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Bone mets - please join in

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Re: Bone mets - please join in

Hi Chris, glad to hear all went well at the Christie, I cannot fault this hospital and all the staff they are wonderful arn't they! I had my CT there 2 wks ago and everything went like clockwork. (Didn't get whisked off for lunch afterwards though! 😀  good luck with results, please let us know how she gets on. 

Hugs Janette x

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Hi Ladies
Chris checking back in for Ladybird.
Visit to Christies Salford yesterday went quite smoothly. Onc asked if any pain and reckoned her leg pain was due to sciatica.
Blood sample taken and ct scan booked....what more can you ask!
Whisked her away for a nice pub lunch in Cheshire.
Good to hear the good news from others.
Thanks for the comfort.
Xx
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woo hoo! Great news Jeanette! Smiley Very Happy Smiley Happy Heart

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Getting my horn out for  Janette! Toot, toot, toot!! I want chocolate too!! FF

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Janette - such good news! Brilliant - so pleased for you! Good news is always welcome.

 

Hugs. Barton.x

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Hello Maldives, sorry to hear you had a wobbly yesterday. I hope everything goes OK tomorrow though.

 

I think Moijan has pointed you in the right direction for the Cape thread.

 

Hugs. Barton.x

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Thanks Carolyn, oh I think a spot of chocolate is definitely called for! 😆😆
Janette xxx
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Whoop whoop ..my letrozole / choc buddy ..brilliant news bet u r going to celebrate later tonight !!
It's always nice to hear good things with treatments .
Carolyn xxxx
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Stable Mabel reporting in! 😆😆 all good with CT and markers in normal range!
Hugs Janette xx
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Jeanette
All the best for your scan results . Aagh such a late appointment ..why don't they do them first thing in morning !!
Maybe a bit of retail therapy ..nice latte and a Danish pastry would help today before you go !!
Hugs xxxxx
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Hi Moijan

My feet were terrible after FEC-T the 1st time round, no toenails, hard skin and corns. In the end my GP referred me to an NHS chiropodist which has been a godsend. Especially as since mets I can't seem to bend enough to cut my (now regrown) toenails. Has taken about 3 years to get them looking like human feet again!

Now I keep up with Chiropody every 2 months, a pedicure alternate months, reflexology every fortnight, in fact any excuse to whip em out and have something done.

Coupled with a bit of cream every now and then they've stood up to Cape pretty well, so far, fingers crossed.

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Hi Moijan and other ladies with toenail problems! I remember when I was on Cape a few ladies started mentioning that their big toe nails were really bad and ingrowing. I thought it was just me. I think all said it was their left toe but can't remember now it was so long ago. My toe nails have never really recovered from Cape followed shortly by Taxotere and then don't get me started on how Herceptin seems to thin my fingernails so they are like razors - I regularly slice myself! And this is with very short nails as they don't grow long anymore before they split. Toenails tend to be horrible and thick, especially the big toe nails. Sorry for the description but you are not alone. I don't know if any of you remember watching the original Dumber and Dumber film (my 2 daughters loved it so we've all seen it many times). When Lloyd was getting pedicured for his date night they used an electric sander on his clawlike toenails - that's how I feel mine are now - but at least it makes me laugh if I'm trying to cut them.

Nicky x

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Morning ladies, oh why does the "onc appt phobia" not get any easier??? Feel like running for the hills 😨 although I got fantastic TM results I do know they don't always go hand in hand with CT results! My appt isn't until 3.45 this afternoon so got to try and keep busy til then!!!

Good luck to those having scans / results and new treatments. 

Hugs Janette xxxx 

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Hi Maldives/Sue,

 

i dont recall talking about toenails...but as you brought it up...mine are quite awful! Awful toenails on 

Awful Feet!  And like you, my fingernails...well one thumb...is split down the middle...have to keep applying clear polish to stop it catching on things....maybe I should put some on my toenails too!

 

actually...am I the only one who cant easily cut my toenails any more?

 

i have dreadful probs every now and then with an ingrowing big toe nail?

I kind of nursed myself through it last time by putting a paultice on it, but long term I need help.

 

i am quite ashamed of my toenails/feet anyway!

