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January 2019 chemo starters

Kip
Member

Re: January 2019 chemo starters

hello Ladies, I did reply this morning with but it seems to have disappeared...anyway...I'll try again.. forgive me if this comes up twice at some point..

 

Mama Ju Ju - regarding Hand and Foot Syndrome,  I had a word with a lady from my June Chemo thread who had this and this is what she said:

 

It’s a serious side effect and I had to stop Docetaxel immediately.  I found even if I’d walked a short way my feet felt like they’d done a 50 mile hike.  The toes blistered and the sole and sides of my feet turned bright red.  The skin then started peeling off.  The spaces between my fingers also started turning red and blistering especially between my thumb and first finger.  Very painful.  If so they should contact the chemo hotline and ask to be seen by an oncologist who can confirm and alter chemo regime if necessary.  I also struggle with neuropathy from the Paclitaxel so I really would encourage them to listen if the onc  say she needs to switch/stop. 

 

Don't want to worry you but worth getting it checked to be safe.

Take care

Kip

xx

LB
Member

Re: January 2019 chemo starters

Hi MaMa juju - I have felt just the same - chocolate is a definite Nono 🤗 I was advised to keep some pineapple chunks in the fridge and dip in whenever my mouth feels awful - I find it helps and tonic water with a slice of lemon 🍋 and anything spicy and salty like crackers. I hope you find something that your mouth likes🤗 I have turned a corner again and I feel much better than yesterday - I felt very tearful 😢 hugs to all 🤗

Member

Re: January 2019 chemo starters

Hi All,

 

Its me again........it’s been a while I know. 

 

I haven’t had the best of weeks after my 2nd chemo, struggled mentally and physically. I was very teary and the steroids play havoc with my anxiety......I feel as though I am all over the place. 

 

I took the Emend Tablet this time and it did stop me from being violently sick but I still felt really nauseous.

 

My appetite still isn’t back to normal either and that’s me on day 9, I can still feel quite queasy. I love all things sweet but I struggle eating chocolate at the moment.........not such a bad thing for the waistline 😂😂😂😂. Funnily enough I have even struggled with sweet smells......it’s almost like I am pregnant.........but obviously I am not. Has anyone else like that?

 

At the moment I have awful pain / ache in my left foot and I can hardly put weight it. It does look a bit swollen. I was reading that it might be the Hand-Foot Syndrome. Has anyone else had this? I know for sure that I have not done anything to it. I am going to phone my BC nurse tomorrow to get some advice.

 

3rd Chemo is a week on Friday.......not looking forward to it at all but at least it will be 3rd one down and only 3 more to go.

 

So sorry for being such a moan on my post but thanks for listening.

 

Any feedback is welcome.

 

Sending lots of love and hugs to you all.

 

xxxxxxx

Member

Re: January 2019 chemo starters

Hi everyone. I've been tired today, I think the big head shave took it out of me. I'm having ec2 on Friday and my husband pointed out today that I'll be a third of the way through then(kind of) I know that won't apply to everyone but it helped me mentally this morning when I was crying over mamma Mia. 

Member

Re: January 2019 chemo starters

Thanks LB - i’ll have a nose at the website! Hope you feel better soon and get some energy back. I think your description of feeling like a dead battery sums it up beautifully though. Keep going - soon the fog will clear and you’ll be back to normal! 

 

I was advised to try some frozen pineapple chunks by the nurse who did my first cycle - it’s a bit frosty but very refreshing. I’m afraid it didn’t cut through my mouth of cack but it took my mind off it for a bit. 


Member

Re: January 2019 chemo starters

I’m glad you mentioned “battle “ thought I was going mad 😠 I’m having chemo before surgery too , lump hurts , been itchy around area , and slight bruising too , hopefully it means it’s being blasted and doesn’t like it 😄

LB
Member

Re: January 2019 chemo starters

Hi Sparkie2001 - I got my wigs through the hairdresser at the hospital - she uses this company and mine have been lovely - one of them is from the Rachel Welch line :-) www.wigsuk.com Purely Wigs based in Banbury. 

I'm day 6 after FEC 2 and I feel awful.  Dead battery again - like the last time but seems worse.  I felt like giving it all up this morning but I went for a little walk in the park and I think that perked me up a little.  Does anyone else whose surgery is due after the chemo feel that there is a battle going on around their tumour?  I don't know if that's fanciful but it was the same last time - pain and itching and the biopsy bruises coming out again.  I hope that means that this horrible stuff is working. The pineapple chunks and juice that I'm keeping in the fridge are working wonders for my horrible mouth.  Here's to feeling a little better in a few days - Hugs to all xxx

Member

Re: January 2019 chemo starters

Happy birthday Sunnydaze! Hope you had a good time in Glasgow and celebrated in a suitably fabulous style Smiley Happy 

 

Well I finally managed to escape from Casa NHS a couple of days ago and am very pleased to be home in time to enjoy my last few days before the next cycle on Thurs. I didn’t actually feel too bad last weekend, a bit peeky but nothing major but my temp had other ideas and went up to 38 in no time. Chemo helpline were great and just said come straight in and before I knew it I was hooked up to IV antibiotics. Neutrophils were 0.2 for a couple of days but they came up again after a few filigrastin jabs. I then managed to get a cold so that dragged things out even longer but all sorted in the end. Funnily enough I was terrified of neutropenia but in the end it was all very well managed and nipped in the bud. With a bit of luck they’ll come up with a plan this week so history doesn’t repeat itself.

 

Hair has pretty much departed now so am rocking the bald look. I have been mostly occupying my time hunting around the internet for a new wig as the two I have acquired to date are just not doing it for me. I need one that matches my former hair - dragged through a hedge backwards - as opposed to a blow dried shiny beauty! I have rapidly come to the conclusion that wigs that cost less than £30 are not of the same quality as the £100+ mark duh! 

 

Good of luck to everyone getting chemo’d this week and well done to everyone who got collared last week. This soon will end! Xx 

 

ktk
Member

Re: January 2019 chemo starters

Val, Gocat is right. Call your chemo unit if you are unwell and take their advice. Kx

Member

Re: January 2019 chemo starters

Hiya Val.   Yes I think most of us feel better after the first week or so of chemo has passed but we are all different. Are you sure you havent caught a bug or something.  Make sure you keep checking your temperature.  I was told if mine goes up to 38C, to call an ambulance and tell them you are on chemo and they should blue light you to hospital.  

Hope you are feeling better now.  If not maybe give the chemo place a call.   xx 

Member

Re: January 2019 chemo starters

I had my first EC 15 days ago . Sicky first few days , very tired , felt pretty good by day 10 , not sick and little tired but pretty good 😄 then yesterday I felt crap again , really tired in afternoon and sick again and again today . Anyone else had this ? I thought you were meant to feel better as you nearer your next cycle ? 

Member

Re: January 2019 chemo starters

Saw my oncologist yesterday.  3 hours waiting in crowded waiting room.  Then he says dont forget no going to crowded places due to germs etc. Im like hang on, Ive just been sitting in a crowded room for 3 hours lol.  

Anyway, he says I look well.  I said this week is my good week but I had been suffering big time with nausea after each cycle of fec.  He says its ok to double up on the meds.  Im like I dont want to overdose but he seems to thinks its ok to take double.  

3rd cycle of Fec next week Thursday.   Ugh Smiley Sad  

Hugss to all Smiley Happy  

 

 

 

ktk
Member

Re: January 2019 chemo starters

Don’t put up with feeling sick!  If your meds aren’t working phone your chemo unit and tell them!  You should be seeing your oncologist before your next cycle so make sure s/he knows and they can make adjustments. 

 

Sorry about your hair/wig situation. I never bothered with a wig as it was the height of our nice hot summer. I did have to start wearing scarves as the weather cooled and I am in full blown wool that mode now, even with a 2 cm covering!!  Kxx

Member

Re: January 2019 chemo starters

Hi Stuckat14

I'm from December thread. If you've struggled with sickness/nausea you need to let your unit know and they can tweak your meds. Aprepitant (emend) is really good if you haven't had it. My dose of Fec was reduced to 80% after first cycle as my BP dropped very low and I ended up neutropenic. Have you got an appointment with Oncologist or nurse before next appointment where you could discuss this. It's good to go in with a list of all se's you experienced to help them base a decision.

Hope this helps, good luck x

Member

Re: January 2019 chemo starters

Hi everyone, sad to hear about those of you feeling very low about hair. Happy birthday! It is mine a couple of weeks after ec2 so I'm planning to celebrate hard! 

I wondered has anyone had their chemo  dose/anti sickness changed after their first round? I barely left my bed for 8 days and didn't leave the house for 10 and if I'm going to get more I'll each time I'm hoping they will say that my dose needs to be tweaked- a macmillan advisor suggested this as an option. I also didn't feel that my anti sickness meds did anything to make me feel better. Hmph  sorry for moan- I shaved my hair yesterday but am very unhappy with my wig (paid for a cut already- I just made a mistake with style and colour).

 

Big hugs- it is so nice to read this sometimes and know that I'm not alone. Is anyone else here my age? 34?

