Bone mets - please join in

[Annmat]

Hi Arem,

I’m sorry you find yourself here but we are all learning from each other n getting a lot of encouragement here. Take care and remember 1 step at a time.

[JWD]

Hello Arem
Sorry that you find yourself on here but welcome..I'm sure you will find lots of friendly advice from the ladies on here. I'm sure there will be someone posting on here soon to help you.xxx

[Arem]

i am new diagnosed with metastatic breast cancer with bone mets. i am er positive her positive.

[feelthefear]

Hi silver.
I’m doing well really. Apart from the pains which are not too bad, the flushes which are awful and the fatigue. 🙄
I get my first scan since starting treatment next month so will see if the side effects have been worth it.
I’m usually a sun seeker but have to admit I’m relieved the weather has cooled down. I’m sleeping much better without the unbearable heat.
It’s great that you have a pain consultant. I really hope they can help you. 🤞

Take care. Xxx

[riversidedawn]

Hello Ames, sorry you find yourself here at such a young age with young children. I'm 51 with 13 and 16 year olds.

I was diagnosed with spinal mets in January and started on zoladex, letrazol and palbociclib. My onc put me on all three at the same time (plus zometa bone strengthener injections) which was tough as I didn't know which was causing the side effects.

The regime is working well for me so far, scans in March and June showed reduction and stability respectively. I've got my next scan at the end of October.

I don't come on here very often but it's a lovely group of supportive ladies. Wishing you well with your treatment. Xxx

[riversidedawn]

RIP moijan. I've not been on for a while either so shocked when I just logged on. X

[ramade]

ff, absolutely! no options should get thrown out of the window. Different things work for different people simply because everybody responds differently, if this wasn't the case a cure would have been found. it is a highly complicated and very individual disease, well done, stay strong, 

love and hugs

Ramade xx

[funnyface]

Ramade, Thanks for that info on tamoxifen. I have never taken tamoxifen and talked to my oncologist about it. That as after ibrance and letrozole but before E & E. She told me since I had used a double agent that a single agent wouldn't work. That tamoxifen wasn't an option. I will be telling her no options get thrown out the window until I try them and they fail! My original oncologist threw all hormonals out til I pushed for them. He told me they would never work for me bc lupron injections did nothing as my first treatment. I've been on hormonal for 3 years now.  If my oncologist won't try tamoxifen, I will go elsewhere. 

I'm glad it's working for you. How long have you been doing metastatic BC now? I'm tired too. This year has been my worse for tiredness! 

Take care, FF

[silverlining]

Hello feel the fear,

I don't pop in here that often....how are you keeping? I really enjoy the autumn and I'm busy doing my X'mas shopping for family and friends.

You could not be more right about oncologists and pain. They should learn to be more supportive. Bad pain is bad pain. I've found myself a really decent Pain consultant and we are tinkering with my ongoing analgesia...

take eXtra special care of u.....xx..hugggs

[ramade]

Hi ff so glad to hear you are doing well, we really appreciate our granchildren as we have this darn cancer. e/e i started same time as you but didn't work unfortunately so i then had another 6 months of chemo, horrendous and didn't change a thing with the cancer so now i'm on tamoxifen which seems to be working, been on it 2 months, it makes me feel exhausted but i will just carry on with it and thankful that it makes me  better. i just keep making too much estrogen maybe. Anyway love to you and hope your scan brings continued good results in November

hugs Ramade

[funnyface]

Ramada, I'm OK. I've been  on E & E for 17 months. I'm still working PT. I have scan and check up in Nov. I hope I'm able to stay on this treatment longer. It messes with my diabetes and this is the most tired I have been, but I'm enjoying my granddaughter. Nov. will be the my 13 year mark of mets! 

How have you been doing? You have been at this awhile now too. I forget what treatment you are on. Wishing you the best! FF

[feelthefear]

It’s been a while since I visited the bone mets thread but just want to say it’s heartbreaking to hear about moijan. 😢 another one taken too soon.

Silver, sorry to hear you’re having a tough time at the moment. I really hope things improve for you soon. It seems that some oncologists think that as long as we’re still breathing then pain shouldn’t really matter to us. Xxx

[silverlining]

hello sammycat......x

[rah2321]

one of my relative is just diagonesed with MBC , originally it was discovered in 2005 ER+ pr - her-, grade II, now in 2018 she has been diagnosed as per ct scan + pet scan

1) bone mets 

2) general haziness of omental & mesentric 

Currently the medication is letrozole + ibrance + monthly injection

intially on songraphy mild ascites was deducted,

3) is general haziness is a definately indication the mets is in omental region or is it early stage

i can see you are having it since last 4 years, as on net it says the progonis is poor, currently what options we have and can it be change to chronic disease

