About to start Trodelvy, any information please

[LucyLump]

Hi Flic, 

I have been on Trodelvy since March and at my last scan it was doing a great job sorting out my lung mets (they had disappeared). Sadly I think nearly everyone looses their hair. The first couple of rounds were a bit hard but once my body got used to it it was fine. I do get tired and have to have a sleep sometimes, particularly after the week 2 infusion but most of the time it is ok. There is a very active support group on FB if you use it - 'Stage 4 Triple Negative Breast Cancer (UK and Ireland only)'. There are a lot of ladies on there on Trodelvy. Really hope it works well for you. 

Xx

[flic]

hello

I am.aboit to start trovdvy  on Friday, 

any advise.. please

anyone suffering hair loss?

considering micro blading...  so I don't feel so awfull..

I have tnbc in my liver, lungs, and now spleen... I've just had head radiotherapy. so my start date git delayed on this drug..

but finally glad to be starting but o have this awfulk dry cough, as well.

I heard that dark nail polish was a thing to wear  to stop loss of fingers nails. ?

is there a another support group that's more active then this one... 

hope everyone is doing okay..

love  to all

[Lancashire Lass]

A definite downturn once the steroids were done. Went out for lunch at a canal side pub and then had an ophthalmic migraine, no headache but I felt very weird and couldn’t see properly. I spent the afternoon dozing. Same the next day, spent all day in bed feeling weird and very wobbly. I did wonder if I’d make the second half of the cycle but although I don’t feel brilliant I am going this afternoon. If I can make it to the unit that is! I wonder if it’s the chemo or just me. I’ve never asked just how extensive the mets are in my lungs. I wonder if it makes a difference to each individuals response to each chemo. Let’s hope the three days of steroids will give me a boost for the week end.

LL x

[LucyLump]

Hi LL. 

Hope you are doing ok today. I had a couple of wobbly days after coming off the steroids but feeling brighter this morning so hopefully things are moving in the right direction. My tummy is an odd shape but so much more comfortable so all is good. Definitely tell your team about the Ondansetron. There are plenty of alternatives they can use instead. Hope you have another sunny day. Xx

[Lancashire Lass]

Oh Sweetheart, nearly 6 litres of fluid! You must have been so uncomfortable, that must be a huge relief. Does your poor tummy look like a deflated balloon? Second cycle so far so good but I’m still on steroids so we’ll see over the next day or two before I have dose 2! I have discovered something rather concerning however. Ondansetron is not good for patients with cardiac arrhythmias and I have AF! I don’t normally read leaflets but assume the doctors have got it right. However this chemo does not give me nausea (few do!) so I read the leaflet to see if that was all it was given for. The result is I’m not taking Ondansetron and with no ill effects but I must tell my oncologist as I think it’s rather important. I do wonder if it was that that caused the fainting fits last time around, I can only wait and see. So for me no diarrhoea and vomiting, the side effect that appears top of the list and seems to be treated with the most importance. I wonder why I’ve escaped it?

Another lovely day here too. I managed a short breathless walk yesterday perhaps we can get out again later. My husband is pressure washing our courtyard flags which are currently a lovely shade of green!

LL xx

[LucyLump]

Hi Lancashire Lass, 

Hope you are managing ok after your IV on Thursday. I had my second part of cycle one on Thursday. Bit wobbly today. Was in hospital all day yesterday waiting for them to drain my ascites. Oh my word it was so worth it. I had been so uncomfortable for weeks. Process was ok. Not too painful. They drained off 5.75 litres  of fluid so I went home tons lighter - other people would pay for that! Going for drives for picnics sounds lovely but I know what you mean by the price of fuel just now. It is a lovely day here in Scotland. Will try to sit in the garden later. Let us know how you get on with this second cycle. Really hope it is better for you. Xx

[Lancashire Lass]

Last month certainly was a bit grim to say the least but I am feeling somewhat better although still breathless and weary. The oncologist couldn’t see any reason not to proceed with the reduced dose so here I am, once again attached to an IV pump. I have to admit to being nervous about it all.

Have you ever had the ascites drained? I can’t imagine how uncomfortable that must be.

The isolation really gets me down and our escape was to go for a drive in the car taking a flask with us. In the summer we’d have a picnic somewhere lovely. But damn Putin and his expansionist ideas causing fuel prices to go through the roof, we’ve had to draw in our horns a bit. That sounds awful, considering what the Ukrainians are going through but you know what I mean. Oh the joy of going to the theatre or cinema, or any event really. I miss going to my WI group too.

