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Bone mets - please join in

pea
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Re: Bone mets - please join in

Hi Lovemama,

Sorry it's taken me a while to reply to your message - I had an oncologist appointment last week and wanted to see what he said. They have put me on palbociclib and I started that today so fingers crossed I don't get too low white blood cell count and fatigue (they are the main side effects). I am managing ok on the anastrazole - the only side effects I get are achy joints in the night when I stiffen up. The denosumab is going well and as yet no side effects. They are going to book me in for a PET CT scan next month as it's too soon after my RT to have one. It'll be interesting to see if the RT had any effect on the lesion in my sternum. I hope you are getting on ok with Letrozole and you get the scan report via your GP. It's so easy to forget to ask things when you are in with the oncologists and my oncologist now knows I always bring my note book with my list of questions and we laugh about it at the end of every consultation. I say "It's time to get my list of questions out!". I work through them and tick them off!!! 

I'm thinking of you and hope you get some clearer information soon. I turn 48 in July and I am already planning a big celebration for my 50th in a couple of years.... have to have something to look forward to and aim for! 

Take care xxxx

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Good luck with you change in treatment Nicky

Your posts mean a lot to us all

Bon

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All the best, Nicky, with any changes to your treatment. You are always so well informed and I like the fact that you want to understand what’s happening!  Then you come here and share it all which gives us insight into this difficult disease. Just when we think things are steady it can all change! Don’t I know it! But your steady calm is very impressive. We will all look forward to your developments. It does sound as though eribulin should be a good way forward for you after the good reaction you had in the past. They will just have to monitor your WBC’s and help as needed. An occupational hazard! And I agree with you at how onc’s so often seem to expect us to make choices! 

 

So so far I am pretty ok on cape..........ridiculously peeling fingertips, bloody nose, but really quite ok. Scan in June. What a life!

 

All the best, Nicky. Keep us informed. Hope everyone else is coping and enjoying the lovely warm days.......at last!

 

mo

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Hi Nicky,

havent been on for a while, needed a little break. So sorry to hear Faslodex stopped working, did you get over 12 months on it? It’s such an easy treatment that I dread coming off it. Got scan coming up so we will see, Ive had 8 so far.

Hope your new treatment treats you kindly. 

Love Debs x

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Hi Nicky

Thank you for your reply.  I think you are at one of the best hospitals. On all the treatments I have been on I was just told this is your one. Nice that you are involved . I am keeping OK thank you for asking. I am still just on tamoxifen at the moment . Not had a scan now for 3 months. Back at oncologist 3 June so I hope they will arrange one then. Sup pose if you go back on a treatment you have already had you know what the side effects are going to be. 

Enjoy holiday . 

Linda 

Community Champion

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Hi Linda

Morning to you as well - although I think its just gone past 12!

I've had a small lesion (in the liver) which showed up as a shadow on a CT scan and a subsequent MRI then confirmed as a lesion.  There are also a few more dots that show up on the MRI but not the CT. I've been considering my options - don't you love it when the oncologists leave it up to you to decide!  I think I am most likely to go back onto Eribulin as I only had 8 cycles and it was still working when I stopped it.  The reason for the 8 only cycles was an oncologist at The Marsden, where I had gone for a 2nd opinion and to start a trial at the time, felt my bloods weren't up to being hammered by chemo for any longer than 8 cycles and that my bone marrow might be compromised.  This has proved not the case as my bloods have been fine and were for the duration I was on Eribulin other than wbc being low each cycle and I needed the GCSF injections to boost it.  I had expected that Fulvestrant wouldn't keep the little critters from making an unwelcome reappearance so I'm resigned to the fact I'm back on chemo soon, after OH and I have a quick holiday to Southern Spain!  However I did have 18 months of not having chemo which was a welcome change.  Until I see the oncologist in a week or so I won't actually know which chemo I'll be having and in the past everything has changed quite often for me especially when I've 'announced' what treatment I'll be having so watch this space!

Hope you are keeping well.

Nicky xx

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Morning Natalie 

Just want to wish you good luck with your MRI of your head. Got fingers crossed it turns out not to be serious. 

Linda 

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Morning Nicky

Sorry to read you are having to change treatment  as it suited you with few side effects? If you don't mind me asking have they told you what treatment you are changing to. Hopefully whatever you are put on has few effects and you are still able to some travelling. 

Take care

Linda

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Hi I am having a Breast MRI soon to determine if I have a similar issue with my sternum could you share with me any symptoms you have had with your sternum?

