3rd Treatment Line failed. Starting Trodelvy

Yes. It was me being stupid! My brain is struggling to navigate this new forum! So sorry. Hopefully posting in the right place now!……Hi everyone. Unless I am being really stupid, this triple negative secondary area is one single thread rather than being able to start new topics or search for them. Is that right? Either way, I am very glad to have a group away from the hormone receptive people. Sadly, I started off as one but after treatment 1 (palbociclib and fulvestrant) failed after around 18 months and 2nd line (exemestane and everolimus) not working at all, it was discovered I had transitioned to triple negative. I started nab paclitaxel in August and was happy to have recently been able to start pembrolizumab. I had my first dose three weeks ago. On 19th November, I had my routine scan and got the result yesterday. Nab pac is not working. I have more liver tumours and the ones I had are bigger. My oncologist advised that Trodelvy was my next best option. Last November, I was being told that the one spinal tumour I had was showing more improvement. This November, I face having raced through treatment lines and become triple negative, developing mets in my pelvis and multiple mets in my liver. I have basically had no treatment working for between 8 and 12 months, depending on when I changed fro ER+ to TN (biopsies have previously not been possible). I am beyond terrified and feel utterly crushed by yet another setback. I read all about Trodelvy on the BCN website and how it “could give more months for people to spend with their loved ones”. Of course, I am so very grateful for all the treatment options available but months? Is this where I am now? I am 59 and in no way ready to contemplate the end of my life. How do you cram what should have been years, the years in which you carefreely planned to grow old with your loved ones, with a husband with whom you are so happy and were so, previously, full of dreams and plans, into a few months? And Trodelvy fills me with dread. It sounds such a harsh drug My fatigue is already pretty debilitating and the thought of feeling even worse is very difficult to imagine. I feel like my world is shrinking before my eyes. is there anyone who has been in a similar situation, especially with the change from hormone positive to triple negative? Any uplifting, positive experiences of Trodelvy would be so welcome. I do apologise for the outpouring. I am feeling so raw and just needed to reach out to people who just ‘know’. My love to you all xxx PS I asked my oncologist “is this really bad?” He replied that it was “disappointing” that the treatment hadn’t worked but not before looking at the floor. I can’t help but think that look possibly said more than his words.

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Hello @Hattie1204
My heart goes out to you.
I can’t give you any information about Trodolvy but feel I should share with you an alternative route that could possibly help along with your current plan. Maybe you have already come across it. 2 years ago I had primary breast cancer which was triple negative. When I was diagnosed I googled Allan Taylor of Middlesbrough, he is the dad of a friend who survived terminal cancer for over 10 years with an alkaline diet. His information of what he did can be found at

I also read a book called Breaking The Cancer Code by Geronimo Rubio and Carolyn Gross which taught me a lot
After I had been told I had had a full pathological response to the chemo and was clear I came across Chris Wark, Square One plan and on Facebook Melissa Merchant cancer coach. I now live my life trying to follow the path I learned through these resources which all back each other up.

I do hope there will be something within these that can help you combat this.

Sending lots of love and positive thoughts :two_hearts:

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Hello Hattie
I also went from being hormone receptor positive to triple negative. I started on Abraxane and immunotherapy but had a serious reaction to the immuno drug unfortunately. I had to stop taking it and the Abraxane stopped working after about 8 months.
I am now on Trodelvy. As you know, it’s a new treatment so clinicians have limited experience of it in clinic. I am trying not to be discouraged by mention of ‘months’ extension to life spans and hope for the best. The good news also is that there are other drugs of this type in the pipeline.
Trodelvy has not been a walk in the park but I’ve coped and have a pretty good quality of life. I’m still working part-time (helps me) and doing quite a bit of social stuff. I’m exercising and doing yoga. None of that may work for you but it is helping me. I enjoy food.
And I wanted to mention it all because it may give you hope that life on Trodelvy can be lived and enjoyed. I did have very bad diarrhoea and neutropenia at first but doctors reduced the dose by 25% and that had helped. I still have stomach issues but can control usually within hours.
I’ve had a scan and it is doings its stuff and reducing the size of my tumours.
Your post really spoke to me. I am 61 and want to stay around! I wish you all the very best and will be thinking of you. I hope you Trodelvy does it’s good stuff for you.
X

