Triple negative secondaries/ recurrences

[Lavenderlassie]

Val, thank you so much for posting this just now! Just got the phone call re the actual scan, what a way to spend Christmas Eve.

Fairly similar symptoms, I thought I had carpal tunnel in the summer with pins and needles off and on and eventually some shoulder pain especially when I was on the computer especially the mouse. Had nerve conduction tests (GP now says to see if brachial plexus was involved, I didn't know that at the time) Test normal all settled down for a few months. Pain in shoulder blade area shoulder and to elbow but pins and needles elbow to hand. Brought on by computer work which is a real nuisance as half of my life is through emails etc
Recurred 7 weeks ago after a strain and left it for a bit convinced it would get better on its own.
I went to the local private physio as convinced it was a shoulder tendon, but he said it was apophyseal joint of a vertebra and did a mini manipulation. That made it worse then better then worse again so chickened out of the second visit and visited my GP who has said no more till scan clear. I go from being convinced it is mets to being sure it is age and arthritis. I am Triple Neg so not a lot of alternative treatment.
Thank you again for your morale boosting post
Lavender
xx

[scottishlass]

Hi Lavender Lassie, I am struggling with pins and needles too in my left hand especially my thumb and first finger. Had scans done and Consultant even scanned my Brachial Plexus ( had never heard of that before either!) but the results came back fine and reason probaly due more to old age and arthritis in my neck ( at least not bone mets complications). It may be also caused by Carpel Tunnel syndrome. Take you pick! But if your symptoms are anything like mine (I also get pain in same arm especially if lying on that side). If I raise my arm up and across my chest it eases, but I did notice that when I was in a shop and looking at goods on a high shelf, thus raising my head upwards, the pins and needles got worse. So I just try to avoid that!. I find that I am almost getting used to it and cannot remember now what i feels like NOT to have pins and needles. But it is a pain.....in more ways that one. Are your symptoms anything like mine? Hugs, Val

[Lavenderlassie]

Suddenly thought I had not had any reminders re this thread for a bit-and now see it's because there havebeen no new posts since Luara.
Sending love and light to all on this thread. Struggling with pain and pins and needles at the mo and have been referred for another bone scan. Being on the laptop makes everythingworse so mygreatestescape activity curtailed a bit!
Lavender
xx

[laura64]

hi all how you all doing as anyone heard of any phase one trials going on im under the marsden and they have 25 but not sure if i shld go down this route anyone else on any advice pls

[Sunnyty]

Hiya ladies
donna- so very sorry to hear your news, devastating for you and yr family. As Laura said maybe try RMarsden again, there maybe a trial for you. Hope the counselling is helping.
praying for you, sending you luv n hugs, xxxxxx

laura - hope yr doing ok, I've just completed day 14 of capectine, SE s mainly ok, 2 days off with tummy upset. Seeing onc next week hope to reduce tabs, maybe.xx

christine- good luck with appt. hope all ok.xx

ive had my hicman line out last fri, took over an hour!, got 4 stitches to come out tomo. Not sleeping much cos of v painful shoulder, apparently all connected to infection around the line. Hope it eases soon!
Hi to all , hugs Sandra, xxxx

[chrisp1e]

Hi everyone. Not posted too much recently due to either being busy or too gubbed to be bothered.
Sandra - Sorry you have new mets and growth in the one in your sternum. Having to be in hospital on 10 days of IVABs wouldn't make you feel too good but glad you're home now.
Rawlie - sorry to hear that you have mets in both lungs. Hope they get your treatment sorted out soon and that you get a positive outcome from it.
Donna - I'm so sorry to hear that your treatment hasn't worked out and sorry to hear of your prognosis. Hope they come up with something that's going to help you in some way.It's such a difficult time and not just for you but for your family too. Thinking about you and praying that there is a tretment available for you.
Wellmeant - I have lymphoedema in my arm and hand, but no swelling anywhere else. I wear a compression sleeve and glove on my arm but your GP may prescribe water tablets to get rid of the rest of the fluid. Sorry I can't be of anymore help.
I've had to get an emergency appointment with my onc as I've discovered another lump in my neck yesterday. I'm hoping it's only scar tissue from my lumpectomy earlier in the year as it's near the same site. Need to get it checked for peace of mind - I hope.
Hugs to all. Take care and keep safe.
Christine xx

