@kartoffel and anyone else with a port. Please can you let me know about insertion? I’d really like to be asleep throughout as I find these sort of things really painful but my oncologist said they only do general anaesthetic for children. How much does the sedation help?
Hi @isthisreal
Really sorry you have had a tough time. I was planning to post something tomorrow when I saw your message in
My emails. I reached home about an hour ago and I am drained.
I have had a terrible day too, starting with my train being cancelled and therefore no time to get lunch before my session. When I arrived at my chemo unit, the nurse who was assigned to me had never dealt with kadcyla and was not experienced. Her attempt to cannulate failed and she hurt me, I was in tears and asked to get someone else. A nurse I have entire trust in came and managed to get in, although she used an awkward place on my hand which meant I had to stay still for the whole infusion. My blood pressure dropped and I had to drink a lot and wait for my BP to be high enough. Quite similar to your day unfortunately so I know how you feel. Otherwise the infusion went ok once I managed to start. The nurse wanted to release me after 15 min which I queried as NHS and other guidelines mention 90 min observation, she then let me stay longer and checked my BP before I left. I was feeling quite nauseous when I left but the nurse did not advise anything… by that time it was already 6pm. And guess what, all trains home were cancelled from central London so I had to go home by bus!
Glad I am home now, very tired and a bit dizzy. Still a bit traumatised. I will ask for someone else straight away next time if she is around!
I hope you can manage to relax, and enjoy the weekend. Touch wood our next round will be smoother.
Big hugs
Marion xx
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@marionse25 god that sounds awful 
what a horrible day , you must be exhausted … is this a fairly new drug ? Sounds like bp issues are the norm with it so maybe they should be putting fluids up at the same time or before the infusion ? Also I’m unimpressed they didn’t stick to guidelines in wait time after infusion
I gave a really low bp so gave to be careful as lots of drugs cause if to crash , my bp was only 80/40 after my op !
I was told I will be on Kadcyla if I don’t get a complete response after the op. I am on Phesgo and Paclitaxel now. Pac is weekly but the norm is docetaxol I’m told (i had docetaxol in 2018 when I had FEC-T). IT was hormone receptive then but had a FISH and a similar test after op then. I’ve read stuff about if you have a FISH test maybe you should have HER2 treatment. Also some people get Kadcyla offered to them regardless of if they get a 100% response on NHS although it’s 5% more effective but costly.i will be asking this question as 5% is alot 2nd time round. I’m private.
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Hi @arty1
Kadcyla was trialed more than 10 years ago (the Kathrin study) but I think it’s only been approved in the UK for a few years, at least for primaries. It is herceptin with chemo vs herceptin with perjeta (phesgo). Either way not great for my heart condition.
I am on the FB kadcyla group and a lot of patients get longer infusions and fluids. I may need that.
Not nauseous anymore which is good but I suspect I won’t sleep much! Insomnia is one of the SE and my sleep is already so poor. Dear what we have to do!
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@marionse25 it sounds like you need fluids and a longer infusion rate for sure .
The heart issue thing , a friend of mine who had her2 two years ago … no heart issues but was prescribed ACE inhibitors as part of her regime , she had no issues with phesgo and no change in heart function … she’s under an Oxford Hospital , it must be a postcode thing 
.
Looking into it though it only works if prescribed while having chemo and herceptin together . It doesn’t work if you are in herceptin therapy alone …… I find all these studies fascinating and as @naughty_boob you said you wanted to be informed, I feel the same way … it’s just making sure it’s from reputable sources - we do need to be our own advocates in this and forewarned is forearmed
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@Linda_Corinne - how are you doing on a weekly regime ? That sounds hard .
