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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

nicky08
Community Champion

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

Dear Crissy,

Great news. You can relax now
Srilata
funnyface
Member

Re: Bone mets - please join in

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

Suze57
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

 

Hugs. Barton.x

rosie53
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

X

rosie53
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

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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
Member

Re: Bone mets - please join in

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
Community Champion

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

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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
Member

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funnyface
Member

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Hello all we had a lovely time. We arrived at our friends place and were quite surprised. Here several of our friends got together and chipped in to surprise us. They had been planning it for a month. There was roses, cake with a bride and groom topper, and a booklet of events in 1982! There was balloons and Happy Anniversary banners, along with gift cards for sticky buns at the local bakery, another gift card to a sandwich shop we like and $250 in mad money! We didn't expect any of this! It was very hot and humid on Friday and Saturday. It got cooler each day. Sunday we were able to have my best friend and his wife over. Monday on our anniversary we went out for a late breakfast  and then a nice dinner. Dinner was excellent, but we ended up at a chain steak house that we could have went to at home. I was disappointed that it wasn't a little nicer of a place but it is off season at the shore and most of the finer restaurants were closed on Monday! Carolyn dessert was excellent and was this layered chocolate yummy with chocolate mousse, chocolate cake, chocolate crumb base, a chocolate fudge like filling, chocolate icing with chocolate curls on it, and vanilla ice cream with a chocolate drizzle all over ice cream and cake thing. I thought of you with every bite! When we got back to the house things went down hill! Ross took our dog out, Maggie crossed over in front if him he took a quick step not to step on her and hit uneven payment and went down. He has road rash on both knees, down his legs, top of one foot and big toe, and his elbow. He said he jarred himself so heard that he though t he collapsed lung at first. His back and ribs still hurt. Last night was the first he could lay down and sleep. He has been sleeping sitting up on the couch! He refused to go to the hospital, but now admits he is sure he should have. I said well you can still go! He refuses! He says, no need to that he is slowly getting better! Luckily at our friends place she is on the bay side on a channel. You walk right out her door onto the deck and the water is rght there. You can sit in the living room and see the water, so we just sat and enjoyed the water front, and played games! Important part we were together! It was very relaxing! Came home and WOW did the rest of the leaves pop out! I really wanted to spend the weekend working outside! It is pouring and we are in a cold snap!! Going to be below freezing at night!! I'm bummed because I really wanted to work on some outside things before I start the new meds. Outside is my happy place! FF

Hayeswen
Member

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Hi I take chewable Ad cal twice daily and have 'bone juice' injection every 4 weeks although my insurance company, who I work for, will not continue to pay for this after my next one as they state it is a prevention rather than a cure and is not covered anyway that's another story but My Onc said there is a tablet alternative?

Congrats to all you who have had good results this week.

I am off to see the breast surgeon this pm for my Post op check up and dreading he will tell me something I am not expecting also getting anxious about my radiotherapy to my hip from the end of March as still have the pain but told it could take a couple of months to feel better. Would be interested to hear anyone else's experience of radio.

Have a good weekend all and here's to a sunny one. We did have some sun here earlier

Wendy
helen44
Member

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Fab news Janette!

Love Helen x

Ladybird
Member

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Well done Jeanette.. Letrozole rules!
Ladybird has Denosumab every three months (injection at the house). We are assured her leg pain is down to trapped nerves. Keep stable!
X