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Bone mets - please join in

Desi-2
Member

Re: Bone mets - please join in

Great news on your markers Helen hope you have an amazing holiday! Xxx
JulieD
Community Champion

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Great news for you and good newsd about your sister too. Now go and have a great holiday, looking forward to hearing about it on your return xx

 

rosie53
Member

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Helen you go to Disney and have a wonderful time...will miss you though!!!
hugs Janette x x
Tinkerbelle
Member

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Helen - have a wonderful time!

 

Tink x

nicky08
Community Champion

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Hi Helen
We will miss your cheery greetings every morning but you must keep away from here until you're ready to catch up with us all once you're back. Hoping you have a fabulous time, I'm sure you will, and remember to slap on lots of sun cream, your skin will be more likely to burn on Cape. Enjoy every moment.
Nicky x

2catlady
Member

Re: Bone mets - please join in

Good afternoon lovely ladies,yes George and I are off on our honeymoon tomorrow. Don't tell the press mind! George will have his Mickey ears on as a disguise. Lol.
Well ladies,I'm off tomorrow I'll so miss our banter and all your support. I'll not post until I get back as I want to forget about my unwelcome squatters for a while.
You will all be in my thoughts and heart. So keep well,stay strong,and massive hugs to everyone,you are all fantastic ,brave ladies,Helen xxxxxxxxxxxxxxx
nicky08
Community Champion

Re: Bone mets - please join in

Well I hope he got everyone's chores done before he headed off and he doesn't take too much time off for his honeymoon, he's got things to do when he comes back 😉
Nicky x

rosie53
Member

Re: Bone mets - please join in

Morning ladies, its a sad day for us ladies today..... George is getting hitched today!!!
Hope everyone is ok
Janette x x x
nicky08
Community Champion

Re: Bone mets - please join in

Thats great news Helen Smiley Very Happy and just what you needed to hear to make your holiday with Mickey even more fun.  It will give you the confidence in your new team and must be a huge weight off your shoulders.

Enjoy the sun and make sure you take time out to relax, hunting the mouse is a full time job out there!

Nicky x

Bevlaar
Member

Re: Bone mets - please join in

So pleased for you helen....you go and have the best holiday ever!! Its going to be fab. Will miss your posts but you'll come back a new woman! Great that you can swim safely too.
Enjoy!
Love bev xxxxxxx
carolsav
Member

Re: Bone mets - please join in

Thanks nicky that is very helpful and i understood it too! I dont know why i never thought to ask before. I think its because the only way i am coping is by a head in the sand approach which i realise is not very healthy.
Helen..have a lovely holiday...room for a little un?
Chocolates
Member

Re: Bone mets - please join in

Helen, have the most amazing holiday. We'll really miss you. Such good news re your results and your sister. At last you can relax a little. Now go enjoy yourself. Huge hugs xxxx
2catlady
Member

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Thank you ladies xxx yes,my crocs have been Minnied for Disney. Lol
Take care and huge hugs,Helen xxxxxxx
pam01
Member

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So pleased to hear your news Helen...you so richly deserve a bit of good news after the last few months! Hope you are packed...its great to be going away clinging to that good news!xx

bertie1
Member

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Wow Helen that's really good news about your tumour markers and also about your sister.Have a fabulous holiday and take plenty of picture.
Love
Kaye xxx
Lynnq
Member

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So pleased for you Helen......glad to hear that your sister is out of hospital and looking good

Take care...
belinda
Member

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Ah glad your sister's doing well. Minnie Ears at the ready I see. 🙂 x
2catlady
Member

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Hi,thank you ladies xxxx
Hi,my sister had her surgery yesterday and starts chemo in six weeks. She's looking really well and is home today. Thank you for asking janette xx
rosie53
Member

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Hey Helen thats FAB!!! So pleased for you, about time you got some good news, you go and dance around Disney girl : - )
By the way hows your sister doing
huge hugs Janette x x
belinda
Member

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Wow Helen that is fantastic news! Such a drop and so quickly! Hooray you were long overdue some good news. Have fun dancing on tables and swimming. 🙂 x
2catlady
Member

Re: Bone mets - please join in

Good afternoon lovely ladies.
Well saw onc today and my markers are down 200 ! After first cycle!!! It's the first bit of good news I've had,since being diagnosed.
He said he'll scan me after forth cycle as I'm having the three week break and they may rise in this time god I'm sooooooo happy . It's just the boost I needed,I never get good news as there's always a BUT....
Oh wow I could dance on the table.
He also said I can swim as US pools will be clean.
AND!!!! I've got travel insurance!!!!! From eurotunnel for USA onc said he'll wright on notes I'm fit to travel and not going for treatment as that's all they wanted to know for £71:00!!!! Mind he did say insurances as slippery eels when it comes to paying,so if I can possible not try it out!!!
Omg ,I'm sooooo happy.
Huge hugs to all the wonderful ladies on here,Helen xxxxxxxxx
rosie53
Member