I’ll be interested in what they offer me ,I was enthusiastically told that they are still considering it early cancer despite being everywhere in my boob…
Not bad now. I had a painful bottom until i changed to different anti sickness meds I think. Last time I had the same issues but have IBS now. I have mouth issues again too but am using mouthwash and salt water in warm water and Bonjela which is doing the trick. Am working full time from home and not had a day off yet although I did last time in an office but had time off. 5 down 7 to go. Had 4 docetaxol last time but was 85 to 90% effective so going for 100 this time. It’s hormone receptive too so Letrozole failed me which is worrying going forwards. Another question for my onc. I saw another onc re Kadcyla recommendation but I did mention it here too as have seen consultant in Bristol and referred to an onc so can have it locally as Bristol is 1.5 hours plus for me depending on traffic which can be stop start on the motorway. Fortunately my Aunt lives 2 miles from the hospital in Bristol and I did a video call with the onc there who’s very experienced and nice but strangely also didn’t mention Kadcyla in his letter but did mention carboplatin. I have 2 lung nodules but they should go with chemo I am told as wondered if that was why it was mentioned. Onc didn’t know here either as it’s usued if triple negative normally he said.
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How long did they run your infusion for? Mine was over an hour and a half and I had fluids. Maybe that helped? Had a teeny bit of nausea yesterday morning, so I just self medicated with some of the ondansetron that I had left over from the last chemo and that seemed to help. I’m sorry that the cannulation didn’t go smoothly for you either… 
I don’t have any good tips for that, never had one go smoothly for me. My veins on my left (useable arm) arm are super narrow. The doctor was going to see if he could put a port in my arm instead, but took one look at the veins and was like… nah, not gonna happen… 
I think I probably would have been in the same boat as you and @isthisreal if I had to be cannulated for the infusion.
@isthisreal not gonna lie, the port insertion wasn’t super fun - it was more uncomfortable than anything else because they were working right next to my face and I had to stay still with the drape basically covering my face. I started shaking by the end because I hadn’t had any food and was also stressed by holding in one position. It pinched a bit in the neck and there was a bit of pressure both on the neck and chest but I wouldn’t say there was any pain. Maybe they would do some sort of twilight sedation for you? I’ve heard that’s better from friends who have had it but I’m not sure if they offer it at your hospital. It’s weird because I would say it was an easier insertion than the picc line but more uncomfortable because it was closer to my face… if that makes any sense or helps at all. If you get claustrophobic at all, maybe they would be more likely to give you something to calm you down before doing the procedure because it did get claustrophobic.
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@Linda_Corinne Im impressed you’ve managed to carry on working - sore bum sounds awful tbh … I have terrible internal piles and suffer from severe bleeding so I’m not looking forward to those being aggravated !
1.5 trip to Bristol sounds like too much of a slog , I hope you can get it locally
I’m going to try with a cannula initially for my chemo , both my mum and I have SVT and picc lines increase the risk of arrhythmia, she managed with a cannula for her chemo . I Also take anti coagulation meds so may not be suitable for it anyway
Hi @isthisreal i had a port inserted prior to chemo, seems a long time ago now. I just had local anaesthetic no sedation as i dont like it. It was uncomfortable and felt very strange as tube went in vein with some discomfort in my chest and up into neck. It only lasted momentarily. The procedure doesn’t take long. However the port was a godsend and no trouble at all, so glad i had it, even though i dont jave too much trouble with my veins. It was taken out when i had surgery after chemo. I have a neat scar on my chest for which i’m using silicone tape .
Well done to Kadcyla people snd sorry all did not go smoothly. @marionse25 what a nightmare with the transport, you just can’t rely on the trains these days.
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I had 12 weekly Paclitaxel and some people say it is easier than 3 weekly Docetaxel (both taxane chemo drugs). It wasn’t that easy for me. I had 3 different anti sickness drugs and at one point had to take 2 different ones each day. I had a reduced dose and had an allergic reaction on my 3rd week, had UTI, another reduction in dose then another unidentified infection that gave me a temperature (likely UTI but dip was negative and labs showed slight positive but was 5 days after it started). I was hospitalised for 6 days, then my liver bloods went through the roof after 4 different antibiotics ( 1 oral 3 infusions). The chemo was cumulative so over the weeks I became more fatigued and ‘lost’ more days in the week.
The first few weeks I had 3 bad days, then 4/5. One of my good days was travelling an hour or more away to sit in a chair for 5/6 hours (cold capped). So some weeks I had 1 day I could do something. 12 weekly infusions is also more time consuming than 6 x 3 weekly infusions.
