Treatments

duxx1234

Hello everyone, I have just joined this forum. I am 67 years old and I was diagnosed with Stage 3 19mm TNBC late November 2017.  I had a lumpectomy and 3 sentinel nodes removed. Two out of three had cancer deposits so I then had an ancillary clearance where another two out of 22 nodes had small deposits of cancer.  I am starting chemo next week and wonder if anyone else is having similar treatment. I am having chemo (don't know which drug) every third week for three months, then chemo (drug?)weekly for 12 weeks and then 30 doses of radiation. When I tell people this regime of treatment they all looked shocked which makes me anxious.  I know TN cancer is a nasty one, so I'm assuming they are hitting it hard? Would love to hear your views on this.  I have been in such a state of shock, I haven't asked the appropriate questions and I won't get a chance to talk to my oncologist until next week. Thank you for any help/advice.

[Deleted User]

Hi @duxx1234, your chemo and radiotherapy plan sounds fairly normal to me. Everyone’s treatment is tailored for them. I had stage 2B Pure Micropapilliary Cancer with 5 cancerous lymph nodes. I had 6 months of ACT chemo, followed by 5 weeks of radiotherapy and one week of the boost/ booster (forget the exact name now!). People are often shocked at how much we go through with treatment and aren’t sure what to say. With the support of the people on here, and the support of those around you, you will get through it. I know it can be daunting. It will be better when you know more of the details and can get onto having treatment. All the best. x 

SoldierCrab

Hi @duxx1234
That sounds exactly how mine was planned out for TNBC so dont panic..... 
People who have not experienced Breast Cancer themselves really dont understand the treatments we go through.


Do you have a breast care Nurse? https//www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

https//www.bcna.org.au/resources/  Do you have a My journey Kit? 
Focus on one step at a time Duxx1234 you will get through this ... come here and chat there is usually always someone around no matter what time it is . 
Soldier Crab

duxx1234

Thank you for your response LucyE.  I'm not sure of all the terms used here yet, ACT chemo? What is that? How long have you been finished your treatment? 

Mollygirl

Hi @duxx1234, welcome - sorry you're here of course. I also had TNBC. Yes, it is nasty. And yes, they will hit it hard. And yes, it's not common - only about 10-20% of all breast ca.  It's common to be found between mammograms as it's often fast growing. But the great news is that it usually responds really, really well to chemo.

High end delivery chemo is how I explained it to the uninitiated.

I had 3 weekly chemo for 6 cycles. 3 of FEC and 3 of Taxotere. I won't lie to you it was bloody hard and I never thought it would be over - but hey here I am all done and dusted. The effects of chemo are accumulative. First one... Ok I can do this, second one ...oh gosh I'm slammed, third one .... I'm down ( but I'm not bloody well staying down ) and so on. I had chemo on a Friday and found by the Monday I was on the downward spiral but found by the Friday I was on my way up again. 

Youve already had your lumpectomy and nodes clearance - well done - that's a big hurdle you can tick off!  

Can you take someone to your onc visit. It's really hard to take everything in yourself. If you think of questions write them down to take with you. I couldn't think of anything at first I was in such a muddle. You'll get literature about you chemo too and stuff on how to look after yourself during chemo too. 

We we are here for you. Xxxooo

LMK74

Welcome @duxx1234, sorry you had to join us all. In the beginning it's very scary and daunting. Try not to worry to much regards to chemo. It's the gold standard chemo for most of us. Ac chemo is a two combination chemo given three weekly by four treatments. Taxol is given weekly by 12. Some ladies though have it fortnightly. I was  petrified at the beginning but over all chemo was not the worst thing. I was never sick on either combos. I did chemo first and finished in July last year. I then had a mastectomy and 30 radiation treatments. I finished in November last year. It's a long road but very doable. The support you get here is amazing. 

[Deleted User]

Hi again @duxx1234, I finished chemo almost 2 1/2 years ago, but my last surgery was just over 6 months ago. I found chemo fairly manageable and was able to work 4 days a week. I was very tired though. I actually gave up most social media during chemo and I found this easier at the time. There's no wrong or right. Just take it step by step, trust the professionals, but get a second opinion if you feel you need one. The Cancer Council has 5 free counselling sessions which are amazing and can be accessed over the phone. The nurses are a great support as well. 

 Like @LMK74 I had 3 months of AC which is a combo of Adriamycin and Cyclophosphamide (I think that's right ?!), followed by 3 months of Taxol. I have some side effects now, but I work full time, have just got a permanent position and I was house hunting today! I think life is good for me now, despite my health issues and being a bit stuck in a post cancer daze. My aim this year is to start volunteering and to give back in a positive way. I remember what it was like in the early days and it was really difficult. Something in you changes when you are faced with such a daunting disease.

 Just know that we are thinking of you and that you will be finished chemo and radiotherapy before you know it. Radiotherapy was actually quite a quick process when I got in there and the staff were lovely. The routine becomes a bit of a comfort. I used to close my eyes and imagine I was on a beautiful beach. I do this with most scans, especially the yearly check ups which I still find quite stressful.

