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Bone mets - please join in

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Re: Bone mets - please join in

 Sharon, Hoping you are hanging OK and pain free! Take care of you! Spoil yourself with a little retail therapy! FF

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Re: Bone mets - please join in

Hi Carolyn, I'm feeling a little better than I did this morning, I've stunk the house out with Olbas oil 😀. 

Think I've answered your question about excerise in my last post to Bandit? I have mets in my hips too and walking helps keep them from stiffening up I think. 

Hugs Janette xxxx 

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Hi Bandit, no I don't think there is a way of accessing what was covered at the awarness day. Really the diet and exercise discussion was the usual, everything in moderation plenty of fruit and veg etc. I get your concerns regarding excerise and breaking something, I don't do excerise in regards of going to the gym but I do go for regular walks, I asked my onc about my walking and if would cause ware and tare on my hips and she said no it wouldn't but just know your limits  (listen to your body!) It's good to keep things moving. 

Hope this helps. I see your already on the combination of letrozole and Palbociclib, do you have anymore info about it you could share? 

Hugs Janette xxxx 

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Sharon
Are u ok? Radio silence for a few days so hoping u r just resting from chemo this week.
Hugs xxxx
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Hiya Jeanette
Sorry you have the sniffles ..horrible ..do u take your vitamin c everyday ? I'm due my flu jab next week and hopefully it will help.
That day at christies sounds good and hope u have learnt some good tips . Think we are all waiting for ibrance at the moment as the next line treatment after letrozole .
Do they recommend exercise with hip bone Mets ..I work on theory if it hurts ..stop!
Hugs xx
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Hiya bandit
Having bone Mets is the fear factor of breaking something isn't it? I have extensive ones but have had ten monthly bone jabs now and hope they are stronger !!
Last winter I lived in fear of slipping on ice or something ..so wore rubber sole boots and shoes etc etc.
Xxx
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Conference sounds fascinating.  I have just started Ibrance with Letrozole on a trial which means taking supplements or using alternative/complementary products is VERY limited.  Is there some way those of us who did not attend the conference can access the diet and excercise information?  I have bone Mets and fear doing anything at this stage that may to break a bone or snap a rib.  Hope you are able to make good use of all the information you have been given.  Bandit x

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Morning ladies, hope everyone is keeping well......and warm! It's that time of year with the weather changing, I'm full of a rubbish cold! Snotty nose, stinging head, tired the full monty....oh what joy! 

Well I went to the Secondary Breast Cancer Awareness Day at The Christie on Thursday and was a great day, very informative and helpful, met some lovely ladies too.

There was a talk with a clinical researcher which was really good, she spoke about Palbociclib  (Ibrance) and how it is now being used along side letrozole, trials show that given together the survival rate increased! (Something I will be bringing up at my next onc appt in a few weeks).

There were also question about cannibis oil and it's benefits, however there is still not enough evidence to support starting any proper research. 

There was lots of other things discussed too like pain control, diet and exercise, emotional support etc. 

Hugs Janette xxxx 

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Re: Bone mets - please join in

Good afternoon Sharon
How are you feeling today ? Hopefully with a bit of a chemo break you are a little bit better. Dull drab weather today doesn't help the mood though.
Hugs xxxx
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Thanks FF ..our clocks change too later this month so we get dark nights (boo hoo) and lighter morning's.
Hope u wake up in a few hours to loads of cards and pressys .xxx
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Re: Bone mets - please join in

Carolyn you are 5 hours ahead of me in time for now. Soon we change time, called daylights savings time...we fall behind an hour...then in the Spring we spring ahead an hour.

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Re: Bone mets - please join in

Hello Leemas

I remember you as Sameelee as stresshead has said rant and rave as much as you like she has given you good advice.

You say you are starting Capecitabine you will find a good thread on Treatment and medical issues you will find lots of information regarding side effects and lovely ladies that are on it.

