Bone mets - please join in

[PMOL]

Hi girls! Had the first denosumab monday and so far so good, although I do have some aches and pains but thanks to you all I know that I was to expect this.  

Today had the appointment letters for ct, bone scans and onc appointment... trying not to think too much about it but  you all know the scanxiety starts kicking in...

anyway, enjoy the sun and cleaning (trying to do a bit at a time) but up to date with the washing and ironing!!! Back working 6hs to trying to keep this up beat.  Going away for half term and can't wait! It will be super exciting as the girls dont know where we are going 😀😀❤️

[Suze57]

Been out with ladies from school tonight. Been struggling to eat on scanxiety diet but stuffed with pizza and ice cream now and not a thought to c all night. Think I might sleep better tonight. Could do with one of you ladies to clean my house. Still struggling with the wonky leg. X

[Carolyn52]

FF
That all sounds a nightmare for you ..especially if u get a "off" day ..phew.
Hubs and I spent 4 hours just doing lounge, pulling out furniture and cleaning behind etc etc.
I am a huge lover of dogs but both my son's have mucky ones ..black lab ..that sheds mountains of hair and boxer that snots, dribbles ..even found snot on curtains and lampshades !! Every time he shakes his head ..it's like he's pebble dashing the room with dribble !!
Hope u are coping with e and e ...always scary but maybe yr knees will be better.
Hugs xx

[funnyface]

Cleaning and gardening spree across the pond too! Dogs allergres kickerd in big time. Hair comes out in clumps. She has to get a bath every other day with special shampoo. I bath her, put her out on deck. Then I wash the bathroom rugs and her towels. Clean the bathroom, wash her dog bed and vacuum house. Then I shampoo carpets in LR and our bedroom. I keep all other doors closed so she can't get in. This is exhausring! FF

[Carolyn52]

Hiya
Like you Jeanette ..I'm having a washing/ spring clean session this week....been doggy sitting on and off over two weeks and as much as I love sons dogs ..they are mucky creatures ..it's a wander they arnt bald with the hair I found behind furniture etc !!
Achy this morning so will pop a paracetamal so I can finish my cleaning ..onwards and upwards as they say !!
Hugs everyone xxxx

[rosie53]

Hi Moijan, yes that makes lots of sense to me. I had hardly any s/e with tamoxifen but now on letrozole and I get most of them! 😡 down to hot sweats, achey bones, stiff joints, constantly tired and feel 100 year old most of the time......BUT they are my "best friend" because they are kicking the backside out of the nasty little blitters at the moment, so yes s/e can be rubbish but they can be a small price to pay to stay "stable Mabel" and compared to some of the nasty s/e you can get with some of the chemo treatment mine are nothing!
Beautiful morning here in sunny Manchester, washer going 😆
Hope everyone is keeping well.
Hugs Janette xxx

[Moijan]

Hi Ladies,

as I seem to be having progression and feel like being honest...today, if you are oestrogen positive and respond to say, Letrozole, then later on the bc is resistant, then it might mean, possibly, that it has mutated and found a new fuel/driver.....if that happens then its quite likely that re visiting it may not work...as in my case......

..if you think about say antibiotics and bugs, if you stop the antibiotic, too early, then the bugs get resistant.....and that antibiotic wont be any use for that bug anymore...

I have been on three drugs, now, where they were doing just fine, until i had a break....then the bc got resistant to them and no longer useful.........all these wretched drugs have side effects, some worse than others......so I personally would rather suffer a little more pain and try to counteract it with painkillers, than give up a drug which is working!

but...I know its not easy, love and hugs...Moijanxx

[Carolyn52]

Great news crissy
Relax and enjoy.
Welcome back Jenny ..hope u stay with us this time ..always good support and kindness from real people.
Xxxxx

[jenny29]

Hi eeveryone, it's been a while since Ive posted, so just saying hello.

