68528members
360452posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Highlighted
Member

Re: Bone mets - please join in

Thanks Macie.

Flo

X

Highlighted
Member

Re: Bone mets - please join in

Hi Flori
I get to see the scan on the screen when I am with the oncologist at appointment but really don't take it all in so that is why I ask for a copy to study Love Macie x x x

Highlighted
Member

Re: Bone mets - please join in

Hello Macie 

 

Hope people don't mind me jumping in to this thread.

 

Is it just a written report that you get for your scans or do you get to see the scan pictures as well? I'd be very interested to see mine as I seem to have had a few tumours which apparently haven't shown up.  I had a PET scan which showed a sub pectoral tumour but the report didn't say the location of it, unlike when they tell you which quadrant a breast tumour is (although I'm pretty sure I know exactly where it is), and the skin mets didn't show on it.  My surgeon only had a copy of the written report for the PET.

 

I don't have bone mets or, currently, any evidence of secondaries, but have inoperable, incurable local-regional recurrence. After my recurrence I decided I needed to know more and so I got copies of my previous histology reports but I'd also like to see the scan results. Think I'll ask my BCN if she can get me copies.

 

Flo

X

Highlighted
Member

Re: Bone mets - please join in

Hi Tink
I always ask for a copy of my scan result because I always wondered if the oncologist gave me a full report,and sure enough they don't tell you everything.I have got copies of the the last 4 ct scans and was only told in April of lung mets but they were showing on the Dec scan.it also gives you time to thoroughly understand it and go ready with all your questions at next app. Best wishes to all cap ladies Love Macie x x x

Highlighted
Member

Re: Bone mets - please join in

Hi All,

 

Janette - everything crossed for you for tomorrow.  The waiting drives you mad doesn't it.

 

Mavis - OH can never do quite as much as we can can they? Hope your strength comes back soon.   It made me laugh about tidying up for the cleaning lady as that's what we used to do as children - it still looked a mess afterwards.

 

Dani - hope you have got peace of mind from your onc.  Chemo was very effective for me - lung mets 'barely discernible'.

 

Had a slight surprise today when I looked at my recent CT scan during onc appointment as it said 'multiple sclerotic metastases unchanged' in my spine (knew about) and also in my pelvis which I didn't know I had!  I wonder what else they haven't told me.

 

Chocolates and anyone I've missed.  I hope you are keeping well and enjoying the sun when it makes an appearance.  I bet Helen is having a great time - not raining in Disneyland I bet.

 

Tink x

Highlighted
Member

Re: Bone mets - please join in

Thanks Chocolates, its always a nervey time waiting for results isnt it and i'm sure it dosent get any easier with time!!!
Hello to everyone hope your all doing ok.
I wonder how our lovely friend Helen is getting on in Disney??? Hope shes having a wonderful time!!
Hugs Janette x x
Highlighted
Member

Re: Bone mets - please join in

Janette all the best for tomorrow - will be thinking of you.

Dani - a second opinion is good advice - would you consider it do you think. You've nothing to lose - you've already booked in your iv so Wong waste any time. It's just a thought though isn't it?
Mavis - it's lovely to hear from you - I'm so glad you are feeling a little stronger. Let's hope this time you can get back to a more normal in due course. Forget about the tidying. That's the least of your worries.

Faraway - how are you? How are things going? Hope you're ok also.

Sheila - sending you huge hugs. I hope you are feeling a little better - please not back in hospital - I'm worried about you. When you can let us know you're ok.

Huge hugs everyone.
Hxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi Dani, you do right to get a second opinion, i did that in Feb when i got my mets dx just for my own peace of mind.
Hope everything works out ok for you. I get my T/M results tomorrow and had my CT scan done last wk so also waiting for those results!!
Take care love and hugs Janette x x
Highlighted
Member

Re: Bone mets - please join in

HI Janette

 

TN = Triple negative.

