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August 2020: starting chemo.

nickik
Member

Re: August 2020: starting chemo.

Hi Amy

 

Good news on your tumour size 👍 👌 I too had some good news that my tumour is shrinking I had an Mri a week ago, so it feels at least you are going through all this for a reason!

I still have a way to go with my treatment, got my 3rd EC treatment on  Friday, then 1 more to go followed by 12 weekly treatments of something else...I cant even think about that stage yet. Then surgery to follow ..I can only cope with bite size thoughts of my treatment otherwise I get overwhelmed.

Good luck for tomorrow hope side effects are minimal.

Nicki x

Amy1988
Member

Re: August 2020: starting chemo.

Hi. Hows everyone getting on? Im starting my 3rd round of chemo on thursday, i'll be half way through. I had my tumours checked today and they're softer and smaller, im relieved the chemo is working. Ive been booked in for an ultrasound and my heart has to be checked again. Im really freaking out now about surgery, i know it will be end of this year/ early next year. Im such a worrier and ive never had an op before. Side effects haven't been too bad this round but just found i had a few extra ones! Very frustrating. And chocolate doesn't taste the same anymore, im gutted i can't really eat it now lol. Hope everyone is ok and getting on well with chemo well

Amy1988
Member

Re: August 2020: starting chemo.

Hi lucy. Im about to start my 3rd round of chemo this thursday. Im nearly half way through like you (and im freaking out lol) and my consultant did a check up on my tumours today. I thought they did them half way and at the end. Hopefully you won't have to wait long for yours. But the waiting is stressfull, i couldn't relax until i had been checked. But ive got to have an ultrasound soon too. Sorry to hear you're not feeling good. I haven't experienced the hyperness, but ive had a few strange side effects. I think we just learn as we go. I hope you get your results soon 

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Renpen ❤️ Glad round 2 being bit kinder and you are managing better 👍 chemo really is like being on a rollercoaster you just have to hang on and keep 😁 even though you might be 😳try keeping 😁 break cycles down into weeks rather than the months left, it does help it go quicker 💪 you do what you have to do to get through chemo, little treats along the way help 👍❤️ You might not think so but you are doing great 👍❤️ You all are ❤️👍💕💕Shi xx

renpen
Member

Re: August 2020: starting chemo.

Hi Lucy

so sorry you are still waiting for test results. The waiting is as debilitating as the chemo I think.

my onc told me they would ct scan at midway point to give a progress update. I’m day 5 after my 2nd session today. Not quite as bad as last time as I’m managing the sores but still have the runs and am barely able to get up. My 80 year old mum has come to stay as my husband is away and I genuinely can’t manage on my own, which is sort of the blind leading the blind!Hoping that this will pass and maybe it might get easier as I get used to it. My last stinky chemo is in December which seems a mighty long time away!

good luck for your results, let Us know how you get on x

lucy53
Member

Re: August 2020: starting chemo.

Hey all & sorry for the delay responding. thank you for the hair scarves tips - i've still not had the balls to go skin head but thinking that this will be sometime very soon. i'm on day 5 after 3rd EC round and felt worse than ever this last week. missing the hyperness i had initially must of been deluded thinking it would continue to be that easy.. the last biopsy came back inconclusive so to get another one to see if its on other side as well as initial diagnosis. seems to be taking forever. i got asked today when i would find out if the chemo is actually working or not.. does anyone know if theres a standard follow up check or is this something you just need to wait and see after the full chemo plan is complete? i'm almost half way through (crazy writing that time seems to of flown in) i'm worried that they will put me on more if biopsy doesnt come back clear. diagnosed in July and still waiting on results it seems never ending. xx

Mindy63
Member

Re: August 2020: starting chemo.

Sadly admitted to hospital for IV antibiotics so no gardening. Nice view though. 
Tara, Hope last chemo goes well. That’s great you are nearing the final hurdle (chemo wise anyway).

