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Bone mets - please join in

dawnhc
Member

Re: Bone mets - please join in

Morning girls 🙂 just a quick reply for Fergal as non of the herceptin girls seem to have woken up yet! I'm at the Marsden and whilst on herceptin had my heart monitored regularly with a MUGA scan. Some hospitals do it this way and I always had an ECG first. Thhis was done in the same room as the MUGA scanner and just a sitting ECG before getting on the scanner bed. Sorry got to rush as it is my day at the hospice day centre.

Dawn
xx

LemonDrizzle
Member

Re: Bone mets - please join in

Good morning everyone
I'm another one who has been awake most of the night but I started to doze at about 6am which seems to be a regular pattern. It's so frustrating though.
A heart echo is definitely needed for Herceptin, I've never had an ECG and I've been having it for 9 months.
Just off to pick up my sick note and then to see district nurse.
Have a good day everyone.
LD x
2catlady
Member

Re: Bone mets - please join in

Great,Belinda xxxx oh you and David Cameron lol xxx I'll leave you to put tinsel on him lol xxx

Lynn,Oh,yes,dogs are very welcome to party as long as they don't eat all the twigglets lol
oh fantastic to TMs xxxxx

Fergal,I'm with Belinda I'm sure you need heart monitored for he Herceptin xx

Huge Christmassy hugs,Helen xxxxxxxx
belinda
Member

Re: Bone mets - please join in

Oh Lynn we could have met here, 3am, I had one of those nights too, no sleep and about to go shopping with my daughter..looking forward to a coffee break in between. Good news of your TM's.
Dogs, cats, hamsters, stick insects, all welcome. 🙂 x
Lynnq
Member

Re: Bone mets - please join in

Hi Fergal Don't know how old your mum is, but now that i am over 60 i had to have an ecg for monitoring purposes before I had recent ops....one of the ops was quite minor but they told me they always monitor over 60s for GA no matter how little. Maybe it is the same tor chemo???

Lynnq
Member

Re: Bone mets - please join in

Hello everyone, good morning...just wondering Belinda and Helen if dogs will be allowed at the Christmas 'party'. She'll be well behaved I promise.

Had one of those nights where I just couldN't sleep ..... Loads of shopping and going out for dinner tonight....hope I can manage a snooze later!
Had my zometa yesterday and my TMs have fallen by another 2 numbers. - hopong that's a good sign for my scan results.
Xxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi fergal jay
If she is HER+ your mum should have had an echocardiogram not an ECG to determine if her heart is able to cope with Herceptin. If she had an ECG this might have been just been to see how her heart is beating as it produces a trace of the heart beat rather than a detailed report of her heart function.
Nicky x

belinda
Member

Re: Bone mets - please join in

Helen, yes of course will flag up a thread a couple of days before Christmas Eve, good idea! X
Although David Cameron and tinsel bad idea. 🙂 x
Fergal I'm not her2+ but I think Herceptin can effect your heart so the monitoring will take place during various points throughout all of your Mum's treatment and she could be rested or have her dose altered if needs be. But one of the her2+ ladies will be able to advise better.x
fergal_jay
Member

Re: Bone mets - please join in

Hey all hope today's a good day for you all. Quick question as mums onc isn't always the most informative. She had to go for ecg yesterday her 1st chemo is due within the next week. Would you say ecg is a test for suitability for herceptin or probably just a monitoring thing?

Thanks
2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies,how are we all.

Belinda,if it's not cheeky would you be able to start a separate Christmas thread on Christmas Eve for our little Christmas get together as I know some ladies with other mets don't post on the bone mets thread. Then we can all raise a glass to each other and our lost friends for Christmas .hope you don't mind me interfering xxxxxx

Well we need a list of things for our party on Christmas Eve.
I'll bring DC only dressed with a bit of tinsel !! And some twigglets and prosecco ( oh I'm a classy girl lol)
Huge hugs,Helen xxxxxx
Macie40
Member

Re: Bone mets - please join in

Hi gillg78 I was DX with bone mets to sternum first then T4 and T 12 then recurrence to chests wall and finally lung mets a year ago.I do suffer with a lot of nerve pain in chest and arm due to radiotherapy and cyber knife treatment ,if any of you ladies can give me any advice on this I will be most grateful as sometimes it it keeps me awake most of the night hence this early post Love to all Macie x x 😌

Gillg78
Member

Re: Bone mets - please join in

Apologies that should say lung mets?
Gillg78
Member

Re: Bone mets - please join in

Maxine, excellent news. You say that you have had mets dx for 4 years. Can I cheekily ask how long you have been dx with liver mets?
Mowser
Member

Re: Bone mets - please join in

Count me in for the Christmas drink on Christmas Eve!!....