 

I too had BC in 2013 with lumpectomy, radiation and tamoxifen as treatment.  I didnt stay on the tamoxifen very long as it caused other terrible side effects for me.

 

Would love to hear about your symptoms and how you are doing.

 

Good luck and take care.

 

Amy

Community Champion

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Bon, Getting away and having some fun is what we all need. I would have chose seeing my son and grandson, too. I do hope they can get you in this week though and get you checked out. The sooner the better! Big hugs! FF

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Bon...........just to say thinking of you next week. Your double vision would be more worrying on its own I think. If the swollen eye is something local.........an infection perhaps.........that would interfere with vision. So I have my fingers crossed for you, but a head scan is an obvious precaution in our situation. Let us know how you get on. 

 

mo

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Morning everyone

I hadn't planned anything for months but went for a week to Cornwall last week, onc is giving me a break from cape and a scan to see if it's working, but scan not till the end of the month. Developed worrying symptom of a swollen eye and double vision. Onc wanted me to come home and have it checked out but I thought 'what's a couple more days' and I wanted to see my son and grandson. Hoping for a CT scan of my head this week.

Hugs to all

Bon xx

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Hi

friday can t come soon enough ,want to start fighting these liver mets ,have my imodium ready (possible diarrhoea side effects ) water bottle etc 

 

re a puppy ,our dog is 5 years old and the first few months were hard work ,wouldn't want to toilet train and puppy class if not feeling great ,but you might have lots of help ,i did ,and it was still hard

 

positive thoughts to all of us 

xxxxxxx

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Hi Potter I am starting on 17.05 too. Hopefully everything is going to work great for us. I am thinking about getting a dog but my husband is so stubborn. Well I told him that he will not kick me out hopefully when I get home one day with a little puppy and possibly will do it like thatSmiley Happy Kisses and hugs to you and all and may all your treatments work long and effectively

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Morning ladies, been reading recent posts but don’t really have any info/input on these treatments but want to say that I hope you have good responses with it.

Hi Nicky, I’m always drawn to your posts, you are always really informative on treatments and I sometimes feel I bury my head in the sand a little 😬 I’ve always seen you as someone who is really strong and positive but you get your scary moments just like the rest of us!! I have been stable on letrozole now for getting on for 4 years (bone mets) had a head MRI yesterday due to bad headaches so have now got “scanxiety” and am trying my best not to look on the internet about brain mets!! 

Good luck with your future scans/treatments 

hugs Janette xx

Community Champion

Re: Bone mets - please join in

Hi avrelia

I have been living with SBC for many years now, 11 and counting, which is why I suppose it might come across that a change of treatment is not that big a deal for me. Believe me it is! I have had many ups and downs over those 11 years and have learnt how my particular SBC reacts to treatments etc. It doesn’t make it any easier but I suppose it makes me more accepting of change. When I had my first progression in 2013 when liver mets were found (I’d had a couple of bone mets up until then) I had a complete meltdown and was very close to clinical depression. It was only realising the new treatment was working that helped me, but that took until the 1st scan results were known. So I fully understand everyone’s fears, it’s just I’ve probably adjusted over time, it doesn’t mean I don’t have sleepless nights though!

I do hope the new treatment works well for you and gives few side effects. In fact I realise in my last post I confused faslodex with being a chemo (when I mentioned how it might affect liver function tests) , I guess that was because I was talking about how Capecitabine had affected mine. To be honest I wasn’t aware that faslodex might do something to the liver, as it’s a hormonal treatment I hadn’t read anything up about that for when I was on it so I’m unaware how it might cause problems. I certainly tolerated very well and hope you do too.

Nicky x

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Re: Bone mets - please join in

Sorry Potter1, I am not replying your post. I don't know how to create a new post.

