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Bone mets - please join in

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Waffles, That's fantastic news! Any ideas where you would like to travel too? There is so many beautiful things to see in this world! Are you a city mouse or a country mouse?

 

Renee, My goodness that is one heck of a work up that you need! I hope they can schedule some of those things on the same day, so you don't have to make so many arrangements to get there. I agree with Carolyn, sleep when you need it! I need more sleep, but lately I'm going through a spell of not being able too. I can't sleep more than 3 or 4 hours and I'm awake. 

 

Carolyn, No medication is easy for everyone. Letrozole kicked my rear more than anything I've taken (except abraxane). Vinorelbine and capecitabine were my easiest.

 

It's been an absolutely gorgeous weekend here. It has been in the mid 70's, no rain, no humidity! Friday night we met up with some friends for a porch party. There were 8 of us! Yesterday I went shopping for some pants, but the stores I was in were between seasons. No, luck! I'm down 70 lbs. now. I don't have any pants that fit! I have 4 pair of capris. I can't wear jeans to my new job. I figure if I buy some pants now they will fit til just about Christmas. I only get a few bc I don't like to waste t he money.  Then if I get some for Christmas they will last til Spring. I hope I will be finished losing. Then hubby and I went to play miniature golf! Winner has to buy  an ice cream treat for all. I won by 1 point! Today, I think we are just going to hang at home. Hope you are all having a good weekend!

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Hello Renee
I'm only letrozole and denosumab bone juice so it's like dolly mixtures compared to what a lot of the ladies here are taking.
Hence the reason I'm normally quite chippy ..if I was on chemo I would probably be a miserable old sod !!
Hugs xxxx
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hi carolyn ,

good grief i dont need to be any more tired as about 5 days out of my three week treatment plan i am so tired from getting up to going to bed ,in fact sometimes in bed by 8 pm on a bad day ,

i also lost 2 kilo in 6 weeks ,but i can not eat a savoury meal at all so guess thats down to that as only eating sweet things and ice creams ,etc i did tell him and he said he could give me fortisips but he wouldnt wish them on anyone as they are vile ,,his words not mine and to try complan from chemist,so will do that tomorrow.

i agree he does seem on tha ball ,i believe he is indian but not sure ,his name is MR KITTYPER .and as said very nice .

what treatments are you on Carolyn and what exactly for ,dont answer that if you would rather not ,its just me being nosey as per usual.

love reneexxxx

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Hiya Renee
Wow I think you must be teachers pet with the oncologist ..he's certainly on the ball with all the offered treatments ..but take it all as you are in very good hands by the sound of it.
But ..it's going to be tiring so don't be afraid to have a little afternoon nap etc ..let your body tell you if it needs to rest or sleep. .. I sometimes have a little nap but try not to as I really have no excuse as I'm not on very strong treatment like a lot of ladies here and should be able to stay awake !!
Loads of hugs xxxx
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Hi Carolyn ,

apologies for not been on here for a couple of days ,went to see onco on friday ,he wants me to see a gastro specialist about my stomach problem ,but first he wants me to have five sessions of radio on my breast,and still carry on with herceptin and perjeta,i dont know what to think as my first onco said hormon treatment would not help me and radio would not either ,yet this new one is doing both ,but the nurse i saw told me to look at this in a positive way as proved to her this new one will try anything ,no expence spared ,so now have to have ct scan ,heart scan ,bloods plus scan before radio therapy then start that and he wants all this in the next month and he will review me then,he is very nice and goes into everything ,but has me worried  slittle aat all these treatments ,also i told him i had been taking 8 immodium per day for 8 months and he answered by saying he knows people who have been on eight per day for 10 years and not a problem.

nice day here nut bad weather to follow i understand .

take care .

