Bone mets - please join in (Part 1)

Yes Ff that would be fab?. Great idea about the handprints! Hope your appointment went OK nicky and you enjoy the christening carolyn

Hello ladies

Well all quiet here the weekend ā€¦ hope u all had a lovely time ā€¦phew itā€™s hot and sticky here in Devon today ā€¦so only popping in and out to the garden.

Had a nice day with the twins christening yesterday. .they were so good ā€¦couldnā€™t wait to get home and take the tights off ā€¦horrid things ā€¦only wear them on rare occasions ā€¦otherwise itā€™s jeans .

Carolyn, glad the christening went well, how lovely to be celebrating such a happy occasion. Iā€™m with you on the tights, canā€™t stand the things! My leg hair had grown back but the capecitabine seems to have slowed it down, I shaved three weeks ago and still have nice smooth legs, so Iā€™m going without tights! Now all I need is a suntanā€¦

On our way home now after a fab week in the camper van in Belgium. Back to reality and a new type of chemo, gemcarbo this time. Letā€™s see what that does to the hair!

Hello tatyana

Glad u had a nice camper holibob in Belgium ā€¦itā€™s one of my favourite places ā€¦we have been several times but the last trip ten years ago ā€¦hubby had a heart attack scare and had to be rushed to hospital but all was fine in the end. Shame that sticks in my mind more than the lovely holiday we had.

Best of luck with the new chemo ā€¦hope u keep your hair with that one ā€¦itā€™s the loss of dignity isnā€™t it ?
:heart::heart::heart:

Hi Silverlining
I havenā€™t had a bone scan for over a year. Had onc appt last month, he said I would have a bone scan and head scan but when I looked on line the letter to my GP said I wouldnā€™t be having them till after my next appt in August. They hadnā€™t told me. Last year when my onc appt was postponed for 7 weeks I started getting all sorts of aches and pains so contacted him. He arranged a bone scan which was Ok and aches and pains miraculously disappeared.

I suppose I ought to say something but all my concerns are dismissed as negligible.

Maybe you should try doing what Funnyface says. It might produce some response and action.
Bon x

Hello all,

I havenā€™t had a bone scan for about three years and I have got ā€œmultiple bony metastasisā€ in ribs, spine, etc, etc.Ā  I donā€™t get any symptoms from them.Ā  I was having CT scans about every six months, but hadnā€™t had one since May 2017.Ā  The oncologist I saw round about February said they wouldnā€™t do scans unless I had new symptoms to report, but this stressed me out as I donā€™t get symptoms.Ā  Anyway, later he agreed I could have a scan this May, and today I got the results.Ā  I still have extensive bony mets, but they have been stable for around three years.Ā  So although the scan wasnā€™t strictly necessary for medical reasons, how do they know the cancer hasnā€™t progressed if they donā€™t scan.Ā  I donā€™t think itā€™s too much to ask to have a scan once a year.

Obviously Iā€™m delighted with the news that my treatment is keeping things in check.Ā  My first consultant when my secondary cancer was discovered, was full of doom and gloom and didnā€™t give me copies of letters to my GP as they were ā€œtechnical, and meant for medical peopleā€.Ā  Thank goodness since then I have had copies of scans and letters.Ā  They are our bodies and we should be able to know what is going on in them, whether we like what we discover, or not.Ā 

Best wishes to everyone,

Windflower

Ā 

Hi ladies,Ā 

Ā 

Im so glad I have joined this thread hope you all donā€™t mindā€¦Ā 

I had Chemo in Dec ,mastectomy Jan and radiotherapy 8 weeks ago which went quite smoothly considering.

But now I am really struggling with hip and back pain,started with the hip mainly on a evening turning over in bed I was in agony, then my lower back I was in pain with my back for a week the pain went and now itā€™s come back, I turned over in bed last night and I felt as though one of my bones had snapped, I struggle getting in and out of my car, getting up out of a chair, not able to stand up straight on a morning Ā it eases of through the day but any certain moment Iā€™m in agony, my work colleagues have noticed when Iā€™m walking Iā€™m putting my weight on my left side because of my hip. Iā€™m having a bone scan on Thursday, consultant thinks itā€™s muscular fingers crossed it isā€¦ Iā€™ve never had problems with my back or hip before this has really got me down,Ā I feel like Iā€™m being a nuisance and Hypochondriac and to top it all Iā€™ve started getting bad sharp pains side of my head itā€™s not a headache just sharp pains that goes into my pupil and ear it gets worse on a evening sometimes wakes me up. Could it be the Tamoxifen?Ā 

Ā 

The only pain I suffered with before all this was period pains and Iā€™ve not had one of them for over a yearā€¦Ā 

Ā 

Sorry for going on I was so strong and positive through all my treatment but because of theses bloody pains Iā€™ve dipped and feel so fed up!Ā 

Ā 

Ā Love to hear from you lovely ladies xĀ 

Hello Karen

So sorry to hear u are having so much pain so quickly after your treatment ā€¦having a bone scan will reassure you as pain always brings out fear of what could be happening .

I was fine after my chemo ( 2004) but I have read a lot of ladies do get nerve pain and aches from it for quite a long time .

You are wise to push for investigation though. .no one knows our bodies more than we do if something isnā€™t right. I had hip pain for a year ā€¦got dx with sciatica and arthritis and I put it down to old age but it wasent !

