I’m on Phesgo, Exemestane and blood thinners and have itchy arms. I’ve tried lots of things and nothing works. Has anyone else had this as its driving me mad now after a month like this?
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@arty1 I wasn’t told much of anything about Kadcyla if I remember correctly. I got the news as a surprise during my pathology follow up appointment but that was from the surgeon so she said my oncologist would tell me more about it as I was seeing him a few days after. I looked a lot at the information available from the various studies/personal experience from the FB group and decided I was going to take it before I even met with my oncologist. He just confirmed that while it was my decision, he would highly recommend Kadcyla in my case to reduce the risk of recurrence (RCB-II, so not the worst but not the best residual cancer burden score). He said since I had tolerated EC-T fairly well, I would probably handle Kadcyla fine as well. It made my decision pretty easy and I trust the guidance of my oncologist.
@marionse25 I wonder if your oncologist is the one mine would refer me to if I had wanted to try Neratinib. It doesn’t seem very popular in the UK at all, but there’s a lot of people still being prescribed it in the US. My oncologist kinda laughed when I asked about the difference in prescription rates and was like… well, you know the medical system in the US. I don’t blame you for not wanting to take it given your past experience with Kadcyla. At least you can be fairly confident that there seems to be very little benefit for what seems like some pretty shitty (pun intended) side effects.
@mrsjelly I swear by locobase repair cream for everything dry/red/blotchy/irritated skin related. It’s hard to come by in the UK, but you can buy it online in a few places: Locobase Repair We always import at least a few tubes when we come back from Denmark. My husband has had severely dry skin on his hands for years and it’s the only thing that works when he has a flare up. It was lovely for soothing the cracked lips/nose/etc that I had during chemo. There’s no scent, so you don’t feel like you’re eating perfume.
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Hello all, I wanted to quickly check with you all and seek your advice. So my partner had met with the oncologist last week after her lumpectomy and she was told that now she will receive radiotherapy for two weeks. After which they would start Kladcyla every 21 days. Today we received a call from the chemo unit saying that her Kladcyla will be given tomorrow , with no mention of radiotherapy. Her blood works have also not been done as they used to do before the EC and taxol chemo infusions. We are so confused as to what we should do? Could someone please guide on this.
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I would query with the chemo unit/onc/BCN (who ever you can get hold of)!
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We are constantly calling the chemo unit since the last 2-3 hours but nobody is picking up. Keeping our fingers crossed 
Have written to the BC nurse as well. Feeling so frustrated 
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Hi, I would continue to push this as you are, Her bloods need to be taken before every Kadcyla infusion just like with previous chemo. It sounds a bit odd that they’re suddenly are saying it’s tomorrow. I know that in my case, it was radiotherapy first then a 2 week break before starting Kadcyla, as there is a risk to lungs from both so to reduce that risk some places prefer to minimise this by not overlapping them. Not everywhere is the same, but it’s worth double checking. I continued to get my phesgo injections till I switched to Kadcyla.
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Thank you for this! We aren’t going to give in and let them give the infusion unless we see the oncologist and get out bloodworks done. It’s such a disaster, the least they can do is talk amongst themselves and treat us like actual human beings!
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Hello everyone
Wow! It’s been busy on here. I’ve been whacking myself out as usual with work, teaching and socialising and choosing to ignore the fact that I’ve just had 15 months of cancer treatment until I’m so knackered that I’m good for nothing but the sofa, a rhubarb gin and a bag of Percy Pigs. (Actually, it’s the cheapo LIDL version which I think are called Henry Hippos but perfectly palatable…I thought you’d approve @mrsjelly!) Sorry to hear about your taste buds, by the way. That was by far the worst side effect for me. Breast cancer treatment takes away so bloody much that when it also removes the pleasure of potato products, then that’s the final kick in the teeth. Fortunately I could still taste sweet so I pretty much took up residence in Coughlans bakery. Can you taste cake? I do hope so. Well done to your husband on purchasing you the luxury bum cream. He gets top marks despite the cost. If you can’t treat your bum when you’re going through this, then I don’t know when you can. I have also just invested in some Germoloids cream which was a whole £6.99 so I’m looking forward greatly to treating my bottom like Royalty. I probably should take your advice and see what it can do for my face. I’ll let you know! I’m so sorry you didn’t make it to your daughter’s graduation and thank goodness for livestreaming. It’s not the same but at least you were there and saw her blow you a kiss. That’s made me feel quite emotional. You are going to come out the other side of this and get to go to all her other milestones for years to come.
@arty1 You look amazing! You don’t need a wig. So happy to hear you SLAPPED THAT BENCH, GIRLFRIEND! 
You’ve done very well. On with the next stage now.
@sooz1 - We all have massive respect for you going through this with such a little one. Also, the loss of hair and nausea is highly unpleasant. You shouldn’t have to go through this when you’re so young. You make sure you kick its arse into touch, like it deserves. I got a slight bit of tingling in my hands and feet towards the end of Paclitaxel but was told that it was so late on that it was nothing to worry about. It went away very soon after I finished. Here’s hoping you don’t get any at all.
Well done @shannon27 - Keep on powering through. You’re getting there.
@kartoffel I also like to hear benches are being slapped. It feels good to do it and even better to hear it. Good advice about Nerlynx/Neratinib.
