HER2 +DCIS + Invasive 80mm tumour

Hi,
First post so a bit about my diagnosis. I’m 45 and found a strange area, not quite a lump end of November 2024. After all the tests I was diagnosed with a 20mm invasive HER2 positive tumour 5 days before christmas. The ultrasound showed another area of concern and a week before treatment started my mri also showed the DCis in the same breast. I’ve just finished 3 cycles of ec. Not great but not horrendous. Tomorrow Istart Docetaxal and phesgo. I’m worried about the Phesgo. I have pain processing issues and Raynauds. I fainted at the vacuum biopsy. My breast care nurse warned that phesgo can be painful when it first goes in and im really worried about an over reactive response. I always hate the day before chemo. Week 3 i feel relatively human ahain and it feels pants knowing I’ll be feeling rubbish again next week. On a positive note I’ll be halfway through my pre surgery chemo so the end is on sight. To cheer myself (and others ) up I wear a special outfit on chemo day! Meet Chemo Cow - i have a different one for tomorrow

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Hello,

Sorry you find yourself here! Firstly, LOVE the cow outfit!!

I’m also HER2+ and I’ve got cycle 7/8 of my pre surgery chemo tomorrow. Keep going you’ll get there!!

In terms of the docetaxel/phesgo - my brother works in oncology and his consultant recommended Suzzipad cold therapy gloves and socks with ice packs which you wear during the docetaxel treatment, it’s meant to help prevent nerve damage so might help but depends how well you can tolerate cold if you already have Raynauds? Also the phesgo I find quite stingy when it first starts going in, but I’ve been putting an ice pack on the area for the infusion, pain gate theory distracting your pain sensors and I definitely find it helps!!

Also, there’s a group on here for HER2+ full of fabulous people, lots of kindness and positivity and a place to vent!! I’ll try copying the link to the thread…

Hope tomorrow goes well!!

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Thank you so much for replying. Unfortunately I cannot use the ice packs/gloves as I take medication (Viagra 3 x a day causes a few laughs :rofl:).
I will try and follow the link.
I just find tonight rough but wearing the silly outfit distracts me and I know I’ll get through it. Sometimes just writing or saying my fears gets them all out of my head and i can re focus x

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OMG. I’ve just realised that i put good morning and its night. I had to edit that post twice to take out all the auto correct mistakes as well! The Chemo Brain is strong in me today💪

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Haha oh that chemo brain!! I’m in the wired to the steroid moon phase tonight.
Sorry you can’t try the ice packs. I’m not sure what else would be suitable, your chemo nurse may have some experience of other ways to help the phesgo sting it’s worth asking!
Good luck tomorrow!!

Its a Full steroid moon tonight. My eyes and body are tired but my brain is having a :partying_face:
Good luck with yours tomorrow too - neraly over pre surgery treatment

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Morning. Just a tip for the Phesgo if it stings ask the nurse to slow down. I found the slower the administration the less the stinging.
I was like you around 20mm invasive and a large area of DCIS. I had a PCR to chemo, (I was on Docetaxal and Carboplatin aka TC Phesgo) so although the regime is tough, keep going as the treatment for our type of cancer has good outcomes :muscle:

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Phesgo tip. Put emla cream on the unjection site (thigh) before you leave the house & cover. This will take most of the pain away. It can still sting a bit when the liquid is going in but if you ask them to slow it down it helps.
You can ask your gp to get emla on prescription or you can buy it from boots. Good luck

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Hi Vikki,
I am Sara with the similar subtype yours and had gone through all the treatments like yours before and after my Mastectomy and Lymph node clearance. I was 56 when diagnosed my Her2+++ and Harmone negative .
I had Phesgo injections for 1 year after my surgery and trust me its just a tiny pinch as it is given on the upper thigh. Its not that bad at all! .
Phesgo can do miracles like in my case all the cancer disappeared with no traces ( I got complete pathalogical response) and still clear after 5 years! Wishing you all the best!
Hugs
Sara

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My nurse was amazing. She knew i was anxious and just took her time and talked rubbish to me. I did not feel the Phesgo going in at all. Just a very slight bee sting when she took the needle out and another when she put the plaster on.
Mum was Chemo Cow and I was Mr Feckit Frog to honour St Patricks day


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Thanks for this Sara. Im joping for similar results. My cancer shrunk by 75% after just 2 EC cycles so i am hoping for it all to be gone after the Docetaxel. I am having a masectomy due to footprint size. At the moment im riding a steroid high and feeling pretty buzzed. Yesterday went so much better than i was expecting.

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Love the chemo cow and feckit frog costumes. Do you keep them on through the chemo?
The phesgo injections really aren’t too bad. Sting a tiny bit when they start but they do them really slowly to reduce the stinging. Honestly I can say they are nowhere near as bad as injections at the dentist.
Good luck to you x

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No. The costume is far too hot and chunky for chemo bit it starts it off fun. The phesgo went really well.

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@vikki1 - You go to chemo dressed as a cow? AND a frog! I love you!

You have to join us at HER2+ and need some buddies - #2484 by belle1

It’s non-negotiable!!

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Love the cow suit! I also had HER2, very invasive. Had 1st surgery the day before my BD, and within the next 6 months had 5 more surgeries. Each time the implants caused a horrific infection. I was drained 3 times/week with huge syringe; I would swell up so badly. After the 4th surgery, the surgeon wanted to remove current implants and use a different type/brand.
I couldn’t do it; I told him to take them out and I’d be done. After every surgery I had 2 drains on each side. Every time the drains were removed, I thought my lungs were pulled out. I was able to find a pair of nice prosthetics, after several purchases of ones that didn’t work. I take letrozole daily and the side effects are much like the chemo ones were. After a RX from my dermatologist and the otc topical solution, my hair is coming back, It was down to my waist, but I lost so much daily, I had to cut it. It’s been 4 months and my hair is now growing, not coming out and getting thick, like before. The surgeon who removed my breasts assigned a RN to me for guidance, support, etc. She never called me even once. As if the cancer wasn’t enough, I was surrounded by la-de-da moron PA’s that had no empathy at all.
Now, a year after chemo was done, I’m seeing a psychiatrist. Cancer robbed me, I can’t see me ever being the same as I used to be. I truly hope that you and all the other women had/have better experiences. Be well, stay safe!

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And a duck. I’ll join the group xx

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Wow. That sounds like a rough ride. Do the counselling and whatever it takes to get yourself to a better place. Working in Adult social care i do know that you have to keep fighting to get the support you need with some services. None of us will ever be the same as we were before diagnosis, and im not one for namby pampy " be positive" attitudes but… take the good days and ride out the bad days hoping for a better day tomorrow. I have a dark sense of humour so quote often laugh at mysrlf instead of crying.

I don’t have phesgo but do have goserelin injections and they proper hurt! I now use elma cream, honestly it’s a game changer! It’s a numbing cream. You can buy in chemists. I order mine online, might be worth a look. Make sure you get the packs with the onclusive dressings included. Good luck :four_leaf_clover: