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May 2017 chemo starters

Maryann
Member

Re: May 2017 chemo starters

Hi everyone hope you are all well 😊 I'm still waiting to find out what chemo I will be getting but just keep thinking (and fretting) about the hair loss, I'm guessing I probably will lose my hair so thinking of going and getting it cut short just now πŸ€” suppose it's just something for me to control.

My son used to have night terrors when he was younger, so horrible to watch, he did finally just "grow out of them" hope same happens with your little ones ❀ xx
AliOG
Member

Re: May 2017 chemo starters

Morning everyone,

 

Thanks so much for the tips about getting a wig and also for the hilarious stories of wig malfunctions! It's great to know that having chemo doesn't give you a complete sense of humour bypass. 

 

Katie11, in answer to your question I'm having EC. The onc said I might not lose eyebrows and "other" hair (cough cough) but definitely head hair. I've got very fair eyebrows anyway and have to dye them all the time so I've always wanted them microblading. Will probably just wait till it's over.

 

MJK, I'm going to google pixie cut wigs now. I'm sure I'll look like a drag queen in a wig but I'm prepared to give it a go, even just for comedy value!

 

Thanks for all the advice everyone and good luck today if any of you are having treatment. The weather looks great for the weekend so I hope you can all enjoy it xx

MJK
Member

Re: May 2017 chemo starters

Especially as it's sung by furry chipmunks! 🐿🐿🐿🐿
Mai7
Member

Re: May 2017 chemo starters

Morning everyone and hope you are all doing well! β˜€οΈ

 

MJK, I will never be able to listen to that song again without thinking about holding onto my wig in the supermarket carpark! πŸ˜‚

MJK
Member

Re: May 2017 chemo starters

Another song for your play list Mai7 'Hold on tight to your dreams' (originally ELO but covered by Alvin and the chipmunks). πŸ˜€ Well done Trisha, sounds a long day I hope you got some sleep. Drinking lots of water is great but meant loo stops half the night... Fuzzy headed again. X
Mai7
Member

Re: May 2017 chemo starters

Treehouse, I missed an opportunity to go all out on the guilt front. I could have made him feel really bad, I mean I wouldn't have been lying, it's all true!

 

well done Trisha, you're braver than me with the naked head! I'm keeping well hidden behind Lola!

treehouse
Member

Re: May 2017 chemo starters

Good to hear from you Trisha. Glad round 2 went well. Brave girl going bald in Tesco. Did you get any reactions/ comments? I will go out in a scarf tomorrow for the first time.
treehouse
Member

Re: May 2017 chemo starters

Lol. That's funny Mai. I think you should have taken it off and confronted him bald. He would have felt terrible colliding with a chemo patient πŸ˜‰
Is that mean? Oh chemo brings out the worst in me he he 😁
Trisha69
Member

Re: May 2017 chemo starters

FEC no 2 done!

Wasa long day tho,left at 12 , home at 8.  Had see Oncolgist first then the treatment.  Braved Tesco with my bald head, too hot to wear anything on it.  The Doctor presribed Menthol in Aqueous cream for my scalp. 

Keep strong ladies! xx

Mai7
Member

Re: May 2017 chemo starters

Just had a funny afterthought. Although I've named my wig Lola, the manufacturer name is "Dream" so I'm thinking "hold on tight to your dream"......... πŸ˜‚πŸ˜‚

Mai7
Member

Re: May 2017 chemo starters

Treehouse, your shopping trip sounded wonderful and hilarious! So Ashley dusted the floor in the changing rooms whilst you tried on dresses? Teamwork!

