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Bone mets - please join in

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Re: Bone mets - please join in

Hi ladies hope your all ok great news janette sorry I wasn't on to wish you well before you had results. I have been up the lake district for a few days and you would of all been proud of me i climbed my first Hill helm crag I had a few panic attacks on the way but kept going and reached the top took 2 hours then walked to the top of aria force where the waterfalls are it was fab I've got photos on my phone but it won't let me post on private page ❤❤❤
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Re: Bone mets - please join in

Hi Janette

So pleased to hear you are a stable Mabel, long may it continue! Always good to hear such news.

Love Helen x

 

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Re: Bone mets - please join in

Hi Janette

Just seen your post to Marie and I'm wondering if you put an emoji, or two, in your PM? A while back I couldn't send PM's even though I had sent them to the person before. By a process of elimination the digital team from BCC suggested this was the problem - and it was 😊 Emoji's on the main, public, forum are OK as you can see.

Nicky x

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Re: Bone mets - please join in

Janette, what fantastic news...keep celebrating.

Funnyface...hope you are feeling a little brighter now. I know its a worry but your scan could have shown a lot more so try and be strong...like Carolyn says yo have coped so well for so long....

Carolyn..i wish i had your sense of humour...your 'tissue' incident had me in fits.

Hope everyone is as well as can be and sorry if i've missed anyone. xx

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Bit behind on this thread so forgive me.....Andrea what fantastic news...you were right to share it! I'm sure the fuzzy head the day after was worth it!!

Avrelia....sorry you have had to join us. I had fec as my first treatment for primary sb and was qite ill on it but i had an antisickness drug called aprepitant and i had injections for neutropenia so there is stff out there if you should need it. I found losing my hair very hard (been through it twice now and looks like a 3rd time may be round the corner) but , although i tried, couldnt face the cold cap after my first attempt, although many ladies find it ok. You will get through it though and hopefully have success. Keep posting. x

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Hello Janette, congratulations! Well done, and long may it continue! Stable is a good word to hear in our situation - wonderful.

 

Hugs. Barton.x

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Oh Jeanette 

 

we are a couple of wimps arnt we ?? When I saw Oncologist six weeks ago .. and he said stable scan etc -- I burst out crying and he produced a box of tissues from no where and do you know what I thought .. ugh Tesco  own brand .. surely I deserve some nice soft aloe vera ones or perfume ones after all the stress !!

 

What am I like ? 

 

Carolyn xxxxxxxxxxxxxxxxx

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Hi Marie, thanks for the PM I've tried to reply but it won't let me?? Hope you have a wonderful day tomorrow,  wishing your daughter every happiness for the future 💑👰👰

Hugs Janette xxxx 

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Hi Carolyn, no I don't see scans etc, really do not want to either!  I know I have cancer and that is all the info I want thank you very much,  that and my stable results every 3 months is enough for me.  I know some ladies want to know all that's going on and fair play to them but it's not for me!  No she didn't elaborate on the hole and I didn't either,  I think she knows I'm a stress head so keeps thinks brief. 

Well dropped Heidi off at the "hairdressers "she wasn't very happy so think she will be a sulky pooch when we pick her up!!

Hugs Janette xxxx 

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Ps .Jeanette
Enjoy Heidi today ...loads of doggy cuddles and kisses.
I've got Scooby my elder sons black lab here today and then tonight I have Ted younger sons boxer for a sleepover til tomorrow.
Dog hairs welcome at ours !!
Hugs xx
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Hiya Jeanette
Thanks for the info. Do u look at yr scans ? I don't as I'm a wimp. My October one last year scared me so I don't look now !! Did the oncologist say the hip hole was repairing with the denosumab as that is the idea of it ..I think.
I had a hole in femur and a hip like honeycomb and a crack in pelvis last Oct ..scary stuff after a year wasted of being told I had arthritus and a trapped nerve ..it got that bad.
Oncologist told me leyrozole stops feeding the cancer cells and they should die ..then denosumab coats and rebuilds the damage so hope it does all what it should do.
Hugs xxx
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Great news Janette, huge sigh of relief I'm sure!

Enjoy your day with Heidi, the perfect arrangement 🐶😊

Nicky x

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Thank you ladies for all your good wishes.
Carolyn, I did mention about my hip giving me some pain and she reassured me that pain doesn't always mean progression! It's just that I basically got a hole in my hip where the cancer is (yikes that was too much info for me) so don't be worrying when your hip plays up lovely!
Got my little Heidi for the day, we are taking her to be clipped she's very rag tag now 😀
Hugs Janette xxx
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Well done Janette.now you can do hoovering❤ .sharonxx
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Great news Janette! You can relax now
Best wishes xxx
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That is excellent news Janette! Learnt today of someone who's been on Letrozole for 10+ years!  quote nice to hear! 

