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Triple negative secondaries/ recurrences

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Re: Triple negative secondaries/ recurrences

Hi,

 

Don't know how to add a link but just read an article in the Daily Mail re discovery in Cambridge of a gene that is impacting triple negative in mice. Not testing on women yet but that will be the next step, I know this is very early stage research but sounds like it could be a positive step? 

 

Start radiotherapy for newly discovered brain mets on Monday (thought I was having stroke, fraid I wasn't!) Put on steroids which have been great and have had fantastic care from the staff at my hospital. 

 

Sending hugs and best wishes to all us Triple negative ladies.

 

Abi

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Re: Triple negative secondaries/ recurrences

Hi Lulu

 

Please let me know when you reach a decision and also post your progress

 

Luv n hugs SueWoman Happyxxx

Member

Re: Triple negative secondaries/ recurrences

Hiya bazcas Sue

My onc said it's the wbrt that breaks down the bbb. So if you haven't had whole brain rads then that's prob what he is referring to. Capecitebine is one of the very few chemos that can break though the bbb. But again it's not 100% think may work in less than 50% of cases... Or perhaps even less!

Maybe your onc doesn't want you getting your hopes up that it's gonna work so works on the the pessimistic view.

Anyway I've still not come to a decision yet regarding the pros and cons of stereo versus surgery.

Love and hugs Lulu xxxx
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Re: Triple negative secondaries/ recurrences

Hi Lulu

 

Nor sure what you are asking here, but I can tell you about the Stereotactiv Radiosurgery. I have had it done twice as a day patient  I was at the hospital approx 7 hours but the treatment was only between 20 and 40 mins. I must admit I found it much less invasive than surgery, all tho this was not an option for me. I am very confused regarding Capecitabine as someone on here has said that it breaks thro the Blood Brain barrier but my Onc told me quite categorically that this was not the case?Cat Frustrated. By the way I did not have any side effects from the Stereotactic procedure. Please let me know what decision you reach and also your progess lots of love ang hugs

 

Sue xxxx

 

Ps just off for my 3 weekly visit to see Onc grr. x

 

Member

Re: Triple negative secondaries/ recurrences

Hi bazcas sue

I'm getting stereotactic rads for my brain mets but there is a view to having mora rads to my lung mets but don't think this would be stereotactic.

I'm now in a bit of a dilemma though as I've had a call on behalf of someone from the surgeon who did the previous neurosurgery saying he was willing to go in again....... So now I'm in a right old quandary!

I'd set myself up for one thing but now potentially look at something else.

Need to ask a number of questions like was this consultant invovonved in the MDM? If not why not seeing as that's who they were referring me to? What are the recovery time and the risks as I'm obviously not as fit as I was when I had my surgery back in June? And would my consultant be agreeable to going down this path instead of the SRS? But it has given me another 6months although presumably I wouldn't get as long this time around.... And in the meantime my disease could be (and most likely will be) progressing elsewhere.

Hi Desi
Skull mets aren't in the brain but in the bone surrounding the brain so are in effect bone mets and therefor work differently to brain mets.

However I have tried capecitabine for brain mets as its one of the few chemos that can break through the blood Brain Barrier (BBB) especially if you have had prior WBRT which breaks the BBB down a bit.... Buts it didn't work as well for me as they were hoping for, and that was when my brain tumour grew back the first time and I needed neurosurgery.

I think you need to clarify what kind of mets you have or maybe you have both brain and skull mets. But I think it's good to know this.

Welcome to Maxine I hope you fiend this thread helpful even if it's a bit on the old side.

