Trple neg mets bones and lungs

Suzi14

Hi, my BC is now triple neg, mets in bones and lungs,  have had 15 rounds of chemo which was to be ongoing but canceled this week due to ca markers jumping from 72 to 360, anybody else had such a jump, l dont know what if any my next treatment options are. Having a very anxious week waiting for my next round of scans results to try amd find out what's happened.  

gumnut

Dear @Suzi14
It might be worthwhile joining the Metastatic Breast Cancer group? I belong to that group and it is a great resource with a group of lovely ladies who support each other and can provide some very useful and relevant information.
My MBC is HER2+ so different to yours and I can't really offer any useful information but there will be ladies in our group who may be able to help? ( @Lisa1407 )

@Mez_BCNA are you able to please point @Suzi14 in the right direction and enable her to join that group?

Best wishes 

[Deleted User]

Hi, I also have TNBC after my initial cancer being estrogen positive (4yrs ago). It’s now in my bones, 5 tumours. I did have a significant tumour marker jump, up to about 300 back in June 2021 and yes did all the CT and Pet scans to find out what was going on.  The waiting is the hardest, but now that I am down the track, it was critical because the oncologist consult their networks and try to work out the best available treatment. 

I went on oral chemo first - Capecitabine - and that did help reduce the markers initially.  But then I was able to access Trodelvy, which is a new drug for TNBC and apparently has amazing results!   So ask your onco about Trodelvy.  

For both, the side effects are manageable.  Capecitabine was definitely easier, ver time convenient as no hospitals and IV. Check out the other chat on Capecitabine; it can have some yukky side effects. 

Trodelvy is early days but definitely harsher - nausea, fatigue, lost my hair. 

But if it works! 🤞

arpie

Sorry to hear that, @Suzi14 xx

An announcement has just been made for a Webcast on 17th Feb, re Triple Negative .... you can see the details here & submit questions (and it shows the different times it will be 'shown' for the various states.)

You may be interested in attending this Zoom Chat on Triple Negative BC - click on the link below for the different 'State Times' & more info:

https://onlinenetwork.bcna.org.au/discussion/24216/ask-the-expert-triple-negative-early-breast-cancer-with-dr-nick-zdenkowski#latest

take care xx

Silba

Hi
Sorry @Suzi14 about your news , but you're not alone , my new cancer is also triple negative, had all my scans and having surgery this coming thursday to remove all the lymph nodes on my left side ,there is also a  new little spot in my lung, which apparently oral chemo should control (fingers crossed ) I have mets in my hip which is hormone positive, but that is apparently holding for now.

    You would think that dealing with one would be enough but hey let's throw in another one...so after bilateral mastectomy, chemo radio and a hip replacement , more surgery , oral chemo ( not looking forward to that) but better than IV ,I hope.
    Worst thing, I'm now getting a phobia about needles , my one arm has had enough , the veins see a needle and they collapse.....which makes for several stabs at it and a cringe at the " it's just a little pinch"

  Hang in there, we have a lot to live for yet , just think we might see the end of COVID ....

Keep smiling.

noosa_blue150

hi Silba - have you discussed with your med staff about having a Portacath inserted?

ive had mine since day 1 as I knew after years of multiple colonoscopy procedures that my arm venous access not great

It doesn’t solve all,issues - only oncology staff can access ( if I need bloods taken I usually go in beforehand to oncology and they take bloods For that ). I had Recent surgery at a private hospital and despite asking beforehand about did they have anyone on staff with training nothing was arranged. Anaesthetist failed accessing right arm and used left arm (which was post lumpectomy and lymph nodes removed) but as that surgeon was also a breast and thyroid surgeon as well and she ok’d it I didn’t stress out. I also got him to put me out before he continued trying ( a previous anaesthetist at lumpectomy surgery had great trouble and it was quite painful ).

If I ever have a admission to,public hospital I’ll,make sure I can arrange access to oncology first for Portacath to be accessed first before admission elsewhere .
I think current thoughts are that whilst one shouldn’t access the surgery side on a routine basis that if there’s a emergency or a isolated surgery need that it won’t cause major issues .generally though most try and avoid your surgery side 

arpie

That's a bugger, @Silba - all the best for your surgery tomorrow 

take care xx

Suzi14

jgameau said:

Hi, I also have TNBC after my initial cancer being estrogen positive (4yrs ago). It’s now in my bones, 5 tumours. I did have a significant tumour marker jump, up to about 300 back in June 2021 and yes did all the CT and Pet scans to find out what was going on.  The waiting is the hardest, but now that I am down the track, it was critical because the oncologist consult their networks and try to work out the best available treatment. 

I went on oral chemo first - Capecitabine - and that did help reduce the markers initially.  But then I was able to access Trodelvy, which is a new drug for TNBC and apparently has amazing results!   So ask your onco about Trodelvy.  

For both, the side effects are manageable.  Capecitabine was definitely easier, ver time convenient as no hospitals and IV. Check out the other chat on Capecitabine; it can have some yukky side effects. 

Trodelvy is early days but definitely harsher - nausea, fatigue, lost my hair. 

But if it works! 🤞

Suzi14

Thankyou @jgameau
Will ask my Onc about Trodelvy( is it on PBS), lm currently on 3rd round of capecitabine but my markers are still going up at an alarming rate 1286 last lot of bloods, hopefully next week l can see a turnaround. My lung mets have spread now having a lot of fluid build up despite having pleurodesis in Nov21, and new mets in my liver as well as new lymph node activity and more new spots in my bones. Lol but hey my dr says we are not panicing yet she will dig deeper in her bag of tricks. Every day that l wake up and get moving is a good day. Thankyou everyone, there is so much support around 

jennyss

Dear @jgameau

from jennyss in Western NSW

[Deleted User]

Best of luck @Suzi14. Your tumour markers sound horrendous! And I understand how anxious you must be.  We are here for you to provide any support and info we can. 

Keep us posted.   xx 
I start Round 3 of Trodelvy tomorrow (⅓ way thru) and I feel like I am managing the side effects well.