I’m sorry to hear the nurses heart wasn’t in it for your cold cap. I cold capped for 12 weekly Paclitaxel and it isn’t easy but managed to keep most of my hair. It’s is a fine balance as it needs to be done correctly, the nurses were so busy and sometimes I did feel that it was something they could do without and that I was in the chair longer taking up space. When I said that in clinic they reassured me that time was set to allow for the cold cap and I should be supported by all the staff.
My patches were above my ears where I put my glasses under the cap and the nurses didn’t correct me, I found out from www.coldcap.com and www.cancerhaircare.co.uk to wear glasses over the cap in week 4! I have a lot of hair so the shedding all over wasn’t too obvious.
I believe there is research to suggest that hair growth can be quicker if you continue to cold cap with hair loss. I have read many people don’t always continue when they see the loss. If you do continue please ask for a surgical cap to wear to protect your bare scalp from the cold.
Haha loved iron filings, I think that’s why I havent shaved my legs I’m worried about them becoming in growing as they try to fall out. Maybe I should cut them in a 1 cut.
Don’t feel bad my cold cap didn’t work because Tbh just before chemo I spent £2k on a wig/hair replacement and I was starting to panic that was a complete waste of money, so I’m not entirely gutted it hasn’t worked😂
The cold cap did feel a lot worse on Tuesday because of the bald patches I was nearly going to take it off. I don’t think I will do it again. Just be in and out at chemo is a bonus. Think I’m going to embrace the expensive wig I bought which doesn’t come until May. In the meantime I went on an Amazon spree. Yesterday morning I was ordering hair toppers but by the evening I was ordering full wigs as i now look like the guy from the hamlet advert😃 ,not sure what they will be like at £15. But my friend assure me that baseball caps are trending still. Are you having another drug after pacataxel?
You have to do what is right for you. It doesn’t sound like the nurses offered you a surgical cap to protect your bald patches if it was worse than before. That’s not good! It makes me sad that many people are not being supported properly with cold capping. Our hair is a big part of our identity.
Like you I bought a pixie cut wig but I only paid £50 as I had an NHS £100 voucher in Wales. I never wore it so I need to arrange to donate it for someone who can’t afford to pay for one.
I’m still receiving Herceptin until September as well as Letrozole and Zoledronic acid infusions.
I love your humour and attitude. It’s funny how online shopping is a thing with those of us on treatment!
She was fine while my brother was here but then just sat there while I ran around like a loony. Felt a bit aggrieved that she monopolised my one good week and I was then not rested going back to chemo yesterday but hey ho!
My 14 year old has gone to London to see both my brothers and his cousins who are over from Sweden so it’s peaceful with just the girlies at home which is nice! Hubby took them all trampolining last night after my chemo so it’s a nice end to the Easter hols where my kids have been lovely and supportive and such a team so I’m very proud of all of us for how we’re getting by. It is not easy but I firmly believe that cancer is bringing out the best in everyone right now!
I’ve felt very different after EC2. Had a whopping headache straight after the cyclophosphamide which lasted until 11pm and nothing could get rid of. Woke at 6am and took Domperidone and went back to sleep. Delightfully then woke up at 7:30am with NO NAUSEA! Took steroids with toast and then got up, made bed, got dressed. Two friends came to say hi while the girls went riding and it felt very nice and normal. Have hot steroid face today but not badly and needed Omeprazole for acid this time (didn’t last time). Dreading the G-CSF today for tomorrows lava filled bones but at least I’m prepared and I still have a full bottle of OraMorph so am tempted to drug myself through it this time. I really think the key is to take the Domperidone obsessively even when you feel fine and just head it off at the pass.
I described chemo day to my husband as “I feel like I’ve climbed onto a rollercoaster and the bar is down and locked. I know I absolutely hate the rollercoaster and it’s slowly chugging along up the hill ready to plummet down a cliff and there’s sod all I can do about it!”