Hi sue thanks for your kind words.

everybody to everybody hope you've all had a very happy new year. Much love Lulu xxx
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Re: Triple negative secondaries/ recurrences

Lovely to hear from you again Lulu and so pleased you are feeling better now. You are such a tonic! I wish you every happiness as you were such a support to me during my early days of diagnosis

Love Sue x

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Re: Triple negative secondaries/ recurrences

Hi Maxine, welcome to the site I am quite new on here but you will get loads of support from all the lovely "girls" on here. Have you posted anything yetWoman Very HappyHeart Love n hugs Sue xxx

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Re: Triple negative secondaries/ recurrences

Hi bazcas! I'm new to this page and I don't really know how it works but I'm glad you had a lovely Christmas & I wish you a Happy & peaceful New Year 2015 Big hugs Maxine
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Re: Triple negative secondaries/ recurrences

Hey lulu great to hear from you and to read such an encouraging post! Always thinking of you. ..glad you enjoyed xmas and hope that wee grandson of yours is keeping you going! Youve been through such a lot...yet still smiling and i cant believe the number of treatment options there's been for you. Clearly somethings working for you even though there's been loads of surgery. Keep it up lovely lady and keep us posted just when you can. Enjoy New Year if you can (Im not a big fan but will watch the fireworks on tv) !!
Will be raising a glass to you and all the other lovely ladies on here xxxxxxx
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Re: Triple negative secondaries/ recurrences

Hi Lulu it's great to hear from you and wish you success with the surgery. Was wondering if you had tried Capecitabine? I've had rads for skull mets recently and admit the risk of progression to the brain is a constant fear but I have to wait til the end of January to start another treatment. Thanks xx
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Re: Triple negative secondaries/ recurrences

Hi Lulu well like me you have certainly been through the mill!!! I am not sure if you are having Stereotactic Radiosurgery for brain mets or lung?  It was Stereotactic procedure that I had for brain mets but I saw the Nurosurgeon on Monday and on the Thursday I had the procedure done. Anyway good luck and pease let us all know how you get onWoman Wink

 

Luv and best wishes for 2015

 

Sue xxx

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Re: Triple negative secondaries/ recurrences

Lulu,lovely yo hear from you. My god you have been through it. But fantastic you are now stable and can be zapped again.
Wishing you all the love and luck in the world,you are an inspiration and a lovely lady too,massive hugs,Helen xxxxxx
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Re: Triple negative secondaries/ recurrences

Hi there Sue

I did have surgery for my recurrence but I just had a lumpectomy.... So was only out for a couple of hours max. My surgeon basically did a WLE and an ANC.

Just gonna do a wee update now as I know folk have been concerned about me but I'm fine.

I can't remember when I last posted though. But I went away to the breast friends Christmas chill out which was so much fun.... As per norm I managed to get up and dancing on the table.... Even had my wheelchair up on the table and was dancing in that too lol.

When I got back I was booked in for 5sessions of rads to my fractured ribs from my bone mets.... I also started zometa at some point around then... And was due for a brain CT scan too.

On the day of my scan I wasn't feeling too good but wasn't sure if it was because of the zometa the day before or the rads which I was still due the final one of after my CT.... Anyway managed the CT but when I got to rads they were like oh you don't look well.... Had a temp of 38.9 and was sent up to oncology assessment..... Really thought I wasn't gonna make it!

I was admitted and they reported my CT asap which showed I'd had a brain recurrence.... So I was booked in for a brain MRI (which is more sensitive) on the Monday and this showed the tumour was the pre WBRT size and almost the pre-surgery size.....

I then had my final zapp of radiation and as my temp was now normal I was discharged home. But I had an appt to come in the following day for a chest, abdo, pelvis CT.... To assess my other mets as my team thought I could possibly be a candidate for more neurosurgery.

On Friday I felt I was getting the run around as nobody wanted to tell me anything. And then on Sunday I had a call from the hospital make an appointment for Xmas eve! Again I Asked if they knew my results which they obviously did but it was only at 8pm on Monday that my Onc called to tell me what the outcome was.

Basically my liver mets are stable. My bone mets are also stable according to my bone scan but shows as progression on my CT.

