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Triple negative breast cancer over 65

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Nell1
Member

Re: Triple negative breast cancer over 65

Hi everyone. Hope you are all progressing well.

Had last chemo session on Thursday and Picc line removed afterwards. What a relief the Picc line was compared to cannulas every time but now it is gone it was lovely to have a steep in the bath on Friday. SEs not too bad mainly tired and just want to doze. Avoiding nausea with medication and small meals.  Oncologist thinks I have done well as my blood tests were OK each time but I suppose I think back to how I was before this started and feeling so fit and healthy.

Planning session and scan for radiotherapy on Monday and then treatment starts 9 September and finishes on 3 October. Roll on 4 October.  Feel like I am halfway through now and thinking about a short holiday before radiotherapy starts as SEs should be better. I have been reading up on tips for radiotherapy on this forum - a lot of very good advice is given.

Best wishes

Nell

 

 

 

 

AngeNut
Member

Re: Triple negative breast cancer over 65

Oops sorry, overkill now - it wouldn't post now it's done it twice! 

AngeNut
Member

Re: Triple negative breast cancer over 65

Morning Ladies, 

Sorry I've not been on here for a while, just had no internet in the bedroom and also needed a break from bathing in cancer chat!

My surgery was 24th May for 2.5 lump (with clear 3mm surround) and 2 affected nodes (nearest breast) - 8 taken so 6 were clear. Having physio for cording but good recovery really. Still hard lump in boob needs massaging now.

My 1st chemo was 24th June so 4 weeks after surgery. I'm having 3x FEC.

Joss, FEC is 3 chemicals and the treatment lasts 3 weeks. It's a strong chemo. The 1st 2 sessions I more or less sailed through, but this 3rd has been tougher as have mouth ulcers and was fighting a urine infection. I've been out and about as much as possible but fatigue does cramp my style. 

Joss - I have not been sick, nor have I opened the extra nausea tablets they gave me.. 😀

There is a nasty taste that comes but eases after a while...

The injections are for  7 days just after your dose and they are white blood cells to build your immunity. My husband does it and they are ok - it's doable!

I wasn't told about those til I turned up for my 1st chemo and the nurse said "There's a nice surprise for you in the fridge!" - I thought it was something to eat like a treat!!!!!!!!!!

 

My hair fell out around day 17 of 1st round. I was ready for it and fortunately my wig arrived same time. Lady fitted and trimmed a few times since to get best look. It's pretty good!

But I do feel the bald look is a sign of a WARRIOR - and we have battle scars to prove it!! 

 

Im so sorry for how overwhelmingly gripped you've been with shock and fear. My heart goes out to you... It's SO good your underarm was clear Joss, that is such good news. I have surprised myself with not crying, but also not being fearful. It's a case of - "Ok then, let's do battle - and I will WIN!! I didn't invite you IN - so you are being kicked OUT - for good!" 

 

Its a a whole new world isn't it - and a whole new language. People also think they know about breast cancer, because they 'know' someone, but really they can't know because we are all different. 

 

 

Much love Ladies - hope you have a good weekend and feel encouraged and empowered. X

 

AngeNut
Member

Re: Triple negative breast cancer over 65

Morning Ladies, 

Sorryvnot been on here for a while, just had no internet in the bedroom and also needed a break from bathing in cancer chat!

My surgery was 24th May for 2.5 lump (with clear 3mm surround) and 2 affected nodes (nearest breast) - 8 taken so 6 were clear. Having physio for cording but good recovery really. Still hard lump in boob needs massaging now.

my 1st chemo was 24th June so 4 weeks after surgery. I'm having 3x FEC. Joss, FEC is 3 chemicals and the treatment lasts 3 weeks. It's a strong chemo. The 1st 2 sessions I more or less sailed through, but this 3rd has been tougher as was fighting a urine infection. I've been out and about as much as possible but fatigue does cramp my style. 