There are lots of groups on here with people with more recent experience. I always tried to retain a sense of myself beyond being a patient, or someone with cancer. This has helped me to be more resilient and to stand up for myself and ask questions when I was unsure. Never be afraid to ask for something to be repeated, or written down if you are unsure. There are times where I wish I had done this. All the best. x

[Deleted User]

I meant to say it's also good to take someone along to appointments with you for support. All the best. x

socoda

Hi @duxx1234, Welcome to the forum but sorry that you've joined us. Just thought I'd let you know that the only silly questions are the unasked ones, so utilise all of the experience here. The sharing and caring is phenomenal and together the knowledge base is huge. Also I don't know where you're located but ask about a Lymphoedema clinic or a Lymphoedema nurse so you can be monitored after having those 22 nodes out (doesn't mean you will get it but better to be aware and informed ). And lastly sending a big virtual hug and wishing you all the best. Keep us up to date with how you're doing. Xx

Sister

@duxx1234 Like you I have just started this experience and am still confused and overwhelmed by everything.  I have found by trawling the discussions on this site, I have picked up so much even if I don't understand the terminology.  Then when I need it, I can go back to discussions and get a clearer understanding. It's also helped with formulating questions to ask the doctors or just plain venting to people who know what you're going through. Everyone here is so supportive. And there's no dumb questions. Unfortunately, I suspect in too short a time, we will know more than we ever wanted to and will sound like experts, too.

primek

Hi and Welcome. You are likely on ACT regime. I was on this  plus herceptin for a different sort of breast cancer but friend who had tnbc had this regime . It's common treatment just people who don't have cancer don't know about how hard treatment is and how long it takes. Ask any questions you want. No question too silly. Kath x

duxx1234

Thank you all for taking the time to respond. I went to bed feeling less stressed and more confident last night. I am soo glad I have found this forum of such supportive, caring women. Still trying to navigate my way around the site  (I'm a bit of a gumby with technology

onemargie

Hi there @duxx1234 I was diagnosed may 2016 with TNBC aged 43. I had 8 rounds of dose dense chemo two weeks apart. I had 4 rounds of AC then 4 rounds of paclitaxol. I didn’t have the lymph node involvement so your chemo meds might  be different to mine. Like @Mollygirl says it responds really well to chemo. Rest assured you will get through it. It can be shitty but it is doable. Don’t be afraid to ask for support from friends and family. You don’t have to do it on your own. And if someone offers to help please take it you will soon find out who your true friends are and which ones are full of shit. Try not to google anything, most of it is scary and not correct, take someone with you for all of your appointments as it’s easy to forget what you are told with the emotion of it all. Also touch base with your local bc support group and sign up for the look good feel better program too. Hope this helps.  Biggest hug. Margie. Xx 

Mollygirl

Good one @onemargie, forgot the Look Good Feel Betterprogram. Must be my chemo brain - LOL- I drove to work yesterday instead of the GP - doh, haven't worked for 8 months. Go the chemo brain...

@duxx1234, if you google Look Good feel Better you can book yourself in. It's really worthwhile doing. I wasn't convinced as I'm a bit reclusive at times - but I loved it. Just to be around a couple of other ladies In the same boat was awesome. You'll also get some good tips on headwear and wigs. I had a soft bamboo head night cap thing - but it was winter and some cool winter hats and bandanas. It was strangely liberating to lose my long beautiful hair - now it's really a nightmare at about 1cm and mangy cat like at the back

Mollygirl

Sorry mucked my post up...

damn hair - survival is more important right!!!?

@duxx1234, have you got a start date for chemo yet?  Where are you having chemo?  You will probably have an info session before or day of with one of the nurses. They will talk to you about how to care for yourself during chemo - mouth care, bowels, meds, diet etc. If you have a breast care nurse, use them, lean on them. They are a wonderful resource and it's to my regret I did not utilise my amazing breast care nurse fully because I'm so stubborn. 

Breathe in, breathe out. We know you can do this... We did. Xxxooo

duxx1234

Hi@Mollygirl  I am starting chemo next Weds 10/1/18 at Holy Spirit Northside at Chermside. I am having a portacath inserted at 7.30am and then chemo.  Yes, I have a wonderful breast care nurse and I will be dependent on her I know. She has taken me down to the day Oncology unit and run through everything with me. She has already booked me in for Look Good Feel Better on 29/1/18. I have already purchased a couple of bamboo hats - don't want to go down the wig scene at this stage; it's too hot here in Bris. My own hair is very thick, so it will be a lot cooler when it falls out!! And yes, survival is more important than hair! Maybe in Winter when I'm still in the thick of treatment, I will revisit the wig. 
Initially I was very upset because this cancer is not a 'common' cancer and is very aggressive but comforting, encouraging words from yourself and others who have TNBC have helped me a lot and I'm feeling more confident about the outcome. Thanks so much and good luck with your recovery!!  x