My lung mets have grown back to their pre treatment size.... Over 8cm. But not too bad considering I've had no treatment since 31st aug.

IT turned out that I'm not a good candidate for more surgery but I would be considered for stereotactic radio surgery which is my hospitals equivalent to gammaknife/cyberknife just on a different machine.

It takes about a month to organise and they were able to make my mask and do my planning on Xmas eve so I'm just waiting on a date.

So from feeling really miserable I'm back to my happy smiley wee self again 💗💗💗
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Re: Triple negative secondaries/ recurrences

Hi Macie

 

I can fully understand your decision re the operation. I was on the table for 9hrs with the Thoracis team and  the Plastic Surgeon. Like you I was terrified of the surgery I had the top section of my sternum removed and replaced by mesh cage and both clavicles were cut back and several ribs. After the op last January I was treated for psycriatic problems, hallucinations and a fear of everything  etc until March when I had an MRI scan on my brain and a tumour was found. So it was goodbye to the Psychiarist and hello to Gamma Knife procedure. I continued to recover until Sept when  results of scans  showed traces of cancer in my liver and 3 vetabrae and I was placed on Capecitabine immediately. I then had a further MRI on brain, fortunately instigated by my OH and a small tumour was found so once again I had Gamma Knife treatment and now await next scans after 6 cycles of chemo..I have to say the op was horrendous and I still have se's my whole chest feels deformed and I can feel bones (ribs) moving when I am in certain positions. My Onc still says it was my best option so who knowsWoman Frustrated

 

Anyway Macie I would like to wish you and and all the lovely ladies on his site a Very Happy New Year, and keep on fighting.

 

Love n hugs Sue xxx

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Re: Triple negative secondaries/ recurrences

Hi,sue,I'm not sure how long I'll be on cap I presume until it stops working. I think I'll be due a scan in March. I'm TN too.
Huge hugs,Helen xxxx
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Re: Triple negative secondaries/ recurrences

 
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Re: Triple negative secondaries/ recurrences

Hi Sue I had recurrence in chest wall and sternum and was referred to a London hospital to see consultant with the view of having the sternum removed and replaced with some sort of cage but the thought of 12 hours operation with 2 teams of surgeons was to frightening for me to even think about at my age and whether I would survive or not. My onco then applied for funding for me to have cyber knife treatment which had a degree of success but only for a year before progression.
I have just finished my 12 cycle of Cape and the last scan 3weeks ago was stable no further progression iam also TN. Love Macie x x x
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Re: Triple negative secondaries/ recurrences

Hi Lulu I know you had chest wall recurrence same as me ......did you have surgery.

 

Luv n hugs Sue xx

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Re: Triple negative secondaries/ recurrences

Hi Helen   do you know how long you will be on Cap?  I think I will have scans after my 6th cycle and then we will see what is happeningSmiley Frustrated

 

Luv n hugs Sue xxx

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Re: Triple negative secondaries/ recurrences

Don't know why I haven't put this before but my name is Sue xx

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Re: Triple negative secondaries/ recurrences

Hi,bazcas, glad you had a fab Christmas and it sounds like a great New year party. I'm on my 6th cycle of cap and take manuka honey too.
All the best for the new year,huge hugs,Helen xxxxxxx
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Re: Triple negative secondaries/ recurrences

Hi lovely ladies hope you all managed to have a peaceful Christmas. I had  lovely time with my special OH and family. Now looking forward to N.Years eve, when we will be celebrating at a local hotel with family and friends. I am sure this topic will appear on other threads but just wanted to say I have just finished my 5th cycel of Capecitabine and fortunately without too many se's, I take 1 spoonful of Manuka 15+ honey daily and swear by it, does anyone else feel the same.

 

Wishing you all a peaceful New Year....keep strongWoman Happy

 

Luv n hugs to all BazcasHeartxxxxxx

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Re: Triple negative secondaries/ recurrences

Hi bazcas.....you don't need to 'join' the Christmas party.....just go on there and post and have a virtual hug, drink or rest.

