Hi lovely ladies. I was diagnosed with triple negative breast cancer last month. I have a 20mm tumour and 2 lymph nodes are affected.
They have found a mass behind the tumour, and I’m having another biopsy this week to check it out.
My treatment plan will consist of 12 weeks of immunotherapy, and chemo, carboplatin and paclitaxel. The paclitaxel will be weekly, and I have 3 gscf injections per week.
I will then have a further 12 weeks of 3 weekly doses of immunotherapy, and different chemo cyclophosphamide and epirubicin, again with gcsf injections.
I’m quite worried that the weekly cycles won’t give me any recovery time between doses and how this will affect me seeing my grandchildren. I know the priority it getting better, but I wondered if anyone else has had a similar treatment plan, and how they coped.
I’m also interested in what everyone took to the chemo sessions with them
Also has anyone has tried hand and foot cold therapy and did it help with neuropathy?
My nurse has already recommended using a cold cap which I’ll try. I’m not worried about losing my hair, if it happens it happens, but I am worried about long-term effects on the body.
Hello @mouse701 …. I was diagnosed TN in January and started treatment on the 9th March … exactly the same plan as yourself except that mine is 16-weeks, then 16-weeks … I think that every trust is different, so don’t think anything of you being 12-weeks and me being 16! I have the Filgrastim for three days after treatment,and these are what stimulates your bone marrow so that you can keep going on the weekly treatment … I’m counting myself very lucky at the moment as I’m entering Week-7 and have had treatment every week, no issues … my liver is under stress, but that’s a no-brainer because it’s working so hard … I drink about 4L of water a day to flush out all toxins, eat 2000+ calories / high protein of about 120g a day …. taking each day as it comes …. my hair started shedding probably after Week-3 and whilst I have still got hair … it is sooo thin, so I started wearing turbans this weekend … I’ve suffered with my skin, 2-weeks after immunotherapy pretty bad and then it clears to start 2-weeks after the next immunotherapy … a pattern there! Everyone reacts differently, but hopefully you’ll have similar reactions to me, a fellow TN, and be ok week on week …. I’m not that chatty on here though I do read and ‘heart’ a lot of posts … happy for you to contact me because there are not many of us TN and it’s reassuring when you hear of someone on the same treatment plan
P.S. I’m 51, still working (WFH and go into the office one day a week because I want to), I still go to the gym twice a week … I am more weary, but I just listen to my body and rest xx
Hi @big Thank you so much for replying and for sharing your experience so far. Wow, that’s really great to hear, I’m glad it’s going so well for you and hope the skin stuff eases off . It’s a godsend to know we’re not alone going through this, and can talk to others having a similar experience.
24 weeks seems like a mountain to climb at the moment, then there’ll be the op and potentially radiotherapy. I can’t wait to get the chemo done.
I started having pain in my breast last night, the first time this has happened. Did you experience this? I’ll call the nurse tomorrow to keep them updated.
I’m having a biopsy on the mass behind the tumour this week, plus they’re inserting the tags, then a kidney test for the immunotherapy, then a picc line put in. I’ll also be having the injections to stimulate bone marrow.
@mouse701 - Yes, I experienced pain in my breast where the lump was … it felt as if the lump was growing and pressing against the skin, sometimes shooting pains and sometimes a dull ache and prior to treatment starting … it felt as if the pain was there all the time! What I will say, is that the pain pretty-much stopped after a few days of treatment starting and now I have no pain whatsoever … genuinely …
Also, from finding the lump in December last year, being diagnosed and going through all the tests and waiting for results … my stress level was the highest ever, my body hurt everywhere … my hip, my back, headaches …. I had convinced myself that being TN, it had spread all over my body!!! That wasn’t the case, it was purely my body reacting to the stress!
I know what you mean about this being a mountain because I’m the same as you in that I’ve got chemotherapy, then surgery, then radiotherapy, then more immunotherapy … I’m looking at it as my army working bloody hard to get rid of this cancer, so if I can help the army do its job in any way I can … I’m on it …. definitely taking each day as it comes helps, I feel … tick the days off as you go @mouse701
Genuinely contact me anytime, any questions just ask …. there are a handful of other TN ladies on here who have been wonderful in their advice to me … I’m sure that they’ll reach out @mouse701 and you could post in the Triple Negative area of the forum too …. xx
Hi. I’m 37. Exactly the same treatment plan as you. Can only speak to the P&C and immunotherapy at the moment, as I’m only 4 weeks in, but I have had some bowel issues which are being sorted by meds and have had a bit of a rash from the immunotherapy on week 2. I find that days 3-4 are my ‘peak’ in terms do tiredness and side effects. My treatments are on a Monday and by the weekend I feel almost normal so far. Long may it continue sending love and hugs on this journey xx
I was diagnosed with TNBC in December and started chemo on 30 Dec. I’ve completed the 12 weeks of Paclitaxol and carboplatin and have now had two ECs. I found the first twelve weeks to be a breeze relatively (I’m hating EC!!). Carboplatin made me feel really nauseous on day four but actually I found if I pre-empted it with the antisickness tablets, it wasn’t even that bad. It’s nothing compared to EC. Although that being said, tomorrow will be one week from my last EC cycle and I’m doing much better, so perhaps the first week of EC is awful but the second week isn’t so bad. I found the paclitaxol only weeks easy so I hope those weeks you’re on good form to see your grandchildren. My chemo unit gave me compression gloves to wear during Paclitaxol to prevent neuropathy and I think it worked well. I’d recommend buying some (I think you can buy some for arthritis). I didn’t stick with immunotherapy because I have Crohn’s disease and the abdominal pain was horrendous so I can’t speak to that, but I found the first 12-weeks much better than expected. I hope that helps. And I’m 45 as a reference!
