Hi,
Has anyone in the UK been able to get access to Sacituzumab Govitecan (Trodelvy) for metastatic TNBC yet? Maybe through expanded access/ compassionate use? Trying to find a way to get it while we wait for the UK to approve it. It was approved in the US in Apr-2020 but still not available here. Thanks
Any questions you have as you go along, please just ask. Would love to be able to help x Good for you for sticking with the cold cap. I gave up after me very first chemo! The first infusion is over 3 hours just to check for any adverse reaction but I now get it over an hour each time, much quicker :-)
Thanks Run4it . I am bound to have many questions!
I got a call from the nurse today saying the bloods taken on Monday showed neutrophils were low and so they want to repeat bloods on Friday. If they're still low they will give me the pegfilgrastim with a view to starting the Trodelvy on Monday. I can guarantee it will still be low. Not sure why they dont just give me the injection rather than repeating bloods but hey ho they know best.
Hello, I was diagnosed with TNBC January 2021. Had all scans and signed consent forms and was due to start treatment end of February 2021. Day before treatment, (Tuesday) I received a call from the hospital “they booked a scan for me to attend the following day (day of treatment) as the PET Scan I had 2 weeks previously had picked up a shadow in my liver. They also said there was something in the other breast and I was to attend the breast clinic to have a biopsy. My treatment was now rescheduled to start the Friday. I went for the scan and on Thursday day before treatment, I received a called to attend the hospital now and can I bring someone with me. I was petrified. Lucky my sister who is a Doctor was available. At the appointment, I saw a senior consultant and they explained in doctors language that my cancer is now incurable, at that point my positive attitude deflated in seconds. The first line of treatment wouldn’t work for my type of cancer, that’s the AC. They said they had sent my bloods to be tested for PDL1 and takes 5 days, if the results were yes, I would be put on the immunotherapy and chemotherapy trail. They booked an appointment for me to attend clinic the following week. Following week I attended, I was told the results wasn’t available and after 4 hours they said they would call, but didn’t. I had the worst weekend feeling sorry for myself. On the Monday I called my CNS and she said the results were positive so I was eligible for the trail, and the following week, I went for various scans, after 3 weeks they said my neutrophils were low by point 1 and I wasn’t acceptable for the trail. This is now 3 months me knowing I have cancer. Tumours we’re going rapidly before they were a size of a small pea, now a good size conker. I started on immunotherapy and Abraxane. The day of treatment, after signing a new consent form, I waited 4 hours and was called back to the consultant office she said she had book me in on Friday (3 days time) to have a lymph node removed from my right breast, even though she said 4 hours ago, (“results no cancer detected”) I said so does this mean my treatment won’t start today? She said no, I said so when, she said probably Monday, I said Monday? After having surgery, she said I can check. I said so if I said treatment today, what will happen? She said the treatment will string the tumours, so I said well it’s doing it’s job. I called my sister she was fuming with her sister head on, and realised and put her Doctors head on and said what do you want to do? I said start my chemotherapy treatment today, she said well tell them that. What really upset me was this was organised whilst I was waiting on the chemotherapy ward even the surgeon rang me for a pre op chat. I was on the ward from 10:30 left at 19:40 because chemotherapy treatment had to be made and was a 4 hour wait. I watched every drop that went into my veins. I received a call from my CNS for 6 weeks and had no follow up appointments and thought, this can’t be right. I texted her and arranged to see her before my treatment the following day. She wasn’t sure if I was under the trail team or clinic team. Then after a few days, told me I was under the clinic team. I was upset with the whole situation but decided to concentrate on me. 3 months after starting treatment, I had a Ct scan and was told the tumours had half in size and there was no trace in the liver. I was so happy. I continued with the treatment then in July I started feeling unwell, went off food, my feet started swelling, I developed neuropathy in my feet and my weight dropped about 24 pounds. I had a scan booked for mid August and went for a follow up appointment 2 weeks later in clinic and was told the results wasn’t back. 4 weeks later end of September, I was told the treatment had stopped working and the tumours had grown back, I was devastated. They said I would be going on the first line of treat which they said wouldn’t work for my type of cancer in February. So after 7 months of immunotherapy and Abraxane, I started 4 months of AC chemotherapy treatment. 11 months of chemotherapy took a toll on my body, I looked like a monster, I stopped the AC treatment in January this year 2022. I had 2 follow up scans with the last one in mid April. I mention to my oncologist that the tumours seems to have grown, she said there was no sign of that on the scan and would do a follow up scan in 8/9 weeks time. By early June , I had a counselling session and just mention it. She said to contact your CNS which I did. She said she would email the team. I was told they arranged an ultrasound scan and I had this the following week, 10 days later. The radiologist said that the tumours had grown and asked when was my next treatment. I said I wasn’t on any treatment, my last treatment was I. January 6 months ago. The following week I had to have a bone scan and a follow up cT scan and results for the bone was good, (just old age) the Ct results showed the tumours had grown sufficiently and it was back in the liver. I have now started Trodelvy first treatment this week. Praying hard this will work. Starting my fight agin. Sorry for the long message and hope it doesn’t bore you. X
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