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Bone mets - please join in

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Rest and take care FF Bon xx

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Girls, I'm tired . Absolutely no energy.  I'm going to take a break from here for a few days. I have to figure out how to help myself. Feeling so weak for me. FF

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Ramade, No pins and needles or pains out to limbs. All in my spine.It is mostly when I lay down. It just starts shooting up my spine. It jolts, squeezes and doesn't stop until I get upright. The pain is crushing. If I move it then spasms more which makes it difficult to move. The pain happens even if I'm perfectly still. If you touch my back anywhere it will send shooting pain into the area of T-11. The child was m massaging my thigh and it sent pains shooting into the area. It is all weird.

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Ff, regarding your back pain, are you getting pins and needles in arms or legs or hips, or do you get pain that moves around in these areas? I ask because as you know I have cancer all down the spine and the pain was 'referring' to other areas like this. So, in other words any of this would mean cancer in the spinal nerves.

I am still recovering from my spinal radiotherapy, 5 weeks on and still pain 'referring'.

hope you are still able to enjoy your weekend though. Pregabalin is very good for nerve pain!

Love and hugs

ramade xx

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Capricorn 13, Thanks for the tip! I will look for that.

 

Wendy, Yes the stable was good for the lungs, but my big issue is why all this severe back pain. 

 

Srilata, Starting with MRI if that doesn't show anything then bone scan. I haven't asked the benefit of having both. FF

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Great idea Moijan,

and thanks so much for that, as if sons can not get i will try this as get so tounge tied when on my own.

not been on here much as so stressed at moment ,but hopefully will work through it ,i always read the posts .

Reneex

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... Hello everyone....so sorry that a lot of you feel unable to chat to onc...totally understand...it must be the onc's lack of rapport, tho you say that fear can play a part and I do agree..I missed out on full feedback last time as I was too scared to hear it!    .I feel very fortunate....with my onc, but not every doctor has those skills.
 
however, this is what I always try and do.... See if it appeals to you to try...
 
1/
i type all all my questions out on my iPad and then hand it over to the onc, who goes through it....(I mean, what else can he do? When I've done that!)
 
if my iPad is out of service I write the questions down and hand that over)
 
2/
I give a paper and pen to my advocate( other half, or a good friend and ask him/her to take notes on the answers and anything else I'm told.
 
Some people have taped the session on their phone so they can refer to it later...but I think a lot of doctors would find that threatening.
 
3/ you could ask the bcn/ a clinic nurse to be present ....quite acceptable...she will remember stuff for you
 
4/ you could write down 'I'm a bit too shell shocked to ask the questions I want to ask/ stuff in depth, please help me' at the top of the list
 
i hope that doesn't sound too 'clever clogs' , sorry apols if it. does.
 
 
i once had to use my friend as a mouthpiece as I had lost my voice and she spoke up for me. another time, I  came out convinced the tumour was 16 centimetres when it was only 16 millimetres and she had written it down and was able to reassure me!
 
love and hugs,
Moianxx
💚💚💚
 

 

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Me too. I thought it was just my ancient computer playing up. Been happening for a couple of days now.

Now I know it isn't just me, maybe there are others, and perhaps BCC can sort it? Thanks for highlighting this. x

Highlighted
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BCC

Is it just me being an IT incompetent or isn't this forum working properly. When I've been trying to look back at members' previous posts I've been taken right back to 2010

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Hi PMOL
I'm sorry it's all been piling on top of you and making you feel so low. Hope you get some good counselling. You know you can come on here whenever you like and we will know how you are feeling.

Hugs Bon xx

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Hello pmol
Sorry u r feeling down ..we have all been there and got the tee shirt some days but we are women ..we just rise above it and get on with whatever life throws at us !
Hugs xxx💗
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Hi girls! Same as Jellytot - haven’t been for a while and this week has been particularly hard emotionally. So much so I’ve gone to the gp who has sent me for counselling (Macmillan doesn’t have one where I am 😔) and said to check with my onc next week about antidepressants as I am soooo low... such a ride this year!!!
Big hug JT xxx❤️❤️❤️
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Hi Ladies

Carolyn congrats on your new additions. Lucky you x
Funnyface good news you are stable even if they are comparing apples to pears. My understanding is MRI and CT are the clearest but if they are not concerned don’t you be unless you think there is something wrong it is your body so you know when something feels odd. If this is the case can you not ask for something earlier than Feb as I am presuming US healthcare is different to UK where we have to wait.

Janette congrats on big birthday. Hope you enjoyed

Have a lovely weekend all.