Joss - I have not been sick, nor have I opened the extra nausea tablets they gave me.. 😀

There is a nasty taste that comes but eases after a while... The injections last 7 days just after your dose and they are white blood cells to build your immunity. My husband does it and they are ok - it's doable!

i wasn't told about those til ai turned up for my 1st chemo and the nurse said "There's a nice surprise for you in the fridge!" - I thought it was something to eat like a treat!!!!!!!!!!

 

My hair fell out around day 17 of 1st round. I was ready for it and fortunately my wig arrived same time. Lady fitted and trimmed a few times since to get best look. It s pretty good! But I do feel the bald look is a sign of a WARRIOR - and we have battle scars to prove it!! 

 

Im so sorry for how overwhelmingly gripped you've been with shock and fear. My heart goes out to you... It's SO good your underarm was clear Joss, that is such good news. I have surprised myself with not crying, but also not being fearful. It's a case of - "Ok then, let's do battle - and I will WIN!! I didn't invite you IN - so you are being kicked OUT - for good!" 

 

Its a a whole new world isn't it - and a whole new language. People also think they know about breast cancer, because they 'know' someone, but really they can't know because we are all different. 

 

 

Much love Ladies - hope you have a good weekend and feel encouraged and empowered. X

 

Nell1
Member

Re: Triple negative breast cancer over 65

Hi Joss

oncologist will prescribe anti nausea pills and if the first lot do not work then contact your GP or oncologist for a different one. It's trial and error but Odansetron has worked well for me. I did not vomit just felt nauseous.

My first chemo cycle was the worst one but number 2 and 3 were better probably because the medication was better suited for me.

Glad you have taken the first step and bought a wig.  I found it helped to be doing things to help me through the chemo. I also bought a couple of hats.

your Breast Care Nurse should be able to answer many of your questions if you phone her with a list of questions

re injections to boost white blood cells and minimise risk of infection - a lovely district nurse calls in 24 hours after chemo to give me the injection which is provided by oncologist. She also comes in once a week to flush and dress my Picc line.

your oncologist will decide what chemotherapy combination is right for you but once you know it then the McMillan web site has lots of info about the different types.  Many ladies get FEC-T but I am on TC.

hope you are starting to come to terms with all of this. I knew nothing about breast cancer before all this started but thanks to forums like this one I have learned a lot.

best wishes

Nell

 

 

Joss
Member

Re: Triple negative breast cancer over 65

Bless you for replying. Today I have been to buy a wig. Even for worked up about that! However, lady in shop very nice and private room so another thing done. I should be making the most of these pre chemo days I suppose. Not sure if ignorance is bliss as the vomiting following the chemo sounds just horrendous. How do you get hold of different anti sickness pills if being too sick to venture out? Does the breast nurse prescribe them or do you have to visit Doc and how do you do this if vomiting all the time? What is this I read about giving yourself injections? And what is the FEC thing? Sorry for stupid questions, no one else to ask. Xxx

Whitfield
Member

Re: Triple negative breast cancer over 65

Joss,  clear lymp nodes is great news.  As said this means the cancer has not spread.  I had four out of 24 infected so had full clearance.  It's early days days for you and I felt the same crying a lot.  Do try to get some counselling if possible and use this site for support as much as you need.  We are here for you.  I'm two years since diagnoisis on the 28th August and still here.  I had a 31mm tumour and node involvement.  Chemo x8 , the surgery, including full node clearance then 20 rads.  We are all different and some people do survive long term post TNBC.  Wishing you well.

 

Pam x

Nell1
Member

Re: Triple negative breast cancer over 65

Hi Joss

clear lymph nodes is great news. The cancer has not spread and has been caught early. I had 2 out of 25 lymph nodes affected and the full lymph nodes clearance gave me the most pain. The masectomy scar healed well but under my arm is still a bit numb but also sore which seems a contradiction.

I also felt angry and cried a lot initially as my life was very happy and we had all sorts of plans for retirement which had to be put on hold.  Not cancelled but postponed until next year. I kept thinking why me - I have never smoked, don't drink, exercise etc but cancer happens.  I also did not want to talk about it as that was my coping mechanism. Even now if someone asks how I am doing I give a brief upbeat reply and then change the subject.

all I can suggest is have a good cry and scream in private then wash your face and try to do something you enjoy - by yourself if you cannot face anyone and do not want to talk. My dogs helped as I could talk to them. However everyone is different.