Im guessing Christmas is going to be very odd this year for all of us. Who knows how it will look. I’m just hoping for 1 family day with my grown up but still young kids.  As long as they behave themselves!

ttyler
Community Champion

Re: August 2020: starting chemo.

Hi Marie,

sorry to hear that your chemo has been delayed. Fingers crossed it can go ahead next week so that you can spend time with your family at Christmas time. I think this is the most important thing fir all of us at the moment. I know I have my fingers crossed that I can have my final chemo next week. I am aiming to have all my treatment done and dusted by Christmas.

 The weather has been lovely here, great if you enjoy gardening. Get out there whilst it’s still nice!

 Hope everyone is feeling as well as they can today.

 Love 💕 Tara xx

Mindy63
Member

Re: August 2020: starting chemo.

Wee update: I was due chemo 3 today but it’s been postponed. Looks like I’ve got an infection in mastectomy wound with cellulitis.

Feeling really scunnered as I kept voicing my concerns. On high dose of fluclox and it still looks the same. Hoping this only delays things briefly as I’m hoping to have chemo over by Christmas so I can see my children.

on the plus side, I’ll use this bonus week to get things done in garden. Halfway through cutting grass but having a wee break.

Good luck all x

 

Mindy63
Member

Re: August 2020: starting chemo.

Hi Renpen,

I saw those squeezy bottles. Am def going to get one. I hope your 2nd dose of chemo is easier on you. I’ve found it tough but have felt better from day 11/12 this time round. I actually felt almost normal yesterday ( day 14).

I think the injections are compounding the side effects for me as I feel better 2 days after they’ve stopped.

Fingers crossed for you. 
Maire x

renpen
Member

Re: August 2020: starting chemo.

Hi Marie

the list of things this chemo causes is never ending isn’t it! I do worry what sort of state I’m going to be in by December as I have failed to coped with the first blast so miserably.

Anyway I just wanted to say that I bought a 'travel bidet' from the amazing website. It’s basically a squeezy bottle with a nozzle that you use to squirt yourself clean. I find it really useful, I use slightly warm water and follow with moist toilet tissue. It’s just a bottle so probably a rip off at £10 but it does the job and I would definitely recommend it.

I'm on day 14 today and feel I’ve really turned a corner towards feeling a bit more human, but getting nervous already about the next blast. An old friend of mine says you have to think that chemo is your friend, it wants to make you better and I have to try to remember that and embrace it.

stay strong all xx 

Amy1988
Member

Re: August 2020: starting chemo.

Hi nicki. I was back in the hospital 6am yesterday morning, i really don't want another trip back there soon! My hair is still coming out too, but tiny little strands. But it feels so cold lol. I keep going light headed too and ive got terrible acid reflux today because of the amount of laxatives i had to take. Ive still got so much to learn about chemo and side effects lol. Yeah, my taste buds are changing too, certain foods don't taste the same anymore. Glad to hear you're ok and hope to hear from you soon

nickik
Member

Re: August 2020: starting chemo.

Hi Amy

Sorry to hear you had to go to hospital, glad you were ok tho.

Of course  I don't mind you asking about my hair and yes I did get it clipped to a number 2 and its mostly gone now....It was one of the worst experiences I had when it was falling out in handfuls but now getting used to this bald head I keep catching a glimpse of in the mirror. It is really weird not having hair to brush or straighten isn't it.

I don't feel too bad at the moment ...a little light headed and I have tender spots on my back and arms ...another weird thing happening! I also can't taste much at the moment either.

Hope you are ok xx

 

 

 

ttyler
Community Champion

Re: August 2020: starting chemo.

Hi Renpen,

 glad to have been if some help.

 Take care!

 love 💕 Tara xx

Mindy63
Member

Re: August 2020: starting chemo.

Renpen, I’ve just read of your awful experience. What a really terrible time you’ve had. Your poor mouth.

Just before my chemo started I bought a sonic toothbrush and I really feel it has kept my mouth cleaner than my previous electric toothbrush. I also have been having the odd spoonful of Manuka honey for my digestive track and throat. No idea if any of those have helped but I’ve had no mouth problems. But then I’m on EC chemo so not the same regime. I also swill about my mouth with salt water from time to time. Last time I had chemo I couldn’t tolerate the mouthwashes.