Re: Bone mets - please join in

Hi Nicky, just read your post, thanks for that as i also got confused by it all and that has helped me understand it a bit better.
Love Janette x
nicky08
Community Champion

Re: Bone mets - please join in

Hi Carol
Breast cancer can have different receptors, which is what enables the cancer to grow. The biopsy that you would have had when first diagnosed will have confirmed whether you have none, one, two to three receptor types. The receptors are either HER+ ie you have an over expression of the HER receptor and therefore Herceptin, or newer similar treatments, are given to block the receptors and stop the cancer from growing. Or you can be hormone positive with either/or progesterone and oestrogen receptors and therefore you are given hormone treatment to block these and stop the cancer from growing. If you have no receptors your cancer is referred to as triple negative. However you can have all 3 receptors and this would be triple positive. It sounds like the treatment you are on is appropriate for your type of breast cancer that is why no other treatments such as Herceptin has been added as it would not benefit you. Occasionally receptor status can change, as mine has done so, whereas I was HER- and PR and ER+ I am now triple positive so Herceptin has been added to my treatment plan. I hope this helps but please ask anything else, it's all very confusing and often PR (progesterone) isn't even mentioned when they talk about being hormone positive!
Nicky x

carolsav
Member

Re: Bone mets - please join in

Hi everyone. Sorry to ask something i feel i should know but....wot is her positive? My original cancer from 10years ago was oestrogen based. Is that relevant? Iam prwsently on letrozole ans denosumab injections plus the usual pain relief...mst and paracetamol. I dont know why chemo hasnt been mentioned this time rouns though. Am waiting for first scan since june to see if treatmenr working.
I dont post often but read this every day and your messages really help me get my head round things!
Carol x
belinda
Member

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Hope you are about to have the most wonderful time Helen. 🙂 x
Lynnq
Member

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Oh that's good Bev, funny how we can accept pain and discomfort when they tell us that it is 'only' muscular. One if the ladies at my SBC group was relieved when they told her she had arthritis!!!!!!

Good news about the tumour markers as well.

Off to see the ONC today..been feeling a but under the weather lately, but I have been very busy and not a good sleeper so maybe over tired. But how do you explain 'under the weather'. Don't want to appear a winger....

HELEN - hope you see this before you go.....is it tomorrow......have a brilliant time.....love to Mickey!

Love to everyone else...none of you know how much reassurance you provide.....even to people like me who don't post very often
Bevlaar
Member

Re: Bone mets - please join in

Thanks Helen and lynn. Was examined today and onc is sure the pain is muscular. Its just below breast and around pectoral muscle although this is difficult to feel because of my implant.
Its not as far down as my liver and they're not worried about progression as my scan was only 3 weeks ago and nothing showed up then.
It feels like a stitch and this is a common for intercostal muscle pain. My TM has come down from 96 last time to 83.
Has given me ibuprofen and cocodamol to see if that eases it.
Tracey hope you'll be feeling better soon..youve had it rough lately.
Chocolates. ...so much for your duvet day! Dont overdo it 😉
Love to everyone ...bev xxxx
Chocolates
Member

Re: Bone mets - please join in

Hi ladies, hope you are all doing as well as you can.

Mavis was good to hear from you but so sorry you are still having such a difficult time. I really hope your onc can get you sorted soon, the trots again is no joke. Really feel for you. I hope you begin to feel a little stronger soon.

Sheila - shout out to you. How are you. When you can please let us know you are ok. Thinking of you.xx

Desi - sorry to hear you are still u dear the weather. This is awful - I hope you too start to feel stronger soon. It's so difficult isn't it - thinking of you too.

Hi Janette - lovely to see you back. Hope you're getting on ok after your holiday. Miss difficult at first when you get back to normality isn't it - what a scare you gave everyone too. Hope you are now fully recovered.

Helen, I presume those cases are packed already. Hope the sores have now really started to heal. That swimming pool is waiting for you girl.

Hi to everyone else - my day off today - was meant to be a duvet day but have done the washing, ironing, cleaning and cooked a few meals. Rest will come I'm sure but I am feeling a lot better now.

Huge hugs everyone xxxx
Lynnq
Member

Re: Bone mets - please join in

Hello Desi-2. Just to let you know that I also have skull mets and I hardly ever notice them apart from the couple of days after my Zometa infusion.....and it did settle after the first couple of infusions. I tell myself that it is the zometa giving the cancer a good kicking......

