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Bone mets - please join in

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Re: Bone mets - please join in

Morning ladies, it's awful weather here too this morning.  

 

Jelly Tot I am so sorry you are feeling so down at the minute and sending you a big hug.  What about planning some nice things again but start off by making plans for a few weeks ahead to begin with until you start feeling stronger.  Keep busy if you can jelly tot and gradually you may find things feeling a bit more normal again.

 

You are so young and have been cheated out of so much and I truly feel for you. Xxxx

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Jellytot

You are not alone I feel exactly the same as you. We too are planners and were looking forward to all the things we were going to do when we retired, when we had grandchildren etc and now I just can't see that happening. My husband and I have really down days and other days we are as normal as can be and enjoy life. It is such a rollercoaster. Sending hugs Wendy x
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Morning ladies, absolutely horrible weather here this morning!
Nicky, so pleased for you, bet you are so excited and grateful!
Jellytot, really sorry to hear you are struggling, just want to say is please stay strong, sending you a HUGE hug ((((((()))))) xxxxxx
Hugs Janette xxxx
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Hi Nicky.  So pleased to hear you have a new grandchild due.  Wonderful news!   My daughter was expecting my first grandchild 16 years ago, during which time I was diagnosed with primary breast cancer.  Then my second grandchild was born four years later.  I thought the cancer had gone and I could enjoy my life again.  Then secondaries in my bone were diagnosed in 2009.  Two years later my third grandchild was born.  She is now 6.  I dont know what will to me in the futur but the cancer has certainly made me want to spend as much time as I can with them.  As you say it is the uncertainty and now being able to plan for anything.  Life is so unfair.  My best friend had breast cancer 22 years ago.  Just had a lumpectomy and radiotherapy and that was it.  She is fine.   I am feeling very low at the moment.  You are not alone. Xx

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Jellyfish, You have reason to mope!! You were given a rotten deal. I know it's hard to plan. Why don't you start with some small things. Maybe just another couple over for a movie, back yard game and a few drinks, maybe a comedy night somewhere, a yard or garage sale, pick pumpkins, craft night with friends. Just throwing out some simple ideas. Hugs FF

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Hello All, just checking in.

 

I'm doing okay side effect wise from my trial drugs.

 

However, I am having awful hot flushes and night sweats and not sleeping. I'm still struggling to eat and have lost a third of my body weight since May.

 

Mentally I'm not doing well. I'm so so sad all the time. I'm only 34 and I feel like my life is over. I know I'm on some amazing drugs but surely they are just prolonging the inevitable. I don't have children and I feel robbed of a life I wanted. I don't know what the point is any more. I feel so dreadfully sorry for my wonderful husband. I'm so low all the time and I don't think he knows how to cope (I certainly don't). We were both always such planners and now I don't feel I can plan anything at all. I'm sorry for such a mopey post xx

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Nicky, Every special event is even more amazing when we make it to them. I have got to see all three of my kids move out and purchase homes. My son and daughter graduate college. My daughter get married. Oldest son doesn't want to get married. Other son doesn't want to get married but is in the solid relationship. We really like her. They say they are forever just not tiring the knot. I never thought I would see any of this. Every event I make I want more!! 

 

Congrats on the little bundle excitement! Either way football's or ballet shoes will be lots of fun. Jus t remember even if you aren't capable of chasing after the little one, there is plenty of things to do and teach. You can do all the fun parents hate to do, play dough and paint! FF

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Hiya nicky
How exciting for you ..a little bundle of joy to cuddle and love ..do u know if u need to buy football boots or ballet shoes yet for it?
It will pull at your heart ...and your purse strings! !
Xx
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Yes, Nanof3 I do think that!  Occasionally, ie during a long period of stability, I get lulled into a false sense of security but then the bl**dy disease comes back and bites me in the bum! Having said that in 2013 when I had progression to my liver I really did think I had weeks to live.  I was struggling so much with heart damage caused by FEC chemo (in 2008) and there was no-one to help deal with both of the life limiting conditions I had.  Having been referred to The Brompton cardio-oncology unit saved my life I think. So, I've had at least 4 'extra' years than I expected - even though I want more - as you have said.  Basically this disease robs us of our future, even though I have learnt to live in the present it's still tough on me and my family, as it is with all of us and our loved ones.  On the plus side I am hoping to welcome our first grandchild into the world any day now - another event I never expected to be involved in when I had my mets diagnosis in 2008.  At least this disease teaches us to treasure these moments.