When I was on doxetaxol last time I also found Heinz cream of tomato soup tolerable because of its viscose texture.

Ive also experiences bowel issues to the extent it is too sore to wipe. I’m planning on buying a wee portable bidet to help with hygiene and pain relief.

My current issue seems to be mild urinary incontinence. Just the occasional leak. But I’ve never experienced this, even after having 3 big babies! I’m going to mention at my next appointment.

Its so tough to go through this and I must admit I’m really beginning to wonder if it’s really all worth the impact on future health. I had no lymph nodes involved but will be getting Zometa as well as chemo and hormone therapy.  I’m at the point where I’m going to ask to have my other breast removed as a preventative measure. Never want to go through this again!

I hope you start to feel better soon, along with all going through this tough treatment, especially during this unrelenting pandemic.

Maire xxx

renpen
Member

Re: August 2020: starting chemo.

Hi Tara

thank you for the Vaseline recommendation! Definitely helped xx

Penny  💕 

ttyler
Community Champion

Re: August 2020: starting chemo.

Hi Renpen,

it seems like you have had an awful time with side effects, I hope you are feeling more comfortable now.

 I had a couple of the side effects you are describing when in FEC, although no where near as severe. In regards to the upset tummy I had this in the first cycle, not right away but in the second week. I rand the direct dial number right away and my husband had to go and get a sample bottle for me. Admittedly, I did have to wait a couple of days to see if I had an infection, but it was clear so could take immodium. It might be an idea to get into the number right away if you get the same symptoms next cycle.

 I have just had my second cycle if Docetaxel and although I don’t have ulcers down below I did have some gnat bite like spots in between my legs first cycle. I found running Vaseline in them and sleeping with no clothes on helped. The air seemed to get to them and soothed the area. I had the same problem oN Friday night a day after my second round so did the same again and it has helped. Once again please ring your unit before giving it a go and see what their thoughts are. It’s all trial and error I find. If you have no luck you could always ring the nurse support line on this site for assistance.

 Mouth ulcers are the worst. Again I have been quite lucky I have a sore mouth and have had oral thrush, but this was cleared up with antibiotics. 

 All I would really say is keep in until you get things sorted. Don’t suffer and ask for a second opinion if you are not satisfied.

 Hope everyone else is okay and not suffering too much. I bet most people are a third if the way through chemo now. You are all doing so well. Keep fighting, you will win the battle.

 Take care all

Love 💕Tara xx

Amy1988
Member

Re: August 2020: starting chemo.

Hi nicki. I had a simular skin problem on my back too. I expected there to be a mark there or something but there was nothing, really weird! Im due to start the injections again tomorrow, ive got plenty of painkillers lol. I had to go to the hospital yesterday with my bowel problems. They said my stomach felt fine and done blood tests and another covid test! Theyve sent me home with laxatives but no luck so far. You're right, theres always new things to deal with on this journey. I forgot to ask, did you get your hair shaved off in the end? Hope you don't mind me asking. I find it really weird that i don"t need to dry or straighten mine anymore lol. Hope you're ok

nickik
Member

Re: August 2020: starting chemo.

Hi Amy 

Yes I am to on anti depressants so its another drug to add to my body and remember to take. Yes to the injections too, last time I was ok until day 6 of having them and then felt like I was having labour pains, they were horrendous!.

I too have problems with going to the loo unfortunately and my appetite isn't great either.

I also had a weird skin burning, tightening sensation just on my face yesterday, almost felt like sunburn and puffiness under 1 eye. They advised to take an anti histamine and it mostly went in the end, apart from under my eye. There always seems to be something new lol!

 

renpen
Member

Re: August 2020: starting chemo.

