Hi Diamond Good to hear you’re doing well 
My rash got worse after 4 days. It spread to my mouth and made my top lip swell like I’d had filler in my lips. Also was very itchy and red and covered most of my body. So I’ve had 4 days of intravenous steroids and no chemo. They think the Pembro caused the reaction.
So I’m now living in tracksuits and not going for walks as don’t want to irritate it. Seeing the Oncologist Thursday to see what we’re doing next about chemo/ immunotherapy 
Didn’t expect this so early on, but that’s the nature of this treatment I guess.
Hope yesterdays went well xx
Hi KM yes we totally understand what you’re going through 
The worst stage ever - the unknown. It’s such a shock getting the diagnosis and then going for the scans. Scared isn’t the word. You’ve just got to pass the time as best you can. Hopefully your scans will be clear and you’ll feel like celebrating - which is wierd when you’ve just had the diagnosis.
I had the genetics tests too. Mine came back clear. Have you had any close family history?
Do you have a date with your surgeon/ oncologist when you think you’ll get your results? Xxx thinking of you KM
Oh no lilly thats a bummer.
As we know it’s the unknown and everyone’s treatment journey is different with various side effects.
I’m sure your Oncologist will change a few things so you can continue with your treatment.
I get allergies so I have wondered if I will react a bit like you have.
So frustrating to get started and then have to stop for a bit but they need to ensure it doesn’t happen again.
Paclitaxel yesterday was ok and feel ok today so far.
Stay strong and positive in this shitty journey.
Let me know how you get on with the Oncologist. Sending you a virtual hug xxx
1 Like
I too found out my breast cancer is TNBC today. And like everybody, I feel like things are moving slow and not sure what to think. Have always been afraid of going to the doctor and distrust the medical industry. I feel like once you go, you open a Pandora’s box of more bad news each time. First told it’s breast cancer then TNBC which I didn’t quite know what it was when my doc was being encouraging. Then I get back and look it up and devastated. Trying to get in with oncologist to order scans. Oncology surgeon is who first saw me and did ultrasound and biopsy. I guess she couldn’t do the rest. Trying to process. Sending you my warm thoughts especially as someone in similar situation.
Hi Lola
Try and not google too much and if you do go on the reputable sites like Macmillan and this one who will have the up to date information.
I also follow a lady on instagram called Dr Liz O’Riordan. She is or was a Breast Cancer Surgeon who is now battling breast cancer. She says it how it is.
Sorry you have joined this shitty club Lola but take it one day at a time, speak to your BCN about any fears or questions you have.
It is the fear of the unknown but it us definitely doable. They say the worst part is after diagnosis and waiting to start treatment which is so true. Once you start treatment you feel more in control and ready to fight the bastard cancer.
Sending you a virtual hug
2 Likes
Thanks I’m just fed up with the waiting it’s been 2 months since I found lump just want treatment to start
1 Like
Hi no family history of breast cancer but alot of other cancers. Glad your genetics came back clear. I’ve had both my ct scan and bone scan done now so hopefully will get the answers soon
Sorry to hear your diagnosis hope you get scans soon my journey has been a long 2 months finally hopefully had last scan today and waiting for them to discuss me at mdt on Friday and then hopefully get my treatment finally started
2 Likes
Wow. How grueling. I hope that they can finally get you to the treatment phase. The waiting is so difficult.
1 Like
Hi Gerry
How are you doing on the EC chemo? Hopefully ok.
You must only have 2 left which must be brilliant xx
Yes let’s hope so it’s been a long wait since diagnosis
Hi Diamond - Update from today - no more immunotherapy/ Pembro for me cos of my ‘severe’ reaction as they call it. They say they are finding ‘younger’ (I wasn’t sure i was in that bracket 
) people are having more severe reactions. I’m having Paclitaxel on Friday now. Are our treatments online now? What day are you having on Friday? day 15? Hope you’re still feeling ok? Xx
Nearly there KM with those scans. When you know the outcome and your treatment plan, I hope that helps you feel more in control of what’s happening. I felt on edge during the scan phase. So much to process. Exhausting xx
Cheers what your treatment plan been like since
Hello Lola - thanks for messaging. It is a terrible few days when you get the TNBC diagnosis. You can’t help but Google and try and process what might happen. In shock and scared. We understand. It took a few days before I started receiving appointments, letters, phone calls. They are working hard behind the scenes I assure you. When you start going to scans, you’ll realised how much they will look after you and do a thorough job to work out what next. It’s sad you distrust the medical industry. I can’t fault my team. There’s a high amount of coordination needed to get you started with the right treatment. When they do they will be checking you every step of the way xxx take care Lola and keep letting us know how you’re getting on xx
1 Like
Oh no lilly sorry to hear this.
Yes our treatments are now on the same day, next Paclitaxel Friday, day 15.
So far I have felt ok apart from a gripey tummy and wind 
. And the minor migraines which I havent had this week. I keep waiting for some side effect to hit me.
I had my PICC line put in this morning which was fine.
Has your rash gone down now lily xx
2 Likes
KM-
I started the same as Diamond ie Pembro (immunotherapy)/ Paclitaxel/ Carboplatin every 3 weeks for 4 cycles - with Paclitaxel weekly for week 2 and 3 of the cycle. Then due EC every 3 weeks for 4 cycles after. Then surgery, then radiotherapy then more Pembro. But cos of my bad reaction to Pembro I’m not continuing. Not everyone meets the criteria for Pembro.
So far having the chemo has been a lot less stressful that the scan/ results stage.
Keep in touch KM with your plan I hope you hear soon xx
1 Like
Still got a rash Diamond. It’s fading every day. It’s not itchy now though and I don’t look like I’ve got measles any more.
Sounds like you’re doing super well 
so you’ve only just had your PICC put in. Hope it’s feeling ok xx.
Ok sounds very full on for you sorry that you didn’t get on with Pembro. I just want to get started now do you know what surgery your having yet x what are side effects like
@diamonddapple Thanks for thinking of me! You are right I have only 2 more EC treatments left, had my second last Thursday. With both I have had ‘down days’ days 4-8 in each cycle. All tolerable but feeling weak and sometimes a bit dizzy and unsteady. My oncologist thinks this is tied in with finishing the steroids on day 3. Interesting that this didn’t happen during my first 12 week cycle with the same steroid dosage 
. On a very good note I was delighted last cycle when day 9 came and I felt really good, for the rest of that first cycle I felt the closest thing to ‘normal’ that I have since before starting treatment on the 14th of November! I am hoping that the same happens on this and the last 2 cycles 
. As you know the weekly treatments are very limiting on life outside the treatment schedule. Now that it’s 3 weekly I am off to Ireland on Monday (I’m Irish) for a weeks holiday. I am also delighted to say that the horrible metal taste in my mouth (Carboplatin?) has gone and the neuropathy in my fingers, toes and face is also fading. All in all I am finding ‘our’ treatment plan to be long but tolerable with light at the end of the tunnel, even if that light is that of an operating theatre! So many wonderful women on this forum, I salut us all!! xx
2 Likes