[ddraper74]

Hi Laura
thanks for your message, I think my consult will refer me back to Royal Marsden, I'll ask my BC nurse when I see her today. Here goes chemo No.5. Lets hope its the mircle one.
Donna x

[laura64]

oh donna im so sorry how awful for you both unsure what to say really have you asked to go back to the marsden even if only for a chat to see if they have any more options for you ive been told there are more chemo for me so im hoping they are right you never know this chemo might be the one dont give up pm me anytime if you want a chat tc lauraxx

[laura64]

hi himi im under the royal marsden in sutton if u pm me i will tell you my prof name im on xeloda at the moe they are great i would not go elsewhere im sure they can treat her but also it might be a idea to ask if you can take the xeloda with you as its only for a short time its well worth asking gd luck laura

[chaanu29]

Hello Ladies
I've been reading this forum lately and very inspired with your lives.. so thanks everyone and keep on fighting..
My wife 29 yrs was diagnosed with secondary breast cancer triple neg in early Oct (earlier diagnosed and treated 22 months back) and found it's spread to lymph nodes.. she just finished her first 2 weeks of xeloda with one of the node seems disappeared (it was like a cyst on chest and can't feel now).
We live in Sydney but I have to travel to London for 3 months in Jan.. I didn't want to leave her alone so she'll accompany me.. Just wanted to check if you can suggest some of your oncologist in London who are treating similar cases...We'll speak to our oncologist as well to share her notes with the doc.. so her regular checkup can be done from there..

Cheers
Himi

[ddraper74]

Hi Laura
Consult brought me back in Friday cause FGFR inhibitor tested neg. , so that trial was a no go. The other trial in London is full at moment, maybe possible in new year. So my consultants put me on the second drug you mentioned, & maybe to ther one if that doesn't work.
I asthe fat fatal question, how long? With no drugs 1-2 months, with drugs maybe 6 months. Devastated. Husbands in bits, has now agreed to counselling. It's so hard to tell friends & family. I hate this, why do we have to be special with triple neg. They need to speed up with research on this, so unfair!
Donna x

[laura64]

No sorry well meant i haven't but hopefully someone will pop on to help why don't u call helpline I've not heard of that drug myself gd luck

[Wellmeant]

Could any of you ladies help? My wife is stage 4 and has had 5 types of chemo in the last 18 months, recently finishing Gem/Carbo on 19th September - scan showed things were stable. She is now on a break with Xeloda starting in the new year or maybe earlier.

Her disease in in her right breast and underarm nodes and several lymphnoeds with mets in both lungs - and lymphoedema in her right arm. February 2012 so she started with a lot of pain and has been on Zomorph, Oramorph, Amytriptline, Pregabaliin and an anti inflamatory this has controlled the pain with gradual increases of medication - the pain started again 3 weeks after the end of chemo so pregabalin was increased to 150mg twice daily.

In the last two/three weeks she has started to have swollen feet, ankles, calves, arms and hands with stiffness and very painful joints this is waking her in the night she is suffering. Our pain Dr is a little bemused although pregabalin could be the culprit but they are not sure so i have had to kick their arses to try and find a solution.

Have any of you has similar experiences with the swelling etc

[laura64]

Donna I'm being treated at the marsden for lung mets I've had 3 chemos since going there in may 11 I'm lucky I surpose that everyone as worked all bit it for only a short time I've also gtg see trial Plp be interesting to hear what they tell you have you tried taxol or eurbalin or vinirabline let us know how u get on Laura xx

[ddraper74]

HI all
Rawlie, I know exactly how you feel, after 3 cycles of Xeloda and 2 Avastin it's not worked again. My Onc asked what I wanted to do? I was only diagnosed with 2ndaries in Sept 12. The tumour in the left lung has increased in size. Luckily my onc sent me to the Royal Marsden down in London 6 wks ago for a chat, so I've asked to be referred back down there to see if they can find a drug on their trials that will work for me. Life is so shit, I've no kids and it was all that I want not this mess, I might then has a focus on them instead of this. Life can be so cruel at times.
Thanks Lulu34 and Jul74 for your messages.
Here's hoping to London, fingers crossed!!
Donna