Have you talked to your GP as they might be able to prescribe something to help? Maybe you are still suffering the after effects of the operation.

hope you start to feel better soon. The next few months will be hard but then you will get back to what you were doing before.

best wishes

Nell

 

Joss
Member

Re: Triple negative breast cancer over 65

Thanks Nell for replying. My main problem at the moment is my mental state, just can't stop crying, shaking and feeling sick, never been in a state like this before. Tried phoning the breast cancer support team but they couldn't understand what I was saying was in such a state. Did you have anything like Valium to help you cope, or were you not like this. Don't want to see anyone or go out and communicate with friends via email because of the constant weeping. I know alot of people are going through this but my life was so happy before and now I feel I just want to stay in the house and wait to die. I see the oncologist on 22August. Do you think it  was a good sign that the lymph node was clear? I just need something, just anything that might give me hope.

with love an prayers for you and any reading this. Please tell me something positive, I am almost suicidal..xxx

Nell1
Member

Re: Triple negative breast cancer over 65

Hi Joss

Hope you are recovering well after surgery.  My first chemo session was about 2 months after surgery and started 1 week after I saw the oncologist so I had pretty well recovered from the surgery. TNBC is not necessarily the worst kind as it responds well to chemo and radiotherapy.  After 5 years the recurrance rates are lower for TNBC and we do not have the side effects from ongoing chemotherapy medication.  I was scared at first but now I am trying to look on the positive side.

However chemo is hard and you will need support from Breast care nurse and GP to deal with the side effects of chemo but they are manageable.  My treatment plan was 4 cycles of TC chemotherapy and I have one cycle to go now before radiotherapy in September.  I have found it easier to cope with side effects for the second and third cycle probably because the medication is more tailored for me.  I tried cold cap but gave up and so far my hair has thinned a lot but I still have quite a lot.  My hair is short, fine and silver so probably the hair coming out is not too noticeable.  We have to vaccuum regularly for the dogs so now I contribute my hair as well.

This forum has lots of tips and I have found it very useful to plan ahead on what I will need to cope.  eg Ginger snaps and ginger beer for nausea.

With my best wishes for the future.

Nell

 

Whitfield
Member

Re: Triple negative breast cancer over 65

Joss, we hear you and are sorry you have joined us.  There is a Triple Negative forum that may suit you better.  I'm on that one as well.  There is hope.

 

pam x

Joss
Member

Re: Triple negative breast cancer over 65

Hello, Iam 69 and had a right breat mastectomy 3 weeks ago. It was grade 3, also had sentinel lymph node removed and it was clear. Have only just realised that I have triple negative BC. I wondered why he said no follow up tabs would be of any use. I have been so upset since reading about it on the net this afternoon, bad prognosis etc. The I came across this forum and yours and other ladies who have had this diagnosis too. Am terribly upset as had just about come to terms with having BC then to find it's the worst kind has knocked me for six. My 42 year old daughter who is profoundly deaf lives with me and we have both sobbed all afternoon. Reading all you ladies have and are going through in such positive ways has given me a little hope that I may live a few more years. I see the oncologist on 22nd August. How soon after that appointment and after the surgery did your chemo start. Am very scared about how I'll feel. Thanks for reading, I have no other family and feel so scared. 

Nell1
Member

Re: Triple negative breast cancer over 65

Hi AngeNut.  Hope you are doing well. I have recovered well from second chemo session on 7 July. This time different anti nausea pills worked well. Picc line great as no digging into hand for cannula. Injection for white blood cells no problems.  Gel from GP sorted very sore mouth. I was very tired as you described but giving into a couple of days in bed helped. Lovely district nurse coming in once a week to flush Picc line so I am lucky I do not have to drive to get this done. Ready for chemo #3 on 28 July now and feeling I can cope with it better now. 2 sessions down, 2 to go and then radiotherapy. Surprisingly I still have most of my hair although it has thinned out a bit.  Wig being held in readiness in case I need it after next session.