Lynnq
Member

Re: Bone mets - please join in

Hello Bev...I do not - as far as I know -  have lung mets, but I do have symptoms very similar to yours.  I am seeing the oncologist tomorrow for my 3/4 monthly check.

 

 Since i was diagnosed 2 years ago (with primary and then 6 weeks later with secondaries) I have had good results with LETROZOLE and ZOMETA.  I have had a fall in my TMs every time I have had them measured....that is 6 consequtive times over the last two years.  My pain has been managed with ibuprofin and paracetamol.  I am not complaining but because of this I have not had a scan for 11 months tho I was told initially that they would be done every 6 months.  They just say -"good TMs falling see you in 3 or 4 months"-  so when I go tomorrow I am going to try to insist on a scan.  I have pain in hip which is worsening and may need more than the regular painkillers now.

 

But to answer Bev's question I do have similar symptoms.....however i also suffer from reflux and have a small hiatus hernia so I am thinking that may be causing the pain/discomfort in the same place as you....it has in the past. Have you ever thought about reflux?

 

I also have to admit that since the treatment started I have put on an awful lot of weight around my middle and when I was first diagnosed wih reflux the consultant told me that excess weight can cause the oesophegus to be pushed up also causing the discomfort.  When I touch the area you mention it does feel sore.........I will let you know what the ONC says tomorrow.  

 

My mets are in - upper spine, boney area and top few ribs....but my last scan (11 months ago) showed no progression and some resolution. Also in the mets in my pelvis as well.......

2catlady
Member

Re: Bone mets - please join in

Ethel it's the "what's happening on met day" tread.
Hugs to you Tracy xxx keep strong.
Bev,I don't have any pain with my lung mets. I've developed a slight cough in mornings but that's all. Pain in lower ribs but that's either rib mets or liver met?!
Hugs ladies xxxxxx
Ethel_horner
Member

Re: Bone mets - please join in

Hi jeanette what's the metastatic day thread? Ethel x
rosie53
Member

Re: Bone mets - please join in

Morning ladies, hope everyone is ok
Just been on the metastatic day thread it is getting very active and rightly so!!
Mavis sending you a big hug sounds like your having a real struggle at the minute
Love and hugs to all Janette x x
Desi-2
Member

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Sorry Bev this doesn't sound familiar to me xxxx
Desi-2
Member

Re: Bone mets - please join in

Morning Ladies Mavis it's lovely to see your post so sorry it's been such a struggle with treatment hope things pick up for you xxxx

Feeling rough a again today unfortunately I'm sure it's these jabs that are causing it but I guess they must be necessary. Skull mets are particularly painful at the moment, was only mildly aware of them before treatment started. Jabs can cause bone pain but maybe the start of Zometa aswell hope they settle soon.
Love to all xxxx
Bevlaar
Member

Re: Bone mets - please join in

Has anyone with lung mets had pain in chest like a stitch at top of diaphragm and ribcage in the area where the mass is ....I've had this constantly since sunday when i breathe.
Love bev xxx
2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies,
Hi,Mavis ,great to hear from you,so sorry you are having problems your poor body has taken a bashing. I can't believe you have the trots again. Stay strong ,huge hugs,Helen xxxxx

Chocolate,how are you today. I hope you rested yesterday and had a duvet day yesterday xxxxxxxx

Tracy,how's it going? Hope your feeling okay xxxxxxx

Bev,I hope you don't have as many problems with this cycle and glad leg is sorted xxxxxx

Madge,yikes !but just think the sooner the better for kicking Cs butt. Stay strong and you know we are all here for support and hugs xxxxxx
Hello to the new ladies xxxxx
I'll catch up later,huge hugs and stay strong,Helen xxxxxxxxxxx
Ethel_horner
Member

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Hello Mavis, the girls on here have been posting your absence on the forum they will be **bleep** a hoop to see your post. I send kind thoughts and hugs from your sbc sister. Ethel x
sivam
Member

Re: Bone mets - please join in

Hello my dear supportive friends, havent posted for a while because quite literally I have been knocking on Heavens Door but They wouldnt let me in, told me to put up a fight.Started 2nd chemo Everolimus 10mg and Aromasin and lo and behold the dreaded "trots" again, which left me seriously dehydrated and also in need of a blood transfusion.Onc decided to rest me and future treatment to be at 5mg, still quite poorly and dizzy and tomorrow feel my treatment maybe rested again, so everything crossed for good blood results, so I can fight those "litle huggers" Love and Light xxMavis

madge1
Member

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Hi lovely ladies, thank you all for your posts and support!!! Going to have all chemo next Tuesday as they phoned me today!!! Yikes !!! My biopsy was from a lymph node under my arm as I had complained that my underarm had become more swollen and tender, this one was higher up!!! The others had begun to shrink on the capecitabine!!!! You just have to be positive and go with the flow !!!!
Nicky08' I think we will be on the same treatment, will have to support each other!!!! Have ordered my bandanas etc. tonight from Anna bandana !!!!! Wishing everyone good luck on their treatments!!!
Love Julie
Xxx
Bevlaar
Member