 

Thanks for your info.  I've asked for a second opinion from another onc and hopefully I get more of the bed side manner that I would like.  The onc i'm seeing at the moment is fine but I don't feel I'm getting all the options out there.

 

We'll see what next Tuesday brings but in the meantime I see my original onc on monday to sign consent form for Eribulin. 

 

Love and light

Dani xx

Highlighted
Member

Re: Bone mets - please join in

Sorry have'nt posted for a while feeling yuk, but I am improving slowly slowly and the "trots have stopped Deo Gratias.I seem now too be coping with lower dose of Everolimus, fatigue is now my biggest problem!

I can see so many jobs building up in the house and no energy to tackle them, OH keeps on top of the kitchen, but the rest of the house needs attention.I would like to employ a cleaner but OH is dead set against having to tidy up before the cleaning lady comes!!I really hope that some of my old energy returns soon.

Love and Light xxMavis

Highlighted
Member

Re: Bone mets - please join in

Hi Dani, i'm on tamoxifen and zoladex and denosumab injections, had primary in 2007 and was dx with mets to spine, hip and ribs in Feb this year. Sorry i don't know what TN means?? I'm ER positive.
Glad you have decided on your treatment, hope things seem a little clearer for you today.
Love an hugs Janette x x
Highlighted
Member

Re: Bone mets - please join in

 
Highlighted
Member

Re: Bone mets - please join in

HI Janette

What treatment have you been on? I take it you're TN?

I'm doing well considering and have opted for IV chemo.

Love and light
Dani xxx

Highlighted
Member

Re: Bone mets - please join in

Dani - just sent you a pm xxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi Dani, aww i'm so sorry you having such a difficult time, I can't really offer you any advice as I don't really know anything about chemo...so far i'v been lucky enough to not have to it!!! I'm sure there will be some ladies on here who will be able to help you
stay strong sending you lots of love and hugs Janette x x x
Highlighted
Member

Re: Bone mets - please join in

Thanks Lucy

Highlighted
Member

Re: Bone mets - please join in

Hi Dani
I am sorry to read that you have such a lot of worry at the moment, our helpliners are on hand for you with further support so please feel free to call to talk things through. Lines open weekdays 9-5 and Sat 10-2 on 0808 800 6000

Take care
Lucy BCC

Highlighted
Member

Re: Bone mets - please join in

Hi there

 

I am back home and feeling overwhelmed with anxiety and concern regarding my onc appointment.  I spoke with her today before leaving hospital and she has advised that I should try Eribulin which is IV chemo.  Something I swore i would never go through again.  She said there is the option to go  back on oral chemo called Vinorelbine which has less toxicity but less effectiveness that studies have shown.  She said to hurry with the decision and not to wait longer than 2 weeks to decide.  She also pushed for me to try the IV chemo over the oral one as they have just received funding for this and she wanted me to try it.  I asked about trials etc. but nothing doing.  Hormone treatment alone is something she doesn't feel would help.

 

I feel bewildered by it all as never expected for the Cape to stop working after a few months.  Progression is now in sternum and sacroilliac.  I don't have any confidence in the chemotherapy option at all and wondered if anyone feels the same way?

 

I do have non conventional option to try but is not ready yet.

 

Love and light

Dani

Highlighted
Member

Re: Bone mets - please join in

Hi Dani, sorry to hear things have not been too good for you, stay strong!!!
Chocolates glad you had a good day and made even better by the call to say your car is ready....yey!! I'm still living in hope that i will get PIP
Good night ladies love Janette x x
Highlighted
Member

Re: Bone mets - please join in

Oh Dani - huge gentle hugs coming your way. I'm so sorry you've been so poorly. What a downer! I can't remmeber but did you have a break from Cape whilst you were away - do you think that has had an effect? Thank goodness you have an onc appt tomorrow. You must be worried and I'm worried for you. Now rest up - hope hospital not too bad and they are looking after you. I read your message you sent me when you got back but haven't replied yet. I'm so sorry. I'll send you a message tomorrow when hopefully you'll be back home with a new treatment plan. Fingers crossed for you Dani - please try and stay strong. xxx

Janette - what a dreadful week - let's hope this one is much better - I've never ever heard of blood from ear lobe - just doesn't bear thinking about. You poor thing. I'm grateful for my port - it always delivers, even for ct scans so is a life saver - I'm otherwise just like you Janette - hunt the vein every time before the port - usually ended up taking it from my foot. Very painful.

