I’m new here, my name is Naomi, I’m 32 and I was recently diagnosed with TNBC grade 3 which has also spread to the lymph nodes.
I have Pembro every 3 weeks for 8 cycles
&
I have Carbo and Pacli every week for 12 weeks (4 cycles)
then EC every 3 weeks for 12 weeks (4 cycles)
(Then surgery, radiotherapy and more immunotherapy following)
I started with the Pembro, carbo, paclitaxel and some zolodex (shot for ovary protection) on Friday 12th July and I have my next appointment on Friday 19th July.
I have been feeling realllllly rather rough since my first session, however I am due on my period within the next days and also found out my PICC line has a blood clot (which I hear is very common)
I have been very tired, not sleeping well at all (4 hours per night), mildly queasy and slightly headachey the last 2 days, my appetite and taste went almost immediately after the first session! my PICC line is sore…seems like a never ending list of problems
I’m slowly starting to recover and my next session is only 2 days away
Will it be like this every time? Does it get easier? Is it an up and down journey…so many questions.
I have the same diagnosis although no spread to lymph nodes, I am also on the same treatment plan , I am two treatments down so too early to tell you about side effects going forward but I was fine after my 1st treatment, but then caught covid so had to miss my 2nd planned for last wek I had my 2nd yesterday, all ok so far .
I am also cold capping, seems like a long journey ahead but hope it goes quickly .
I hope you feel better on your next treatment and try to stay positive it really helps, although hard I know.
Hi Naomi
I also have tnbc with lymph node involvement. It sounds like I am on the same treatment plan. I am sorry you are having to navigate this diagnosis and treatment, it is such a shock to take in.
I had my first carboplatin, paclitaxel and pembrolizumab yesterday. I am feeling okish a bit nauseous and tired. I am older at 57 so don’t have periods in the mix. My bcn just rang up to see how I was and said it was really important to drink lots of water especially as its warmer.
I am getting either a PICc or port soon as they struggled to get a cannula in so was interested to hear your experiences. I hope it settles down soon for you. I tried the cool cap too, I found it ok but feels quite heavy by the end of the session. I had a bit of a headache by then too. Next time I was thinking of taking a neck cushion in to see if it helped.
I am also struggling to sleep too, I have been trying
a meditation app to see if it helps but just hoping sleep will improve with time. If you find something that works I would be interested!
There is a chemo group for people starting in
July in the undergoing treatment that is really helpful for advice if you’ve not found it already.
I hope the next cycle is easier and they are able to tweak the sickness meds.
Thank you for your reply
I love your username (I am also a book lover )
I found that day 3 was my hardest day, the day after my treatment I went for an 8km walk and I think maybe that’s what pushed myself over the edge the following days (along with the blood clot)
Sleep wise it looks like it might be 3 days bad sleep following the treatment and then the next 3 almost back to normal, I think it’s the dexamethasone ant sickness that is interfering as they are steroids.
Honestly I am so glad I have the PICC installed, even with the slight discomfort at the beginning.
What with weekly treatments and weekly blood tests there’s only so many needles I can handle mine seems to have really settled down now (9 days after installation)
Next treatment is tomorrow and I’m feeling strong and positive today about it.
Good luck and since we have such similar plans please keep in touch!
Ohhh I do hope you’re ok! Take care of yourself.
I am glad you seem to be taking well to the treatment, hopefully my first week was a one off and I can get my mindset more mentally prepared for the next one!
Sending lots of love
Naomi x
Hi all, I am on the same treatment plan as you all. I have had 3 sessions of the chemo, with the 3rd today (Thursday). It’s 4am Friday and I still can’t sleep. This seems to be the pattern, I can’t sleep for 3 days, then it goes back to normal.
I’m not cold capping. I nominate myself as the control group. I found it too much and didn’t even try. I have long blonde (dyed) hair, I quite like the idea to start again. My poor hair has abused over the years. I am noticing it coming out in my hairbrush but nothing too much yet.
I had the port inserted on Tuesday, they used it for today’s infusion and it was so much better. I had full use of both hands, no pain finding the veins. It’s under the skin and once the bruising is down, it won’t look bad. Everyone I speak to who has one, says it’s the best thing they did. I am aware it’s not offered as standard to everyone. But you should be informed.
Yeah so the sleep seems to be quite the usual thing, the 3 days after I wake up between 3:45 to 4:45 after only near 4 hours of sleep.
But I guess this will be our new routine and we will adjust
The cold cap only started really bothering me for the last hour or so and today I will be having an hour less as no immunotherapy for todays session! That’s interesting that week 3 and you’re still not losing a lotttt yet, I feel like I’m losing a little bit more than usual in my brush but it’s my biggest paranoia so I’m probably overthinking it too much.
