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Bone mets - please join in

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Re: Bone mets - please join in

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

 

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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
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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
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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
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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

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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

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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
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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

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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
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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 ❤️❤️❤️

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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
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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

 

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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

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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

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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
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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

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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

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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
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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
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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!

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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

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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
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Fab news Janette!

Love Helen x

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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
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Nicky
Hope you are ok ..I know you are struggling a bit as I read on the other thread ..hoping you settle with it soon and can jet off again on one of your adventures !
Hugs xxx
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Hello suze
Having no calcium might mean you will need adcal tablets ..they are really nice ..ask for lemon or tuitti fruity ones as they are a good help and easy to digest ..your oncologist will make a decision on denosumab but they do blood tests before them to make sure everything is tickity boo ....
Hope u feeling ok
Xxxx
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Welcome back FF, hoping you had a fab time away and a great anniversary celebration 🎉🍾, also that it has left you feeling rested and ready to face your new treatment.

Janette - great news, definitely a few vino collapso's neede this weekend 😊

Corey - great news from you too. Does this mean you are a stable Mabel as well or is it news that what a dr thought was SBC isn't? Sorry, if I haven't remembered, lots going on on this thread all the time!

Hi to all other mets ladies, hope you are coping with SEs and the treatments are doing their job.

Nicky x

 

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Hiya FF

Welcome back ..hope you had a good holibob and feel rested and ready to start your new regime !! you can pack the bikini and flip flops away again now !!
Hugs xxx

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Dear Corey,
This is wonderful and a great hope for us. Pray you stay clear of cancer forever.
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Hi FF, we've missed you. Hope you had a good break. B xx

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Hi everyone! I'm home descending tired! Trying to catch up!

 

Welcome Suze and Wendy! You have joined a great bunch here! Hope it is helpful to chat!

 

Janette, Fantastic Stable Mable!! Toot toot!!

 

Corey, That is amazing!! Long may it last!! 

 

FF

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Yay Janette so pleased for you!! xxx

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I'm not o. Denosumab but I think I might end up on it once I've had scan results. I was told yesterday that my leg pain is because of a slipped disc in the area where one of the Mets is and there's no calcium in my blood. The cancer wouldn't have been found without the slipped disc. 

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Thank you to all my cyber buddies for all your lovely posts/comments. I feel like a kiddy teenager this evening, think there might be a few cheeky glasses of wine on the cards this weekend!

Hi, SUZe57, bone juice is our slang for denosumab.
Hugs Janette xxx
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Hello Janette, more wonderful news! You are amazing. Congratulations.

 

Hugs. Barton.x

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Good news Janette, I'm pleased you are another stable Mabel B xx

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Oh Corey, that is such wonderful news! Wow! I am so pleased for you! It really cheers me up to read good news.

 

Hugs and best wishes (you can relax for 6 months now). Barton.x

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Hi Corey. That's great news, I'm so pleased for you. Enjoy the summer (tho I know you work hard). How's the young donkey? B xx

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More good news - fabulous! Well done Janette (Natalie1) Stable Mabel. What is bone juice? x

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Hiya Jeanette
I have been checking in for your news ...such a relief for you now.....soooooo enjoy your weekend and relax.
Loads of hugs from your letrozole buddy
Xxxx👍👍👍
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Hi, "Stable Mabel" checking in! 😆😆 CT stable and markers nicely sat at 19. Onc has agreed to change my bone juice to 6 weekly because of increased aches and pains since being changed to 8 weekly.
Hugs Janette xxx
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Wow! That's fantastic news Corey. You must be over the moon. Shows its worth the side effects. So pleased for you x
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Not until 4!!!!! 😨😨
Jeanette xxx
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Jeanette
What time do u get your scan results today ?
Always horrid hanging around .
Hugs xxx
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That is just fantastic news Corey! So pleased for you.
Hugs Janette xxx
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Corey
What super dooper news and we are all over the moon ..you can relax now and enjoy the lovely summer on the farm with Jamal .

I think I must add that no snail's were harmed in this incident and he's still posing around the garden ...very green but a happy chappy! !
Hugs xxxxxx