Xxx

Member

Re: January 2019 chemo starters

Hi Sunnydaze

You could still cold cap from next one onwards. Please don't think because you haven't begun it's too late to gain benefits. It definitely isn't. I know it's hard but we will get through this. X X 

Member

Re: January 2019 chemo starters

Hi Sunnydaze 

So far, FEC3 seems to be being a bit kinder, don't want to tempt fate though as start my 5 Filgrastim injections this evening and they give me horrible migraines! Although glad to be finished with fec, feeling anxious about moving on to 3 THP. Have a lovely, albeit alcohol free time tonight. We went out for tea last Saturday and I thought I'd treat myself to a glass of red...just didn't taste the same! Also have a fun day shopping with your family. My oldest daughter's friend has a house in Glasgow and says it's a fantastic place. I've only been to Scotland once, stayed in a cottage in the beautiful highlands...Muir of Ord, Strathconon. One of our favourite hols, need to get back there although I'm not so sure our 14 & 17 year old would be too impressed 😉 xx

Member

Re: January 2019 chemo starters

Oh thanks for the pineapple tip LB. Glad to know that you’re  managing the se’s well. 😊😊😊 

I also recommend grapes to help soothe a sore mouth, especially if they have been in the fridge. My health visitor told me years ago that grapes (before they were seen as a choking hazard) were great for teething babies and it’s true they are great on the gums. Black grapes are better than green ones, they have more cancer fighting properties. The South African ones, in the supermarkets just now are delicious too.

xx

Member

Re: January 2019 chemo starters

Good morning ladies,

Thank you for popping over from the December thread Dikat. I read the December thread 😊 you ladies are just slightly ahead of me. It’s a tough old journey. How are you managing with FEC3 Dikat? Thank you for the kind Birthday  wishes, too .It’s hard having a special Birthday through all of this hey? it just sharpens the crappiness of the situation. It’s good to chat on here though.😊We know we’re not alone! Anyway, Dikat I am sure we will find time for a little celebration post chemo 🔔. Surgery will be a walk in the park for you after the hell that is chemo. I’m looking forward to staying over in a hotel tonight, eating good food  and spending time shopping with my teenage daughters and husband. Glasgow is such a great vibrant city.It should lift my spirits a bit, even though it will be alcohol free.

Lorraine.1 Thank you for your message.😊 and I wish the same to you too! I managed to get some Rosemary essential oil and an almond carrier oil from Holland and Barrat. It’s currently half price, so that was great, do thanks for that tip. I haven’t got any Biotin yet, but I will. The complex B I take contains Biotin, so I wanted to check with my onc first, but , I will be on it, as soon as I can.😊 I am glad you are able to cold cap. I wasn’t encouraged to do so, but knowing what I know now, I wished I had gone for it, mainly because of the positive benefits regarding re; growth. I was never told about this benefit.😐 I’ll probably have to deal with grey and frizzy/curly. Now that will make me seriously feel like 50! I’m still 17 in my head though. I can understand why you cried yesterday and I’m sorry to hear that, but losing hair is just so dehumanising, as if we haven’t been through enough. Let’s hope for “Better Days” it’s all we can do. Little by little. Enjoy your weekend ladies and I hope you all manage to have some quality time with good  friends and family

sunnydazexx

LB
Member

Re: January 2019 chemo starters

Hi all I had my fec#2 on Tuesday and not too bad with the side effects except getting very zonked and woozy 🥴 in the afternoon/evening. My nurse gave me a great tip - keep some pineapple chunks in the fridge - when I get that horrible mouth I pop a chunk and try to suck it 😊 but it’s soooo soothing 😊 good luck and hugs everyone 🤗 LB 

Member

Re: January 2019 chemo starters

Hi Sunnydaze

I'm from December thread but pop into this one as not far behind you all. I had my 3rd fecking Fec on Wednesday. Just wanted to wish you a happy 50th birthday for next week. I too am 50 this year, July, and this definitely wasn't part of the plan. I'm having chemo first so still a long way to go with rest of chemo, surgery and rads therefore had to cancel plans. Enjoy Glasgow and look forward to making more plans when all this 💩 is finished with xx

Member

Re: January 2019 chemo starters

Hi Helen 

Its hard having 4 and 7 years old going through this. But you have lots of support from your family and it means a lot. My mum is not in this country6and she doesn't even know I am having this.... I didn't tell her do speaking to her on the phone every week I lie. Which I hate. 

I am too ER+ 8/8 Is mine and it does mean that tamoxifen should help a lot in my circumstances. I never had scans. Never was offered one. But I wish I could have it. 

