Hi @naomileigh, my name is Emma I am 29 and got diagnosed with Stage 2 TNBC in April 2024.
I am on the same treatment plan as you, Pembro every 3 weeks, PC for 12 weeks (4 cycles) and then EC for 4 cycles every 3 weeks. I am also on zoladex (every 3 weeks) and did fertility treatment before I started chemo to freeze me eggs. After all this, then radiotherapy (TBC), surgery and more pembro for 6.5 months!
I am currently on week 9 of 12 of PC/Pembro and I am doing good. I am also cold capping and up to now it’s been working for me. Don’t get me wrong my hair across my body has fell out but I’ve managed to keep it on my head. I know EC is more intense so just waiting for that really to see if it has more of an effect. This was also one of my biggest worries and still is, and I over think too! But what will be will be, I’ve got a gorgeous Plan B wig. I am pleased to say as well my lump has got smaller, so I really hope for the best for you! I don’t have a PICC line so I can’t offer any advise on that - sorry!
I know I am further into my treatment but happy to chat to you more. I don’t sleep the best, similar to you 4/5 hours at first but I’ve made peace with it now as I was letting it get to me (even to the point where I bought a sleep tracking watch!) But this last few weeks I’ve felt more tired - and have been sleeping 6-7 hours per night. I do have up and down moments, but I am still going about my normal day to day life, try not to worry too much and stay strong you really do find strength inside you never knew you had
Best of luck for the rest of your treatment, you’ve got this!! Sending you lots of love.
@emma1 thanks for posting your story! We are on the same treatment but you are a little bit ahead of me. I have just finished by first cycle. I have had some tummy issues, but on the whole have been well. I am cold capping too & so far have only had a little bit of shedding but am wondering like you how EC will be! I have a number hats on standby
I am trying to keep active which helps with the stress. My youngest daughter & I are going to a concert in a few weeks and am trying to keep well so I can go. Husband is also hoping I can go as he really doesn’t want to go instead of me Sleep is still an issue, its good to hear that has improved for you.
Thank you so much for your thoughtful and thorough reply, although it’s never nice to see people going through this, it’s also nice to hear we’re not alone <3
I’m so glad you’re doing well! I completed my 4th session of chemo yesterday (I guess start of cycle 2? still getting to grips with the timings) but they didn’t administer my Zolodex for some reason, they said possibly next week, but reading your reply spurred me to give them a call just now and check on that.
Also they have had to take me off the Pembro for this cycle as I have inflammation of the liver, so unfortunately not the full works this cycle.
That being said, I am doing really well now, taking things as they come and trying to just go with the flow.
My head hair is going strong so far and that is amazing you’re still ok at week 9! In fact the only hair I have lost a lot of is ahem down below which is great.
Slept 3 hours last night but also as you said I’m just accepting it and adjusting my days a bit to cater for tiredness or napping now.
I don’t know if we are allowed to post our instagrams on here but it would be great to connect with everyone if you have it.
I haven’t posted anything about my diagnosis on there yet but have started follwoing some great accounts.
Mine is @naomileigh
Thanks for your message and always good to hear from others on same treatment plan
I will be on 5th session this week, have had two reactions to pac so may tweak my dosage! Have ono check appoint next week, other than that minimal side effects so feeling positive and managing to get out and about as per normal but like others have said I am concerned about EC but take each day as it comes!
Enjoy the rest of your weekend all, and all best wishes for the week ahead.
@booklover1 good morning! sorry to hear about your stomach, but glad you are doing well overall. always good to have a plan B re the hair loss but if cold capping works for a period of time, least we’ve kept it for them extra few months!
aw amazing - I hope you enjoy the concert. I went to the theatre the other week with my Mum and it was lovely, so I really hope you can enjoy it!
we are definitely not alone, although sometimes it feels like it when we’re so young going through such a journey.
Well done on completing your 4th session - you’ve got this! Don’t worry about the Zolodex, it lasts for 28 days (I think!) so try and chase it this week to make sure you dont miss a dose. Sorry to hear about your liver inflammation, I hope it goes down and you’ve not been too poorly.
I am so glad to hear you are doing so well, and long may it continue! So good to hear about your head hair too! I am the same, no longer having to shave my body hair is blessing in disguise - I’ve never felt so smooth!
I am the same, I just accept I can’t do as much anymore. Although the steroids do give me a boost of energy, I’ve not known anything like it and I can be so productive!
Thanks for sharing your profile, I will drop you a follow on Instagram now and feel free to message me on that as it’s probably a lot easier.
sorry to hear about your reaction, I hope your next few appointments run smoother! I do believe its a strong mindset that gets us through this and we’re strong to do so! life tests the strongest.
best of luck with the rest of your treatment and enjoy your weekend too!
