Bone mets - please join in

[JulieD]

Hi Ladybird,

We haven't haf a man on the threads regularly since Wayne several years back, who like you, was finding info for his wife. Welcome! There are also sections here for relatives and friends and the phone line can be used by you too so if you want any support for yourself (it is hard for partners, we know) then do please use the support here.

Carolyne I  still wear Crocs  but boring black ones at the mo, so handy just to slip them on when popping into the garden or onto the balcony, so light. I wear flat shoes when I  go out, but have never really been a heels lady, wore those 4 inch wedges when I was a teen though!

I'm so glad you both managed to get to Ellies celebration and that it was such a lovely fitting tribute to her.

Moijan, good to see you posting, you've been a little quiet lately and was about to PM  you to see how you are doing.

Have a good weekend all xx

[Carolyn52]

Hello moijan
Yes we met Ellie often as we all live within spitting distance of each other here.
If I lived nearer to marirose would like to attend her funeral too but its not possible to travel that far.
Xxxxx

[Moijan]

Well done Carolyn and Barton,

Ellie was a lovely lady, tho we never met. Glad you could go, as you met her regularly didnt you?

Moijanxx

[Carolyn52]

FF
I think you have got a bit confused ..it was Ellies celebration of life we went to ..not a funeral !! Ha ha
Carolyn xxx

[funnyface]

Carolyn and Barton, I'm glad you both could attend Marirose's funeral. She was too young! FF

[Carolyn52]

Hiya ladybird
Hello and welcome ..we are always pleased for everyone joining us. There is some lovely threads to be read here for information and support ..excuse anything from me though as I'm as much help as a chocolate teapot for sensible advice ....I drive everyone mad with my rubbish but there is so many kind helpful ladies that can answer any queries you might like to ask
Carolyn xxx

[Ladybird]

Reading the posts on here has been very informative..my wife doesn't do forums but I can share the information with her.
Hope this is ok.

[Ladybird]

Hello everyone!
My wife was diagnosed with bone bc about two years ago.

[Carolyn52]

Hiya Jeanette

No comments though from you about the crocs !! Maybe all wear pink ones with stripey snoopy socks or something !!!
Ha ha ...
Carolyn xxx

[rosie53]

Aww that's lovely Carolyn, glad you could be there on behalf of "met ladies" to pay respects.
Hugs J xx

[Carolyn52]

I think we all should rejoin the " crocs club" again with our footwear ..for those that don't know what they were ..they were coloured rubber clogs that my hubby always said looked like lumps of Lego on my feet but oh boy were they safe and comfy !!!
Carolyn xxx

[Carolyn52]

Well ladies ..Barton and I have just been to a celebration of Ellies (EJ81) life at a local hotel.
What a beautiful tribute of poems and words from friends and family to a 35 year old that packed more into a short life than most of us could ever have done.
RIP Ellie.
Carolyn and Barton xxxx

[rosie53]

Hahaha yes Carolyn, I know the penguin walk very well! 🐧🐧
Hugs J xxx

[funnyface]

Sensible flat shoes here! Anything with even a small heel puts too much pressure on my already screaming knees! I even had to get Mary Janes bc my toes don't want to work right to hold other shoes on. I want my clogs back!! 

Falling is scarey! I always feel I'm going to be broken or split somethin open and need stitches! Thankful you are OK, Bonariensis! FF

[Carolyn52]

Hiya Jeanette
All of us bone metsers do the constipated penguin walk thing on wet pavements don't we and ice and snow is a definite no no.
Xxxx🐧🐧

[rosie53]

Hi B, so glad you didn't break anything when you had a fall and your okay, I also live in fear of falling and breaking one of those bones of mine! I remember a few years ago whilst in the canaries I passed out in the heat and the first thing that was on my mind when I came round was omg I've surely broken something but like you I was still perfectly in tact apart from a bloody chin!
Hugs Janette xx

[Carolyn52]

Ha ha moijan but noticed my purple sparkly killer heels were missing ..bet Bonariesis was prancing around the village in them !! Hence the fall ..
Carolyn xx

[Moijan]

Ladies...