My experience this time compared to first chemo really show how getting the right medication helps enormously. 

Hope your second chemo session goes ok with not too many problems.

Nell

AngeNut
Member

Re: Triple negative breast cancer over 65

Thanks Nell<
Can't believe how well underarm is coming along and now breast... 
Just has a shower - looked in the mirror and thought - oh my goodness - it's beginning to look a bit 'normal'.

1st FEC was last Friday - side effects not too bad - slight nausea, that vile taste, muzzy head...
Felt quite normal a lot of the time - but you are constantly aware of 'something' whizzing around your body!
I'm eating, sleeping and drinking well. Drove for 1st time (5 weeks) since op yesterday - it was a wonderful feeling of liberty - that I WILL be free when up to it... Fatugue hot 1st time yesterday - Day 6 - oh it wasn't a nice tiredness - felt ill - lay upstairs on bed and couldn't even take interest in the telly ....
Better this morning - just contemplating whether I'm overdoing it driving to get PICC line flushed...

Nell1
Member

Re: Triple negative breast cancer over 65

Very glad your infection is sorted before chemo. The hospital considered giving me an injection to boost white blood cells but thought I would build up without it. I did not push for it because I thought the chemo might work better if my own defences kicked in naturally but I will check all this out at next appointment. This forum gives so much information to better equip us to ask the right questions. It's so useful.  Hope you continue to feel well.

Nell

AngeNut
Member

Re: Triple negative breast cancer over 65

H Nell,

Poor you. 

I was given a box of needles for a week  - started yesterday - day 3 - help bone marrow produce white blood cells - have you not had any? Husband does it...

Nurse phone today about sore boob from Friday - It had been as been uncomfortable still over weekend and felt still infected.

Nurse had spoken to surgeon (on Friday) - he will not touch breast for drainage and suggested if still infected he would stop the chemo and give more antibiotics. 

So this morning when she phoned I asked if she would take a look. We popped over. In the 3 hrs since getting up and moving about it improved!!!! She said it was clean, fine and no infection - thing the antibiotics had had a battle but had won. The misshape is the drawing in and out as the tissue heals. She said it's healing nicely and the hard lump is now fluid not hard. Underarm is still working well and causing no problem. PHEW!

Whitfield
Member

Re: Triple negative breast cancer over 65

Sorry you have been unwell in hospital.  Its cheaper for the NHS to give you the injectionss into the tummy to boost blood cells after chemo and less stressful and horrid going into hospital. 

 

If your having a lot of chemo which most TN people get then ask for the jabs at your next visit.  I did my own but DN will pop in a do them for you.

 

Pam x

Nell1
Member

Re: Triple negative breast cancer over 65

Hope you are still doing well.  I am just home from hospital.  I went down with a urinary infection just when my white blood cells hit zero so it was intravenous antibiotics for 4 days which sorted the problem.  Home now with another 4 days antibiotics.  You were very wise to get antibiotics for your infection before you get a big problem.  I had done dentist and chiropodist before chemo but got hit with infection anyway. Had to have a single room because of  risk of infection. It was amazing how my white blood cells were 0.2 on day 10 and today (day 11) they were 0.6 without anything other than antibiotics for infection.  Suppose that means I am healthy until chemo knocks me for 6.

Feeling great now so hopefully next cycle will not be as bad. 

Nell

AngeNut
Member

Re: Triple negative breast cancer over 65

Ist chemo yesterday - went smoothly not too bad night - ended up taking paracetamol for what was like sinus headache. Burping a lot .

Had a good day - couldn't believe how well I felt - umpteen alarms on phone for pills! 

I was like the Duracell Bunny pottering about and tidying. But shattered this evening so really hope I sleep. The reflux starts though - ugh. I love ginger biscuits and Im drinking plenty.

My underarm has been great since the the surgeon was beating me up last Wednesday. Can see how long my underarm scar is now - didn't realise before with it permanently on a huge bump!