Anyway session 2 will be ticked off for me today and I’m weirdly excited about it.
Hello!
Im 28 and also diagnosed with TNBC. My treatment plan is a little different to yours. I had a round of EC every two weeks for 4 cycles to start off with and now onto Carboplatin and Paclitaxel weekly for 12 weeks. I also had 3 blood clots on my arm where my PICC line apart from that, absolutely no other issues with the line (apart from one blockage)
With Carboplatin and Paclitaxel the first week, i felt awful for most of the week (nausea, dizziness, tired). But after my second round, I felt way more human and was able to pretty much do everything and felt ‘normal’. My oncologist said that it is normal for people not to feel very well after the first treatment but improve after the second. So hopefully you will start to feel better soon! I much prefer being on this drug than EC, which i found really difficult. Im happy to answer any questions you have about EC
I also cold capped at the beginning for the first 3 rounds but my hair began to fall out in handfuls and it was really distressing for me as hair was just EVERYWHERE so i shaved it all off and stopped the cold cap. I only stopped because it hurt so much with a bald head.
@naomileigh I hope the second treatment goes well and so pleased to hear the PICC is ok now. I feel alot happier about getting a port line fitted now, there are so many blood tests as well as the chemo they can’t do it til the 16th August so I will try and be patient!
I have been for a short run (of sorts ) today which went ok but trying to balance the not over doing it with trying to keep on with the things that make me happy.
Its been interesting to hear about the sleep improving after stopping the steriods stop, for you @bex1 hoping this will be the case for
me too!!
With the books I am trying to read a book a cycle, have started with The Bee Sting but have a pile of books if I don’t get on with it.
Good luck with everythingx
@caz1970 I hope you are feeling better from the covid, there is a lot around atm.
How did your second treatment go? I have been trying to cold cap too. I didn’t find the cold too bad on my first cycle. I am not sure how it will work but thought I would try it. I have plan b of hairbands and hats.
@bex1 Thats really encouraging about the port (my hospital suggested a port as PICC lady is away on holiday so quicker to get a port). I wasn’t keen originally but it sounds like it can make life a lot easier. I hope your next treatment goes wellx
@glitteryrainbow Good luck with your next treatment. It is good to know the first treatment can be the worst and then your body settles a bit. I am moving onto the EC & premroizumab after 12 weeks of Paclitaxel so would be interested in your experiences. From what I have eead ir seems to gave more side effects for some people but longer to recover between treatments? x
It will be good to stay in touch with everyone xx you are all amazingxx
Hi
I was set to have the same treatment and cycle. I have 60mm x50x50 lump but clear lymph nodes. I had Pembrol but had a severe reaction to paclitaxol immediately. Ended up in Rhesus. It was a grade 3 reaction so I’m now going to nab paclitaxol but have to wait two more weeks.
Worried about the wait and now going to three weekly cycles.
Having huge waves of weekenss in my legs which I presume is the Pembrol.
So I may have spoken too soon re the hair, (i chose not to cold cap- I am the control group) I have completed 3 sessions of chemo and it’s starting to fall out ALOT today. I think I probably have one more week before I have to shave it off.
I won’t lie, I have had lots of tears today. I didn’t think it would have upset me so much. I’ve booked myself into feel good, feel better course. I have scarfs, turbans, wigs, caps and hats ready. This is my hat wig, for when I need to quickly pop to the shops or do school run x
So it seems my Carbo is only every 3 weeks also, so only Paclitaxel every week, which is great news for my side effects.
1st day after 2nd treatment and I felt totally normal
2nd day after 2nd treatment and I have a slightly uncomfortable tummy and my tongue is tingly (feels a bit like when you burn it on very hot food) and I do feel a little tired but nothing major.
BUT I got a whole 7 hours sleep last night (they didn’t give me any Dexamethsone to go home with so I guess that is why)
@loobyloo1 Oh no I’m so sorry about your reaction, I totally understand how the wait can unsettle you. My lump went from 40x25x30 to 80x30x40 in the space of three weeks (this is before I received any treatment) but since my first session I already feel like there has been a halt or dare I say even a decrease in size.
So try not to worry too much about the size or wait time at the moment, at least you have received some treatment, even though it didn’t go the way you planned, and reach out to your Drs for reassurance too, they should be able to put your mind at ease.
I haven’t had any leg weakness yet, however my period hasn’t come which I read online that it would take 2 weeks to stop and I had my Pembro 1 week ago so I should have gotten it.
Wishing you the best of luck with your new treatment plan x
Oh @bex1 it can be such an overwhelming thing, I think it’s because it is a more visible aspect of our “illness” that it tends to make us appear to be sick when we really don’t feel it, so while you may not actually be upset by the hair loss itself, you might be upset about the things that come with it.
