Hi all
@lillytiger @diamonddapple i hope treatment went well this week without any hitches. Round 3 does get a little tougher but is so worth it when its beating cancer back. Keep up the good fight. You got this!
@gerry22 i am so happy to hear you have a surgery date and are through EC, hopefully you can regroup and feel good going into your Op.
I have literally fallen apart and pulled myself back together since i last posted. I had 3 days struggling to process and i didnt recognise myself (dark place) so i sought help from a mental health professional and i have a strategy and feel confident going forwards now. There is so much support out there for us, and these battles that we are having with cancer throw some mean curve balls. Do reach out and use the support!
I will summarise where i am at treatment wise but please remember that i am a rare bird and my medical team have been clear that my situation is so far from common.
I met with my consultant on monday night, my tumour is actively growing again, its big and very painful. I am confirmed chemo resistant to paxi and carbo. We are stepping into oncology emergency territory (not something you ever want to hear), surgery is scheduled for 26th April (or sooner) when they expect my neutrophils to be good enough. They are doing an emergency left breast mastectomy with rotter node and full axilla removal. They have made it clear that surgery is to save my life (they think the tumour growth is starting to look anaplastic) and we can revisit cosmetic outcomes at a later date. I am ok with this. Although i can admit that the scan showed 2 new (painful) cysts in my right breast and i have been battling the paranoia regarding these!
My consultant is also considering a single dose of radiotheraphy next week to help knock the tumour back before surgery. They are scanning me evey 3 days and my consultant also phones me to ask about growth in between. They are on it!
I am focusing now on getting as physically and mentally fit as possible for surgery…simple goals drink lots, eat well, walk everyday, and sleep plenty. I have put counselling in place to help me deal with the outcome of surgery and the treatment going forwards. One thing at a time!
Now i have got my sh*t back together and have a clear strategy, i can say i got this! My attitude has always been that if one person has had this crap happen to them and survived, then it is survivable and i will do just that!
I am off to spend some time at the seaside today. I always find watching the waves so calming! If you can, do something lovely for yourselves this weekend. Big hugs. ANNA x
@anna_x51 Gosh Anna what a hard time you are going through, I admire your ability to ‘pick yourself up’ and really good that you reached out for help in doing this. Our journeys do take us to very strange places in our minds, places that we maybe never knew existed or at least never needed to visit before 
It is so reassuring to hear how well your onc team are monitoring and supporting you. I wish you strength and healing on your continued journey. Please keep us updated on your progress and I hope the coast air and sea did its job 
xx
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@anna_x51
I totally echo everything Jerry has said Anna. I myself started
therapy after diagnosis and
its been a godsend.
Take everything a day at a
time and remember you might be a rare bird but your onc team have seen it all before xxx
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Hi @lillytiger @diamonddapple i hope treatment went well with no hitches and you are not too fatigued. It gets tougher with cumulative dose as you get into the final stretch but you can do this. I remember feeling quite low early in round three as more side effects kicked in. It may not be the same for you but if it i would say its OK to feel all over the place.
@gerry22 i hope you are recovering ok from EC and getting to enjoy your time before surgery.
I had my surgery last friday and i am home and i feel good. To be honest just being almost 3 weeks since last chemo i feel like i am starting to turn a corner and the fatigue is lifting.
I had a single mastectomy with full rotters node and full axilla clearance. The pain is manageable, i am day 4 post surgery and i on just taking ibruprofen and paracetamol for pain now with a stronger pain killer before bed. As its only 1 side I can do most things by myself. Lifting my arm above shoulder level is a way off but the week 1 exercises are ok and not particularly painful.
Feedback on surgery was good. The tumour had good margins, the cancer had spread to an additional rotters node and to 1 axilla with another looking abnormal, hence they were all removed. Most of the pain i have is in the chest muscle from the removal of the rotters nodes. The consultant was happy there was no inflammation areand the nodes so i am remaining hopeful that this is not metaplastic. He wants me to have radiotheraphy as soon as wound is healed.
I now have an excruitiating wait (now 4 weeks) for histology on tumour and nodes before MDT can decide on chemo treatment going forward. We have everything crossed and i am just focusing on getting as healthy as i can be for whatever comes next xx.
Take care you lovely people. Big hugs X Anna xox
Ps. I am happy to answer any questions on surgery if you have any.
Oh wow Anna I am so very pleased to hear from you. You have been on my mind a lot.
That all sounds really positive and glad you aren’t in too much discomfort.
Keeping everything crossed for your histology:crossed_fingers:
.
Unfortunately I didnt have my Taxol last Friday as my platelets were too low although they have said I can muss that one and have Cycle 4 this Friday as long as my bloods are ok.
I must admit I’ve not felt so washed out this week from missing a dose.
Having full bloods taken tomorrow so .
Keep up the positivity Anna and like I said so happy to hear it’s all heading in the right direction.
@lillytiger how have you been?