Oh I envy your red hair. Always wanted have one. And you know what I have ordered a new natural hair wig in red. Lol

I can totally understand how you feel about your hair. I lost my hair. And I can not stand looking at myself in front of my reflection so I wear wigs. I get up in the morning. Take a shower put my make up and my wig before I go to school with my girl. After 5 in the evening I wear scarf. I sleep in scarf. I can't imagine my husband seeing me without. That's just me. You can call your clinic and bake an appointment for wig fitting you need to pay 70£ For NHS wig it's synthetic. I didn't go for this option. I bought my first cheap wig on eBay. Looked amazing on. But was too long so the ends were getting funny and it looks a mess now. I bought my natural hair wig online and it will be delivered in 17 days. Can't wait. It is short one Bob style. I can't wait for it to arrive. As I can't stand my old one. 

I really hope you will get your answers regarding your treatment. I wish you all the best (Big hug)

Keep us posted

Member

Re: January 2019 chemo starters

Hi everyone 

Its so annoying that my yesterday's comment didn't appear in the chat. Don't know why. 

Just an update. I am 7 days post my second EC and feeling good. No nausea and energy is back. It was my daughter's 6st birthday so I have spent last 2-3 days driving around the shops buying wrapping paper and looking for a few more bits for her presents. Organised her cake to take to school and we celebrated yesterday by taking her out to trampoline jumping and pizza hut. Not much this year. Just don't really feel like it. 

But we had a great day and I eat too much.((

 

Member

Re: January 2019 chemo starters

Hi Sunnydaze

Thank-you so much for your good wishes. I know how difficult the hairloss is, I had it happen before to me with anemia years back. You sound like you are doing well though but I do believe hairloss is the toughest thing and I've cried today over mine which has been the worst day so far and I probably will again! I send you a big hug and I hope you get some enjoyment from tomorrow night - you really deserve it Smiley Happy xxx

Member

Re: January 2019 chemo starters

Hi WantOlive

Good to hear that you are ok and not feeling nauseous anymore. I am glad you have felt good enough to celebrate your daughter’s special day.😊 I see you come from Yorkshire, I am from Yorkshire originally too, but I live in Scotland now.

Lorraine.1 good luck with the se’s, I hope they are minimal.

Sparkie.2001 I hope you are now well and back home after your unwelcome visit to Casa NHS.

Helenbumblebee I hope you are feeling a little more positive and G, I hope you aren’t struggling with too many se’s.

If I haven’t mentioned you and you are  unfortunate enough to be on this crappy journey too,  I send you loads of healthy vibes x

I’m doing ok, I’m finding my hair loss difficult 🙁 it has pulled me down, more than I ever anticipated.

It’s my 50th Birthday next week, 2 days after my FEC#3. It can FEC off, I’m dreading this birthday. 50 and chemo and bald. Rock on 😓 I would have never in a million years wished this for my special birthday.

Anyway, I’m dragging the family off to Glasgow for a night tomorrow and try and salvage some kind of celebration Good food and shopping. A wee lo- key birthday treat before the crap that #chemo3 will bring. 

All the best chemoclubbers🤣

sunnydaze xxx

 

Member

Re: January 2019 chemo starters

LB2 and anyone else looking to have a wig cut  there is a website set up by Trevor Sorbie which will point you in the direction of a locally trained hairdresser who can style your wig. It's called "my new hair" here's a link

 

http://www.mynewhair.org/

 

I had a fringe cut into the synthetic one I bought at local hairdresser recommeded by the site. Hope this helps and imho from everything I've read it is worth continuing with the cold cap for faster regrowth. xx

 

 

Member

Re: January 2019 chemo starters

Hello everyone

 

I had my second chemo (EC) on Tuesday. I began to lose some hair this week, no warning sign at all of prickling etc as some of you had mentioned - it  just started coming out on Monday slowed for the next two days then a lot today!. No one could tell except me so just gotta keep on going. I have 2 more ECs left to do and I decided even if I lose the lot I'll keep cold capping through my next 4 paclitaxel as it seems to help with new regrowth. Just wondered if anyone else out there is doing same regimen as me ? (4 x ec 3 weeks apart, followed by 4 x pac 2 weeks apart) and has kept hair so far and/or shedding after session 2?

 

One tip I have to share is I also have found a tongue scraper really useful for keeping away the loss of taste buds which are located on our tongues! I'm using it regularly each day as well as brushing after eating. I hope maybe this is helpful to anyone losing taste buds on EC or FEC. I bought a stainless steel one on Ebay and Amazon sell them too. If you have a metalic taste in your mouth they come in plastic also.

 

Wantolive, i'm glad you're nausea-free Smiley Happy xx

Member

Re: January 2019 chemo starters

LB!

GOOD LUCK WITH CHEMO!! (HUGS)


Member

Re: January 2019 chemo starters

Hi girls

It's frosty morning here in Yorkshire

Hope you all ok. 

