I lost all of my ability to produce natural oils with my first FEC. It stopped over night. My hair (which was fine but lots of it) promptly turned into a huge dry mass of knotted hair. Like a brillo pad.
I'm cold capping.
My experience was that due to the loss of natural oils it was best not to wash my hair. The first time I did it my hair was so damaged.
Other people are putting oil on their hair and doing all sorts of things. I started putting oil on my hair but it was too late by then to get rid of the matted dry mess.
It could depend on if your scalp is getting oily in the normal way or not?
First time on this thread so hello everyone!
I had my second FEC treatment a week ago and am 'enjoying' the usual hair loss, though I am cold capping in a desperate attempt to keep some of it. I've decided that I don't want to really see what's going on with my hair so I'm keeping it covered all the time - so I'm behaving as if it's all gone and then, at the end of the treatment, if there is some left then it's a bonus.
My question is, does anyone know if it matters if I don't wash my hair? I keep reading things which say that it's OK to wash your hair once or twice a week and it won't make a difference, but I can't find anything that talks about not washing it at all! Common sense makes me think that it must be OK, and in fact that building up the natural oils should be beneficial for my scalp, but I wondered whether anyone had had any advice about this?
I've not been doing hugging at all! Social media dunce. Should get a T-shirt.
Thanks Belle, that's made me a lot more positive going in this afternoon. Also I checked the actual reference from the website, and the conclusion is "Fenugreek, known for its hypoglycemic, anti-inflammatory and immunomodulatory activity, may be a promising protective medicinal herb for consideration in complementary therapy in cancer patients under chemotherapeutic interventions."
So not negative at all? Confused. But will proceed to eat my mango pickle tomorrow afternoon - looking forward.
Apologies if I seem a bit crazy, but realise Ivr been hugging and replying to posts from about 10 days ago. When I click on our group it sends me to page 5 etc instead of the latest postings! 🤓
That's interesting RosieFlower about the stages of loss and growth.
Mt loss was last weekend days 15 (night) and next day so got my Tuppenny All Off on Sunsay (day 17).
I have 2nd FEC on Friday too. X
Don't panic yet Julia! All is not lost! Turmeric supplements are generally huge quantities of the spice - I read up on it a while ago and the amount of turmeric you'd have to add to your diet to get the same effect from the recommended daily allowance of the supplement was vast and just not possible. So curries are still on the menu - hurrah! Not sure about fenugreek as a supplement but I'd put money on it being in the same league. Otherwise, we'd all just add a sprinkle to our food, wouldn't we, and there'd be no need for a supplement.
Hope that helps,
ps - I agree, that website is fabulous. Of the four supplements I was taking I discovered one interacted with the chemo drugs and the other three interacted with one of my routine meds and all of them could cause diarrhoea which I was suffering really badly from!
Gosh, Belle, that herbal supplement interaction website is an extraordinary resource!
Here's what I found: cranberry & valerian are fine (in my case), but searching for the chemo drug name, it turns out fenugreek and turmeric are counterindicated with cyclophosphamide! How incredibly depressing: indian food and mango pickle are my go-to comfort foods. They seem to be ok with Docetaxel = Taxotere, so might be better with 2nd half of chemo. Oog. Need to rethink my food choices, so depressing.
thanks for tips re: herbal supplements - you're right that they are not innocuous at all and I will check there from now on. Thanks for the link. Hope the yoga goes well.
I had a full period right after the first chemo, very bloody tiring (excuse the pun). My husband's helpful comment: "I thought you were supposed to be in menopause now!" as though I was Doing It Wrong, somehow. I'm due my next one next week, so let's see if it bothers to show up. If you get weird spotting, though, could be nothing or could be an infection or god knows, so best to ask doctors?
I am getting the injections already, no idea why since my oncologist prescribed them without telling me - just got them as "here you go, take these" on way out from first chemo? But my previously reasonably great immune system never prevented me from getting localised things like UTIs or thrush, so would rather be safe than sorry and prevent them specifically.
Ok off to bed to get good rest before tomorrow: in morning, "make a bear" at child's new school, then chemo in the afternoon? That'll be a contrast for sure ...
had second TC chemo last Thursday July 7 and doing a lot better this time. 2 sessions down - 2 to go. Better nausea control with Ondansetron but seem to be more tired than last time. Spent Sunday in bed. Picc line much easier than cannula. Lovely district nurse coming every week to dress it and also to give me white blood cell boost injection day after chemo. So far no joint pain but lovely breast care nurse said take ibuprofen after injection as once joint pain sets in it is difficult to make better. Mouth very sore but pineapple juice and fresh pineapple are soothing it.
Could not manage cold cap this time as too painful. Nurse said second time is often worse. Hair thinning but not coming out in clumps so have not worn wig yet.
I have bought suburban turban hat with peak which friends think look great as I did not like the thought of my wig blowing off when walking my dogs on windy beach.
