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Bone mets - please join in

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Re: Bone mets - please join in

Hi Carolyn

Starting on small sounds a good plan. Maximum dose is 10mg but there is also 5mg and 2mg. Don't know why the hospital I attend seem to start on the high and if you can't tolerate it reduce. Had same when I started higher dose first then reduced.

I am sure on the lower dose you will be fine. I took both tablets after having my evening meal. Never stuck to same time each day.

If you and hubby still go abroad on holiday you will be fine. I did sometimes twice a year.

Good luck.

Linda

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Carolyn.....just noticed that  you are starting e/e on Thursday. I know nothing about it so why am I here? Well, the range of potential ses is always wide and one thing I learnt on my recent travels with docetaxel is to try and be prepared. So ask for anything they can give you for  your se box. II needed loperamide. So glad I had it in my box! But my most useful discovery.........after finishing with docetaxel because of allergic reaction returning....... was for mouth ulcers. They arrived  unexpectedly and lasted for a month. Thought they would last forever! Anyway my magic discovery was Iglu gel. I tried Difflam, given by chemo unit. No good for me. Bonjela no good. Something else from the chemo unit that came in sachets burned my mouth and throat! But........everyone different. It might be worth having a little tube of Iglu, or at least know about it to send out hub. It can be bought anywhere. It makes a gluey cover over each ulcer, relieves pain almost immediately and aids recovery because it stays put. No stinging at all.

 

Just a thought. And perhaps others struggling with mouth ulcers might find it worth a try. I know how individual we all are, but that is why we need to know the full range of possibilities. I would try anything at all at one point!! They eventually disappeared although my mouth is still sensitive, so I avoid crisps etc.

 

Well, I took a long time to say very little! Take care everyone, particularly those new to the thread. I haven't adapted to the new time of day yet..........springing forward on Saturday night!

 

mo              x

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Re: Bone mets - please join in

Hiya silver

No your treatment is the first line regime and letrozole is doing it's magic for you by controlling the pelvic mets so enjoy just popping that little pill every day ..
Just to recap ...I was dx with primary bc 2004 ..did the lumpectomy, chemo and rads with tamoxifen etc.

Went 11 years clear. .well and healthy. .only saw gp twice in that time ( that was mosquito bites!! ) and then started getting hip pain .. ( thought it old age as moved house) doc dx sciatica / arthritis !
Scan showed mets in femur , hip , spine and pelvis Oct 2015 ...had a femur pin to support hip etc and then just letrozole and denosumab to now ..

Letrozole can work for years ..we have ladies here 7/8 years on just this little daily pill ...things have progressed for me but I have had a good long run with minimum problems but I'm 65 and retired so don't have the hassle of working these days ( I retired 3 years ago)
So enjoy life now ....I'm sure your daughters will be there for you if you need them but at the moment probably see you as fit and well so sort of forget things.
Thursday is the new treatment day ...aagh .

Hugs xxx
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Hi Carolyn,

 

Wow!!! Bingo!!! You've summed up exactly what its like wrt family & friends. I loathe the....But you look so well. My grown up daughters have switched off the whole shebang & sometimes, I'll not see them for up to 8 weeks. My eX has told them to really 'live' their lives and they are obliging & boyo does it hurt! I've tried everything to alter this state of affairs, but to no avail.My friends say they will regret in time but I don't want that for them, either,

 

3 years ago, stage 4 @ initial Dx...mets in pelvis, but now I'm coasting along on Denosumab injections & daily Letrozole. Is this bit unusual i only see my oncologist once every 6 months for a CT scan chest & abdo.? I actually feel like I've just been doing exactly as I've been told....

 

When do you start your new treatment......sending you ooodles of bravery/whatever u need....

 

silver xxx

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Hello MArley pop

Welcome to the threads ..wishing you all the best today with treatment plan ...it's a huge kick in the teeth when just as you think you have conquered it all ..it comes back but you will feel better when you know exactly what the regime is going to be.

Whatever it is. ..let's hope it kicks the little blighters .

Hugs xxc
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Hiya lyndyloo

Not sure of dosage yet but he did say start small and he could always increase it ..aagh.

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Hello silver lining

Cancer is a lonely journey as family and friends just think it's about taking a few pills / chemo and its gone like the flu !! People don't realise that most of our treatment is ongoing back to back stuff either.
What treatment are you on after 3 years of secondary?
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Hello ladies, never thought I’d be here again.. I had TNBC grade 3 in 2013...thought I’d cracked it. Just been told that cancer cells have been found to my chest bone. The nurse told me that this was treatable and I would have to take bone strengthening tablets. Have my appointment today to find out all the details.
I’ve had a read through of the messages, not all mind as there is ‘loads’ but it’s been real helpful as to what to expect and given me ideas as to what I need to ask. Amazing how you can read at 2am onwards. Nerves are definitely getting the better of me x will compare my treatment notes once I know...be grateful for any advice 💕xx
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Evening Carolyn

Do you know what dose of Everolimus you are going to be on? I was started on 10ng but changed 5mg after 3 months.

