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Bone mets - please join in

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Re: Bone mets - please join in

Hello pmol
So sorry the letrozole magic hasent worked ..hopefully exmestance will be better
Hugs xxx
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Not yet... my onc nurse was BRILLIANT as she pushed for it.   Onc wanted to speak with radiologist first before making the decision and she said to request it anyway and if we then need to cancel it then so be it but at least this way it's on the pipeline.  Have you had a date for your op?? Xxxx

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Big hugs PMOL. Have they given you the MRI date yet? xx

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Hi girls - sorry I haven't been in touch... had oncologist thursday and they said the letrozole hasnt't worked 😞 Tumors have grown and spread and there is a question mark on my liver so will have to have an MRI to investigate further.  If they think it's cancer then I'll have to have chemo. Don't know what the treatment plan would be at all... just trying to take it one day at a time... in the meantime I have started another tablet (exemestane) in the meantime 

just hoping that this works...

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Hi Belinda, totally understand you wanting a "forum break" I do this from time to time. Sometimes you just need to step back and have some time out.
Take care hugs Janette xxx
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Hi Chrissy,

I was only diagnosed 7 weeks ago so I don't have any advice but am sending hugs

xxx

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Oophorectomy advice please! Looks like mine's going ahead this week. How long did you take to recover from the op and what are the side effects like? xx

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Haven't posted for a while but do catch up every few days with whats going on with you all, plus nothing to was going on until this week.

 

I have Secondry bone cancer diagnosed 12 weeks ago, in my spine and skull. Started on Tamoxifen and 4 weekly injection of Denosumab. 

 

I saw my Oncologist Tuesday and she told me my cancer markers were raised. I had another blood test that day and she said if the markers had raised again I would need a scan to see whats going on. 

Today I had an appointment to see her this Tuesday. Cancer markers must have risen. 

 

Has anyone on this treatment had the same thing happen to them and what treatment did they change to?

The thing is I have felt so much better since they changed Anastrozole to Tamoxifen. My joints are not so stiff or painful, it was giving me false hope that the treatment was working, obviously not.

I just want to be stable for a while, as we all do.

 

Have a good weekend

Lots of love to you all,

Crissy xxxx

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hi ramade,

you can have an M R I scan for the brain ,i know as someone has had one i am in contact with ,but also my breast cancer has gone to my lungs and liver ,but not the brain or bones ,so am hoping it does not spread further

take care renee

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Joellek, this is interesting because breast cancer tends to go to bones and brain first but I don't anyone who has brain scanned, perhaps it's dangerous, can anyone enlighten us?

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hi ladies,

i am always bombarding you questions...not sure why but every few days we have a new pain. shes having really bad headaches? should we be concerned about brain mets? or could it be the lesion on her forehead on the bone?

she had zometa this past monday and she starts erubilin on monday. does the pain eventually lessen?

thanks


joelle praying for a cure xoxo
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Hello Catherine
Welcome to our world. .I'm sure your advice will help a lot of ladies here ..lucky enough I only had a lumpectomy so don't suffer with the booby problem.
Thank you for joining us.
Xxx
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Hello ff
Hope the sea air at the weekend helps your rash but I think the hot weather doesn't help our skin either soooo have a lovely break ..xxx
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Hi my names catherine

i too struggled with the prosthesis I found  them quite heavy and they weight my bra down a lot. I find the softie that the breast care nurses give you miles better, you can take some of the stuffing out of them too, to make them the right size for you. Also I find vest tops very useful for lower cut tops....H&M do longer versions too in basic colours. Hope my advice is useful to you.

 

kind regards

catherine 😘

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Enjoy your break funnyface,

Renee

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Well went to the oncologist. We decided today that the rash could be from the med or maybe my body spray. That my skin could be sensitive to the drug. I was to stop the body spray for a week to 10 days and let her know how I was. If I still have the rash then she would lower the dose. Well that has all changed since this morning. Blood work has come back that I'm having a true allergic reaction to something. This means that it is not the normal rash caused by afinitor, but I could still be allergic to it. She wants me to take benadryl for now. If I get worse then possibly steroids. She isn't worried about the post nasal drip said it could be starting to show that the drug isn't working or from the drug. Scan Aug 1st results Aug  3rd.  Leaving tomorrow after work for the beach. Will be back Monday! Have a good weekend. FF

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Talented lot we are Barton and Carolyn!

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Another day, another appointment, this time with Gynaecology to discuss my oophorectomy. No operation date but a promise it would be soon. I need a scan on my ovaries first, that will probably be next week. Then week after that probably op so at least not on my birthday (13th)!