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Thank you for taking the time to send me this information and I do apologise for the tardy response. I have been metaphorically, interspersed with literally, hiding under the duvet for the last few days. I have heard of Chris Wark but not of the others so I will look into some complementary avenues to support my new treatment regime. Listening to Kris Hallenga has also prompted me to look at integrative doctors who might have something to offer. I am, as you can imagine, extremely open to finding things that might help. Thank you again for replying to my post. I really appreciate it. My best wishes to you x

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Hi IloveEd
Thank you for your uplifting message. The last week has been really tough and it made me feel a little less alone. Having a change from hormone receptor positive to triple negative feels such bad luck in an already very unlucky situation. I’m so glad that Trodelvy is doing its thing for you and will approach Wednesday with the hope it will be the same for me. Are there other drugs like this in the pipeline? I really felt like I was running out of options so this gives me a little more hope that I am not in the last chance saloon. The potential side effects really worried me so thank you for comforting me that all this can be managed. I just want to live my life; not just exist feeling terrible. Please do keep in touch and let me know how you are getting on. I wish you all the absolute best going forward. Very much love xxx

My fingers will be crossed for you Hattie. Really hope things go well for you. There was a recent article in the Economist which gave an upbeat assessment of high levels of investment in ADC drugs (of which Trodelvy is one) at the moment. Let’s hope it pays off! Love Jo

Hi @Hattie1204

Sorry you find yourself in this situation and hoping Trodelvy is effective and bearable for you. It does seem to be a bit of a lottery finding a treatment that satisfies on both counts.

I am a fellow mTBNCer, with mets in my liver. I started Pembrolizumab with NAB-Paclitaxel in May of this year. Tolerated it really well until September, when I had a major immunotherapy related adverse event from it. Basically my immune system caused an acute kidney injury and destroyed my thyroid. I had to go on high dose steroids to give my kidneys time to recover. As I have attempted to wean off the steroids, it’s become obvious it has also damaged my lungs (pneumonitis). So I have been left with permanent damage to kidneys, lungs and thyroid. Meanwhile, scans showed an excellent effect on the tumours but of course I have had to stop the treatment as more of it would likely lead to more damage.

My next line of treatment is Trodelvy, if my kidneys can recover enough to tolerate it. At the moment I am out of all treatment whilst I continue to recover from what happened In September and benefit from the reduction I achieved. Like you, I am anxious about the widely reported side effects of Trodelvy and not looking forward to a third summer in a row of chemo (I had adjuvant EC and Paclitaxel in 2022 before anyone realised it had spread to my liver).

Wishing you all the best and looking forward to hearing how it is for you.

Hi Coddfish
Thank you so much for holding your hand out to me. I’m so sorry that the Pembro and nab-p went awry in September, especially after working so well. It does sound like you have had a very rough time with it all and I do very much hope your kidneys can recover from the ordeal. I didn’t get off the ground at all with it so yes; you are right. It does seem a bit of a lottery. Let’s hope that Trodelvy is the one for us. I seem to be doing ok, side effects wise, since my first treatment last week so just gearing up for more on Wednesday, I have been very careful in taking all the side effects meds, though. I hate having to take so much in addition to chemo (I am also on MST and pregabalin for nerve pain) but I won’t take any chances. My fatigue is definitely getting worse and I am keeping an eye on my hands and feet as I am really starting to worry that the neuropathy is getting worse. Also the tinnitus. Please do let me know how you are getting on with the Trodelvy. I, for one, am placing a huge amount of hope in it. My love and best wishes xxx

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Thanks @Hattie1204
It sounds like the first dose hasn’t been too bad for you and I hope side effects don’t build up too much for you with the day 8 infusion.
I am not on it yet - they will scan me in January to see what has happened since my MRI in October. Then it will be either more watch and wait, Trodelvy (if my kidneys are well enough), or finding something that isn’t processed through the kidneys. Will let you know if / when I am starting it.