I am absolutely with you...live in fear of a fractured femur( broke my wrist xmas 2015)

Just as a cheerful aside...have any of you ever had dizzyness when bending down or looking up?

that happened to me on Tuesday, bent down/ forward to look at a small chip in the paint of my recently bought new(er) car...stood up and if it wasnt for grabbing my wing mirror...would have fallen flat on my back!  Had a mddle ear infection about 5 years ago and ever since have had to be careful not to turn my head sharply!

anyway..I managed to drive home feelng absolutly fine and later realised it may be due to another( oh joy) blasted wee infection! Looked it up...can cause that...so am hoping the keflex will cure the b*****r.

am glad you are ok tho Bon. Were you wearing some cast off killer heels from Carolyn?

love, Moijanxx

[Carolyn52]

Sorry Nicky ..I didn't c the film but yep wedges do fit the bill !! I haven't gone into special footwear quite yet but wear fit flops in summer and ugg type boots in winter ..in my world ....sensible !!
Carolyn xxxx

[Barton]

Oh crikey, Bonariensis! I bet that was a fright! I live in fear of falling over since diagnosed with bone mets, and having compression fractures in 2015. I am so glad you are OK, but please take things easy for a while - shock, etc, can come out later.

Hugs. Barton.x

[nicky08]

I hope the bruising isn't too bad but no broken bones so that's a good thing.

I know what you mean about the sensible shoes Carolyn. Did you watch the Ab Fab movie? There was a scene where Eddie's mother, June Whitfield, was with her (elderly) chums and Eddie and Patsy commented on them all wearing wedges! The most comfortable strappy things invented for sore feet! However I'm about 30 years younger than June Whitfield so that's not so good. 👠

Nicky x

[Carolyn52]

Hello B
I'm so glad that u r ok and that the only thing that got damaged was your ego ...it's so embarrassing isn't it ?
Before I got this bone cancer lark ..I used to wear killer heels all the time but now wear as my mum would have said sensible rubber soles !!
Hopefully make up will cover your bruises and u will be ok today.
Carolyn xxxx

[bonariensis]

Denosumab has turned me into the iron lady. Yesterday I was out putting up posters for the village panto when I fell over (or as it's called when you reach my age, 'Had a Fall'). As my chin hit the tarmac I thought 'Goodbye denosumab' but no, everything seems to be OK apart from bruises and scrapes. There may be a few questions today about the state of my face. The panto is called 'Beans' and is on the 27th and 28th at Blackawton Village Hall.

Love to all particularly those waiting for results. B xxx

[Maldives]

Hi mavis like you ive been watching trying to pluck up the courage to write something. Ive had bone mets since i was diognosed in 2014. What did you want to know. Take reassurance that there are a lot if drugs out there to keep this disease at a slow pace. Its nice to know others out there understand how your feeling. Keep positive and strong mavis. This looks to be a very nice group of ladies. Sue

[stresshead]

FF, brilliant news.

I do try to follow this tghread regularly but its sometimes so bsy i lose track so apologies to anyone i could have responded to and havent. Best wishes to all, especially those witing for scans/results. x

[Carolyn52]

Hello FF
I did wander about posting marirose passing here on this thread but she was so well loved I wanted to get to as many regulars as possible as its a busy place with lots of readers .
Anyway ..marirose would be wanting us to pull on our big girl pants and carry on with life etc.
Carolyn xxxxx

[funnyface]

Thanks ladies! It was very hard to post about being happy, when we are all so upset over Marirose! I decided she would want me to be happy and post. We carry their torches with us!

Nicky, I don't know about you but I hate having to adjust and find the new normal! Why can't we just be normal! Whatever normal is!

[mattspm]

Hello there!
I already posted it elsewhere, but I also had immunotherapy at Hallwang, now more than two years ago. I had breast cancer and i am Male. That is very rare but just as bad. I have been in complete renission for 2 years now, so I can only speak highly about their treatments, they are indivual and unique for every patient.They performed a tumor-associated antigen test and Next Generation Sequencing on my tumor tissue in order to find the best targeted treatment for me, as these tests show genetic modifications or expression of certain surface markers found on cells. So, in your case a totally different expression pattern could show up, which means there is a different medication or vaccine for you. That is what I like about their approach-it is not one drug for all, but really individual-based. 