 

I was siting in the supermarket carpark tonight whilst partner did some grocery shopping (day 8 so high risk for germs) and whilst I was sitting there I felt the car move. Someone had reversed into it and then parked up next to it. I got out and it was so windy I held on tight to Lola like a 1960s beehive. When the guy got out of his car he didn't even know he'd reversed into it. I pointed out the scuff mark on the bumper and that it was the same shade of blue as his car. He apologised and I told him to be more careful in future. The whole time I'm holding on tight to Lola as its very windy and I didn't want to have to chase Lola across the carpark and explain to the guy why I look like an escaped convict! .....the situations you find yourself in! πŸ˜‚

 

Katie, I'm not taking any supplements at present other than B complex (as I don't eat meat). I plan to wait until chemo finishes to take supplements. I'll take collagen and glucosamine and I've been researching some other stuff which I've added to a list on Amazon. I'll post this list later and we can compare notes.

treehouse
Member

Re: May 2017 chemo starters

Hi AliOG. I did not cold cap as I hate the cold and my treatment already takes forever so I could not face it. Ashley (my wig) is also short. I push bits of hair forwards and back so my ears poke through like my own hairstyle did. I love my wig and my kids prefers me to wear it for the school run. I am bald or in scarfs at home. Hair seems to have stopped shedding but not much left to go.

I have appointments tomorrow, bloods at gp in morning and onc in afternoon at hospital. Fingers crossed I am good to go for round 3 on Monday. I feel great.

How did round 2. Go MJK?
MJK
Member

Re: May 2017 chemo starters

AliOG my wig (aka Tribble) is a pixie crop that tapers around the ears. It's worth getting one so you have the option. Treehouse it sounds like a fun day although not as intended. It sounds like Ashley has a mind of his/ her own. 😁
treehouse
Member

Re: May 2017 chemo starters

Had a lovely day dress πŸ‘— shopping 🏬 for a wedding πŸ’’ with a friend who is recovering from a stroke. Then had lunch by the river. Top tip! Don't go dress shopping wearing a wig 😁. Ashley flew across the changing room more than once as I was taking clothes on and off. I was picking off fluff and rearranging it everytime I came out to show clothes. And it got major static frizz. I found the whole experience hilarious and my friend got a shock when she cane to help a baldy with s zip. Needless to say i came away with nothing. I am useless at shopping! 😁
katie11
Member

Re: May 2017 chemo starters

Yeah you get a NHS voucher for a wig and you can add to it to get a better one.

I only had microblading done bout 10 days before. You may not lose your eyebrows? What cocktail are you being given? I've just had my x3 EC x
AliOG
Member

Re: May 2017 chemo starters

A free wig?? Is that actually a thing? I never knew! To be honest I hadn't even considered a wig. I've had short hair for so long that I'd feel weird with anything that even covers my ears. I think I'll stick to hats and headscarves. I kind of like that look anyway.

 

I did think of microblading my eyebrows but the doc said eyebrows wouldn't go. Maybe he was fibbing! Do you happen to know how long you have to leave it between having them done and starting chemo? I might not have time to fit it in now....

 

More research tomorrow! 

 

X

katie11
Member

Re: May 2017 chemo starters

Thanks MJK x
MJK
Member

Re: May 2017 chemo starters

My son is 4 and still gets them sometimes especially if he's over tired.
MJK
Member

Re: May 2017 chemo starters

Hi Katie, it's a lot for an 8 year old to cope with. This may sound odd but, if you get the chance, get a box of lego (random works better than a kit) or similar out after tea. Play together and get him to talk about what he's building he may well start talking about what's worrying him. Expressing his worries helps him work through them and to feel your support. Leave time to unwind before bedtime and he may sleep better. X
katie11
Member

Re: May 2017 chemo starters

Has anyone asked if/ when we can start taking supplements for hair / nail growth? I forgot to ask yesterday? Do you think it's like all supplements and best to wait? X
katie11
Member

Re: May 2017 chemo starters

Also go and sort your wig before you start . It's easier to match to your hair colour and you won't feel as stressed when it does start coming out x
katie11
Member

Re: May 2017 chemo starters

Well done MJK xx

Those sleep terrors are bizarre! He gets up with his and runs round. Did your son just grow out of them? My son is 8 and it seems to be anxiety that does it. Think he's upset at all terrorism stuff at the minute so it's been really frequent. Would take him to doctors but not sure what they could do?