[nicky08]

Hi crissy

great news from your scan, that it hasn't spread elsewhere, and I hope this has given you a lift and you are not feeling quite so low. Obviously you are still being treated with tamoxifen and denosumab for bone mets so any anxiety hasn't magically gone away but with any luck you will learn to adjust to your treatment and be able to get on with living, as we all have managed to do with a SBC diagnosis. We are here for support so do keep coming back with any questions or help you might leave, I think many of us find it a good place to sound off and know it's not affecting our loved ones who are also under stress.

Good luck with the tablets, they can keep the little critters at bay for many years, as Janette has already said, I had nearly 5 years stability from anastrozole when my mets were diagnosed in 2008 and, you're right, there are plenty of other tricks available to fool the nasty C cells!

Nicky x

[Srilata03]

Dear Crissy,

Great news. You can relax now
Srilata

[funnyface]

Great news Chrissy! Hoping you can unwind some now! The stress of this cancer is worse than the cancer!!

[Suze57]

Glad you had good news Crissy. I know lots of people who have remained stable on tablets. You should get a good nights sleep now. X

[Barton]

That is good news, Crissy! Long,may it continue, and may your cancer be as thick as you wish!

Hugs. Barton.x

[rosie53]

Great news crissy, hope you can relax a little now, just keep faith in the tamoxifen, it's surprising just how powerful these little pills can be and can keep the little blitters at bay!......enjoy the sunshine!
Hugs Janette xx

[crissy]

Hi All, just to let you know how today went.

After having another sleepless night and geting up with an upset stomach I got to my appointment looking a total wreck. 

The news that nothing was showing in my organs, except for a thickening in my stomach wall which could be precancerous and they will keep an eye on it, was somewhat of a relief.

I have to carry on with Tomoxifen and the 4weekly injection of Denosumab until such time that these stop working and the clever cancer gets immune, I so hope my cancer is as thick as S***.

Then as you know, they try something else, ??? 

It certainly help having this site and reading all you journeys and knowing that there are lots of lovely people out there going thru the sameish. 

Love, hugs and kisses to you all, xxxxx

[didi62]

Hi Suze yes I couldn't get my full prescription for letrozole on Saturday at Boots.she said manufacturing problems but she couldn't order me a different brand either(I have accord) so not sure what is going on.didi 

[bonariensis]

Hi Chrissy

Good luck with your results today. At least you will know what you are up against and hopefully will have a treatment plan which you can focus on. We will all be holding your hand today.

I was 68 when I was diagnosed with sbc in pelvis and skull. My breast care nurse could see I was a total wreck and got me referred to the Macmillan psychologist at our hospital. It wasn't a magic bullet but it was a relief to talk to someone who knew about these things. Maybe there's someone like that you could talk to. I'm 70 now and still stable so don't despair, read other people's stories and they will give you hope.

A big hug today B xx

[Srilata03]

Hi Crissy,

It is really difficult coping with the initial shock. But afterwards you learn to accept. This forum is a great comfort to know you are not alone in this journey. Helps a lot to share your anxieties . Antidepressant can help but only for a short time
When they don't work doctors keep increasing the doses and there is no end to it
Love and hugs to you and i am sure you will feel calm with time
srilata

[funnyface]

Hi Chrissy, I agree with the others a, hold off on the antidepressants if you can. I think too, once you get results and a plan you will cope better! Chat, rant and scream with us, it might help! FF

[Suze57]

Oh, meant to ask. Has anyone had problems getting Letrozole. Went to Boots tonight and they said they couldn't get it and to try Tesco. 

[Suze57]

Good luck tomorrow Crissy. Xxx

Jeanette, could it be stress? My scalp sometimes gets dry for no apparent reason. I tend to only use simple shampoo now. 

