We told them i wasnt well and told them i’d need medicine for a number of months. We told them the illness was called cancer. They already know what cancer is and unfortunately know someone who died. They also do know survivors. I will say kids are resilient and that same evening we sat down for dinner together and chatted. We put on a brave face. So far my children are only aware of 6 months treatment. We will tackle the operation at a later time with the support of our family support nurse in the cancer centre. We have planted the seed recently that its going to be a tough ‘year’ ahead as they were talking about where we’d be going on our summer hols. Also i let the school know prior to telling them. They have been fab.
We told them on a Thursday and we gave them the choice to stay home Friday. One chose to go to school the other wanted to go shopping. They have both dealt differently. Feel free to message privately as i could go on and on!xx
My treatment plan is identical to this and i was told there is no break.
When do you start? How are you feeling? We had an a clinic appointment to go through all the possible side effects which i found incredibly scary, i then came home from my first chemo waiting for something to happen. It was an odd feeling. I was ok. My main side effects have been insomnia. Ive done week 1 of cycle 2 and the fatigue this week is another level!
I was told week 2 and 3 is far more tolerable so bear that in mind if you do feel rough off the first week it doesn’t mean it will be bad every week. That’s what im hoping anyway! Xx
Hello everyone, I’m in the February chemo starters group.
Found this thread & reading comments has helped. As you all have similar diagnosis and treatment plan to me.
I was diagnosed in January with TNBC left breast, 4 lymph nodes involved, one which it has spread to. I’m stage 3 grade 2
CT scan showed thankfully no evidence of further spread but still feel so anxious about it.
I Found a lump in December. Had the biopsies & markers put in but had to wait 3 weeks for full result’s because of Christmas.
That was worst time ever with the wait.
My treatment plan stated a few weeks ago. 12 week’s followed by 3 weekly ( 3 down 9 to go) then surgery probably September.
Still feeling overwhelmed with it all. Just trying to stay hopeful it’s now doing the job & shrinking it all
Xx
Big love to all you tnbc ladies here. Reading all of this has really helped me understand the realities of a tnbc diagnosis. I hope you are all doing as well as you can with your treatments at the moment.
I am still waiting for to finalise my chemo treatment plan but it is good to read here about what is likely. This waiting phase is so difficult. I feel like I have a few golden weeks though right now. Is there any advice or anything you wish you could have done before starting treatment with chemo? Trying to stay positive and distract myself a little before it all starts.
Sorry to hear you have joined us tnbc ladies @wren8 but glad that this chat has helped you understand hopefully what will happen going forward. Personally I just wanted the chemo to start asap, as I said in my original post it was the waiting for it to start that I found most stressful. Once I started it felt like I had some control.
The only things I stocked up on prior to treatment starting was anti bac hand sanitizer and masks. Like me your treatment will be in spring/summer time and I found it really relaxing sitting in the garden in the shade with a good book listening and watching the birds.
Dont be afraid to accept help if its offered.
Wishing you well on your treatment and remember it does eventually come to an end. Take care xxx
Thanks @diamonddapple. It sounds like you have had a long and tough time of it all. Sitting and watching the birds sounds quite nice right now. Best wishes to you.
Oops. Sorry meant to write a bit before posting!!..I’ve finished chemo early due to issues with pembrolizumab…I had itis…uveitis, colitis and then a skin rash. So i missed 4 weeks paclitaxel/carbo and 1 week EC. I had a mascetomy in January but then went back on steroids for my skin so I’m still healing and hoping my implant stays- it’s wonderful having a replacement breast.
Next is radiotherapy and more chemo because I didn’t get a complete response.
I’m coping though. I feel as the weather improves, so am I.
This cancer journey has been really tough. But I’m now in a place where I want to be positive and build on what I’ve learnt about myself and others. It feels like i have to option to be sad and angry or accepting and hopeful.
I hope everyone on this thread is managing ok. xx
If anyone has any questions about treatment plans etc please ask. I found it really helpful talking to other women, more so than asking the BCN. There’s also a facebook group for TNBC which covers everything but it can be a bit overwhelming. Xx
I needed to see your post last night. I went to a&e yesterday to raised temp. I am having antibiotics 3 times a day yesterday and today. Im at the end of a cold but otherwise feel ok. But my temp is up and down, mainly up! Im so worried. So far ive had 2 cycles of chemo x
It is worrying! But keep in touch with your team. I was admitted 3 x while i was on chemo and always well looked after. But I was scared each time…
I’m glad i helped! X
@diamonddapple thank you for checking on me. Sorry I haven’t messaged for a while. I had my lumpectomy and full lymph node clearance in September. Then had to have 2 more ops in October and November to remove more margins. I was just about to get going with 2 weeks of radio last week but the CT scan showed I had new TNBC growing in my breast again They are not sure if it’s in a lymph node (no lymph node cells in the biopsy). I’m having a PET CT scan tomorrow.
Diamond - how much radio did you have? Are you on chemo tablets now?
Hi to all the newbies I’ve got lots of catching up to do xx
So lovely to hear from you @lillytiger but so sorry to hear what you are going through.
I had 5 days of radio, I was told by the radiographer that up until not long ago it was 15 days but it was found that 5 days were just as effective.
I didn’t obtain pcr, there was still 5mm remaining. My Onc didnt want me to carry on with the stand alone Pembro due to thd pneumonitis in my lungs and the fact that Im asthmatic. I have been taking oral chemi, Capecitabine. I am on cycle 4 of 6. 6 tablets in the morning and 6 in the evening for 2 weeks then a week off. I have found the side effects minimal, lots of wind and very tired.