 

 

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Hi moijan
Got the toenail thing mixed up. I thought it was donba 58 lol. Sorry donna.
I know it seems like a never ending circle.
But thats what it takes to keep me alive so i just get on with it. Its funny when they said my last scan everthing was stable, i knew it wasnt. Thats why he did all the tests and i was right. It pays to speak up if you dobt agree with something.
Thanks for the support
Huggs sue xx
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Thanjs barton.
I couldnt find the cape thread. What is it under? Sue xxxx
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Thanks for the info is it donna. I cant see everybodies names on my phone. Its all blurred ir its my eyesight lol. Thats just old age lol. Are you havibg trouble with numbness too. My lips gone now and my teeth. They are hoping the cape may take the pressure off the nerve being effected. I hope so. Didn't start cape today. Had a bit of a wobbly day start it on friday now.
Look after yourself and thanks for takibg the time to write to me. Sue xx
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Hi funny face. I dont know why i was taken off the cape. I think my onc is still trying the hormone blockers but they just arnt working.
Ive taken letrezole tomoxifen so far. Ive had vec and cape chemo. I had a good run until my first leg op. It seemed to stir up the cancer. I might go back on letrozole after tge cape unless he keeps me on it. The royal marsden is a shot in the dark i think. Fingers crossed. My nails are terrible too. They split right down the finger and my toes.
Take care xxx
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Hello Maldives, thanks for getting back to us to let us know how you are getting on - it is a relief to hear from you. I won't go in to the details about Cape, because you have said you have previously done it, so you know all the tips and tricks. However, please join us for a chat on the Capecitabine thread if you are up to it.

 

Good luck with the chance of getting on a trial - hopefully you will be considered a good candidate.

 

Hugs. Barton.x

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Hello Janette, lovely to see you back, but can quite understand you taking a rest from the Forum for a bit - it can be necessary sometimes.

 

Can't get over your wonderful TM results! That is so impressive! Enjoy the good news and celebrate.

 

Hugs. Barton.x

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Hi Maldives, I read your post. I've been at the Marsden for nearly 11years it was just the hospital they sent me to at the beginning. I consider myself very lucky being there. Not sure about trials but they are always at the cutting edge of treatment . I'm going back on Taxol from next Wednesday which I'm not looking forward too !! Need to start to preparing myself...

i was on Cap for 3 and a half years an it worked really well for me. Like you my hands suffered a bit but my feet were the worst. A friend bought me a cream called Udderly Smooth Cream . They told me about it at the Marsden .. I think the extra care one was developed at docs request to help patients with sore feet . Sounds crazy when u write it !!! Sorry if it's something you already know about but I found it helped.

i know what you mean re feeling numb ... I just keep hoping it's a very bad dream .... if only....

big hugs to all of us xx

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Maldives, Happy to see you posting! I figured with everything going on you might just pack your bag, catch a ride and go off on an adventure! Gosh, how I'd love too! Now back to reality! I think Nicky had a great idea on the oral bone strengthener. Hope that could work for you! I was wondering why you were taken off of capecitabine? I hope it is easy on you this  time too! Best of luck with the Royal Marsden! FF

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Janette, Welcome back! It's OK to take a break! Most of the time I love coming here to chat, to be supportive, or understood!! Other times when when we lose one of our "love bugs" I want to scream, stomp my feet and bury my head in the sand so deep my bottoms up. I sure hope I have some nice knickers on if I manage to get my bottom up!! Thinking I need a nice hot pink pair with hearts! FF

 

PS: Good luck Thursday! One would think with markers that low that your results would be amazing! We still always have that shadow if doubt! I try to walk away after my scan, brush my hands, say scan done, it will be what it will be! Then I go out for a late morning breakfast. I have git better over the years at thus, unless I feel a difference then it's a whole different story!

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Hi girls - need your help! I went to a BCC young women forum and they told us about a charity that would help for having weekend away or a bit of a besak in general.   Cant remember the name!!!! Can anyone help? Trying to see if we can go awway for a couple of days just to change the air after the dx. Thanks xxxxx

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Hi ladies

Welcome back Janette - we all need to take a break at times so there's never a reason to apologise. Just come back into the family 😊 Good luck with the scan results but hoping that the fact your TMs are so low that you are not stressing too much.

Maldives. Sorry that you had a long time between scans, I had the same when I was very stable for about 4 years, ie no changes whatsoever. I asked for a CT as I had some pain in my hip and my oncologist was go smacked to see progression in my bones and also into my liver. A CT will show changes in the bone (or maybe it's only the newer machines?) and mine are always reported on even though the emphasis these days is how my liver is doing. Our hospital only uses bone scans for diagnostic purposes, not for checking how treatments are working so I suppose all places have their own ways of checking.

Just a quick question about your bone strengthen. I see you are going back onto zometa, did this stop for a while? Also, have you considered having Denosumab instead. It would mean not having to have an IV every 3 weeks, just a very quick (less than 1 minute!) subcutaneous injection. Just a thought as you will be on oral chemo rather than an IV one you'd only be going into hospital to be hooked up to have the bone juice.

