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Triple negative secondaries/ recurrences

Member

Re: Triple negative secondaries/ recurrences

Hiya Michelle and welcome
Scary time but until u get the scan etc you are in limbo really.
Please keep visiting here as you will find a wealth of experience, kindness and support.
U might like to join the private forum as we have lots going on there with gardening club and games etc.
It's all a focus away from the real world.
Hugs xx
Member

Re: Triple negative secondaries/ recurrences

I'm new to this group. Diagnosed in 2013 with TNBC. Survivor now. I do have a concern because a mamo showed a non specific lymph node and I am waiting on insurance to approve an MRI. It's taking a while and it's very nerve racking. I don't know what a non specific lymph node means and I also have had a bump on the back of my neck for a while. I'm just starting to freak it and become a head case when I have always had a very positive attitude and I don't worry about things until it's confirmed. I just can't shake this horrible feeling esp since I'm still within 5 years of diagnosis. Help!! lol!
Member

Re: Triple negative secondaries/ recurrences

Spudgirl, just wanted to reiterate everything everyone has said. We are sorry you have had to join us but hope you will find this forum helpful...even if its to have a rant and a scream. We are all with you on the daughter front....we would all do anything not to put our children through this. Dont be hard an yourself and try to rest p whenever possible.Good luck with the move and let us know when you are settled and have atreatment plan. xx

Member

Re: Triple negative secondaries/ recurrences

Spudgirl.
How awful for you to have to do a double whammy with dx and then moving . Your daughter must be quite young and so hard for her to have to have that sort of news.
Kids do adapt and are quite resistant to life but you must also focus on your treatment plan asap when you get back to the UK.
It's such a hard life but we women are tough cookies and cope somehow
Keep in touch with us as there is such good support and kindness here as we are all on this roller coaster. Once you know which treatment you are going to be on ..there are special threads where there is always help and experience.
Hugs xxx
Member

Re: Triple negative secondaries/ recurrences

Thank you so much.

 

i broke the horrible news to my daughter about half an hour ago,  first about the cancer - massive sobbing, then about leaving here - massive sobbing, then about the 2 week timeframe - massive sobbing.

 

It felt awful.  My heart completely breaks for her.   However she has now told me she wants to go to school tomorrow as she has a French test she wants to do and they are also cooking Brownies.  

 

Ive told her if she wants to come home at any point, the school can ring me and I'll pick her up.

 

i still feel like I'm in the middle of an terrible nightmare and I'll wake up soon. 

Member

Re: Triple negative secondaries/ recurrences

Hiya spudgirl.
Welcome to our family.it's always hard to take in dx of secondaries but coming back to the UK is a good move ..we moan about nhs but most times the treatments are wonderful.
Once u meet your oncologist and get the treatment plan you will b able to focus.
There is loads going on here if you want to join
The private forum where we have a book club photo gallery and loads of topics running.
The busiest thread though is the one " bone mets" ..always a bit of nonsense gping on there to cheer you up a bit as well.
Xxxx
Member

Re: Triple negative secondaries/ recurrences

Good morning.  I'm a newbie to this thread.  I had TN breast cancer in 2013 and yesterday I got told I have a 1cm lung met and 1cm breast bone met.  At the mo I live overseas, me and my family are being repatriated to UK within next two weeksso I can start treatment,   So I've got a massive move and a cr@p diagnosis to deal with.  I also have to tell me young daughter tonight, I am devastated for her as not only does she have to deal with this, but also that she has to move countries and school and leave friends.  I don't even know where we will move to yet! 

 

i don't know where to start with reading through all the info on this site.  My mets sound small, so that's a positive isn't it? 

 

Im feeling a bit lost. 