 

.. I will keep you posted with my news.... hoarse thoat?  Yes, it could be the low blood count,I suppose . The Vitamin B12 injection. I would recommend it to anyone and everyone!. It does no harm but I do believe it does good! I always feel as though my energy levels have been given a boost when I get it! Especially as I am starting the dreaded Peachy Devils tomorrow morning!!! (12th cycle). The reason I was given it inititally was when I was hypothroid diagnosed, they noticed that i was n ot absorbingVit B12 at all well ad my levels were really low. So have a three motnh injection-it always makes me feel better. If you can ask your doc for this I would. There are no downsides. only energy building upsides!!

 

Lots of love and Night night,

 

Mowser xxx

Macie40
Member

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Many thank to you all for your kind words I am over the moon right now and thinking perhaps I could make another Xmas. All you ladies are so brave and face your problems head on which gives me so much encouragement. Belinha I would like to have a drink with you all on Christmas eve so mine is a baileys too.
Love to all Macie x x x

Bevlaar
Member

Re: Bone mets - please join in

Evening ladies. ..what a wild night! Weather blowing up nicely. Macie I'm so pleased for you...great news. We all need to be uplifted at this time of year.

Belinda...yes a cyber get together on Xmas eve will be wonderful!
Especially as i have to go down to ward on xmas eve to get bloods done as my chemo is scheduled for Sat 28th!! Rotten timing eh?

As this is my first xmas with mets I've started to get a bit twitchy in the run up now...you know the usual worries about whether I'll be here next year?
But the news that my TMs have dropped after 1 cycle of docetaxel from 101 to 60 makes me feel a bit better.
I'll pour a lovely large glass of Baileys on xmas eve...its also hubbys birthday!!

Love to you all.....bev xxx
belinda
Member

Re: Bone mets - please join in

Lots of drinks to remember. 🙂
Macie that's great news!
Mowser you have made some good plans, the gym will certainly keep you busy.
bertie1
Member

Re: Bone mets - please join in

Hi all hope we're all doing ok.
Macie that's fantastic news what a lovely Xmas present ,hope I get good new after my scan at beginning of January.
Belinda that's a wonderful idea mines a Baileys.xxx
Hugs to all
Kaye xxx
bc-lass
Member

Re: Bone mets - please join in

I also notice mowser that you have hoarse throat. Same with me. Do you think related to low bloods?
bc-lass
Member

Re: Bone mets - please join in

Mowser i see you have had vit b inj. Has that helped with energy? My haemaglobin low given iron tabs but dr wants me to take vit b inj and folic acid tabs.
Lynnq
Member

Re: Bone mets - please join in

Great news Macie, have a fab Christmas with that news under your belt!!!


Also Belinda will share the sign in on Christmas Eve...that's the evening that our youngest son and his partner arrive to spend Christmas with us.....mine will be a nice glass of red......
Lynnq
Member

Re: Bone mets - please join in

Hi Mowser....good for you, hope that they agree to your CT and that the results for both of your scans are good. I have results on the 18th so like you hoping for the best
Sorry about the feet - hope they don't get any worse on your next cape.
Good idea to park your worries if you can..i have been told to try to put them in a box, keeping busy helps so good on you for joining a gym x
Desi-2
Member

Re: Bone mets - please join in

Macie that's great news thank you for sharing xxx
The effects of the rads do seem to be kicking in very tired today and still feeling sick. My clinic appiontment is not until 24th jan so that will be when I start Cape yikes. But must admit not sure I could cope with it right this minute. Some nice reflexology tmo at my local hospice so that should be nice and have made a choccy cake for their drop in day tmo too hope they like it.
Good luck to anyone awaiting results this week xxxx
rosie53
Member

Re: Bone mets - please join in

Thats fab news Macie!! Really pleased for you.
Hugs Janette x
LemonDrizzle
Member

Re: Bone mets - please join in

Macie, brilliant news which somehow seems even better at this time of year.
LD x
2catlady
Member

Re: Bone mets - please join in

Oh wow Macie,fantastic news xxxxxx you go girl . What a fantastic Christmas present xxxxxxxc
Huge hugs Helen xxxxxx

Belinda,that's a lovely idea xxxxx I'm a prosecco . Xxxxxxx
Huge Christmassy hugs,Helen xxxx
Macie40
Member

Re: Bone mets - please join in

Hi ladies I would just I've to share my good news with you have just returned from onco visit and results of scan is stable disease in lung ,bone and soft tissue mass in chest wall so I will settle for that. He also asked me if I would like an extra week off Capefor Xmas but I really didn't see any need for thatas I am just starting 11th cycle today so will be finished on 23rd just in time for Xmas anyway,and to be honest I am quite scared to upset the routine. I am going into my 8th year since primary and 4 years since Mets so I am feeling quite upbeat and intend to enjoy Xmas.ialso wish everyone going through this horrible journey a magical Christmas. I hope mowser has the news that she wants to hear on Tuesday and any body else that's waiting for results gets good news love to all Macie x x x x

rosie53
Member

Re: Bone mets - please join in

Count me in for that Belinda, mines a nice glass red wine and a cheeky mince pie 🙂
Hugs Janette x x
Mowser
Member