I haven't posted on it yet because I have told myself that I am not allowed to until I have all my presents wrapped and my cards posted. Nearly there now...got loads done today.

This forum is great for getting info, asking questions and cheering ourselves up. We can be as serious or as silly as we need to be....

Sorry about the hard time you have had this year, but you have the right attitude....and as you say sometimes just posting - and thus getting things off of your chest is a big help!

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Re: Triple negative secondaries/ recurrences

As you say 'daft as brushes'. I refer to my tumour as 'the alien in my abdomen'. The last Consultant overseeing me on the ward asked if I had more defined pain from the 'alien' or laparotomy scar!! I refer to the leaking ascites as 'alien juice' although it was frightening when they turned me on my side the day after op and bed got soaked.

There were some dark days when I thought it had got me, especially when my heart went into AF & was on hourly obs, and frequent heart scans as phosphate level was very low. Drinking fizzy medication was horrific as I had acid reflux at same time - connected with having the stoma. Eventually they did it by infusions.

I now have a very naughty alien!!

Moneck

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Re: Triple negative secondaries/ recurrences

How do I join Christmas Pary xx
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Re: Triple negative secondaries/ recurrences

Welcome Bazcas, you've had a terrible year and I hope that 2015 is easier on you. It's good to come on here to find things out and get support, but it doesn't all have to be cancer related which I find is a godsend as it takes up so much of our valuable time anyway.
See you at our Christmas Eve party!
LD x
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Re: Triple negative secondaries/ recurrences

Hi Bazcas sorry you've had to join us but you will get plenty of support from the lovely ladies on here.You have had a really tough year so glad that you remain so positve that's what keeps us going.I have found the support on here is amazing and we,re all in the same boat so it helps to talk to people who understand.
Take care
Hugs Kaye xxx
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Re: Triple negative secondaries/ recurrences

Hi Bazcas, so sorry you have to join us on the Secondaries forum but you will find much support here.
The Christmas thread is here,
http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/The-Secondary-Christmas-Drop-in...
all secondary posters are most welcome. X
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Re: Triple negative secondaries/ recurrences

Hi girls

 

Thank you for your replies this sounds like just the sort of support I need.... please tell me how to join the cyber Christmas party.

 

 

Many hugs to all

 

Bazcas

 

 

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Re: Triple negative secondaries/ recurrences

Lol bev,oh yes,we are as daft as brushes ,but it keep us sane. The ladies on here are amazing and help get you through dark days and celebrate with you the sunny days .
Huge hugs,Helen xxxxx
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Re: Triple negative secondaries/ recurrences

Hi Bazcas,
Welcome on board. This is such a lovely place to come and share - there is always someone to listen and help. You really have had a rubbish year. I hope 2015 brings some more positive news.
Xxx
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Re: Triple negative secondaries/ recurrences

Welcome bazcas! Great that you've found us but sorry you've had such a rough time of it. You're so lucky that you were able to have the gamma knife too...we don't have a Cyber knife here in Wales!
Please post as often or as little as you like. The support is amazing from the other ladies. Although a lot of the time (you'll soon come to realise) we're as mad as a box of frogs....eh Helen????
Love to instill some humour into our down days! 😉
Keep positive. We're here when you need us 💖
Love and hugz... ..xxxxxxxx
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Re: Triple negative secondaries/ recurrences

Hi,bazcas,and welcome to the forum,we are a very friendly bunch ,full of support and advice.
Wow,what I time you have had and you have remained so positive xxxx
Sending you huge welcome hugs and please pop into our cyber Christmas party on Christmas Eve where we will all be raising a glass to each other and friends no longer with us.Helen xxxxxx
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Re: Triple negative secondaries/ recurrences

Hi ladies

 