Nicky x

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Hi Maldives, have bern reading your posts with interest......am so sorty about your jaw / face problem....you have enough to contend with, but you do sound a little chirpier....I know things cant be at all easy xx

 

these awful spells, often go round in circles dont they...and then a little gem before another round xx have my toenails ( those that have survived) crossed for you and hope things are on the up and up

 

love,Moijanxx

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Hi carolyn
Thanks yes im usually a happy positive person but ive just had a low period 1st since dx so not bad. Thanks for being on the other end for me.
I had to ask for my bone scan as my tumor markers were sailing up and scan said i was stable. I knew somwthing was up. I can tell when the cancer is on the move. He was shocked when he saw the scan. The thing is the ct scan only looks at the organs, they tend to ignor the bones because they are not life threatening. As long as you feel ok you dont need to worry about it. They dont like putting radioactive dye in you either unless they have to. Take care hugs xxxx
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Jeanette
I haven't let the side down ..ate a Terrys choc orange today and I know Barton is keeping things going too as we were together yesterday buying walnut whips in packets of three !!
Ha ha xxxxx
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Hi Carolyn, how are you keeping my fellow choco-ohlic?? 😀

No don't seem to do bone scans anymore, think iv had 4 since dx 3 years ago. My onc told me that they don't tend to do them so much now. 

Hugs J xxx 

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Hiya sue / Maldives
Been waiting for you to post and let us know the results from oncologist ...well back on cape but you have had it before so will be able to prepare for the sore feet thingy again.
Don't forget the cape thread as lots of ladies there to support you ..just useless info but I read they are using cape and another chemo for pancreatic cancer now and having good results as it has a very low survival rate so those cape pills must be the good guys !!
Anyway ..you sound a lot more tickity boo now so hugs xx
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Hiya Jeanette
Welcome back ..we have missed you but understand about stepping back for a while .
That's brilliant news with your tm being so low ...my oncologist doesn't do them but in a way I'm happy as its one less thing to worry about.
Fingers crossed for your scan results being ok on Thursday ...do you have regular bone scans as well . I only had the one of those back in October 2015 ..they don't seem to do them much at my hospital.
Carolyn xxxxx
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Hi girls. Sorry ive not been on, its turbed into a manic week from my onc appointment on monday. Well we knew the results from the max fax surgeon. For those of you who dont know who they are (like me until ladt week)
They are dental and facial specialist that deal with disease of the mouth abd jaw ect.
My consultant was quite shocked at the spread in the bones since my last bone scan in 2015. About 18mths i think.
Im back on the oral chemo capceptacine or somethibg like that. Starting tomorrow. Also back on zometa although im waiting for him to see jaw scan i had today. He is also refering me to the royal marsden for clinical trials to see if i am suitable. Has anyone any idea about this and have any of you been put on the trials? I noticed a couple of you donba abd nicky are already there is that because its your hospital or are you on the trials. I dont know if hes just sending my notes hoping or if there is a trial hes looking at. I will have to wait and see.
Overall im happy and positive. Ive been on this chemo before and it knocked the cancer back on the liver ,breast and bone. Also i only had a few side effects with feet abd hands burning.
Thank you all so much for thinking of me its a really lovely feeling when you sign in and read all your messages.
You all have your own battles and are so brave. I feel very numb and have from the start ive only had 2 crys since my diognosis.
Its like its not happening. Weird or i am lol.
Probably more like it. Im going to my local bc meet up group on thursday. Its in poole if any ladies in dorset or hampshire fancy going. I have only been to one but it was very informative. this one is on side effects. I shall impart my wizdom on you on thursday lol.
Sending you all love and hugs xxcxc
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Evening Natalie , thanks very much . Your TM looks amazing !!! Well done you !!

fingers crossed CT will be good too.

Take care 

Donna xx

 

 

 

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Evening ladies, sorry I've not been on for a while I've been having a little break from the forum, it really got to me the loss of Marirose and Ellie (as I'm sure it did most of you too!)

Anyway, I hope you are all keeping well!!

Donna, welcome to the forum, sorry to hear things are not great at the moment, there is always someone on here to give advice or even to just sound off to when everything gets a bit too much! good luck with your treatment. 

Well it's onc appt Thursday for CT results 😨 so the usual jitters have kicked in! But I did ring my bcn last week for my TM results and they are now at 19!!! I was so pleased to hear that, but don't like to get too excited until I've seen onc for CT results! 

Take care ladies, hugs Janette xxxx 

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Hi Donna

Have replied on your other thread. I hadn't seen this post from yesterday so weren't aware you are at The Marsden - they will I'm sure sort out the best plan for you. I had a second opinion there last week and they are certainly cutting edge with what they can offer, should my current treatment not work or fail in the future. One of the recommendations of the senior Prof there (at the recent oncology conference in Copenhagen) was the importance of a re-biopsy therefore I am sure they would be open to that suggestion should you want to request one.

