Pembrolizumab (Keytruda)

From what I’ve heard thought I would go for the one in your chest I think it’s called picc 

Hi TNBCG 

I finished my neoadjuvant chemo (EC) & immuno (Pembrolizumab) treatment on 25^th July 2023.  And had my single mastectomy and immediate reconstruction on 31^st August.  I’m doing well thanks- it’s about 3.5 weeks since surgery and I have more energy and I’m getting used to the implant- still some pain and ‘odd’ sensations but painkillers manage that.

I do have some VERY good news to share, my pathology report came back after surgery and I’ve had pCR (pathological complete response), there was no evidence of cancer in my breast tissue or the 6 lymph nodes they’d removed.  And no cancer cells in the lymph vessels or blood vessels (no lymphovascular invasion).

This was completely unexpected, the final MRI before surgery showed an 8mm tumour, so I’d prepared myself for radiotherapy and possible oral chemotherapy (capecitabine).  Basically, I was prepared for everything but good news!

Next step for me is adjuvant Pembrolizumab, the plan is for me to have 8 treatments every 3 weeks, so if that goes to plan will take 6 months.  Probably starting in 2-3 weeks.

I have a meeting next week with an Oncologist to chat about immunotherapy and TNBC.  I’ve mentioned before I have a PALB2 gene alteration, this increases my risk of the breast cancer returning, so the plan is to have the second mastectomy and implant after the immunotherapy is completed and when I’m feeling up to it.  I do have some concerns about long terms effects of immunotherapy but in my last appointment I was reassured about close monitoring and that at any time I can stop treatment.

I am amazed and happy to have pCR- I know this is not a guarantee it’ll never return but is very positive news, and for anyone on here who doesn’t get pCR this does not mean you still won’t have a good outcome from your treatment- I certainly expected to be in this category and still felt hopeful.

Sending love to you all xxx

Hi TNBCG  & Tennis  this page on the Breast Cancer Now website gives more info on options PICC and Port  (and Hickman Line)  the PICC is the one through the arm, the Port through the chest.  Others in the community have personal insights on this.  I had most of my treatment through a cannula in my hands, which was fine to begin with but became more difficult as treatment went on. 

If you’re going to have Epirubicin as part of your treatment I would definitely say have this via a PICC or Port as it really damaged the veins in my arms as I had it via a cannula.  I had a PICC inserted for my last EC treatment (as I had developed painful phlebitis in both arms- thanks to Epirubicin).  The insertion of the PICC was absolutely fine- I did get it out the same day- which is unusual, but the removal was painless and very quick.  Others can tell you more about living with a PICC.

I think I'm going to have a Port for my 6 months of immunotherapy- it won’t need weekly flushing like the PICC and will be more discreet as it’s implanted under the skin; if anyone has any insights on the Port please I’d be really interested to hear. 

I know it’s more of a procedure to insert the Port but I’m thinking the benefits are greater for the Port with my 3 weekly Pembro treatment over 6 months.

Hope this helps x

Thanks Blue Triangle. I will take a look at this link. 
I am feeling overwhelmed before starting and was thinking how to avoid so many procedures before starting. But if port makes sense, then maybe better to just do it. 

thanjs again 

Hi Tennis 

I think we can all identify with your feeling of fear and nervousness after being diagnosed with TNBC, lots of scary stuff comes up it you google TNBC- so don’t!  It’s mostly out of date information anyway.

In terms of side effects it really does vary from person to person.  With weekly Paclitaxel and 3 weekly Carboplatin and Pembro I did really well.  I didn’t have nausea, I had mild fatigue and kept nearly all of my hair- with cold capping (though eyebrows and eyelashes went).

I was extremely thirsty- a dry mouth can be side effect of Pembro, so I’ve been drinking lots of water- which is a really good idea anyway.  A big water bottle for treatment days is a must I found.  Also, I have to carry water with me whenever I go out.

