Here is my update on Trodelvy. I started on full dose Trodelvy in March and really suffered but not with the side effects I was warned about. No nausea or vomiting or diarrhoea just the opposite but I felt dreadful and very very fatigued. I then suffered from really bad ocular migraines, for a whole day I couldn’t get out of bed because any movement brought them on. I felt quite detached from reality. After reporting this to my oncologist she decided to reduce the dose by a quarter. I then got Covid and an infected PICC line together! Boy was I poorly. I then had 10 weeks off to regain my strength. That was wonderful and I felt nearly normal.
I have now restarted Trodelvy along with a new steroid regime. I felt fine so it was a bit of a blow to discover after the second dose my neutrophils were on the floor and the next dose was cancelled. I had filgastrim too. A bit worrying after just one cycle. I had about 2cms regrowth of hair but after dose two it all disappeared. I think my eyelashes are on their way out too as my eyes feel scratchy and blurry. Curiously my eyebrows are hanging on in there. Did cold cap 17 years ago but ended up with a wig anyway. It wasn’t worth the pain. It’s a bit more modern now but I’ve watched ladies who’ve used it and it really doesn’t seem to be that successful. There are some amazing wigs out there. I use a company called Simply Wigs and they are fantastic. I can’t tell you how many folk compliment me on my “hair”. No such thing as a bad hair day. If anybody has tips on using false eyelashes when you have none of your own I’d be grateful.
My first drug last year was Abraxane which gave me peripheral neuropathy. I’m not sure but I feel Trodelvy is making it worse which would be a real bummer. Anybody else experiencing peripheral neuropathy?
As this drug is the first specifically for TNBC I really want to give it a go. It’s weird to be looking forward to the scans in August after 3 cycles. I wonder if the side effect of mild headaches and the previous migraines is the drug seeking out rogue cells in my brain even though we’re told it doesn’t cross the blood brain barrier. I also get odd pains in my chest that come and go so that makes me think that’s where the tumours are being targeted. Wishful thinking? Who knows.
This is a bit of a ramble but as this is new I think we should share information about it and perhaps good news will persuade NICE sanction it. Considering they’re happy for us to have expensive generic drugs which probably won’t do much, it’s ridiculous to quibble over something that has been shown to be effective by trials in the States.
All the very best to you all.
Thank you so much for your message. That's remarkable as I am at exactly the same stage as you. This week is my first week off and about Wednesday I started to notice it coming out in handfuls on my comb. Prior to that my hair looked really good. I am due to start my next cycle this Wednesday and don't think I will use the cold cap as it is not worth the pain if it is not going to work. My daughter commented that may be the treatment is working as you have lost your hair! Let's hope so for both of us.
All the very best
i hope I don't add to your stresses by telling you my experience on Trodelvy. I also used the cold cap successfully on a year chemo (taxol then eribulin) I then started Trodelvy , no one could tell me if the cold cap. Wouldwork but I decided to give it a go as I'd been using it over a year. However on my week off , after my first cycle my hair fell out to the point I got my hair dresser to shave it off. I am now wearing a wig or some bandanas I got off Amazon. I must admit I didn't find it as traumatic when it happened to me on FEC 20 years ago. I think it's partly because I am older now (55) and also I was on palbo and that thinned my hair. I think I managed to detach myself mentally from it over these last few years. That said I am not saying it's easy. The only thing I am holding on to is is that it's the price to pay for the treatment working which I won't know until a scan in a couple of weeks when I know I'll be a complete stress ball.
Anyhow, not sure if this helps other than to know I've had a similar experience.
I have used the cold cap for various chemo but I have just started Trodelvy and am starting to lose my hair in spite of using the cold cap so assume it is not going to work which is a pity as I have been so lucky so far and haven't needed a wig.
I find the forums a bit confusing as I want to reply to ladies who respond to me but find I’m repeating myself. But hey I’m a natural chatterbox!
Back in 2007 when I was first diagnosed I saw a geneticist who wanted to know if I had black or Jewish blood in my background as TNBC was more common amongst those ladies. I could only answer that as far as I know I’m a thorough Anglo Saxon with some Celt and possibly Viking but on the other hand my Mum was born in Liverpool, a multicultural port city, so who knows.
I had standard breast cancer treatment back in the day which served me well as I was recurrence free for ten years. Since the secondaries developed I’ve had 4 cycles of Abraxane which did nothing except give me a load of side effects. So in September I started on Gemcitabine/Carboplatin for possibly 6 cycles. Which to my surprise is doing the biz. I’ve got so used to hearing that nothing much works for TNBC I didn’t hold out much hope. It does lay me low but I can grit my teeth and put up with it if it’s working.
I’m not at the Christie but near enough if there should be any trials in the future. I have to say that cancer treatment is developing at such a pace that you just don’t know what’s just around the corner. It’s what keeps me going.
Pleased you had a decent CT to spur you on. It makes a huge difference to your day, doesn’t it? Your day out sounded lovely ( nice part of the world) so I hope you felt a bit relaxed mentally when you got home.
Where are you with treatment? What have they put you on? From your scan, the treatment must be working?? When we’re you first diagnosed with BC. When I look at the list of people who typically get TNBC, I don’t fall into any category …….They really need to sort out treatments don’t they, because it’s so poor at the mo. Are you at the Christie?
the sun is out and so I’d better make the most of it.
hope you’re ok
With the latest news of my CT and the fact that I’ve had two extra weeks chemo free I’m feeling quite chipper. My mood has risen from doom laden to feeling a spark of hope has been reignited.