Iam 7th day post 2nd chemo and yesterday started feel much better today is good morning for me as no sickness anymore. It's my daughter's birthday today  she is 6. And I spent yesterday whole day driving getting her presents sorted cake for school and wrapping papers. 

I can see LB is nesting before her next chemo. I do the same before my chemo. And CRISPS with dippers are priority in my food cupboard)))))

I wish you all girls good nausea free day. Lol

Hope to hear how you all doing very soon. 

 

LB
Member

Re: January 2019 chemo starters

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.breastcancercare.org.uk%2Fabout-us%2Fnews-personal-...   I just read this and I thought it might be useful to all of us going through our chemo. I picked up a couple of tips. Whether i’ll remember though through my chemo fog 😊

Member

Re: January 2019 chemo starters

Hi Helenbumblebee

I used the cold cap back in 2012 when I had 3 x FEC and 3 x Docetaxel. I would estimate that I still probably lost a good 20% of my hair. I had a bald patch that I covered with a wide head band. At the end my hair looked pretty awful but for me it was worth it as I had a base for a short hair cut. I’d previously had long hair and knew that I wouldn’t be able to cope with no hair. I’m now using the cold cap again as it’s come back and I’m getting 8 x Docetaxel. But this time around I’ve invested in a decent wig so that I’ve got something nice to wear if I’m going out. Even though I’ve only lost a small amount of hair after two treatments I love the wig so much that I will wear it rather than style my own hair.  It’s very much a personal choice but I was very glad that I stuck with the cold cap as it meant that there was something to work with at the end. Good luck xx

LB2
Member

Re: January 2019 chemo starters

Good luck tomorrow Helen. The headband I have is an old one from a festival but the eBay one arrived today and it is good, very wide across the top to cover bald patch. If you search eBay for wide elastic headband bandana it should come up, I got mine from thoselittlethings76 and will be buying more. I looked in shops but they tend to be too narrow and with a twist on top which defeats the purpose we need them for.  Hope that helps, x

LB
Member

Re: January 2019 chemo starters

Well my second FEC went by okay. Getting used to the chemo brain woozy 🥴 again. I struggled with putting a ponytail band in my scarf 🧣😂

Helen good luck tomorrow and I hope you get some answers and advice.

Hugs to all 🤗
Linda
Member

Re: January 2019 chemo starters

Thank you so much everyone, today has felt like an easier day, and I'm in a slightly better place with the hair. I hate pulling out handfuls, and the bald patch which is growing on top, but it was less of a shock today. I've known all along that it was coming, and thought I was prepared, but I was shocked at how hard it me yesterday.
I've been for bloods today, and they're all good, so FEC2 is Thursday.
Kitkat18, thank you for your reassurance. I don't want to upset anyone with my decision but me husband reassured me it had to be my decision and about what's right for me, so I've brushed off a lot of what was said yesterday. I still think shaving will happen, I hate the prickling, burning, and it's floored me that it went from absolutely fine to sudden shedding everywhere at alarming speed in about 48 hours. I've asked more about the cold cap today will continue as my onc nurse confirmed it would grow back quicker with cold capping.
I've left a message for the BCN team, and should be getting a call, when I can ask more.

B74
You are very kind, especially when I was on such a downer. I just felt totally overwhelmed and can't believe how supportive everyone's being. I feel myself going to a pretty dark place every so often, but I've somehow pushed it away and kept going. I won't always be able to do that. I sobbed on the day of my first breast clinic appt when I had the mammogram, ultrasound and biopsy, but that was back in October. I've not lost it since then, but maybe I do need a good cry!!
Kip, thank you for so much support and information, you are quite amazing. I've collected some info on wigs today, and the place they recommend is about 3 minutes drove away! I've bought a pretty scarf and was planning to go to the Macmillan Centre at the hospital on Thursday to talk some more. I'm wearing a soft, woolly hat just now, but want some more lightweight ones as my attractive bald patch grows! I never feared the surgery or people's reactions post-op, but hair loss was the thing I feared most and, as you mentioned, being 'the cancer patient'. I'm talking to my boys, we've been honest with them from the start, and while my 4 year old has made me tear-up several times with fears I won't look like me/won't be pretty, he and his brother know I may 'buzz it away' and why, and we've spoken about wig shopping together too (although, I'm a bit worried about what I might end up with if their taste in Christmas decorations over the years is anything to go by!😆).
I'm hoping the BCN team will get back to me tomorrow - I couldn't get through today and had to leave a message - so I can talk things through some more, including prosthetics as, much as it's good to have my husband beside me, I think I need the detachment of a BCN right now. Thank you for making me take a breath and reminding me I can get answers, both from the BCNs but also people of here. It's good to feel understood, and reassuring that much of this is what we are all facing.
Sparkie2001 Thanks also, sadness is there for me too. It's funny how I was so sure I was ok with it all and prepared, but have been a mess nonetheless. I think maybe there's no way to prepare yourself really when it comes to holding a handful of your hair and not recognising your own reflection. I suspect shaving may ease my transition too. I went from very long to short before Christmas, in order to prepare myself, and it definitely helped.
LB2 I'm going to loom online after the boys have gone to bed tonight I think. I suspect I'll try a wig too at somr point, but the hair bands, hats and a sleep cap do appeal. Did you buy your band online or in a high street shop? I looked at some today but wondered if they'd be sufficient. They were quite pretty.