Really pleased to read all the hints and tips on this forum which make chemo bit more bearable. Radiotherapy late August so now reading hints about that.
Hi Julia S
It is great to hear that you are getting on so well with things.
Have you told your oncoligist that you suffer from UTIs?
When I told mine - I got the immune system boosting G csf injections prescribed.But you may, of course, already have them.
So far so good! - No UTIs - no thrush - nothing health challenging to report. And although Chemo 3 initially floored me - by day 7 post chemo - I was ok again....still a little fatigued, but otherwise absolutely fine.
Great wig! Probably best not carry the gun with you though, however much like Nikita you look 😄
Joining the hippy dippy club, I'm signing up to a weekly yoga class at my local cancer support centre. I'm looking forward to something that involves some gentle stretching as my LD flap recon has left me stiff and I could do with more flexibility.
One of the BCC nurses posted this link https://www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine/herbs to check out supplements which I found really helpful. I'm sure you's are fine but I discovered the ones I was taking interacted with some of my routine meds - not a great idea!
Hope tomorrow goes well,
That sounds familiar - I have had and to a degree still have exactly the same problem. Mind you - with me it is the upper arm, too.
Someone, sorry cannot remember the name - on the forum suggested to try Hirudoid cream, which you can get over the counter.
AND - it works for me - still a little pain, but have not been applying it as much as I should have done.
Work is getting in the way, lol.
am having 2nd chemo tomorrow (EC), and planning to bring gloves, leg warmers (for arms), for better canulla-sation, blankets and do my own hairwetting & conditioner for keeping on with the cold cap. Because indeed the first chemo cold cap didn't really work (I think it was too big - I didn't have much cold pain at all). My hair's been shedding a lot since Saturday, but not as bad as my "garden" (thanks Belle!) which is basically all gone. I'm wearing lots of hats & scarves, and on special occasions my Millie wig in "dark chocolate" http://dimpleshair.com/?product=millie , which actually looks way better than any of my hairstyles ever has. I like to think I look like Nikita in the original Luc Besson movie: http://images.static-bluray.com/movies/covers/1798_front.jpg
Other things: I'm still doing the 4 day fasting with chocolate around the chemo time, and have suffered not many side effects at all (obviously totally anecdotal).
In terms of other things, I've been taking some cranberry extract pills to prevent UTIs (if anyone gets them, I do), which seem to be working, and also sometimes Valerian to sleep, ditto. Way back in the thread we discussed thrush, which I've been getting basically every other month since my son was born 4 years ago: no fun at all, and a lot bigger risk with low immune system on chemo. The Sylk product http://sylk.co.uk/ has been working great for me: no hint of thrush when I know I would have had it before. So that's actually a benefit from chemo: that I had to look into finding a solution for a previously horrid health problem! Silver linings. Other more hippy-dippy stuff: I've started meditation at my local "modern buddhism" centre (thanks Chorlton!!!) a couple of times a week, and it's just great. Lovely peaceful time when I have permission not to think about all this crap anymore.
I'll let you know how tomorrow goes - can't say I'm looking forward to it, but I am looking forward to better odds of living a bit longer! Very grateful for NHS and Christie here in Manchester.
Thanks Rosie & Anon,
I'm 14 days post second FEC now but did all of these things prior to both sessions. My unit routinely use heated pads prior to cannulation and then throughout admin so my arm was beautifully warm and toasty. I drink more than 2 litres a day normally so up that to between 3 & 4 litres pre chemo. Not sure what else I can do really. I get the impressionthe soreness I'm experiencing isn't acute, it's more like chronic damage 😞
How's everyone doing? I'm feeling much more me like now after my second FEC so planning to enjoy it as much as poss before number 3 beckons.
Is anyone else beginning to have any trouble with their veins? I've had both doses through a normal cannula rather than a picc or hickman line and for past few days I've noticed my arm is tender from my wrist up to mid arm. It's not swollen and there's no tracking or anything like that but I fear it doesn't bode well for the future.
For those of you with PICC lines - what do you have covering the insertion site? I have a problem with allergies to dressings 😕
Sue, those head styles look great on you!
I'm quite short so don't know how they will do... I did do a trying on in M&S 2 weeks ago - awful, lol!
But yesterday after turning into Sean the Sheep, I tried on my summer hats ..
Which do you think .... ?
Thanks Rosieflower, Prossecco was lush x Hope you all managed to enjoy somehing to make you feel better too xx
Feel very strange today! not sure if it's the Taxotere trying to rear it's ugly head or what - and am now starting to worry about coming off the steriods today incase i flare up:-/ Just want to get the next one over with to see if I can carry on with it! Oncologist said they would be stuck to find a suitable treatment if this doesn't work, even after the mastectomy and the radiotherapy - Bloody lymph nodes!!!!!!