It was mentally horrible tho, the waiting room was in the same place as the ante-natal unit so all these pregnant women were waiting there too. Not very well thought out.... Xx
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Well ff and barton ..
You have started something here now. .
So lets recap ..Barton can do a wiggle and a shimmy....and you ff can do booby winking ..maybe it's going to be something for "you tube !! " I could do background music with my creaky joints and I could do lighting too as I have a torch on my new walking stick!!
🎶🎶🎶
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Barton, I will help you out by throwing myself under the bus! These water balloon implants don't wiggle. The good part is I can go beamedd, something I could never do with my huge ones! Now, these can be quite entertaining! Because they are put behind your muscle if I contract my muscle I can make each one move individually. This I call winking! Doing both is my four way emergency flashers!! We could be quite a team! FF

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Jellytot, You must be stoked!! Time to celebrate!! I have my one man band out for you. Marching around the kitchen counter tooting a horn and changing pot lids!! Now, I think a toast is in order! Cheers!!!! FF

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CAROLYN!!!! I'm never going to live this down now, am I??? Thanks for that Smiley LOL

 

 

Hugs. Barton.x

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One two three. .ladies let's do the "barton wiggle" this morning then !! Ha ha.
Xx
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Jellytot

That is brilliant and long may it last,just going to try barton's wiggle

take care Renee

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Brilliant news, jellytot! Long may it continue.

 

 

Hugs. Barton.x

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Carolyn - I promise I won't do it while we are having coffee in M&S! Smiley LOL. I promise it is sonething I only ever do when I am alone! You bend over, grab the bottom band of your bra, and give a shake and a wiggle! I have it down to a fine art now.

 

Hugs. Barton.x

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Jellytot, that's great news!!!!
Hugs Janette xx
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Jellytot 

 

That's good news and long may good things continue

 

Wendy 

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PET scan shows zero progression anywhere!!

Also had my first zometa surprised upon me so thank goodness I went to the dentists yesterday!

JT xx

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Chris
It's so nice to hear from you and ladybird but the heat doesn't help the pudding feet ..bless.
We are like you ..holidays are a thing of the past as hubby has copd and I'm limited for walking far ...so being retired we treat everyday as a holiday ..go out for breakfast or lunch ..gardening centre, shopping etc. We also doggy sit the sons dogs, have grandson in for tea after school and take in parcels for the neighbours ....so do lead a useful life although bungee jumping and zumba classes are a thing of the past ...ha ha .
Hugs xxx
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Hiya Jeanette
Oh the shame of the big knickers for hospital visits and modesty but I thought for scans I would get one of those over the head bras with no.metal ..well is it just me but they are so tight you need to be a Olympic gymnast to master the art of getting into it! They roll up , get caught on your earrings and when you think you have mastered it and pat yourself on the back ...you realise that you have put it on inside out ......
Hugs everyone xxx
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Hi Joelleck, really sorry to hear your mum is suffering so much with pain, I understand her not wanting to take the painkillers regularly BUT that is a big mistake, it's a lesson i learnt at the beginning of my dx, to get the full benefit/effect from pain relief you must take them at regular intervals to keep the pain at a bearable threshold.

Carolyn, I love the big knickers! 😂😁I'm part of the big knicker brigade, got CT coming up.....it never gets any easier does it!
Very warm here now in Manchester.....not complaining tho!
Hugs Janette xxx
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Hi ladies
Just checking in. No problems with Ladybird other than bad leg pain and pudding feet still. She spends a lot of time just resting on the bed watching the birds on the feeders through her window. Funnyly enough they are tits!
Last weekend we let our daughter and family tow our caravan to south Cheshire for the weekend. They really enjoyed themselves although it was a bit sad for me as it signalled the end of caravanning for us after 45 years.
Not being able to walk far is our big problem and Ladybird feels unable to stay in b&b's due to her dodgy bladder.:-(
Hey ho things could be a lot worse!
Good luck everyone
Chris.
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Oh Barton ...sorry but Im  laughing at you giving everything a wiggle ...please don't do that when we are having coffee in m and s .....I shall disown you.

Hugs 

 

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Oh Barton ...sorry but Im  laughing at you giving everything a wiggle ...please don't do that when we are having coffee in m and s .....I shall disown you.

Hugs xxxx

 

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Jellytot, My goodness  you do know how to sign up for all the fun activities! I'm glad you passed Inspection at the dentist! I'm like Carolyn, My teeth are barely hanging in there. I lost 3 molars 2 years ago. It was like the end of the world to me. They all had already had root canals and crowns, one had 2 root canals. Luckily you can't see them when I smile. My daughter is 31 and never had a cavity. My sons only have had a few. They didn't get strong teeth from me!

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Hello Pippin, I'm sorry but I had to laugh at your prosthesis/bra problem, but only because I have very similar issues Smiley LOL. I have found the only thing to do is ocassionally bend over forwards and just give everything a very firm wiggle! Sorry I can't be of more help - if you do hear of anything that works, I would love to know!

