Triple negative breast cancer forumThank you for replying Gerry22, my tumour has visibly increased in size, I'm desperate to start treatment. Have you had any bad side effects so far with your treatment xx

Hello,

I’m new to hear, and found your thread very informative and really get comfort reading all your support for each other. I was diagnosed with TNBC stage 3, this was 6 weeks ago (my biopsy results came back inconclusive twice) they were uncertain if it was HER2 pos or TNBC, protocol says to treat as TNBC, has anyone else had this? (the worse weeks of my life not knowing what was happening and the wait) just started my treatment of chemo. Pembro Weekly and 3 week cycles of Carboplatin & Paxitel for up to 8 cycles then will need surgery possibly a mastectomy due to a 7cm mass (1 x tumor 2cm and 2 at 5mm). CT scans show it’s hasn’t spread to lymph nodes, (still worried as it can travel other ways) I’m just keep everything crossed. (Worrying time not knowing what happening inside our bodies). I’m feeling okay for and just tired now and again.
I know we’re all on journey but I love your positivity and watching your journey’s. Hello from me x x x

Hello sharon-brin welcome to our group.
As you will know everyone has their own individual cancer journey with highs and lows even if they all started on the same treatment plan.
@gerry22 I hope you are recovering well from surgery.
I had the last of my 12 weekly Paclitaxel yesterday :raised_hands: and ready to start EC this Friday so keeping everything crossed my bloods are ok. I must admit I’m looking forward to not having to go to the Chemo unit every week.
I must say my Taxol journey has been ok apart from feeling washed out and tired after the main cycle days 5-8 so lets see how it is with EC.
@lillytiger are you still in sync with me and you too start EC next Friday too.
@anna_x51 how are you feeling and have you had your results.

Sending virtual hugs to you all for a restful and positive mindset weekend x

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Hi All
@sharon-brin i am glad you found us and that our update offer some comfort. I hope round 1 is going ok for you. I was also weekly ER+ at 3, which i did not know at the start but was informed yesterday after mdt as my post mastectomy histology was in. They are now retesting my ER, but suspect it will be 0 now. I think 4 or below with er with her/progest both negative is considered clinically TNBC.
@gerry22 i hope the surgery went well and recovery is going well. You are a :star2:! I must admit that on day 3 i felt more sore and a little sorry for myself and had a good ole cry sitting in my hospital bed but it doesnt last!, i am sending a big hug to you! I am 4 weeks post mastectomy and have a really good range of motion back, whereas at the start i could barely get my elbows up at the start with exercises 1 and 2 and exercise 4 felt like torture. Above the scar the tissue /chest also felt so hard and has now thining and a bit looser. Every few days with the exercises i could see the improvement and my t-rexness (how my kids described me) diminished. Dont beat yourself up if the exercises are a struggle, it gets easier!
In terms of how to adjust to my new look. I didnt even consider wearing a bra at first and then when i did couldnt wear the mestectomy bra the hospital provided as it has a big seam that rubbed on the scaring under the arm. So i went online shopping at m & s and found a soft no wore bra that sips up at front and got it in a larger size chest diameter wise and i wore it with a softy prothetic or when its in the wash soft balled up socks :sweat_smile:
@diamonddapple @lillytiger, woohoo i should also start EC next week! My results came back and i do not have metaplastic breast cancer or any other form or rare breast cancer which was suspected due to my chemo resistance during neoadjuvant. I am confirmed tnbc no special type (although they are retesting ER), I will be having EC for 3 to 4 cycles, with pembro which will continue for 13 cycles in total. Followed by 3 weeks of radiotherapy. They are also considering 6 monthly denosumab (but only uf my dentist gives me the all clear) for 2 years and letrozole chemo tablets for 5 years. They are throwing everything at it now! Of course i could become chemo resistant with EC too but there are still other options for me to be. So i am very happy which sounds weird considering that i am starting again after first chemo failed but having seen how bad the diagnosis could have been, i feel relieved and very optimistic! I have also had a 6 week beak from chemo which has helped me regroup health wise.
Note i has 17 nodes removed but histolgy confirmed only 1 rotters node was cancerous with 1 axilla node with microscopic cancel signs! So onwards and upwards!
Big hugs to everyone, Anna xxx

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Also sorry i havent been on here sooner to wish everyone well this week. I had a dental infection from a fractured tooth and yesterday morning after an exploratory to see if root canal was feasible, i had the tooth extracted (the kids now call me gappy!). Its been a long week but it ended on a high! Xx Anna

