Wishing you all the best with your first chemo tomorrow xx
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@letsdoit so sorry you’re having to go through this, and it must be so hard with so little info out there. Sounds like you’ve had far from sympathetic 'professionals ’ to deal with, but at least despite the nurse thinking you were low priority the timing for getting referred was not much slower than the recommended 2 weeks for priority cancer referrals. And as for that comment, it’s shocking what people who should know better have been heard to say. There’s a whole thread on that somewhere on this forum, sadly.
Wishing you all the very best with your appointment on Monday, and I’m sure you’ve got lots of questions ready to ask. Don’t worry about being pushy, I often find doctors start getting twitchy if you ask more than 3 or 4 questions, but I don’t care, I just keep on going!!! Xx
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Agree re questions. I have a written list of them when I speak to oncologist and I make her wait whilst I capture her answers!
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Thank you. I am having a go at cold capping after I read that Docetaxel can cause longer term hair issues (albeit in rare cases) and have a blanket and headband ready to take with me (they said the cold cap can hurt your forehead where it touches the skin). I have washed clothes and linen like a crazy women this weekend. Not sure how an empty wash basket is helping, but at least the kids will have clean school clothes for one week of the new school term at least 
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Yes I wasn’t going to bother til I heard about the longer term risks, so I’ll be doing it too . Is it the steroids that have turned you into a mad washerwoman, or are you just trying to get ahead of the game? Either way, well done!
Hi. Hope your chemo won’t be bad on you . I’m praying for you !
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Mad wash woman is exactly right. Just trying to get ahead of the chaos really. I get my first steroid dose at the same as my chemo today so imagine how much washing I could get done then….if I had any left . Mind you, give it two days and my kids will have the basket full again.
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@jenhopeful good luck today hope all goes ok x
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Hi My chemo was on a wednesday and I wasn’t fit until the friday but then only to feed, hang nets and light groom. First week, 2nd week i could turn out, but throughout i found mucking out difficult. The first time following chemo the horses were great, they hesitated, becuase of the scent your body gives off, and once i explained to them its the poison in me, they just wanted to nuzzle. they are so loving, and almost understanding that you are under treatment. Fortunately they were still on full turnout until 10th November. but i hope you have friends that can support you. From day 10 - to the next treatment, you almost feel normal, but i’d monitor yourself for a while until you know your norm. It was their food smell that got to me rather than their poo, and leaning forward, sometimes i felt a little light headed. Are you havng cold cap? I also gave myself plenty of Reiki, especially when resting at home. this may be available for you through Macmillans and is worth seeking it out. I managed to get extra on week 3. Keep me posted how you get on, and focus on an important event at the end of the chemo session, this helps pull you through. Love and Light Moonsox xxx
Hi,
Thank you for sharing your experience.
I am on AC -T regimen. Had my 1st AC cycle today, so far so good. Hope it will stay that way. X
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Thank you! Yes I definitely got that impression a bit today with my questions 
also felt like some of them were sort of dismissed or I was just given a stock answer but the truth is we just have to give the chemo a go and hope it works. I have reached out to the Royal Marsden for their opinion on the treatment plan for my cancer as rare (apparently is a mix of ductal, lobular and then this spindle cell metaplastic stuff - what joy!) hopefully that will provide reassurance. In the meantime it’s finally all go here, echo tomorrow, breast mri Wednesday, bloods Friday, pre chemo appt Tuesday and chemo starts next Wednesday 12th 
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Evening. Had my first cycle today of EC. I also did cold capping. I was supposed to do 30mins before and 90mins after. I am glad I tried it, but only managed the 30 mins before and then declined the 90mins. The first 10mins were the hardest and it did get easier. I feel a bit of a wimp not wanting to persevere with it and hope it’s not a decision I regret. But I just didn’t think I would be able to face it for all six cycles. I hope that doesn’t put anyone else of trying it, who was going to, as I am probably being a baby and others may find it less uncomfortable.
The chemo was fine and I’ve just felt groggy (a bit like jet lag) all day, bit of a headache and a bit of nausea. Nothing terrible though. I’d like to sleep, but I think I may struggle because of the steroids x
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Glad you asked lots of questions, and also glad they are getting things started quickly, so it’s going to be a bit of a whirlwind between now and Wednesday 12th!! Sounds like a good idea to get another opinion on things. Is it straightforward getting a second opinion like that? Is there a particular process to follow or did you just contact RM directly?
Glad all went ok on your first chemo, I will be starting next month, no plan as of yet but it’s helpful to listen to others experiences I am also going to give cold capping a go xx
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you are absolutely not bring a baby. It is such an individual experience. I have read on this forum , many times, of people that could not keep the cap on. I am ‘lucky’… not the right word! … in that I am able to keep it on. I take paracetamol half hour before - the first ten mins are hard then I cant feel it. I wonder if it is related to headaches - I dont really get them - but for those that do it is really hard to manage. hope you continue to feel not too groggy after the EC
XX
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You just email their privatepatients email address and they see if one of their consultants will advise. If they do I think one consultation costs about £300-400 which I think in my circumstances is worth it for reassurance and guidance from experts in rare cancer. They will have dealt with a lot more patients with this type of cancer and also know of any ongoing treatment trials etc.
I hope you are all doing okay. 
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Did any of you guys who had axillary node clearance had an advice regarding apprx 30% risk of lymphedema developing ? And what preventative measures do you take? I was advised to wear a compression sleeve 24/7 for prophylaxis, basically post surgery and continue post RT as well, apparently it could potentially develop at any point, months , years, etc. It is progressive and not treatable, basically a compression sleeve for life?
Sorry @natbel I see your question hasn’t been answered here and I don’t know about this. Ask the nurses on BCN or maybe post on one of the surgery threads to get more info. Wishing you all the best xx
Hi @natbel ,
I’ve had a sentinel node removal & have to have further surgery to remove all lymph nodes.
Have you been referred to a physio? I’ve had my second appointment with them today, at my local breast unit. They provided me with the Breast Cancer Now leaflet on reducing the risk of lymphoedema. It’s very informative.
Doing the physio exercises is key & you should inform either your breast care nurse or GP depending on what stage of treatment you’re at if you develop symptoms. You may need to be referred to a lymphoedema specialist.
I haven’t been told to wear a compression sleeve.
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Hi @natbel
I had an axillary clearance after my mastectomy and have been seeing the physio at the hospital for a couple of weeks. I have a small seroma under my arm pit and also cording. The physio has helped my cording and I think the seroma and cording will go in time. They seem to be improving everyday. I was worried about it turning into lymphoedema but the physio was reassuring and told me to keep doing my exercises. She also warned me not to overdo it. The only advice they gave me about wearing the sleeves was if I fly for more than 3 hours I should get one fitted by the nhs. Not sure if that helps much, but hope so x
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