My breast had hard lump again next day, so when I went for 1st FEC yesterday, I mentioned it. They are emailing the surgeon for an appointment next week. The lump is also quite large now, red and bit sore. I am on antibiotics for it. That's the 2nd time I'll see the surgeon this week - my next appointment was meant to be June 2017!!!!!

Nell1
Member

Re: Triple negative breast cancer over 65

Thanks Pam. Emand is on my list for next time. Also found ginger snap biscuits help with nausea.  I am never travel sick and have no children so nausea came as a surprise

Nell

Nell1
Member

Re: Triple negative breast cancer over 65

Hope things improve for you going forward. I had 250 ml and then 150 ml removed 2 weeks later and that gave me a lot of relief. Seroma nurse said there are  different painkillers from GP that target nerve pain eg Gabapentin. If your pain is nerve pain from lymph node removal they might be worth asking about.  My pain was bearable and I was reluctant to take more stuff when chemo starting.  Must admit biggest pain is from lymph node rather than masectomy. 

Nell

AngeNut
Member

Re: Triple negative breast cancer over 65

Glad you feeling better and things are more positive, Nell.

i went to the hospital for draining. As I said boob was hard and v sore.... 

Nurse called my surgeon who happened to have a clinic. 😷

Well he went in and out of my boob and underarm like a fiddlers elbow. 🎻

I had eyes closed so didn't know where he was going next... Must have gone in about a dozen times... 💉

Afterwards, I said to the nurse "Ooooh he wasn't nice and gentle like you ladies ... "

"He's used to doing it when you're asleep!" she said.

Hecwas also squeezing to push the fluid out, which they hadn't done. 

It's quite sore now after as usual. 

 

I've ended up with strong antibiotics for a week to make sure no infection developing in the boob. 

Picc tomorrow and 1st FEC on Friday. 

My boob is not to have a needle in it at all now for the foreseeable I was told. 

 

Whitfield
Member

Re: Triple negative breast cancer over 65

Nell,  The drug you need for the sickness is Emend.  They can also give you injections for boosting your white blood cells which you do at home on day 7 after chemo.  This should help with infections.

 

I'm a year and a bit pass the node clearance and lump removal and still get pain under the arm from nerve damage but exercise will help.

 

Pam x

 

Good luck  xx

Nell1
Member

Re: Triple negative breast cancer over 65

Now that I have passed the 6 weeks after surgery my arm suddenly seems a lot better and the swelling from fluid is diminishing without more draining. Maybe it is because I am feeling a lot better 6 days after chemo.  Woke up during the night and suddenly felt better. Waking up was an improvement as I have not been sleeping.  My lovely Breast Care Nurse , Angela, phoned yesterday and reassured me I had done the right thing when I went to A&E with the nausea.  I knew that all I wanted was a different prescription but the doc there wanted to go through full triage with blood tests and intravenous injection of anti nausea medication. I did not want any unnecessary injections into veins so that can save my veins for chemo.  I knew I did not have an infection - it was just the nausea. In the end he was very nice and did a urine test and chest X-ray which were ok and my lovely husband drove down to the late night chemist to get the pills. Angela said I will get better anti nausea pills next time.

I think I will have to be careful about infection now as my resistance is at its lowest and I feel like doing things now.

I did not have reconstruction as I wanted a fast recovery from the masectomy and now that I have my proper prosthesis it makes wearing my bra easier. Maybe because it is more balanced now. My wound did heal very quickly and cleanly with no infection. It was just he nerve pain from the lymph node removal that was the problem. My tumour was aggressive so it was good they did not leave anything behind.

Hope you do not mind the long update but maybe it's good to know that suddenly everything gets better. And also do not be afraid to insist on the treatment you know is right for you if you have to go to A&E.