Lovely day here for us - we had a great meal out and topped off with phone call to say new car has arrived. Very exciting.

Take care lovely ladies - Dani - you're in my thoughts.

Huge hugs everyone and stay well this week.
Hxxx
Highlighted
Member

Re: Bone mets - please join in

Oh janette a horrendous week for you! I have trouble with veins too although probably not as bad as that.
You must be dreading each hospital visit,bless you 💖
You deserve the best birthday ever after that!
I made a nice lunch today too. Must be the cold weather starting. Lovely 3 bird roast and lots of veg and made a lovely bread n butter pudding for dessert. Also a sicilian lemon cheesecake courtesy of Lidl hehe!
Dani...so sorry you've been in hospital. It must be devastating to hear of progression. Lets hope they can start you on something better if the cape isnt working. I'll be keeping fingers crossed for you. 💖
Love bev xxxx
Highlighted
Member

Re: Bone mets - please join in

Hi ladies

Have been having problems with my phone as battery doesn't seen to want to charge so found it difficult to post from hospital.

Was admitted Wednesday 24th with return of pleural effusion even though I'd surgical pleuredeses to stop it coming back! The left lung was drained but then they found my right lung was filled with fluid too. I made the decision to stay in hospital and get that drained too. Whilst in hospital was told I needed ct scan which showed the effusion but also showed a thickening in pelvic bone. That prompted a bone scan which showed progression to sternum and sacroiliac. Not sure whether the Cape is working but I have onc appt tomorrow so will see what she has to say about it. I'm still in hospital but hope to be discharged tomorrow.

I can't get to my personal messages on my phone so Chocolates if you've tried messaging I will read when I return home.

Love and light
Dani

Highlighted
Member

Re: Bone mets - please join in

Thanks Lynn and Tink, its a few weeks to my birthday yet but my son lives half an hour away and with work etc i don't get to see him as often as i would like to so booked a day off work to spend some time with him
Well sunday din was yummy as was the apple pie i had afterwards made by my good friend "Aunt Bessie" : - ) going to go for a nice walk now to try and burn some of those calories off!!
hope your all ok and enjoying the sunshine
hugs Janette x x
Highlighted
Member

Re: Bone mets - please join in

Oh heck Janette how awful. I thought that they had trouble getting at my veins!!!... But it's easy peasy compared to that..i won't complain again (not that i do - only to my DH). Hope you're okay today and Happy Birthday..
Highlighted
Member

Re: Bone mets - please join in

Crickey Janette, what a nightmare!

 

I hope you have a lovely birthday - is it today?  If so, Happy Birthday!

 

You need a nice trip out and some retail therapy after all that lot.

 

Hope you're feeling better today.

 

Hope everyone is as well as possible.

 

Tink x

Highlighted
Member

Re: Bone mets - please join in

Ha ha chocolates - yet again you 'get me' it does tickle me (oopherectomy) x
Highlighted
Member

Re: Bone mets - please join in

Morning ladies, hope everyone is ok, not posted for a week or so, had a rotton week!!

We are have had our bedroom plastered last weekend so we moved into out daughters bedroom and she went in the spare box room, we have spent the last week getting it painted etc as well as going to work and as you can imagine my house has been in a tip.....which drives me mad.

On Wednesday morning i went to my docs to have my pre denusomab bloods done and as usual they struggled to get some, after 3 attempts they managed it, only then when i got home i had a call from them saying they didnt take enough grrrr so had to go back to give more.........thats not the end of the needles, had my CT scan later that day and guess what????? they could'nt get a vein AGAIN anyway they did manage it in the end by using my hand but it was sooo painful when the dye went through as the veins in your hand are thinner then in your arm.  Just when i thought my nightmare was over the following day I got a call from The Christie hospital to say my potassium level was too high and need to go to A&E asap for yet MORE bloods and an ECG oh i wanted to cry!!! gets to the hospital and yet another struggle getting blood and in the end they took it from my ear lobe!!!! never had that before, was sat up there for over 4hrs only to be told it was now fine and that they can get a false reading if they struggle to get blood.

Well it looks like a lovely day here in Manchester, going to get my washing on the line and cook a nice Sunday dinner mmmm and tomorrow my son is taking me into town for lunch and to buy me something nice for my birthday : - )

Hope you all have a lovely love and hugs Janette xxxxxxxxxxxxxxxxxxxxxxx

Highlighted
Member

Re: Bone mets - please join in

Hi all hope you're all doing okay.i had the flu jab yesterday and I feel a bit bunged up could be from that .Ill dose my self up before I start my next cycle of Cap.Another lovely day today a bit breezier but great for the washing.
Ethel I was on the aristacrat trial from May to August but unfortunately it didn't work for me,but you have nothing to lose as different treatments work for different people.My onc put me on it because I had progression on letrozole and her next step would have been exemestane so as she said nothing to lose by going on the trial and when you are on it you get monitored very closely and as she explained to me she would know after the twelve week scan whether it was working for me or not unfortunately it didn't but the scan picked up my mets and thn she put me on Cape chemo which I'm having good results on so far.
Take care all
Kaye xxx
Highlighted
Member

Re: Bone mets - please join in

Strictly is on - loving it. Lynn hope you're feeling better soon. Bevlaar lucky you re the weather. It's turned chilly here now. Ethel - don't you just love the word oopherectomy - although don't fancy the op!!

Stil very tired but will be a lot brighter tomorrow I'm sure. Daughter gone to party - did her make up before she left - son has walked her round.

Huge hugs everyone xxx
Highlighted
Member

Re: Bone mets - please join in

Hi girls off to see the Proff on Monday for extem.... Stuff! Following oopherectomy. He's going to start me on aristocat trial too but knowing my luck it'll be the placebo lol. My little smasher is home and I am resuming sitting watching the tv! Ethel x
Highlighted
Member

Re: Bone mets - please join in

Hi all. Had my flu injection today, been achey and a bit naseaus lately but think it may be the change in Letrozole brand. Having a blood test tomorrow for my ZOmeta on Tues so will get my TMs read.
Heavy rain here in Yorkshire this morning but quite bright now...feels chilly to me though. Have a big cardi on and central heating. OH is wearing tshirt....xx
Highlighted
Member

Re: Bone mets - please join in

Hi girls. Much the same here. Just putting feet up with a coffee. Hubby working and daughter and bf decorating their new house.
Nice and peaceful and a beautiful day! Sun out and blue sky but a bit breezy...ideal for the washing. And i have a lot of washing!!
Enjoy the weekend 💖💖
Bev xxx
Highlighted
Member

Re: Bone mets - please join in

Hi chocolates, I am home alone as my little smasher has gone to spend his money in town. I've been feeling a little nauseas over the last few days and was thinking all kinds of reasons why. I'm still none the wiser but last night I had shared a chinese and Eton mess with friends and I feel so much better. I think I haven't been eating enough again - what am I like? It's chucking down up here in the Midlands. My pain meds seem to be doing the trick so that coupled with no sickness means I feel spiffing! Enjoy your weekend. Much love ethel x
Highlighted
Member

Re: Bone mets - please join in

Afternoon Ladies, terrible weather here - oh saying was going to mow the lawn today - said this on purpose I think as he knew the weather wasn't good!!!!