My appt is Tuesday and have upper back pain now so could be something new or tablets not working again or it could just be old age! Let’s hope it’s the latter

Wendy x
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Hi Funnyface , when I was having chemo this time around I suffered awful with mouth ulcers . The only thing that helped me keep sane and not rip my toung on my teeth was’ Igloo’cream . I am not sure if you have it in states but you might have something similar ? Hope it helps , also mouth washes with anaesthetic and salty water . Хххххх
Capricorn 13
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Dear FF
Have you been asked to do both MRI and bone scan? Doesn't MRI also cover bones along with the rest of the organs? I feel so confused by these tests. It's good that you are stable andresponding to e combo . Happy weekend
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Oh ff ..my usual thing with help ..I'm as helpful as a fireman with a wooden leg really. .have u tried gargling with bicarbonate soda or salt ? If not probably a good whisky would help!! Maybe the stuff u rub on babies gums when they are teething might help too ..

Hope u feel better soon as u have a busy social weekend ahead ..

Hugs xxx
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Usually I can discuss things with oncologist. She has n ever been in a hurry. She will answer hubby too. I was just angry when she said the CT was compared to the xray from 4 weeks ago. I thought it should have been compared to previous CT. I would now have liked to ask more questions about my lungs but had been more concerned with my back at the time. Oh well, Feb isn't that far away. Thanks ladies.

 

Any suggestions for these ulcers in my mouth?

 

FF

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hi ramade,

just read your mail and i have never heard of hubby not being able to ask questions,i would try and find out if it is hospital policy .

i dont have my hubby any more but sons come with me and they do ask questions and get the answers,but when first diagnosed i was asked if i was happy for oncologist and b c n to answer sons questions,they still dont ask everything of course as always come out and remember something that they were going to ask ,also my Mcmillan nurse asked if she could share with sons ,do try and find out as two lots of ears are better than one .

all the best 

renee

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Hi ff, I'm glad to know you are staying on e/e which means it's working. I have alternate mri/cts because they told me when it's in your bones it is clearer with mri. So good you are having one.

I agree when seeing onc I come out with no clue as to what she has said, a comlete block. My husband comes and then I ask him what was said and he tells me afterwards. Only thing is he can't ask qu's in there because they just look at me and don't answer, disconcerting but it must be hospital policy.

love to all, try and have a relaxed weekend.

Carolyn, I'm feeling quite jealous about your babies!

Ramade xx

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Hello bon
I agree I don't seem to have much rapport with oncologist either. .it's my own fault though as I get so scared when I go in ..I just want to get out as soon as possible. .I think I need to grow up ...and ask for scan reports etc .

Hello babsy
Nice to hear from you and yes the babies are in safe hands ..5 weeks premature so hooked up to things so no cuddles yet ..but I think I would be a bit scared to risk holding them yet ...but they are cute !!

Hugs xxx
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How frustrating FF, we’ve all been been there. My oncologist has has she’s not going to bother doing any more. How on earth will she know when there’s No Evidence of Disease ha ha ha 🤶🎅🏻🎅🏻?

Happy birthday Jeanette🎉🎂🍾

Carolyn, it’s quite quite normal twins to be in put into incubators. You just need to be able to quish and quash them. Mummy and daddy are going to need quite a bit of help. Xx 

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Hi FF

I'm with you on back pain, it takes over your life (not mine at the moment thank goodness). I think an MRI will show more detail if there's any more detail to show (hope there isn't) so you can be more sure where you are . I usually come away from consultations feeling dissatisfied. I wish I could 'chat to my oncologist' as Moijan seems to be able to do. It's not a scenario I recognise. Should prepare better I suppose, my preparation usually consists of getting in a state.

Good wishes for your next scans.

Hugs Bon xx

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I'm just bummed we still don't have answers on my back. I like concrete answers, and a fix.

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Ff
Surely that's all good news ...and u can stay on the e and e regime a bit longer. .
It's scary but at least u got the results quickly ..I'm still waiting !!
Well ..if ulcers permit ....celebrate with some nice food xxxx
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Thank you Bon and Carolyn.Well they say I'm stable and get a scan in a Feb and appt on the 15th. There were a few changes in the lungs but they balanced each other out. 

They said they see nothing new with back. I wasn't pleased that they compared the CT to the Cray from a few weeks ago. I thought that they would compare it to my CT from August. Apples to apples. She told me the other day she would send me for a bone scan next. Today she gave me a script for an MRI. She said next we would do a bone scan. All I know is I hurt and we found nothing out! I have broke out in more ulcers since this morning. This girl is going to take a nap! Frustrated FF!!!!!

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Another lovely graphic Bon xx

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Hi Funnyface

hands.jpg xx Bon

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Dear Carolyn
Congratulations . Wonderful grandma of the lovely twins👶👶

Srilata
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Hi all

 

Had my first Kadcyla on Friday.  Had a dry mouth for a few days and fatigue for a day and a half, so not too bad, I just hope it’s working.  

 

Funnyface, good luck with scan results.  