I feel I owe a great many hugs today for everyone who picked me up yesterday, thank you all so much for putting up with my 'woe-is-me' session.
Member

Re: January 2019 chemo starters

Hi Kip, I found your post to Helen very helpful, there's so many lovely ladies on here. I actually start my chemo on Monday 4th February it's such a dawntin time, I find myself reading all forums looking for answers but usually don't even know what the questions are, so thank you it was a good read, take care hope you're managing OK? Xx
LB2
Member

Re: January 2019 chemo starters

Oh Helen, hair loss is probably the worst part of this whole process. I am also cold capping and not sure if I will keep going. I have now had 2 FEC and have lost a lot of hair, I have a huge 6 inch bald patch on the top of my head. My solution is either woolly hat or cotton turban type hats you can get on line. I am also managing with a wide head band that is elasticacted at the back that hides my bald patch but you can still see the hair that is left, I have ordered another one on eBay. It is cooler to wear this indoors and looks "normal" for my teenage kids sake. I also have silk sleep cap that I sleep in to reduce the stress on the hair that is left. I expect I will lose more hair next week but if I can keep most of what I have left then I think I will keep going with the cold cap.

 

i did buy a wig for 70 quid with the NHS voucher but find it uncomfortable and hot to wear so far and need to get the fringe trimmed before I can wear it, maybe a job for this week, apparently you need to find a hairdresser that can cut synthetic wigs.

 

So do what feels right for you but I would put off the shave until you absolutely feel it is necessary, especially if you started with the cold cap. I have been pulling out handfuls of hair and you think you can't possibly have any left but there is still some hanging in there.

 

I read the forum every day, it is great to see everyone's experiences especially those who are a bit ahead of us and out the other side. Thanks for the moral support x

 

 

Member

Re: January 2019 chemo starters

I shaved all of my hair on the first day of treatment as I couldn’t work out how on earth I could wash it all with a PICC in situ. In retrospect I couldn have just got a waterproof cover for my arm! To be honest I just wanted as much of it gone as possible so when the time came there wouldn’t be as much to clear up and I could mentally ease the transition to bald. I am now moulting at a rapid pace and as soon as I break out of Casa NHS i’m going for the clippers again! It is getting everywhere.

I felt surprisingly okay when I shaved it all off but now it’s truly coming out I am really quite sad. I knew it was going to happen but now it’s here it’s just another step along the path of cack 😓


ktk
Member

Re: January 2019 chemo starters

I shaved all mine off after 15 days when it came out in more than a few strands. We did it at home. Scissors first then hubby ‘s electric shaver. It took ages but my avatar shows the results! Went to Y11 prom the next day. A bit of a shock for them!! Kx
Member

Re: January 2019 chemo starters

Did anyone shave their hair before it started falling out? I'm booked in to do it on Thursday, with second chemo still 8 days away xx
Kip
Member

Re: January 2019 chemo starters

Hello Helen,

Firstly don't ever apologise for having a downer and coming on here.  That is the joy of this forum, we all have those days, I am always posting when I am down, sometimes just writing it all down helps and there's always someone to pick you up and send a hug.   Let it all out.  

You are dealing with so much at the moment its no wonder your head is all over the place.   I hope I can offer some advice:

Hair - I would say this is probably one of the biggest issues to overcome with this whole process.  People will say "its only hair"... "it will grow back"  and yes it is and yes it does but when it starts to go... boy thats hard.  I found I suddenly looked like the "cancer patient" and that took a lot of getting used to.   You will do it when the time is ready for you, you may choose to carry on cold capping or you may not.. again as somebody said earlier.. .that is your choice and yours alone.. but ask questions, ring your nurse and ask about the cold cap, get some answers to help you decide.  The nurses are there to suppport you.  