 

xxxxx

Member

Re: Triple negative secondaries/ recurrences

"Bumping this posting up for Arnie.
Member

Re: Triple negative secondaries/ recurrences

 
Member

Re: Triple negative secondaries/ recurrences

 

already posted in here oops sorry x

Member

Re: Triple negative secondaries/ recurrences

It could well be the chemo. Many of them cause a bit of numbness or tingling to hands and/or feet. Worth mentioning next time you see someone for treatment. What chhemo are you on? There is bound to be at least one thread on it in the treatments section where you can pick up tips on dealing with any side effects xxx
Member

Re: Triple negative secondaries/ recurrences

Thanks Elliie for your kind words, I'm again on here in the wee hours having woke from a nightmare with tingling feet, just wondering if the  side effects of chemo has brought this on: 

Member

Re: Triple negative secondaries/ recurrences

Hiya Patricia
Just wanted to send lots of good hugs and thoughts for tomorrow.
Please let us know how you get on .
Hugs xx
Member

Re: Triple negative secondaries/ recurrences

Hello you beautiful ladies

 

I have an appointment for the results of my CT scan tomorrow so i am feeling shaky this evening I just hope the TN cancer has not spread anywhere else from where it was found off my scar in my axilla. Just fearing the worst.

 

I am assuming that i will now have to retire from work as treatment will be for the rest of my life.  Is anyone managing to work still whilst having a secondary dx and treatment?

 

Tricia xxxx

 

Member

Re: Triple negative secondaries/ recurrences

Patricia,

I got my secondary diagnosis a week after my MX so I went from expecting a year of work for treatment and recovery to not knowing whether I could go back. In the end after about a year I tried to negotiate new, shorter hours but they weren't willing to accommodate. I went through my union and in the end accepted a settlement and left on the grounds of ill health. This was a better option for me than ill health retirement as it means I could still go back to work if I feel up to it in the future. I used to teach 3 days a week. I now work as a teaching assistant 5 mornings a week which pays loads less but doesn't eat into all my evenings and weekends like teaching did. I do also claim PIP which definitely helps xxx

Member

Re: Triple negative secondaries/ recurrences

Hi Blanna, welcome to the forum. It's the club no one wants to be in but it's a really great place to ask questions, get support or even just have a rant! 

I have Lymphodeoma too - one of my chemo's seemed to set it off and I got it in both legs as well as my left arm! It has settled down a lot now bit I remember being in agony just trying to get my shoes on. Make sure you get seen by the lymphodeoma nurses as they can do lots to help manage your symptoms. I hope things settle down for you soon and you get some good results from your treatment. 

 

Ellie xxx

Member

Re: Triple negative secondaries/ recurrences

Hi all,

Im in that weird place of being secondary/ecurence TNBC, but only in my neck area and not spread to any vitals or bones at this time. It was really scarey for a while as I only had two small raised nodes in my neck in February, when I had the FNB (fine needle biopsy) the cancer seemed to explode around my neck, I ended up with severe lymphedema and in a lot of pain as well as restricted movement  to my left side. I am currently on a lot of pain meds and Im on my week break from my weekly infustions and Ive found a lot of my mobility  has come back, Im hoping something is happening and now I am able to sleep more comfortable, find myself getting more angry with everything around me. Im off work at the moment and Im not sure if I want to go back. 

 

xx

Member

Re: Triple negative secondaries/ recurrences

Hiya Patricia.
Welcome . If you do decide to retire you can Claim pip which is available to all with secondaries. It's not means tested and could make life a little easier financial for you.
A lot of ladies here like myself have it. There are a lot of threads available for info.
Hugs xx
Member

Re: Triple negative secondaries/ recurrences

Downbutnotout thankyou for your post which has really helped me because i just dont think im gonna be able to cope with the stress of work whilst having treatment, especially as the treatment will probably be for the rest of my life. I am frightened by like you i am sure i will adjust to the reduced income and imbrace my free time to make friends and get a life. xx
Member

Re: Triple negative secondaries/ recurrences

Hi Patricia

 

Sorry you find yourself in this awful situation.

 

Just from my experience, once I started on my recurrence treatment it hit my neutrophils so hard that I avoided work because of the high risk of infection. I went back full time after reaching NED but stayed away from the office when I had to resume treatment again. After having much time off work - though my employers were very supportive and didn't pressure me at all - I decided I wanted retire and have some time to be free of the worries about work and to do things I want to do. It was hard initially but I'm so glad I did it now. I figured as long as I had enough money to get by it was the best option for me.

 

My pension service provided me with an estimate, which helped with the decision making.

 

Good luck with whatever you decide to do.