I was still working 31 hours when I started Everolimus. I had extreme fatigue on 10mg acne spots and itching skin everywhere. Once dose was changed all the side effects disappeared.

I really hope you do well on the treatment.

Linda

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Hi Carolyn,

 

Are these 2 'new' drugs to be taken in tablet form?

 

Sending you the very best of luck.....I've found the cancer journey to be very lonely & isolating. However, I now have a Macmillan befriender & it has helped me so very much.

 

What are your plans for over the Easter w/end? Are your new mets. hurting you daily?

 

Take extra special care....

 

silver.......no lining needed...he,he,he....hugggs

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 Carolyn it's never our fault! In a moment of madness post diagnosis hubby said "whatever you want is yours" lord alone knows what he was thinking as he knows only too well I don't forget anything !! he blames the beer but I've held him to it ever since! 😜 And just for the record I have 3 hoovers...  all Dysons though ... only one house so even I can't explain why 😂😜

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Lyndyloo

Yes Thursday is the day but I've read that the side effects are serious retail therapy and the need to spend money ! So not my fault !!

Hugs xxx
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Hello silver lining

It's loverly to see this thread alive and kicking again and wow 3 years secondary too. .
I've just done 2 and half years on letrozole and start exmestance and everolimus on Thursday this week after my ecg results and bloods ..very very nervous of new stuff as I've had it easy up to now but I've got my big girls pants ready ...cancelling social stuff for weekend incase I get side effects like grow a second head or turn lime green or something !! Ha ha.

Not easy to do all this on your own though but hope u have good support from others around .

Hugs xxxxx
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Hi Carolyn,

 

I thought I'd take u up on your offer of 'joining in'.

 

I'm one of those 3 years in from secondaries diagnosis.

 

Your comments on 'men' made me giggle. As I'm divorced, I do not have to worry about him anymore.

 

What sort of treatment will you be starting?

 

Best wishes,

 

silver...xx

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Hi Carolyn

Really pleased you have got cleaner sorted. Takes all the stress off you.

Yes we all need abit retail therapy. I love shopping for new clothes and shops. Not bought much over winter though.

Do you start new treatment this week?

Linda

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Isn't it lovely to see everybody back here posting more again ..nice to log on and see new postings so keep it coming ladies ..don't be shy ..we don't bite ...well only if we haven't got any chocolate stashed!
I think men on their own get more spoilt and pampered by family and neighbours whereas women just get expected to cope ..hence nursing homes !!
Just been out and done some retail therapy again ..bought a new vaccum cleaner for the cleaner when she starts ..I already have 3 that make a lot of noise but no suck !!! I've bought a Henry ..tried and tested and old fashion ..but hubby was mean and wouldn't let me buy a pink Hetty which I preferred so it's a blue Henry smiling at me now !!
Hugs xxx
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i hear what you're saying Lindy but in my mum's nursing home they are nearly all women. Maybe it's because we get so worn out we go running there for the luxury of not having to do all the housework any more.LOL

Ramade xx

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Re: Bone mets - please join in

Carolyn, You know I'm a pajama girl! I like working M-F mornings and finished by noon, but I miss my pajama mornings. When I worked in the afternoon I had lots of pajama mornings. Now I come home from work and put my jeans on til dinner time. After dinner if we aren't going out then I'm in my pajamas. Come summer I won't be as much. 

 

March is winding down ladies and I hope we get some warm days in April. I need to get outside! I hate the cold. FF

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Welcome back Carolyn, really sorry to hear about your progression but there are lots of treatments out there to help blast the little *uggers. Wishing you all the best with your treatment, missed you on the forum.
Love Helen xx
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Hi Carolyn

Just wanted to welcome you back to forum even though we have PM each other.

It is true when you decide to have a lazy day in pyjamas someone decides to call in. Same if house is abit untidy. I tend to all the housework myself including all the washing and ironing and food shopping. Typical of our generation even though I worked for 40 years. Younger people tend to share all the chores which is much fairer.

I have often said to children if anything happened to me hubby would have to go in nursing home.

Keep in touch.