The steroids they give with my treatment made me extremely hungry (I didn’t expect this), and I’ve put on at least half a stone since starting treatment- I’ve always been slim (size 8-10) so that has been a bit strange for me.  Healthy eating is of course a really good idea, and I have lovely friends who used to make food drops on chemo days.  I’m a vegetarian, so enjoyed vegetable pasta bakes, curries, veggie cottage pies and the like- food that filled me up.  I tried to eat healthily, but also had treats now and then- dark chocolate is a favourite.

Of course some people have sickness so have to eat little and often- we’re all different.

I didn’t have any issues sleeping, at Leeds we’re advised to have our last steroid tablet early in the day so it doesn’t keep us up in the night.  I found I was really buzzy the day after and got lots of work done- ha ha!

Completely agree with TNBCG that getting out for a walk is a great idea- when you have the energy- I have a dog so tried to do a daily dog walk (or two) to get fresh air and to keep moving.

I did cold capping- I found it absolutely fine (I know others find it too uncomfortable).  My tips for this, two paracetamol half an hour before cold capping starts, I took my own cotton stretch hairband to wear under the cold cap.  I wore thick socks and I also wore a nice wide scarf and a warm top- zip up fleece or jumper (both with loose sleeves) to keep toasty warm.

I also had a wig fitted very early on- I wanted this sorted before any hair had started coming out, but didn’t wear it until the second half of my treatment regime.  I got a lovely, free wig- I’m based in Leeds.

Although my outward side effects were minimal on Pac/ Carbo/ Pembro, it did have other side effects- notably high liver enzyme readings and low neutrophils.  And this did pause my treatment for 3 weeks- don’t worry if this happens, I just saw it as a needed break for levels to improve. And I got welcome time away from my weekly visit to the day ward.

I carried on working from home throughout my treatment, I have a very flexible manager/ employer so they were understanding when I had fatigue and couldn’t do much.  I know not everyone has these options.

Other tips:

Get to know your Breast Care Nurse and don’t be afraid to get in touch- I can ask her any questions and she is able to take any questions she can’t answer to the relevant professionals- such as Oncologists.

And don’t be afraid to report side effects, as they’ll often have suggestions on what to do to help. 

I did have a tougher time on the second part of my regime EC & Pembro, I won’t go into that now- I’ve written about it previously.

I’m now two months on from chemo and Pembro and it’s 3.5 weeks after surgery, I’m feeling and looking more like myself. 

One day at a time, and sometimes one hour at a time is the best approach, if you think about everything that is to come it will be overwhelming.  Once you get started you just get on with it.  There’ll be bumps in the road but you’ll get over those.  And of course this community is always super helpful.

Sending lots of love & strength xxx

A PICC might be fine for you.  Have a chat with your Breast Care Nurse and there'll be insights on this forum that will help you make up your mind.  Also, on the day ward you may be able to speak to patients who have a PICC or Port.

Hey Tennis - I got a port before my chemo started and so glad I did. Made life so much easier when getting infusions.  I wasn't given any choice - at the hospital where I am being treated, if you get AC (which is similar to EC in UK) you have to have a port, as they want to minimize vein damage. Once I had it placed, it hurt for a couple of days but then mostly wouldn't even know it was there.  I sometimes caught it on clothes etc - it is under the skin but it sits up a little higher than the rest of your chest - but otherwise, no issues. I had it taken out during surgery as I knew I could get the Pembro via regular IV and if I needed additional chemo, it would be pill form.   Definitely glad I did it.

That's amazing news!  Congrats!  I am the opposite.  My pre-surgery MRI showed a small area which my oncologist said was highly likely to be scar tissue / inflammation.  It was actually 4mm of residual disease.  So I start the chemo pills 2 weeks today.

Thank you

did you get a port as well? 

m thanks for all the advice. I noted down everything 

Thank you Cleavers !  And sorry to hear you have some residual, hopefully the chemo pills will mop it up