Just thought I would introduce myself to to this site. I was diagnosed wih stage 3  ER positive BC in feb 2001 and had a mastectomy followed by 8 sessions of FEC and then Radiotheraoy for 4 weeks. I then went on Tamoxifen for 5 years followed by Femara for a further 2 years. In Sept 2013 I was mis-diagnosed with chest wall Lymphedema which in Oct 2103 it turned out to be a local recurrence which had morphed into TNBC....hello!!  I had chest wall resection and reconstruction in Jan 2014 which is massive surgery and mentally I never recovered from it. In Feb 2014 I was admitted to a Macmillan Unit in Sheffield where I live and in March they sent me for an MRI Brain Scan which showed up a tumour and I was fortunate to be given Gamma Knife treatment. Afer that I slowly came back to my normal self mentally and was discharged in the middle of April. In July we managed to get to Ibiza for 11nights and had a wonderful holiday. Two days after returning home I saw Onc for some scan results and was told there are traces of cancer in 3 vertabrae and in my liver so I was started on Capecitabine immediately, then prompted by my wonderful partner Onc arranged for a further MRI Brain scan and low and behold another small tumour had appeared. So in November I once again had the Gamma Knife procedure and wait to see if the Chemo is working apparently Chemo does not work on the brain as there is a barrier around it for protection. Anyway after a very CRAP year I remain strong and positive and am learning to live with secondary BC. It is very insperational to read other ladies story on this site. Keep up the fight girls and don't let cancer win. Sorry for long scroll but even that has made me  feel better lolWoman Wink

 

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Re: Triple negative secondaries/ recurrences

Tracey hope the wedding goes ok and youre feeling well for it. Thanks Helen for the info...its a bit scary when u dont know how long you'll respond to the chemo isn't it? I suppose we all want an infinite amount of years xxx
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Re: Triple negative secondaries/ recurrences

Hi,bev,if you are like desi and myself and have very low ER+ ,hormones may not be of any benefit . But your onc will tell you more.
From what I gather as I haven't start cap or any chemo is you stay on cap for as long as it holds the beast back and you do have breaks from it when you want. But like all treatments they will stop working as the beast adapts. They your onc will probably put you on another chemo if hormones don't work. That's what I was told by my surgeon but I'll get more info when I see my onc.
As for wine I don't know,sorry. I probably think you can or there are a lot of tea totalers on here!
Take care and huge hugs,Helen xxxx
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Re: Triple negative secondaries/ recurrences

Hi,Tracy,OMG not long for your op now. Oh no to infection ,I'm sure it will clear up in time. It's probably a good job you didn't have op on the 9 the as that's all your body needs is an infection on top of an op. Our poor body are dealing with so much.
Did onc say why you had to do IV chemo first? I want to do cap first but I'll see what he says on 21st. I don't think I can cope with the big guns chemo at the moment. Perhaps after my holiday I'll have to.
God,we are both following the same path with meds at the moment and on same time scale.
I hope you get to your wedding today and your feeling better soon.
Huge hug and good luck with op,but I'll speak soon to you go,take care,Helen xxxxxxxxx


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Re: Triple negative secondaries/ recurrences

Hi ladies. Im currently coming to the end of my first 2 weeks on Cape for lung mets. At a previous meeting with Onc he had said that my treatment would be Cape and probably hormone therapy when stable. But when I went 2 weeks ago for my first prescription he said it would be just Cape. I asked about the hormones and he said that because I was only weakly positive he didn't think hormones would be of much benefit.
Wouldn't I have something like an AI as I'm post menopausal? Feel a bit scared if I'm not going to have anything in between.

Also....can you have a glass of wine while on Cape? My son is taking us all out to a beautiful restaurant for Sunday lunch this weekend and wondered if I could have a glass with my meal?
Love to all♡♡
Bev xxx
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Re: Triple negative secondaries/ recurrences

Hi Helen well he said sometime ago that when chemo has to be it will be IV. My lung op is now scheduled for 23rd after initially being told the 9th. And I now have a throat infection so on antibiotics, just hope it clears in time. Typically we have a 40th to go to tonight but don't feel well enough so hoping if I stay in tonight I will be able to go to a wedding tmo. Hope you have a good weekend and I love the pink crocs!