@frame That’s as much introduction as we need so hello to you and Angela and welcome. I’m useless with tech and I work for an IT company in sales. 
Also welcome to @sms. Please extend our welcome to your partner too. There’s loads of us here so there’s always someone to help and support you, even if you just want to come on for a good whinge/moan or to share that you’ve purchased a new leopardskin bra and matching big pants set! 
@marionse25 It’s good to hear from you but I do wish something would turn around for you. Your whole journey has been awful and with some lasting damage to contend with. I have had a drop in my ejection fraction due to the Phesgo so am on heart medication which has sorted it out. I hope you can do something similar. My Sutton Marsden experience has been so positive that it’s sad to hear that your Chelsea Marsden experience has been the polar opposite. I really hope that the right job comes up for you because something needs to go right for you soon. I’m going to ask the Universe to find you a job where you can work from home as much as you want to. 
@naughty_boob Bet you’re glad you don’t support Wales! Poor Wales.
@pennyp - Dare I say it, but I think my IBS is settling down. My poor backside positively needs a holiday, it’s been so overworked over the past year.
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@Linda_Corinne That’s a strange side effect. What do your team say about it? I haven’t had that myself. I wonder if anyone else has this going on?
@sms That sounds concerning. Have you had any luck getting through? Have you tried calling the Breast Cancer Now nurses on here to see what they say? @belle1 is right, they must do bloods before Kadcyla.
I was very organised today and bought all the birthday cards and Valentines cards etc that I will need for the whole of February then promptly put them in a wet carrier bag. All the envelopes have disintegrated and the cards gone wiggly. They are currently drying out on top of the radiator and I’m thinking if I put them all in the post then I can blame Royal Mail and the British weather. As for my husband’s Valentine’s card, I think I will say I wept tears of joy at our lasting union which warped the card and made the ink run. Sorted!
Salbert
xx
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@salbert you said it yourself … you’ve had 15 months of cancer treatment so please remember to rest !
One of my friends said I looked like an artsy , art gallery critic with my bald head …
There’s a lot to catch up . I’m feeling dreadful after cycle 4 … day five and those side effects are literally smashing me in the face . There’s a lot to catch up on …
@sms Are you in the uk ? She should not be having kadcyla without bloods first .
@kartoffel We have to just trust our healthcare providers at the end if the day … if they recommend something but still be informed and do our own research. This latest drug mentioned sounds worryingly scary . I wouldn’t be touching it with a barge pole
@pennyp my guts are ruined since I started chemo and herceptin 
I think it must be the destruction of the good bacteria in the bowel
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I was prescribed steroids cream from oncologist for my blothy face. Told to use for 10 days and its worked a treat also antihistamines . Gp gave me
Neomycin 0.5% / Chlorhexidine hydrochloride 0.1% nasal cream
Apply To Nostrils Four Times A Day For 10 Days
15 gram
For nasel issue x
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Well done for completing your chemo! I bet you feel such a relief! I feel fine thank you… my cording as gone 
im always picking my girl up though amongst other things like cleaning etc so i have no swelling and moving around normally now. Just reading and having a catch up, my girl turned 3 yesterday and we had a whole weekend of celebrations 
feeling truly blessed and fortunate to be able to see many more of her birthdays.
@sooz1 yes they are similar, hope you are getting all the support you need. I know its so hard with having a little one.x
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I also start my radiotherapy on Wednesday 
got myself some E45 cream to slap on afterwards.
Also ordered some exercise stuff off amazon as i am starting fitness again… i do have a treadmill too… just need to get all clothes and whatever else is on it 
hope everyone as had a decent weekend 
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Had my lumpectomy today it was a complete surgeon was very pleased he said it was a complete response just need to wait on pathology results x
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Thank you @salbert for such a lovely welcome 
Me and my partner feel good being part of this community 
@arty1 Yes dear, we are in the UK based in North London. That is what I am worried about , about the sudden haphazardness of it all. So far the chemo etc was done in a slightly more organized manner with all the protocols being followed. We also feel that the system is more organized until the person is receiving active treatment and thereafter for "maintainance chemo/ injections " they just leave you out in the wild to fend for yourself. Nonetheless we are grateful for the NHS and the treatment they provide.
@caz591 Well done getting on here the very day that you have your lumpectomy! It’s all sounding very positive. Rest now and let us know the results.
@arty1 - Your friend is right, you do actually look like an art critic. But then you are ‘arty1’!! Take it easy. At least you know this is the last dose of chemo side effects. Hang in there.
@hlc Good advice. Always good to share remedies and glad they’re working so well for you.
@jeml I’m so happy to hear that you had a lovely weekend of 3rd birthday celebrations and I BET you appreciated them in a whole new way. You’re right that the year you’ve just been through means you get to celebrate many, many more with your precious little girl. Good luck with the radiotherapy and brilliant news you are getting back to fitness. It feels such a milestone to reach that point.
@sms Let us know what happens with this Kadcyla/bloods/radiotherapy issue. It’s concerning.
I have Parents Evening after work today. Wish me luck! 
Salbert
xx
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Bless good luck.
Glad im over that one. Although hes 16 and in college and still aa daft as a brush
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Hello everyone, hope you’re doing ok!
Going in for my SMX/node clearance on Thursday morning eek! For some reason I’m more scared of this than I ever was chemo.
Hoping this is going to be easier than TCHP
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