Trodelvy

Hi Kev61

While I don't have any answer for you I noticed that you haven't had any replies yet so I thought I'd reply to you anyway.  I notice that you are a member of the breast cancer forum.  I suggest that you put your question into that forum as well as it's a busier forum than this one. 

Best wishes

Daisy53

Your wife’s medical team are the only people who can advise why it’s not operable. 

Trodelvy is a relatively new treatment (approved Aug 22) and its approval is specifically for treating unresectable triple negative advanced breast cancer after 2 or more other therapies have been tried. Unfortunately you won’t find too many other people who are being treated with it. TNBC isn’t homogenous and there are other treatments that are attempted prior to it if you are PD-L1 positive (as I am), or have a BRCA mutation. It’s my next line of treatment, should I need it, so I am pleased to hear your wife is finding it tolerable so far. Not sure Daisy’s suggestion to post on the breast cancer forum will help, as it’s not somewhere people with advanced TNBC typically post. I think I have replied to you before that I have come across people on Trodelvy on the Breast Cancer Now site, but I don’t know whether there are currently any active users there. 

Hi Kev61,

I have completed 1 cycle of this drug - the constipation was bad! I also suffered from fatigue and headaches. My understanding is that I stay on it for as long as it works or until the side effects are too much. Or maybe it is not working, I have a scan in a couple of months to check. 

I have also just had a liquid biopsy (blood test) sent to USA which can looks for new mutations or receptors on the cancer which could possibly lead to a clinical trial. 

I hope your wife continues to manage her symptoms, I am sure you are being a huge support for her but you must look after yourself as well. 

Hi cookie2 ,please could you tell me more about the blood test. Thank you

Hi, 

It is called Guardant360, run by an American company called Guardant Health. You have to be referred by your Oncologist and I paid for it although it has recently been on the news that the NHS are starting to use the test so it may be worth asking if you are eligible. 

Thank you Cookie2

Hello Kevin,I have the same problem.  I managed 6 and a half cycles of Trodelvy.  Unfortunately it only stabilised me for a while - I am going to start carboplatin in a few weeks as I need a break.  In my case, I experienced some stomach cramps, nausea and fatigue.  I did have a problem with a loose bowel in the first cycle, after the second dose.  But by the time I started the second cycle I had worked out how to manage my meds.  The worst -ongoing problem was fatigue.  Regarding the spread to the collar bone lymph nodes you should discuss this with the oncologists, but in my case those lymph nodes are considered to be too near major blood vessels and nerves.  However, I think for most Trodelvy has a good result, so there is every reason to be positive.