Nell

AngeNut
Member

Re: Triple negative breast cancer over 65

Well that's 2 of us!
I'm glad your nausea was sorted.
Yes I've read we need lots of water...
I'm with you on the fluid and bra nightmare. Friday 220ml was taken from underarm and 10 from boob.
I'm getting boob looked at tomorrow, it's like it's got rocks in it. Underarm not bad for now. Surgery was 4 weeks today and this swelling and soreness has been the worst thing.
Nell1
Member

Re: Triple negative breast cancer over 65

It's good to know I am not the only oldie with TNBC.  Getting over 1st chemo session. Had terrible nausea and finally went back to hospital. They prescribed a different anti nausea pill and now I feel much better. Was initially given Metoclopramide (seemingly it is cheaper) and then Ondansetron which has helped. Wish I had gone back to hospital sooner. Also nurse had problems getting cannula in. Next time I will drink more water just before and ask for my hand to be warmed up in hot water before they try to put cannula in and also before cold cap goes on.  I am using Philip Kingsley no scent,no colour shampoo and conditioner to try to keep my hair.  Time will tell if it works but it makes my hair feel nice.

On a positive note, my arm is a lot better, less sore and almost full movement. Maybe soon completely better?

AngeNut
Member

Re: Triple negative breast cancer over 65

Haha - SNAP!
You too have your head on the side! 😂
I just can't find out where to turn it.... 🤓
AngeNut
Member

Re: Triple negative breast cancer over 65

Hello,

I was told on Friday that I had TNBC - and I was 68 on Sunday.

I had surgery on 24 May - 3cm lump and 2/8 nodes affected.

I go for 1st chemo intro tomorrow, line Thursday and 1st FEC on Friday. 

You have encouraged me, thank you! 

Whitfield
Member

Re: Triple negative breast cancer over 65

Hello Nell,

 

you ou will get there.  Exercises are essential.  I had many problems with shoulder and cording but kept st them.  I couldn't get arm behind me at all at one point but now I can reach behind my back.  Just keep plugging on.  

 

What at I would say with chemo is you need to take your meds carefully e.g. at the right times.  I made a homemade drugs chart to help as my mind wasn't sharp.   My antisickness tablets did not work so got very sick.  They can change these if you have problems to Emend.  It's very expensive but ask if you need them.  You also need to drink a lot of water to flush out chemo, steroids etc.  Start drinking 2 to 3 Ltrs of water a day a good three days before chemo to help kidneys so they're clean when you have the first session.

 

you can do this and we're here for you.

 

pam xx

Nell1
Member

Re: Triple negative breast cancer over 65

Thanks for the reply Pam.

so far arm is ok and pain almost gone. I still have not recovered all movement in that arm although I have been doing my exercises as I know they are important. Going to see physio to see if she can help. Biggest problem is fluid and soreness around wound making wearing a bra difficult. Have bought several sizes and types to try to get a comfortable one.

TC Chemo starts Thursday so next challenge.

Nell

 

Whitfield
Member

Re: Triple negative breast cancer over 65

Hello Nell,  I'm 57 and had my diagnosis 2014.  TNBC 31mm lump with node involvement.  Check first 8 rounds of EC last four piclitaxol, then surgery (lumpectomy, Full node clearance, then 20 rads).  Tumour in breast reactive well to chemo and as did the cancer in nodes.  Surgery showed lump gone and 4 out of 24 nodes were affected by the cancer.  That said full pathological response so no live cells showed in what was removed.  Since then pain under arm, lymphoedema in remaining breast and cording.  The latter may not happen you you.  Exercise is the key to getting movement back and reduces lymphodeama.  Cure t,y ha I g pain management appointments as pain after such surgery is common.

 

I know being 65 you will worry but TNBC can has been knew in some cases to respond well to chemo and if you keep well, eat well you have the same chance as the rest of us.  

 

Do stay in touch and get yourself on the list for counselling, yoga and the other courses as they get booked up quickly.

 

sorry you are here but wishing you well on your journey.

 

Pam x

Nell1
Member

Triple negative breast cancer over 65

I have been diagnosed with TNBC at age 66. It seems to occur more often in younger women and I wondered if there are other older women out there with TNBC and what their experience has been.

I have had a mastectomy and lymph node removal. 2 out of 25 nodes had cancer. My chemotherapy starts next week to be followed by radiotherapy.