Hi Everyone
I'm now 10 days on from my first chemo including docetaxel and carboplatin. It’s been quite a week, although I don’t remember all of it I thought it might be useful to share some info in case anyone else has similar experiences.

i ended up being admitted to hospital on Wednesday night after sever diarrhoea and mouth sores left me dehydrated and really weak.

The mouth sores have been horrendous. The whole of the inside of my mouth was covered in ulcers and sores. If I fell asleep I had to peel my lips from my teeth. I couldn’t bear any food in my mouth and was struggling to drink. In the end what helped was a combination of difflam mouthwash and gel clear mouth rinse. The difflam is really astringent so I had to dilute it at first as it was so painful. I also bought an ultra soft toothbrush online, the baby ones I was trying to use were too sharp. And some aloe toothpaste made a difference too. When I started eating again the only things I could tolerate were soggy rice crispies, mashed potato, well cooked rice and jelly. Everything had to be left to go cold.i am slowly increasing this now but have lost nearly a stone in 10 days! The other thing that helped was liquid paracetamol instead of tablets, basically Calpol!

The diarrhoea was horrific, really acidic so it hurt a lot. With hindsight I should have started on Dioralyte straight away but I had expected to be constipated so I’d stocked up on laxatives and prune juice. When I started taking Imodium it seemed to make the stomach cramps terrible. At the hospital they gave me buscopan which helped a lot.

Eventually they identified that the stomach upset was actually a bacterial infection, probably caused by injecting faeces from organic salad that hadn’t been washed properly. I had been forcing myself to add spinach leafs to every meal ,thinking this would save mY life but it actually made me really ill.  So I was right about the Imodium, I needed to get a bug out of my system. If it hadn’t been for one of the nurses suggesting a stool sample they would have still been trying to block me up. 

The hospital visit wasn’t a  great experience. I’d been in the day before barely able to function and was dismissed by the dr who basically told me to expect to feel sh*t after chemo when I think it was fairly clear I needed a drip and some fluids at least.

if your end up going to hospital I would strongly recommend taking your own drugs with you. I was there for nearly 4 hours before I was given any pain relief, it took 3 hours to be seen by a doctor. If I’d had paracetamol and the mouthwash with me this would have really helped. In the night I waited 1.5 hours after requesting pain relief- it was only paracetamol so if I go in again I would self medicate, they said this is acceptable so long as they know. Also it was a problem that I didn’t have my injection with me.
there was a massive problem with the pharmacy at the hospital. They didn’t seem to have  supplies on the ward so I waited 3 hours for the mouthwash. When I was discharged they ordered supplies for me to take home. After 2.5 hours of waiting to leave I gave up on the hospital pharmacy and spoke to my GP who arranged an immediate prescription for me to pickup on my way home. I wish I’d thought of that sooner! My GP has also done a prescription exemption form for me which everyone who has cancer is entitled to, regardless of income etc.

My other recommendations for hospital would be: take some moist toilet tissue. The hospital stuff is fierce and there’s no option to shower etc. Keep some films etc downloaded  on your phone/ tablet just in case you need to go in..

I have also had to purchase suitable nightwear. Generally I don’t wear pjs. I managed to find a below knee length t shirt style nightie so I’ve ordered a few just in case.

I am now getting better every day, although if anyone has any advice about my current issue I’d be really grateful. Basically I have the same condition that I had in my mouth around my genital area. The skin is so raw that it bleeds when you touch it. They treated me for thrush initially, and my gp has given me a hydrocortisone cream but I think that just took the skin off and made it worse. I’m using sudocrem but it’s not doing much.  Any suggestions gratefully received.

Stay strong everyone! I read about you all going through this with young children and I’m amazed at your strength. I honestly have been barely able to pour a glass of water this week, I haven’t prepared a meal or loaded the washing machine. If you are managing daily stuff at all then you are doing great.

 

Amy1988
Member

Re: August 2020: starting chemo.