X

 

 

Member

Re: Triple negative secondaries/ recurrences

Hello Lovely ladies 

 

Can i ask whether any of you have managed to work with sbc and its treatment?   I have only just returned to work mid February 2016 after ten months absence having treatment for primary cancer so i am devastated having now been told i have cancer again in my axilla scar and need treatment and fearing the worst have asked for retirement but giving up job and income very hard.

 

Any comments will be so welcome xxx

Member

Re: Triple negative secondaries/ recurrences

Hi bazcas - although I felt very well when I was on Gem Carbo it really hammered my cell counts. I was regularly neutropenic which meant I had a lot of delays, dose reduction and cancelled day 8 Gemcitabines. Also, I had to have a few blood transfusions and one platelet transfusion. I only had daily GCSF injections when in hospital with an infection. Yes, the blood cell boosting injections do cause quite a bit of pain. I used to get awful neck and bone pain when I had Neulasta with FEC-T - in fact, I'd forgotten about the neck pain till you just mentioned it.

 

I hope you can get something to keep the pain under control. Gem Carbo was a great treatment for me as I ended up NED for a while so I hope it has that effect for you.

 

Best of luck with everything.

X

Member

Re: Triple negative secondaries/ recurrences

Hi I am currently on Gem/Carbo for mets to Liver and Spine  and have two more sessions remaining out of 6. Last month I had to have 1 xplatelet tranfsions and 2x blood transfusions, Since then my Nutrophils have plummeted and I have now started on G-CFLS injections to pomote my bone marrow. After having my 1st injection yesterday I was in agony with neck pains and I have to say I do not feel like myself. But hey ho I know I have to have them to enable me to finish the chemo. Has anyone else had this poblem, I will discuss pain relief with my nurse on Thursday.

 

Good luck to akk

 

Suze x

Member

Re: Triple negative secondaries/ recurrences

Hi Patricia11 - my TNBC recurrence happened in 2014. The surgeries to remove it spread it in my skin and I was then told it is incurable. For my primary treatment I had FEC-T chemo and rads. My first chemo for the recurrence was Carboplatin and Gemcitabine - I got to NED (no evidence of disease) with this treatment. Although it came back I'm still well. I was given Capecitabine next but I'm one of the few people who had an intolerance to it so that was scrapped before I'd finished the first cycle. However, many ladies do very well with that, finding it an easier treatment (it's an oral chemo) and many have been kept stable for years on it. After that I was put on Eribulin and have had that for 7 months.

 

Don't think there are no options but if you're not happy with what you're told I would recommend a second opinion at a different hospital. My former onc didn't want to give me systemic treatment and wrote me off, so I know how you feel.

 

Also, there are many clinical trials at the moment for TNBC - check out the Cancer Research website for clinical trials. There's an immunotherapy one (being run at The Christie, Manchester and in London) which you may be eligible for: http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-pembrolizumab-for-trip... If you Google (though we don't generally recommend that!) there are some very inspiring stories about it for other cancers.

 

It's a very difficult time for you but, as others have said, once you have a treatment plan it gives you a focus and becomes less stressful. Don't give up. We're here to help you.

 

Wishing you the best.

X

Member

Re: Triple negative secondaries/ recurrences

Ellie and the rest of you loving ladies that you so much as your posts have helped me so much and given me hope when i had none before.

 

I feel calm and stronger and it is only because i feel connected to you all as we are sharing the same journey.

 

Bless you all and sending megga hugs and kisses  

 

I have applied to join the closed thread so hopefully we can chat further on their if i am approved.

 

xxxxx

Member

Re: Triple negative secondaries/ recurrences

Hi Patricia,
Welcome to the forum. I think the surgeon you saw may have meant you couldn't have the same chemo as you've already had it and it clearly hasn't knocked the cancer on the head properly. Hopefully they explained that tnbc doesn't respond to hormone treatments or herceptin so this could also be what they were referring to? However there are lots of other types of chemo - I'm on my fourth chemo combination!. Your oncologist will be able to explain it muuch better so I hope you get to see them soon. Go in armed with lots of questions. If it's not been made clear why they can't operate do ask as I would be as. Confused as you are in the same situation.
It's a lot to take in but the ladies on here are lovely and really helpful. Do have a look through the different threads on here and never be afraid to ask.
Lots of love Ellie xxx
Member

Re: Triple negative secondaries/ recurrences

Thank you to you lovely ladies for welcoming me to your tread.   It all happened very quickly for me as was first dx with HER2 breast cancer and had the full treatment which finished January then having herceptin and all looked great. I started back to work in February and had a new kitchen put in and i was feeling so positive about the future. I just got a clear mammogram and a doctor examied me for lumps and gave me the all clear. Then less than a month ago i got just a couple of stringy lumps along my scar line.