Hi Janettte, Sheila, Bevlaar, Nicky, Mavis, Kaye, Lynn, Ruth, Julie, Desi, Ethel and anyone else I've missed off. We've been a bit quiet and I know Helen would be disappointed with us so I'm hoping everyone is ok and looking forward to a decent weekend.
Family celebration moved to tomorrow afternoon because daughter has a party to go to - honestly social lives of teenagers - were we like this when we were young?

Quiet day then for me today - treatment went well but tired today. So just doing the cooking, cleaning, washing and ironing. Oh just looking on as it's not his fault he can't mow the lawn!!!!

Have a good one ladies.

Huge hugs xxxx
Highlighted
Member

Re: Bone mets - please join in

Oh Ethel - yep I'm living the dream. At least the car passed its MOT. Hope you're ok - have a great weekend xxxx
Highlighted
Member

Re: Bone mets - please join in

Living the dream eh! Ethel x
Highlighted
Member

Re: Bone mets - please join in

Good luck with treatment this morning Chocolates. Enjoy the rest of the day and your meal tomorrow. Have a drink for me! Oh...and fingers crossed for your car. We rely on them so much. Im meeting a friend for a coffee and catch up later.
Have a lovely weekend. Bev xxxx
Highlighted
Member

Re: Bone mets - please join in

Morning lovely ladies - off for my treatment this morning. Slight distraction with getting the car MOT first - if it fails I'm stuck so fingers crossed. Another really busy week at work with another next week. Certainly can't moan about time passing slowly for me!

Hope you are all well and looking forward to the weekend. We're out on Saturday for a meal for a family celebration - really looking forward to it.

Right must dash - daughter to bus stop, mot, shower and hospital - then relax!!!

Huge hugs everyone.

Hxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi chocolates thanks for the well wishes an extra week off is lovely,need it though for my hands and feet and my onc prescribed me some cream today which she says is better than any I've been using.good luck with your treatment Friday .

Love
Kaye xxx
Highlighted
Member

Re: Bone mets - please join in

Kaye - that's fantastic news. Really pleased for you. Sorry about sore hands and feet - let's hope it clears up quickly so you can go back on treatment. Xx

Sheila - not in hospital again!!! You'll have your own bed soon!!! We'vw really missed you. I hope this time you stay well and your health steadily improves. What a performance. Sending you huge gentle hugs. Always thinking of you.

Ladies I'm missing our lovely Helen but am sure she's having an amazing time which keeps us all going. Busy week this week at work - 4 days on the trot(Mavis excuse the link to you - hope you're feeling a lot better too) so treatment Friday I think I'm just going to sleep.

Hope everyone is well - thinking of you all. Will write more when I've had a good sleep.

Huge hugs xxxx
Highlighted
Member

Re: Bone mets - please join in

Hi ladies hope your all doing ok on your treatment,I don't post on this thread often tend to post on the Capecitibine thread.I had my onc appt today and she postponed my third cycle for a week because of my sore hands and feet ,but actually came out of there with good news for a change as my markers had reduced from 190 to 84 after 2nd cycle of chemo so feel a bit more positve that things are going in the right direction
Kaye xx
Highlighted
Member

Re: Bone mets - please join in

Hi Sheila. I'm sure that you have been prescribed it because it seems to be standard but thought I would mention Adcal. Hope they sort it for you, good you feel okay but must be frustrating......
Highlighted
Member

Re: Bone mets - please join in

Hi nanofthree, I have had some zometa but I think only 2 doses at the most. My cal was 4-82 last week. It was down to 2-5 on Monday. Getting it checked tomorrow. Still feel OK. So will see! Just hoping they can control it so I can start back on treatment.. Good luck with your treatment too.😊

Chocolates, thanks for the push to get me back moving. Hope you are doing good. Have only read some of the posts so not caught up yet. I have a sore eye too so that doesn't help. OH woah is me. ! Must stop being a wimp.