@gerry22 have you had a celebratory drink or 2 yet hic hic
@diamonddapple all well with me, have had a great holiday in Ireland and heading back to UK tomorrow. Defo managed a couple of drinks whilst here 
Shame about the delay to treatment but you’re getting there. Good luck with your bloods for Fridays treatment
@anna_x51 Great to hear from you and good to hear your surgery went well, you’re positivity will stand you in good stead. The timing of your post was quite timely for me (sorry if that sounds selfish!) I have had such a good break this past week and have felt very good and removed from all things cancer but woke up this morning dreading the next stage of the journey. Had a real wobble I must say, I’m dwelling on how I’ll feel after the op and what results come back from pathology. I guess we deal with what’s immediately ahead of us at each stage it’s the only way to do this. A four week wait is so unfair for Anna, I hope it flies by and you get positive results
@lillytiger hope your treatment is going to plan and that you are managing ok.
@gerry22 sorry to hear you have had a wobble but hold the thought that halfway through your treatment your ultrasound showed no evidence of disease which is amazing.
Hopefully you are feeling emotionally stronger and ready to move forward.
@anna_x51
Hopefully your recovery is still going well and you are getting stronger day by day.
@tigerlilly
I hope everything is ok with you.
Unfortunately I didnt have Cycle 4 yesterday. My neutrophils were too low, again. My oncologist is going to reduce my chemo dose going forward.
Wishing you all a relaxing weekend xx
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Hi All
@diamonddapple i am sorry to hear you didnt get your treatment but pleased to here your medical team have a plan. A lower dose sounds like a good way forward and the break should hopefully make the cumulative effect of round 4 easier to manage. I am 3 weeks on from round 4 day 1 and am pleased to report that the dizziness stopped after a week and the fatigue is much more manageable. I will cross everything for you for next week.
@lillytiger i hope you got on ok and side effects are manageable.
@gerry22 i am so please to here you had a good time in Ireland. Having a wobble regarding surgery is normal. Mine happened quickly so i had less time to worry but i went into surgery with bloods at the low end and still fatigued from round 4 and peripheral neuropathy annoying me like crazy. You should hopefully be better recovered and feel good going in. Which will help your recovery.
My recovery is going well. I am just on ibruprofen now and to be honest i could probably go without a dose during the day now as it isnt that painful when i am moving around and using my arm. Its when i wake up during the night that it is stiff and more painful. The pain and stiffness is mostly due to swelling which is going to take a while to go down. I am walking everyday and exercise are all ok. The exercises are essential to keeping the shoulder mobile. I am already ok and used to how it looks, and so is my partner. And thats with it bruised and swollen and looking far from its best!
I cannot wear a bra yet but the softy they give you can be tucked into any top and stays with a bit of blue peter magic (double sided sticky tape) and gives you a bit of padded protection. I used it when potting some seeds this week. I am wearing mostly button up shirts as they ate easy to put on and do not rub (the wound is not covered with a dressing only steristrips along length). I can also wear baggy t shirts with a big neck hole as i can easily get myself in and out of them.
I wish you all a great weekend lovely people. I have my folks visiting next week for a few days so we will be spoilt with my ma’s cooking and them dragging us out for dinner! I also have a wound check on Thursday which will tell me if i can return to work the following week.
Take care, big gentle hugs! Anna xx
@diamonddapple @anna_x51
Hi both, thank you so much for your supportive wishes following my ‘wobble’ last week. I am pleased to say that I have got my head back in a good place. It was helpful to hear about your post op recovery Anna and being able to do most things for yourself. I had an appointment last Friday with my surgeon who said how pleased he was with my response to chemo, just as you said diamond I’m keeping that positivity firmly in my head! I hope your next chemo goes well and that the reduction helps. I also had a reduction of my Paclitaxal for half of my cycles due to Peripheral Neuropathy, it really made all the difference and neuropathy is now gone completely……I know your reduction is not for the same thing but it goes to show that tweaking here and there can make a big difference. I hope you will be spoiled rotten by your family Anna! Happy thoughts to you guys x
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Hi everyone
Sorry I haven’t responded for a bit. I’ve got so behind with everyone’s updates.
@diamonddapple i had to miss chemo last week too as I had neutrophils. Sorry to hear about you. I was 0.2 so no chance of pulling it back. Had 5 daily injections to help so hope it’s ok for this week They said I will need a reduced chemo dose this week too.
Also I had an ultrasound scan and it showed no sign of cancer in all 3 lumps. They said my lymph nodes looked normal. It’s really good news but I was so flat with my low neutrophils and all the treatment left still to go 
@anna_x51 Glad your surgery went well. You’re being so brave 
@gerry22 so lovely to hear you got away to Ireland.
Take care everyone 
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Hello, I hope you don’t mind me joining you here, I’ve only just found this thread although have been looking around for a few weeks.
I too have TNBC however with apocrine features( which I believe is an unknown!! wondered if any one had similar? I had no lymph node involvement and had a 12mm stage 2 growth which was removed with clear margins in January.