Night, God bless everyone 

[Carolyn52]

Hiya Jeanette
Have you had highlights done recently and may be started an infection ? Mine's itchy but not infected .have u changed your shampoo ? Could u have nits ? Ha ha .
Otherwise ...can't offer any help really?
Gorgeous weather today here ..really hot and yes done two loads of washing again ...
Hugs xxxxx

[Downbutnotout]

Crissy - just a quick note to wish you all the best with tomorrow's scan results. Will be thinking of you.

X

[rosie53]

Evening ladies, quick question, I posted just over a week ago about problems I had with my scalp. It's been dry and itchy for a good while now and about 2 weeks ago it got infected and I was given antibiotics which cleared it up nicely.....3 days after completing the course and back at the doctor's again today with it infected again! This time she gave me a 2 week course and also took a swab of it to send away.
I'm convinced it's to do with my treatment/dx as before all this i never had any problems at all! I questioned it with my onc last week and she dismissed that theory! Just wondering if anyone else has had similar problems since starting treatment?
Hugs Janette xxxx

[PMOL]

Hi girls - so injection was on my arm and was painless 😅A bit of discomfort afterwards but the same as any injection.

Crissy I'm sorry you had to join us (and all the new ones, sorry but too many names to remember and my memory is pants at the best of times!!!) Agree with the rest, try to find something that will take your mind off for the next couple of days... my children 10/11 have managed to do that as they still need feeding and help with school.  And I don't thjink it gets "better"... once you have the treatment you fall into some sort of normalcy but it will hit you at the most unexpected times and my best advice is to just cry your eyes out, scream (if it helps and doesnt scare the neigbours 😉) and accept all he hugs and cups of tea friends and family are willing to give!  Xxxxx❤️ 

[rosie53]

Hi Crissy, welcome to the forum, we all understand your worries and fear. Oncology appts NEVER get any easier unfortunately, you just learn to cope a little better. Please feel free to ask any questions /concerns there is always someone who can help.
As for the antidepressants, for the moment I would hold back, it's early days and you are still taking it all in.......however, if in the coming weeks /months you feel you are still struggling then please take your GPs advice on antidepressants, there is always a stigma about this kind of treatment but believe me there are lots of people who take them (I work in a pharmacy) and they can be a very good treatment long or short term depending on the individual.
Hugs Janette xxx

[Hayeswen]

Sorry meant to add but you might find talking to someone helpful as suggested by Barton.

[Hayeswen]

Hi Crissy

I am newly diagnosed straight in at secondaries and can't explain to anyone who hasn't got what we have what goes on in my head. I was offered counselling and it did not help me . I was also offered and declined antidepressants because I want to be able to cope and carry on as normal as I can. I did accept sleeping tablets to begin with but I would only take them before a result to try to get a good night's sleep. Believe me 3 months in I am still struggling but getting there and find this forum more help than taking a tablet. Chin up Wendy

[Barton]

Hello Crissy, sorry you have had to join us, but welcome. As has already been said, we are a friendly bunch. As Carolyn has said, and I agree, I would advise against antidepressants. I haven't had them myself, but I do know they are very addictive. However, and I mean this, if this is what you NEED temporarily, take your doctors advice (they are supposed to know best, after all!). Alternatively, this website has a helpline which you can ring if you get distressed, or just want some impartial advice.

I know you don't believe us at the moment, but once you have some kind of plan in place, it does get easier to cope with.

Hugs and best wishes. Please keep in touch. Barton.x

[Carolyn52]

Oh crissy
Life's hard isn't it ...personally speaking I wouldn't go antidepressants route if you can manage without as they can become quite addictive but the waiting is the worst bit so we understand how you feel ....been there and got the tee shirt !!
Try to focus on something else if you can and the wait will soon be over ...it becomes part of life ..scananxiety and mammogram results !!
Feel free to post here and let off steam !
Hugs xxx

[Suze57]

Been weeing for England after drinking gallons of water for MRI! Back to work tomorrow - only 12 more get ups to half term. Not much chance of size 10 with all the chocolate, bacon butties and pizza in our 'healthy school' xx

[Carolyn52]

Oh suze
Follow the scananxiety diet and u will soon fit into your size 10 bodycom dress no probs for the wedding !! OR
Do what I did yesterday ..buy a large bag of grapes and pig out ..I've been weeing for England today !!! Oops
Hugs xxx

[Suze57]

Welcome Crissy. I'm a newbie as well and waiting for results. You've done the right thing joining this group as they (we) are very supportive. 