Good luck and let us know how you get on. We are all in the same boat here, all with SBC and the uncertainty and worries that it brings us and our loved ones. At least here we can rant and explain how we are feeling knowing that there is complete understanding from you fellow SBC friends.

Nicky x

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Hi Donna
Taxol is a very effective drug and you can take heart from that

Have got liver and bone mets , stable st last MRI but know what it is like to have Tims risexx hang in there.. take a big breath and watch and wait..... you may be surprisedxx
Love and hugs, Moijan
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Hi Paula, many thanks for reading my message . I'm glad it's at least given you some positivity.... we all need plenty of that !! It's strange how we all have treatments in different formats !! Each onc has their own way I suppose. I'm very lucky I've always been at the Marsden from day one an I think they have always helped me manage the ups an downs . However today was different ....an I truly feel like the very first time . Hopefully I will get my fighting outfit on tomorrow...Sounds like your doing well ....an managing treatment well which is so important. I will be watching out for your updates in future....

ive cried all day an feel totally exhausted so hopefully I may get some sleep ....

Thanks for taking the time to message me an sending u buckets of positive thoughts.

D

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Hi Donns

Wow, your history has given me hope that you are surviving SBC for so long. I have extensive mets to lungs, liver, several lymph nodes and bones. Unusually (I think) I had the lung and liver tumours 1st and then bones a few months later.

We are all different, I seem to be doing your treatment in reverse! After Tamoxifen for a couple of years i switched to Letrozole and Zoladex when progressed, more progression switched to Exemastane and then Xeloda since last June.

I am not one of the many ladies on here that have had liver mets for years and there are a few but it's 15 months since diagnosis and I feel better now than I did on DX. The liver and lung mets are asymptomatic and give me no trouble and I've had size reduction on my last scan.

Everyone is different and responds to different treatments. DO NOT LOSE HOPE, there are loads of treatments out there and I'm sure your ONC has the situation under control.

I know evey time I've had progression or changed treatment I've had a good cry and a few days of doom laden thoughts but once treatment is underway and something is being done I start feeling better and more in control.

Sending you a big hug at this scary time and wishing you all the best.
Paula

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Hi, thanks for the reply anyway. I'm hoping there is someone in a similar situation that has had some positive experience!!! Hope your treatment continues to go well. An thanks for your support..feel like I'm falling to bits!!

D xx

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Donns58, It is a shocker when the cancer us on the move and involves another area. I think we all want to keep it contained where it's at. I'm sorry but I don't have experience with liver mets or bone mets either. Only what I have read. I have lung mets and one bone met in spine that is stable. Don't panic though, there are lots of treatments still available. FF

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Hi , thank you so much ... just hearing from someone seems to help. It's so hard !! I really hope your scan goes well.. I will look out for your post re results . Double hugs to you

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Hello Donns
Welcome to the family of kindness and support ...I have extensive bone Mets but up to now have been ok with liver and lungs but I'm due for a scan soon ..so who knows ?
It sounds like the treatments you have already received have worked well and there is no reason why taxol shouldn't work as good.
I'm hoping that as this is a busy thread that you will get a lot of support and advice from ladies that know more than I do.
Carolyn xxx
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Evening ladies, I haven't posted for a long time but I'm hoping someone out there may be able to tell me about a similar experience. I was originally diagnosed in 2006 with bilateral breast and lymph nodes infected. I had 4 A&C and 4 taxol and 5 years tamoxifen. This was then followed by bone mets and I had Xeloda for 3 and a half years. This was followed by extremesane and everolimus for just under 2 years. There's been some ups and downs and some radiotherapy on the way. However all in all not too bad... over the last few weeks my tumour markers have gone up so my onc suggested we scan. My last scan was October and all looked okay. I got results today and my bones are active again and there are a lot more sites. It's also in the middle of chest/lymph in lung and there are quite a lot of smaller tumours in my liver. I was expecting a flair in the bones or lung and it's totally knocked me backwards that it's in the liver too. My onc has suggested I have taxol from next week and to be honest I feel like I've been given a death sentence! I'm petrified and I feel like I did on day one. I'm just worried this is it. I know there are some ladies that are very experienced in the bone mets section but not sure about liver too. If there is anyone who has any experience, I would really appreciate your feedback thanks for reading my post....hugs to all x

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Hi Maldives! How did you get on today? Thinking and praying for you xxxx

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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

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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

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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

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 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

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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