AliOG have you considered having your eyebrows mircobladed? You have to have it done before you start chemo though? I had mine done and love them x
MJK
Member

Re: May 2017 chemo starters

Sounds good Ali, you will probably get a free wig but in this heat the headscarf is easier. I enjoyed picking a selection from Buff so I can colour coordinate. X
AliOG
Member

Re: May 2017 chemo starters

I've already ordered myself a headscarf and I'm about to order myself a rather nice hand made chemo hat off Etsy. It's the only bit of this ordeal that I can get any enjoyment out of. My friends are doing their best to send me pictures of outrageous turbans with pineapples etc. stuck on top of them and daring me to go to Tescos in it! x

MJK
Member

Re: May 2017 chemo starters

Round 2 done. I don't cold cap as with stage 3 I wanted it to get everywhere. That said when the air conditioning wasn't working properly today it might have been quite pleasant... I have a fine fuzz on my head. Onc said that eye brows and lashes are the last to go. Big sympathy with the night terrors Katie, my lad gets them and they're bizarre and distressing. Even though he's asleep (while sitting up screaming and thrashing) I find talking to him settles him down after a few minutes. X
Mai7
Member

Re: May 2017 chemo starters

Alice, this is one place where stalking is encouraged for very good reason! It's acceptable, healthy stalking.

 

yes, I agree Rosie, I really do admire those of you with young children. You are real heroes to cope with all of this and keep little ones happy. πŸ’ͺ🏼 πŸ…πŸ…

AliOG
Member

Re: May 2017 chemo starters

Thanks so much for all of those responses. I'll see what they say when I go round the ward and try it on but the more I think about it, the more I don't think I can be bothered with it. We'll see. I am having my hair cut next week by a woman who is the same age as me (46) and has been cutting my for about 7 years. We have daughters the same age and we're pretty close now. I spend more time in that salon than I do with my best friends! She has been great and is going to give me a shorter cut on Tuesday. I'm hoping for Annie Lennox circa 1982 but will probably look more like Prisoner Cell Block H! Anyway, thanks for all the comments. It really does help. I've been keeping a bit of an eye on your conversation (sorry if that sounds like stalking) because I'm due to start at the end of June and it's useful to know what you ladies have gone through so far. 

 

I'll keep you posted on the cold cap front but my chilly bones are already quaking at the thought of it! 

 

Alice x

Rosie65
Member

Re: May 2017 chemo starters

Hi Alice, I cold capped for the first two treatments and still have a very thin, very short blonde bob so maybe it helped a bit. It's quite fluffy, like baby hair and since round 3 (where I didn't cold cap) not much more has come out.The cold cap has to be worn half an hour before treatment and 2 hours after so prolongs treatment time. The cold didn't bother me ( it's prob better in the summer) but cap is heavy and gave me a headache. To be honest although I have some hair you can't do anything with it  and like Katie when it was coming out I found it really annoying and was glad to get it cut and start wearing a wig as it made me feel more like me.

 

Have lost leg hair and under armpits is thinning so that's a benefit. Ha ha - no border strimming for me either.

Eyelashes and eyebrows are hanging on too - I really don't want those to go.

 

Katie - must be tough when you get sleepless nights on top of everything else.  I admire all you ladies with young children to look after, it can't be easy, at least my daughter can look after herself!

Mai7
Member

Re: May 2017 chemo starters

Hi Alice, I cold capped on my first chemo. If I'm honest, it's too little gain for too much pain. Its 10 minutes of agony (brain freeze from hell, heats up central core and makes you feel sick and agitated). After 10 minutes your head goes numb so it's fine. I was still shedding hair at a fair old pace on day 18 so didn't feel it had accomplished much and didn't bother with it again. I think, it's just hair and the baldness is temporary and it will grow back. Another thing to consider which gets a bit of noise on the internet is the tiny risk of scalp metasteses.  In the end I decided I wanted the chemo to get into EVERY cell in my body. If I'm in, I'm all in.

 

hope this helps. Xx

katie11
Member

Re: May 2017 chemo starters

Hi AliOG, I didn't bother in the end. All the way up until I went for a tour I wanted the cold cap. When I went around ward and chat with nurses she let me try it on and I really didn't like it. When I weighed up pros (not many) I decided not too. The drugs I had for first 3 cycles are very unforgiving on the hair and I move to weeklys next so cant use it then anyway so I was just prolonging the inevitable. Maybe ask to try it on and see how you feel and decide how important keeping your hair maybe a bit longer is? Ask your nurse how long it will add to your treatment too. It's quite surprising how quickly you want rid of you hair when it starts coming out its really annoying more than anything.