Carolyn, you made me laugh out loud. Going to a wedding in three weeks and the scananxiety diet will help me into my dress. Thanks for cheering me up. Xx

[crissy]

Hi all, I am new to this site and thought as you all have gone thru the mill I would like to join you.

I am 68 and had breast cancer in 2013, had a lumpectomy and lymph node were all taken from under my right arm, all infected with cancer, so no suprise when I complained about pain in my hip they found bone cancer in my scull and in several areas down my spine, this was 4 weeks ago.

My Onc took me off Anastrozole and put me on Tomoxifen and a 4 weekly injection of Denosumab. I had a scan 2 weeks ago to see if it had spread to any of my organs, I get the results tomorrow and at the moment my stomach is doing cartwheels.

For the last 4 weeks I have gone from anger to despair. My emotions have been all over the place. I know I have to get on with this but it is so hard , as you all know.

My GP suggested I go on antidepressants but I don't want to go down that road if I can help it, Do they work?

My best wishes to you all xxxxx

[Carolyn52]

Hiya suze
Best suggestion would have been to hit that lady in waiting room with a big rubber hammer for scaremongering !!
Rise above it ..enjoy some treats and some retail therapy and try to relax whilst waiting for your results .
The "scananxiety diet" works well and involves lots of loo visits but hey hoo ...the waistband on your skinny jeans will feel so much better !!
Hugs xxxxx

[Suze57]

Good afternoon ladies, 

Been for CT and John took for nice breakfast after. Will get results two weeks tomorrow. Feeling ok and being positive but woman sat next to me in waiting room and fed me with horror stories about lungs and pancreas and its took hold in my brain. Booked a facial to take mind off - any other suggestions? Carolyn, you're right about clothes and make up. They cover up all the marks. I had zolodex for four years. Tummy like a colander, but it's worth it especially on lovely days like these. Ill try to keep away from 'drains' from now on. X

[Carolyn52]

Oh yes ..most of us look normal with our make up and clothes on but underneath it all we are all full of "war wounds"from our bc and treatments ...scars, needle holes etc etc but hey hoo we are still here !!
Xxxxx

[PMOL]

Hi Carolyn! Thanks! Not scared about the injection but my belly will end up looking like a colander as I'm on zoladex too 😂 But to be honest, think I prefer the injectiopn option rather than have three or more tries to find my vein! 😣  Anyway, thanks for the advise and hopefully I won't have any spasms... xxxx ❤️❤️❤️

[Carolyn52]

Hello pmol
I have only ever had denosumab so can't compare but its an easy jab in tummy and painless.
I would say 99% of the ladies here have no problems with it. I get a bit more aches for a few days and had teeth probs but I don't think connected to it.
It's the way forward now to avoid more iv infusions on very overworked veins !!
Hugs xxxc

[PMOL]

Hi girls! So glad Ff had a lovely time but so not nice about your husband 😔 Hope he's better soon.

anyway, have a quick question to try to calm my anxieties... how have people found the change from zometa to denosumab? Onc decided to change it as it is extremely hard to find my veins for the IV.  When I had the first zometa had muscle spasm and worried that it would happen again witht the change of medication... plus my first CT scan is coming up too... think I'm a bit of a mess 😢 Xxxxx

[bonariensis]

Hi Funnyface

So glad you had a good break and found out just how much your friends love you both. It sounds a great place to visit. My hubby fell over last weekend, still not looking very pretty. He blames the generosity of his friends. Hope your new medication will be OK B xx

[funnyface]

Janette, I can't blame my chocolate cravings on letrozole! I've always had them. I just try not to buy it! 

