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Bone mets - please join in

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Re: Bone mets - please join in

hi all,

everything has been a mess!
first of all the pain has been bad really bad in her tibia! ive never heard my mom say shes in pain she cries and can barely walk sometimes!

second erubilin and immuno were suppose to start yesterday, but the clinical trial nurse forgot to inform her she needed to be off the arimedex 2 weeks ago so it doesnt interfere with the immunotherapy. so treatment got postponed although we found out yesterday the computer did not choose her to be one to take erubilin and immuno therapy together. but in order to still have the option to take immuno after 9 weeks incase the erubilin doesnt work she still needs to have stopped the arimedex for at least 2 weeks before.

so as for treatment were not sure if this is
good, if this is bad. im still far and shes just sooo sad, sooo in pain. erubilin is set to start on the 21st. thankfully ill be there. the onc believes the erubilin should be enough for the pain and she wont need radiation....but im not so sure because its causing her so much pain! the oxycodone and ibprofeun together arent helping!

also found out the lesion on the lining of her lung is 6.3 cm that also scared us to death....i dont know what happening and why its all so confusing this time....


joelle praying for a cure xoxo
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Hi funny face and carolyn 

 

i arrived home about 5pm and yes completely shattered but hey if it does some good i wont complain ,i do have a hospital about 20 minutes away but they can  not give perjeta for some reason and i do not have chemo as they pulled me out of that as had no quality of life with it so now i am on herceptin and perjeta,and always a wait ,but today was even worse as the 9am appointments did not get in until 11 30 so right behind all day ,never mind i will survive ,for all my hair is not,, as coming out badly ,i do  have a wig but feel uncomfortable in it ,guessing i will have to get used to it.

bye for now 

renee

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HI 

F

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Good evening ladies. I've not been on for a while because had confusing information from different consultants. Still not had biopsy because it's too small and the neurologist feels that its atypical haemangiomas, which are benign tumours. The oncologist said several weeks ago that she wasn't sure whether it was cancer or possibly a lesion that has previously healed. So, I'm having an MRI after three months to check what's happening. I've been following all your news and think you're all amazing! Also, incredibly busy because my co teacher is off and preparing to pass on old class and find out about new. 

I will let you know what happens next but meantime, hugs and best wishes to everyone. Xx

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Pmol
I live in fear of letrozole stopping working too , it has a lot of work to do!! I have always lost a lot of hair in the 20 months I have taken it ..and realised that the last 6 weeks it stopped. .but in the shower this morning ..hair thinning again so fingers crossed it's still doing something ? Maybe I have false hope ..oncologist says on average it works 3 months to 3 years ..everyone is different.
Xxx
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Hiya ff
Hope u enjoyed your weekend away ..it was a hot one here ..I huffed and puffed and was a real sweaty Betty! !!
Hello Renee
How are you now ..assuming a long day at hospital and you are resting now .
Hugs xxxx
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Renee, I'm sorry you have to go through a lot just to arrive at chemo. You must be exhausted and fed up before you even start. I hope they treat you well. It sounds like a long day. FF

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 PMOL, That must be so frustrrting to find out the drug didn't help at all! Best w I she's with exemestane. I'm taking it along with evermolimus. FF

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Yup PMOL, looks like it will be on July 17th xx

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Pmol, sorry to hear letrozole didn't work for you, good luck with your new treatment plan though.
Hugs Janette xx
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Hello Renee
You must be physic. ..I was just thinking of you as we haven't heard from you the weekend.
Best of luck with the treatment ..phew sounds like a all day thing with travelling too but enjoy a few cuppas and some people watching to fill in the day.
Phew it's still hot here but mustn't complain as before we know it ..it will be (swear word coming up) .Xmas ..aah.
Hugs xxx
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hello pmol,so sorry thee treatment has not worked but hoping the next one wwill be better for you.

 

carolyn ,hi just off to have my three weekly treatment ,i am just waitng for the ambulance,then the hour long journey which i hate but needs must ,,,hope you are ok and enjoying the lovely weather .

Renee.

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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