 

A xx

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Fantastic news Janette - a very positive appointment by the sounds of it!

xxx

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Yes hats of to letrozole!  Off to bed now I'll save my celebratory drink for the weekend, my head is still banging hoping it will be gone by the morning now results stress is over! 

Night ladies Hugs Janette xxxxxxx 

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Whoop whoop ....well done now u can enjoy a glass of something.
Stable is good and the targeted radiotherapy sounds like it will b better too.
Three cheers for letrozole .....
Hugs xxxxx
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Evening ladies, well Janette is AKA "stable Mable" yeyyyyy!  Onc very happy with tumour markers at 35 she said a person's normal range is 30!  Scan shows still stable mets.  I did mention my painful hip and she said at the Christie they are now very close (roughly 6 months)  to targeted radiothary which could work for me, I've already had radio in that area so can't have anymore. Also took in a print off of some simvastatin info which she read and said that at the moment there isn't enough research and evidence to say that it would benefit us secondary ladies. 

Hugs Janette xxxx 

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Natalie hope all ok.....yes glad you got new hoover..i like having no cord on mine just zip round the house now.take care Sharon..hope the tv quest goes well.x
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Not sure ladies if you got the message from the moderators but if you belong to the private forum ..it's easy from your mobiles now ..at the top there is a pink box called groups . Hit that one and u r in in the inner sanctum !! Word games , gardening club , book club etc .
Xx
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Bonjour marirose
Glad u r having a nice time in France with the family. Hope u didn't get caught up in all the delays last week at the ferry port. I think if it had been me ..would have turned back and given up !!
Enjoy yr holiday and cape break too.
Xxxx
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Hiya louboo
Wow ..what a bcn you have ..these little things matter so much ..my last scan result was a 9am one and so first in for the day but bad enough the night before with worry!
It's all very scary and sometimes better we don't look too far forward at what could happen.
Day at a time ..
Xxxx
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I know exactly how you feel Janette, I mentioned to my BCC nurse that I wasn't sure I could sit in a waiting room again, waiting for results and said to me, and I quote, 'I would be happy to see you outside of clinic time, at your convenience, to talk through the results, at least I can set aside dedicated time to give you and also I could discuss the results & way forward.

How lovely is that of her - these nurses really are the best.

I have bone mets in vertabrae L1, L2, L4 and T12, T9, T8 and T3 - so not good to read about the risk of paralysis Man Sad

Keeping everything crossed that results today went well for you Janette.

xxx

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Hello avrelia
I'm glad yr first chemo went ok ..it's the fear of the unknown really for the first one. If you keep a daily diary of side effects you will b able to plan your life around good and bad days.
Positive thinking ...the hair loss might drag u down a bit but you have the right attitude.
I'm afraid my immobility is down to hip pelvis and femur Mets which restrict the amount of weight etc but I do try to do as much as poss.
Anyway rest and relax.
Hugs xx

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Hi stresshead
Just catching up on threads.i have had Denosumab nearly 4 years in fact my first jab nurse had never heard of it. I have had no trouble with it and my bones have had good results so everyone seems to have different se all the ladies I know who are on it don't have se.Mine used to be every 4 week but since cape it has been 6 weeks as I am at the hospital every 3 week.
Enjoying being with grandchildren in France.

Love and (((hugs ))) xxx
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Hi all, I am back from my first chemo, had been given two kinds of anti sickness tablets-domperidone and dexamethasone. Still not quite sure what the nurse said to drink first tonight, because the other one has to be started tomorrow. Anyway, I think it was the dexamethasone to start with today and go on 3 days. The whole chemo was not as bad as i expected, so, just to share to everyone who had not had their chemos yet-NOTHING to worry about. Be positive and all the side effects will be far away, except for the hair loss I think, but just think about the chance to have a completely new hair afterwordsSmiley Happy I wish I will not be blonde though.Smiley Happy

Speacial thanks to nicky, I will surely book an appointment and check this out, although I simply want this country to give me my health back, no need of funds, really....

Andrea, when is this meetup in Sutton, share your experience afterwards please, where are you from btw?...

Carolyn, keep on moving and find something to keep ypur mind away from this ugly thoughts of paralysis, what do you like doing in your free time? Adapt this to your current state and you will enjoy, I am sure. Well, if you want to climb Everest, that might not be the ideal option, but ....Smiley Happy

Sorry, if my humor is a bit strange, that is my usual way to get me out of the stress as well. I do like people to be happy and smiley, so please send me all your smiles and I am sending lots of love and good vibrations to you all ladies.

