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