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Bone mets - please join in

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Re: Bone mets - please join in

Hi Rosie,

 

''see how well you managed her!.. yes it's very unheard of for that to happen......maybe she has had her own troubles (been wrapped up in them)and your feedback gave her just the kick in the *R** she needed 

 

I think you might find she is very different now.....hopefully. I realise you probably feel a bit awkward in seeing her after your 'frank feedback' but it could be a good idea to give her one more chance before changing.....I know doctors can be missing the rapport gene....but you could change and then find your new onc is worse in some other way......just a thought.

 

i know the Christie is excellent and loads of oncs, but In your place, as you say, I'd give her another chance...it is really very hard changing and a lot of internal stress - I have a feeling she may now turn out to be very responsive.....they worry about getting complained about .

 

best of luck

Mx

 

 

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Hi Juma, I am interested to read your post because I was told I had a spread to the lung following a ct scan. I was in a lot of pain in my hips, shoulder, could barely move my arm. So I got an opinion from a different hospital who looked at the same scan and said no lung spread but extensive bone mets. I got a gp to refer me to that hospital where I have had a lot of radiotherapy to save my spinal cord. I don't want to mention the names of the hospitals just to answer your question-for me it was the best move I have ever made.

ramade xx

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Hi all, I relatively new here with initial diagnosis of stage 4. I was wondering whether somebody could share their experiences of gaining a second opinion? Not for diagnosis but rather treatment. My PET scan results showed extensive bone Mets which didn't show on the CT scan. I have met with my oncologist who has prescribed capecitabine. I don't doubt that it is an effective treatment but given my circumstances I'm not keen just getting one opinion. Has anybody found it an easy / difficult process or have any advice? Thanks J
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Hi Moijan, guess who I had a phone call from this afternoon.....my oncologist!! I nearly dropped through the floor, she rang to say that she has requested a bone scan as well as my routine CT, she said nothing to worry about it’s that it’s been a while since I had one. My oncologist NEVER rings me! Maybe having words with her last week has made her sit up bit. I remember about 18 months ago having to really pressure her for a bone scan as I hadn’t had one in a while and was getting a lot of hip pain, she said they are not routinely done anymore because of the nuclear medicine is quite high.
I’m under The Christie Hospital so there are lots of other oncologists I could change to, I’m going to have a chat with my GP about it and/or see how things are in February at my next appt with her!
Hugs Janette xxx
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Re: Bone mets - please join in

Oh and Rosie,

 

try setting out all your questions on paper or your iPad, you can then hand it over. I'd also take a advocate with me...a hubby, friend etc to note down replies,xx

 

 

M

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You know what Rosie, well done!  I changed my surgeon because his bedside manner was appalling.

 

i found it a relief, but also a bit stressful because I wondered if the next guy would then worry that I would complain about him! However, the surgery bit passes quickly and now I'm under a lovely onc and I guess they know too about the change, but it's about 16 years ago.... so I may have lived it down!  

 

As you have tackled your doctor, you might find she is completely different next time...you could go along and just see...are there loads of hospitals near you? I mean maybe do a bit of research first before acting.

 

in the south we have quite a few options, but I still asked a senior nurse friend who worked in the field and she recommended my new surgeon as she had heard from quite a few ladies, just how very nice he was....and he was too. Sadly he died a few years after that.

 

best of luck with it xx

Moijan

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Hiya Jeanette
I blame myself for being dismissed from. Oncologist appointments as I'm so scared I just want to escape but I must man up a bit this time and ask things. ...
It's about time we secondary ladies were given more priority and not written off ....everything is pink fluffy and tickity boo with the media. .
Glad u had a good trip ...lovely a wedding to focus on and a new outfit /hat !! then maybe a honeymoon baby for them! !
Hugs xxx
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Hi ladies, hope you’re all doing ok.
FF, Corsodyl mouth wash (chlorhexadine gluconate) is very good for mouth ulcers, I have always suffered with them and I know how painful they are!! Hey I get my next in February too and results day on the 15th so we will have scanxiety together!!
Has anyone ever asked to be changed oncologists?? I haven’t been happy with mine for some time now, I find her quite dismissive and feel like she just wants me in and out when I see her for results, there have been a few times when I have had worries/questions for her and I feel like she is just not interested, I actually “manned up” last week at my appt and told her this and she was gobsmacked as I usually just sit there quietly, I’m just sooo fed up with us secondary ladies being brushed aside!!
Anyway on a brighter note I had the best 50th birthday, Amsterdam was a blast! I got totally spoilt by my family and friends and the best news came from my daughter and her boyfriend, the have set a date for their wedding 12th Oct 2019!! I’m just so happy and excited for them......wish it would hurry up so they can get on with giving me a grandchild 😀
Hugs Janette xxx
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 And you ff, hope you're improving.my mum does armchair aerobics at her home, maybe your people could try that, not too taxing on the back.