I also Love that they Know what they do and keep up with research. The doctors there have a profound research background and knows their stuff. I have been to clinics that offer you some Kind of vaccine or so-called immunotherapy without understanding the rationale behind it. I also recommend getting Information from Hallwang Facebook site, they are actually the only clinic i Know that posts real scientific data from ongoing trials and not some opinions or weird data of unkown origin.

So I can only recommend the clinic to you!

[Barton]

Hello Nicky, sorry to hear you are so tired on Kadcyla - I hope you can "get used to it" like you did on Cape. I know nothing to do with chemo is easy, but, as long as we don't have severe se's, we all tend to accept the little things as the new normal - I hope it gets to that stage for you but is still effective.

Good luck to all who are having tests, results, se's, and just generally struggling with things.

Hugs to all. Barton.x

[Barton]

Wow, ff, that is excellent news! One less thing for you to worry about. Brilliant!

Hugs. Barton.x

[Stillhere]

Just wanted to say "so happy for you FF!" Free treatment for a year must be such a relief, long may it continue to be effective for you.

Nicky, I'm thinking about you and everyone having new scans and treatments, wishing you strength and positivity.

Carolyn, it's so hard when a good friend on here passes away, it makes me feel sad and I'm not a regular poster like you. I'm in awe of all the community champions giving so much of their emotional strength to supporting people on the forum, it can't be easy and you do a fantastic job xxx

[Carolyn52]

Hello ladies
Well first of all FF ..what wonderful news for you but gosh what stress it caused you.
Nicky ..I hope you are feeling better too with kadcyla ...probably settle down with time when your body adjusts ...you know you had years of h and p in the system and then a new one so your body is confused!!
I'm afraid I got very upset over loosing marirose ..she had always been there and replying to us ..but went hospital yesterday for bone juice, lots of waiting around and chatting to other ladies who were really strong and positive with their dx .so I have given myself a kick up the rear end and back to real world again.
Met my new oncologist who looks about 12 but suppose we all think like that as we get older !!
Carolyn xx

[nicky08]

Hey FF, that's brilliant news. I've been following your tale about all the forms and how much strain financially and mentally this is for you - but not having the energy to reply! What a relief especially as it's been so effective for you - long may it continue.

Thanks Janette, Helen and FF for your kind words. I must admit it has surprised me how cr*p I feel! I chat to another lady on the chemo ward who has been having this for well over a year so had expected to feel just like she does - a bit tired for a day or two then up we get again! I'm hoping it might be a bit like starting on Capecitabine all those years ago when I felt rotten the first few cycles and then tolerated it very well- other than the usual hand/feet soreness. I live in hope!

Nicky x

ps Good luck with the MRI Helen, all very confusing - I know what you mean. I'm having another liver biopsy done next week to see if the little critters have changed sides again! Not looking forward to it but it will give a more up to date picture of what's going on - the last one being in 2013. See you later this month x

[rosie53]

Oh FF, that's fantastic news! Really pleased for you.

Hi Nicky, hope the kadcyla s/e get easier for you, I know my friend had been on it for 6 years now and copes quite well but she has said the fatigue is the the worst.
Well no snow here yet.....hope we don't get any!
Hugs Janette xxx

[funnyface]

Hi Girls, A bit of good news! I was approved by the manufacturer of penicillin (ibrance) to get my drug free for one year! They said first they will give my name to a company to see if they can find a grant for my copay. If that isn't found then Pfizer will assist me! They said either way I will pay nothing and its good til the end of the year! I don't know what  would happen if some how it is still working at the end of the year r! Will deal with that next year if I need to! FF

[funnyface]

Helen44, Hoping all goes well and you can have the surgery!! 

Nicky, feel better soon!