Try not to worry too much about your mets I have many mets in bones ribs liver and lungs also many skin mets. I will not let the cancer get me down I have nearly done 4 years and intend staying here a lot longer. I have been living with a tumour in my sacrum and I have cancer cells all up my spine since I was first dx so all I will say is watch for pain in the spine and inform your onc we have to be careful of spinal compression.

But try to think positive and don't let the dreaded 'C' get you down.

 

Love and (((((hugs))))   xxx

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Hi Carolyn thanks it was tough last year wouldn't of thought I'd be back to work and the gym I must admit going to the gym has helped loads with the aches from the letrazole. The summer house was a waste of money we never went in it but it looks nice haha. Take care love Julie x x x
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hi ladies, thanks for your tips on the 'head/neck' problem. Unfortunately, this doesn't feel like a stiff neck..it is a wierd sensation that is always there sort of at the side but creeps up to the base of my skull at the back. That is what's worrying me. I havent had headaches as such but sometimes when i lie down my head feels like its 'swimming' and about to explode...so hard to describe it. Intersting to hear difering opinions on massage...i was always told to avoid it as it cold spread cancer cells. I have had reilki and refexology bt woul;d love a massage. Wii ask my therapist at my next visit.

Leemas...welcome back. Dont beat yourself up, its natural to feel down, coping with what we have to. I too feel like you..never seem to be getting any good news but you will find some if you look hard enough i'm sure...my last bit was being told i was stable. Its horrible living from scan to scan especially when you get symptoms in between. It is always hard to be optimistic but try not to dwell too much...fill your time with people you enjoy being with and doing things you like...give the treatment time to do its stuff......oh, if only i could practice what i preach!!!   Just wanted you to know we are all here for you..have a rantand rave any time you like. xx

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Re: Bone mets - please join in

Jeanette, Glad the MRI of your head is clear. Hoping you can find answers to the headaches.

They have a massage therapist at my cancer center. I would think  gentle massage would be OK.

 

Leemas, Post as often or as little as you need. Rant if you need, support where you want, ask questions, share info, whatever makes you feel better! 

 

Hi Julzd!

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Re: Bone mets - please join in

Hi to everyone here; I signed on ages ago, when first diagnosed with bone mets ( a year ago now) with the username Sameelee3. Have been popping back and finding out loads of information from you all, but I think, if it is ok with you all that it's time I joined in properly. I was taking Exemestane for 8 months but it wasn't working, so now have the original spine mets, plus new ones that are causing numbness in my right foot. Also in lung and liver; feels like it is progressing quite fast, which is a bit scary.... Well, very scary to be honest! 

Have taken my first two lots of Capecitabine today...... I know that some of you are taking this chemo, so it will be useful to share. Oh yes.... I was told yesterday that there are cancer cells in my spinal fluid; had a lumbar puncture last week. 

If I analyse all my oncology appointments since diagnosis, I've not had one piece of good news...... Am finding it hard to be optimistic at the moment. 

Best wishes to you all, 

Leemas

xxx

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Jultz
It's good to hear from you and that after a year of non stop chemo ..you are back working and moving on.
Hope u enjoyed the summer house and that it hadent just become a " dumping ground" for stuff that doesn't fit in the house though !! Hubby has a man cave but keeps the keys in his pocket 24/7 so I can't dump things in it.
Hugs xxxx
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Hi Marirose, yes The Christie is one of the leading cancer hospitals in europe. Looking forward to going, I have been fo - warned by my friend though who went last year that as well as being really informative it can also leave you feeling a little down as the reality of what we are living with can hit home! 

Hugs Janette xxxx 

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Re: Bone mets - please join in

Janette

Your Living with Secondary Breast Cancer Day at Christies sounds great. I read somewhere that Christie hospital is number one in the country. My chemo unit ring there for advice instead of our local Cancer hospital.