Keep us updated xx
AnnieA
Member

Re: May 2017 chemo starters

Hi Alice, I have had two rounds of EC I did the cold cap both times. It's bareable. The first 5 to 10 mins you have to grit your teeth and get into abit of a zone but after that it just feels numb.
I was also terrified of loosing my hair, I felt if I did do the cold cap at least I was trying and it gave me abit more control!
However it hasn't worked for me and I have had to shave my head after the second session. It does work for some and not for others.
Good luck
Annie x
AliOG
Member

Re: May 2017 chemo starters

Hello ladies,

 

Just gate crashing your conversation here but I'm about to start chemo at the end of June and wondering whether or not to go through the faff of cold capping. I suffer terribly from the cold so it really doesn't sound appealing. I've got pretty short hair already and am having it cut shorter on Tuesday. How many of you bothered with it, persevered with it or gave up on it? Terrified of hair loss but thinking I'll probably have other things to worry about when I get going. Any advice gratefully received.

 

Alice

katie11
Member

Re: May 2017 chemo starters

Borders to strim !!!! Lol x
Mai7
Member

Re: May 2017 chemo starters

I have a thin covering of hair all over, except for on top which is more like bald with a bit of peach fuzz! My hair is quite dark so any hair shows more but if you're fair then it will show less (wow, I feel like I just stated the obvious there!) The leg hair is still hanging on tight but thinner than normal as is the lady garden (but no borders to strim now). Armpit hair seems to have vanished. No sign of any thinning to my eyebrows or lashes. I stopped wearing mascara when I started chemo so I didn't have to pull on the lashes to remove it. I just wear a bit of brown eyeshadow and liquid liner along the edge of the upper lid.

treehouse
Member

Re: May 2017 chemo starters

Hi. I sound the same as you busybee. Fluff all over with visible shiny scalp . Eye brows still normal. Have not needed to shave underarms for days and leg hair grows slowly. There are some benefit πŸ˜‰
busybeeS
Member

Re: May 2017 chemo starters

Hi Katie. I'm doing ok today thanks. Face is a bit flushed but it's keeping me warm, so I don't mind. 😢 you sound like you've kept a bit of your hair in patches. Mines fallen out pretty much evenly all over, with just a bit of fluff left over.
Does anyone know when the eyebrows and eye lashes fall out? I keep having a bit of a tug at mine but there doesn't appear to be any loose ones.
katie11
Member

Re: May 2017 chemo starters

Good luck MJK.

Feeling OK morning after round 3 . Just tired from steriods and my eldest son suffers from sleep terrors which aren't normally this bad but it's been every night now for 10 nights!!!!

How you feeling today busybee?

If you dont mind me asking Mai7 hows your hair holding up after round 3? Just wondering if I will be bald and bright white this time or continue as a patchy white hatchimal!

Keep smiling ladies xx
treehouse
Member

Re: May 2017 chemo starters

Good luck today MJK. 😁
Anniej
Community Champion

Re: May 2017 chemo starters

Wolfee , quite right re green tea. It's a bit of a no no on the nutrition info while going through chemo. Check the aromatise inhibitors downloadable leaflet on this site. X

MJK
Member

Re: May 2017 chemo starters

I find green tea with lemon or jasmine easier. I generally love mushrooms but can't eat them when I have nausea. Green tea is fine with chemotherapy drugs as is the AHCC supplement that I take. I checked both fairly thoroughly before starting. I'm on the 7 injections with FEC. X
katie11
Member

Re: May 2017 chemo starters

Evening ladies, feeling OK after round 3. My last EC and week of injections woo hoo! I can't quite see it as half way yet. I start weekly paciltaxol x9 on 5th July so still feels long way although will work out the same as every 3 weeks! Just wondering how new drug will affect me . Chemo nurse reassures me weekly is easier and she would definitely take that over same drug every 3 weeks so we will see!!!!