[helen44]

Very sad to hear the news of Marirose, another lovely lady taken too early. Xx

Hi Nicky,
Sorry to read your post about the Kadcyla side effects, hope things improve soon for you. Facing an MRI on Friday to see if liver met is suitable for surgical removal -I am very confused at the moment and anxious that Kadcyla isn't working for me. Will keep you updated, hope to see you later this month xx

Thinking of all you lovely ladies and wish I could wave a magic wand over us all and make this b******d disease disappear xx

[nicky08]

What an awful shock to hear about Marirose. Like many of us I had no idea she was so ill. My thoughts are with her family and friends at this sad time. Thank you Carolyn for letting us know.

I have been a bit more absent of late as I struggle with the after effects of my Kadcyla treatment. Having naively imagined it not to be as debilitating as many chemo's I have been absolutely washed out by it this time around, sleeping for about two days! Very unlike me who can't even fall asleep in a chair! Hopefully things will improve as they did for the last cycle and I can be more active on here.

Nicky x

[Stillhere]

Also shocked and saddened to read the post about Marirose....she was one of those amazing ladies that gave so much advice and support whilst making very light of her own health. Fly high dear Marirose, you will be sadly missed. Condolences to her family and friends xx 

[funnyface]

Wow, I didn't know Marirose was that I'll! Quite shocked! She was a kind lady always helping everyone. RIP...Hugs and love FF

[Marie123]

I am so sad to read the sad news of Marirose. She was so kind to me and often PM when she knew I wasn't well. This kind , caring , funny lady will be very much missed . Oh Marirose , we never met , but I feel we jad become good friends. My thoughts are with her family  . M xxxxxx

[rosie53]

Julie, like you I hadn't realised Marirose had become so ill, a real shocker to hear this sad news!
Hugs Janette xx

[JulieD]

On no!! I didn't realise Marirose had become so ill. She was a lovely, warm, caring woman and will be greatly missed. I'm very sad to hear of her passing

[redridinghood]

Well, a real shock.

Marirose was such a support to everyone, across the threads. In tears of course. But she has her well deserved wings now. I'll miss you, Marirose. Fly high.

mo           (((((((((((((xxxxxxxxx))))))))))

[rosie53]

Thanks for letting us know Carolyn.
That is so sad to read RIP Marirose, my thoughts are with her family.
Hugs Janette xx

[Carolyn52]

Hello ladies
Just in case you haven't read the message from Bonita ..our lovely community champion Marirose passed away this morning .
She was so kind and supportive to a lot of us here ..we will really miss her .
Rip ..lovely marirose.
Xxxxx

[Barton]

Hello Lesley, so glad you have the all-clear! It's great reading news like that! And don't worry, cry if you need to - I can understand how the relief can be overwhelming!

This site is what keeps many of us going - we all appreciate all the support and uplifting stories, and even the shared tears.

I do hope you never need this section of the Forum again, but if you do, know that we are here for you (and anyone else).

Hugs. Barton.x

[Sandra59]

Hi Carolyn

I too have very difficult veins, even before cancer I was thrown out of blood donors for being too slow! When recently admitted to hospital they ended up doing a femoral stab to get blood out of me, that was after they had used my arm as a pincushion.  The technician who attempted to put a canula in my hand for the CT scan recomended not eating any carbs for two days before and then on the day eating lots of carbs to plump up the veins.  I had never heard this before and haven't yet tried it but it may be worth having a go.

Sandra x

[JulieD]

Hi Fudgepot,

Just a quick one to hopefully continue to give you hope and positivity.

I  was dx with bone mets nearly 11 years after primary. They are quite extensive : ribs, spine, sacrum ....My Onc gave me a zap of radiotherapy because one tumour was very close to spinal canal and also a zap for pain. Then I  went on to Letrozole (Femera). I  did question my Onc and ask for second opinion as I  felt it wasn't aggressive enough treatment. They confirmed my Oncs choice was good for me and I  have been on bonejuice and letrozole and am stable with no significant spread over six years on. So you can see hormones can be very effective. We have several members who have lived for many years with bone mets. Dawn is one of our lovely ladies and has been living with SBC for around 14 years.

There is a term for those with just one met but can't remember it at the mo. However, it does appear that often if you have only one or two mets it often stays that way.