Nicky x

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Hello nicky and nanofthree

You both are such an inspiration to us here ..it's good to hear ..it's nearly two years ago now I sat in oncologists room to be told mine had returned after 11 years and I remember coming home and getting "my paperwork" in order so to speak. I'm still at letrozole stage but good to hear there are successful treatments to follow....although not so easy to tolerate ones !!

Anyway where is everyone ? It seems to be radio silence here from our regulars ..so stop reading and drop in and say hello ...
☺☺☺☺
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Hi Nicky.  No problem.  I have been reading up about eribulin.  I will mention it on Friday when I am at the hospital.  Do tell me, after,living with such a long time with mets , you since 2008 and me since 2009 do you get that dread that time is running out.  I so want to be here for my grandchildren.  I know I have been blessed to have these years but at 68 I want more!  My mum lived till she was 80 and I want some of that. Xx

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Hi Nanof3

I realise my reply was a bit worrying for you if you go onto eribulin. I have a friend with secondaries who has been on it a couple of cycles more than me and hasn't used the cold cap and although her hair thinned it's nowhere near as bad as mine - I just got unlucky as its not a chemo that states that you will definitely lose your hair. It is well tolerated and I have found it no worse than Capecitabine which I was on for for about 18 months back in 2013. But good luck with the current treament and hope it keeps working and your bloods don't get too hammered.

Nicky x

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Dear Bibi44 and Nicky 08.  Thank you for your replies.  I feel a bit better about the Paclitaxol now but will certainly mention the Eribulin.

 

good luck if you do go onto Palbo Nicky.  It has now been too bad, just mild fatigue plus of course the hair thinning.  At least it saves on having to sit there having IV chemo which is a real bonus.  Good luck to everyone changing treatment at the moment. Xx

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Hi Nanof3

I don't have any experience of pacitaxel, although have done its 'sister' chemo docetaxel, but that is a bit harsher I think. I have also been told my bone marrow could be getting compromised, maybe its because of the number of chemos etc that you and I must have gone through (I'm over 9 years with bone mets, the last 4 with liver mets as well).  I don't have any words of wisdom but in some cases a hormonal can be re visited (or at least I've seen it happen on this forum) so maybe it's not all chemo from here on in.  I'm due to come off eribulin soon, because of the bone marrow possibility (it hasnt actually been compromised yet but there's a feeling that it might) and go onto fulvestrant and possibly Palbociclib so it doesnt sound like its going to be any easier on the body and bloods in particular from what you've said.  Eribulin is another chemo that might be suggested?  It is a lot easier on the body than some and it does seem to be giving good results even if, like you and me, we've had several different treatments already over the years. I cope with it Ok but do need the gcsf injections on 3 days of the cycle and have used the cold cap (yuk!) but still lost about 50% or more of my hair and now have no eyebrows or lashes - great!  That has never happened before on any chemo so I'm quite surprised, I've always managed to hang on to them even when I've lost all my head hair. Hope this doesnt worry you but just wanted to add my experience.

Nicky x

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Nanofthree I didn't have too bad a time on paclitaxel, but I had the weeklies which are known to have very few side effects, esp not much bone marrow suppression. It's not like FEC or that type of chemo at all & my hair grew back whilst on it. I did do the cold cap though. The clue to the downside of weeklies is obviously in the name ... you are at the hospital every week. I used to have bloods on Fri & Pac on Mondays, to save hanging around, but it's wonderful to just keep living life as normal rather than being in that chemo bubble. I gather 3 weeklies are more like proper chemo. Good luck xx
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Bit quiet round here.

Autumn's here.

I'm 10 months from finding out I have bone mets. I am well used to the diagnosis now but it really has taken me this long.