You will get through this hiccup Lillytiger, stay strong and remember its nothing the Oncologists havent seen before and they will have the abswers and treatment to deal with it.
Keep in touch my lovely, sending you a massive virtual hug xxx
Hi everyone!
I’m 35 and I was diagnosed with tripple-negative BC stage 2, grade 3 in January. They are still not sure if it spread to lymph nodes, waiting for a second biopsy results…Weeks of endless waiting and I was finally going to have my first chemo tomorrow but got a nasty cold 3 days ago, so they had to postpone it… Waiting again
I have no children so I was offered to freeze my eggs, which I did. I was surprised to read here that tnbc treatment can put you in a menopause or maybe I misunderstood it.
I will start with immunotherapy (pembro) + paclitaxel + carboplatin. Mostly scared of pembro, it seems many things can go wrong there.
I have 2 concerns and would be greatful to hear your thought about it:
I’m a bit concerned about my oncologist. I liked her as a person but first, she forgot to issue a sick leave for me (it’s done by the doctor here), luckily my psychiatrist did it. Then, yesterday I realized she didn’t send a prescription for the pre-chemo drugs. If I was to have my 1st session tomorrow, I wouldn’t have the drugs! This makes me very uncomfortable. Is it too early to consider changing the doctor?
Is it common to ask for a second breast biopsy? First they told me I have 2 lumps and both with cancer. Later the surgeon confirmed, but then I got a call that they actually didn’t find cancer cells in the second lump I’m about to start a very long and dangerous treatment and I don’t feel I’m 100% sure in the diagnosis. I just wonder if it’s dangerous to do a biopsy while going through chemo… Has anyone done it?
What an huge inspiration everyone is … I am in awe of every single one of you, you are all warriors, each and every one of you whether you have posted or not.
I’m newly diagnosed in January 25 - G3 S1 TNBC, aged 50.
3 weeks postop from a lumpectomy, lymph nodes not involved. Retesting Oes (2/8) & Prog (0) but these are unlikely to change and I’m now awaiting oncologist appointment.
I have been really struggling with everything. My diagnosis, the waiting, the lack of info, uncertainty and everything that might lay ahead.
I feel like I am permanently in shock, my brain has been in overdrive and is struggling to process what is happening. I don’t recognise me or my life anymore and am really struggling with every aspect of this and the worry.
You are all so brave and I wanted to thank all of you for sharing your individual journeys. For the first time in an age I don’t feel so completely alone.
Hi @chita
To try to put you at ease about your diagnosis. If they have offered you Pembrolizumab they have not only established that your tumour is triple negative, but also that the sample had at least 10% PD-L1 cells in it. PD-L1 binds with PD-1 to make your cancer invisible to your immune system, so your immune system leaves it alone. Pembrolizumab is a PD-1 inhibitor so it breaks that bind and allows your immune system to ‘see’ the cancer. The drug removes PD-1 everywhere, so there can be consequences if your immune system starts attacking other things.
It’s a risk/reward thing. When it works well, it works very well, but can cause other issues. I speak as someone with metastatic PD-L1 positive TNBC. Pembrolizumab has given me (so far) a lasting remission, but also damaged my kidneys, thyroid and lungs. I don’t think I would be here without having had the treatment.
@chita
I changed my oncologist part way through treatment. I phoned his secretary and just said I wanted someone else and fortunately another one had a slot for me. I trust her and feel comfortable in our appointments. If you cant trust the people treating you, it makes chemo difficult.
Following on from that, i did have issues in the chemo unit twice. Once a nurse gave me my pre- steroids too late or too early- i was cold capping so the timings were different from standard non-cold cap. Another time, a nurse handed me someone else’s drugs to take home. It made me feel uneasy.
I have had three reactions to pembrolizumab. I had three doses in the end and now im not allowed to have it anymore. I had uveitis and couldnt drive or see properly for 2 months, then colitis (steroids for months), then a skin rash all over my body (steroids again). However, it was worth putting up with all of that for the three doses. Three isn’t as good as 9 (i think it is suppose to be 9?), but it is better than none.
I dont know about a second biopsy but you need to know why they contradicted themselves- it goes back to the trust issue.
Keep posting and asking questions, someone will probably have a similar experience. Also the chemo monthly threads are useful scources of information and there is a triple negative facebook group.
Best of luck. Xx
Ah @kayb26 this is the worst time when you are waiting. Once you have a start date, cancer might feel more containable. You will find a way through that works eventually…it took me ages. I was diagnosed in May 24. Started chemo in July, then surgery and now I’m waiting for radiotherapy. Then more chemo.
I researched as much as I could.
I changed my diet and exercised to get me fit for chemo. I fasted as well- I’m not advocating diet or exercise in particular or researching but to somehow get an element of control or agency really helped me.
I bought short sleeved tops too and a wig which I never wore and loads of hats (which i also never wore!!). I just wear a beanie now.
You will look back in a year’s time and be amazed at how much your life has changed and how you have coped with it.
Xx
They are not sure if it’s in a lymph node (no lymph node cells in the biopsy). I’m having a PET CT scan tomorrow.
I’ve got lots of catching up to do xx
or maybe I misunderstood it.
I’m about to start a very long and dangerous treatment and I don’t feel I’m 100% sure in the diagnosis. I just wonder if it’s dangerous to do a biopsy while going through chemo… Has anyone done it?