Are you on 6 or 8 cycles. I mini celebrated being 1/3 of the way through yesterday and then next time I’m past halfway.
I’m also a geek and I know that I have a 20% chance of dying in the next 10 years HOWEVER, I looked it up and, without cancer, I’d have a 10.6% chance of being dead in 10 years. So actually, I only have a 9.4% increased risk of dying in the next 10 years. That sounds soooooo much better!
Morning Sarah, you have such a good way of describing things and love how you work out your percentages to live , I will use that myself, I think like me you are definitely a glass half full which is fabulous
Yesterday went as well as it could, was still very dizzy and it also absolutely wiped me out which it didn’t last time ( not on day 1) still having the nausea but as I’m on the 3 x sickness tablets from the hospital i don’t think I can take the Domperidone on top can I? They didn’t say I could or couldn’t, they’ve also given me a new anti sickness incase the domperidone doesn’t work so I’ve got high hopes but I’m feeling ok this morning , slight headache but not too bad , the doctor did a tell me it’s best not to take anadin extra as they contain aspirin,
How are you feeling on day 3? And how have the last couple of days been? Sending you lots of love
I have Akynzeo an hour before chemo which is a long lasting antiemetic and my nurses say to start the Domperidone either that night (if nauseous) or the next morning 3 x daily but they’re just adamant to not let the nausea creep in as then it’s harder to get rid of. What other drug have they given you as I’m not sold on Domperidone entirely. When I rang with the headache they said Aspirin is fine as an irregular painkiller a few times a day for a few days but I’ll check again next week!
I only do one GCSF injection per cycle so last night I did my 6mg (0.6ml) Pelgraz injection and am a little concerned that I feel no side effects today at all? Last time I woke up, it felt like I had lava in my bones?
Day 2 was better than Day 2 last time by a country mile too.
Almost feel unnerved by how much easier this feels since chemo is cumulative.
I hope you have a great Day 2 and aren’t too queasy! Get that Domperidone down you (or the other one) if you do. I ate shed loads yesterday but compared to Cycle 1 when I went 6 days with barely touching a thing! Odd how different it is this time!
Yikes…it’s iron filings central this morning from the baldy head! It’s going at lightening speed. Looks like I’m swapping my chubby Sinead O’Connor look for a shiny balding middle aged man look instead!
They gave me 125mg aprepitant at 2oclock yesterday then I’ve got to take 80 mg today and tomorrow at 2 pm I also gave me ondansteron 8 mg to take last night , my new prescription is for 4mg ondansetron to take 3 x a day or when needed, think I also had anti sickness drip yesterday but I’m assuming a could take one of those this morning but they didn’t say I could or couldn’t and my chemo brain made me forget to ask.
I also look like a strange old man this morning my small amount of remaining stubble on my head doesn’t seem to know weather to stay or go and got a lovely array of grey mixed in, I use a lint roller instead of a hairbrush which works a treat
So glad your feeling ok , it’s helping me to stay positive for next coming days, I don’t feel too bad just not my self if you know what I mean xx
I’ve taken the tablet just figure on the grand scale of things one extra sickness tablet isn’t going to hurt with everything else I’m taking , and just starting to feel a bit queezy so if I can keep the sickness away it’s a win, will pay the price tomorrow when I can’t go to the loo
Hello all, I’m relatively new here and I’d just like to share my story.
I was diagnosed in February with ++her2- invasive ducal cancer, 9cm tumour and smaller 1.7cm tumour in my right breast that has spread to lymph nodes.
What a whirlwind few weeks that was! I have 2 small children (3 and 1) a wonderful extremely supportive partner and 2 little black cats, one of which definitely knew something was going on before I did! Very clever little cat.
Anyway, after a very scary short few weeks of waiting I had 6 biopsies, plenty of scans, doctors appointments and a very nerve wracking phone call to gladly inform me it hadn’t spread anywhere else. We were worried about a small spot on my liver that they determined to be just a cyst. Obviously this is always in the back of my mind that they may have misdiagnosed but my key worker assured me it wasn’t anything to worry about.