I love the Hat-wig! I’m sure you’ll adjust very quickly to your new look
I’ve also booked into one of the courses, mine is August 6th, really looking forward to it, I also want to join some of the Maggie’s activities but I am a bit nervous about meeting new people and feeling like the “new kid in school”
Hey!
I found EC harder with more side effects. They lasted around a week for me, and then by the second week, I felt semi ‘normal’. The side effects included nausea, dizziness, tiredness, muscle aches, tingling lips and constipation . All the lovely stuff.
@loobyloo1 I think I replied on the July chemo thread too. I am sorry you had this happen I am having issues with wbc and worrying about that might change the plan, its good they have alternative pathways for us if we need them x hope your new plan goes well and your legs are feeling better
@bex1 I can relate to your feelings. I am cold capping but the nurses have said that it might not be effective. It is not surprising that it is uosetting . My teen daughter is worrying about seeing me with less hair. I am going to sign up for the course online & am getting hats and scarfs. I like the hat with hair. Do you mind me asking where you got it? Hope you are feeling ok xx
@naomileigh Thats good to hear about the side effects have been better this time & you can feel a difference in the lump size xx I am feeling a lot better, but everything tastes a bit weird atm and the injections for wbc are making me feel a bit achy but went out with hubby to watch athletics yesterday which was so nice to take my mind off things xx
@glitteryrainbow thanks for the EC info. I am trying to take things one step at a time but good to see whats ahead, too. Tge sude effecrs sound tough but uts good to have a bit of time to recover between. Good luck with your next cycle xx
So far I bought my wigs on SHEIN. Including the hat one.
But I have a more expensive one from simplywigs and I am being fitted for one at the Marsden on the 11th August.
I’m so pleased to read about your experience and that you felt an immediate change. I’m so looking forward to that. It will give me a sense of control back I guess. I’m the meantime I’m focusing on my diet. Best wishes to you x
Hi all, I was over covid for my 2nd cycle of Paclitaxol this week, had a reaction though which consisted of severe back pain they took me off for a bit and fed me meds to recover then back on to Pac, I was ok after that Have felt ok since, not sleeping as well as I am used too, I also go onto EC after 12 wks of Paclitaxol and reading between the lines does seem to be a bit tougher good luck with your next treatment everyone
Hi, I had same diagnosis in Nov 22 and exact same treatment, finishing January 2024. The first 6 months were the worst with the chemo and pembro. I had EC and pembro first and did find it much tougher than carbo etc and pembro. However, there is a longer period to recover with EC and pembro which helps.
The remaining Pembro after surgery and radiotherapy was very toletable i found compared to chemo and pembro.
Would strongly recommend getting a port inserted. All those infusions and blood tests add up.
I got dehydrated as hated taste of water. Dont be me! Made everything worse.
Also sleep was terrible so eventually got sleeping tablets which helped.
Good luck x
So, I had a consultation yesterday. I was meant to start my 2nd cycle of Carbo/paclitaxel tomorrow, BUT my ALT bloods/levels are high and so they have said to have a week off.
However, I saw the consultant, who I hadn’t seen since diagnosis and he did an examination and confirmed that the tumour has shrunk from 4.5cm to 3cm!! So this is great news.
I asked what will happen if my ALT is not lower next week, he said they may move straight to EC. As ultimately it is the surgery part that is important to remove the cancer.
I feel upset as would like to be able to follow the ‘best’ action plan, but trying to stay positive.
I don’t know what to do with myself with my now free day where I should be having chemo.
@philippaa thanks for posting your story . It’s nice to hear from someone who has gone through the same treatments. Thanks for the tips, I am trying to drink more water! Xx Have you finished all treatments now? Good luck!!
@bex1 thanks for the hat/hair info! Like the idea of grab and go. That’s such great news about the tumour shrinking by so much!! That’s brilliant news!! I am sorry the treatment got delayed but I hope you have a good day off and do something nicexx
I had my day 8 paclitaxol today which went well but trying to not do too much as had a couple of bad days on the Filgrastim injections. Made me realise I had been trying to pretend I wasn’t being effected by this (daft I know!). I am going to try and listen to my body
a bit more.
Good luck everyone with your tratments this week xx
, I am two treatments down so too early to tell you about side effects going forward but I was fine after my 1st treatment, but then caught covid so had to miss my 2nd planned for last wek 
I had my 2nd yesterday, all ok so far 
.
.
mine seems to have really settled down now (9 days after installation)
) today which went ok but trying to balance the not over doing it with trying to keep on with the things that make me happy.
if I don’t get on with it.