Hi nicki. Im on antidepressants too, i suffer with anxiety and depression. They did mention taking something 'extra' to help but im not keen at the moment. I think i feel a bit better prepared this time round, as ive bought loads of meds for previous side effects from round 1. Its so frustrating, i had been feeling quite well about a week before round 2 and i knew that would soon be gone! Do have the injections at home for days 5 - 10? Im dreading them, my joints were so painful when i finished them. Thankfully no sickness yet, but im feeling really bloated because i don't seem to be able to go to the loo for nearly a week! The joys of chemo lol. Hope you're feeling ok, we're all get through this

nickik
Member

Re: August 2020: starting chemo.

Hi Amy

I'm on day 1 of round 2 and had a good night sleep which I didnt have on round 1. I feel heavy and lethargic but not as out of it as last time. I take a sedative to get me into chemo as I get so anxious and this time took half the dose which just took the edge off, last time I was completely out of it for a a day and a half and my oncol said it was the sedative not the chemo??    Its all about balance I'm finding and what works for you.

However I havent taken the steroids yet and they gave me a stonking headache for 2 days last time but preferable to any sickness.

Nicki xx

 

nickik
Member

Re: August 2020: starting chemo.

Hi Lucy

I have bought a couple of scarf /wraps and I'm teaching myself how to tie different turban styles from YouTube ( on my good days).

I have a decent wig that I collected before I started chemo very like my own hair so it felt like me.

Also sent for a ponytail wig with a wide hair band attached from etsy.. https://www.etsy.com/uk/shop/headscarvesbyciara1?listing_id=770516579&ref=shop_overview_header#items

They take a while to arrive tho.

I clippered my very long hair to a number 2 last weekend (as it had become very sore and falling out at great speeds which I found so alarming) on the advice of a hairdresser which has worked really well as you tend not to get ingrown hairs and sore bumps etc and I find the rest of the hair falls out in a manageable way. Another good tip she mentioned is the hair you have left on your head after your buzz cut can be taken off with a lint remover ( for removing hairs from clothes). Its amazing it stops all the little hairs getting in your bra. I'd be interested in any other hair ideas people have too

Nicki

xx

Amy1988
Member

Re: August 2020: starting chemo.

Hi. Hows everyone getting on? Im on day 3 (very early, 3am!) Of round 2. I felt nausea on 1st day which is a nuisance but no sickness like last time yet. They decided to give me my antisickness in injecton form this time prior to the chemo so maybe that helped. Ive had a heavy and sore head too and don't really feel 100% 'with it'. But im hoping things won't be worse than the last time. 

SarahT20
Member

Re: August 2020: starting chemo.

Thanks Lucy, sounds like the same thing. I wonder if it's a sign that I'm about to start losing some hair. Time will tell I guess!

Take care xx

lucy53
Member

Re: August 2020: starting chemo.

Hi Sarah - i had the same & used cold cap too.  had dull sore head/scalp the week after treatment then started getting itchy 2 days before 2nd EC. hair starting to fall out now - hoping its just thinning as no mass chunks but its coming out in strands everywhere..

x

SarahT20
Member

Re: August 2020: starting chemo.

Hi everyone

Has anyone else had a really sore scalp? I'm 9 days after my first EC (with cold cap) and my hair seems to be staying put, but my scalp is so sore it's giving me a permanent headache. Has anyone else experienced this?

xx

Mindy63
Member

Re: August 2020: starting chemo.

Lucy, I think Being sick was partly psychological as you say and also I triggered my gag reflex when brushing teeth. 
Ive bought a couple of hats online just from general online retailers. Waiting for wigs from ‘Simply wigs’ as I hate the one I got locally.

Any website I look at just seems to scream Chemo. My sister got a few skip caps and attached some hair pieces. Seemed to work quite well for her.

Hugs

Maire

lucy53
Member

Re: August 2020: starting chemo.

Where are the best places to buy some cool head gear for when my hair falls out (molting more this morning) i have a wig ordered but keen to hear of other ideas as an alternative!

lucy x

lucy53
Member

Re: August 2020: starting chemo.