Re: Bone mets - please join in

Ok, so after another night of this constant pain in my lower abdomen and groin, the crackling in my chest (and hoarse throat) I have decided to stop concerning myself with how the onc and registrar will react, (i.e.thinking I am worrying over nothing) and have called hospital with my concerns and asked for a CT scan pre-Christmas to put my mind at rest, else it will spoil my enjoyment of a very special time of year...

 

Joined a gym yesterday, had my Vitamin B injection, had my blood results-low Red Blood and heameglobin count, but white cell and neutrophils look OK.

 

So good to go again with Cape Wednesday -my feet will think differently-they are still bright red, hot, itchy, peeling and with blistered manky big toes  😞  

 

MRI on my spine Friday so have asked if I can have scans  done on same day too, so that my onc. can see all results when I see him next Tuesday.

 

Trying to park my worries for the moment, kill the pain with pain relief and just take it one step at a time.

Keeping my fingers and toes crossed for good news next Tuesday-it would my best ever Christmas present....

 

Lovely ladies, I wish you a great week with all your Christmassy preparations. Mince pies, sherry, tinsel and baubles, xmas lights, mulled wine and coal fires...

 

Love and hugs,

 

Mowser xxx

 

 

 

 

 

 

lizH
Member

Re: Bone mets - please join in

Count me in :). Xx

LemonDrizzle
Member

Re: Bone mets - please join in

Belinda, what a lovely idea - mine's a Prosecco!
LD x
belinda
Member

Re: Bone mets - please join in

Go girls, shall we all try and sign in here, if we have the time, Christmas Eve sometime for an online Baileys (or whatever you prefer) and a mince pie?
(Drapes twinkly lights around the bone mets thread........)
jenny29
Member

Re: Bone mets - please join in

morning everyone

 

I too find xmas up and down nowadays. Last xmas was my 1st one with the mets diagnosis and I got very down.  The 1st time around was also around xmas time. And I can start feeling a bit sorry for myself for  having no family (even though I do have a partner and friends). The idea of having some excited dogs around actually sounds great to me 😉

 

But I'm still here, so going to try and focus on each day and not what might happen and what has gone. It's wet and miserable outside so it's time to put some fairy lights on and maybe I'll do some cake icing later. Oh and I have to stop putting off doing that paperwork.

 

take care all

LemonDrizzle
Member

Re: Bone mets - please join in

Good morning everyone
Fergal, I've had a couple of heart echos because of Herceptin and both times I was told by the lovely lady doing the test that everything was ok.
Janette, wouldn't like to be the little blighters with your attitude, think I need to 'do a Janette' now!!
LD x
2catlady
Member

Re: Bone mets - please join in

Janette,you go girl xxxxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hooray Janette, that's the attitude 😉
Nicky x
Ps I seem to be posting every time your are so end up missing your posts!

rosie53
Member

Re: Bone mets - please join in

Good morning ladies, its also a cold start here and the sky looks lovely, blue, orange ad yellow.
Right i have got a grip and decided this evil nasty disease will not spoil my christmas!!!! Its my first one since dx and this year has been a bad enough rollercoaster as it is....im kicking C's arse 🙂 im bigger and better than that bully!! (God that made me feel good saying that)
Stay strong girls, love Janette x x x x
nicky08
Community Champion

Re: Bone mets - please join in

Thank you Vercors and chocolates for our updates, it is so worrying when we don't hear from our friends on here. Hoping that they both are improving, even if gradually.
It is a very difficult time of the year for lots of people, let alone when you are faced with this diagnosis - which many of you have received since your Christmas last year. Like Belinda I have been living with mets for a number of years, nearly 7 in my case and I would say it does get easier to accept although the first Christmas, after diagnosis, always makes you think whether it is your last as it is probably the first significant family orientated event that you may have had as well as so much pressure being put on everyone to 'have a good Christmas' I hope you are all able to enjoy it for what it is, a time to spend with family and friends (and pets!) and celebrate that you are here to enjoy it. I have found over the past 7 ish years that I make sure I do enjoy special events and occasions, SBC definitely focuses the mind on what's important!
Thanks Belinda, I'm just about recovered now and ready for my final chemo (of 6), yay, hoping bloods don't delay it.
Take care lovely ladies Jack Frost has definitely paid a visit down south but was nice enough to paint the sky a beautiful pink for this morning 🙂
Nicky x
Ps just edited as I've seen fergal's question: You can ask what her LVEF value is, as that's the one they are looking at to see if her heart is strong enough to have Herceptin. The LVEF stands for left ventricle ejection fraction and should read 50% or above for Herceptin to be 'allowed' A report is usually written for the oncologist but if you ask the radiographer, or whatever their title is, they may tell you after the procedure is done. Btw it is probably an echocardiogram she is having not an ECG (although they will often do one of those as well if your mum hasn't had one recently) and is non intrusive and just like an ultrasound.