Tracy xx
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Re: Triple negative secondaries/ recurrences

Great news Monica! Just shows how things have improved. It will be good to have a break as I think it will give your body time to recover from the drugs. Then you are fresh to start again if necessary. Have a lovely holiday. Xx

 

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Re: Triple negative secondaries/ recurrences

Hi,desi, I know what you mean. I'm looking at TNBC now mine is hardly ER+ And hormones are now out,sod my bl@@dy cancer for changing.reading Monica's post has given me hope. Is your onc putting you on cap next? That's what's been discussed by surgeon with me,but I have to see what onc says when he gets off his many holidays!
I hope your keeping well Tracy and the lung mets are behaving and not giving you too much trouble. Huge hugs & take care,Helen xxxxxxx
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Re: Triple negative secondaries/ recurrences

Hi Monica it's great to read your post.,I'm only weakly er and her- on letrozole at the moment but have had progression. Lung op on 23rd to determine which cancer and check status. It does worry me hugely if hormone therapies fail for me but reading this has made me feel more hopeful. Thanks xxx
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Re: Triple negative secondaries/ recurrences

Hi,Monica,fantastic news xxxx wow,you have been busy. We've just celebrated our 30th Anniversary last month.
Huge hugs,Helen xxxxx
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Re: Triple negative secondaries/ recurrences

Hi Everyone,

I saw my nice Onc. on Monday & he was delighted to tell me that the tumour markers have remained at 600, we know there is a long way to go but as I feel & look well I won't be going back on Cap. just yet. He said to return in 6 weeks then asked if I was having a holiday - got a break planned in the Lake District at that time so he will see me in 5 weeks. To have CT scan prior to this.

I have been enjoying myself at various celebrations - a 50th anniversary & the following day a 60th anniversary; been to see Dawn French in her own show and been out here & there visiting museums & friends.

Hugs to all, MonicaSmiley Happy

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Re: Triple negative secondaries/ recurrences

Hi everyone, so glad there is a triple negative thread on here, although it took me a while to find it!

I just wondered if there is any ongoing treatment we triple negatives can have to try and 'keep things at bay'? I mean in the way others have herceptin for years. Or is it just chemo/radiotherapy then wait and see? Sorry if this is a very naïve question -I'm still quite new to this. xx

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Re: Triple negative secondaries/ recurrences

Brilliant news Monica xxxx
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Re: Triple negative secondaries/ recurrences

Hi Monica - that's fantastic news. The writing of one letter has enabled you to feel so much confidence again. Really pleased you did it. Now we'll be holding you to the go out and enjoy yourself. Let us know how you get on.

Take care,

Hxxx
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Re: Triple negative secondaries/ recurrences

My appt went very well yesterday, he began by asking how I felt & any problems - just my expanding waistline. I do NOT have bone mets. As said last October I have a 'condition' in the bone with a long name possibly due to the severe sepsis I had 3 years ago. The tumour markers are down to 600 - started at 1,800 last October. He is in no rush to resume chemo & will wait until they go up, then probably go back on Cap.

If fluid in abdomen increases they will drain it.See him again in 6 - 8 weeks & meanwhile to enjoy myself!! Smiley Happy Smiley Happy

 

Thank you to all for your support,

Monica

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Re: Triple negative secondaries/ recurrences

Good to hear xxxx
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Re: Triple negative secondaries/ recurrences

Well writing the letter worked!! I had a call today from one of the oncologist's secretaries to say that I will be seen by my usual onc. next Friday. So, will get the answers I need in a caring way.

Meanwhile I am enjoying the 'chemo break' by travelling around visiting friends.Smiley Happy