Hi Maire 

i felt like i was going to be sick on my way to chemo on wednesday - i'd found the anti sickness tablets worked fine til then. not sure if its they psychological dread of it being chemo day. trying to stay positive but i think the day before and the day of are going to be right offs for me. i get so grumpy!  

Mindy63
Member

Re: August 2020: starting chemo.

Hello folks, 

Glad to hear we’re all getting through this day by day. Tough though.

Im day 10 after 2nd EC. Starting to feel a bit more human after nausea and awful heartburn. I was sick just before my 2nd chemo so it might’ve created conditions for acid stomach. 
I cold capped again but hair is pretty sparse and coming out daily. Noticeable bald areas and it just feels horrible.  I might give it another go on My last EC if only to protect the new follicles that might emerge.

Going to try to get out for a walk today as I’ve become pretty inactive over the last wee while. 
Keep powering through xxx

lucy53
Member

Re: August 2020: starting chemo.

Had my 2nd round of EC yesterday - used cold cap both times but noticing a fair bit of  hair shedding today. only bonus if it falls out then will reduce time in for chemo round 3. also feeling more sick than last. eating/sleeping ok but waking up loads through the night. i hope this is just a bad day & find some of they hyperness i had after round 1 x

Amy1988
Member

Re: August 2020: starting chemo.

Hi chantal. My hair just felt like straw after about a week of chemo. It was coming out by week 2 but my consultant said she expected it to be gone by round 2. My eyelashes and eyebrows are ok for now. Ive had my 2nd round of chemo today. I feel ok but a bit sick. Hope you're ok 

Chantzy1
Member

Re: August 2020: starting chemo.

hi Amy,

Hope you are doing OK had 2nd course of ec chemo last thursday my head is really itchy and shedding and cold even though had cold cap didnt knowvif this is normal only after 2 courses eyebrows are ok but losing eyelashes now too really contemplating the shave don't know if i can put up with this for another 6 courses what are you doing 

Love and care chantal xxx

Amy1988
Member

Re: August 2020: starting chemo.

Hi becci. Sorry to hear you're not feeling good. I spoke to my consultant today and she said not to expect much different to my 1st round for side effects. So hopefully you wont be too ill this time round. Don't worry about late replies, i struggle to keep up with most things these days, i call it 'chemo brain' lol. Ive definitley got that f*** it attidude too. Before all this, i used to have low confidence and struggle to go out. I got help so ive learnt not to care too much about what others think now. If they stare, i stare back! 1 of my nieces did cry when she 1st saw me without hair but now she doesn't even notice. My head gets really cold too. I don't wear anything on it at home but i put on a headscarf when im outdoors. I can't wait to go wig shopping lol. Try all the colours and styles, you might be suprised what you like and what suits you. I hope you feel better soon

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

The steroids can have you bouncing off the walls and sleep patterns go out the window, do speak to your team about it and ask for any advise because it’s impacting on sleep ❤️💕💕Shi xx

FindingDory
Member

Re: August 2020: starting chemo.

Hello ladies, 

It’s been a rough few days for me since Friday’s EC but not as bad as last time and i’m feeling a bit better today. Still had some nausea and not much appetite (thanks to the awful taste in my mouth again!) but managing to drink lots & get some food down me this time so hoping i’ll feel much better by the end of the week. Getting some fresh air yesterday helped my mood, even if i was only out for about 20 mins so i’m going to aim for a short walk every day.
Does anybody else suffer with the 2 days of steroids they give you? I couldn't get to sleep Sunday night, even though i take them as instructed at 10am & 2pm. I was so tired then all day yesterday & slept from 8pm til 6:30am this morning! 
Anyway, i hope you’re all doing ok & i’m thinking of you all. 
Big hugs, Becci xx

FindingDory
Member

Re: August 2020: starting chemo.

So pleased for you renpen, i’ve been in the exact same position and it was just the worst wait ever for me, i cried with relief for most of the day! Mine was also stage 3 grade 3 with lymph node involvement, but we’ve no spread & having our treatment so we’ll get through this, 

Big hugs, Becci x

FindingDory
Member

Re: August 2020: starting chemo.