Linda

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Absolutely Carolyn, standards must never be allowed to slip! Hair and full make up go great with pjs! 😉Xx 

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Am sure you looked fine Carolyn. Just your lovely selfxxx

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Hello ..thanks for all the support ..what lovely people you all are .
Why is it when you get up late in pj's, no make up and hair stood up like you've put your finger in an electric socket ...you get visitors ! Yep that's just happened to me ..I hate it as I always like my slap on early etc etc ..
Note to self: don't let it happen again. .standards must be kept !!

Hugs xxx
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Good morning ladies, Carolyn it’s so lovely how everyone has shown you so much love and support!
That is what I love about this forum, it doesn’t matter if you haven’t posted for months, all the lovely ladies jump on with caring words, advice and support.
Even though I have already PMend you I felt needed to join everyone with my support for you.
You are made of strong stuff and are going to kick these intruders into next week!!
Hugs Janette xx
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Barton it's no secret I like a G&T but I had no idea my iPad was keeping tabs on my habit too!! 🍸🍸😂😂

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I'm not the best with technology either but we all run when hubby asks for help. Jobey he is a carpenter too. Built our house.

 

Hello Barton, Ramade, Renee, and Red Riding hood! I've seen post from all of you but currently am falling asleep and can't remember what you said. I took 50 mg of benadryl. Good night! 

 

Carolyn we do time change here to but it was 2 weeks ago. 

 

FF

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Hello Carolyn. You know how brave I think you are, but isn't it wonderful how everyone has rallied around to perk you up and offer such amazing support and tips, etc? This Forum is so incredibly friendly and comforting.

 

I too have a cleaner - I couldn't manage any more with hoovering, etc. I also take my clean washing out to be ironed as I can't do it with my back. You will wish you had succumbed to a cleaner years ago! I found out the other day that my lady is 77! She is way fitter than I am!

 

 

Love and hugs. Barton.x

 

Ps Jobey - I laughed when I read that about your technology knowing your preference for gin!

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Mikes the same, hates technology! He's a self employed builder so has had to teach himself basics so he can raise quotes and invoices but it's very basic! He can build a house but a smart phone leaves him having a nervous break down , he says his hands are too big for all this touch screen rubbish! 💻🖐😂

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Oh no ..my hubs is completely anti technic ..doesn't use anything ..I dread him trying to record on sky box ..never gets it right! His mobile phone is a senior one with big buttons and a. ..torch for when he has a few pints and can't find the lock for his key when he gets home! ! Bless ..he's just made me a cuppa xxxx
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Maybe it autocorrected to something more risqué! 🤔 Hubby just bought a new laptop so will be plenty of **bleeping ** going on here later when he attempts to set it up! Thank god youngest son is home tonight , always knew there was a reason we had kids! 😂

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Yes Carolyn your spot on! And tubs full of old phone chargers and cables for god knows what! 

Good to know we all do it though 😜 Having Chinese tonight so will be making sure those tubs get chucked out 😂

 

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Don't know why I got bleeped. Only typed black plastic sack !!
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Hiya jobey
Bet you cleared out a load of washed out plastic boxes takeaway Chinese comes in ..I had mountains of them when I last cleared. .why? Then there's tupper ware type stuff with no lids etc etc !
Then the cupboard with kitchen gadgets we never use !!
**bleep** sack and off to the tip for you later xxx
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I'd come and do your cleaning Carolyn if I lived a bit closer!! I decided it would be a good idea to clear out some kitchen cupboards this morning , now half way through with a table full of junk I have no idea what to do with so I've walked away with a coffee and gone in to another room so I don't have to look at it for 10 mins! 🙈

 

My iPad auto corrects every word I type beginning with G to Gin 😂🍸 clearly I have a problem even my technology knows about 😜

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I have a phone number for a cleaner. .a lady that lives in the area and works for herself so will sort that out for next week !
Never thought it would come to this but it seems I'm not alone with struggling with cleaning.
I don't have a breast care nurse either ...

More rain here today ...surely we must be running out of rain /snow by now ...sunshine and vitamin D needed for us all but hey hoo ..clocks change tonight so nice light evenings again.

Hugs xxx
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I have a cleaning lady. She's a friend  She only comes for about 1 1/2 hours a week but but it keeps the crud at bay at ground level. . She has endometriosis. I feel I ought to be cleaning for her but she needs the money. She also milks cows and had done the milking before she came to me this week. I have lived a very easy life by comparison.

 

I dicovered I didn't have a breast care nurse any more this week. She must have left. Not that it makes much difference because they are over in the breast care unit and you never see them. There's never a nurse around at onc appointments. The best bet is talking to a nurse at the chemo unit when you go if they've got time.

 

Bon xxx

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I've just acquired a cleaning lady for the first time in my life, hubby has been wonderful but we have also been coping with my elderly parents and their house and it all got too much. One day last week the cleaner came for the first time, I was out, and when I got home the whole house was sparkling especially the kitchen floor. I'm the last person to care about housework but it was wonderful!