I hope you find it very useful and relaxing Love and ((((hugs))))  xxx

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Hi Carolyn I'm doing ok thanks. I've been busy with work I click on and still follow you all I hope your all doing ok and Sharon hope you get sorted and feel better soon I've been thinking about you. I've just ate some oreos haha love Julie x x x
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Jeanette
Glad to hear from you but sorry about the headaches and neck pain.
I bought all new pillows for the same reason too ...it's been five weeks since my denosumab injection ..it's due next week which will b six weekly and I have felt so much less achy this week or so ..I just felt that four weekly was just too much for my bones ..and needed more gap between it . I haven't had any neck ache for a couple of weeks either .
Hugs xxx
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Yes will do. 

Meant to add in my last post, I'm off to The Christie hospital tomorrow for a Living With Secondary Breast Cancer day, it breakout sessions including Living with uncertainty, relationships and communication, fatigue management, and a few other different sessions. iv signed up for the fatigue and uncertainty one. There is a talk from one their treatment and development research Drs , a Q & A session. 

Will let you all know how it goes. 

Janette xxxx 

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Yes I've got mets all over and I asked my onc earlier this year and he said fine, just tell them to go easy on any areas that are painful.
But sometimes I think my onc is a bit too chilled so defo ask yours first! Helen cx

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Hi Helen, I have thought about massage but I'm always a bit wary because of my mets?? I know I have them in my spine but don't know to what degree  (I've never wanted to know) I see my onc later this month so I think I will ask her about me being able to have massages. 

 

Hugs Janette xxxx 

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Hi janette
Have you tried massage on the neck. I've suffered for years with neck trouble, my discs up there are. A bit worn but nothing they would do anything about just natural wear and tear. The thing that works best for me is a neck and shoulder massage once a month. Takes away the tension that build there xx

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Re: Bone mets - please join in

Morning ladies. 

Hi Carolyn, sorry I've been quite just been a bit busy lately plus I'm still struggling with these headaches. I do read all the posts (bone thread)........I don't like areos either 😀. 

Hi Sharon, hope your doing ok, you've been through the mill just lately I'm sure things will turn around soon for you  (((())))

Hi Stresshead, as I've already said to Carolyn I've been suffering with headaches for a while now, I've had an MRI on my head which come back clear of anything sinister. I have had a stiff neck for months too, blamed it on my pillows so bought some new ones but I still have neck pain. 

Well off to work now ladies, take care ladies, keep those bones warm now the cold weather has arrived! 

Hugs Janette xxx

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Sharon
How are you feeling today ? Day at a time ..we are all sending cyber hugs to you.
Jeanette and Julz
Assume radio silence is because you are both well and bungee jumping, marathon running and pole dancing !!!!! Ha ha
Hugs xxxx
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Hiya stress head
Opening my hugs cupboard again and sending you loads for clear scan results and to put your mind at rest .. I think your name sums us all up over all these things that happen to us .
Everything is a nightmare ..mine very little but for the 2nd month they haven't got my brand of letrozole again and I hate the cheap brand I get palmed off with .
Hugs xxx
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Sharon, hope you feel a little better now and strong enough to have yoour chemo. I fyou go ahead with the drain i'm sure that will help. Will be thinking of you.

Carolyn...you're not on your own...i also hate oreo's!!

On a more serious side...please can anyone help me, especially those of you with neck, head, brain mets.

For the last 2 months or so, just as i was at the end of my chemo, i developed a neck pain as thogh i hadf slept funny or had 'cricked' it. having lasted this long it is now a major concern, especially as my skin mets have also broken down. I told my onc and he added my neck to my next ct scan which i have just had. I dont appear to have any other problems...vision, balance, swelling, incontinence, major headaches and i cant feel any lumps.It is just like a dull ache which becomes more painfl if i stretch my neck to the sides.

I am terrified that i have have spread to brain/meninges and wondered iof anyone experienced this symptom.

My Dr at loros tolsd me to try painkillers but nothing has really had any effect.

I would be grateful for any info. Many thanks ladies. xx

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Sharon,you willl be OK tomorrow, I am sure!!! Get that drain and enjoy a flat tummy, hope bloods will be fine and chemo will be working, come back and say what it was like tom evening. We will be waiting for you

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Scratch. Hugs for tomorrow xx

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I must be the only person on the planet that doesn't like oreos.. ugh. My work colleague used to have an addiction to them but even on the 3pm munchy time.. I couldn't face them!!!  