Hi Hattie,

I hope the Trodelvy isn’t as bad as you feared and you have a good quality of life!
I am in a similar situation. I am just about to start this drug. Fingers crossed it works and isn’t too bad. I am 35 and have felt a bit raw about the situation too, to put it mildly and have spent time planning in fun things. I really just want to be well enough to enjoy them.

Wishing you lots of support and successful treatment, so you can enjoy your time with your husband. That’s all I we can do…enjoy and appreciate the time we do have with them. I hope it’s all going well.

x

I had Trodelvy last year, July - October. It was harsh with diarrhoea being the worst effect but after cycle 3 my oncologist changed the anti emetic meds and reduced the dose and things were much better. I realise now I should have made more of a fuss about how bad it was, but just assumed it was normal. My digestive system is more or less back to normal now. My ALP numbers came right down into the low normal range after 2 cycles but last week’s blood test showed they are beginning to rise again.
Unfortunately I wasn’t good Nov, Dec and eventually it was discovered that something had destroyed my pituitary gland, so the thyroid and adrenal plants weren’t getting any messages. My problem was low sodium but I now take a small dose of steroids and a tiny amount of thyroid stuff and I feel really well and have my life back for a while. I had assumed it was the Trodelvy but I see in this thread that someone else had the same problem after nab-paclitaxel, with I took Oct 22 - Feb 23. I’m seeing my consultant 20th Feb for the latest scan results and the way forward but I have several holidays booked between now and June so I don’t anticipate any treatment just yet. He mentioned Erubilin as being the next chemo but I’m going to ask about more Trodelvy as it worked so well and we have the dosage and side effects worked out now. I have a feeling he’ll say no but the reason will be interesting. I had 6 cycles and see on a parallel thread here that someone took it for a year and the Macmillan info states you take it till you can’t tolerate it any more. Sorry, I’ve gone on rather but hope it might be helpful. All the best with the treatments to everyone on this. Xx

Hi Claire

Thank you so much for being in touch. I’m so sorry to know that you are going through a similar situation. I started Trodelvy in December. Cycle 1 was interrupted as my liver enzymes were too high. However, cycles 2 and 3 have gone to schedule and I am due to start cycle 4 tomorrow. At the end of the month, I will have a scan to see what effect it is having on my disease. I would say the side effects, for me, are not pleasant (mainly bouts of diarrhoea) but I have found them manageable, thanks to the side effects meds I have been given. Unfortunately, I have found that this usually hits me on the week of not having treatment. Typical! Nausea hits at times but, again, the meds really help with that (domperidone). My sleep has definitely been interrupted but this could well be a combination of treatment and my head whizzing around like a washing machine. Energy levels vary quite a bit. On good days, I can still manage an 8 mile walk but, on less good days, I can struggle with 2 or 3 miles. Long walks were one of my favourite pastimes so I do find this frustrating. However, I am trying to approach life less like a sturdy oak and more like a willow. They bend in the breeze a little more easily.

I think planning fun things is essential, however small a thing it may be. I feel like I am in living in three month chunks at the moment, going from scan to scan, so I find it mentally hard to plan too far ahead. I am definitely feeling that my boundaries are very much closer than they were but I am putting things in the diary for the next couple of months with some comfort and confidence. We definitely need to feel that there is more to life than going to the hospital which, of course, there is. It’s just difficult to see that when we are in the midst of all the rawness, treatment side effects and uncertainty.

I am having counselling to deal with all the mental challenges of this situation. If you are feeling the need for this support, I would definitely speak to your consultant (or secondary breast care nurse, if you have one) who should be able to put you in touch with someone who can help. I have my sessions in the complimentary treatment building of a local hospice but I know that MacMillan and BUPA offer some free sessions too.

You are so young to be dealing with all of this, Claire, and my heart goes out to you. I wish you all the very best with your treatment and I hope, like me, you find the side effects manageable so you can go out and enjoy all things you have planned. Please do keep in touch and let me know how you are getting on.

With love
x

Had a stay of execution on Trodelvy as they have decided to reablate the lesions in my liver. Hope everyone on this drug is coping with it- I am really unsure whether I want to take it when the time comes.