Decided to get stuck into our 'builidng project' which starts soon - How are you managing Bottyhoo? Are you managing to get the rest you need? x
Wishing you all a good week - big hugs x
I wonder whether this might work for you.
This is a hat, which should still, just about, be available at Marks and Spencer. It also came in a natural straw colour. Perhaps look at M & S online? and order from there, if you think it will do the trick?
Combining it with a scarf - you would easily be able to hide all - and make a style statementat the wedding.
Well done for posting. You look great. I may well be joining you this week, the pillow was covered this morning.....
Good morning AngeNut
FAB! - you look great with your Feisty Fighter look! It suits you!
I recently posted in the Tips and Tricks bit - how to transform from 'standard' to 'style statement'
So glad you felt able to take that step to make life easier - an yes, I had that liberated feeling, too - a strange, unexpected bonus. When I now see pictures of me with long hair (I had my no 4 in mid May) - it actually does not really appear to be me ?! - Weird, but true.
Now 11 days post chemo 3 - I still have soome fuzz left - it does not trouble me - but I wish it would just go, too.
After 36 hours if heavy moulting - totally transforming my good looks, and taking half an hour to clean up the debris in the bed and everywhere else again this morning, I took up Son #3's offer of a Buzz Cut!
I had a no 4 ALL over - (wig Lady had advised no shaving as our scalps aren't used to it and might be tender - very true!).
I was dreading it, but what was worse was letting my friend and daughter seeing my sad state yesterday and my son and his wife today when I took the wig off.
In 10 minutes, my sad pathetic comb-over was transformed into a Feisty Fighter look!
I feel totally LIBERATED - which was not how I thought I'd feel...
I wear with pride my Chemo 'Crown' of honour with my PICC-line badge of bravery to be part of an amazing army!
I haven't posted anything for a while, but am still reading - love to see that there is so much humour in our situation. Belle, your blog is such fun...keep it going.
I had second AC on Friday, didn't bother with the cold cap this time, had a raging headache just thinking about it, so am now losing hair very rapidly. Hope I keep enough to keep me covered until the wig session on Tuesday. Emend is now my best friend, am going to miss it in the morning.
Hope you all have a good week.
I have a very vivid imagination - and sorry I did nearly wet myself with laughter...
Challenging after Chemo 3, it floored me, too. So amazed how you manage what you have to, simly incredible.
this picture made me laugh - Although the text should read
4 DAYS AFTER
A GREAT DAY IN THE CHEMO UNIT
Well The 'Great Shedding' has begun in earnest with me too, day 16 after FEC 1 🙄
Fortunately I had a wig appointment to go and fetch my NBF - must give it a name!
It is weird seeing 'your hair' brought out of a box and held in hand like a sleeping Guinea pig ... but boy am I glad if it! What timing - eh!
My wig lady had taken photos of me 10days ago and ordered accordingly. It still needs fitting and shaping to my head but also more trimming. But it seems as though I left my house with a head of hair and returned with half a head! The wig (still unfinished) gave me confidence to have tea out at the Chinese restaurant with husband and family.
, So thinking of you all x It's such an emotional roller coater, with no rule book and no guarantees!!
I don't have another T chemo until the 27th now - still on steriods to dampen down the reaction and have had not had another major yet (apart from tiredenss and constant itchy, burining, tingling in my face).
I have been afraid to wash my hair though after my first proper cold cap session!! Do you just leave it as long as possible and wash like every week or i'm thinking sod it - if it goes, it goes and I won't look like a down and out with horrible hair!! and feel manky!! i think the more I worry it will fall out anyway:-/
Just glad to be able to be given a shot at Chemo - T, at lease to be honest - put things in percpective x
Start my injections tonight to increase bone marrow - anyone else??
I'm opening a nice Procesecco tonight - sod it! cheers x
Big hugs x
The hair falling out thing isn't pleasant, is it Anon and Rosie 😞 The hair on my head started falling day 11 of my first FEC (which is when I shaved it) but has since had two significant sheds of the remaining stubble. Each was preceeded by a headache and as I have another headache I'm wondering if the little that's left is about to flee. I can't believe there's so much! I still have my eye lashes and brows but decidedly thin is other areas - apart from my legs which have enough forestation to be declared an area of Special Scientific Interest. One of these days I'll find David Attenborough on my doorstep asking to examine them! Anyway, if you fancy a giggle, this was the conversation I had with my husband about hair loss yesterday: https://gettingabreastofthesituation.wordpress.com/2016/07/08/nasal-deficiency/ Men!
Rosie - I hope you're feeling better soon. I found ginger really helpful for sickness - ginger beer especially, but ginger anything. And although it's counterintuitive, eating every 2 hours was good too - little and often.
I'm so sorry to hear that Bottyboo, that sounds horrible.
For the ladies who are doing the coldcap: when did you brave rinsing out the conditioner?
The coldcap was horrendous again today, even though I knew what was coming.. Now waiting for the side effects of the chemo 🙂