Best of luck with hospital tomorrow Sharon. 

 

Hugs xxxx

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Carolyn, Toes  are tootsies here too !

 

Stacey, I love the filling the best in the Oreos! I don't know if you have them, but they make double stuffers now. Double the filling! They also just came out with thin ones, hardly any filling,  lemon cookie and lemon filling, vanilla cookie and vanilla filling, chocolate cookie and mint filling, all very good! Hate Good n Plenty, love red hots, never heard of Sen Sen or Ju jubes, liked cracker jacks and the prize!

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Tootsie rolls are only vaguely chocolate.  Like Oreo's, chocolate but not exessively so .. they only recently entered the supermarkets here in the U.K.  Always hated the filling and used to get rid of it and then eat the cookie parts.  Now, if I could get hold of Good and Plenty and Red Hots ... sweets from my childhood, that would be something.  Probably stopped making Sen Sen and Ju Jubes too ... not sure about the spelling but remember them well.  And Cracker Jacks ... shook the box to get the "prize" before consuming the contents.

 

<sigh>  

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Well FF
that's education for me ..never heard of tootsie pops ..when u mentioned them wasent sure if you ate them, drank them or put them on your feet !! ( in the UK some of us call our feet ...tootsies!! Ha ha)
Definately on the menu now in cyber cafe !! Just for you but yum ..gotta try them now .
Hugs xxxx
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Re: Bone mets - please join in

Sharon, Get that drain girly. I think after you have it at least your tummy will feel better. I'm sure waiting for it while you keep rolling thoughts around about it is giving you anxiety. I hate that you feel worse on this chemo. Can you get palbociclib? I don't know if you are ER + and HER2 -. Do you have some one to go with you and be your advocate. It's just too hard to be your own when exhausted and in pain. I also think when we are going through the mill, that the oncologist say enough. They can give up on us too easily then. BIG HUGS!!

 

Carolyn, No tootsie pops in the UK? Do you have tootsie rolls?  Tootsie Pops are round suckers. They come in cherry, grape, orange and chocolate on the outside. Inside them is like a small piece of tootsie roll. It's a piece of gooey sticky chocolate.Please put them around the cafe!! 

 

Carolyn, I'm adding to this message. I just looked on Amazon UK and they have them. Lol you have pomegrlnate and strawberry flavors. Must be new. FF

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Carolyn .il probably still tune in next week..its like a stupid addiction
..and there's nowt else on tv ...x
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Sharon

I'm afraid that x factor is my guilty secret ..moan about it but somehow still tune in!!
Sharon was certainly on a high ..think I need a pint of what she was on.
It's all very much the same ..serious acts and novelty ones !! Probably see as good on a Saturday night doing karaoke at the local pub.
Hope u feeling a bit better.
Xxxx
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Carolyn wasn't x factor rubbish last nite..theres a couple of good singers
.when I watched boot camp there was some good ones they have made bad choices..and was Sharon drunk❓ ..haha...
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Hi all... quick mention about the Bristol meet up on 15th.... I've posted in the Meet-Ups group but wanted to give a last shout out incase someone has not heard about it... all are welcome of course :-))

 

Love to all and hope you are having a good weekend. Xxxxx

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Hiya Sharon.
I will b totally honest to you ..I don't think you can tolerate chemo on Monday either from what you are posting ..maybe a extra weeks rest from it will help you gain some strength but of course I'm not a medical expert or anything and its just my opinion.
Enjoy strictly come dancing if you are at home in Pjs. .I'm loving all the sparkle !!
Loads of hugs xxx
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Also I don't feel well enough for chemo
We will attend clinic monday but I seriously have declined since I started this chemo so it cant possibly see how it's doing anything