fergal_jay
Member

Re: Bone mets - please join in

Morning all, quick question mum has her ecg today's see if she's allowed Herceptin (Fingers crossed) has anyone had this and do you know if they give you results today or at next one appt? Thanks
2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies. Jack Frost has been very busy last night. All I can hear is people scraping cars this morning!

Vercors,thank you for the update on lulu. Please send her all our love xxxxxxx have a wonderful time with your girls xxxxxxx

Tracy how are you doing? Are you okay? Hope sickness has settled xxxxxxxx

Good luck with treatments and results everyone ,huge snuggly hugs,Helen xxxxxx
belinda
Member

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Great to hear news of Sheila and Lulu, thanks vercors and Chocs...xx
Mowser
Member

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Thanks Vercors,

 

Was great to meet you-yes my intention is to come to the next meeting-I did find it really helpful. Yes you did sound incredibly busy, you need a rest, you work so hard!

 

No doubt see you soon!

 

Mowser 

xx

 

   

vercors
Member

Re: Bone mets - please join in

Mowser,
Hoping things do settle, I was sitting next to you on Thursday in Oxford. I found that overview day run by BCC very useful. Come and join us for our monthly meet up, it is very a relaxed and supportive group.
I read all the posts religiously but don't find the time to post.
For those wondering about Lulu, from a photo that I saw on FB, I can tell you she was busy having fun lately.
I read with interest everyone's thought regarding Christmas. It can be such a stressful time for many. I am really looking forward to it. my girls will be back from Uni; and in our house, it is a very relaxed affair, with no politics or pretend. It is my family in my mother in law only. We really cherish that time, just the six of us. We have our little traditions. On boxing day, they are all off to a football match, and I can rest. Work has been bonker lately, I need this holiday. Xxxx

Chocolates
Member

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Evening ladies - quick sign in to say I've heard from Sheila - I've posted on the other thread. Made my day to hear that she is here and just about coping.

Huge hugs
Hxxx
belinda
Member

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Mowser I had all sorts of digestive symptoms on Cap, think it is a chemo that is especially prone to it, hard not to worry I know. X
belinda
Member

Re: Bone mets - please join in

Thank you ladies but honest I'm hopeless, 🙂 but yes we all muddle along as best we can, being able to be part of the group here does help me feel less isolated...and knowing we all have scary, lonely times, have been there, thought, cried, worried about the same things.
Hope all these doggies can get sorted for Christmas! X
LemonDrizzle
Member

Re: Bone mets - please join in

Janette, I've not been able to get excited about Christmas at all yet and would love to spend Christmas at home, but I know I'm going to have to put on a brave face and see family as usual. This is my first year since dx so I know exactly how you feel. Like you and Helen, we're going away after Christmas so that gives us something to focus on.
Lynn, dogs are part of the family and she'll be fine in the peace of the utility room with something to play with and a walk or two for toilet stops! You never know, but when hubby sees how good she is after saying the initial mad hellos he might change his mind.
Belinda, it's knowing that you're going strong after so long that gives me hope.
LD x
fergal_jay
Member

Re: Bone mets - please join in

Can I just say to all of you that your all an inspiration no matter how long you've been living with this vile disease I've been on this forum over a month after mums diagnosis nd you all give me hope and inspire me everyday to stay positive and realise that she will fight this and we need to stay united to help each other. Xmas is scary the fear mum won't be here next year kills me every time.I think of it but she says she has no intention of going anywhere lol

Don't feel down for having emotional lows just realise your highs carry a lot of us though each day

I'm at the start of this journey with mum and I try to seek out the long term stories as it gives me hope. Mum's only 54 and if she thinks bc is gonna beat her she has another thing comin lol I'm there for her and my dad no matter what!!

Please see how much u all help people like me xx
2catlady
Member

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Mowser,you can still have side effects after cycle. I only felt normal Wednesday and Thursday before starting next cycle on Friday. Try not to worry,but I know that's easier said than done.
Huge hugs,Helen xxxxxx
2catlady
Member

Re: Bone mets - please join in

Lynn,I agree with you about Belinda. Belinda you are our role model and a font of knowledge and experience and you help sooooo many people with your wise words.
Huge hugs,Helen xxxxx