Nicky, I couldn't resist "chocolate"!!!  Glad you enjoyed your week long break! When I was on infusions I always enjoyed that break. When I was on vinorelbine I got it 3 weeks on 1 off and then I read of others getting it every other week. I asked if I could do that and onc said yes! He increase the weekly dose and I got the same amount in two infusions that I got in 3! It was a big break going twice a month. In Dec I would ask if I could have a week off and he said yes because I was stable. That one week off would mean 4 weeks off when I was on the every other week plan. Vinorelbine  worked for 5 years. I was devastated when it failed. I hated to change the plan!! I'm glad you are able to get away! Any up coming plans? FF

[rosie53]

Hi Nicky, nice to hear from you. Glad your doing okay with the chemo, hope everything goes okay with bloods etc next week so you can get on with your next cycle.
Hugs Janette xxx

[Pippin]

Hi Wendy

Wasn't too bad when I had the radiotherapy. Then overdid it on housewrk. Couldn't walk at all. All v painful. Had a pelvic fracture. Slowly improving but taking months.

Pippin

[nicky08]

Sounds like a fantastic time FF but sorry to hear about hubby and his fall. Hope he recovers from his aches and pains soon. It's always lovely to be your water isn't it? Especially when you don't live near it normally. Weather has been very chilly in the south for a week but I've been out planting up our new raised beds so we're hoping for better weather so we can sit out and enjoy the flowers. I know what you mean about being outside, being trapped indoors is t much fun - there's always too many jobs staring at you! Good luck with bloods next week and starting the new treatment. By the way was there any chocolate in the cake? I think you forgot to mention it 🍫🍫🍫 😉

Carolyn, thanks for thinking of me. I'm feeling fine and have had my week off chemo (eribulin for those that don't  know) which has been great - no hospitals, no blood tests, no bloomin doctors - just 'me' time 😊 Back for second cycle next week, as long as my bloods are OK. And, yes, we will be off for a short break soon, we have one planned but have to make sure the chemo takes place on time with no delays. OH and I have learnt over the years to make plans but to realise they might change which takes the pressure off me but still gives us something to look forward to. We always book hotels that can be cancelled at the last minute and also have learnt that by using avios points for flights we can cancel those at the last minute as well. Sometimes we have had to cancel but other times we know we have it all planned should everything be OK near the date and suddenly we're ready to go!

Hi to all other mets ladies, enjoy your wekekends.

Nicky x

[rosie53]

Awww FF, looks like you had a wonderful time, what lovely friends you have.
Omg my mouth was watering reading about that chocolate cake! Carolyn and I are real chocolate heads......I blame it on the letrozole s/e 😀
Hope hubby's injuries soon heal, dog's so lovely and faithful but can be such hard work can't they!
Carolyn, our weather has been quite nice for a good week now (although really windy!!), no heating needed!
Hope you enjoy the weekend.
Hugs Janette xxx

[Carolyn52]

Hiya FF
So glad u had a good holibob but sorry about you poor hubby ..dogs are a real nuisance . We have sons boxer for six days ( he's gone to.los vegas) and he just gets in the way all the time ..I'm always having to climb over him or around him or coax him oit of my chair with a treat !!
Wow that chocolate desert sounds awesome and I feel the need for a Rennie tablet ..thinking about it !!
I think the cold snap has hit us here in the UK too ..I have the heating on here now ....no doubt you are back on lettuce leaves again for your diet too ....but its so good you have had a nice time .. ..something very therapeutic about the sound of the sea .
Hugs xxx

[funnyface]

The picture was taken while I was sitting on the couch looking out! You see the mahogany deck, then you step down one step onto a grey deck that goes to the railing. Then the water!

[funnyface]