So wait for Monday now 😻my husband agrees..x
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Ha ha FF ..what is a chocolate tootsie pop? We will have to include one of those on the menu in the cyber cafe just for you.
One step ahead of you ..got new slippers now ..so nice snuggly toes. My old ones just got smelly !!
Sharon
Visitors and hosp visits are tiring so have a nice quiet time weekend ..hopefully you will feel a bit better ..don't know anything about drains but sounds good as when fluid builds up ..you can just turn the tap on ..get rid of and a nice flat tum again!!!
Xxx
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Hi all no I'm kind of into the unknown at moment.had chat about permanent drain weds.had bloods done yesterday and chemo is due on Monday.I dont know how long theyl leave me waddling around with big tummy.find out more Monday...i suppose it will be just something like a chemo line it doesn't drain out until you turn it
Yuk❕ ..i can still change my mind..just sitting around today had two hospital visits and lots visitors.having a quiete day.x love to everyone.x😻
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Hi Avrelia, Maybe sucking on a hard candy would help. Yes it is sugar and calories but not as many as other choices. I'm particularly fond of red hot cinnamon kind or a chocolate tootsie pop! 

 

Carolyn, I think you and I are the PJ queens. I need a new pair of slippers mine look like a rat was chewing on them! When I'm cold I throw a big old baggie hoody sweat shirt over top! I look like a bag lady!! It's comfy though!

 

Sharon, You are in my thoughts! FF

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Sharon, hope you are feeling better..i assume you have had the drain fitted??

Avrelia, sorry to hear yoiu have not been feeling so good...feel free to have a rant whenever you want, you wont 'get us down'...

Carolyn, i'm with you..it has got colder quickly but its a brilliant excuse to snuggle up on sofa in pj's any time of day/night...not that we need an excuse.

I agree it does make you 'pig out' more but hey ho! I have put abot 2 stone on since my primary diagnosis..i dont like it but as long as i'm ok its not really high on my priority list..my answer is just buy bigger sized clothes and dont look at the label. The worst thing for me is being very obviously 'deformed' up top. One reconstructed boob is fine, the other has been eaten away and is just a hard lump...looks like something from a horror film: thats the worst thing about skin mets, visible and disfiguring and very limiting with clothes choices..gets you very down sometimes but just have to get on with it...again much easier at this time of year when its baggy jumpers and not skimpy tops!!

Loveto all. xx

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Hello Avrelia, sorry to read you aren't feeling brilliant (if you ask me, it is the cleaning making you feel bad! Smiley LOL).

 

As for the hunger and eating - I get so hungry on Cape, and have put on quite a lot of weight since last Christmas. Not sure how I'm going to shift it!

 

Sharon - sorry I haven't replied to you before now - however, everyone else has already said anything I could say, only better than I could say it! Hope you are feeling a little better now.

 

Hugs to all. Barton.x

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Hello avrelia
Sorry you are not feeling too well but unfortunately chemo is accumulated and gets a bit harder every cycle. The hunger is not a normal feeling but a must do !!
When I had FEC years ago my sister called me 'gizmo" from the film gremlins as when we shopped ..it was cafe to cafe rather than shoe or clothes shopping.
It will get better when u finish and get back to normal again and I found the extra stone I gainned fell off quickly.
So in the meantime if u fancy a cake, biscuit or pasty ..enjoy !!!
Hugs xxxx
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Hi Carolyn and everyone,

Yes, it is getting colder although I should admit that I am having my socks and swetashirts since last week, today feeels a bit warm but may be because I am trying to clean aroundSmiley Happy

Have not been so well recently, although as compared to you Sharon, I cannot say I am bad at all. Still I admire the way you are coping, I do not think I will be that strong, but you never know with cancer....

Anyway head up, do not want my bad mood to be passed to anyone. 

I have been eating too much recently, do not know why, to be honest, when I started feeling sick after chemo, apart from the antisickness tablets, food was making me feel better. I need to find something may be like a sweet a mint in order to stop eating that much, since gaining weight is not good for that bloody thing. And may be I will have to move more although that type of weather only makes me want stay in fron of Telly.....

Hope you are all fine ladies