Renee

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Hello waffles
Pleased your little visitors are shrinking and that you are coping ..the body will tell you when to sleep so don't feel guilty about not being superwoman around the house !!
Wow ..enjoy your holiday ..lots of nice deals around and relax ...
Hugs xxx
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Hi Carolyn,
I'm doing well I think. I'm on 2 weekly paclitaxel. I got my last scan result 2 weeks ago and my liver mets have continued to shrink. However, the chemo does make me a bit knackered, but I suppose that's just to be expected. Good news is that my onc has said I'm fine to go on holiday abroad, so I'm going to book one tomorrow. Just a totally lazy holiday. Not my usual sightseeing long weekend where I nearly wear my feet out!
How are you doing?
Best wishes
Waffles xxx
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Hello waffles

And how are you as we haven't heard from you in a while ?
Xxx
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Thank you again ladies!!  FF

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So happy for you both FF and PMOL. Good results are such a relief. Hope everything goes well with your drug trial Jellytot.
Best Wishes
Waffles xxx
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Fabulous news FF. 

Jellytot you're amazing! Keep taking the meds. X

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Yeyy FF "stable Mabel" 😆😆
Hugs Janette xxx
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Yayyy well done FF!!!

 

JT good luck with sides effects and stuff, hope you settle in well ❤️

 

Xxx

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FF - Great news re Stable Mabel!

 

I've just taken my first dose of ribociclib, am officially on the trial!

 

love JT xx

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Hi Wendy,

 

I am on the same meds as you and have been for 4months now. The pain I have in my right hip turned out to be arthritus, this was found after a scan. Ask your oncoligist for if you can have a scan just to put your mind at rest, I did. I have secondry bone cancer on my scull and spine.

 

I had a bit of a blip with my blood test 4 weeks ago as the cancer markers had gone high. Oncolygist said it could be that the med are not working, but good news the next blood test shows the markers had gone down and she said that this happens sometimes and said meds are working. What a relief.

 

It's not plain sailing all of this but we have to get on with our lives. Some days I feel so well and forget I have it and others, like today , I feel good for nothing. I had a great day yesterday and got quite a lot of jobs done I had out off and today I am suffering for it. 

 

Sending Love, hugs and kisses to you all out there,

Crissy

 

 

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Such wonderful news funny face, what a relief.  I had scan on Tues so I am now in worry land !!  Enjoy your weekend and let's think positive you will have Christmas etc off from all these appointments xxx

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Ff.
What great news so enjoy this weekend and do something nice ..
Ringing the bells across the pond ..xxxxx
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That's fantastic news Ff. What a feeling it is as the anxiety floods away! Enjoy your new job - sounds good.

Bon xx

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Yay. A stable Mabel 😊, We all know the strain that scanxiety gives us so I'm hoping you had a fantastic nights sleep and ready to face everything in the morning. Your new job sounds great as well. As to planning ahead around the next scans that's my type of gal - treats and celebrations 🎉🎈🍗🎄

Nicky x

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Brilliant news FF xxx doing a happy dance for you xxx
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funnyface ,

great news and just what you need to hear ,long may it last

love reneex

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Dear FF,
That is really great news. Best wishes and hope that you remain stable.
Love


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Stable Mabel has her elbows on the table!! Trying to hold my head up. I haven't been sleeping well and I'm not allowing myself a nap! Maybe I will settle down now that my stress is getting less!! Dr thinks my post nasal drip is from whatever I'm allergic too. Lung mets were either stable or a little smaller. She did say this radiologist said that the lymph node in my clavicle  had reduced in size. She said she went to look at the CT herself and do a comparison. She said she really couldn't tell any difference in size and wasn't convinced it was in it. Will be watching it. I get to go back in 3 months!! She is keeping me on the same dose. Crossing my fingers that when I go back in 3 months that I'm stable again. My appointment is Nov 9th and if I could go another 3 months I wouldn't have to come back til Feb. I would be free from appointments for Thanksgiving, Christmas, New Year, and hubby 's 60th. One can dream!! FF

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Good luck Jellytot! You have been through a lot and I'm hoping things calm down for you. Hopefully this drug works as well as pablociclib has  for others. I'm  not sure if I have ever had a panic attack or not, but I have been frazzled and completely twisted!! I'm betting your hormone level through you into it! I will be holding your hand! Hugs!! FF

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Hello jellytot
All the best for tomorrow and your new drug trial ..think you will be a first here on the threads with that treatment.
You must feel that your life is all about hospitals at the moment so hopefully once it all starts you will get a break from so much to and fro !
Hugs xxx
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PMOL, good news! I had my ovaries and tubes removed on 17th July, so please ask if you need any information.

