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Triple negative secondaries/ recurrences

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
Community Champion

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.

Community Champion

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
Community Champion

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