Fingers crossed that this reduced dose will be kinder to me 🤞🏻
Lancashire Lass

[LucyLump]

Oh my goodness Lancashire Lass, I am so sorry you are having such a bad time. It sounds absolutely horrendous for you. Many ladies on other sites seem to be coping reasonably well. It sounds like you are having the side effects for everyone. What a nightmare. I really hope you can continue on a reduced dose and that it helps. Will be thinking of you. Luckily yesterday and today (so far - it's only 8am) I have felt slightly better. Quite anxious though about second dose tomorrow. I also have ascites which is really uncomfortable so hoping they can do something to help that too in my week off. Totally with you on the not wanting to sit about in hospital bit. I too have been isolating since March 2020. Last night I dreamt I had been to the theatre. It was so lovely. Such a shame we can't order our dreams. I would like to go again! Sending hugs. Xx

[Lancashire Lass]

Hi Lucy,

Good luck, I hope you fare better than I did. This is by far the worse chemo they’ve tried me on. I also developed chronic constipation rather than D&V that was predicted. I can only advise you take Movicol daily, maybe even twice daily. I was worried it might provoke diarrhoea but in fact it didn’t and I had to resort to a suppository in the end (sorry that wasn’t meant to be a pun 🤪😁) The dry mouth became a very dry throat , mouth and nose. I developed a huge ulcer inside my right cheek which made eating and drinking really difficult. The district nurse advised Anbesol, which is a local anaesthetic gel (grown ups Bonjela) hurt like hell putting it on but it worked long enough for me to be able to eat. Then somebody on here advised Diflamm spray, which is an anti inflammatory. I also used Corsodyl, alcohol free mouthwash four times a day and Nystatin drops even though I wasn’t convinced it was Candida. All of these helped. After the next, reduced, dose I shall start mouth washes immediately. On day 11 I started having dizzy spells and on Day 12 I couldn’t stand without fainting. I was bed bound for the next five days, unable to get to the loo without help and even then I fainted a couple of times. The next bloods showed my neutrophils were in my boots and my Hb had dropped so they delayed the next cycle for a week. I had blood taken this morning so we will see if the next cycle, reduced by 20% as a result of the side effects, will go ahead. I really want to give this chemo a good go as it’s supposed to give good results but at full dose it really is harsh and I for one couldn’t do it month after month.

Of course we’re all different and will respond differently but I wish I’d been forewarned just how severe the side effects could be and advised what to do about it. The helpline at my hospital is pretty useless, tending to want you to go to the medical assessment unit for any problems. Well I’m sorry I haven’t  spend two years in isolation to sit in an MAU surrounded by people with goodness knows what to be treated by a junior doctor who knows nothing about oncology who will follow a protocol of IV fluids and antibiotics, whether you need them or not, before sending you home. Crazy system.

I hope I haven’t scared anybody, not my intention, but at least knowing what you might expect can be helpful and allowed you to be prepared. Trodelvy is so new to this country the oncologists really ought to be monitoring patients who are on it more closely. Or maybe it’s just my hospital that can’t be bothered. Really good luck to everybody trying it. We can only keep our fingers crossed it will live up to its reputation 🤞🏻😀

[LucyLump]

Hi Ladies, 

I am on day 5 of my first infusion of Trodelvy. I have no D or V. Lots of burping and inability to poo along with dry mouth. Main problem though is feeling lightheaded. How long does this last? I am really hoping it will get better before I have to venture out on Wednesday for my blood test. Any advice gratefully received. On positive note I think my cough is a bit better. Xx

[Lancashire Lass]

Hi,

It must be great to have a supportive team around you. I said I’d keep this thread updated but of course it’s only my experience and we’ll all be different. As it’s a new drug to Britain I think it’s worthwhile for we participants to pass on info to one another and help if we can.

So I’ve had both parts of Cycle 1 accompanied by a premed of steroids, antihistamine, paracetamol, Ondansetron and Nitazidine. The first weeks infusion took three hours but the second week it could be given over 1-2 hours which is just as well as it took two hours of its shelf life to get it from pharmacy. We only had time to get it in before it expired at 3.30pm. Poor communication and delivery system.

I had a lot of meds for home, steroids, anti sickness and anti diarrhoea and filgastrim injections. The first four days weren’t too bad. I had a very dry throat, felt only mildly sick, queasy really and felt really hungry. Only trouble was after eating I nearly passed out and had to lie down. Day 5 was a bit grim from that point of view. Periodically I felt either too hot or shivery but my temperature was normal for me. I also had a couple of facial hot flushes, weird. As for diarrhoea, forget that I have the exact opposite and it’s driving me mad. Just how much Movicol can one take in a day!🤔🤗. On part 2 I was more or less ready to go again. Apart from the worrying delay it went OK. The steroids make me hungry as a hunter though. Day 2 we ventured into the big wide world for a drive and a bit of a walk. I think I overdid it a bit as I was shattered by the time I got back to the car. My breathing is not good and I stroll along being overtaken by snails 🐌 The throat once again is dry and I have a very sore red area inside my cheek which makes eating and drinking anything hot rather painful. I’ve had some tummy discomfort and really bad wind. I never used to be able to burp now I could create a symphony! Anybody any suggestions as to how to deal with this. Energy levels are down again and I get light headed on standing which is a bit alarming. I am glad there are new things coming along that may help us I just wish they weren’t quite so harsh.