I had upset tummy (loperamide was my friend), fatigue, aches and pains, brain fog/chemo brain, sensitive scalp, sore on fingers and toes, nerve issues in hands and feet. I’ve probably missed some side effects. No paracetamol was allowed except while in hospital so as not to hide a temperature.
I know this sounds bad but I was signed off work ( I worked in a school so could teach). I applaud those who can work. Like normal life we all react differently to pain or illness and have underlying health issues that can impact us.
This was my experience, reading others on Docetaxel and other 3 weekly regimes, they generally had 7/10 days feeling bad and at least a week when they were able to things.
Chemo is not nice to anyone but it changes our outcome and chances of recurrence but it’s not infallible. It destroys the cancer and other cells so it’s no wonder we feel rough.
I hope this helps people understand a bit more about what it’s like. To be informed. 
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Good morning Everyone,
Sorry for not posting yesterday, Kadcyla literally floored me down with nasty SE and I spent most of the day in bed and in pain.
That first infusion has been worse than EC-T for me, my first night was awful with shooting pain, body aches, headache, insomnia, flu symptoms and sore throat. I had nausea all day and self medicated. I have just called my hospital hotline and they advised to continue ondonsentron until someone calls me.
Never been so shattered in my life. I had no nausea on EC or taxol so I am really worried.
I can’t see myself so poorly for 10 months. My next round is on 25 October, so lets see how my bloods are then. I will try again but all these SE plus cannula nightmares are not what I need.
@isthisreal and @kartoffel I hope you are not experiencing anything like that.
I am back to work tomorrow. I worked throughout ECT but I am worried bow. I have exhausted the little company sick pay I had which is adding to my anxiety.
Hope you all have a smooth Sunday.
Love,
Marion xx
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@marionse25 I’m sorry to hear of your side effects, if you still feel rubbish tomorrow, I’m sure work will understand. You may have to adjust your work schedule to accommodate your treatment.
As far as today goes. Be kind to yourself, watch some rubbish tv, have a bath, just relax with a book. Eat cake, remember no calories for us!
Thinking of you
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@marionse25 Oh you poor thing, that sounds awful! I hope they’ll be able to give you something to help you feel better soon.
Can’t really complain at the moment. I’m feeling a bit tired and I don’t have much of an appetite (think that’s mostly down to food not tasting super flavourful). Not sure how much of the tiredness is Kadcyla and how much is other reasons (activity levels, radiotherapy, tamoxifen, new puppy).
Hopefully @isthisreal is doing ok as well?
Thank you! I have just had a 2 hour nap I hope I will still be able to have some sleep tonight I went to buy eggs just before I went to bed, thinking I am going to bake! I have no appetite but maybe something home made will feel comfortable.
Waiting for OH to come back from work, he will be happy with a cale he is such a sweet tooth!
Have a lovely Sunday evening.
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Hi @kartoffel
I am relieved to hear you are doing OK.
I have taken some clarytin and hopefully it will help with pain. I read on the kadcyla FB group that it has worked for a lot of ladies.
I am so upset to be so exhausted. I did ok with ECT and was hoping I would have minimal SE. I have to wait until my BCN or someone else calls now. I think I may ask for kadcyla on a different day. Friday is no good as the call center is never really helpful at the weekend, and my nearest A&E busy and scary. There must be a reason why the hospital is nicknamed ‘May Die’ . It also spoils my weekend. I had chemo on Mondays and it was working better. My onco is only onsite on Friday so I changed days only for that reason.
At least I haven’t started my AI yet, although I am now worried my hormones could be naughty and the cancer growing baxk.
I hope your tiredness improves quickly. Hopefully we will hear from @isthisreal soon. I am such a ‘worrier’!
Take care
@marionse25 That sounds really rotten 
I would let work know and see if you can delay returning or is working from home a possibility?
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Hi @arty1
I have been working from home fully since I started the first chemo. I may need to travel again soon but I am HR so hopefully can get some sympathy from my team! My manager is off tomorrow and I am probably going to spend the day going theough emails and catch-up with my colleagues.
I work for a private equity owned US company, so not the best environment for someone with BC. They already don’t get why we have ‘so many’ holidays…hence the limited company sick pay we get. Anyway I can’t look for another job now and I need my job.
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