Wigs:  At my hopsital I was given a huge amount of bumpf about all sorts of courses, wigs etc.  We also have a Macmillan shop/support area which gives advise and sells hats and bits and bobs.  The hospital supplied a voucher which entitled me to only have to pay the first £70 for a wig, I was given some names of places which accept these vouchers.  I got my wig before the hair went, some chose to wait, some ladies never want a wig and prefer hats or scarves, some don't wear anything.. its a very personal thing.   Again speak to your BCN about it.  I had a lovely wig and it looked great but I found I got used to wearing nothing around home (it was Summer though).  Go onto Ebay or Amazon and search for chemo hats, you will be suprised at the amount there is out there and cheap too.   They don't even have to be "chemo" hats, any hats are fine.  Perhaps ask you children to help you choose, bring them into the process too... although if they pick something horrendous.. you may have to wear it!!

Prosthesis:  I had a MX in May and am currently still wearing Knitted Knockers, they are great and free, look up their website.  I was advised to wait until after radiotherapy had finished before getting fitted for a prothestic boob, I have to ring my BCN and she will arrange a fitting.  Not sure I will wear it as I love my Knitted Knockers but I will get one, just to see.

Heart Scan:  I had a heart scan before chemo began and a bone scan, as someone mentioned, they are standard at some hospitals due to the type of chemo drugs you may be getting. 

It sounds like you have a lot of unanswered questions going round your head... write them down and call your Oncology Nurse (if you have one) or your BCN and tell her how you feel.  I have done, I was bothered that I didn't know the stage of my cancer, I know the grade but not the stage, and it became something I couldn't get out of my head.. I rang my BCN had a chat with her and she explained that not all hospitals tell you that and explained lots of other stuff about my diagnosis and she really put my mind at rest. 

ER+ :   I am the same as you HER- and ER+  I think I am 8/8 and it just means how responsive your tumour was to oestrogen, I think the higher the number the more response you get from taking oestrogen blockers (Tamoxifen etc).

Don't suffer alone Helen, call the hospital and ask those questions.

Unfortunatley this bloody roller coaster ride doesn't come with a guide book and there's no right or wrong way to deal with this... take care of yourself, be gentle with yourself, you've been through a lot.

Take care

Kip

x

 

B74
Member

Re: January 2019 chemo starters

Dear Helen, please don't apologise for bringing down a "positive" thread. We aren't and can't be positive all the time facing this horrendous situation, not just the hideousness of chemo but the whole cancer diagnosis and fears of what it means for the future. Personally I've had some really dark days (and nights), especially after this last chemo thinking about the very sick women I was in hospital with. The worries you have about your liver and brain will just be adding to your anxiety, so I hope they can sort out some answers soon. I haven't had any scans at all apart from the original mammogram/ultrasound and the worry of that does nag at me as well.

 

I think your friend's comment was unbelievably insensitive and idiotic. Unfortunately going through this makes you realise how little people understand (then again, I didn't understand before it happened to me either). It does make you value the small number who can really listen and get it, or who have already walked in the same shoes and can remind you there is an end. 

Member

Re: January 2019 chemo starters

Hi Helen, do you have a breast care nurse, that’s who gave me my wig voucher. I would ring her/him and share your concerns to help get you some answers and move things forward. I found the first cycle to be the worst because there is so much unknown, but you get into a pattern and learn how to manage the side effects. The hair stuff is scary but it’s job is to grow and it will come back. Cold capping and/or braving the shave is your decision, do what feels right for you, not others and go easy on yourself. It is a scary time and I’m sorry you feel so low. Sending hugs

Member

Re: January 2019 chemo starters

LB thank you. I'll ask more questions tomorrow. It's so odd that I got up and felt bright and perky, unphased, and now, at the other end of the day, just overwhelmed and lost.

My friend messaged me this morning and asked how I was, so I said I was dreading Thursday arriving again, but feeling like me and I must be being totally oversensitive as her reply of "You're lucky, chemo can be A LOT worse" just made me want to scream. Am I being really self-obsessed? I genuinely felt good today, until I binned piles and piles of my hair.
Sorry everyone, I'm bringing down what's such a positive thread from so many strong women.
LB
Member

Re: January 2019 chemo starters

P.s. helenbumblebee I got some pretied scarves from a company called hats4heads -they’re very useful for just pulling on over what’s left of my stubble. Or if you have any wide long scarves- I folded them in half longways, put over my head then used a ponytail band to tie at the back - like you would do a loose bun with your hair. X
LB
Member

Re: January 2019 chemo starters

Hi sunnydaze thankyou 🤗
LB
Member

Re: January 2019 chemo starters

Hi Helenbumblebee my hospital hairdresser arranged my wigs so you could ask them to arrange an appointment with their hairdresser. Have you heard of knittedknockersuk- they are a wonderful charity that arranges volunteers to knit you a knocker - others on here have said how brilliant they are compared to what’s on offer from the hospital. I’m having surgery after my chemo and I ordered mine - it arrived a couple of days ago. I had a heart scan just before starting chemo I understand that some of the drugs can be harmful to the heart. I asked my oncologist to show me my breast scans - like you I wanted to see the beast. I’m hoping that you can get some more assistance with explanations and help with arranging your wigs - we are allowed 2 a year at a discounted price. Hugs 🤗
Member