All the Best. X

[SusanPigott]

I'm afraid I cannot help with experience but I am in a similar situation and actually started 9n Trodelvy this Tuesday. Whilst I understand all your worries (although I have had a wonderful team around me) i realise this is a bit like a zip wire when you step into the unknown. But think of all the advantages we have now compared to just a few years ago. Chin up, think positive and be thankful you have been chosen. 

[Lancashire Lass]

Thank you ladies for your reassuring replies. My concerns were unfounded I’m really happy to say. I had to get to the hospital really early as they thought I was a completely new patient to them. (Hospital notes are all computerised and they are difficult to use and see things at a glance, so sort of acceptable.) Anyway there’s obviously been a shake up on the unit. More staff to start with who were more willing to explain and inform and even chat a little. It was a long day though, 6 hours in all as there are three IV premeds and two oral before they can give the Trodelvy which has to be made last minute as it has a very short shelf life. (Hence my move from the smaller unit back to the main centre, they couldn’t risk transporting it in case of hold ups) The first infusion was 3 hours but occurred without any problems, much to my relief no allergic reaction, in particular. Though a patient nearby did react to their medication and the staff were extremely efficient in their response, which was very reassuring. Just the little things that can boost confidence. The patient was alright by the way. So far any side effects are minor, a very dry throat, a lot of wind, a slight headache which moves about which is odd but no nausea, vomiting or diarrhoea, but it’s early days and the increasing number of doses may bring that on. Fingers crossed it doesn’t!

I’ll keep this thread updated and hope other Trodelvy patients join in with their experiences. It’s a shame more of the FB group don’t join in here as it feels safer. I don’t do Facebook.

Thanks again ladies for your support it means a lot.

Helen x

[LucyLump]

Hi Lancashire Lass,

Firstly just wanted to wish you all the best for tomorrow. I am hoping to start in two weeks time so will be really interested to hear how you get on. I think from what I have read in the other forums that most people seem to be tolerating it ok. Although the first cycle is particularly tough for some it looks like it often settles down after that. I think the initial infusion takes 3 hours but it can be reduced to 2 hours after this first one and maybe reduced further to one hour later. Good Luck. I really hope it helps. 

Xx

[Jaybro]

Hi LL

I feel really quite excited for you and a little envious. I belong to three Stage 4 Facebook groups and most people seem to be finding Trodelvy a relatively easy ride, though there have been one or two whose experience has been a bit like EC treatments. It might be worth going in and looking at threads on Trodelvy. The most relevant will be in Stage 4 Triple Negative Breast Cancer (UK and Ireland only), but there are also people in Stage Four Deserves More and in 2nds Together . They are friendly and supportive groups and you’d get an instant and honest response.

The problem is, they are obliged to inform us of the main side effects (I’ve always had different ones) and that is always alarming (I’m already thinking ahead - vomiting???) but they are controlled, as you say, with other medications. After taking 18 cape tablet a day, I can’t imagine there would be too much medication!

Could you get your care transferred to another hospital if they are such a lousy bunch? You do have that right. Again, who’s is what I’m learning from the FB groups. Am I right that you live in an isolated spot? Surely in that case you could look in different directions? I don’t know how that would affect the Trodelvy (whether it’s negotiated on an individual patient basis or whether it’s negotiated with the hospital). It must feel pretty scary, not having confidence in your team. I’m treated at a Regional Centre of Excellence but there is no special provision for bc nurses specialising in secondary care either. I think it’s a huge oversight. I use the basic breast care team and they are very supportive but a bit ignorant about how Stage 4 is different, which is what we need, especially emotionally. I do still use the oncology rehabilitation physio service and we have a Maggie’s Centre (where in fact the Secondary Support group run by Breast Cancer Now is held). My oncologist, who treated me occasionally during primary treatment, has never seen my kind of metastases and my kind of tumour. I guess I could have shopped around for a different oncologist who has but I know this one will do his very best for me and I know he consults a much wider MDT. It must be hard not feeling they care or show an interest in you and your concerns.

Good luck with the Trodelvy. I do hope it lives up to its reputation and it halts this vile disease. I’ll be following your experience as closely as I can as I have a vested interest. Fingers crossed it’s not as bad as you’re anticipating.

Jan xx

[Lancashire Lass]

Hi Everyone,

I’m about to start Trodelvy next Thursday. Talk about a double edged sword. It’s great that it is triple negative specific and is supposed to be 2x more effective than other chemos for this but it means two weeks IV treatment one week off. So tethered to the hospital indefinitely. The side effects sound horrendous and to counteract them there are shed loads of meds to take. In addition I am the first patient to have it at my hospital and I am not at all confident they have know how to deal with any problems. They haven’t filled me with any confidence since I started this back last May. They are an uncaring, casual bunch, often offhand or downright rude. Apparently as a secondary breast cancer patient I don’t get a breast care nurse, there is no nutritionist, no on oncological physiotherapist, no psychological help, in fact nothing in the way of support at all.

So if anybody has already had experience of Trodelvy I’d love any info you have. Has anyone had an allergic reaction? How long does each session take? How bad are the side effects? That kind of thing. I’d be so grateful I feel I’m really in the dark here.

LL x