Pembrolizumab (Keytruda)

Hi Mumblesgilead

lovely to virtually meet you too.  I am finding the ‘community’ here very comforting.  I too feel very lucky and thankful re the immunotherapy.   Pkease thank your neighbours!!! How is eveyone feeling?  I had my first CT scan yesterday results Monday.  Is anyone working at the moment?  I dont know what to do as I do feel okay but nervous about my appearance and maybe catching something?

xxxx

I am a nurse and ward manager so they have said I can't work as the infection risk is too high. I feel quite well though so I feel guilty for being away from my team. I have had so many appointments recently though that I would have struggled to work full time. I think it depends on what your role is and what the risk is like. And how you feel and what you can manage. Xx 

Its a hard call isnt it.  The office has about 12 people and I meet ‘general public’ aswell.  Understandable in your job as a nurse, must be strange now on the other side of the table?  I am also on zero hours contract so the financial impact is hard too if I dont work. Still helping children (one just at uni) and other lives with friends.  What day is your next chemo? What drugs are you taking? Xx

Have you taken any financial advice from macmillan? I have had some from a charity called Maggies which was really helpful but my sick pay though the NHS is very generous. I am on full pay for 6 months and half pay for 6 months. 

You can also claim PIP and benefits if you aren't working and earning. 

I would discuss your risk and financial concerns with your consultant and they may be able to give you more advice. 

It's hard to know how our treatment will effect us too and what we will be able to realistically manage.

I am on 12 weeks of weekly paclitaxel with three weekly carboplatin, pembrolizumab and goselerin to suppress my ovaries. I will then go onto EC which I believe is much stronger. 

Then surgery, more immunotherapy and maybe radiotherapy depending on what surgery I end up having. I am leaning towards a double mastectomy and reconstruction more because of my age and liklihood of reoccurrence. 

It does feel strange being a patient now but I just keep telling all of the people caring for me to just treat me like anyone else because I don't know anything about oncology. So this is all new to me and I don't want them to assume I know stuff and not explain it in as much depth if that makes sense. 

What's your regime? 

Jem

Morning Jem

sounds like I am on same drugs as you apart for the drug for the ovaries.  Although they havent told me how long this particular regime is and what is after this chemo wise.  I am veering towards not going into work I think.  I have appointment before(macmillan financial) 3rd week of chemo this Friday so I will quiz her then.  I had Hodgkins Lymphoma as a teenager and so ovaries dont work as had premature menopause at 18 maybe that is why I’m not on the ovaries suppressant.  I am 53 now and had my babies (20 and 23) through donor eggs I feel so lucky.  
have you been graded and staged? My lump in right breast is very large so another reason to have chemo first before surgery.  They are going to see if I have BRAC gene as have family history of different types of cancers not just breast.  
have you a family link? Do you have children? Have you a good support system round you?

Yes I think that would be why. I opted for ovarian suppression as I am only 32. And my fertility was my biggest concern. I don't have any children myself but I have two step kids who are 8 and 9 and wonderful. We have had a round of IVF and frozen 6 embryos as a back up and they have said that 70% of women can still have a baby naturally after ovarian suppression so I am keeping my fingers crossed that we can have babies one day - the figures are very reassuring. 

And like you have so wonderfully written their are other options if we can't <3

I have two great grandfather's who died fom prostate cancer but no other family history. I am having genetic testing due to triple negative and my age so they have told me it will be about 8 weeks before I get those results. 

I have stage 1 grade 3 triple negative cancer in my left breast about 3cm and quite deep. And possibly another small tumor next to it or attached they can't tell and haven't tested it as they have said my regime nd treatment won't change either way. I also have a cyst embedded which was the lump I could actually feel so I am feeling very lucky/grateful for that as I may not have felt my actual tumour without it. They do not think any of my lymph nodes are effected but plan to take them for testing when they operate anyway. Xx  

Oh and yes I have the best support system around me. I live close to my parents which is very handy and I have a wonderful partner and friendship/work group so I am very lucky. I have also found the charity Maggies extremely helpful for hair care and skin care courses and to meet other people in similar situations. I am hoping to join the art classes that they run and maybe do a few online courses with them. 

I hope you also have a good support network? xx 

Hi everyone 

i recently spoke to my nurse about this drug at Mount Vernon hospital and she said it doesn’t include TNBC.  But like you I had read that early TNBC it was being used.   I have grade 3 TNBC, no Bracca gene which hadn’t travelled to lymph.  My treatment so far has been, lumpectomy in December, followed by 3x EC and I’m about to start 3 x Docetaxal.   Have I missed read information or is it something that is offered if other Chemotherapy hasn’t made a difference.  Anyone know?  Thankyou everyone  hope you are all soldering on.

lots of love and strength 5 Chihuahuas

I think Pembrolizumab is available under the following conditions

More than 10% of the cells sampled (tumour and immune cells) have the PD-1 protein (this is often described as a combined positive score, or CPS, of > 10.

and either it’s an early stage TNBC cancer, greater than 2 cms or with lymph node involvement. 

or it’s metastatic TNBC where at least 2 lines of chemo have already been used (eg EC plus Paclitaxel). 

Thanks for the info codfish!  I still havent been staged as they went straight to chemo and immunotherapy before other scans (will know on monday) i am grade 3 lump is 4cm but feels so much bigger.  Does anyone know when you can physically feel the lump getting smaller?

love and strength to all