Re: January 2019 chemo starters

Sigh!!!!
I keep finding I need to retreat for a day or 2, and when I get back on here, there's so much to read that I never get through it all and feel like I'm missing important tips etc.
Some days are ok, but today has been hard with my hair just coming out in handfuls. I now have a very wide, bald line, with thin patches either side, rather than a parting.
I've had very long, very thick red hair since childhood so, at 41, it's been like killing a huge part of my identity having it cut before Christmas, although fonating it felt good, but I really felt like I needed to get used to seeing less in the mirror. Part of me thought today that I should just get on and shave it off, rather than prolong the inevitable, but my mum cried and said no, it was too soon and unfair on my boys (4 and 7), and my mother-in-law said I need to sit it out for a couple of months or, even better, wait until after chemo has ended.
I have no wig, no idea where to get one, no idea where I get the 'voucher' I overheard reference to at FEC1. Should I have that sorted first to soften the blow? And, with snow forecast, my loose-knit hat isn't going to help a bald head stay warm for long. Should I be fetting something lightweight to wear underneath? Can you get soft, stretchy hats anywhere, which coold be worn indoors of out?
I've only done the first FEC out if 3 (then 3 x Docetaxyl), with the 2nd on Thursday if bloods are ok tomorrow. I cold capped and now wonder, with this much loss in the last 48hrs after just 1 treatment, if I shoulc still have it on Thursday or not bother. I just don't understand the benefits enough and I've found my head is a mess since treatment started. I'm forgetful, disorganised and easily confused. Will it help it to grow back at thend of chemo if I continue with it?
I have radiotherapy after chemo, and 10 years of hormone treatment, and I know I'm HER2- and ER+, but had no idea there was a scale for measuring the degree of responsivity. Is it out of 8? Can I find out tomorrow when I get blood results? And what are the implications of an 8/8 score, compared to a 2/8 for e.g? Does the score dictate or link to the chances of reoccurrance?
I want to see my scans to see the beast I'm facing, although I had a mastectomy and axillary clearance, so presumably I'm just on damage limitation and cleaning out now, but it's never been offered. I had a CT, which highlighted 2 tumours in my liver. I had an MRI, which suggested one is almost certainly a haemangioma, but that the 2nd is less characteristic of one. I asked if it will be monitored when I saw he Onc at FEC 1, and he just "yes, probably", which didn't alleviate my fears at all. I also have some off symptoms, which can be linked to a brain tumour (amongst other things), so I should be having a head CT at some point to check. There's also been talk of genetic testing due to a very strong paternal history of prostate cancer, but I've just been tomd it will be done routinely 'in due course'. I know I have to focus on getting througb treatment at this stage, but that answer just leaves me hanging, not least of all because I just want my second breast removed. I have a brother and a sister, and 2 little boys, and I need to understand what this means for them.
Can I ask why people are having heart scans? Maybe there's a very clear answer on herd that I've missed but I can't always come on here and open up.
And when will I ever be seen for a proper prosthetic? I wore my comfies on and off after surgery (3 months ago), but they irritated when they moved and, while I'm not phased going out without my "boob disguise" (my 2 sons' term for it), and breast loss hasn't bothered me at all - least of my worries right now, tbh - I just wonder when that bit happens normally.
FEC 2 looms on Thursday, with PICC assessment on Friday and, potentially insertion on Monday. I've tried and tried to move the latter 2 as FEC1 wiped me out, but to no avail.
I'm so sorry for such a long message, I feel so overwhelmed by my thoughts and what's happening with my hair, but also by how much there is to take in on here.
Member

Re: January 2019 chemo starters

Good luck for tomorrow Bluetit and everyone else having treatment tomorrow.  Will be thinking of you xx

Member

Re: January 2019 chemo starters

Good luck LB. I hope your second chemo goes well. Xx
LB
Member

Re: January 2019 chemo starters

Hi all I hope all those just coming out of their chemo haze have a good couple of weeks and that those, like me, who are going for their next (or first) don’t have too bad a time of it. I hope that the side effects are about the same this time around as I know now I can cope. The real bad one for me was constipation and they have prescribed Movicol which I think must be stronger than what I took last time 😀🤞 I have a cupboard full of salty crackers and spicy crisps for those munchy moments and some tasty meals and lollies in the freezer 😀 good luck and hugs to all 🤗