Pippin

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Sorry Nano!! I haven't had paclitaxol. Let us know how it goes! Big hugs!! FF

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Hope you dont mind but one other question to everyone.  Do you know what happens after Paclitaxol?  In other words, can you revisit a hormonal or will i be on chemo for ever now?  Horrible thought.  Xx

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Hi Carolyn.  Hug gratefully accepted!!!!!!!!  I know it is a shock having the prospect of 'real' chemo.  I had such a rotten time with it 16 years ago when I had my primary.  Cant face the thought of it, let alone losing my hair again.  Ugh!!!!!   Take care. Xxx

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Hello nanofthree
Oh dearie me ..thought I would just say a Hello but I don't have any answers ( as usual) ....both funny face and still here have experience of this regime so hopefully they might be able to help.
Maybe you need to chat to bcn ( if u have one ..I don't! ) or oncologist. ...
It's always hard having to face the big guns chemo after taking the gentler treatments .
Sorry not much help but I will send a hug xxxx
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I havent posted for ages.  Just getting on with life but now I need some advice.  PLEASE!!!!!!  Into year 8 with mets to bone.  I have had all the hormonals, plus Capecitabine and have now been on Palbociclib and Faslodex for 18 months.  Feel ok on this, the main problems being fatigue and hair thinning.  Since April I have had four blood transfusions due to low red cell count, plus my

white cells always fall at the end of each treatment and have to be helped up again with gcsf injections.  The hospital say that because my bone marrow is suffering I will maybe have to go onto Paclitaxol, something I have been dreading.   Does anyone have positive experiences of this drug.  Also does anyone know of any other reason why the bone marrow could be compromised.  I have already gone downmthe leukeamia road.  I get blood results next week.  Just dont know where to turn.  Nanofthreexxxxx. Thank you.

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Hello ..Maldives
Just popped into wish you all the best for tomorrow and hopefully it will help and be a quick procedure .
Hope everyone is enjoying the beautiful sunshine here today ...Im off for lunch with Barton and Bon and yes cake will be involved .
Hugs xxx
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Maldives, The nerve thing sounds painful and annoying!! Wow, for being able fix it in 15 minutes. I would definitely sign up for that! You can do America!! I know your meds are making you tired but I'm sure this nerve pain and hubby not being home is playing on you too. Once your "Rock" is home you will be able to handle it! Depending on where you will be here maybe we could meet up. Wishing you the best with your procedure! Rooting for you!! FF

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Hello Maldives. .fatty fatty bum bum

I shouldn't worry too much with the weight at the moment if they are keeping you going ..I expect they will start reducing them soon ..
My hubs takes them for chest infections and he seems to balloon very quickly and eats non stop like a little gremlin.
I'm glad u have had the op explained to you ..sounds like it will b quick and u will be asleep mostly ..nerve pain is agony so if this helps ..then you will be a lot more comfy
If the chemo is knocking you for six ..maybe they would reduce the dose a little ? But I'm not an expert on these things ..
Hugs xxxx
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Hiya Alex
Yes guessed it was herceptin ..it's a magical treatment for lots of ladies that are her positive but sadly a lot of us are negative for it so have to rely on hormones /chemo.
I'm sure your posting will cheer up lots of ladies reading this though.
Xxxx
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Hi ladies. Thanks for your support. I know I'm stupid to Google things I should know better. I came across it by mistake then one thing lead to another giving me a terrible weekend of worry. I spoke to my onc nurse today and the metz they are talking about is in my jaw which I know about and has been there from the beginning although not so much. The treatment is for neuralgia pain in the face caused by pressure on the nerve.
From what I can make out I'm put to sleep then they wake me to see if the pain is still there then they put me to sleep again. Clever stuff. It only takes 5 - 15 minutes to do the procedure and there is no cutting involved. I think with that and the new chemo I was just overwhelmed. My hubbie is away too which doesn't help as he's my rock. I was planning on going to America on 20th September but there's no way I can go on this new chemo. It's knocked me off My feet. The fact I look like a sumo wrestler due to steroids is not helping with my legs. Size12 to 18 in two months. Hey fatty bum bum. Lol.
Anyway enough rambling. Thanks once again you lovely ladies. Xx
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Hi Carolyn

 

I have been on herceptin and tamoxifen for nearly 9 year now.  I am glad I checked back into this forum although it has been upgraded a lot since I last used it, there is a good chance that I will end up posting stuff in the wrong place.  😀

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hi carolyn,

I should be so lucky ,doing all the things you mention,must be heaven ,even thinking about it makes me smile so thanks for that as have not felt like smiling of late ,so shall now go and just visulise what it would all be like.