[laura64]

Hi all Sandra I am still on cap at the moe have been on it a yr nearly it's still holding my mets stable but with a slight growth in one of the lung mets I've gtg back in dec to see onc so they will decide then they want me to go on erublin so we have to see. Rawlie its the pits ain't it when u get bad news I hate iv chemo but I've had xeloda for a yr with gd response also every time they switch my chemos I've been lucky they have worked v well and shrunk them so kp in there also my markers go up and down my onc sd they don't mean a lot it cld be lots of things scan is the best way gd luck all Does anyone here from sadie not heard from her in ages

[Rawlie]

Hi everyone,
Not feeling so positive today. Saw my onc on Monday before chemo (Taxol and Avastin) and due to the fact that my cancer marker has started to go up again, she has put me back on weekly chemo. She is doing this for a month to see whether the marker is going up because of the chemo being fortnightly or whether it has stopped working. I am so fed up that it is now weekly again as I felt that things were moving in the right direction and I was suffering less with the side effects. I also asked my onc if I might be eligible for radiotherapy or RFA and she said no because of having mets in both lungs and liver and the locations of the mets.
So I guess it's just chemo. When one chemo drug stops working and they move you on to another, is it possible to get a better reaction with the new drug? I know this question is always being asked but what other drugs work well on triple neg cancer? Feeling a bit desperate at the moment.
Take care,
Rawlie x

[Sunnyty]

Hiya lladies
had results of scan and new mets in lungs, also growth in mets in sternum too.
seen onc and I'm now on cap tablets started this wk. I've been in hospital for infection, had 10 days IV AB s, still got v painful shoulder.
Rawlie- your doing ok on avastin/ taxol, well done. X
Laura- sorry to hear yr news. How long were you on cap tabs for? Will you be on cap IV next? X
donna- how long have you been on cap tabs? I'm only on day2, my treatment will be ongoing.x
julie- how are yr Side Effects? Hope yr doing ok, bet yr little girl is getting excited about Xmas.x
hi to lulu, LLass,Christine,moondog, sadie, tara, hope your doing ok.
Take care everyone
keep on keeping on
sandra xxxx

[Rawlie]

Hi all,
Sorry to hear about your latest results, Laura. Hope your onc gets more treatment sorted out for you soon. Hope everyone else is doing ok.
I haven't been on for a while, been adjusting to new chemo routine. Having been on Taxol weekly and Avastin fortnightly since the end of May, my latest scan results in October showed lungs and liver stable. Would have preferred there to have been shrinkage but stable is ok I guess! Anyway, I am now having both Taxol and Avastin fortnightly until the end of Jan when they will do a PET scan. The side effects are more manageable now and I am actually able to get out and about a bit more which helps to boost the moral. I have also been having acupuncture which has been helping greatly with fatigue and nausea. Would highly recommend it.
Take care everyone.
Rawlie x

[chrisp1e]

Sorry to hear your news Laura. Hope they get things back nder control for you.
Christine xx

[Lulu34]

oh bugger Laura! Sorry to hear your recent news I hope the IV chemo gets it all back under control and stable again. Think there's lots of new chemos on the horizon too. Xxx

[Lavenderlassie]

http://www.breastcancercare.org.uk/community/forums/how-many-chemos-are-available-tn

for all those interested
Lavender
xx

[Lavenderlassie]

Dear Laura, Very sorry to hear your latest results not good, but glad your onc is talking about the next option.
I don't know where that list is, if I find it I will post it here, but don't hold your breath waiting!
Sending love
Lavender
xx

[laura64]

hi all no one seems to post now latest scan showed more growth so onc wants to stop cap and go onto iv just wondered how many more were left for me to have I've had a few and know there was a list on here but can't find it now bit worried end of Treament for me

[Lulu34]

hi donna. sorry to hear the chemos ddnt work on your primary.... That must ave been hard going. But hope the secondary chemo will be more effective for you.

sadie how are you doing? Not heard from you for a while and also tara.... fingers crossed that things are stable.

love and hugs to everybody.
lulu xx

[juls1974]

Hi Donna, nice to hear from you. Sorry to hear what your having to go through. Life isn't easy at the best of times, especially when you have a secondary diagnosis. Like you said, you just try and keep things as normal as you can and positivity is a hard one all the time. I've been so positive throughout my treatment and now have only just began to have some real bad days, and I don't like it. Its trying to deal with the new way you have to live your life and cope with it. Treatment is completely exhausting and that hits you hard too.I have a 5 year old little girl and it breaks my heart to say that I'm too tired to play with her somedays. My brain never switches off from it, I've tried...
Keep going with it, there may be some light at the end of the tunnel soon.