Regards,

[rah2321]

one of my relative is just diagonesed with MBC , originally it was discovered in 2005 ER+ pr - her-, grade II, now in 2018 she has been diagnosed as per ct scan + pet scan

1) bone mets 

2) general haziness of omental & mesentric 

Currently the medication is letrozole + ibrance + monthly injection

intially on songraphy mild ascites was deducted,

3) is general haziness is a definately indication the mets is in omental region or is it early stage

i can see you are having it since last 4 years, as on net it says the progonis is poor, currently what options we have and can it be change to chronic disease

Regards,

[ramade]

How are you doing these days ff, are you still working?

ramade xx

[funnyface]

I haven't been on much the last few days. Just saw all the posts about Moijan. Sending thoughts and prayers to her family and friends. May you have many memories. FF

[silverlining]

P.S.....& yes, I'm a glass 1/2 full type of gal and my sense of humour is my armour...xx

[silverlining]

Hello sammy/c & how do you do...,

Oh, its actually appalling..my pain left groin, under LH rib cage, upper back & lower back. I'm on 10mls morphine sulphate and 1200 mgs Gabapentin a day with a lil' relief but my pain man is overseeing futher increases in Gabapentin. I know 'that' look from my oncologist...I feel like saying walk just one day in 'my' shoes!!!....MRIs & PETs are expensive. so not used regularly.....its terrible to be in such pain in this day and age.....do KIT.....very gentle huggggs to you.....I'm seeing my G.P. on Wed......it just 'hurts'!!

[sammycat01]

HI Silverlining

I also have intense pain in back and chest. I find sitting torture!! I recently had the same scans as you and I was told at the moment everything is very stable!! If this is true why all the dreadful pain??? I just feel no one understands and my Onco looks at me as though it's all in my head. I'm so reluctant to go on morphine as it makes me feel so sick and weird. I just have 10 mgs of amytriptyline when I go to bed and then paracetemol in the day. Have you found any meds that actually work?  I am trying to work but feel I will have to go off sick again soon. What a dreadful thing this is!!! Sorry to sound so gloomy. I am actually a very happy positive person most of the time!!

[Hayeswen]

So saddened to hear the news and pass on my condolences to Mojan’s family. It brings it home when you lose someone who has been part of the gang but she will be remembered for her kindness and support x

[Lynnq]

So sorry to hear about Moijan.  We’ve ‘spoken’ a lot since March when we both started a course of chemo at the same time.  Can’t believe she’s gone, as others have said I did notice that she was very quiet. RIP.

[ramade]

feel so choked up to hear about Moijan, had missed her recently. She was a lovely friend and pm friend. i do hope and pray we can find a cure for this dreadful life robbing disease.

hugs to all of you dear people.

Ramade

[Stillhere]

I am another that is so saddened to hear of Moijan's passing. We shared the same hospital and she always gave good advice and was a friend to so many. Fly high lovely lady. Hugs to her family and friends xx

[silverlining]

Firstly hello  to all my friends on here,

I've been away for a while as a series of neverending appts.

I'm genuinely shocked and really saddened to hear of Moijan's passing....may i extend my sympathies and condolences to her husband, family & friends....xxx

I'm in a bit of a bother...I've had intense pains over 4 1/2 months so my oncologist ordered a CT chest, abdo., pelvis...NAD....so he spoke to me very verrry slowly as if i'm an idiot telling me i'm cancer-free 110%!! I feel so very ill & now I'm under a pain specialist....this is a tougher journey; than I'd imagined.

Owing to much slower healing after my tooth extraction, my oral biopsy will now be in early Nov.

Many thx for all your kind messages. I'm genuinely touched that u remembered me....

love & hugggs to all....

silver..xxoooo

[redridinghood]

Ames........welcome to the bones thread, if you know what I mean! Not anyone’s preferred destination. But keep coming.........you will find support and advice here. I have had bone mets for 4 years now and they are still stable. You are E+ve which is lucky. Also you can have the new palbociclib......also good. I have been on letrozole for 4 years. I now have a liver spot which is being investigated. If a secondary I will have ablation which should zap it! There are treatments out there, so don’t panic! You may have to be patient for now to let the letrozole work. There will be scans to monitor progress. But do return here. There are some very experienced ladies here who will share what they know and their own story. 

mo

[redridinghood]

Thank you for telling us about moijan, Helen. She will be missed on these forums. An absolute regular. Always full of support and advice. Fly high, moijan. I’m sure we’ll meet eventually!

mo

[helen44]

Rest in peace Moijan. I am saddened to hear the news of your passing. You were such a supportive lady to us on the forum and particularly to me on the Chemo buddy needed, anyone on eribulin thread. We were so close to meeting once but it was not to be. My thoughts are with your family & friends.
Helen x