 

I'm a week into letrozole and so far, not too bad. Combined with the immediate menopause from my oophorectomy, I thought I was going to be a total wreck but I'm actually doing ok. I did have an awful panic attack on Sunday, I've never had one before, it was crushing and terrifying and lasted for about 2 hours. I'm not sure if it's a side effect from my meds or if it's just my body's way of going "holy hell you've dealt with a lot in 10 weeks", either way, it was not nice at all.

 

Tomorrow I'm off to see my oncologist about my trial drug Ribociclib and all being well with the scans I had last week (CT and bone), I'll be starting the treatment. When I had my bone scan, I could see the images of my skeleton. My ribs didn't look as lit up as before, so hopefully that means the radiotherapy did a good job. I could see my hips lit up though and they weren't like that before, but having not been on any systemic treatment (until last week) and knowing I've had a lot of pain there, I'm not surprised. What I saw could have been the new spread in the lumbar region my onc told me about. He said that treatment will remain the same and if the pain gets too bad, we can discuss rads there too. 

 

Anyway, please cross fingers for me for tomorrow, I'll let you know how it goes xx

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Hi Wendy
We can't tell whether we should worry about pains or not but they are not always symptoms of progression. Didn't have much pain with tamoxifen but have more with exemestane, Earlier this year I developed new hip pain, shoulder pain and in my head (the fact that my routine appointment had been postponed didn't help) but a scan showed no progression and i started to feel better. It's hard not to but don't assume the worst..

Bon xx

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Wendy, Enjoy yourself! Then you can return relaxed and ready to get answers!

 

Mollymop and Carolyn, Thanks for the support. Today went well at the job. Went around and talked to a few residents and got them to engage in conversations, coloring, bingo marker painting, bean bag toss, kick ball, and a ball toss. I'm off tomorrow! I do think it is going to be a fun place to work. The more I'm there the more I realize how relaxed of a place it is! I'm ready for my results tomorrow! 

 

PMOL That's fantastic that the cancer isn't spreading quickly! Good luck with radiotherapy! We all have So much on our plates. 

 

FF

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I have everything crossed for you FF, knowledge is power xxx

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Hello ladies! Some kind of good news!! Today I had a call from my onc who said that after speaking with other 3 MDT's they have decided that I am on the right path BUT the best news was that they reviewed the scans and the cancer hasnt progressed as fsast as they had originally thought 😁😁😁. So still on exemestane and zoladex, will have radiotherapy on spine and a chat with spine surgeon anyway...

also he mentioned about having the ovaries removed by surgery so will probably need more info abuot that too!!

anyway, good night 😴😴😴😴😴❤️❤️❤️❤️

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Thanks ladies. I am going to jet off and try to relax and then if still causing me to fret I will ring and try to get an appointment . Fingers crossed for you all whilst I'm away x
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Ff. ..best of luck for scan results tomorrow. .we are all holding your hand and hoping you have put on the big girl pants ready !!
Starting a new job is a bit stressful but hopefully you will take it all in your stride and settle in quickly too. Although it's only 3 hours a day , hoping the travelling time doesn't add to your day as I know in US ..it's all about distance between locations ..in the UK here where I live ..everything is all huddled together .
Hugs xxx
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Hello Wendy
I'm on letrozole for bone mets and have been getting more pain too in my hip etc. I'm seeing oncologist next week and am going to ask for scan etc ...it's always a worry what is happening inside the bones. I always try to think back and see if I have caused the pain myself with moving awkward or doing too much etc etc. My son's large dog jumped on my lap last week and so I'm blaming him for extra pain !!
Hugs xxx
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Wendy, Yes we all experience new pains. Sometimes it just goes away, sometimes it's something else and sometimes it is progression. No way of knowing until it's checked out. I would call and see if they want you to come before Sept. Good luck. 