Iam into my second EC of 3 which I was dubious about accepting at first however Iam now worried about the next paclitaxel x9 regime - any positive thoughts would be great fully accepted.
Many thanks B x
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Hi
@lillytiger sorry to hear you neutrophils were low and you missed treatment. But delighted to hear the result of your US and shows that even with missed treatments your cancer is responding really well to your chemo!. Its good that your medical team are lowering your dose and hopefully the cumulative effect may not hit so hard. We all have a wobble, cry, scream and shout when treatment doesn’t go to plan, its normal! You have got this! And we are here whenever you need. I will have everything crossed for you this week!
@bettysmum its good to hear from you but sorry to hear that you are in this tnbc club. I have not heard of tnbc with apocrine features. Its sounds like surgery came first for you. Its great that you got clean margins.
We all started off the other way around ie surgery following chemo. i have gone though 10 weeks of pembr paclitaxel and carboplatin and whilst not the greatest experience it was doable. The paxi was weekly. Side effects for me were manageable and i was able to work full time (minus half a day for chemo) at home. For me the fatigue was bad on day 4 up until week 8/9 when the cumulative effect meant recovery took longer(2/3 days). I was told EC was far worse but benefits from 21 day cycle giving longer recovery times. How are you getting on with EC? And how was surgery recovery for you? Its sounds like you have already overcome so much! Paxi is just the next step. You got this! There is a whole community here to offer support.
Big gentle hugs! Anna
Thankyou @anna_x51 for your welcome it’s good to hear your experiences with weekly paclotaxil went well. My experience of EC ( which has been 3 weekly) was similar and I consider myself quite fortunate that I got off lightly with no nausea or sickness, I did however have tiredness and a muzzy head for the first days afterwards after treatment. I was advised to drink plenty of water and I still do which I feel helped clear it from my system.
I also suffered with intense indigestion and reflux however had some good effective treatment from my GP that helps.
Good luck fir your next step I hope it’s gentle on you x
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Hi @bettysmum glad you have joined our chat but sorry to hear you have tnbc. Good that your experience of EC was without too many side effects as, like @lillytiger I’m not looking forward to it.
@lillytiger sorry you missed cycle 4 last week, like me but glad they are also reducing your chemo. Keeping everything crossed that cycle 4 can go ahead this Friday. The chemo team asked my Consultant if I could have more belly jabs to increase my neutrophils but she wanted my blood to come back up on its own accord.
And I even invested in the life mel honey to increase my neutrophils 
.
That is brilliant that you had a usound which showed no evidence of disease. Hopefully this will put you in a better place emotionally.
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Morning ladies
Pleased to report that Cycle 4 went ahead yesterday. Now halfway
through chemo yay.
@lillytiger yours went ahead
yesterday too.
@anna_x51 I hope you had a lovely few days with your family and were spoilt.
@gerry22 not long now for your next part of the journey but glad Anna has given us a positive insight post surgery.
@bettysmum hope you have had a good week.
Wishing everyone a positive weekend in the sunny weather xx
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Just revised the aetiology of TNBC and the recurrence rates !!! I haven’t read much recently (diagnosed in November 2023). I’m struggling with my 2nd Docetaxal (had X3 EC already). Think it actually helped me as a reminder of how bloody aggressive this breast cancer is and therefore why the chemo is so harsh.
Weirdly I feel a bit more peaceful about it, although the thought of at least another week feeling like hell fills me with dread and think my husband will have to drag me in for my 3rd and final Docetaxal !!!
Praying I never ever have to go through this again 
Sorry to hear you are struggling with Docetaxal vibby.
How is everyone else on this chat getting on?.
@gerry22 is your surgery imminent?
Hi @diamonddapple and all on this group. I am now almost 6 weeks post last chemo/Pembro and am very pleased to say that I feel very well and getting my post treatment energy levels back up. Taste back to normal, Peripheral Neuropathy in fingers (and in face a little) all gone. Unfortunately some ongoing nail damage but they will grow again. Hair (only on head though ) growing well, looks like my sons buzz cut! I have my surgery tomorrow, right sided mastectomy with no immediate reconstruction as I’m have radiotherapy next. Having experienced some wobbles about losing my boob now that it is imminent I feel ready to face this next challenge. @anna_x51 It must have been hard for you to head into surgery without having much recovery time from treatment. I hope treatment continues ok for all, it’s amazing how we can all dig deep (even when we don’t want to) and find the resilience to overcome our fears or at least face them head on. Virtual hugs to all xx
@gerry22 so pleased to hear you are feeling well 6 weeks post treatment and are focused on surgery tomorrow. Sending you a massive virtual hug. Look how quickly those 6 weeks have gone and in 6 weeks time your radiotherapy will be imminent, if not already started. Just take it all one day at a time, which is what I do.
Some days are crap but then we dig deep like you say and carry on with this ride, and the end of treatment gets nearer xx