Hi ladies, I am receiving treatment in British Columbia, Canada. I found the below link, which was created and maintained by the provincial government,  is quite informative for cancer patient like me to more understand how the western countries' oncologists to work out each treatment plan for their patients,

http://www.bccancer.bc.ca/books/breast/management

The below section is particular for metastatic breast cancer.

http://www.bccancer.bc.ca/books/breast/management/metastatic-breast-cancer 

** my previous onco advised don't look at the average survival rate. The pool to calculate the average is by cancer type and not specific enough. like with or without treatment, condition when metastatic, etc etc***

PS. combo Fulvesrant + Abemaciclib is under trial or just yet approved in Canada but sure protocol not yet created. Shame

 

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Re: Bone mets - please join in

Good evening avrelia

i am so sorry to be having this discussion,but trying to be positive , 

i live in southend on sea ,essex ,but would have travelled anywhere to give this new treatment a try

 

like you i have so much to live for ,a fabulous family ,3 children ,4 grandchildren,lovely husband ,siblings .......,i am trying to be brave but if i think too much i just feel awful .

i find walking my lovely dog and being in the fresh air is my best medicine at the moment 

starting medication friday 17 th may ,will let you know how it goes 

 

trying to be positive ,positive thoughts to all of us 

xxxxxx

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Re: Bone mets - please join in

Hi Nicky yes I read it in the wrong way. I am relieved now. Hope the chemo is going to work for you. Thanks for the support I wish I was so brave like you, you are talking about it as if you are going to the dentist, perhaps this is the right approach....XXXX

Community Champion

Re: Bone mets - please join in

Hi avrelia

I actually wrote 'now' and not 'not' - if that makes sense. I thought I had made a typo but I've re-read my post.  Sorry if this confused you!  I mean that I will be starting chemo soon (I'm having a week or so before I do start) as Fulvestrant is no longer working as shown on a recent CT scan and then a follow up MRI which gave more detail.  It may be that the side effects are related to raised liver function results but a few of the chemos do that.  I always had several of the liver function tests slightly higher that the normal range when I was on Capecitabine but they came down again when I stopped taking it (again when it stopped being effective)

Good luck with the treatment, it is always a worrying time when we show some progression and have to take the leap into the unknown of a new treatment.

Nicky x

 

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Hi Nicky the other drug is in the shape of tablets and it does not mean that I will need to go to the hospital more often they will prescribe it for me and I will take it twice a day at home. It is so reassuring to see that there are people like you who have been through a lot and are still here. It is a bit consoling too to know that you tolerated the injections well, I was afraid about the side effects as one of them was destroying the liver as well, which is what I am afraid of.Thank you for your kind reply. Hope everything with you goes well. What do you mean that you are not going to be on Chemo, what will be the next line of treatment?

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Hi Potter so sorry that you have been through a lot, we have all been, so I know how you feel. I am an outpatient in London Saint Georges hospital in Tooting. They said that the tablets are a new medicine which has been before only a trial and it is only now when they started offering it as the government has decided that it can be on NHS as it is very expensive. I am still thinking what to do as I usually believe more in holistic medicine but I am so scared that I think I will have the treatment. I have so many questions which I could not discuss with my oncologist because I was all in tears and could hardly speak and think. First is a biopsy that dangerous? As she said in my case she is almost 100 percent sure it is cancer although it is just one spot in the CT scan. Unfortunately it is not on the surface of the liver so it will not be so easy to reach it, as it is rather in the middle. But on the other hand even if it is cancer how can we be sure that it has got the same receptors like the primary? What if it is hormone not dependent now and it had switched its receptors. What if it is a met of my endometrial cancer, not the breast one, will it make any difference? So many questions and so little time to decide. I am afraid that patients like us are rushed to make a decision out of fear to agree what they have been offered. But what is out other choice, take the risk and not have it? I am not sure I will be that brave.....So sorry that my post is like that and probably not easily understandable at times may be it will make you doubtful as well, but here I am....Do you live in London?

Community Champion

Re: Bone mets - please join in

Hi avrelia

Its good to hear from you again but sorry it’s in the circumstances. You have had so many things happening to you over the past year or so, without having to deal with another type of cancer, poor you. It must be a blow to then be told there might be a spot in your liver, I know I felt so bad when I was told my bone mets had gone to my liver back in 2013. However I have been on various treatments since then and they have responded well. I have just been on faslodex for the last 15 months (but couldn’t have the additional drug as it wasn’t available when I started) although I’m now due to start chemo again as it’s no longer working (an unfortunate reality with SBC ☹️). I found the faslodex very easy to cope with and the administration is once every 4 weeks so it was a very unintrusive regime. I don’t know anything about the additional drug (which I can’t spell!) so I’m not sure if that entails any more visits, blood tests etc but it should increase the effectiveness of the fulvestrant. It would be good for you to be able to share with potter1 who has also posted as it looks like you’ll both be on this new combo.

Hope all goes well for you both.