hugs

ramade xx

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Sorry you are in pain Ramade!

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Thanks Bousy good to hear that, mine was in 10 vertebrae so I shall try to stop feeling so anxious for 2 weeks at least. Thanks for replying. Hugs

ramade xx

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Hi Ramade, 

I had rads to L2 of spine last Christmas and was told 8 weeks for pain to go and it was 8 weeks exactly. Hasn’t recurred since. Good luck , Hope pain goes.

Liz

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Hi there, has anyone had radiotherapy to thoracic spine, I finished this treatment 6 weeks ago and am in more pain now than I was just after. Am on painkillers but getting very anxious that itshould be better by now.

Thanks

ramade

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Hello, ff, I am glad to hear you haven't got compression fractures, but it still leaves the mystery of what is causing your pain. I do hope your pain is sorted out soon and proves to be nothing sinister.

 

Hugs. Barton.x

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Carolyn, I'm still going to work. I missed 2 days when it was real bad and last Friday when the ulcers were bad. Not sure if they were from meds or a virus. I'm just careful what I'm doing at work. I have limited the active activities. No balloon volleyball, parachute or waving ribbons and ties. Lol as simple as these sound in involves a lot of twisting and me bending to pick up a ball every few seconds. I'm going to start putting them back in the program, but for less time. I need to build myself back up, but not til I get my MRI. FF

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FF....I need a broomstick. .you must be psychic as I was just going to pm you to see how your back is doing.
Assuming that you are not able to go to work at the moment either ..Shame as you had only just started it recently but health before wealth !!
Hope it all settles down ...blame it on old age maybe !!

Hugs xx
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Thanks Silrata and Barton, I have improved over the last few days. I have kept moving but being careful what I do. No stretching or twisting! X-Ray showed no fracture. CT said no changes but was compared to the x-ray. Should have been compared to previous CT! Having an MRI on the 28th. Possible bone scan after that. I feel it could even be a small change that might have out pressure back there. Before I got real bad off and on I had burning feeling there sometimes.

 

I know not everything shows up on scans.When I first started with mets I had a ton of post nasal drip, coughing from it, and this weird sneeze. If I was active I would clog up so much I would get sick. The sneeze I had would start as a tickle in my throat and I would sneeze out my mouth not my nose. I'm not exaggerating! I could sneeze  a 100  times a day. Onc told me he didn't know what was going on but that the lung mets couldn't cause this. I read on-line that lung mets can cause post nasal drip. I went through this for 7 years until they decided I needed radiation bc a tumor had almost closed off my bronchus. After about a week if radiation to my bronchus the lis t nasal drip and sneeze were gone! It's been 5 years! My onc said the radiation couldn't have fixed it. Radiologist said she doesn't know what it could have done but maybe it did. Lol! I know it did!! I don't know how either but how else did it get fixed!  So, I believe we are each unique and these drs. don't know everything.Test don't show everything either. FF

 

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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

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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 💐💐
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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
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Hiya Moijan
Just reading online that bananas act better if u eat them more with the black spots on them ( I usually bin them !!)
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Kate, yes, magnesium. I also sometimes eat a banana at bedtime...this has magnesium in and can help sleep.

 

Mx

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

 

 

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

 

M

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

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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"

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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

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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.

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

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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 .
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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

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

love and hugs

Ramade xx

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Thinking of you FF..
Xx🌹🌹
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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

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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