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Bone mets - please join in

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Re: Bone mets - please join in

Hello everyone

I was diagnosed with bone mets almost 6 years ago just 7 weeks after my primary diagnosis.  Also had shadows in my peritoneum .  I went onto Letrozole and Zometa which kept me stable for about 5 years then my TMs started to increase - scans showed more obvious infiltration in the peritoneum but my last scan also showed some differences in my lower back and the Onc told me that he suspected infiltration in my bone marrow.

I was put on cape and have just started my third cycle and my blood results have been very encouraging.  I didn’t ask much about the bone marrow suspicions and am wondering if anyone here has any experience of this....or can point me to a site that has some information.

 

I am finding that I have lower back pain and am wondering if that is the cause.  Have an appt with my GP next week to ask about pain killers.

 

xx

 

 

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Re: Bone mets - please join in

Mrs timps, sorry you've had to join us but you will find this forum amazing. i can only tell you that when my scans are looked at and there is any progression at all my treatment is changed. Do you have a sympathetic gp or a breast nurse you can talk to?

big hugs

Ramade

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Re: Bone mets - please join in

Mrstimps, Some drs are more aggressive than others. They also go by how you feel. My oncologist will go and look at the scans herself if she isn't sure. If you aren't comfortable with this maybe a second opinion would be good. FF

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Re: Bone mets - please join in

Hi Ladies,
Myself and my mom read the forum alot, shes not confident on posting so i said i would for her. She has mets in her lungs and bones, been on letrozole for the last 2.5 years and her latest scan has shown some progression. What we cant get out heads round is her consultant isnt changing her treatment yet and scanning her again in 3 months. Has anyone else experienced this? We aren’t sure wether to push for another opinion or trust that the docs know what they are doing, any advice appreciated x
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Hi Linda so pleased for you that is great news. last time we talked we had both started on e/e,didn't work for me but glad you had a fair time with it. i imagine taxol is chemo, i recognise the name as a heavy 6 month dose years ago after my primary.Hope things keep going in the right direction for you.

love and hugs

Ramade x

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Yeyy fantastic news Linda!
Hugs Janette xx
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Brilliant news Linda, so pleased for you.
Bon x
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That's great news Linda! Very excited for you. Go celebrate! FF

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Following a meeting wth the surgeon yesterday, it now seems that she would definitely like to do surgery in the New Year! Am currently gettng herceptin injections which are working very well, but she doesn't want to leave me undefended should I need to stop the herceptin for any reason. Surgeon and oncologist seem to have different opinions Smiley Frustrated

JWD
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Re: Bone mets - please join in

Great news Linda.🤗🤗
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Wonderful news Linda. It makes the harsh SEs we have to put up with whilst on chemo all the more worth it doesn’t it? Thanks for sharing.

Nicky xx

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Re: Bone mets - please join in

Hi everyone

Just thought I would post on the bone mets to let you know all know. Hospital rang yesterday regarding CT scan results. Liver tumour disappeared and bone is showing improvements. I am currently on weekly taxol. I have had 9 I down to havec12 in total.

I have not put much on here for a while with me being liver and bone mets now. Liver since last October.

Hope everyone is doing OK.

Linda

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Thanks Nicky. That's very useful and also reassuring. From a 6cm tumour it has shrunk to where it's barely detectable so the chemo and subsequent herceptin seem to be working extremely well. Have to speak to the surgeon today who will likely give me the same answer. Its been great to read so many positive posts on here!
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Hi Leigh

It is a lot to take in right now but we seem to learn and adjust along the way. In my own experience and after reading the experiences of many ladies on here over the years surgery is not given very often.

The reasoning behind this seems to be if you have a major operation, such as breast surgery, your immune system can be compromised which in turn can compromise your metastases. Most oncologists also like to have a reasonably time of stability, after initial treatment, to see how your particular BC, and SBC, reacts. If it is more aggressive they might not want to rock the boat so to speak. Their main aim is to prevent the mets spreading any further for as long as possible. By having chemo which will have been targeted to your type of BC it will have treated you systemically. Your original BC lump should have reacted to it as well. Also, from something that an oncologist said to me once, they can monitor the lump easier than bone mets etc which involve far more intrusive scans. My bone mets were found after a routine mammogram some 4-5 years after my primary. I had a local recurrence and was due a mastectomy but once the one mets were found it was straight into chemo nd then hormone treatments nd no surgery. I did ask over the years if I could have a biopsy or surgery and they said that on every CT scan I’d had there was no evidence of disease in the breast so it would have been pointless to have gone through surgery to have found nothing. By the way that was over 10 years ago and I’m still here! Over the years there’s been a lot of debate on this but there definitely doesn’t seem to be any pattern as to survival rates between those who didn’t have surgery for their primary (when they were diagnosed with secondaries at a similar time) to those that did, and very few (on the forum) have had the primary removed

Hope this helps or gives you some questions you may want to ask your oncologist.

Nicky x

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Re: Bone mets - please join in

Hi LeighL
I'm sorry you are having to join us. You're not stupid, there's such a lot to take in and you continue on a steep learning curve.
I don't have any experience of the question you are asking but if no-one else can help you I would talk to the BBC nurses who should be able to
Hugs Bon x
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Hi all, this is my first post so this is all new to me. Haven't read through all the posts and am a bit worried about sounding stupid! I was diagnosed in February and early on my oncologist had suspicions of a boney met in my sternum.  All along surgery had been discussed following initial chemotherapy.  However following chemotherapy there seems to be a turnaround where my onc. and the surgeon are both now thinking no surgery. Scans don't show any other secondaries bar the localised bone met. Any one else been in a similar situation and are wondering if it is best to get rid of the primary in the breast? Tks x

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Good luck Bon, thinking of you today and thanks for the info you've put on line, interesting.

ramade x

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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
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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
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Re: Bone mets - please join in

i am new diagnosed with metastatic breast cancer with bone mets. i am er positive her positive.
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Re: Bone mets - please join in

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

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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

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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

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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

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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

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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
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hello sammycat......x

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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,

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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

Re: Bone mets - please join in

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

ramade xx

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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

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

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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'!!

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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!!

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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
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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.

 

 

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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

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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

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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

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Re: Bone mets - please join in

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

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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

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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
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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
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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

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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.
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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

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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 ❤️