Julie x

[ddraper74]

Hi Ladies
New to this forum. I was diagnosed with TNBC June '11, had 3 different types of chemo with no effect, followed by MX with node removal and then radiotherapy. so, was pretty hopeful and life was going well. Planned to go back to work. I then came down with chest infection and had appt to see surgeon regarding reconstruction Back in August this year. They spent 6 weeks doing blood tests and scans before confirming I had secondary BC in the lungs. I have started chemo, Capecitabine (tablets for 2 wks, 1wk off). Onc. Consult has also put me on Avastin (IV) 2nd cycle in so early days but has been harder this cycle. I just have the nagging doubt in the back of my head '3 different chemos didn't work last time, will it work this time?' I am quite a positive person but its so hard when you know this is your life from now on.
i have to keep active & out and about seeing friends do going to art & exercise classes. The days when I feel tired are the worst, when the brains active but the body's is not.
It's great to have other people in the same situation to talk to.
Thanks Donna x

[moondog]

Hi Juls, see if you can get onto a nearby BCC overview day/bi-monthly meet up for secondary ladies. You'll get some info and meet up with others in your situation. It's difficult to keep strong and unfortunately the treatment makes it even tougher. BUT all is not lost. Hang on in there xx

[juls1974]

Hi lulu34 and sunnyty and all other girls on secondaries......
It is so good to be able to talk to others in the same or similar situation, as not really any groups around here for younger woman to go to. Have found it hard to get my head focused and stay positive. 1st lot of taxol last week went ok, apart from when I tried out the cold cap and was so sick for about 30 mins, but will continue, as really sick of loosing my hair now.
Have been extremely tired and very emotional. Finding it hard to spend quality time with my 5 year old and explain why I am so tired all the time.
I am in a very surreal place and wish that I could just snap out of it and take control again.
Is there anyone on the forum who is a similar age and lives in the Worcestershire area, if so be good to meet up.
Anyway off to bed to try and get some sleep....... Xxxxxx

[Lulu34]

Hi jules

iv not had taxol myself but from what i have heard is its pretty manageable as its given weekly rather than a larger dose three weekly like some other chemos..... Hope you managed ok and the SEs arent too harsh for you.

also heard apparently the hair loss is also slower and a friend who was on taxol only really lost her hair after about 5 weeks.... But not sure if she was just an exception.
xxx

[juls1974]

Hi girls, bit anxious today as starting taxol and zoledronic acid at local hospital. Round 3 of chemo........
Have liver lesions, bone and skin mets, and hope that this treatment works and isn't too many nasty side effects.
Anybody else out there been on taxol?

Juls x

[Lulu34]

Hello ladies

sorry i too have been missing in action a bit. And heading off on holiday this week for a few days in sweden and norway.... Never been before and very much looking forward to it.

laura sorry to hear things are pretty tough going for you right now.... Hope the ABs have worked and chemo can go ahead this week. Take care sweetie

BB sorry to hear the hip replacement isnt an option but hope they can give you something to help with the pain. You seem to be having a few set backs a the min so i hope the PE can be aspirated and things can move forward for you again.

jules good luck with treatment.

LL hope things are going well for you.

tara and sadie hoping your both quiet because your too busy to get on and sending my love to you both.

sandra hope the new pain management helps... I have heard positive things about the patches.... Hope your scan come through soon.

big hello to zoe, laurie, rawlie, chris, val and everbody else iv missed xxxxx

[Sunnyty]

Hi all
It is very quiet on here.
Jo/Tara sent me a pm earlier in the week. She's ok, been very busy, moving into her new house.
How are you Sadie? Hope your doing ok.
I've had shoulder pain since last w/e, hoping for ct n bone scan, next week or so.
Got lidocaine patches and painkillers.
Laura hope you feel better soon.