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Jeanette ..I know what u r going through and most of the other ladies do here too.
You seem to get the scan stress through your head ..I get mine the other end. Ha ha.
Loads of hugs to my letrozole buddy x xxx
Ps ..it's warm and sunny here .☺☺
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Hi ladies, miserable wet day here, just jumping on to say hello before I go to the hospital for results 😨😨 heads still banging, couldn't really sleep last night either......need it to be a few hours from now when it will all be over and done with! I said to hubby I wish he could just go for me and tell me results! 

See you in a few hours, hugs Janette xxxx 

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I was only joking but gosh its serious . To b honest all this treatment sorts one thing out but upsets another.
I think u do so well though and yes loosing the mobility is the worst after being so active in years gone by.
I hate not being able to drive and walk very far too and wander what we have all done to deserve this ...
Glad u had a nap and will you be able to get a bit of physio to help ??
Hugs xx
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Carolyn, I had a little snooze! I think what us freaking me out is that since this time last year mg legs got weak.I had been blaming it on the ibrance and letrozole. Chemo can weaken your muscles, metronome has made my joints so bad that I sit around more. The Dr said the steroid can weaken me. I read that with the T10 vertebrae that if can weaken your legs or paralyze you. So the weakness thing is flipping me out. I can't step up one step without a rail to hold on too. I have a friend that I don't see very often who is a physical therapist. She is making me up an exercise routine. Going to try and get leg strength back. FF

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Hiya funny face
Well after living ten years with lung Mets ..I'm sure one little spine met isnt going to bother you too much !! Could b worse so enjoy your sleep, rest and relax.
Hugs xxx
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Very tired tired today! I have weaned myself off steroids. I'm sure that's why I'm extra tired. Bone scan results in. Only one met in spine at T10 and its stable. It scares me though. I guess I got used to my lung mets and adding something else t o the mix bugs me. Ok back to bed I can't hold mg head up today. I didn't get to read postings, everyone hang in there! FF

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Hiya Andrea
This denosumab is a newish thing but you friend is done well on it.
I don't know whether u read the article in
the newspaper recently now but they are trialling using the denosumab for ladies with the gene (bc something) and are hoping that it will prevent bc completely by a monthly injection in women that carry this faulty gene.
They must think its good as it costs £350 a time !!!
Xxx
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Hi All, I know what you mean about the Denosumab and side effect Carolyn. I'm 'happy' to take it though as I know someone who's been on it for 6 years (original trials), she was given 6 months to live due to secondary bone & liver mets being so extensive (original skin not breast cancer) and she is still with us! Her scan down one side was covered and now there are a couple of spots that have been stable for the last few years..

I know it's not the same origin as us but still...

Sorry to hear about osteonecrosis Helen, it's one of the worrying things about Denosumab.

Andrea xx
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Hello Helen 12
I think the jury's out on the denosumab injections ..I might be wrong as not good on medical facts but its supposed to protect the bones from Mets and strengthen them . The side effects have always worried me too but needs must.
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Hiya Helen and everyone.
I think you will enjoy sidmouth as its a very old type town. The best beach is Jacobs ladder which is around the bend from it. Quite easy by wheelchair .
Lyme Regis will interest you too and a film with Meryl Streep ..French lieutenants woman I think was filmed there.
Lots of interest around ..I will think of some more and pm you as it will bore the other ladies here !!
Hope u feeling better.
Xx
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Morning ladies.

 It is ages since I posted on here but have been catching up with everyone's news. We had a holiday over the 'other side of the pond' which we were lucky to take. It was for my brother's (second) wedding and was a lovely family affair with 14 of us travelling to New York to be there. Very exhausting as the weather was so hot and humid but great to share with them. Over the 8 years I've been living with secondary BC I have seized the day and made sure we do as many nice things as we can. We book holidays ahead ie in between scans(!) but always book them so we can cancel them, that way it takes away the stress and worry in case we have to cancel (which we've had to do on several occasions) but gives us something to look forward to especially whilst I'm feeling well enough and mobile enough to enjoy them. I agree with Andrea about the expiry date!

Anyway enough about why I've not been on here.

Janette, good luck for your appointment later today, no doubt you are a bag of nerves, as we all are, waiting for results. Fingers crossed for you. On a different note thanks everyone for the Hoover debate! I'm looking to change by older drag along one so any reviews have been gratefully read and will see what you think Janette once you get your new one.

Avrelia in answer to your question about benefits then yes you should be entitled to them. Patients having chemo can get ESA but I'm not sure of the actual rules, it may be if you've had to reduce your hours but it would be worth checking with MacMillan or another specialist advisor to find out. Also you should be able to get PIP whether you work or not, again they should be able to advise.