thanks reneex

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Hiya Renee
Thought you were on holibobs ..hence your absence. ..sunning yourself on a beach with a pina colada and having sun tan lotion rubbed on you by a very fit adonis !!! Ha ha ...
Phew ..that was a hectic week for you but hopefully it's all good ..
Hugs xxxx
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Hi Carolyn  and all other ladies ,

I have not been on for over a week as last week had herceptin and perjeta treatment ,which knocks me for six anyway then heart scan ,followed by c t scan ,plus radio therapy treatment scan and start radio tomorrow for 5 sessions so have not known whether i was coming or going ,plus not looking forward to r/t at all ,but hey if it helps all will be good ,its because breast is weeping and bleeding outwards so have district nurse calling again,to make sure everything is as it should be ,if honest i am quite scared of this outcome as not opearable and no cure just treatable so keeping everything crossed at once even legs when on loo,i should be so lucky as to have two legs as may manage it then .

take care and love to all 

reneex

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Feeling very cross and annoyed with myself ..thought I would do all my ironing. .last item ..a brand new shirt I wore once ..yes u guessed a great big iron hole in the front !! Can't remember the last time I did that ..can't even put a patch over it saying idiot or numpty !! So in the bin it's gone.
😭😭😭😭
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Hello Alex
How could you stay away so.long from us !! Glad you have checked in again and welcome back.
Wow ..you are doing well ...assume you have the benefit of herceptin as your treatment plan?
Hugs xx
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Hi everyone,

 

i have not not been on this site for years.  I just thought I would check in and say hello again.

 

I was diagnosed with secondary BC in 2008. I have 2 mets in my spine and one in my hip.    It's HER2 and E/R receptive.  The disease has remained stable.  I worked full time up until last year, I retired in November 2016.  It's sad to see that some of the old timers are no longer with us however I am pleased to see that there are some familiar names as well.  

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Hiya Maldives

Everybody has a unique pattern for cancer and yours is very unusual ...the procedure planned must be a good one as they wouldn't be risking it if they thought it was a waste of time.
You don't say whether it's going to be done under general or local anaesthetic. ....general sounds best
As u go sleep and wake up ...all done !!
Special hugs xxx
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Hi Maldives, please try not to look into "survival rates" too much, this cancer lark is VERY individual and not one is the same!
Good luck today, I hope things go ok and they can explain things to you so it makes more sense.
Hugs Janette xxx
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Hi Maldives, hope you get some sense out of your onc nurse today. You shouldn't have to find out about such things by reading a letter. I hope all goes well on Saturday we'll all be thinking about you.

Hugs Bon xx

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Maldives...try and ignore the 'survival rate' stuff...we dont know how valid the research was and anyway...it wont help to think about that!

 

hope tomorrow goes well...poor thing you have had a lot of things coming up!

 

yes I was on Taxol, made me tired...give yourself some slack and rest upxxx

drink loads of water thoxx

Mx

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Hi. I'm feeling really rubbish at the moment. I have been lucky with side effects and I'm ashamed to say quite blase about the cancer. Some say it's my way of coping but I just think I've been lucky not to have had bad side effects. My cancer is very widespread throughout my body in the bones. Now in my liver too. My worry is the metz in the mandible and dental nerve.
Reading up on it I didn't realise it's got a low survival rate. I just thought it was a nerve thing they were blocking. I'm going to speak to my oncologist nurse tomorrow to find out what's going on as there has been no mention of this till I got a copy of my referal letter this weekend. I hope I've misunderstood the letter. Oh well what will be will be. Femur nails are ok but legs are not working side effect of the chemo.
Sorry to blather on but I can't talk to my family about this one yet. Xx
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Jellytot Hope tomorrow goes well and you feel good being back amongst you colleagues

