray machine because they weren't sure whether the latest chemo was working or not and I was told later that it actually showed the new bone growing over the damaged bone and sealing up. Amazing as I have loads of cancer in the spine and significant osteoporosis. Apparently it takes 18 months for new boneto totally replace old. Now that has to be good news for us "bonies"!!!!

Love to all and have a good weekend, just bought myself 2 nice presents on amazon to celebate.

ramade xx

[avrelia]

Kate, When you click on my name another page will appear then you will see somewhere on the righ "send private message" I have just send you one

[avrelia]

Haha Carolyn, it does not matter honey comb, cheese, as long as the denosumab is working. How is your oncologist describing them now, as hard as rocks or he will again choose some kind of food:) 

I have been always wondering as well, they say denosumab is a bit different from the other strenghteners, may be it is smarter:)

[Carolyn52]

Hello Kate and avrelia

Snap ..my oncologist described my bones as like honeycomb when dx two years ago ....not sure which description is better ...cheese with holes or honeycomb but at least denosumab is doing some repair work ...still confused as it's injected in tum but how does it know where to go ? Does it have sat navigation to holey bones ?
Hugs xxx

[Kate21]

Hi again, let’s hope we’re both right! It certainly struck a chord!! I would pm you, as I’m not sure what you can post on here, but I don’t know how to x

[avrelia]

Yes, I thiink it is good news. She said that the holes are filled in, which might be a similar case as yours. However she only realized that after an MRI, not standard CT or Bone scan. I do not know how all of these differ with respect to bones, as last time sha was not happy with the bone scan but she is happy with the MRI....Kate, do you do a Wednesday as well? Is it a coincidence or we might be somewhere close

[avrelia]

Yes, I thiink it is good news. She said that the holes are filled in, which might be a similar case as yours. However she only realized that after an MRI, not standard CT or Bone scan. I do not know how all of these differ with respect to bones, as last time sha was not happy with the bone scan but she is happy with the MRI....Kate, do you do a Wednesday as well? Is it a coincidence or we might be somewhere close

[Kate21]

Hi Avrelia, I really don’t know the answer but it sounds to me like hard must be a good sign?? I remember my first scan after starting treatment and Onc was pleased because the affected bone area no longer looked like cheese with holes in but now looked filled in!! Can’t offer anything about liver profile I’m afraid. Lady Oncologist and Wednesday clinic, that’s very familiar too! Hope it does prove to be good news for you xx

[avrelia]

Hi all,

Just came back from my oncologist appointemt, which this time left me speechless, as she told me that judging by the MRI my bone mets have become harder and she does not want me to have any radiotherapy at the moment unless I have pain, which I do not. Although I do not understand exactly what she means that they are becoming hard, I agreed as I do not want the rads. She thinks that the Denosumab is doing its job. However my Liver profile showed a bit up, so she was thinking it might be due to Letrozol. Anyone else on the same page?

It would be such a relief for me to have a piece of good news after all the issues I had.

Hugs to all

[funnyface]

Thanks Nicky! Oct. is a busy month for you! Then in a blink Christmas is here! It sounds like our pancakes are better, but I'm sure it's a personal choice. I'm sure you have plenty of things that taste better than ours. FF

[nicky08]

Belated Happy Birthday FF and good to see you are getting a bit better niughts sleep - and in your own bed.  Your birthday breakfast and evening meal sounded great - I love American pancakes (our British ones are flat - as a pancake!! ha ha and not as soft and melt in the mouth as yours are) Also hubby sounds a dab hand at the evening meal - what a treat.  Plus money to spend, how good was that?!  We are also in buirthday mode with OH's birthday yesterday then my Dad's tomorrow and brother's the day after.  We're very poor after October finishes!

Hi to everyone else, have had a quick read as it's been a bit of a busy time for me with little internet access so hope you are all doing weel on various treatments.  Welcome to all newbies it's the right place to come to for support and experiences that we can share and help you with.

Nicky x

[funnyface]

Wendy, I'm sorry you are having pain too. Between pain and extra spots I'm sure you are exhausted and overwhelmed. I know I have been. Plus these doctors are never on schedule which drags out the appointment time. Hugs!

Thanks everyone for understanding how awesome it was to get back in my bed. I can't wait til I can get in and out without pain! One step at a time. FF

[funnyface]

Renee, Little one is a girl, but I would have been happy with either. I like your gaming weight diet! Enjoy all the extras!  FF

[jazmia]

hi ff,

so pleased to hear you are slowly recovering ,stick with it girl and you will get there in the end.

i just had to go and make myself some of your pancakes but had clotted cream on mine ,i had the fruit in as i have started to make myself fresh fruit smoothies and, juices.

my doc advised i use fresh fruit ,ice cream and double cream ,to make them as i need to try and put on weight,so have taken her advice, as normally i dont eat fresh fruit and would not have had it in my home .

i can imagine how you aree feeling about a new grandchilld ,,time will soon pass and you will be able to enjoy boy or girl,do you have a preference or not as long as fit and healthy.

take care and best wishes .

reneexxxxxx

[Hayeswen]

Hi All

Firstly welcome to all the newbies and congratulations to all the nannies in waiting. How exciting . I have been through another round of radio treatment to spine and then bone scan which was good news as nothing else detected and tablets changed to letrozole. Had second zoladex injection today. However, have pain across top of back but bone scan only 2 weeks ago so hoping it is just referred pain or tension as back at work rather than tablets not working. I too feel I am constantly at one appt or another and still need to go back to finish reconstruction and tempted to have lopsided boob forever. Anyway chin up love to all and it's now home time. Wendy

P.S jelly tot how are you I have not seen you posting lately? Hope all ok x

[bonariensis]

Hi FF

So glad you managed to get back in your bed last night. There's nothing like it and your feet and ankles do suffer if you can't put them up. Hope you've beaten the pain. Like the sound of your omelettes

The trouble with eating routines is that you tend to fit in with other people to a certain extent. I wake up so early that I begin to want breakfast early too.

Flu jab for me next week, same day as onc appointment 

Hugs to all Bon xx

[Carolyn52]

I hate January and February too but yours will be so busy and exciting with the little one ..and then before u know it ..spring and summer
Xxx

[funnyface]

Carolyn, I cannot t wait to meet her! First time ever I'm looking forward to January.

[Carolyn52]

Hello ff

So glad you are getting back into normality in your own bed again ...I'm been getting a stiff neck the last few days and so I'm off to buy new pillows as I think mine have reached their sell by date !!
You will soon be pram pushing and need to be fit for that ...I've got the baby shower on Sunday. .only about 6 weeks now before the twins will be hatched !! Once Xmas is over you will get the best gift of your new grandbaby too ....
Hugs xxx

[Carolyn52]

Hello Maria

No the ct scan doesn't cover the boobs ..I asked that too ..it's got to be the mammogram for them which is more specialised. I also find that ct scan only covers neck to hips ...no legs,arms or head which to me is only half a job !! Bone scans do the whole body and mri is a lot more detailed ..
Welcome to the world of scans,anxiety and appointments !!
Hugs xxx