Hi Amy, sorry i’m late replying - been feeling rough after my 2nd dose of EC but its not been as bad as last time at least. 
I’m so pleased that you also feel better after taking the plunge & shaving it all off! I honestly thought i’d feel terrible about it, but bizarrely its gone the other way for me, it’s given me a bit of an attitude of f*** it, i think!😂 I went out for a little walk yesterday with my partner & 2 year old to get a bit of fresh air & didn't bother covering my head, although it was a little chilly! I have been trying some different headscarves & hats to see what suits me coz i think we’ll definitely need them now the colder weather is coming! I’m going to make the appointment to go get my wig when i’m feeling a bit better but i’m really not sure what to go for - stick to blonde & curly or try something a bit different? 
It really is surprising how having cancer can give you a new found confidence, i really couldn't care less what people are possibly thinking about me anymore, i’m glad to be alive & have far more important things to be thinking about! 

Big hugs, Becci x

Amy1988
Member

Re: August 2020: starting chemo.

Renpen

Thats brilliant news! That must be such a relieve for you. I was covinced for 2 weeks mine had spread, it drove me crazy. But now you can focus on getting rid of the cancer. I hope you're feeling better now

Nickik

I honestly can say that 2 days in after having my hair shaved off, im feeling more confident. I didn't want anyone to look at 1st but now it feels quite normal. You will feel better once its done because you've taken control before the chemo does it. Good luck! 

Mindy63
Member

Re: August 2020: starting chemo.

It’s a low moment. I certainly cried big tears. But I kept a photo journal when it started to come back in. Looking back over it was uplifting. I’ll post here somewhere if I can. Within a month of last chemo my hair was sparse but growing. Within 3 months I could go wig free (I was on holiday and didn’t care).

Ive cold capped but it’s all going to go again this time. It’s just delayed it a bit. I might try it again on chemo 3 but I’m not persevering through doxetaxol if I’ve lost it all.

2 wigs ordered!

nickik
Member

Re: August 2020: starting chemo.

I have been dreading my hair falling out and was probably in denial thinking it wouldn't happen to me but yesterday I brushed out a carrier bag full and cried a lot! Today my son is going to cut my hair ...I hope I too will feel better xx

 

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

👍❤️Fantastic news for you renpen👍 💕💕Shi xx

renpen
Member

Re: August 2020: starting chemo.

Some good news! Had my ct scan results back and there is no spread beyond the lymph nodes! Phew! Best sleep in weeks last night!
so still Grade 3 Stage 3 but I’m feeling so much better 

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

❤️Amy, It’s massive step ❤️ when you’ve finished your treatments for hair regrowth use a lush shampoo bar called new, looks like a red dot and sunny isle extra dark Jamaican black castor oil, rub the black castor oil on head and leave for about hour, then wash off with the red dot shampoo bar 👍 keep doing it daily, it’s helped lots of us get hair back 👍think others have used alpecin (that caffeine shampoo) and had good results with that. For eyelashes when they start to grow back start using mascara even when very short, you need to retrain the lashes to curl 👍 😘💕💕Shi xx

renpen
Member

Re: August 2020: starting chemo.

Wow Amy1998. Well done for being super brave. Bet you rock it 😀 this is the attitude that I need to grab hold of. Impressed! 

Amy1988
Member

Re: August 2020: starting chemo.

Ive had my hair shaved off! Ive been so emotional about it all day but now that its done im really not too bothered now. Good luck to anyone else whos had this done or about to. Im telling myself, its part of this journey and it will grow back. 

Mindy63
Member

Re: August 2020: starting chemo.

Hello again everyone,

Nice to catch up with your journeys. Even though it can be a bit of a lonely adventure, it helps to know we’re not alone and that we all have our ups and downs. 
I had my 2nd EC yesterday. Just before I left the house I vomited. Damn. I had gagged brushing my teeth. And instead of waiting for the stomach spasms to die down I had rushed about getting ready, then barf. I swithered about letting nurses know but decided against it as I really think it was nerves and a sensitive gag reflex. Not pleasant wearing mask during chemo though.