Re: Bone mets - please join in

Sorry to hear about the progression madge1. It must have been a heck of a shock. We just plod along thinking we're stable then this jumps up. ...its so unfair. But keeping one jump ahead is the key and im sure your onc is on top of it.
Law36...glad to hear the ladies on here have helped you and your mum.
Starting my next cycle of cape tomorrow. Good luck to all the other ladies here! xxx
bertie1
Member

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Good morning madge1 sorry to hear of your progression but keep strong and positve and I'm sure you will get through it ,you will get plenty of support on here.I thought I had beaten this disease as I went 12 years and then had recurrence 3years ago and now have secondaries in bones ,chest lymph nodes and liver and have been put back on Capecitibine and denosumab.i too have been medically retired think on the positve side and do all the things you enjoy doing.
Love Kaye xx
2catlady
Member

Re: Bone mets - please join in

Hi,laws,yes,markers coming down sounds like good news to me. Give your mum a hug from all of us.
Huge hugs to you and your mum,Helen xxxxx
Ethel_horner
Member

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No iPad no access! When will it be done??? Give us a date because we don't have time to waste. Ethel x
Law36
Member

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Hi my mum has just had her results of her first set of tumour markers ( well first ones we asked for ) and they have started coming down 😉 this is surely good news isn't it ? Specialist said as has no results from ct when we got there if there was any progression he would call us the following week to go in ...... No phone cAll and that was last week ! I really hope this is a positive turn for my mum and am feeling like I can breathe abit now as it has just been bad news after bad news since feb .. I read all of your posts to keep me informed so I can pass on to my mum ( inc pip ect and bone strengthers) I would like to say a HUGE Thankyou to everyone as I have learnt so much on here and it has really helped me understand and I wish u all well xxxx
2catlady
Member

Re: Bone mets - please join in

Hi,Tracy,sorry your feeling rough. Sending you a massive hug,Helen xxxx

JoBCC,I'd love to join chat but only use iPad . Please give the" IT crowd " a kick to get this sorted soon as it seams to have been getting upgraded for a year with no luck.
Desi-2
Member

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Would certainly join in once iPad friendly.
Desi-2
Member

Re: Bone mets - please join in

Morning Julie sorry to read of your progression but hopefully the herceptin will keep you stable after chemo for many years. Hope you don't mind my asking was it a liver biopsy that showed changed in status?

Feeling rough this morning think it must be connected to the Gcsf jab yesterday hope it wears off 😕

Xxx
Jo_BCC
Member

Re: Bone mets - please join in

Good morning all,

 

Hope you don't mind me jumping in on your thread - but we are trying to promote our Live Chat services to those of you who don't know about it or haven't tried it.

 

We have two sessions of Live Chat each week, Tuesday night 8.30pm - 9.30pm which is dedicated to those of you with a secondary diagnosis so you can talk openly about any concerns/issues you may have without anyone who only has a primary diagnosis being present.  The session is hosted by a nurse who is there to help answer any questions your may have and a moderator is at hand for the technical side.

 

The second weekly session is Thursdays and is a general session, open to all.  Again this runs for an hour between 8.30pm and 9.30pm.

 

 Unfortunately until our system is upgraded (hopefully soon) Live Chat has to be accessed using a laptop/desktop, it doesn't work for ipads/tablets/phones.  We would love to see more of you on Live Chat, so please give it a go - the support from the regular users is wonderful.  I have put the link below so you can have a look.

 

http://www.breastcancercare.org.uk/community/chat

 

Thank you and take care everyone.

 

Jo, Moderator

nicky08
Community Champion

Re: Bone mets - please join in

Hi Julie
What a shock - the same as I had last year when my liver mets were diagnosed, after 5 years of 'only' bone mets. My biopsy also showed a change from HER- to HER+ but I couldn't have the treatment I needed until this year when my heart problems were sorted. However I have just had my second cycle of docetaxol, Herceptin and Perjeta so it sounds like we will be on the same path and hopefully can compare notes or at least share info. Hair will definitely come out so a bit if a shame if you have just spent some money on a haircut! I knew I would be starting this combo for a number of weeks so my hair just got messier and messier as I didn't want to spend money on it! Good luck and I bet the two weeks in France will really help now you have to go onto a more aggressive treatment, I managed to put mine off until after the main part of the summer and ticked off a few treats and trips I wanted to do which has helped hugely with approaching this positively. Good luck.
Nicky x