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Headed out the door for scan results!! Over the last couple days I broke out with some nasty mouth ulcers. Thankful for magic mouth wash. The biggest one is along the side of my tongue. Hits my teeth every time I even try to talk. I feel like an old cow that needs taken out to pasture and shot!  On the other hand a lot of activity going on this weekend with friends. Can't wait to have some fun. Comedy night and dinner Friday night. Sat night basket bingo with my oldest son. The profit from it is being given to the non profit my son works for. He has to attend. Sunday out to breakfast for SIL's birthday. I will let you know results when I get home. FF

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Happy Birthday Jeanette! Hope it was full of fun surprises! FF

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Hello Jeanette

Happy birthday to you 🎶🎶🎶🎶🎶
Happy birthday to you 🎶🎶🎶🎶🎶

Have a lovely 50th birthday ..
Hugs xx🌹🌹🌹🌹
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Ahhh, carolyn........little teenies. They will be safe in incubators, but of course a little worry until they are a bit bigger. They'll be fine. There's two of them after  all. i imagine them holding hands! I'm so glad you are seeing them so soon. i saw little Anna that evening. On the phone my son firmly told me that 'by the way, we're not going PINK!!'. No stereotyping. Well, that's gone out the window. She has pink genes. A little princess. And you have one of each! i'm so envious.

 

Yes, still got hair, although it is brushing out a lot. I won't give it the chop until it looks bad. Then a buzz cut! For now nobody else would notice. Next treatment tomorrow, then sleeping for England again!

 

mo               xxxxxxxx

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Thanks mo ...I'm just glad they are now delivered but they are premature and in incubators but visiting them tomorrow.
Hope u keeping ok too ....and holding onto the hair !
Hugs xxx
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Congratulations Carolyn! More lovely babies 👶🏼 👶🏼💖💙 

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Carolyn.........what wonderful news!! Twins! As a little girl myself I had twin baby dolls and always wanted them myself. Definitely a drain on the £££ but who cares! When you meet them please give them a little squeeze from me. Babies are what's best in the world. What it's all about.

 

Your scan. I would say 'no news is good news' as you have heard nothing. But I think the 29th is a long time to wait. Everybody likes confirmation. But I have a good feeling.

 

Take care, and congratulations. Aren't you clever? Twins!

 

mo                     xxxxxxxx     (Some of those are for you-know-who.)

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Congratulations Carolyn. Wonderful news! xx 

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Congratulations Carolyn, 2 lovely new grandchildren to spoil :-)  Hoping that Mum and babies are doing well and you get to see them soon.

Nicky xx

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Lovely news Carolyn, so pleased for you. The little ones have the ability to take your mind off cancer when nothing else does.

ramade xx

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Hello lindy loo
Thanks ..no scan results yet ...not seeing oncologist to 29th November so maybe will have to wait to then ..I'm working on the theory if they were bad ..they would call me in before that but I honestly don't understand how things work !!

Xxxx
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Afternoon Carolyn

Congratulations on your new additions to the family

By the way have you had your scan results?

Linda
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hi carolyn .

i am not too bad as finished radio and have chem tablets two weeks out of three then herceptin once every three weeks ,i have to have a ct scan to see if chemo is working ,i dont think it is but hopefully i am wrong ,have not had appointment through yet for scan,i am just so so tired carolyn ,it can not be normal,though i do have a few good days .

just hoping for some good news .

love reneexxxxxxx

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Renee
Your grandson sounds wonderful taking on 2 small boys but with so many broken relationships these days it's very normal.
How are you feeling? Hope you are coping with all the treatments thrown at you recently ..
Hugs xxx
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oh carolyn ,

how lovely for you and plenty to keep you occupied,i have two grandsons 25 and 22 and two granddaughters age 25 and 22 ,none married as yet but the oldes grandson is looking at next year and his partener has two small boys 2 and 4 from a previous relationship,but they are wonderful little kids and love my grandson to bits ,the oldest one has just been with aaron and he said to me i dont have a daddy i have an aaron?,how do you answer that carolyn ,very difficult;

love reneexxxxx

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Hello Renee

Yes they will certainly drain the purse strings as they are grandchildren no 5 and 6 !! Already have 12 year old grandtwins !!

Xxx
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hi carolyn ,

i am delighted for you ,and hope mum and babies are all doing well ,now you will never have any spare cash believe me

take care and lots of hugs for everyone 

reneex

 

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Awww Carolyn this is amazing news!! Congratulations so pleased for you.
Hugs Janette xxx
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Perfect! Congrats Grandma! FF

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stock-vector-cute-cartoon-twin-babies-both-in-separate-layers-for-easy-editing-25612000.jpgMy Twin Grandchildren now hatched.A Girl And A Boy. ..soooo excited can't wait to visit them later. Xxx