Community Champion
Posts: 1,246
Registered: ‎24-11-2014

Re: Bone mets - please join in

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
Community Champion
Posts: 1,246
Registered: ‎24-11-2014

Re: Bone mets - please join in

RIP moijan. I've not been on for a while either so shocked when I just logged on. X
Member
Posts: 234
Registered: ‎30-03-2017

Re: Bone mets - please join in

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

Community Champion
Posts: 4,324
Registered: ‎01-05-2012

Re: Bone mets - please join in

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

Member
Posts: 156
Registered: ‎19-11-2015

Re: Bone mets - please join in

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

Member
Posts: 234
Registered: ‎30-03-2017

Re: Bone mets - please join in

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

Community Champion
Posts: 4,324
Registered: ‎01-05-2012

Re: Bone mets - please join in

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

Member
Posts: 543
Registered: ‎15-04-2017

Re: Bone mets - please join in

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
Member
Posts: 156
Registered: ‎19-11-2015

Re: Bone mets - please join in

hello sammycat......x

Member
Posts: 3
Registered: ‎10-10-2018

Bone mets - please join in

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,

Member
Posts: 3
Registered: ‎10-10-2018

Re: Bone mets - please join in

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,

Member
Posts: 234
Registered: ‎30-03-2017

Re: Bone mets - please join in

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

ramade xx

Community Champion
Posts: 4,324
Registered: ‎01-05-2012

Re: Bone mets - please join in

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

Member
Posts: 156
Registered: ‎19-11-2015

Re: Bone mets - please join in

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

Member
Posts: 156
Registered: ‎19-11-2015

Re: Bone mets - please join in

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'!!

Member
Posts: 29
Registered: ‎15-12-2013

Re: Bone mets - please join in

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!!

Member
Posts: 68
Registered: ‎01-04-2017

Re: Bone mets - please join in

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
Member
Posts: 624
Registered: ‎10-10-2012

Re: Bone mets - please join in

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.

 

 

Member
Posts: 234
Registered: ‎30-03-2017

Re: Bone mets - please join in

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

Member
Posts: 358
Registered: ‎26-07-2014

Re: Bone mets - please join in

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