 

I was dx with TN BC Thursday and the doctor who was a breast surgeon said this cancer wont respond to chemo, I cant have rads as had in same place before and it is not operable.

 

I am now having a scan but am terrified they wont offer me any treatment.  Please tell me was you told your TNBC wouldnt respond to chemo when you were first dx.

 

Any comments please as i need to have some hope i can at least try treatment to prolong my life xxx

Community Champion

Re: Triple negative secondaries/ recurrences

Hello Patricia welcome

Redridinghood has posted to Stresshead in the Treatments and Medical issues board how to access the private group. It is quite good information it was easy when I first joined but it has changed since. Just scroll down the 1st page and you will find it 

I hope this helps xx

 

Thankyou Mo you are a good un (((hugs)))

Member

Re: Triple negative secondaries/ recurrences

Carolyn thank you so much for your message and please tell me how to apply to the moderator to join the closed group because i truly need support with this. xxxx
Member

Re: Triple negative secondaries/ recurrences

Hiya Patricia and welcome to the family. It's a very scary time when you get dx with more than you had expected!
I'm sure once you have a treatment plan you will relax and focus. The ladies on this thread Will have a lot of experience of tn and stay with us for kindness and sometimes a bit of fun and humour.
We have a secondary closed forum which you have to apply to the moderators to join but we have a book club; tv reviewing threads and lots of things going on. Just started a thread for healthy recipes so plenty to be able to be involved with.
Hugs xxxx
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies 

 

I was dx with HER2 breast cancer in April 2015 and i had mx, chemo and rads which finished in January 2016.   I then noticed a stringy bumpy thing growing along my scar line in my armpit and i thought it was scar tissue but yesterday i was told the results of a biopsy and it is triple negitive b cancer. The doctor said it cannot be operated on because of its location which i dont understand, it wont respond to chemo as its back so soon after chemo finished in January and i cant have rads again. So sounds like they written me off!!

 

I am due to have a scan on Tuesday to see if spread further

 

I am numb with shock and would welcome any comments please

 

I would love to join you lovely group of ladies xxxx

Member

Re: Triple negative secondaries/ recurrences

Hi Kittycat40, it seems that we have  a lot in common - unfortunately!!. It would be great to contact you directly - like you I am always researching new things. My onc mentioend that if ebrulin didint work he would refer me to an immunotherapy professor who runs a lot of trials in breast cancer. He did say that if immunotherapy is going to work it could work better for TNBC. I have  also had the tumoor tested for genetic mutations.

All the best

T.

Member

Re: Triple negative secondaries/ recurrences

Hiya mariposa
Welcome to our family of support and help. I'm afraid that I'm a newbie to this and have no experience of these trials but hopefully by you posting here ..someone will have and be able to give you some information.
Chemo permanently sounds so savage and it would be nice for you to be able to trial another option.
Please keep visiting us here ..just for support and kind thoughts.
Hugs xx
Member

Re: Triple negative secondaries/ recurrences

Hi like some of you on this forum my cancer changed to TNBC after 3 years. I was initially diagnosed in 2010 with mets to bone,liver and lungs. Been through hormone treatment, then more chemo after a biopsy of a liver met done after a resection revealed a change of status. Now on ebrulin. Has anyone been offered immunotherapy trials? My onc says it's possible to stay on ebrulin indefinitely which is great for as long as it works but having less toxic treatments would be the goal. Ebrulin is working well so far.
Member

Re: Triple negative secondaries/ recurrences

Thanks for the replies ladies.  At least I am not crying every day now just every couple of days. I had to miss treatment last week because of low bloods so that didnt help. Hopefully will get the ok tomorrow.  Computers are great for getting in touch with people like yourselves but yeah I know I shouldnt go delving into the dark hole of statistics.  Hope your all doing ok. x  