Wendy I don't know about other chemos in pill form but I'm on capecitabine and it's very doable, not at all like IV chemo. Definitely no hair loss, I was worried because mine is still only in the process of growing back after fec t, but the cape hasn't affected it at all.
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hi ladies, i thought i might tell you all what i have learned so far with this tenacious disease.

One, by putting money aside each week for a really good cleaning lady, i feel so much better seeing a lovely house and don't worry that,back on chemo again, i can't pic things up so easily. Also, as we all know and has been discussed, men don't see mess and dirt in the same way we do, so now i feel totally relaxed when he lets things spill down the kitchen cupboard fronts and don't have to say anything.

Two, now and then ask for an mri scan. My ct scans go along merrily saying no change then an mri done two weeks later shows up disease not seen by ct.

Three, if your hospital don't have breasr care nurses, go straight to your local hospice, show them how upset you are by total lack of support and they will probably be very kind and helpful.

love to all

from a bald again

ramade xxxx

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A cleaning lady would be wonderful. If I had one it would force me to keep my house cleaner to start with. I probably wouldn't let anything for her to do. My hubby can do a duvet cover, laundry and operate the sewing machine. He has patched his carpenter jeans before. Now when it comes to picking up and throwing junk away, he is impossible!!  But he Is excellent at TCL. He would have made a good nurse!

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Carolyn.......well, thank goodness you are back! The bone thread is really busy again! Well done! It has been a bit quiet of late. It is so good to see all the names and hear how you are getting on. There is so much sharing and support here. 

 

The days are getting longer. Best wishes to everyone!

 

mo

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Hello Wendy

I'm sorry you have worked your way through the hormones so quickly ..when I look back I have had it easy for over 2 years ..a little letrozole pill a day and a little jab with bone juice every 6 weeks so now I have to put my big girl pants on ..grow up and face the next stage ..
Oncologist says there are several chemos in pill form now so u should be ok with hair loss etc.
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Carolyn nice to have you back and wishing you well with your new treatment. I am 1yr in now and 2 treatments on hormone tablets not worked well so Onc said Chemo in some shape or form next option. Dreading Tues which is my scan results meeting but it is people like you and the other lovely ladies in here keep me going . Love to all Wendy
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Carolyn I don't know a man alive who can change a duvet cover, shut a drawer, hang a towel up .... the list is endless! Bloody brilliant idea to get yourself a cleaner, I'm sure you will have no resistance from hubby after the duvet episode! 😜Xx

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Well ladies

I'm looking for a school to teach hubby how to change a duvet cover !! For the first time in 45 years I had to ask for his help to put clean bedding and a duvet cover on ...well he turned into a 2 year old ..not a clue ..even how to match the poppers up. Didn't understand the logic of a square duvet in a square duvet cover even
Oh just thought .. I'll get a cleaner !!

Hugs xxxx
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Hello still here
How nice to hear from you ..I'm so glad your trial drugs are doing so well for you but surely if the trial stops ..they will let u keep taking the same drugs as you have been stable on them.
Hugs xx
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Hello rosie

I was supposed to see my oncologist 2 weeks ago for results but I had to cancel as I had a tummy bug and then wait 2 more weeks to see him as he was on holiday .

I do feel a bit miffed that this has all happened since November when I had a scan last. I would have thought on seeing these new things on scan I would have been seen earlier and then new treatment could have started quicker.
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Carolyn, it's lovely to hear from you again and I am so sorry that your results were concerning, as you say we sit in a comfort zone whilst a treatment is working and feel panicked when there is change.

 

I just wanted to say that we are here for you, I've even come back on the forum after weeks away! You have always been so supportive and uplifting to others so sit back and take strength from us for a while.

 

You have a raft of treatments still available to you and the chances are that they will work well, you are still a treatment "newbie" really so take heart.I am still squeezing the last few weeks out of my trial, nearly 2 years on and Cape lasted me 2 1/2 years as well.

 

FF, I know what you mean about feeling anxious the longer we work through these treatments, it's emotionally exhausting isn't it but glad that you are posting. Take care everyone, some warm weather would help....a lot.....

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Can I just ask why you had to wait 6 weeks for results ? X

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Rosie
That's very inspiring about your news with the e and e regime. ...oncologist said that the average success rate was about 8 months but of course everyone is different. ..he also said that he was surprised just letrozole had worked for so long on my extensive bone mets !! He was only expected about a year but it did two and half years for me.
Hugs xx
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Thank you all for your lovely comments and support ...think we all get in a comfort zone when we are stable for a while and then when it changes it's such a shock.
Hugs xxx