I had my left mastectomy on 11th July, I have mixed ductal +lobular ER positive HER2 low and 4 nodes taken with 2/4 nodes showing invasion. I had my first appt with an oncologist Registrar on 2/9, who other than tell me I needed chemo, a node clearance and then radiotherapy and Tamoxifen or Letrozole for however long … I didn’t learn too much.
She dismissed the cold cap because I’m on EC + Docetaxel as a waste of time but, having heard positive stories on here, I’m going to request it anyway and I’ve had my hair short.
She gave me the impression that at 65, I wouldn’t care about losing my hair. She gave me very little information on anything and I only found out what chemo I was on because she handed me a cancer drug paper on it as I left. I was told I’d start chemo within 2-3 weeks.
This is why I find this site invaluable both for its information and support from you guys. This is the first time I’ve posted but thank you all so much for contributing, coming here and making me feel as if I’m not alone in this, we have each other’s backs.
I’ve asked for a PICC line, as I read about that on here too. Had I not requested, it wouldn’t have been offered.
So thank you all very much from the bottom of my heart for being here.
Wow. Def try the coldcap. I had Fec-T and I didn’t brush it twice a day so it matted I think but it depends on your hair condition too. It grew back fast too.
I don’t get why you wouldn’t be offered a PICC.
Happy to help with any other questions. X
Hi. Your oncologist experience sounds a little like mine. I’m on the same chemo regime & found them v dismissive about the cold cap (which makes me want to do it all the more). I’ve since found the chemo nurses to be much nicer about it all. I’m not sure if there is an element of consideration that they only have a certain number of cold cap units (or they do at my hospital) so I wonder if they try to deter ppl wherever possible. I’ve found this out when speaking to the scheduling people where I assumed that my weekly chemo would take place on the same day and time each week.
Aw @janie3 that is such a shame! My oncologist & unit were super encouraging about the cold cap and I’m on an EC and paclitaxel regime, which I know is meant to be really harsh on hair. I think we should all be given the option to try it if that is what we wish! Stick to your guns
Do agree with @sunshineandunicorns about limited units though - our clinic only has two so that may be a factor?
I had to wash my hair today, sooner than I wanted, but I’m trying wigs tomorrow and the lady wanted me to wash my hair, which is perfectly understandable.
Anyway, I was so shocked by the condition of my hair! I didn’t have any shedding (only started treatment last Thursday so too early maybe??) but oh my days my hair is like straw. I am prone to dry hair to start with which probably isn’t helping, but I was so shocked to see such a change so quickly. It’s got me leaning to go for a pixie cut already to be honest, I just think what is the point in trying to save such dead hair??? I’m not going to do anything rash and will have another treatment before I make a decision, but I was slightly aghast today
Sorry to hear about issues with your hair. I discovered a really good site today that may give you a few pointers. It really made me change my mind about a lot of things when I watched their video on hair care with the cold cap. Particularly regarding brushing the hair regularly (at least twice a day) and washing and conditioning it more regularly than I thought.
Brushing hair is important as it gets rid of all the hair that has fallen out that if left, will lead to having matted hair.
Interesting as I wondered how often and how to wash it. It says2/3 times a week in warm water in the shower is fine. I’ve not washed mine since Friday so will definitely wash it tomorrow now.
I am having mine at home from week 5 and so from what I’ve been told they will know my cap size already when it’s delivered as if it was being delivered to the hospital. The hospital didn’t know I was using a coldcap and I checked they knew with my onc at another hospital.
My next dilemma is will the blood test get from my house to the hospital the same day via the company that are taking it to my onc.
That nail varnish was no good as it was for nail art. I’m just using what I had before I think now but there are afew online that are waterbased. Did you get some?
I got some but it’s not very good, it just peels off straight away! I’m just going to use normal stuff too I think. Ive got cuticle stuff and strengthener so I think that’ll do!