I stopped taking supplements during chemo too as I heard it can interact with drugs too. I also don't like green tea Mary so i took it as a supplement.

Good.luck for tomorrow MJK xx
Mai7
Member

Re: May 2017 chemo starters

Well done Katie and BusybeeS and hope you are doing well. ❀️

 

MJK, best wishes for tomorrow. Is the green tea still ok 3 times a day during chemo? And don't forget the mushrooms, the Shiitake and Oyster and Portobello. Immune boosting and cancer fighting.

WolfEE
Member

Re: May 2017 chemo starters

So green tea. It's brilliant stuff so good for you and can fight cancer.
However, and please don't quote me because this has not been given via doctor etc only google search so can't be sure.
Some people say drink lots of green tea prior to treatment and after but not during. It's possible that it can hinder the drugs???
I didn't know what to do so just incase I have temp replaced my green tea with peppermint and ginger (although more often than not hot chocolate these days)
It's so hard knowing what is fiction or fact so much conflicting information out there. When I ask my doctors for advice they just tell me eveytbing and anything in moderation they don't like to commit or or comment.
busybeeS
Member

Re: May 2017 chemo starters

Hi tree house. I had a lumpectomy before surgery, so chemo is just to make sure it's mopped up any strays. Followed by 23 radiotherapy sessions. If there's anything left after that I'll be well miffed. πŸ˜…
MJK it is good to be at this point. Have the 3 week recovery then it's def 1/2 way through. I was told by nurse today that there's nothing you can do in terms of food or rest/exercise for the white blood cells. It's just time - to let the body build them back up or injections. As I'm on 6 FEC they don't give injections unless it results in a big delay in giving next treatment.
Maryann - welcome to the group. Hopefully you'll find the posts helpful and supportive. I dont post too often but i do check in daily and I wouldn't do without it now.
Big hugs to everyone. xx
Maryann
Member

Re: May 2017 chemo starters

Thanks Mary, will definitely do that although I have tried green tea and didn't like it, need to acquire the taste now, I drink far too much regular tea!! Xx
MJK
Member

Re: May 2017 chemo starters

Good to hear your blood count picked up and you could have FEC 3. It's scary how much the white blood cell count drops. I'll have to take it quietly over the next cycle. Glad you found us Mary Ann. I'm a Mary too. A few food tips are green tea 3 times a day, lots of broccoli and cabbage and enjoy all the raspberries and strawberries as all of these are have cancer fighting stuff in them. Even better, chocolate is good for you (so long as it's 70% or more cocoa). X
Maryann
Member

Re: May 2017 chemo starters

Hee hee when I was reading about the lady garden I thought right away, these are my kind of people πŸ˜‚

So glad you are all coping and being positive, so glad I found yous I honestly feel better about dealing with this after the read 😊 I'll keep popping in to see how you are all doing and let you know who I get on
Sending strength and love ❀ xx
treehouse
Member

Re: May 2017 chemo starters

Great news busybee. That must feel amazing knowing you are well on the way. Have they monitored lump?
Rosie65
Member

Re: May 2017 chemo starters

Hi MaryAnn glad you found us. I found the time after diagnosis difficult mentally. As you say worrying that the lump would grow - it didn't!  Once you get your treatment plan you feel more in control and once treatment starts you feel better knowing you're actually doing something to get rid of it.  I read the posts for a while before I joined in and I'm so glad I did, it's been an invaluable support.

 

I've got my genetic result, I'm BRACA 1 but at least they can target the chemo now to treat it and other family members can do something so they don't have to go through all this if they've got the gene.  It's worth chasing it up as I rang on the off chance to see if the result was there and they gave it to me over the phone.

busybeeS
Member

Re: May 2017 chemo starters

Hello everyone, just had 3rd round of FEC today (weeks are flying by). Bloods done yesterday WBC and neutrophils came back low, so had to wait while they did another blood test today. Came back as ok - so treatment went ahead. Isn't the body amazing how it can regenerate itself! Oh, and the hospital and staff - they're amazing as well!
Half way through now Katie11.