Bone mets - please join in

[Barton]

Hello Srilata, I, too, have had several compression fractures!

FF, the pain was awful! Muscle spasms every time I moved and I couldn't lie down to sleep (I couldn't get up again if I laid down!). I slept sitting up for about 5months. After a hospital visit for not being able to get up off the GP's table (where I went for back pain), I was told it was just muscle pain and was not given an Xray. A visit to my Onc a couple of weeks later, and she offered an Xray, which showed compression fractures. Just sitting in a car was torture - especially going over any kind of road bump! So house-bound for several weeks. I was told to keep moving as much as possible, and I'm sure that has helped in the long run, although very painful in the short term.

Hugs, and best wishes. Barton.x

[Srilata03]

Dear FF,
I had similar shooting pain in my spine and couldn't lie down or get up from bed. Bone scan showed extensive spinal mets with vertebral compression. It was pressing a nerve. Did you have your bone scan ? I am sharing my experience if it is of any help. Compression or fracture may cause the pain.Rest as much as you can 💐💐❤

[Carolyn52]

Hello ladies

Well that's good news announced today that iBrance and kisquali is available in England for many ladies now ...I'm sure many will meet the criterIa for it here so it's another option if our existing treatments fail us ...
Fingers crossed there will be lots more options like these for future ladies ..maybe not in our lifetime but further ahead ..breast cancer will be like the measles and fizzle out so younger ladies don't have to endure all this .
Hugs xx

[Carolyn52]

Hiya Moijan
Just reading online that bananas act better if u eat them more with the black spots on them ( I usually bin them !!)

[Moijan]

Kate, yes, magnesium. I also sometimes eat a banana at bedtime...this has magnesium in and can help sleep.

Mx

[Moijan]

Yes, absolutely...but really....a gp?

I am surprised...maybe she's new?Love and hugsxx

M

[Benten]

Thank you so much for your reply Kirby.  Yes the dreaded head tilt. Amazing how such a simple thing can ruin your day. xx

[kirky_68]

Rant away Benten. I increasingly find myself avoidng meeting new people as my chemo for primary BC nearly 5 years ago now left me with massive bald patches and I can almost hear people itching to ask. When they don't ask I feel like it's there in the background all the time and when they do ask and I tell them I get the dreaded sympathetic head tilt. Aaaaaaaaaaaaargh. I so wish I didn't look like a cancer patient as a lot of the time I feel OK (if knackered) and I get a jolt when I realise people are looking at me with THAT look. Thank goodness after 2 years of secondaries my close friends and family have all got used to me and we have all got past it.

As Sartre said "hell is other people"

[Benten]

Good Evening Ladies.  It is now six months since my diagnosis.  I have really stuggled at times and have been to some very dark places. I know eveybody has been the same. In the past few weeks I have started to feel better. I can be plunged back into dispair by the slightest of things but can also have hours when I don't even think about cancer. I am working, enjoying my usual activities and trying to keep everything as normal as possible. Looking forward to the kids coming home for Christmas and the various nights out. Physically if I hadn't been told I had cancer I wouldn't know. Had a doctors appointment on Friday last week about a totally uncancer problem, It was my first GP appointment since diagnosis. Wish I had never gone. All she kept talking about was CANCER and how sorry she was. If she mentioned it once she said it a dozen times.  Felt like yelling' I'm not ----ing dead yet'. This has totally thrown me back into a bad place. I ended up reassuring her that I was okay. How do you deal with peoples reactions? Just grabbed my perscription and ran. Rant over. Sorry.

Benten

[Kate21]

I have always been led to believe that calcium and magnesium go together and that magnesium is very important for bone health, especially as we get older. I always suffered with severe headaches/migraines and it was only after seeing a herbalist, who could tell instantly my magnesium was low and it was severely low, and I started taking supplements that they improved. My mum had been taking me to our GP since I was 10 years old, I’d been sent for glasses (there was nothing wrong with my eyesight but gave me glasses to magnify things anyway, which made no difference at all), and many blood tests and said nothing was wrong with me. Not suggesting this for one moment for anyone else but I’m on Letrozole and don’t take Adcal, I take my own supplements which my Oncologist is aware of, and doesn’t have a problem with, as my bloods are always good, these include magnesium. Taken at night magnesium can also help you to sleep. Believe it or not I used to worry about taking supplements, then I kept reading how the same ones were beneficial when have cancer, I bit the bullet and then took them to show my Oncologist, she let me go through them all then asked me why I thought she had a problem with me taking them! One thing I was told was not to buy cheap ones as, a bit like brands of Letrozole, it’s the fillers they use which can be the problem.

[Carolyn52]

Yes I take adcal daily and have 6 weekly denosumab so was looking at magnesium as a pain killer really. ..

[ramade]

Hi Carolyn, you should be on the A-cal, calcium and vitamin D tablet as you're on letrozole as it thins the bones. This is aswell as the monthly denosumab. They forgot to give me the A-cals and after a year on letrozole I had developed severe osteoporosis. Grrrr!

hugs

ramade xx

[Carolyn52]

Have any of the bone mets ladies here taken Magnesium tablets to help with pain ? I'm a bit of a scary cat at taking things like this. I take vitamin c and cod liver oil daily but always nervous with new things in case they work against the letrozole .

[jazmia]

Just do as you feel f f and hopethe rest works for you ,but nothing like pain for getting you down 

sending my love 

reneexxxxxx

[ramade]

rest and let others get the care for you. Thinking of you, brave girl.

love and hugs

Ramade xx

[Carolyn52]

Thinking of you FF..
Xx🌹🌹

[bonariensis]

Rest and take care FF Bon xx

[funnyface]

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

[funnyface]

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.

[ramade]

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

[funnyface]

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

[jazmia]

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

[Moijan]

... 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
💚💚💚
 

[Optimissy64]

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

[bonariensis]

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

[bonariensis]

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

[Carolyn52]

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💗

[PMOL]

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❤️❤️❤️

[Hayeswen]

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

[Capricorn13]

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

[Srilata03]

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

[Carolyn52]

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

[funnyface]

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

[jazmia]

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

[ramade]

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

[Carolyn52]

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

[Babsy]

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 

[bonariensis]

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

[funnyface]

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

[Carolyn52]

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

[funnyface]

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!!!!!

[Moijan]

Another lovely graphic Bon xx

[bonariensis]

Hi Funnyface

 xx Bon

[Srilata03]

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

Srilata

[Alexde]

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.  

[funnyface]

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

[funnyface]

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

[Carolyn52]

Hello Jeanette

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

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

[redridinghood]

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