Luv and hugs Sandra xxxx

[busybee2161]

Thanks Lavendar Lassie. Still waiting for appointment. Hope you feel better soon Laura. BBx

[laura64]

hi all just a quick hello I'm not to gd at moe chest inf and a cold on ab hope work sn chemo delayed a wk catch up sn Laura

[Lavenderlassie]

Hallo, Busy Bee, I hope you have an appointment for having that fluid off soon. No helpful tips to offer, but a bump up the board so othrs may see your message. Calling Sadie and Tara!

[busybee2161]

Hi everyone, seems a bit quiet on here at the moment. I've seen the orthopaedic team about a hip replacement but too much bone in pelvis affected to do it. Also discussed TNT trial but have pleural effusion and waiting to have it drained. Hope you're all doing well but would love to hear from Sadie and Tara especially. BB xx

[Sunnyty]

Hi ladies
Juls1974 - hi and welcome !
I haven't had zometa, but I'm sure someone on here may beable to help you there. I started with avastin n paxitaxel july 11, have been on avastin since nov11. SEs with me were hair loss, muscle aches,Sore feet and hands and infections under nail beds of fingers. But that might not be the case with Yours. My secondary came back in lymph nodes in neck, and bit in breast bone too.Good luck with your treatment next week.Keep in touch. Xx
Cancer kiwi- hi and welcome too!
It is very shocking when you get yr secondary diagnosis, good luck with your scans and treatment too. Keep in touch.xx

Sadie- hiya, how are you? Yes I've got sec in lymph nodes, I had one large node , which was very uncomfortable, but has shrunk to hardly anything at mo. hope thechemo blasts it quickly for you.xx
Hi to moondog, rawiles, lulu,LLass, val, Jo/Tara, and everyone else. Luv xxx

[juls1974]

Hi girlies,

Been told today that I have 3 lumps in liver, and cancer has gone to slight areas of my breastbone, back and hip. Being triple negative and having secondary's is scary. Been told I will need to go on taxol and zometa every week for 3 cycles then have a free week.
Help! Anyone been there, just scared of the side effects. Do you loose your hair again, my little girl keeps asking me......
Need any advice, very nervous and start next week. Xxx

[Lulu34]

Hi ladies

sorry not been on for a while but just popping by to say hiya....

moon dog very interesting reading thanks for that.... Just briefly had a squizz but will read in more details later.

much love to you all

Lulu xx

[moondog]

Hi Cancer Kiwi, welcome! I was diagnosed back in May and have been on the TNT trial comparing Carboplatin with Docetaxol, I got randomised to Carbo and have found it quite doable. It is such a shock to get the diagnosis, I was devastated at first because I'd been told I was as good as cured. Things have settled back down now and half way scans show my teeatment's working well, so I hang on in there! You're in the right place for lots of support, there are some lovely ladies on this thread who will be along soon to say hello.
Moondog x

[Cancer_Kiwi]

Hi ladies
I'm new to this site - have triple negative secondary breast cancer - right breast, armpit, neck, chest lymph nodes and apparently in both lungs a bit as well. currently on infustion of Taxotere (once every three weeks) with the next infustrion due on 8th October. I live a long way away from you ladies, right down in New Zealand, but the internet brings us closer. Only diagnosed in August and it took 19 days from diagnosis to starting chemo, so all a bit of a shock. This second round of chemo has taken more of a toll on me = plenty of aches and pains this time, but thankfully no nausea. Due to have six rounds and then we shall see what happens. Anyone else on Taxotere (aka Docetaxol). Would love to hear from anyone as I have yet to contact anyone else with secondaries.

