Hi Nicky. No problem. I have been reading up about eribulin. I will mention it on Friday when I am at the hospital. Do tell me, after,living with such a long time with mets , you since 2008 and me since 2009 do you get that dread that time is running out. I so want to be here for my grandchildren. I know I have been blessed to have these years but at 68 I want more! My mum lived till she was 80 and I want some of that. Xx
I realise my reply was a bit worrying for you if you go onto eribulin. I have a friend with secondaries who has been on it a couple of cycles more than me and hasn't used the cold cap and although her hair thinned it's nowhere near as bad as mine - I just got unlucky as its not a chemo that states that you will definitely lose your hair. It is well tolerated and I have found it no worse than Capecitabine which I was on for for about 18 months back in 2013. But good luck with the current treament and hope it keeps working and your bloods don't get too hammered.
Dear Bibi44 and Nicky 08. Thank you for your replies. I feel a bit better about the Paclitaxol now but will certainly mention the Eribulin.
good luck if you do go onto Palbo Nicky. It has now been too bad, just mild fatigue plus of course the hair thinning. At least it saves on having to sit there having IV chemo which is a real bonus. Good luck to everyone changing treatment at the moment. Xx
I don't have any experience of pacitaxel, although have done its 'sister' chemo docetaxel, but that is a bit harsher I think. I have also been told my bone marrow could be getting compromised, maybe its because of the number of chemos etc that you and I must have gone through (I'm over 9 years with bone mets, the last 4 with liver mets as well). I don't have any words of wisdom but in some cases a hormonal can be re visited (or at least I've seen it happen on this forum) so maybe it's not all chemo from here on in. I'm due to come off eribulin soon, because of the bone marrow possibility (it hasnt actually been compromised yet but there's a feeling that it might) and go onto fulvestrant and possibly Palbociclib so it doesnt sound like its going to be any easier on the body and bloods in particular from what you've said. Eribulin is another chemo that might be suggested? It is a lot easier on the body than some and it does seem to be giving good results even if, like you and me, we've had several different treatments already over the years. I cope with it Ok but do need the gcsf injections on 3 days of the cycle and have used the cold cap (yuk!) but still lost about 50% or more of my hair and now have no eyebrows or lashes - great! That has never happened before on any chemo so I'm quite surprised, I've always managed to hang on to them even when I've lost all my head hair. Hope this doesnt worry you but just wanted to add my experience.
Bit quiet round here.
I'm 10 months from finding out I have bone mets. I am well used to the diagnosis now but it really has taken me this long.
Hope you dont mind but one other question to everyone. Do you know what happens after Paclitaxol? In other words, can you revisit a hormonal or will i be on chemo for ever now? Horrible thought. Xx
Hi Carolyn. Hug gratefully accepted!!!!!!!! I know it is a shock having the prospect of 'real' chemo. I had such a rotten time with it 16 years ago when I had my primary. Cant face the thought of it, let alone losing my hair again. Ugh!!!!! Take care. Xxx
I havent posted for ages. Just getting on with life but now I need some advice. PLEASE!!!!!! Into year 8 with mets to bone. I have had all the hormonals, plus Capecitabine and have now been on Palbociclib and Faslodex for 18 months. Feel ok on this, the main problems being fatigue and hair thinning. Since April I have had four blood transfusions due to low red cell count, plus my
white cells always fall at the end of each treatment and have to be helped up again with gcsf injections. The hospital say that because my bone marrow is suffering I will maybe have to go onto Paclitaxol, something I have been dreading. Does anyone have positive experiences of this drug. Also does anyone know of any other reason why the bone marrow could be compromised. I have already gone downmthe leukeamia road. I get blood results next week. Just dont know where to turn. Nanofthreexxxxx. Thank you.
Maldives, The nerve thing sounds painful and annoying!! Wow, for being able fix it in 15 minutes. I would definitely sign up for that! You can do America!! I know your meds are making you tired but I'm sure this nerve pain and hubby not being home is playing on you too. Once your "Rock" is home you will be able to handle it! Depending on where you will be here maybe we could meet up. Wishing you the best with your procedure! Rooting for you!! FF
I have been on herceptin and tamoxifen for nearly 9 year now. I am glad I checked back into this forum although it has been upgraded a lot since I last used it, there is a good chance that I will end up posting stuff in the wrong place. 😀
I should be so lucky ,doing all the things you mention,must be heaven ,even thinking about it makes me smile so thanks for that as have not felt like smiling of late ,so shall now go and just visulise what it would all be like.