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Maldives
It's been ages since we heard from you and it's good to hear from you ..I think last time u had just started cape and you were feeling very energetic walking your dog!!
Wow ..that's pioneering surgery isn't it but if it takes the pain away ...you will feel so much better.
I personally haven't any experience of taxol as a chemo but others here will have .
How are the femur pins ? Are you mobile still when you are awake ?
Take care ..and don't stay away too long this time.
Hugs xxx
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Ops didn't finish that.my new chemo is pacl itaxel (taxol)
It's knocked me off My feet. I'm so tired even getting out of bed is exhausting
I'm finding it difficult to everything.
Have any of you ladies had this drug? What was your experience with it?
I'm also having problems with my jaw. I don't know if you remember me saying earlier in the year Carolyn but it now turns out I have mets in the jaw blnd which is being operated on in Southampton on Saturday. It's a balloon procedure to block the nerve to stop neuropathy pain in the face.
I. Really scared about it as it involves Neuro surgeons going across my main arteries with a needle. It will leave me with a numb face but hopefully pain free. If any of you ladies have experienced either of these things I could reply do with some support. Thanks maldives CD
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Hi everyone maldives here. I'm still alive and kicking been busy trying to stay alive with all different treatments. I'm on a new chemo for me anyway called paci
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Hello jellytot
Phew glad u can restart the drug again this week ..unfortunately being such a new treatment there isn't going to be much support with side effects ..I think you maybe might have to Google the drug and side effects/ results of trial etc ....
But we can help with a bit of useless banter here ...that's the wasp problem sorted ...please no reports to cruelty to wasps club but ssh I have an electric fly swat which I zap them with if they even dare to come into my house ...I have a little wasp cemetery on window sill now ....
Xxx
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Another wasp hater here!

 

Hope you are all doing as okay as possible. 

 

I cant remember if I said or not but my QT prolongation has gone back to normal so I am currently on my cycle of being off the trial drug. On Friday I start it again, they haven't reduced the dose which has surprised me as I thought they would have done because of my heart last time. I just have to trust they know what they are doing but it is very hard and worrying.

 

ive not been into work since my diagnosis in May, they have been excellent with no pressure to go back and just asking me to work from home as and when I can. I've decided to be brave and try and go back tomorrow. It's a very small office with only 5 other people in. I usually start at 8am, but having not been up at that time for a while, I'm going to go gently and start at 10am I think x

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Isn't it strange that something an inch long wearing a yellow and black jumper can petrify us ...when we are all living day to day with treatments and side effects !!
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Yes...I am terrified of wasps tooxxx

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Hiya Moijan

Yep ..this thread has gone very quiet ...but with this weather ..wow why post here when we can all be out surfing ( or kayaking like ff)
The thing that spoils the great outdoors for me is wasps ..they are evil little devils ..I'm petrified of them so I've perfected my wasp dance now !!
Anyway. ..forgetting them ..have a good bank holiday ladies ...
Hugs xxx
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Hi Guys!

 

my apologies for the long absence. I was actually checking in regularly,but found very few people around for a while and ...became a bit busy elsewhere.

 

however, I think we all worry when one of us disappears.....makes us wonder if they are ok!

i am ok, but like Carolyn and Ff, find it hard to sleep and like ff I have been needing some space from my oh.

I do hope everyone is chugging along nicely?

 

 

MariaLouise, am so glad my words were helpful...life is a bit like that isnt it? I find that every so often someone will put something over in a way that really helps me......and of course on this forum we are lucky in having so many lovely ladies to chat with xxx. I hope things are going well for you now, am sure you will get some benefit from the drug too.

 

 I read some research about twentyfive years ago ( must be) by the 'Simontons' drs in the usa who ran groups for terminal patients and found that many of them lived far beyond expectations.....well we are a kind of 'group' 

arent we ladies?. And my guess is, this forum also extends lives.

Moijan💚💚💚

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Wow, great photo Bon. A definite plus side to the nights when we lie awake, I must check the sky myself when I'm lying there trying to get back to sleep. A good place to post it as its very uplifting and, as we know, we have a chat on the Bone Mets thread more than any so there's no reason not to share things like this. I have never joined the secondary private part of the forum partly because I think I'd have too many threads to try and track - it's busy enough at times on this part of the forum! 

Hope everyone is enjoying the sun this Bank Holday weekend, all the others have been a wash out if I remember correctly. OH and I had a great day at Carfest South on Friday, great weather which helped a lot, a good start to the weekend - now onto clearing out our bedroom and bathroom waiting for the builders to arrive on Tuesday - not so much fun.

Nicky x

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Hello bon
Lovely photo and yes ..as you don't sleep at least u saw the lovely sky ...
I had a good sleep one day this week too ...makes such a difference the next day ..never thought sleep would be a luxury !!
Xx