Hi Niki
Just wanted to say good luck for your op xx
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Hawktower 
can you ring the number on here and speak to a nurse, theyāll be able to discuss with you further. There have been others over the years on the forum had more chemo after think it was their treatment plan and treatment plans can change throughout as your team tailor your treatment to you specifically 
Shi xx
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Hi Shi
I spoke to one of the nurses on here, after Iād posted above. She put my mind at ease somewhat, about it being part of my treatment plan rather than bad news necessarily cancer wise. Iāve a face to face oncology appointment next Tuesday so illl be making out a list of questions, options etc. I just hate the thought of chemo till October, I thought Iād be āringing the bellā in a month or so 
Ah well, fingers crossed for Tuesday that I get all the answers I need.
Xx
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Hawketower remember to have treats still and then plan a cruise or holiday youāve always fancied doing for when your finished in October 
keep looking forward you got this Shi xx
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Hi All, I have not been on here for a while, the neuropathy in my fingers is making them feel like they are frozen and this makes my phone feel like an ice block so Iāve not really been using it.
@Hawketower, thank you x And so sorry to hear you are not having a good time, it sounds like you are dealing with a lot at the moment. I had surgery before my chemo and due to having a gene, I am now having more surgery but no other treatment planned so can offer any input, I also havenāt found anything that really helps the neuropathy, Iām now on morphine and gabapentin but they only take the edge off. I did find that I was still losing hair for a good 6 weeks or so after my last chemo, it seems to have stopped now, itās going back well but my head is really itching.
I hope everyone else is doing well.
Take care x
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Sorry to hear about your hands NikiR, that must be incredibly frustrating. Is that what theyāre giving you the morphine and gabapentin for?
I swear weāre all going to be medical drug name experts by the end of this!
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Yes, Morphine and Gabapentin for the neuropathy pain, Iām on something else for my hot sweats, I now have tablet boxes because I keep forgetting what Iāve taken! 
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Hi @Hawketower , so sorry that you have to have more chemo.
This drug is the one known as Kadcyla right?? There is some good info on YouTube from Liz ORiordan about the HER2 drugs, and also there is a very active fb group for triple+. (Triple positive HER2 PR+ ER+), from what Iāve read this now seems to be becoming standard if you still have residual after neoadjuvant. Most of the people are from the US, some from UK. Kadcyla is very effective from what I understand. Iām not sure how interested you are in reading about the therapies, if you are if you scroll down this link it explains how Kadcyla works and why itās so effective.
Personally, I had surgery first as it was believed to be DCIS. Even if they had known I would probably have had surgery first as the area was small. So there is nothing to check if the chemo worked 
. I find it all very confusing.
Sending you a hug
X
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Thanks @emsj Really interesting article, thank goodness for scientists and their perseverance!!
Sorry, got a phone call while I was responding and posted before I was finished. Thanks for finding all of that for me, I follow Liz on Instagram, Iāll have a look for the YouTube video now 
Iāll keep researching and adding to my list of questions for Tuesday, but at the moment I am swaying towards saying yes to the Kadcyla, even though I donāt want more chemo. Theyāve booked in a PICC line appointment for Wednesday morning, and chemo is Thursday, so Iāve certainly not got a lot of time to dither. Thanks again, hope youāre well xx
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Latest - oncology arenāt happy with small ulcers on mastectomy and belly wounds so Iām on two weeks of antibiotics before they will start Kadcyla. Appointment with radiographer next week, hopefully wounds are healing before they start that. Also now on anti virals for Covid. Iām not feeling the love from January 
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Hawketower sending the magic carpets being blown about with the January storms, jump off onto the cruise for Feb and smoother sailing going forward 
your doing amazing and weāve got hold of you 
Shi xx
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Thanks Shi Hopefully February will be an easier ride for all of us xx
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Sorry to hear January has been a crappy month @Hawketower , hopefully the meds will kick in and things will pick up quickly. You definitely want to be healing well before rads, I thought I had done fine and was out of the woods for problems then this last week, 4 weeks after rads, my skin has gone really sore, not sure why.
For my phesgo injections Iām supposed to be moving to home care rather than going in to the hospital, so far that hasnāt happened, waiting for them to call, both for the last phesgo and the next upcoming one and I havenāt heard a dicky bird. It all seems very unorganised. Is anyone else getting phesgo at home?
Hope everyone is doing ok
X
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@emsj I didnāt know Phesgo at home was possible. I would have preferred that. I know Herceptin can be given through homecare. Do let me know if and when you get started on hācare. Iām set for every 3 weeks at the hospital til Sept, but not complaining, I feel we should count ourselves fortunate to be in this age where itās available and makes such a difference to our prognosis. X
Hi @suedot. Iām in Wales, I donāt know if that makes a difference, but yes, the phesgo is supposed to move to home care. Apparently they are supposed to call me the day before treatment, which seems a bit last minute, and they didnāt do the first time I was supposed to have home care so it got a bit messed up. I agree the progress with treatments, especially HER2+ are amazing.
So, my radiotherapy was 19th-23rd of December. Thought I was doing ok with no big reactions, last Monday, I started having skin changes which have gotten progressively worse. Called the radiotherapy dept today, the nurse has said the skin reactions are what would be expected, but it is a delayed reaction. Donāt want to worry anyone as this doesnāt happen to everyone on phesgo, but it can be the phesgo that causes this. So itās possible my skin could get worse after the next phesgo treatment too. She is sending me some specific dressings in the post as the hospital is a bit of a drive. And Iām currently wishing my boobs were smaller and not giving in to gravity as all the sore area is in the skin fold and on my ribs more than my boobā¦.
Iām sorry to hear that @emsj , I hope you see an improvement soon. Have they recommended any creams for it?
Not cream, they have given me Mepilex transfer dressings, it sticks gently to the skin and is a bit spongy. The skin is now coming off so dressing is needed nowš. I need to keep moisturising whatever isnāt covered by the dressing. Nurse said just to carry on with what Iāve been using, Iāve been using moo goo which seemed ok.
I got a text from the company that does the phesgo shots today so that seems to be sorted out now, the company is called Sciensus.
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Hi all,
It really seems that January has been a challenge for everyone, I hope February has got off to better start.
I had my double mastectomy and implant reconstruction on 18th January, on the whole recovery is going well, had to have fluid drained yesterday which has added to the discomfort but manageable and I can now sleep better.
Still struggling with the neuropathy, that has caused me more issues than the mastectomy. No sign of the neurology appointment, my GP has warned me that there may be quite a wait.
Best wishes all xx
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Hi @NikiR , so glad you are doing well, thatās a big surgery to get through. I hope you are getting plenty of help while you are recovering.
I havenāt gone back through the posts so I donāt know if anyone has already mentioned acupuncture for neuropathy?? Iāve read about it in a few threads, some people seem to find it very helpful.
X
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Hi @emsj Iāve heard that about acupuncture too, so Iāve got an appointment this evening. Got to be worth a try. How are you getting on? Is the Mepilex helping? And has your home Phesgo been sorted out yet?
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