Hi Carolyn and all other ladies ,
I have not been on for over a week as last week had herceptin and perjeta treatment ,which knocks me for six anyway then heart scan ,followed by c t scan ,plus radio therapy treatment scan and start radio tomorrow for 5 sessions so have not known whether i was coming or going ,plus not looking forward to r/t at all ,but hey if it helps all will be good ,its because breast is weeping and bleeding outwards so have district nurse calling again,to make sure everything is as it should be ,if honest i am quite scared of this outcome as not opearable and no cure just treatable so keeping everything crossed at once even legs when on loo,i should be so lucky as to have two legs as may manage it then .
take care and love to all
i have not not been on this site for years. I just thought I would check in and say hello again.
I was diagnosed with secondary BC in 2008. I have 2 mets in my spine and one in my hip. It's HER2 and E/R receptive. The disease has remained stable. I worked full time up until last year, I retired in November 2016. It's sad to see that some of the old timers are no longer with us however I am pleased to see that there are some familiar names as well.
Hi Maldives, hope you get some sense out of your onc nurse today. You shouldn't have to find out about such things by reading a letter. I hope all goes well on Saturday we'll all be thinking about you.
Hugs Bon xx
Maldives...try and ignore the 'survival rate' stuff...we dont know how valid the research was and anyway...it wont help to think about that!
hope tomorrow goes well...poor thing you have had a lot of things coming up!
yes I was on Taxol, made me tired...give yourself some slack and rest upxxx
drink loads of water thoxx
Another wasp hater here!
Hope you are all doing as okay as possible.
I cant remember if I said or not but my QT prolongation has gone back to normal so I am currently on my cycle of being off the trial drug. On Friday I start it again, they haven't reduced the dose which has surprised me as I thought they would have done because of my heart last time. I just have to trust they know what they are doing but it is very hard and worrying.
ive not been into work since my diagnosis in May, they have been excellent with no pressure to go back and just asking me to work from home as and when I can. I've decided to be brave and try and go back tomorrow. It's a very small office with only 5 other people in. I usually start at 8am, but having not been up at that time for a while, I'm going to go gently and start at 10am I think x
my apologies for the long absence. I was actually checking in regularly,but found very few people around for a while and ...became a bit busy elsewhere.
however, I think we all worry when one of us disappears.....makes us wonder if they are ok!
i am ok, but like Carolyn and Ff, find it hard to sleep and like ff I have been needing some space from my oh.
I do hope everyone is chugging along nicely?
MariaLouise, am so glad my words were helpful...life is a bit like that isnt it? I find that every so often someone will put something over in a way that really helps me......and of course on this forum we are lucky in having so many lovely ladies to chat with xxx. I hope things are going well for you now, am sure you will get some benefit from the drug too.
I read some research about twentyfive years ago ( must be) by the 'Simontons' drs in the usa who ran groups for terminal patients and found that many of them lived far beyond expectations.....well we are a kind of 'group'
arent we ladies?. And my guess is, this forum also extends lives.
Wow, great photo Bon. A definite plus side to the nights when we lie awake, I must check the sky myself when I'm lying there trying to get back to sleep. A good place to post it as its very uplifting and, as we know, we have a chat on the Bone Mets thread more than any so there's no reason not to share things like this. I have never joined the secondary private part of the forum partly because I think I'd have too many threads to try and track - it's busy enough at times on this part of the forum!
Hope everyone is enjoying the sun this Bank Holday weekend, all the others have been a wash out if I remember correctly. OH and I had a great day at Carfest South on Friday, great weather which helped a lot, a good start to the weekend - now onto clearing out our bedroom and bathroom waiting for the builders to arrive on Tuesday - not so much fun.
There are few upsides to not sleeping well but sometimes you see beautiful things. The other day I looked out at 5 am to see Venus close by a slender crescent moon. Dawn was breaking, bats were still flying and crows were having their first morning squabble. This morning I looked out at 4 am and saw Orion low in the eastern sky - a sign that autmn is almost here. It didn't look quite like like this picture.
Slept really well the night before last, can't remember when I last did. Felt so different yesterday.
This has nothng to do with bone mets. We used to post things that had inspired and moved us in the secondary private group but hardly anyone goes there now so please excuse me for postng here.
Hugs to all Bon xx
Good morning all,
I am amazed at all the breast cancer knowledge I have gained from this forum.
Thank you all who take the time to get this information and post it for us to read.
I can't believe there are so many treatments oncologist use to help us live longer.
I was diagnosed with secondry bone in March this year and was devastated but over the months this forum has helped me cope and I am more relaxed about the situation. Thanks ladies.
Take care out there and I hope the sun shines for you this bank hoilday.
Thanks Nicky, that does explain why they had to wait quite a while to get these results through. I am afraid I am a head in the sand kind of girl when it comes to my oncologist appointments and I just get the urge to bolt !! I must be more pro active and knowledge is power but I am a complete disaster as soon as I get in the hospital. So a big thank you to you lovely ladies .
The sun is out here this morning so I hope everyone has a lovely long weekend, out and about, in the garden or just winding down.
much love xx
Well, I think between us all we managed to explain things 😊
The other thing I've learnt about the HER2 tests is that they do an initial test using dye which locks into the HER receptors on the surface of the BC cells. Depending how much dye is taken up will give an initial result between 0-3. If you get a 3 you're definitely HER2+ and if you get a 0 you're definitely HER2-, however a 1 or a 2 do mean it's inconclusive so they go on to do another test at DNA level which is the one that takes the time as I don't think all laboratories do this test. That result will give you a score (I don't actually know what the range is). Anything over 2.0 is deemed HER2 + I am only slightly over this figure (and it used to be that 2.2 was the cut off point) which is why the oncologists have determined I won't gain anything further from Herceptin treatments as I didn't respond well to the last one. I've only learnt this recently, about the score results but you can search online for these explanations. I remain hormone positive which is why these type of treatments have benefitted me the most over the years - well, and chemo of course!
Thank you so much ladies I have a much better understanding of it now. I think my her status was the test that took quite a while to come back as it was inconclusive, eventually I was told + but I suppose only just if it took a while to decide. I will chat to onc at my Oct appt.
Red riding hood I do hope if you have a treatment change you can still get out in the garden, you can disappear into a different world sorting out flowers etc.
take care everyone, much love xx
Maria-Louise.........Like you I have been hoping that everyone is out there having a good summer! It has been a bit quiet lately. The weather hasn't been too good, but if things are booked then people go ahead, especially if it means going abroad. So things should pick up here at the end of Sept.
You asked about herceptin so I am putting my oar in. I am probably having a treatment change myself soon, but will have an MRI to make sure in a few weeks. I have been on letrozole + denosumab since 2ry dx 2 and a half years ago. All stable until now when a small change in the liver was spotted. I may now move to herceptin from letrozole......which has been easy for me.
Criteria for herceptin? You won't benefit unless you are HER2+ve and most 2dary people have a HER2 test at the start. Sometimes at crucial moments they will test for HER2 again, just in case. I had one HER2+ve result out of 2 biopsies at the start so herceptin was a possibility then, but I was stable on letrozole.....ER+ve 8/8 too......and lung spots vanished, so I stayed on that. Because of my possible progression HER2 becomes relevant again. So that is the first thing. Then the manufacturers......Genentech in US......trialled the new anti HER2 drug perjeta alongside herceptin and found a small but significant improvement when those 2 are given alongside chemo......docetaxel......for 6-8 rounds. Then the herceptin/perjeta continues for as long as it works. The trial was called CLEOPATRA.....acronym.
So....criteria involved are 1. being HER2+ve 2. herceptin is now taken with perjeta (pertuzamab) 3. docetaxel must be taken to start the herceptin/perjeta......unless the person has already had docetaxel in the past. In that case you can start without chemo.
It gets more vague in that the consultant has discretion with the chemo........if it is too hard then it can be reduced in concentration or in number of rounds. It just has to be tried. My onc has told me that. I am a bit worried at my age (70) and size (very small!) so he said it could be a lower dose, and/or fewer rounds. NICE has had to agree to the CLEOPATRA results of course.
I hope that is helpful. I am not an expert of course, and it is always worth looking further, or asking your onc. Everyone has different situations and needs. But most of what I have said is fairly accurate! It gives you an idea. Hope it helps and it is what you were asking about.
Out into the garden. If I start on docetaxel in Oct I won't feel like gardening so am trying to cut back a bit now! Take care everyone visiting the thread today!! Love to all,
Hi Marie Louise
Glad to hear you are feeling more positive, having progression (however slight) and a change of treatment always throws us I find. Once you get settled on the new hormonal you can hopefully have a breather. I agree that the hormonals can make you very achey though and feel like you are 97! I will be back on some form of hormonal in the next few months once I finish my course of Eribulin.
In answer to your question you only benefit from having Herceptin if you are HER2 +. I have had my HER2 status checked twice since developing liver mets and was told that my status had changed from negative to positive. However I have recently been told that I am only weakly HER2+ therefore won't benefit from having any more treament that is based on Herceptin. What I do know is that all BC cells have HER2 receptors but it's only when tested you find out whether you have an over expression of them. If you do have more than is usual you are likely to be given Herceptin. All BC tumours are tested for this, you don't need to ask to have it done but you can get a biopsy done (if appropriate) if you ever want it checked again - as I did after 5 years of mets. The majority of women's receptor status, including hormone status, won't change but it can do in about 15-30% of cases from what I've read. Hope this helps.