[Amore_Dulcie]

HUGE hugs for Heather xx get well soon!
Some of you sound like your having a really rough time xxx
I think the cancer has now travelled to my throat and neck..i have had a lump in my neck gland for years..so maybe any weakness's ..it goes for..
I am sorry this is not a more personal post...i am really worn out...
Dulcie xxxx

[moondog]

Hi ladies

I came across this article the other day and thought I would share it with you.

http://www.prweb.com/releases/CBCF/TNBCannoucement/prweb9576703.htm

I particularly liked the bit that says that this "has the potential to cure TNBC". I followed it up with an email to Breakthrough Breacst Cancer UK who are working in collaboration on the project. They kindly got back to me really quickly with the following update;

The first study you refer to was led by the researchers based in Canada in collaboration with Prof Alan Ashworth and Dr Chris Lord from the Breakthrough research centre in London. Alan and his team have a long standing interest in the genes that cause breast cancer and how we can exploit these genetic weaknesses as treatment. In this work they found that by blocking a protein called RSK2 actually killed cancer cells. They did this first on cells growing on plastic dishes in the lab and then this also slowed cancer growth when tested in mice. Using patient samples they found that breast cancers with large amounts of RSK2 protein did less well and that is associated more with basal like breast cancer (or triple negative breast cancer). I spoke to Chris earlier and he told me that they do believe that this has promise as a new treatment for triple negative breast cancer, particularly as there are drugs available that block RSK2, but there are still more animal studies to be completed and analysed before this can move closer to the clinic.

So, early days, but promising and I'm guessing that the fact that drugs already exist to block RSK2 will speed the process up.
Breakthrough also told me about a conference focused on Triple Negative breast cancer next June. The meeting, aimed at scientists and clinicians, will cover all aspects of triple negative disease with a workshop atmosphere allowing opportunities for discussion and sharing expertise across disciplines:

This meeting builds on the successful conference held in 2011 and will highlight novel laboratory approaches, innovative pre-clinical science and the latest clinical trial results. The conference will include sessions on emerging developments, pre-clinical modelling, the role of host-immune response, approaches to trialling targeted drug combinations and strategies for clinical management of triple negative breast cancer. The aim is to advance our understanding of the aetiology, diagnosis and treatment of this challenging disease.

Hang on in there triple negsters things are happening ...........

Moondog xxx

[bestfriend]

thanks Moondog, I have spoken to her today and she is feeling brighter, antibiotics must be helping... I will def pass on your positive experience and tell her to ask about the talc procedure xxx

[moondog]

Hi Bestfriend
I had fluid around my lung and ended up having nine pints drained,what a relief! Ask them about getting a pleuradesis (sp?), a very straight forward procedure when they squirt talc into your pleura and it glues the lining of the lungs together and stops fluid building in the future. Sounds grim but very quick and can just be done at your hospital bed. Tell Heather to hang on in there, there is hope, she can pull through from this.
X

[bestfriend]

Tillycat, hope you feel better soon, that must have been very scarey. Heathers breathlesness and chest pressure has been building for weeks. Nobody seemed to take it seriously and she minimses pain etc when she talks to docs and nurses to keep optimistic, doesn't always get her the best treatment tho. Who am I to criticise! Its hard to help sometimes when I don't really know how she is feeling xxx KIm

[bestfriend]

Oh Sadie, hope you feel beter soon. Heather saw onc on tues, didn't have chemo as she was feeling so poorly, but onc re-examined the xray from A and E on Sunday and said she has 2 to 3 litres of fluid round her lung which needs to be drained, after the A and E doctor had said the amount of fluid was negligible... so good news really as we can look forward to some relief when they drain it. She is feeling much better without chemo. I don't know how much longer she can put up with the side effects of chemo, her quality of life has been awful lately, not eating or drinking much and sleeping most of the time.
Sorry not good news... Val, try the Best Exotic Marigold Hotel, great film x

[moondog]

Hi Sadie, good to hear from you. My CT scan showed infected nodes in my neck but neither me or my onc could ever feel anything from a physical examination. Not very helpful, I'm afraid. I think I recall the Marsden saying that they could blast them with radiotherapy if they ever became troublesome.
X

[SadieL]

Hi ladies.
I posted a long post about a week ago nd can't nowsweet it. Still frustrated!!!
I need some advice. Has anyone else got lymph glands in their nect infected with cancer. I have and they are so swollen I feel like I'm being strangled. I know I've got a bit of an infection as my infection markers are up nd I've had a high temp. So I'm wondering if they will reduce in size once this infection is conkered. Has anyone elseexperienced this?
Hugs to everyone out there,

Sadie Xx Xx