Ahh sorry to hear this (I also consider this a warning for myself so thanks for the heads up - I thought losing it was my only fear!). Did you or the nurses put anything on your hair before putting the cold cap on? I’m planning to go with wet hair & comb conditioning product thro it before they put the cap on (me talking like I know what I’m talking about when I really don’t ). Also got a Pantyliner packed ready for my forehead after seeing recommendations about this a few places - my husbands face when he sees this will be priceless! Saw the GP on Saturday & my infection has gone so I’m cleared to start chemo in the morning…I have a lingering tickly cough which isn’t going to be great for anyone around me (I’m assured no one can catch anything from me but it doesn’t sound great & it would make me anxious if I was having chemo next to someone who was coughing!).
Aw I’m glad you can get your treatment started! Well, not glad you’re having to have it but you know what I mean
I washed my hair the morning of chemo, went into the unit with it wet. Then when it was time to cap the nurse drenched my roots and applied conditioner. I think my pointy head just repels the cap though!
I didn’t bother with a liner for my forehead as they gave me a headband, but the lady I saw on my education appointment was using one - she swore by it! I think how much protection you need depends on how the cap fits, the peak didn’t really come down far on my forehead so I was ok.
Best of luck for tomorrow - it really isn’t as bad as what you expect. Will let you know how wigging goes xx
Well, an update from me to all you lovely ladies. I started my treatment this morning with a 1 x week delay from getting ill - did all my pre treatments & cold cap etc, they put the paclitaxel in & not long after I had an extreme allergic reaction. Vision went funny, felt severe sickness & the weirdest most awful indescribable sensations (felt like there was a giant air bubble in my head). Husband says I went deep burgundy colour too. Nurse pressed the alarm & next thing I remember I’m surrounded by doctors & nurses with the curtains drawn. It was all very scary & they stopped the treatment & sent me home (eventually after obs). Now it’s just a wait to see what my oncologist wants to do with me altho it sounds like they will try again next week with more pre-drugs and do the infusion over a longer duration. I am absolutely filled with dread over the idea of this as I cannot even imagine having to go thro that feeling again
Oh my goodness how awful for you! Do you feel ok now? What a horrible experience to go through and what a run of grotty luck you’ve had. Hope you are resting up now! Xx
I think so! I am due on my period so since I got home I started to feel rotten because of that (I think, I mean who knows what is what now!). I only tolerated 17ml of the bloody chemo stuff so they’ve said they think I should be okay now (altho I have a grotty metallic taste in my mouth, but I think they put something in me to make me go right again as when they did it felt like I’d wet myself ). I’m feeling super anxious now over what is to come. I knew from reading the forums there’s an alternative to paclitaxel for ppl that have a reaction but doesn’t sound from the nurses like I will get that anytime soon (there’s a massive cost difference which I’m sure plays a big part!!)
Crikey, that’s not great. I knew there was a risk of reaction to paclitaxel as I remember the oncologist telling me about it but I thought it was one of those things they tell us about but hardly ever happens. You poor thing. I hope they get a plan sorted for you!
Sorry to hear that. I asked my onc re that and he said there are other options they can switch you to. Did they try to get hold of your onc? You will probably get swiched to something with less s/e’s. When will you find out what the plan is?
My blood test is between 9.41 and 11.41 tomorrow. I just hope it gets back to the lab via a courier and to the hospital via the onc tomorrow.
I have heard from my onc & she is going to put me on Abraxane. Which will mean Filgastrim injections. Is anyone taking these with any regime already? - I knew I’d have to have them on EC, just wasn’t ready for them yet. Argh!
(me talking like I know what I’m talking about when I really don’t 
). Also got a Pantyliner packed ready for my forehead after seeing recommendations about this a few places - my husbands face when he sees this will be priceless! Saw the GP on Saturday & my infection has gone so I’m cleared to start chemo in the morning…I have a lingering tickly cough which isn’t going to be great for anyone around me (I’m assured no one can catch anything from me but it doesn’t sound great & it would make me anxious if I was having chemo next to someone who was coughing!). 