That’s exactly the same as me. I think my imagination is taking over with different aches and pains at the moment so that’s been really helpful to share, thank you.
What a great way to look at it, an army fixing our bodies. I’m going to use that one .
Thank you for the offer to get in touch, I may weel do that. This forum is full of lovely, kind and strong women.
Thanks you for sharing your experience @treacle treacle. It’s good to get to know how the cycle can work. I wish you all the best for the rest of your treatment x
Hi @fiona1980@fiona1980, thank you for sharing your experience and the tip about the sickness meds. It’s the sickness I’m dreading the most. I had awful morning sickness when I had my kids (although why it’s called morning sickness when it actually lasts all day is beyond me ). Its stayed with me all these years so I’m not looking forward to that if I get it.
I’ve seen the ice gloves and socks on Amazon, so I might give them a go.
I hope the rest of the treatment gets better for you.
You won’t necessarily experience nausea. I get terribly travel sick and also suffered from morning sickness in pregnancy, but didn’t have any issues at all with it during treatment. One issue with the sickness meds is they can cause constipation, so there are risks in taking them just in case you feel sick. They will give you anti-sickness meds just before infusion, I would personally wait and see how you feel before taking any of the ones they send you home with.
I also tried the cold boots and mitts thing but found it so impractical to be stuck in the unit for hours at a time without being able to use my hands. I did get some neuropathy so maybe I should have persevered!
Yes, thank you. I have metastatic TNBC unfortunately. Found by accident during primary treatment, so probably de novo. I had Pembrolizumab with NAB-Paclitaxel plus a liver ablation, and have been in remission since. I had had EC and just started Paclitaxel when the tumour in my liver was first found. Had a CT scan to understand the source of my abdominal pain after my first infusion of Paclitaxel. The answer was infected diverticulitis but the secondary tumour on my liver was spotted on the scan. I think the diverticulitis flared up because of constipation following the anti sickness meds they had given me alongside the Paclitaxel. I refused them after that. For context this all happened in 22 and 23 so I am doing really well. Pembro worked like magic for me.
I am really sorry to hear that. It sounds like you’ve been through it. It also sounds like you are tough and kicking it hard. Sending you lots of love and positive vibes
Hi- I had Hyperemesis Gravidarum during my pregnancies and vomited 20 times a day. They do have lots more anti-emetics they can try when you’re on chemo. I was dreading the nausea and sickness due to pregnancy trauma, but honestly- it’s been nothing compared to pregnancy. Yes, there have been some days when it’s been there, but the drugs are able to keep it at bay and some days I’ve had nothing which compared to pregnancy when I never got a break, I’m seeing it as a win. I hope that helps xx
…. I was diagnosed TN in January and started treatment on the 9th March … exactly the same plan as yourself except that mine is 16-weeks, then 16-weeks … I think that every trust is different, so don’t think anything of you being 12-weeks and me being 16! I have the Filgrastim for three days after treatment,and these are what stimulates your bone marrow so that you can keep going on the weekly treatment … I’m counting myself very lucky at the moment as I’m entering Week-7 and have had treatment every week, no issues … my liver is under stress, but that’s a no-brainer because it’s working so hard … I drink about 4L of water a day to flush out all toxins, eat 2000+ calories / high protein of about 120g a day …. taking each day as it comes …. my hair started shedding probably after Week-3 and whilst I have still got hair … it is sooo thin, so I started wearing turbans this weekend … I’ve suffered with my skin, 2-weeks after immunotherapy pretty bad and then it clears to start 2-weeks after the next immunotherapy … a pattern there! Everyone reacts differently, but hopefully you’ll have similar reactions to me, a fellow TN, and be ok week on week …. I’m not that chatty on here though I do read and ‘heart’ a lot of posts … happy for you to contact me because there are not many of us TN and it’s reassuring when you hear of someone on the same treatment plan 
.
). Its stayed with me all these years so I’m not looking forward to that if I get it.