Please keep posting and let us know how things are going ā€¦we are real people here. .we understand worry and fear .

Xxc

Morning ladies, I donā€™t really post much on the forum these days but I do read them all.
Just wanted to add to the scan time periods. Iā€™m 4 years into my metastatic dx in hips, ribs and spine, fortunately been stable on letrozole, denosumab and zoladex, i get scanned every 3 months along with tumour makers and see my onc around 3 week later for results, I feel extremely grateful to be under the care of The Christie hospital, although around 6 months ago I did have to ā€œhave wordsā€ with my onc about her nonchalant attitude to some of my questions, as has already been said on here, oncs are not very good with the mental and emotional side of this disease!!!
At the end of the day we all no our own bodies and if something doesnā€™t feel right we should be able to act upon it!
Good luck to all waiting for results etcā€¦oh and Hi Nicky, always good to hear from you!
Hugs Janette xx

Morning ladies,

Ā 

Thank you all for replying and hope you are all well, I will let you all know onceĀ the scan result is back

Ā 

Enjoy your day.

Ā 

Ā 

Karen xx

Ā 

Hi Silverlining, no the Christie is both NHS and private, apparently people (private) come from all over the country, everyone is sooo nice and caring there from the consultants down to the reception staff!
The last one Zoladex is to put my body into menopause, i was 46 when dx with secondaries and Iā€™m ER positive so thatā€™s to shut down my ovaries, i donā€™t know how old you are but maybe you have already gone through the menopause??
Hugs Janette xx

Yes Silverlining I do have a great support network around me, husband is brilliant (if not a little too overprotective!) 2 grown up children and great family and friends, also I have a MacMillan nurse who is always at the other end of the phone.
I get what you are saying about driving through thick fog, it can feel like that, thatā€™s why this forum is amazing, sometimes we donā€™t want to burden our family and friends with our worries plus as much as they love us they cannot fully understand how we feel!
Take care, hugs Janette xx

Hi all,
I have just on

Hi All
On May the 14th was diagnosed with grade 2 cancer and then a double want to find it spread to my bones. Iā€™ve now stopped crying and trying to come to terms with this. I have yet to tell my children. For me this is the biggest challenge. I start Chemo on the 28th. Please let me know how you got on

Good morning

Well what a gorgeous morning to wake up to ā€¦sun streaming through house ā€¦couldnā€™t resist sitting in garden with my coffee watching the birds fight over the fatty balls hubby leaves out for them. Sometimes itā€™s good to be human and not forage for food like them ā€¦just open fridge door for goodies. ā€¦Oh no ā€¦one magpie ā€¦thatā€™s my day spoilt already !

Hope everyone is coping with treatments ā€¦none are easy with side effects but we have no choice.

Xxx???

Good morning everyone, hi Carolyn, yes itā€™s a perfect sunny day here too! Over the last few days Iā€™ve had such joy watching a baby woodpecker learning to eat nuts from our feeder, with one or other of his parents hovering around to keep an eye on him and grab a quick snack! We had the same thing last year, you see nothing of them for months, but as soon as itā€™s childrearing time theyā€™re so eager for the easy food!

Iā€™m a week into my new chemo, gemcarbo. So far so good! Had a little fainting episode but thatā€™s just me and my low blood pressure, not a side effect as such! Felt wiped out for a couple of days, but quite bouncy now. Iā€™ll need to be, as the granddaughter is coming for a brief visit tomorrow!

Morning ladies, itā€™s a little cloudy here this morning but itā€™s meant to be getting nicer as the day goes!
Just a quick question, went for my three monthly CT scan on Thursday and when I was called in i was told that I couldnā€™t have the contrast due my ā€œrenal impairmentā€ ??? I know nothing of this and was baffled, apparently something showed up on my bloods, still waiting for an explanation from my onc. Has anyone experienced this before??
Hope everyone is keeping well.
Nicky, also made a note to self to make more effort ?
Hugs Janette xx

Hi all not posted for a while but I read every day. Have now had my 4th lot of radio this time to pelvis and went straight back to work and then on mini break with hubby so all good. Get my results on Tuesday but pain back again and also in spine so expecting tablets not working again but 16 months on from diagnosis I live a normal life and work full time with 2 grown up children. So today sun shining and just been up west end to meet my old work girlies and nothing feels different so letā€™s enjoy ourselves and will be having a small glass when I get home to tell hubby about my normal day. Enjoy the weekend ?

Hayeswen, what a wonderful post, youā€™ve given me a cheerful start to the day! Good luck for your results on Tuesday and you keep living your life , girl! Looks like another lovely sunny day out there. Enjoy it, everyone.

Thank you enjoy the sunshine x

Hiya FF

Got sons dog for a few days and he has a worst bladder than me at night. .so here I am sat on patio waiting for him to empty out.
But. ā€¦there is a large hedgehog and 2 smaller ones drinking from the dogs bowl.
So cute.

Then looking out bedroom window ā€¦3 foxes strutting around. .not unusual if you live in country but we live in the heart of a city !

Well zzzzzzz need to sleep ā€¦nothing exciting in my life today but chiropodist doing my feet but itā€™s a treat to get a foot massage as well.

Ironing pile laughing at me too ā€¦