Chemo process was quick and uneventful. Cold capped again. I don’t find it too bad but then I’m quite insensitive to cold. I’m not sure it’ll be worth it as I’m also losing small animal amounts of hair now. I think it’s delayed the process rather than stopped it. The nurse suggested the loss may slow down as there is better contact as I have less hair. I think I’ll be bald pretty soon so not sure it’s been worth it.. As Finding Dory says, the feeling of hair coming out is worse than living with the baldness (I remember that from last time)
I’ll keep you posted. 
Last night, I was starving, for first time since starting chemo, so I wolfed down a steak pie etc. My stomach groaned all night and I prepared myself for sickness but managed through the night quite well and have not experienced any nausea at all so far. Think they upped my meds. Feel a bit dizzy today but I’m going to take the advice of others and try a daily walk. I felt too weak last cycle but have been getting leg cramps which I’m worried is due to inactivity. So I’m def going to get a bit more active. I’ve got a wee Loch on my doorstep so I’ve no excuses. Sunny here (outside Glasgow) too.

Welcome Sarah, hope you get some good news re chemo regime after your echo. Think mine’s was about 60. Felt I’d failed a test but was told that’s quite normal. Apparently no one gets 100. Or so I was told (I asked).

Amy, you asked about cold cap: when I asked yesterday the nurse said it works about 50% of the time.  Last time I had chemo I felt an odd tingling sensation in my scalp before all my hair came out. I didn’t get that this time but am losing huge handfuls of hair now. So I don’t think it’s worked for me.

Katbee, your hair loss sounds the same as mine, maybe it’ll be less next time but I’m not sure I’ll have any hair left by chemo 3.

Last time I had docetaxol very fine hairs started to appear on my scalp. Almost like the soft peachy hair you have on you face that’s almost invisible. So I’d say it’s much less harsh than Epirubicin in that respect. I had cyclophosphamide with my doxetaxol. So even on that combo I did have some fine regrowth.

Mbee, your chemo effects sounds quite similar to me last time I had it. A tough first week then a gradual recovery. I wonder if it’s because I’m older and less fit this time (I’m 57) that I’m finding it tougher. Also mastectomy is taking a looooong time to heal and that’s a bit draining. Hope the rest of your chemo follows the same pattern.

Finding Dory, good luck with your chemo today. It’s a bugger when you get a delay but hopefully it gave you a wee window to recover. Your hair is very like mine was 10 years ago. Wait till it grows back it, it gets a bit mental. I remember the last time I had chemo the oncologist said to me as I sat before her bald headed ‘Oh dear, it might grow back curly’ and pulled a face. One of the anti curly brigade! I managed to leave her office without kicking anything over.

You look great with the shaved head by the way. Good luck with wig shopping. Not easy to find a curly one. Brace yourself!

Good luck to everyone else, I’m trying to keep up but find the layout a bit confusing. I’m finding all the posts helpful though. We’ll all get through this wee adventure together xxx

nickik
Member

Re: August 2020: starting chemo.

Hi Becci

Its day 14 for me today and I can see loads of hair in my brush. I think you are so brave to shave your hair and post a pic!  I will not be as brave I dont think, when the time comes, I am getting really upset about it ( didnt think I would). I"d even sorted out a wig before my treatment started!  Hope the next round is not as bad for you. I see my onc next week and have a load of questions for her, I luckily wasn't sick but have felt so wiped out and the first 2 days I can hardly remember.

Nicki xxxx

Amy1988
Member

Re: August 2020: starting chemo.

Hi becci. Well done! It suits you. My hairs coming out loads in the hairbrush too. I think it'll be shaven off this weekend. Will you wear a wig or headscarve? Ive still got to choose a wig but have got a couple of pretty head scarfs. Ive got young nieces and i do worry about their reaction/ feelings about my hair. But i think kids adjust quite quickly