 

Hugs. Barton.x

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hi ladies,

my mom is experiencing a lot of pain,
when trying to sit and get up or going down stairs or even getting in the car.

she hasnt started chemo yet....any recommendations for the pain? i dont know creams? patches? painkillers? they gave her oxycodone but shes trying not to take it every single time


joelle praying for a cure xoxo
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Oh Jellytot ..  .. you have had so much to deal with but envious of you having " Perfect teeth" .. my nashers are really drilled and filled to a minute of their life ... thanks to old age and bad dentistry as a child. 

Hugs xxx

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Big girls pants.jpgI think a lot of us are having scans this month so here ladies is the big girl pants we need to pull on to deal with it all .....hugs 

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Hello lovelies, sorry for my absence. I've just been recovering from my rads marathon. Yesterday I drove myself to the dentists which was a big step as I haven't driven in about two months. I'd convinced myself I couldn't because of pain and then I think I had become almost agoraphobic so I'm proud I did it. Dentists was just to check my teeth are ok before starting zometa, she said they're looking perfect, huzzah! This afternoon I have a meeting with my oncologist, I think it's linked with my trial and the PET scan I had about 10 days ago but we shall see. Tomorrow I have an appointment with gynaecology to discuss my oophorectomy, fun times.... JT xx

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Pippin, I had bilateral and reconstruction. This sounds aggravating! I hope someone has some suggestions. FF

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Joellek, I had xrays bc they thought I had pneumonia. I wasn't getting better so after two rounds of antibiotics went to see Inc bc xray had showed congestion and nodules. Onc walked next door to hospital to look at xray himself. He didn't like what I saw and got me in for an immediate CT. They didn't like the CT and immediately did a biopsy. Came back mets. They followed up with a bone scan. No bones at that time. Went to one spot in spine years later. I've never had a Pet scan. In 11 1/2 years I've had  2 bone scans. One in the beginning a n d one at 10 year mark because I insisted since CT of lungs showed one bone met. My onc never does tumor markers. Says they aren't reliable. They don't usually scan the brain unless there is a problem. I had an MRI of the brain at about 7 years. It was TMJ causing all the pain. I'm sure Dana Faber is doing what is needed. FF

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Oh pippin ..you poor love ..must be so uncomfy but I have no experience as I only had a lumpectomy which doesn't affect me at all.
Hopefully some ladies here will be able to help out with support .
Hugs xxx
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Hi

Red lump under my  arm had gone when checked out. Just a bank holiday Friday thing. I know never to self examine on a Friday (only causes anxiety all weekend before you can ring someone Monday, or Tues in the case of a bank hol) but now I know not even to look under my arm on a Friday!

 

Nearly driven mad today by breast prosthesis trying to push the remaining breast out of the way (like having a toddler on each knee and they both compete and try to push each other off even though there is ample room for them both) such that I just cannot wear a V neck top. I cannot work out why this is happening. Prosthesis is the right size and so is the bra. But no bra will fit central and the fitter at the mastectomy bra shop admits this and has no solution. It is the little things that get to me. Any one got a solution?

Pippin

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What am I Iike? A mother duck checking her ducklings are all ok!!
Glad you are all doing ok.
Hugs xx
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Hi all

I have been reading but not responding as busy couple of days. Went horse racing /abba night on Saturday so spent a Sunday doing housework. Yesterday had denusomab injection and today boob inflation. Fingers crossed will get some respite for a few weeks before my next set of appointments and then off on hols yippee. Enjoy the sunshine wendy
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hi,

i have a question for you all when you were dx with your mets how did the scan process go?

so first my mom had xray then mri on her tibia where the pain was and a larger lesion was found. next she requested a bone scan where the onc only wanted a biopsy at the time. bone scan showed numerous spots and biopsy showed mets. so next the onc asked for a ct scan for her lungs and liver....should he have checked anywhere else brain for example??

im trying not to be angry or frustrated with the situation i trust the care at dana farber boston and her onc is very smart and teaches at harvard univ and the whole 9 yards....but now im just sad why didnt he do scans every 6 months for example? why was his way we dont scan unless theres a problem....

is there any other tests we should be asking for? i read you guys writing about tumor markers? no one has said anything to us about those?

lost, confused, sad....and keeping myself together when i talk to mom!

joelle praying for a cure xoxo
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Hi all

 

Still here... just trying to cope with anxiety as first results appointment looms so keeping my head busy with housework, work, family, Wimbledon... or just sitting outside in the sunshine!!! 

 

xxxx

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Hi ladies, sorry Carolyn for the absence I know your not a happy bunny if we don't check in!
I've been busy with work etc.
Hope everyone is keeping well.
Hugs Janette xx