Soon starting treatment

Sounds like you have a lot to take in and cope with.

injecting yourself sounds awful, but I had a hip replacement a couple of years ago, and had to inject myself daily for a month afterwards with an anti-clotting medicine. It really wasn’t as bad as it sounded, and I got used to doing it quite quickly. The hospital watched me do it once before I went home, which helped reassure me I was doing it right. 

I like having everything in writing, and put it all on the calendar so that I know where I am (I use one on the phone that also reminds me of what I’ve got coming up) 

if you have questions that you didn’t think to ask on the day have you tried ringing your breast care nurse? I found mine very helpful with the things that occurred me to after I’d walked out of the clinic! 

good luck with it all. 

Hi Kookie_b, sorry to hear of your diagnosis. Whilst I can’t comment of the Paclitaxel and carboplatin, I did have EC. I had 4 cycles. Each cycle the pattern was the same with the side effects. I would suggest keeping a diary and noting down how you feel each day. I was able to work on both my chemo treatments (EC and Docetaxel) I had a reduced work time to help. It’s best to see how you cope and whether or not you feel up to working. It also depends on your job too and whether it may be physical or just sitting at a desk. We all handle the side effects differently. 
When I was on EC I had to inject myself once a cycle with pegfiligrastim. (This maybe different for you as there is another one called filgrastim which is done over maybe 5 or 7 days each oncologist is different in what they prescribe) It was a pre-filled syringe and I did mine in my tummy myself. It’s very quick and easy to do and doesn’t hurt. The nurse will show you . As I understand from other friends I have made who have been In Paclitaxel they have not had to inject themselves so you may be lucky and not have to too. 

Picc lines or ports are great. I have an arm port. It’s makes the access for bloods and chemo drugs so easy and no worries with nurses trying to find veins.  I understand your worry about clots, this was my worry too as my mum used to suffer from blood clots. I had a blood test done before mine was inserted to make sure my blood was fine. I don’t know what they look for but I guess there is something they check out. 
I don’t know about immunotherapy but I’m sure there will be others that can offer their experiences about this. 
It is hard to take everything in but to help just take one stage at a time. First 4 cycles of this chemo and then the next 4 cycles of that chemo etc it makes it so much easier to handle. 
Perhaps with your dogs you could prepare yourself and check list to help. This way you would have it written down and can check their meds or feeds off as you do them. That way it’s one less thing to have to worry about as it’s all written down. 
Maybe you could get some support from friends or family. Perhaps they could help by taking over a specific task for you. I know if you are independent that can be hard to do but it’s the one time that a helping hand is great to have. 
When you get your letter or before if you think of any questions do write them down so you can have them to hand and ask your oncologist or breast care nurse. Maybe take someone with you to your next appointment to help make notes.

You can click on my name to see my journey so far. Not everyone puts their biography up but it’s helpful as you can see who has a similar diagnosis to you which can be helpful.

Wishing you all the best with your journey.

Hugs from cuffcake x x x x x

The injecting yourself isn't so bad - I too have had the prefilled syringes.  And I too have been able to work from home just reduced hours.  You will fight this and we are all here for you. Put a notepad on the couch with a pen so when the thoughts come tumbling out you can write questions down.

Hi Kookie_b,  You certainly have a lot going on and I only can imagine how difficult it is to make the decisions.  I am not an expert in the different types of breast cancer but I do know that triple negative is aggressive but with new advances in treatments outcomes have really improved.  I have a link for you that may help you to decide on the penzolizumab.  We call it Keytruda here in the US and it is used for many types of cancers.  Here is the link https://www.nejm.org/doi/full/10.1056/NEJMoa1910549

I am sending you all my best wishes and some prayers too.  I think self injections probably sound worse than they are and you will become better at it with time.  
Hope your doggies feel better soon too.  They are so intuitive so will know that something is going on with you.  Love pooches!!

Take it easy and glad you are getting speedy treatment. 
Barbara

Hi there,

I am also triple negative and yes, it is a bit of scary one, but the treatment options are so good now compared to what they used to be. I was advised not to google as it would overwhelm me and I would end up reading outdated information. I googled and thats exactly what happened! Best overall i think - especially in these early stages whilst your anxiety is so high to leave the discussions and advice to those in your team.

I have had three rounds of EC, and although a bit tired and spaced out at times, no other tangible side effects. I cold capped and have retained my hair. My recent MRI showed a good response in terms of shrinkage to the tumour. Everyone is different in how they respond. On Tuesday I start 9 weeks of Paclitaxel/Carboplatin. I have had genetic testing too - awaiting the results. It takers ages! Seems like we are on a similar journey.

I see you have had some great advice from people here already so I wont repeat what they have already said. What I would say however is try not to dwell/overthink - it will just take you down rabbit holes! Try and get out in the fresh air somewhere green every day - I walk my doing every day in the woods and it’s a game changer if my mood is dipping. Lean on us here who are a little bit further down the line. As a fellow triple negative person, happy to offer any support in relation to anything around that if its helpful for you.

Jan x

If you have been offered Pembrolizumab, your cancer has a protein (PD-1) that enables it to ‘hide’ from the immune system. Pembrolizumab is a checkpoint inhibitor that helps address that. Unfortunately it also removes the same protein from your endocrine system, hence the set of potential complications you have been given. Clinical trials showed Pembrolizumab plus chemo to be more effective than chemo alone. TNBC can be awfully aggressive - I have stage 4 TNBC. I wish I had been able to have Pembrolizumab at an earlier stage (it hadn’t been authorised for early stage TNBC when I was first diagnosed last year). I am expecting to go on it shortly to try to hold back the mets in my liver.

Chemo is doable, I recommend keeping a diary so you know what to expect as you run through each cycle. I hope you are able to manage your dogs. 

You have really explained it well and I remember when Penbrolizumab was only offered to late stage TNBC.  I hope you do well on the drug and it is truly an amazing drug and a game changer. 
Barbara

I am considered early stage TNBC but still not offered immunotherapy as  tumour less than 2cm and no lymph node evidence. I queried it with my consultant as it feels like a bit of a gemstone given its protective factors that is out of my reach. Is it wrong to want that game changer??

Hello JPH,  I did some research and have sent you the link so you will understand why not being offered immunotherapy.  I certainly understand why you are questioning why not me for this treatment but this article is excellent.  Take care and hope all goes well.  Here is the link https://www.breastcancer.org/research-news/fda-approves-keytruda-for-early-stage-triple-negative-breast-cancer

Barbara

Wow - thank you so much for looking for that. It really is a very good article and now I understand. The oncologist did say they had to balance my clinical presentation against the potential side effects, but I was cynically thinking it was more about cost. I kept reading that it had been approved for early stage TNBC and thought well that’s me, so why not me then?

Honestly thank you so much. A little bit of understanding goes a long long way!

Start my 9 weeks of Paclitaxel/carboplatin on Tuesday after finishing with EC so fingers crossed. Hope you are ok. Jan x