Newly diagnosed TNBC

Hello there, firstly I’m sorry to hear about the passing of your dad, i understand how difficult a time this is for you all and now it seems another unimaginable journey ahead. 
I was diagnosed with TNBC on June 25 and started chemo two week ago. The waiting is absolutely the worse however it will settle down once treatment plan is organised and I actually felt relief once I had my first treatment. For me it was and still is, the keeping it together Infront of the kids that’s difficult but in a strange way it’s a blessing otherwise I would probably just sit and sit and cry. I hope you and your family are able to grieve and the time it takes to sort out ur treatment plan comes quickly xxx

Thank you so much for your response and positive words.  Going by the time span of your treatment plan, from diagnosis to 1st treatment. I know that all plans can differ, but that would suggest that my plan may start on 16th Aug 2021. This again would be brilliant  but we also have a 3 day break booked in York with a couple of visits pre-cooked also.  The teenagers would be disappointed, but pleased that I would be starting treatment.

May I ask, how did you feel during your first week of chemo? 

Do you think that I would it still be able to go on the break? 

Apologies if my questions seem silly.

Louise x

Good morning I am on the same journey a little further on. Are you having ec as your first chemo? I was able to work and ride and walk for miles on chemo. It is possible to go for breaks but be carful take extra presto prevent causes of infection eg take first aid kit, avoid injuries etc keep covid precautions in mind even though others aren’t wearing masks wear one a good quality one 

Hi,

I am due for my MRI & CT scans tomorrow as I have only been given grade 3, currently unstaged. Not due to see the specialist until 9th August, which seems ages away. Totally dreading this day and due to not eating as well due to increased stress levels, I am also losing weight.

Prior to diagnosis, I continue to wear covid masks andi am purchasing a thermometer too.  Extra precautions will be taken, but I haven't had a date to visit the cancer hospital each yet to discuss/start chemo.

What is the abbreviation EC mean? I feel totally in the dark with some of these x

It’s a type of chemo , there are so many , I had 6 of ec, then was meant to have 12 of paxitaxel but my tumour didn’t respond to chemo so had surgery and now on oral chemo. 

I have handwritten scribbled notes with 4 different chemo drugs on. Total of 19 weeks, first 9 weeks of paxitaxel  then carboplatin plus 2 others. I suppose it comes down to how the cancer reacts x

We had a holiday already booked which was actually the day after my first treatment. I’m so glad we went as although I was tired and nauseous I still coped and was great to spend time as a family. It was a beach holiday so didn’t involve too much so I think as long as you don’t overdo it hopefully you will be fine. Xx

Hi Mrs Spider

I'm sorry to hear of your diagnosis and that your dad passed away recently. I lost my dad on May 19th 2020 and I was diagnosed with TNBC in December 2020. 

Starting in January I had 3 cycles of EC chemo followed by 9 weekly Paclitaxel with added carboplatin on weeks 1, 4 & 7. 

My lump was 25mm and scans showed no spread. I finished chemo on 4th June and scans showed that the lump had gone completely. 

Yesterday I had a lumpectomy and one node removed. I feel really well and haven't needed painkillers (well not yet anyway). 

I also felt like it was happening to someone else, and sometimes I still do. I think because I mostly felt quite well going  through chemo and tried to carry on, as best as I could, as I would have done. It's a lot to take in and I think the waiting is the worst.

I have only recently joined this group but I wish I had joined much earlier as it really has helped me to read other people's experiences.

Hi Ponymad29

Thank you for story, it appears to mirror my life, with an additional year between when our father's passed away.  I am very worried but will try to post updates when received. My mum is coming with me tomorrow but waiting in the car.  A bit of moral support when required.

I was told that my cancer is aggressive and grade 3 - 3cm in diameter plus I require radiotherapy too which if correct, is when my body hair will disappear.  I have been wearing a headscarf all week to get my family and I used to how things will be (I like to be in control in what's happening, but my 'goblin' has taken are of that ..... not for long tiger, Mrs Spider and her family and friends will not give up! 

Obviously, I will be more informed late afternoon on 9th August 2021.

Hi Mrs Spider

If you have your treatment in the same order that I have had, which was EC chemo, paclitaxel with added carboplatin chemo, surgery then possibly radiotherapy (this hinges on results of yesterday's surgery) then my hair started coming out after my second round of EC chemo. So that was in February and it is growing back, it's around 5mm long now. My eyelashes and eyebrows are also growing back. I didn't try the cold cap so I have a wig for going out and hats and scarves for at home.

It's good that your mum will be there for you. My partner sat in the car for all of my appointments and he was allowed in with me for the appointments where I was given results.

Take care xx