Hi @caz1970
Did you have any rash issues with paclitaxel? I’ve asked in the July group too. Im worried they will change my treatment and it is really going well- my main tumour is noticeably smaller
Clare xx
I suffer with back pain but only during the treatment, apart from that it is going well so also do not want to change but the chemo nurse suggested the ono may suggest a reduction in my dosage! They gave me more steriod to help with the pain but didn’t seem to make a difference last week, but week before I was fine .
Great news your tumour is shrinking though so can understand you are worried about a change. Hopefully they can give you something to help with the rash!
Thanks @caz1970. I’ll post up if they change anything. I-m findin it difficult to know whats important…for instance i told them about neuropathy in my fingers and the nurse said to report back if I started dropping things. I had hoped a solution would be offered before then- exercises for instance? I did find some myself. Xx
Hi all
Well…I phoned and the hospital asked for photos. They have called back to say let us know if it spreads further or gets itchy or you start feeling unwell. That’s when it’s a problem.
I thought it would be more black and white- for instance, spreading up your back os an issue… All I was worried about was that i wouldn’t get my treatment so I’m ok to have the next round!!
Good luck with this week everyone. I hope we all sail through.
Clare xx
Rashes are quite a common immune system over reaction to Pembrolizumab. They grade them according to how much of your body is affected. Mine was treated with topical steroid (betamethasone), emollient and oral anti histamine.
Great to hear from you all. Its interesting to read as I am experiancing the same things. I have completed 4 sessions, so 1 cycle with the carbo and paclitaxal. I was meant to have the pembro but my liver won’t cope with it. I didn’t know, but with all the tests I have fatty liver disease, and so my ALTs were raised before I even started treatment. I am also having reduced paclitaxel doses. Which worries me a lot, as I want to fight the cancer with a full artilary. But as I have previously mentioned, they sent me early (you usually have it after the 2nd cycle is complete) for a ultrasound, and that showed the tumours in both the breast and my lymph nodes had reduced in size by half already. So it is working and this has restored my hope.
I wanted to let you know of a book that someone recommended to me and I just got from amazon and have read the first 3 chapters and it is really good so far, its not technical and feels like I can relate to all her ups and downs. A survivors guide to triple negative breast cancer by Michele Solak Edwards.
Lastly, today I am now officially wearing a head scarf. I will be shaving my head tonight. I have found the hair loss horrendous, I have cried so many times. I couldn’t cold cap, it was too painful. I have recently beaten myself up that I should have tried harder. I have so many wigs, I am going to the NHS fitting on Friday too. Its really hard.
Apart from that I sleep 3-5 hours a night, feel nauseaus and have a sore throat intermitentently, but I am still here and living my life. I just got back from a long weekend in centre parcs with family. I can swim because I have the port too.
@Coddfish thanks for your experiences about rashes. Mine is on my forearms. I had my cycle 4 today and the nuse has a look at the rash & advised to use moisturiser several times a day and take an antihistamine daily. If it gets more itchy and spreads they will prescribe topical steroid cream. They are not sure what the rash is a reaction too but possibly
the pembro.
I am looking forward to the port being fitted, it took 3 nurses an hour and a half to get the cannula in today
@bex1 I can understand wanting to have everything on offer. It does sound like you body is responding really well. The tumour shrinkage by half is really encouraging.
Thanks for the book recommendation, it sounds really good. I will definetely take a look. I can totally understand your feelings re gair loss. I hope the appt Friday will give you a boost xx
I’m glad you had a good break and got the swim!!
I just posted on the July chemo starters too, so sorry for the duplicate.
I had session 5 of carbo/pac yesterday and cc apart from a little nausea, tiredness- I feel ok.
My blood results this week should a significant reduction in my ALT result, which is amazing. I am feeling so much more hopeful. I now need some consistent low readings.
If you are cold capping - I urge you to continue. I didn’t and all hair has now been buzz cut, I was told it was a 50/50 chance of working. I have now read on google it’s more like 80%.
I’ve met quite a few ladies now who have kept their hair throughout. Others who had partial loss but still have enough.
It’s not just hair, but your identity. X
This is me at treatment yesterday! Smiling because of my bloods!
I have completed 8/12 weekly carbo/paclitxel and then will have the EC (aka Red Devil) 3 weekly - 4 times.
I haven’t had any Pembro because my ALT levels were too high. I’m not sure of the impact of that, but I just have to trust the doctors.
I will then have surgery… in my initial conversation they said it would likely be a lumpectomy and breast reduction on both. Which will be good, but then I worry about the reoccurrence, especially without the Pembro helping?
I havnt had Pembro my whole treatment and havnt been offered it. Try not to worry, every case is individual and ive just joined a group on FB which has LOADS of women who have had a range of treatments with 20+ years survival.
Im having a lumpectomy after ive finished treatment (two more to go!).
I am 29 and got diagnosed with Stage 2 TNBC in April 2024.
Sleep is still an issue, its good to hear that has improved for you.
.