Right from the beginning my GP prescribed Zopiclone to help me sleep which works well and I don’t know how I’d managed without it. Even with it some nights it takes ages to drop off because I can’t think of anything but my cancer situation. What does one think about when your long term future has been snatched away from you? Even day dreaming of the next holiday has been taken away because of the Covid situation.
Thanks, lovemama for the links I’ll check them out. I can’t remember which academic papers I looked at to get the information about Metformin from but it was definitely with regard to breast cancer especially TNBC which is so resistant to chemotherapies.
Had a lovely day out in Cumbria and Westmoreland today. The weather was glorious if rather chilly in the wind. We had an outside lunch in a cafe courtyard which was a bit cool but just about OK. I broke my rule about not having red meat and had the best steak, onion and mushroom baguette I’ve ever eaten. (I’ve had every side effect under the sun except nausea which I suppose is a small win 😁)
Hi Lancashire Lass,
Metformin in conjunction with chemo is a very interesting topic to me.
(1) I am type 2 diabetic and on metformin for 20+ years. I am not sure whether metformin had help. I achieved NED for 2 and half years after 8 cycles of Taxol+Herceptin+Perjeta for my first line treeatment.
(2) Some members on this forum has mentioned about those off-label drugs metformin/statin/mebendazole/Doxycycline. You may get some information by searching for "COC protocol" to this forum.
(3) My understanding the usage of metformin for treating breast cancer is on trial and has not been approved for standard care cancer treatment.
Isn't it ridiculous that cheaper drugs aren't available. So frustrating and annoying.
How on earth are you keeping? Are you managing to sleep?
Hi and thanks for the information,
I’ll follow that up if this current chemo stops doing it’s stuff. It’s ridiculous that NICE can put barriers in the way and it’ll all be down to finances. I’ve read some academic papers that say using Metformin in conjunction with chemo helps it into the cancer cells but my oncologist says she can’t prescribe it because it’s not licensed for that purpose! Even though it’s as cheap as chips. Doesn’t make economic sense to me to use a very very expensive drug ie Abraxane which probably won’t work in TBNC and not add in something cheap to help it work.
Bureaucrats, I’ll never understand them.
❤️ Lancashire Lass
Hi Lancashire Lass,
Some more information about the drug.
Just read your good news. 😀
I seem to remember a member (Nick08) on this forum whose oncologist had directly called the manufacturer to access a new (hasn't been approved in UK at that time) drug ALPELISIB free for her on compassionate ground. Canada has a similar program. And the company name in Canada is as below. I hope your oncologist can do the same for you.
Gilead Sciences Canada, Inc.
6711 Mississauga Road, suite600
ps.is below the same company in UK ??
Ive been looking at various cancer websites and on an American site it mentions Trodelvy being approved by the FDA. One wonders why NICE is dragging its feet approving its use in this country.
Surely its more cost effective to use a drug that is targeted than generic chemo therapies that are hit and miss at the best of times. As secondary TBNC sufferers are we going to have to go through this every time a targeted drug is developed. How many deaths will occur while we wait for bureaucrats approval.
Hello Believe 369,
You are having a rough time, and I thought I had it bad. I was interested to hear what you describe as peripheral neuropathy from the waist down. Strictly speaking peripheral really means just hands and feet but I’m with you on it affecting other nerves. My left foot is numb and tingly to mid calf, right foot just the toes and sole but the area around my back passage is also numb and the muscles at the back of my thighs are really weak. My oncologist has no explanation other than to tell me what it isn’t. Reassuring to know I have no bone mets.
I am surprised your doctor has offered Trodelvy as it hasn’t been released yet unless it can be used privately. It sounds so promising too, hence the petition. I’ve just checked the petition out and it 403 signatures away from the required 200,000 to get a debate. So anybody reading this if you haven’t already signed please, please do. We TNBC girls have so few targeted options. You’ll find it on the home page.
Continue to Believe. All the very best x
PS I did cold cap 14 years ago and let’s just say I haven’t done it again, which speaks for itself.
.....I was going to do the cold cap thing, just couldn’t face it on the day. Extra stress! The nurse I had said that it wasn’t always effective and I have a good head of hair so I may keep a few strands....for the mo. So if you have a good mop of hair.......
That must be so worrying for you to be back on the road again.
Has anyone replied to you yet? I’ve heard about this drug but didn’t think it was available. Fingers crossed that it does the trick for you.
I am starting treatment for TNBC recurrence in a few weeks. Originally diagnosed in 2019 TNBC, Stage IIIb, with lymph node involvement; had mastectomy, chemo, radiation. After 9 months of treatment, told NED. I was "cancer free" for a very short time, it returned on the same side as mastectomy, now on chest wall, Surgery is not an option. My doctor started me on oral chemo, Xeloda, I tolerated that pretty well & didn't lose any hair -- but after 6 rounds of that, couldn't walk or put pressure on my feet so was taken off. Now recommending a new chemo for TNBC, Trodelvy...side effects are pretty intense. Has anyone been treated with Trodelvy? If so, what was your experience? Also, I'm going to also have cold cap therapy. Has anyone had experience with that?
This is devastating being on the road again in such a short time...I'm trying to keep my focus and make the right decision. Thank you all ---