 

Renee, That is a dreadfully long day for a two hour appointment. You are a saint being so patient!! How sweet of you to make lunch for your DIL. It's good for both of you. Wish I lived closer so I could take you for your appointments. 

 

Carolyn and Bon, Sounds like a great setting for lunch! That's great you can get together. 

 

I know I need answers, but not looking forward to results. I just don't 

 think I feel right. Feel that my breathing isn't as good. Unless my imagination is working in over drive. I will say though that my knees have calmed down a lot!

 

I finished two days of training! Ten hours of watching movies and signing papers. Today I actually start learning the job. I'm sure I will be fine. It is only 3 hours a day, 4 days a week. I figure I can get through 3 hours. My old job was 4 hours a day, 3 days a week. I'm going to miss my Tuesdays off! Thinking positive! I got this!!! FF

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Hi all

Just looking for some advice . I have been on tamoxifen and denusomab for 6 months now and apart from hot flushes have been managing well. However in the last week I have had hip pain in a new area of my right hip and mentioned yesterday at my appt and was told to see how it goes. Due to go on hols so trying to put out of my head but worried tamoxifen has stopped working and next appointment is beginning of sept. Anyone else ever experience new pain and turns out to be nothing?

By the way tipping it down here n London

Wendy
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hi carolyn ,

pleased you enjoyed yesterday,and yes the weather is dreadful here as well ,terrific rain showers then hot sunshine ,very strange to say the least.

 

went for my treatment monday ,best said soonest mended ,i went from the house at 11am and my son brought me back at 8 30 ,this was for a two hour treatment ,just waiting around the rest of time,so i was not amused at all,as you can imagine,apparently they have amalgamated two clinics into one.?.

go to onco on friday so will mention my knee and see what he thinks and will let you know .

 

will depart now as have daughter in law coming here on her lunch break ,i just do her some soup and a sandwich,plus a yoghurt so she is easily pleased 

 

take good care 

renee x

 

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Good morning ladies from sunny Devon. ..NOT ..it's wet and horrid here today ..road works everywhere too.
Thank you for the cream tea and catch up yesterday Barton and Bonariensis ..it was really nice especially in the castle surroundings.
Feel so sorry for holidaymakers and school kids with weather like this ...
Hugs everyone xxxx
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hi bon

thanks forr your comment ,i do try to keep cheerful ,but hard sometimes ,just waiting for the ambulance to arrive and take me for treatment .

your wedding sounds wonderful.

take care .

Renee

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Bon ....nice to hear from you and I hear we are trying to get together with barton soon for a lunch. Maybe you need to stop walking around in 4 inch heels if your feet hurt !! Ha ha ..sorry about your feet. .
Ff.
All the very best for your new job ..I'm sure you will settle in very quickly but you have twice the stress this week with scan and results too happening but we are holding your hand across the pond for you and hope e and e is doing its magic.
Hugs xxx
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Ff, good luck with your new job. You'll be great, lucky clients! Hope you get good news from your scan and your dobts about e&e are unfounded. Will be thinking about you   Bon x

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Hi girls! Excited and nervous! I start with orientation for my new job tomorrow and Tues. I start work Wed . I will planning programs for dementia clients. I was hoping to get away from "dementia" but the hours are perfect and weekends. I figure I will see what happens. At least I got my foot in the door. 

 

Tues morn I have my scan. Thursday results. I really don't think this treatment is working. God news is the rash and itching is calming down.

 

Had a great weekend on the bay. Twelve of us got together for a party day and 6 of us stayed. Blew up air mattresses and slept in the living room. Felt like a bunch of giddy teenagers. Was good for the soul.

 

FF

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Hi All

Kirky, I have a lot of foot pain from exemestane, have been walking round London, ouch, but went to a fabulous wedding, my nephew's at the House of Commons, reception on the terrace (has a marquee roof). Another side effect for me is chronic insomnia. The hotel where we were staying promised a good night's sleep or your money back. I didn't think it was fair to penalise them for my sleep problems but at 2.30 this morning i heard what sounded like very heavy rain. It wasn't, there was water pouring through the ceiling. Perhaps I'll get a refund.