Helen12, sorry to hear about the osteonecrosis. I know this is a real risk when taking bone strengtheners but don't have any experience or advice I can offer. It's certainly not like the clicking that I know I have in my jaw.

Hi to all newbies and oldies, hope you are coping with with either treatments or the wait whilst you find out what treatment you will be having. It's a tough world is SBC ladies live in but this forum helps so much with support, advice and general chit chat which helos us know we're not alone.

Nicky x

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Hi ,thanks for replies ,janette I had clicking jaw then have problems biting jaw together won't align properly ,have aching like I've been chewing gum all the time ? And then in a week had two teeth break off .Do you think that the denusumab does a similar job to the hormonal drugs Helen xx
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Hi alay got out of hospital yesterday.. Pneumonia and a pericardial effusion (fluid around the heart).

Was a lovely ward and I quite enjoyed my time there! Feeling better but the heart thing needs monitoring. 

 

Janette - fingers and toes crossed for you tomorrow :-)))). Hoover sounds good! Can't sleep so might go browsing in a mo.

 

Welcome to the new ladies, frightening times. I've been here since Jan 16 with bone and lung mets and once I got my head round things after a couple of months I've been having as many adventures as I can squeeze in.

 

Infact the next one is on Monday.. Me and new hubby are hiring a VW camper in Sidmouth and have 5 days of fun ahead of us but no plans. Carolyn or anyone who knows Devon/Cornwall.. Any ideas of where we could go.? I'm after quaint towns, nice scenery, not too bothered about shopping (as hubby gets too bored!) maybe a place of interest? Like a good museum.. Well he does! Happy to drive for a few hours each to get about.

Note.. I am in a wheelchair so no massive hills!

 

Any ideas greatly received.. Apparently I'm in charge of navigation. 

 

Helen xxx

 

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Hi Sharon, I've bought a Vax cordless hoover, got a great deal off the Martin Lewis website, should have been £299 but got it for £129....bargain! Only problem is I've got a week until delivery, oh well!!!😆😆
Janette xx
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Hi Helen, sorry to hear about the problem with your jaw, can I ask what symptoms you have? I've noticed I seem to get a kind of clicking jaw sometimes, don't know if that has anything to do with denosumab?
Janette xx
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Natalie I bought a Bosch portable stick type hoover .it charge last an hour time yo go whole house.it was about 170 pound worth every penny dont even use my heavy old Dyson anymore
..
Had it about six months..its light as a feather and powerful..sharon.x
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Hiya Helen.
This denosumab is a worry with side effects but after two years its probably done its job and made the bones stronger anyway ? It doesn't pass through the system and stays in the body ..so I have been told.
I had to wait ages to start mine due to having a couple of teeth out first.
My oncologist said to eat loads of cheese and dairy stuff until I could get the injection
Probably end up with a heart attack and high cholesterol now !!
Hugs xxx.
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Oh Jeanette
Not having much luck are you ? I can't b faffed with researching things ..just rush to Argos ( across the road) and grab something ..pot luck these days with it all.
Grandsons tv broke too yesterday ..lucky enough had a spare.
Well you will b on the " scan results diet" tomorrow waiting for your results ...it's a good one ..loo visits BUT the jeans fit better for a few days !!!
Will b waiting to hear from you .hope its good and you get a glass of something ready to celebrate .
Hugs 💟💟
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Hi ladies ,have had bone secondaries for 4 years been stable with arimodex and been on tablets and denusumab for nearly two years ,have now got osteonecrosis of the jaw and can't have the bisphonates now and there is no alternative ,really worried about not having bone strengtheners now .Has anyone else had similar or have any knowledge ,feeling so down xx Helen x
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Thanks Andrea!
hahaha I've been wishing my washing machine to break I've never liked it, sods law it will probably go on forever!!!
Hugs Janette xxx
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I'd be careful what you use tonight Natalie as they say things come in threes (Hoover, TV, ........)

Will have fingers crossed at 3:45 tomorrow for you!

Andrea xx
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Evening ladies. 

Thanks Carolyn, results appt at 3.45 tomorrow  so have got all day to sweat it out!!! I've had a banging headache all day think it must be the stress of tomorrow!  Well, I have finally ordered a new vacuum 😆 oh Carolyn you won't believe what happened last night, I was getting square eyed keep googling hoovers and reading reviews I said to hubby I've had enough of looking now let's go to bed and watch TV , 10 mins into Law and Order SVU and the TV blew 😁😁😁 so now I'm on the hunt for a new telly too!!

Hope everyone is doing okay, hugs Janette xxxx