Nicky x

 

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Hi Sorry to hear your history I was diagnosed with oestrogen positive bc in nov 2017 , been on letrozole ,had chemo ,radio ,mastectomy and node clearance 

now have multiple liver mets and am about to start fulvestrant and abemaciclib next week 

so don t know much about the treatment but hoping it will halt progression of cancer 

where are you having these drugs? I am just starting at luton , not available at my local hospital yet as protocols are taking a while ,so changed to luton

good luck

xxxxx

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Hello you lovely people. I have not been here for quite a while so some of you may even not know me. I am 39 almost 40 this month and I have been diagnozed with BC in 2016 which had already secondaries in the bones. I have had 6 cycles of EC chemoterapy, have been on zometa and tamoxifen for a few months when bones showed a little progression so my ONC switched to letrozole and denosumab. In October 2017 I was dignozed with hrade 1 endometrium cancer an had total hysterectomy +ovaries removed. Since then I had been stable until now. A week ago I had a CT and a bone scan, bones continue being ok, but now my oncologis sees a tiny spot on my liver and she said she is almost 100percent sure it has disease in it. She wants me to start on Fulvestant and Abemeciclib. I was gutted. She said that if I want a biopsy to confirm it i can have one but as the spot is not on the surface of the liver but right in the middle she would not recommed as it may cause internal bleeding etc.

Has anyone been on such a treatment and what are your thoughts about my situation, what would you do. I know it will and has to be my decision but I am looking for some information and support. She said the medicine is quite new and good but what else she could say?.....Coming back here makes me very very sad seeing that Carolyn has passed away!!!!Words are not enough...RIP Carolyn

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Bumping up 

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https://coloradocancerblogs.org/colorado-drug-takes-aim-at-cancer-metastasis/

 

In the very early stages but this research sounds promising!

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Re: Bone mets - please join in

Hi Pea, how are you doing with Anastrozole.

Finally got a date for my first Letrozole which should be in next week. Bit of nervous. Not sure if I can cope with the side effects. I haven't changed my onco as no clue my next one will be better or worse.

Had a CT scan last Friday after 3 weeks waiting but the scan result is unexpected fast. The following Monday my onco told me my liver lesion improves. Wait, the lesion shrunk with chemo, does it mean it is cancer..........

onco: yes. it has disease

me: can I have something to get rid of it. Cyber knife, ablation....

onco: You are not qualfied. Max 4 spots but you have many

me: sternum, liver.... two

onco: the one in sternum rotted. abdomen, skin........   (the first time I heard skin)

me: are all those disappeared ??

onco : yes. they were shrunk to too tiny the CT scan can not pick up.  But they WERE there. You are not cured. Even 1 cancer cell can develop to big tumor. We will see further. You still have chemo

me: No. I am done with Taxol. I want MRI.....

onco: You still have hepceptin+Perjeta which is strong.  The liver lesion may shrink dramatically.

me : what is my life expectancy ?

onco opened the binder (my file) and wrapping up : Your previous onco team had no concern to the liver cyst...it is cyst....it was already there since 2011. In your file they said they have a patient similar to your situation live for more than 10 years and is still alive. you may live for 10 years, 20 years.

OMG. He has been in medical oncology field for 15+ years. Can he have his own thinking ?

I was in a shock and forgot to ask him to show me the scan result. I have a feeling the onco didn't show patients the scan result, one of the reason probably they themselves do not know if all spots are cancerous when there are 'many'.

ps. I already requested to copy the CT scan (not whole body, only from chest to pelvis) to my GP and hope I can get more clarification. Why spots which 'disappeared' and spots which are clarified as scar tissue could be counted. I just turned to 53 in March........

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So saddened to hear of Carolyn's passing. She was such a lovely, bubbly lady full of warmth and great humour. Rest in peace Carolyn, you will be missed. My thoughts are with your family and friends.

Helen x 

Community Manager

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I am so very sad to red this news.  Please pass on our condolences to Carolyn's family.

 

Best wishes
Anna
Digital Community Officer

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Thank you FF for passing on this most difficult  of messages. 

Like so many here, I found Carolyn's posts immensely  warm, funny and so reassuring, from the time I first got this secondary diagnosis nearly 2 years ago to recently. when she would talk about Capecitabine as her 'peachy pills'. Now always named that in tribute to her humour in the middle of tough times!

She will be so badly missed but we are fortunate to have benefited from her warmth and wisdom. 