 

Member

Re: Triple negative secondaries/ recurrences

Hi debjc,
It is a huge shock so be kind to yourself and give yourself time to adjust. I had about a month to get my head around my primary diagnosis before finding it had spread to my liver! You do find a 'new normal' as I call it, but it took me a while to greive for my old life. Sorry if that sounds a bit melodramatic but it's the best way I can describe it!
Also don't Google stats - they are based on old data and treatments are improving all the time.
How are all you other Gemcarbo ladies doing?

Ellie xxx
Member

Re: Triple negative secondaries/ recurrences

Hiya dejbc
Sorry to hear your devasting news and it will have hit you like a steam roller. There are some lovely ladies here which will give you some lovely support.
I think in a perfect world we think we get the primary bc ..have the op, chemo and rads etc and then like the measles or something it goes away but no such luck.
I am useless at medical stuff but can send you hugs and hope u get the right treatment asap.
Hugs xx
Member

Re: Triple negative secondaries/ recurrences

Need to hear some positive outcomes from you ladies.  Had tnbc last year for which had chemo a mammaplast and rad.  Had a whole month thinking all ok only to be told about two months ago it had gone into my lungs.  Absolutely devastated.  Have started Gemcarbo.  Try not to look at stats but when your at home all day you cant help it.  Please give me some positive feedback. 

 

Member

Re: Triple negative secondaries/ recurrences

Hi worried-sick

I'm sorry to hear you're having a hard time with Gem-Carbo. With hindsight, my first cycle did hit quite hard in terms of fatigue. The only sickness I had was from the antisickness I was given before the chemo dose. After changing antisickness I was okay and from the 2nd cycle onwards I had a reduced dose of the Gem-Carbo and only had mild fatigue for a couple of days each cycle. The reduced dose still got me to NED, so perhaps your onc can do that for you too?

X

Member

Re: Triple negative secondaries/ recurrences

Hi Ellie thank you for your reply I have felt so poorly this week on gem carbo it's caused me such a bad upset tummy then no energy and weakness been in bed all week and now day 8 top up tomorrow I've got no idea why I have this. Onco told me it was much kinder than FEC T so I was pleased and never asked enough questions.
Member

Re: Triple negative secondaries/ recurrences

Thanks Ellie. Your comments are very reassuring I couldn't imagine having days where I hardly think about this so it's nice to hear that you do. I saw the oncologist today and I pointed out 2 lumps on my neck to him and he thinks the cancer is in the lymph nodes there. This bloody disease is horrendous!! I think it's just started to sink in for me now. I haven't really cried yet but today the bc nurse asked me how I felt and I burst into tears. Couldn't speak for crying. I don't know what happened! People are asking me that question all the time and I just say I'm feeling ok. Xxx
Member

Re: Triple negative secondaries/ recurrences

Hi everyone,

 

I didn't lose my hair on gem carbo. In fact it grew back after I'd lost it on a previous chemo! It does hammer your bloods and I had to take a lot of anti-sickness with it (it used to strike suddenly about 5-6 days after the infusion so if you feel even vaguely queasy start popping pills!!). Hopefully it won't affect you this way but forewarned is forearmed. Once I had the extra tablets sorted I was fine and found it very manageable. 

Also wanted to reassure the newcomers that things to get more normal again. I had secondary diagnosis shortly after my primary back in May 14. I thought that there wouldn't be a day when it wasn't hanging over me. I will admit there have been tough times but there are also days when I hardly think about it or at least only think about it in practical terms such as juggling appointments. Getting underway with treatment definitely helps.

Ellie xxx

Member

Re: Triple negative secondaries/ recurrences

Hi worried-sick

Only about 1% of people lose their hair with Gem-Carbo but unfortunately I was that one! It had taken me 18 months to get it to shoulder length following FEC-T. All the other people I know who've had Gem-Carbo have kept theirs, so fingers crossed you will too.

X

Member

Re: Triple negative secondaries/ recurrences

Hi Lainieg,
Thank you for your response. I'm pleased that it isn't cancer that you have, is there something that can be done for your limited field vision.