 

I only found out about my bone mets because I had a CT scan for a gut problem which turned out not to be a problem. Goodness knows how long they had been there or how long it would have been before I noticed something and then whether any doc would have taken it seriously.

 

Suze, a slipped disc is no joke, Iv'e had one and ended up having an operation. Hope you get the treatment you need soon.

 

Renee, hope you get some reassurance at you appointment, you are truly inspiring and lovely to know

 

Hugs to all Bon xx

 

100_8871.JPG

 

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Hi Moijan
I've just replied to your text ..I honestly don't know really ...I get pins and needles in my hip and femur but I think everyone is different ..rads do help with pain levels.
Before I was dx with mets ..I had a large bruise on my femur which itched a lot ..after scan it was found to be a hole in the femur through mets ..it was never painful though.
Only a scan will define what's going on and put your mind at rest .
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This damn phone not Amer pain. .. a met pain x
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YES! Carolyn-I think they are used for that too- maybe yours is less likely to melt tho - but one things sure-the machine will sound a bit 'bonky' anyway sorry for not saying- it's the Royal Academy Summer Exhibition, (which turned into Moijan and her cheek exhibition) of artwork- I am an artist -tho on sabbatical. But not of that ilk!

So- if my pain turned out to be Amer pain- would they give me rads? And would that help? I know I'm an old hand at bone mets but up till now no symptoms in the btm
Moijanxx
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Hello Renee again
Back some time ago we started a thread about wheelchair users etc ..it's called femur pinning and I've just brought it back up for you to read ..you will see it in the list now ...enjoy
Hugs xxx
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hi again carolyn,

i have just read your last post and how right you are about people being in a chair and others thinking you are deaf ,some even think i have dementia as some nurse was explaining something to me ,she was on her knees ,talking so slowly as if i was a child ,then said ,would it be better if i wrote it down for you,arghhhhhhhh how i didn't hit her i dont know,but now if anyone attempts in the slightest i just say,hey i have lost my leg plus have cancer ,but not lost my mind ,it does so annoy me .

Renee

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Hiya sue
It's nice for you to pop your head over the fence and say hello ..we love to hear from you.
Aagh ..mobility scooters ..never tried one but went out twice in wheelchair after my hip op ....hated it and manage now with just a stick ...worst thing people think that because you are in a chair you are deaf too and shout and talk slowly .....
Hugs xx
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Hello Renee
Wish I could find a decorator for that price ..bargain and worth it ..my son's are so busy I don't mention it either. ..
I'm sure the herceptin is doing a good job ..it's a very good treatment ..unfortunately not for my cancer status ....your oncologist will be able to check things out to put your mind at rest.
Enjoy your day and big cuddles to your lovely dog ..we have had three alsations in years gone by and they were all lovely .
Hugs xxxx
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Hello ladies. Thank you for all your lovely comments about my good news. Pippin, I did leave like a bat out of hell but my heart is still on this site. I keep up to date every few days because in such a short time I got to know you all so well. 

It has been an experience joining this site and tbh I still wonder whether the doctors are right. 

I'm no longer on Letrozole and can tell you that my aches and pains have reduced considerably so Carolyn was right about that causing the most pain. 

Still waiting patiently for them to deal with my slipped disc and yesterday attended my first music festival using a mobility scooter for the first (and hopefully last) time. That was an eyeopener as well. Spent quite a bit of time being ignored and feeling lonely because couldn't get in with the crowd. But I blinged up the cart, covered my head in flowers and once I'd mastered the controls, shot through the crowds with a huge smile. 

I know I'm lucky and I've had an insight into how secondary breast cancer feels but I still belong here albeit as an outsider looking in. I still feel your triumph, scanxiety and pains. And I will be watching, laughing with you and crying from frustration that I can't help.

Much love and cyber hugs to you all. Sue xx