With love and thoughts to her family at this so sad time

 

Maggie


@funnyface wrote:

I am at a loss  for words. I have received  a message from Carolyn's son that she passed on Thursday. That is all he said and asked that I let you ladies know. I left him know that she was loved and will be missed. FF


 

Agy
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This is so sad. RIP Carolyn.

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I am genuinely upset as Carolyn was so supportive and kept me going, along with some others  on this forum when I was first diagnosed . God bless Carolyn 

 

Wendy x

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Thank you ff for the news about dear Carolyn. So sad. She was such a supportive community champion, so welcoming to newbies. We got on so well online, often messaging each other in the middle of the night! A real friend. I hate this disease as it takes so many too soon. She so loved her little twins. I don’t know what to say now............I’ll miss you, Carolyn, but you earned your wings, so fly high. Always thinking of you, and thank you for being my friend,

 

mo

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So sad to hear we have lost Carolyn to this awful disease.  I did not met but exchanged lots of private messages. She was so such a supportive a very special lady. 

Thank you FF for letting us know. Pass on my condolences to her family. 

Linda 

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Thankyou ff for letting us know.i am so sad, This dreadful disease is so awful.

hugs to you and Carolyn's family.

Ramade xx

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I am so sad to read your message, FF but thank you for sharing. What a tragic loss, Carolyn was such a funny, positive lady taken far too soon. I will miss her hilarious chocolate addiction and her compassion as a community champion. Thinking of her family xxx

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Such sad news FF  All my love to her family, Carolyn will be greatly missed xx

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So sad to hear the news about Carolyn. She was a good friend to so many of us and I was lucky to meet up with her on several occasions. You can rest in peace and without pain now Carolyn. xx

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I am so sad to wake up to this, it genuinely brought a tear to my eye, Carolyn was a fantastic lady.

Nicky I also remember her saying about the chocolate teapot, always had a wicked sense of humour too.

FF, please send my love and condolences to her family, I know she was extremely proud of her 2 sons and grandchildren.

Another beautiful soul lost to this horrible disease, RIP Carolyn.

hugs Janette xxxx

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That is so sad. She was so so helpful to everyone. 

Community Champion

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What sad, sad news. Another lovely lady taken too soon by this horrible disease. Carolyn was such a positive member of our forum and will be so sadly missed, I’m sure, by us all. I will always remember her from her own definition of being as useful as a chocolate teapot - but she was so much more than that. Thinking of her family and friends at such a difficult time. Thank you FF for letting us know, hugs to you.

Nicky xx

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This is so sad, my thoughts are with her family. 

Love to all 

 

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I am at a loss  for words. I have received  a message from Carolyn's son that she passed on Thursday. That is all he said and asked that I let you ladies know. I left him know that she was loved and will be missed. FF

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Thank you ladies. 

Take care, hope you all have a nice weekend.

Janette xx

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Great news Janette! Long may the good scan results continue, Kxx

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Hi Janette 

Sorry I misunderstood yesterday regarding your scan results . I had been out for lunch with a few drinks I just wanted to send a reply to say how pleased I am for you. The oncologist you have is really on the ball which is very reassuring. 

Enjoy weekend . 

Linda 

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Hi Janette

I'm so pleased your results were good and after such a long wait. Blame the shortage of radiographers.

I get the impression tumour markers are less useful for bone mets than for other kinds.

Hugs to all 

Bon xx 

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Hi Linda, hahaha I wish I did get results that quick! I’ve waited 5 weeks for these results, it’s really not on is it.

That was my first MRI do this was a base scan for future MRIs, this has replaced the bone scan which they don’t tend to do anymore, having it repeated again in 3 months along with a CT.

Feel very relieved this evening as was convinced my time on letrozole was running out, she did say there are still a lot of options out there when this does happen though so that’s good to know.

Having a brain scan done too as I have been getting a lot of headaches lately, but I’ve been having problems with a clicking jaw and she thinks it could be down to that but wants to check it out just to be sure.

hugs Janette xx

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Evening Jannette 

So pleased your scans were OK and you are still stable. I can understand what you mean about tumour markers . Mine were always about 15 and they gradually started to rise and I was getting more bone pain so they did a bone scan that was way back in Jan 2014 unfortunately mine showed slight progression so treatment changed to EE. Mind that was the last bone scan I had. They say we should not get hung up on numbers I used to. Now I don't bother asking what they are. Really pleased for you now you can relax . Did you have the scans this morning and results this afternoon. Amazing I normally have to wait for a few weeks which is always a worry. Have a few drinks to celebrate. xxx