Hi FF, had my onc apt today, recent CT shows all is stable no change, so was glad to hear that. Do you get any side effects from exemestane? I get joint pains quite abit, onc said take painkillers, I have liquid morphine at home for serious bone pain when I was on chemo but dont like to rely on it. Inspiring to hear you are 13.5 years down the line since diagnosis, sorry to hear you broke your back must have been so painful. Our bones are so delicate now. Good luck with your scans in July. Do you work? I've just returned back since beg of May, just a few hours a day phased in period. It's enough atm as I get bone pain still and fatigue. Apparently takes a while to recover from chemo as I only finished end of March.
Hi Riversidedawn, sorry to hear you’ve had such a rough time of it, fingers crossed that your new treatment will kick the backside of the little uggers now!
hugs Janette xx
Hi Riverside Dawn
What a lot you've had to cope with and docs ignoring your symptoms as well. Hope eribulin works for you and you can get back on your horse soon
Hugs Bon xx
It's nice to come back and see some familiar names still going strong on here.
So far the Eribulin seems ok, just a red steroid face and very tired because I did too much over the weekend.
Riversidedawn, Wow what a troublesome update. You have been through the mill! I haven't had eribulin, so can't give you any pointers! Hoping it kicks the bsck out of those cancer cells. Hugs! FF
Hi, I haven't been on for a while. So sad to hear about Moijan and Carolyn.
I was diagnosed with bone mets in Dec17 and bobbed along ok on letrozole and palbociclib, some activity in one lesion so had cyberknife in November18. In January I started to suffer terrible ongoing tummy pain, vomiting and constipation. I saw 6 doctors including home visit, several GPs, oncologist and overnight in A&E and all said it was nothing to worry about.
After 4 weeks I had my quarterly MRI scan which revealed 7 tumours in my abdomen with some of them obstructing my small bowel. In mid Feb I had emergency ileostomy (removed 40cm of small intestine with attached tumours and have a stoma and external pouch), 2 weeks in hospital, lost 2.5 stone and started on paclitaxel mid March.
I've just had CT results following 2 cycles of taxol, unfortunately it hasn't worked and the remaining tumours have grown and spread to my liver.
I started Eribulin on Friday and will be scanned again after 2 cycles, approx 5 weeks.
There's not much online about Eribulin, I found the thread that Moijan started and have joined in with that.
It's reassuring to read Nicky08's uplifting post after 11 years with this damned disease.
Today I went back to pilates for the first time since January and that was a great feeling to be normal again. Hoping to build up my exercise over the next month and get back to horse riding as soon as possible.
I'm 2 months into applying for ill health retirement from work, I've been successful with PIP, ESA and have my parking blue badge.
Hope everyone is coping with all that you are dealing with at the moment. X
Hi Pea, thanks for your reply.
I am planning an early retirement at 55. When my first diagnosis in 2011, I went back to work 2 weeks after my last dose of Herceptin. I work in the IT dept in a bank and supporting banking systems overseas. UK is one of it. Busy life made me forget about the disease and started eating junk foods bacon, fries etc soon after 8-(.
I had my first Zometa last Tuesday. Being sick for 1 week. Finger crossed. side effect from Zometa vanished just 1 day before my onco appointment. Still not much input from my onco.
Me : last time you mentioned about I had skin cancer.....
Onco: No you did not have skin cancer. Sorry. (I stopped talking on this topic. Maybe he found out from the mammogram which was done 2 weeks ago. I had mastectony to the right side. In previous years, mammogram was only done to my good breast but this time the radiation lady told me my onco has requested to do it as well to my right side which has no breast tissue but only folded skin and bone. However, On the skin there are 3 marks from itchy scratches)
Me : ok. My prev onco mentioned she had no concern to my liver lesion...
onco : do you think it is cancer if shrink with chemo. I think so.
Me : Can I have an ablation for my liver lesion ?
Onco : no usually ablation is offered when there is only one in liver
Me: I read from the BC cancer agency website, max 3 ?
Onco : no. you have so many diseases. Somebody has it but usually for colon cancer spread to liver
me: what is the size of the liver lesion?
Onco: Your CT scan result has not been printed.
Onco: your tumor marker is low
Me : I had Zometic last week but I do not have the Letrozole prescription
Onco: sorry. I will arrange for it.
