62836members
330427posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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💗
Member

Re: Bone mets - please join in

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❤️❤️❤️
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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 

Member

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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
Community Champion

Re: Bone mets - please join in

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!!!!!

Community Champion

Re: Bone mets - please join in

Another lovely graphic Bon xx

Member

Re: Bone mets - please join in

Hi Funnyface

hands.jpg xx Bon

Member

Re: Bone mets - please join in

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

Srilata
Member

Re: Bone mets - please join in

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.  

Community Champion

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

Hello Jeanette

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

Have a lovely 50th birthday ..
Hugs xx🌹🌹🌹🌹
Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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
Community Champion

Re: Bone mets - please join in

Congratulations Carolyn! More lovely babies 👶🏼 👶🏼💖💙 

Member

Re: Bone mets - please join in

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.)

Member

Re: Bone mets - please join in

Congratulations Carolyn. Wonderful news! xx 

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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
Highlighted
Member

Re: Bone mets - please join in

Afternoon Carolyn

Congratulations on your new additions to the family

By the way have you had your scan results?

Linda
Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

 

Member

Re: Bone mets - please join in

Awww Carolyn this is amazing news!! Congratulations so pleased for you.
Hugs Janette xxx
Community Champion

Re: Bone mets - please join in

Perfect! Congrats Grandma! FF

Member

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

Bon, I have been using your lovely graphic ever since xx

Community Champion

Re: Bone mets - please join in

hi Lauren

 

yes, it does put you at risk if you add your email address.....also people won't want to email, in case you happened to not be who you appear to be...we get lots of people on here who try to find out who WE are and some who just want to use the forum to pressure sell, sadly.

 

my gut feeling is that you are a genuine user who really needs some advice and help, and I see some of use have responded....you can also ask the moderators to enable your private messaging then you can chat privately with anyone you choose.

 

so sorry to hear about mum....it's harder in some ways to be a helper/carer and have to watch than go through it ourselves. My guess is mums onc is being very thorough...try not to second guess/crystal ball as it just feels so much worse then. Also googling won't help either. Try and keep an open mind...they might just want a closer look at how mums cells are developing...to rule out stuff.

 

you can chat on the helpline above or ring Macmillan `they are excellent.

 

best of luck, much love and hugs, Moijan💚💚💚

Member

Re: Bone mets - please join in

Lauren, I’ve got cancer in my bone marrow(and about everywhere else ha ha) but the effect of it in the bone marrow is that your calcium levels are great,y altered (take Adcal with vit d for this) it also effects the blood cells being produced. I’m under an integrative oncology charity (www.canceroptions.com) which help with the right type of supplements. My main effect is haemoglobin levels which fall every seven weeks which which means I have two units of blood in that time period. I keep my white cells and platelet levels within the normal range (sometimes exceeding) with a supplement available from Amazon, Mico-Sol, Agarius  Blazei musherooms. There was a study in Spain and Italy which treated stage4 breast cancer patients with this. The results were remarkable and they have been with me. My oncologist wanted all of the details as she wanted to share. They are about 50-54£ a month. I started off with two and am now on 3 a day, following advice. There are always ways to move forward. Good luck, and loads of hugs and kisses B x

Member

Re: Bone mets - please join in

Lauren, I'm  not sure which hospital you're at but it won't hurt to keep phoning about your next appointment until you get one. Not sure why they're looking at bone marrow but you'll find out.write down your questions before you next go in. Try not to worry they will get her on treatment and then hopefully she will pick up. I have cancer in nearly every bone in my body but I expect to live for years(maybe I'm being overoptimistic) but there you go.i'm 60.it's good newsthat her other organs are free.being misdiagnosed is really annoying and would no doubt not help your mum to feel better.i was misdiagnosed for 4 years and lost a vocal cord to cancer because of that but it is important to keep looking forward. Stay on thissite because the people on here are lovely and will help you a lot.

Hugs

ramadexx

Member

Re: Bone mets - please join in

Hello Lauren

I replied to you on the other thread ..as much help really as a chocolate teapot !! But we are here to support you and your mum ..
Sending hugs to you both xxxx
Community Champion

Re: Bone mets - please join in

Hi Lauren

I've responded to your other post on the other thread, suggesting you remove your private email address for your own protectioin. I'm sure you will get a response from other ladies on either of those threads. xxxxxx

Member

Re: Bone mets - please join in

In June 2017 my mum had been feeling very unless for some time but couldn't pin point what was wrong with her she was also getting some back ache so she went to her GP which he told her it's muscular pain she went away thinking it would get better. But it started getting worse so in august she went back again and they said we will do some bloods and a x ray just to see if anything comes up anyway bloods come back high calcium and x ray on chest area come back full of small lytic lesions everywhere they could see so they referred her to the breast clinic because my mum had breast cancer previously 10 years before they did biopsys scans etc which showed she had breast cancer but this time it's in the over breast the one she had in before is clear.. she has these cancer spots all over her ribs collar bone shoulders spine and hips but no major organs as of yet! Calcium levels are making her very sick and week she's lost so much weight as she can't eat and on very strong pain meds she's in and out of hosp trying to get calcium levels down too! She is feeling very down and she can't stop thinking she hasn't got long left we haven't even seen a oncologist yet it's been 3 weeks since they finally referred her but heard nothing as of yet! She as been referred to someone else too to check her bloods for cancer now they also want to do bone marrow biopsy is this rountie? Or is there something they aren't telling us? How long did it take you all to see oncologist? And once you did how long until you started treatment and what treatment did they put you on? How long has it been since your diagnosis and how well are you all doing we want to speak to people in same situation life is so cruel to do this to people! My mum is moving in with me as she can't take care of herself anymore she struggles with the most littlest things now picking the kettle up with water in it hurts her. Is there a good possibility she is going to be here for some time or do we need to prepare ourselves for the worst if anyone can relate and wants to talk direct please email me email removed thanks for reading xx

Member

Re: Bone mets - please join in

Haha B that is sooo funny.....but true!!!
Hi ladies, hope everyone is doing ok, I don’t post that often these days but I do still read all the posts.
Take care ladies, hugs Janette xxx
Member

Re: Bone mets - please join in

Absolutely great,,,pleased there are more than me out there suffering from this.

take care .love reneex