I hope your trial goes well, I too suffered on Fec-T.

Pippie 😊
Member

Re: Triple negative secondaries/ recurrences

Hi ladies. I saw my onc on Thurs and I'm going to take part in a drugs trial for a PARP inhibitor called Niraparib which is apparently looking promising Has anyone on here heard of this? I might not get the drug tho as 1 in 3 who take part get chemo so that they can be compared. The good thing tho is the amount of monitoring. I'll have a ct or mri every 6 weeks. I've also been told that the chemo is easier than fec -.t. So glad as I landed in hospital after every session of that awful stuff. I've been told I won't lose my hair and I can even work. I'm really scared as are all of you. Being told it's incurable is the most terrifying thing. I'm glad to hear of people living for years tho Kittycat40. I didn't know that and I've been expecting much less. Xxx
Pippie my eye condition is an optic neuropathy in both eyes. It's limited my field of vision but my eyes have been scanned several times and I've even had mri of my brain and eye sockets and I've been assured it's not the cancer. That could change of course and going by my luck over the last few years I wouldn't be surprised. Xxx
Hope all you ladies are as well as you can be xxxx
Member

Re: Triple negative secondaries/ recurrences

Downbutnotout thank you for your reply you have made me feel better about gem carbo and if it shrinks it or better still then it's all worth it. I felt so poorly on FEC-T . did you lose your hair with gem carbo?
My oncologist said i shouldn't totally lose my hair but it might just thin out. My hair has taken 8 months to come back after FEC T
Member

Re: Triple negative secondaries/ recurrences

Hi worried-sick - I'm TN too and had Gem-Carbo chemo after getting my incurable diagnosis. Despite delays, reduced dose and cancelled treatments (because of low neutrophils) I got to NED (no evidence of disease) for a few months. I also found Gem-Carbo much easier than FEC-T - felt well and could keep a good level of fitness.

 

Best of luck with everything. It's such a horrid time when first told it's incurable.

X

Member

Re: Triple negative secondaries/ recurrences

Hi Sarah any cancer spread (mets) is incurable but most are treatable. Please say yes to anything going is my advice. There are quite a few treatments out there and not just chemo. Ask your onc about surgery and radio as well. Everyone's prognosis (time left) is different depending on how you respond to treatment. There are lots of positive stories on the forum and some people live for many years. It is very hard to get your head around. I find some days are easier to cope than others. All the very best to you big hugs xx

Member

Re: Triple negative secondaries/ recurrences

Hi Lainieg,

 

i was was wondering about your eye condition, did the find anything in your eye.  I have been diagnoised with eye mets in Dec 2015 and looking for anyone else who may also have this condition, which I am told is rare.  I did post a week ago but haven't found anyone else. 

 

I was diagnosed  with with mets in spine, ribs and lung, with a side order of athritis in neck and cataract in both eyes in Jan 2014.

 

 

Best wishes 

Pippie

Member

Re: Triple negative secondaries/ recurrences

Hello lovely ladies I am so sorry to see you having to join us on here. It's a very scary and worrying thing to go through. I have secondaries in bones, pleura (fluid around lung) and liver. I have new liver mets so am on Eribulin chemo at the moment. I don't come on here as often as I probably should but please message me if you need support or would like to ask me anything. I am no expert but was originally diagnosed in 2007 so have picked up quite a lot of information!  I have had various treatments as was originally hormone positive but with massive thanks to Nicky on here that I had my receptor status checked and found I am now triple negative. No wonder none of the treatments were working!! I have also had SIRT (radiation beads in liver). They appear to have possibly kept the original tumours in the liver stable apart from 1 which had grown a little but of course they don't work on any new ones. I am always reading and looking into any other options. The Oncs don't always tell you what there is out there. They just seem to follow the usual procedure. I find it helps me being a bit in control of my own illness. Going to be looking into more things soon so if I find anything I will post on here. 

 

I am am using a mindfulness app Headspace which seems to help.  My motto is to try to not to let the fear and sadness etc overshadow today while I am here and living. Not always easy to do but I try to! 

 

Love and best wishes to you all xxxx