I was quickly fitted with a PICC line and then 4 days later had my first chemo.
My treatment plan is EC for 4 rounds and then Taxol for 12 weeks. Followed by a full mastectomy and node clearance, radiotherapy, hormone therapy and more. I forget what the rest is.
I’m currently recovering from cycle 3 of EC.
It’s been a fun ride so far. I’ve never spent so much time with doctors in my life.
First round of EC was an absolute shock to the system. I think I had every symptom possible. Ended up practically bed bound for 8 days. Second was no better, that one landed me in hospital for 48 hours being treated for dehydration and a week after that I was back in with a raging temp, gladly nothing to worry about.
My oncologist then decided it would be best to delay my 3rd cycle as she suggested I give my body a bit of time to recover and it did me the world of good. We were doing EC every 2 weeks but now we’re on every 3 weeks. Cycle 3 has been so different, symptoms are still there but so much more manageable than they were the first 2 cycles.
I’ve decided to give the cold cap a try and so far I’ve probably lost about 40% of my hair, no obvious patches but it’s definitely a lot thinner. I haven’t high hopes that I’ll keep it all as I’m shedding like a husky dog in the summer but it’s been a lot easier to handle the hair loss this way. I never thought I’d be that worried about my hair as I’ve always had a love/hate relationship with it but this way I’m able to manage it myself and when it comes to shave day, I’ll be ready.
I would love to connect with others that are going through the same/similar.
How are you all managing your treatment and side effects?
How are you coping at home?
Any advice for my next step with Taxol would be great, I’m particularly anxious about this chemo as I’m having it weekly.
I never thought in my life that I’d be going through something like this. I’m 35 and have always had that “it won’t happen to me” attitude as I keep myself relatively fit and healthy. Oh how humbling this experience has been!
It has opened my eyes to a whole new level of empathy, understanding, compassion, love, gratitude and it had definitely made me realise how short life is and how cruel it can be sometimes.
Sending lots of love, positivity, and healing to all going through this.
Here are some links that may be helpful for you. I noticed you mentioned you are 35 so the younger women together group may also be helpful.
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
Take care
For anyone interested BCN are running a forum users surgery, if you have the time, here’s the link
Hi, I’m on EC too, but every three weeks. For the first one, one of the anti-nausea drugs caused my blood pressure to drop dramatically and meant that I was house bound for almost 2 weeks. I had realised that one of the anti-nausea drugs was making me feel much more nauseous (!) so for the second, my oncologist stopped that drug and the dizziness stopped too. I really hope they sort it out for you. It sound horrific.
Hi @sarahb20 thank you for replying to me that’s interesting that you mention the dizziness in relation to the anti nausea drugs. I’ve been dealing with a bit of dizziness this cycle too and it has left me unable to function properly.
If you don’t mind me asking, which anti sickness drug was it that was making you feel dizzy? It didn’t even occur to me that my meds could be causing these side effects too. I am currently taking cyclizine as my “when I need it” drug, which has been great at keeping my nausea under control during the day but I have been particularly dizzy this cycle. I wonder if it’s related. Xx
@sarahb20 i was taking domperidone to start with but it really did nothing for me, in fact i do remember i felt worse after i took it. I lasted a few days first cycle, thinking it was normal before my team changed me onto cylclizine.
I have ondansetron too but I only take it for the first few days after treatment (as instructed by chemo nurse) that seems to work well for me too.
I hope you manage to find something that works well for you soon. Don’t suffer on, as I’ve been told by the helpline many times
but I’m feeling ok this morning , slight headache but not too bad , the doctor did a tell me it’s best not to take anadin extra as they contain aspirin,
that’s interesting that you mention the dizziness in relation to the anti nausea drugs. I’ve been dealing with a bit of dizziness this cycle too and it has left me unable to function properly.