OMG. Can I trust him ?????
By the way, finger crossed, all the best result from your RT xxx MelMel
Channie, I have had my mets since Nov of 2005, 13 1/2 years. They are in my lungs and lymph nodes in chest. Bone scan says they are in my spine, MRI says no. Haven't ever had a PET. I did break my back, but MRI says it's osteoporosis. Dexa scan says I don't have osteoporosis. Yet, I have lost 2 inches in height. I think taking two drugs is a stronger defense. Never, really asked why. Have a good weekend. FF
Hi FF, thank you for your reply. I have been on a few treatments (and so have you!) as my bones were worsening so had to change. But scans in Feb showed the bones were "healing" so hoping this CT will be just as good. Though I still suffer from bony pain after a while of any walking/sitting/standing. I've not heard about combo treatments but I will ask onc next week. Are they better? Also good to hear you said over a long period of time... how long have you had SBC for? The prognosis averages are scary, but its reality... speak soon, Channie xx
Great news Janette bet you are so relieved. Just a thought could the Letrozole be causing your terrible headaches? Hope it gets sorted soon .
Welcome Channie! You have been through quite a few treatments. Fingers crossed that exemestane works longer for you. I'm on exemestane and everolimus combo. I have been on it 2 years. It might be failing. Going to scan in July and see what is going on. I have had lupron, abraxane/avastin, vinorelbine (navelbine), capecitebine, gemcitibine, palbociclib/letrozole and now E & E. It has been over a long period of time. Maybe you could ask about a combo treatment. I noticed you haven't had any combos. Best wishes! FF
Hi, I'm trying to join in and post and couldn't find the button. New to forum but diagnosed with SBC in 2016 Bone Mets only.
Primary in 2013, underwent lumpectomy, chemo and radio then was all clear for 2.5 years. Have been on treatment since 2016. Letrozole, zoladex, zometa, capcitibine, navelbine, recently taxol chemo, now on exemestane hormone tablet. Still recovering from the chemo which was really tough. Had CT this week to check progress, see onc next week. Just wondering if anyone else has been through all this and still sane!
Great news Rosie but terrible headaches no fun at all. Hope the docs can sort something out for you.
Hugs Bon xx
Hope all goes well tomorrow with the new treatment Avrelia,
will compare later in the week
Great news Jeanette! You have my sympathy if you’re getting headaches, I had them regularly until I’d gone through the menopause, hope they settle down soon, Kate x
Hi ladies, just got the results from my head MRI, and all is normal!!
So relieved, just need to tackle the reason why I keep having these terrible headaches now.
Bon, good luck with yours 🤞🏻
Hugs Janette xx
Glad you’re getting good support Bon but sorry to read about the problems with your eye and ribs. Will be thinking about you and hoping all’s well. Take care, Kate x
Am going for a scan of head, thorax and abdomen on Sunday at 10.00am. Pain below my ribs started yesterday. Need to know what's going on.
I don't know how I'd be coping if I didn't now have a breast care nurse and a palliative care nurse who works for a local charity. When I started on this journey things were pretty bleak and lonely.
Hugs to all
Hi to you, Nicky, I read your last post on here with interest because, after 3 years on my trial, my last CT scan also showed a shadow on my liver. Had a mini break in Amsterdam which delayed a further MRI by a week but showed a single small lesion. My lovely trial team have kept me on the trial for now but we go in this Friday to see if they can do RFA on it or whether I will come off the trial and onto chemo, possibly Eribulin as well!
I will be sad to leave the drug development unit at the Marsden after 3 years, the doctors and nurses could not be more efficient, positive and caring.
I might pick your brains about RFA as I think you've had it? but I'll wait to see what's next first. Enjoy your mini break and thank you for all your helpful posts.
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
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!
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
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 .
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.
Just want to wish you good luck with your MRI of your head. Got fingers crossed it turns out not to be serious.
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.
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.
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
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.
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
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
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 that:) Kisses and hugs to you and all and may all your treatments work long and effectively
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
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.
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,
The below section is particular for 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
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
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
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.
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?
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?
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.
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
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
In the very early stages but this research sounds promising!
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........
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.
I am so very sad to red this news. Please pass on our condolences to Carolyn's family.
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