@anna_x51 you are not a rare bird after all :raised_hands: which is excellent. So pleased you had a positive outcome from your histology, now onwards abd upwards. So all 3 of us will be starting EC at the same time so we can compare.
I also had to visit the dentist as part of my tooth broke off. I also had a uti at the same time so eventually antibiotics were given which sorted it. :crossed_fingers:it doesnt come back as I am susceptible to them.
@bettysmum how are you doing?
Hope everyone is having a restful weekend and being kind to themselves x

Hi All
@diamonddapple great to hear that you have finished your 12 weekly Paclitaxal, it’s a good milestone to have achieved. I hope all goes well with your bloods and you start EC on schedule. Moving from one chemo to another is always an anxious time but I must say I felt the fact that it was three weekly gave me time to feel ‘normal’ during the cycles. I was worried to begin with that the weekly ones felt they had flown by because they were weekly but the three weeks comes around so fast in a good way also :smiling_face:.
@anna_x51 (gappy :joy:) such good news to hear that you are not such a rare bird after all! Delighted that you are now back on a plan and that you are able to have a well deserved new lease of positivity. Best of luck starting your EC next week, looks like there are a few of you ladies starting at the same time ps loved the image of you using your socks as a boob……in a million years would we ever have thought we’d be doing such things :rofl:
Welcome @sharon-brin, I also had more that one tumour (1 x 4.7cms and 4 more ‘emerging’ ones) This is what has necessitated me having a mastectomy as opposed to a lumpectomy. I wish you well with your treatment and I’m glad you found this group.
I had my mastectomy Thursday evening with 4 sentinel nodes removed, discharged Friday morning with a drain in place. I must say that there is very little pain, keeping up with painkillers though just in case! I have very good movement and feel very well in myself as Anna says the exercises are a must, I think I find them ok as I didn’t have a full mode removal. Pathology report to follow in a couple of weeks :grimacing::pray: My wound has a dressing covering it but from what I can see it looks neat enough, strange to see a flat space where my 36DD boob used to be but I’m surprisingly relaxed about it :relieved:
All the very best to you all, happy bank holiday xx

So pleased you are making a good recovery after surgery @gerry22 xx

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Hi Ladies
How is everyone :thinking::thinking:
Did you have your EC @anna_x51 and @lillytiger .
My bloods played ball so I was able to have mine and it wasnt delayed. I haven’t felt too bad today but my Oncologist did say there tends to be more nausea with EC and I have stronger anti sickness tablets and also steroids have been increased so keeping everything crossed but it was day 4/5 the washed out, tiredness and low mood kicked in.
Hoping your recovery is still going well @gerry22 and glad you are relaxed about losing your boob although I won’t look much different after my mastectomy as I’m only a 32B :roll_eyes::roll_eyes:

Hi all
I hope its going well for you all.

i had EC on friday and whilst the treatment went well, i was vomiting all of friday night. Its just nausea now, but as i didnt suffer much nausea at all through p c & p, it took me by surprise. The dexamethasone have helped on day 2 and now day 3.

@diamonddapple i am glad to hear that you are doing well on EC and not suffering.
I am on cyclizine and i have metacopromide but neither offered much relief on friday. Do you mind me asking what stronger anti sickness meds are you on?

@lillytiger i hope your journey is going ok and if you have started EC that you are also not suffering.

@gerry22 i hope you are well on the way to mexican waving with your family! I am 5 weeks post surgery and can now stretch my left hand up the same height as the right. Something that i felt would be impossible at the start. I like your feedback on your new look “surprisingly relaxed about it” as that captures exactly how i felt.

@bettysmum @sharon-brin i hope your treatments are going ok.

Take care and have a good week. Big hugs. Anna xx

@anna_x51 Sorry to hear of your reaction to EC.
I am on Aprepitant for anti sicknesses. Its a 3 day pack I have the big dose tablet one hour before chemo and then 2 slightly smaller does on day 2 and 3. I had these on the first 4 cycles of Pembro/Taxol and Carbo but at a lower dose.
I also have Ondansatron pre chemo and then have one to take 12 hours post chemo.
If needed for nausea after that I have Domperidone and if still suffering Prochlorperazine which dissolves between your upper lip and tongue.
I hope this helps xx