[Waffles]

So sorry to hear about Moijan. She was a wonderful, kind person who reached out to others with her friendship and knowledge. I never got to meet her but was lucky enough to speak to het several times over the last few months. It's strange to think I'll never hear her voice again. My thoughts are with her family. I will miss her.
Love
Waffles xxx

[Suze57]

Carolyn, I have followed this thread and remember your wonderful help and advice. Although we never met I feel my life has been blessed knowing that there are people like yoursef who continually care about others. Thank you. Cyber hugs to you and your family. xxx

[Ames]

Hi all. I'm newly diagnosed primary with spinal mets and 2 'nodules' in my liver. I've had a round of FEC chemo but now it's confirmed ER positive the plan is zoladex and letrozole with palbociclib. I've had the zoladex a week ago but told need to wait another 3 weeks for it to work before starting the letrozole and palbociclib. Anyone else like me out there? Feel very alone. I'm 39 and have an 11 and 10 year old.

[nicky08]

What sad news about Moijan,  Although we never got to meet we had tried to sort out a time when we could have but didn’t live very close to each other. We often sent PMs to each other so I was worried when I hadn’t  had a reply to my last one. May she rest in peace and my thoughts are with her husband and family and friends, including you, Helen, Thank you for letting us know.

Nicky xx

[Jobey68]

So very sad to read this news, have missed her around the forum lately and was praying it was a reason other than this , my condolences to her family and friends.  Rest in peace dear lady ❤️

[Becca_BCC]

Hi everyone,

Just a note from Anna and I to say we're really sorry to hear about Moijan and we're thinking of everyone here who knew her, as well as her friends and family outside of the Forum.

Take care,

Becca at Breast Cancer Care.

[Sarahlew]

Sorry to hear the sad news about mojan thoughts with family and friends RIP xx

[tatyana]

So sad to hear about Moijan, she was a great support to many of us who never met her. Sending love to her family and friends.

[kirky_68]

Sorry to hear news about Moijan. Hugs to friends and family. Paula xx

[rosie53]

RIP Moijan, so sorry to hear this.
Thank you Helen for letting us know, please give my love and condolences to her husband and family.
Hugs Janette xxx

[bonariensis]

At peace now Moijan. I was lucky to meet you. Love to all your family and to you Helen. xx

[JWD]

RIP Moijan.. At peace.. sending love to all the family xxx

[HelenAquarius]

RIP Moijan

It is with great sadness I write to share with you that Moijan died on Wed 26th Sept. 

I spoke to her husband last night and he asked me to pass on the news. She passed peacefully at St Catherine’s Hospice, West Sussex & East Surrey.

Moijan became my friend a few years ago after we met through the forum and spent some happy afternoons in my garden and many times FaceTiming late at night. She was a lover of bell ringing and had many friends, but to the forum she built up a whole new collection of friends and was always trying to help all of us with our own difficulties, rarely asking for support herself. As a Community Champion she served us well, absolutely focussed on trying to help and suppport us and I’m sure she will be greatly missed by all.

I‘m sure you will join me in passing our sympathies to Paul, her family and friends.

...We often joked about who would go first, well, you beat me to it, Moijan, but I look forward to seeing you again sometime for some tea and sunshine xxx

(Also posted on the End of Life Forum)

[Annmat]

All the best and will think good thoughts and prayers.

[funnyface]

Hi everyone! 

Silver, Good luck with the biopsies. This cancer doesn't let any area alone!! FF

[tatyana]

Silver, good luck with the biopsy. Hope everyone is ok, I haven't been checking in very often but I still think about you guys. Had a long weekend in the campervan in Cambridgeshire, catching up with old friends and enjoying the fab sunshine. Chemo tomorrow. Oh well, at least my bloods made the grade this time!

[JWD]

Good luck with the biopsy silver.xxx

[bonariensis]

Good luck with your biopsy Silver. Will think about you. Don't worry about the thread, this forum changes its character all the time. Quite different from six months or a year ago. xx

[Anne30]

Hope biopsy goes well. I wouldn’t read anything into when people post. You never know what’s going on in people’s lives. They could be away having a holiday! Good luck with everything x

[Kate21]

Sorry to hear this Silver! It has been quiet on the thread, can only speak for myself, but I don’t tend to look every day, think it was just coincidence. When is your biopsy? Kxx

[silverlining]

Mine was the last post b4 the big quiet so I thought I'd killed off the thread.....maybe i'm just too sensitive....They found some lesioins in my mouth so its biopsy time ...again....xx

[tatyana]

Bon, that's good news, as it goes. If the current drugs aren't too tough, then it's good to get the maximum time out of them. But I can't help feeling how our perception of what counts as "good" news changes as time goes on 😉
Hope everyone is doing ok.xx