Take care everyone. Hope I will soon be back to virtual normal.

Love Sheila xxx

 

Highlighted
Member

Re: Bone mets - please join in

Had to laugh Lynn about the builders. But it is horrible having some round your house all the time. My husband hasn't left their side all day. But one reminds me of Al Murray, the pub landlord, so I am sure he will tell him where to go when the time is right! Love ruth x
Highlighted
Member

Re: Bone mets - please join in

Hi Julie, Desi & Nicky.
I have wondered about the different brands of LETROZOLE. I will see what my Tumour markers are like next week and if they're stable I will make an appt to see GP. I had Femera initially, but over the last few months have been prescribed Accord & POM as well.

Ah yes Ruth - builders and their breaks.....we had a smashing group did some work for us a few years ago. They sent the youngest/apprentice to the pub to get their bacon sarnies each morning. I was usually at work, but being on a late shift one day I found out that they always got one for our dog as well........he adored them!!!!......both the builders and the sandwiches..
Highlighted
Member

Re: Bone mets - please join in

Are you on Zometa Roxy 12? I know that is the danger with bone mets but thought the biphosponates stopped that problem. Hope you are feeling better. Love ruth xx
Highlighted
Member

Re: Bone mets - please join in

Hi everyone. Thank you for your words of advice. I did start my treatment after bone mets diagnosis with Faslodex, which only lasted for about six months, then letrozole. Must admit I didn't notice any difference with the brands. When letrozole failed I was on Tamoxifen for about 18 months,then two and a half years ago progression in bones so onto Capecitabine. It was horrible at first with the hand and foot syndrome so the hospital reduced my dose to one week on and one week off and I have to say that this past couple of years I haven't really had any side effects apart from a bit of tiredness towards the end of the week on. I try to live as normal a life as possible but it is always there lurking isn't it. The flat roof has just been started. Not a lot of experience of builders but they do like their breaks don't they!!!! Hope you are all ok. Would love to join the Sussex meet up but it is a bit far for me. My daughter lives in Horsham and that is as far as I get into Sussex Im afraid. Have a good day all. Love ruth x
Highlighted
Member

Re: Bone mets - please join in

Hello everyone. I'm back home after another week in hospital for high calcium! Now normal again but for how long.? Feels lovely to be home again although not up to scratch yet. Did start a longish post yesterday but lost it!! Damn. Takes me a long time too.

Will see onc next week to see what the next step is. Trying to drink 3 litres of fluid a day is a nightmare. When I am in hospital I have I.v fluids so don't have to drink quite as much.😊

Hope you are all OK and you treatment is working well and have a lovely holiday Helen. Thank you for your good wishes. I am going to stop now before I lose this post! But I will post later. Have missed you all. Xxx

 

Highlighted
Community Champion

Re: Bone mets - please join in

Welcome Nanofthree, sorry you have to join us but welcome to the gang!

 

Yes Letrozole Femara is about £40 a box more expensive than generic, I told my Dr the generics upset my tummy and made me feel generally unwell so get Femara prescribed. Unfortunately even they cause joint pain BUT they've kept me relatively stable for over 4 years now so willing to put up with that

 

Chocolates glad you are going to represent our views on SBC/MBC day, thnak you. Was good to 'talk' on livechat earlier, will be good when more can join us.

 

Desi, I know Bognor is quite a way away but if you ever fancy joining us for lunch there is a Sussex Secs group and we generally meet every 4=6 weeks or lunch, most often in Brighton but sometimes other places like Eastbourne, Bexhill etc. Next lunch is 8th Oct, I do post under meet=ups in the Secondary section. Anyone with mets who wants to join us is welcome if you can get here.

 

Hope treatments tests etc go well and everyone has as good a week as possible xx

Highlighted
Member

Re: Bone mets - please join in

I would just like to add that I found the same with Letrozole. The Femara version gave far less side effects for me but very expensive so you won't get it if you don't ask. Xx