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Good morning ladies. I started reading these post’s last night and just caught up this morning. Wow the support you show each other is amazing :clap: youve helped me by seeing the strength you have. I found a lump early March was told its was cancer but small, treatable and curable. Early May had lumpectomy and centile node biopsy. The result came in 16th May. Told cancer out, margins clear and hasn’t spread to lymph nodes. Then felt like a slap in the face when they said triple negative cancer. I haven’t heard anything from the oncologists yet hopefully soon though. Just reading your post are helpful so thanks for that. I admit i googled which boy i wish i hadn’t. There is hope out there. Yes it scary but with your help ladies i am trying to be more positive. If it wasn’t for watching emmerdale and the story line about tnbc it could be a lot worse. I only checked my breast after watching. I am worrying there may be problems starting chemo as i have rhumatiod arthritis and constantly have low white blood and neutrophils. But we will see. Thankyou ladies soooo sorry if ive waffled on a bit. Thinking of you all. Xxxx

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Hi everyone :hugs:
Yes I started EC last Friday too :clap: Had the strong antisickness like you @diamonddapple and was good enough until Sunday evening then just felt super wiped out and nauseous. Sofa day today. Sorry to hear @anna_x51 that you were unwell. I hope the nausea is easing. Brill to hear they have a new plan for you :crossed_fingers:
Good to hear you’re doing well too @gerry22 :smiling_face_with_three_hearts: Another part of this journey done.
Welcome @debi1 :+1: glad our thread has been supportive already. Did they say you had a different type of breast cancer before your lumpectomy?
I haven’t watched Emmerdale but according to the TNBC Facebook group, the treatment and journey in the story is very different to real life and they’ve not been happy. Good it meant you found your lump sooner though.
Keep going everyone :muscle: xxx

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No love i wasn’t told it was TN until the results after my op. I did wonder why as l did have a biopsy a few weeks before.:woman_shrugging:t3: but nothing said​:woman_shrugging:t3:. Thankyou for replying. Means a lot. Take care everyone :heart:

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Welcome @debi1 .
How has everyone been this last week.
I dipped on Day 5 after EC. No energy and bouts of nausea for 4 days. My poor husband I kept sending him out for things I fancied eating and then the sight of it made me feel nauseous.
The lack of energy went on for longer but back on track now :crossed_fingers::crossed_fingers:.
How have you been after EC @lillytiger and @anna_x51 .
When is it you get your histology results @gerry22 .
I hope everyone else is doing ok and wish the bloody weather would warm up :tired_face: xx

Hi diamonddapple. Sorry to hear its not been great for you. Ill be honest i had to look up EC before i replied. Sorry :two_hearts: i haven’t started any chemo yet. Still waiting for appointment with oncologists. Hopefully next week finger’s crossed. Ill probably be wanting loads of advice when i start treatment. I do like reading things on here. Everyone is so supportive and it helps knowing you’re not alone. Take care xxxxx

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Yay. Got my appointment through for oncologists for this Saturday. Its not that im looking forward to it but you’ll all know what the waiting is like. Just want things to start moving. They have started seeing people on Saturdays because they are so busy. Take care xxxxx

Welcome debi1 good to hear you’ve got your Onc appointment on Saturday. It will feel so much better when you’ve got a plan, try not to feel too daunted whatever it is as we are all in the same boat (just different stages) and can attest to it being achievable! Sorry to hear Anna, diamond and Lilly that you are all suffering with sickness and nausea on EC. When I had mine I was given a tablet called Akynzeo, this worked a treat for me. My chemo nurse described it as the ‘golden bullet’ to prevent sickness. I believe it is quite expensive but really worked for me. Thank you for asking about my histology results following surgery diamond, I am delighted to say that I have achieved pCR (Pathogenic complete response to chemo) and no spread to sentinel lymph nodes. There IS light at the end of the tunnel for us :smiling_face:. Radiotherapy next followed by stand alone immunotherapy, at least I think that’s the plan as my Onc appointment isn’t until the 26th :thinking: Virtual hugs and best wishes to all :hugs:

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That is excellent @debi1 . As you know the waiting for treatment to start is the worst part. Hopefully all you questions will be answered on Saturday :crossed_fingers: xx

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Well thats my appointment with oncologists cancelled. I suppose it can’t be helped :unamused: its due to illness. Rearranged for next Saturday. It seems to be a pattern with me when i was booked in for my lumpectomy l got all the way to theatre only to be cancelled and sent home. I was the last one of the the day and operations before me took longer than expected. I know these things happen but it all got a bit much for me today so needed a moan. Sorry :two_hearts: :disappointed:

Oh no @debi1 how disappointing.
This happened to me, I had a phone call on the morning of my initial appointment with my Oncologist. I ended up going private and seeing her colleague as I was so stressed with the waiting .
Brilliant @gerry22 that you are Pcr.
Wishing everyone a positive