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
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!
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
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.
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
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
Evening Natalie , thanks very much . Your TM looks amazing !!! Well done you !!
fingers crossed CT will be good too.
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
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.
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.
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.
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!!
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
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
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
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
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.
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.
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
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
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
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
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
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.
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!!
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.
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.
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!! 😥
'Ohhh - you put your left leg in, your left leg out, in out, in out, and shake it all about'🎤
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
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
and...we all dread being told theres nothing else for us......but there are new drugs bouncing in off the horizon...take heart xxxx