Assorted Qs: chemo drugs/hairloss/surgery

My friend has started chemo and has just had results back on the sentinel node biopsy which was done a few days before her first session. They took 2 nodes and found traces of cancer so have told her they’ll remove all of them when they do her lumpectomy at the end of chemo. Not the news anyone wanted, but at least she’s been put straight on to chemo so that will hopefully zap all rogue cells before they can migrate any further. Time will tell if any of the other nodes have been affected. She’s bearing up well and taking things one step at a time, which is all you can really do, isn’t it.

She doesn’t like to talk about the finer details of her treatment etc (she didn’t even ask the doctors how big the tumour is) and is just letting the doctors get on with what they do best. It’s her way of dealing with things and I respect that. I’m the complete opposite and like to know everything about everything, but it means I don’t push her for the sort of information I’d like to have.

She’s had one chemo session, and I’m sure she mentioned that she was on FEC for the first 3 and then a change to something else (I don’t know what, but in reading up about BC perhaps its Taxotere?) for the last 3. She confused me a bit when talking to someone else on the phone, saying that it’s the second drug that is the one which is likely to cause hair loss. But from what I’ve been reading, hair loss is equally possible with FEC? She’s now on day 12 after her first session, so it may be another week before she notices anything. (She’s also doing a wired cold cap.) I guess the reason for my post is to see if anyone can shed any light on FEC/?Taxotere?/hair loss?

Oh… another question… what’s the likely timeframe between having the last chemo session and having surgery? Logically, I’d think they’d leave it a week or two to give your body time to recover from the last session… or is it one of those variables that can go either way?

WF

Hi - your friend is very lucky that you are being such a good friend to her (believe me far too many of us have tales of people who have run for the hills once they have heard our diagnosis…)

I just wanted to start by saying that they often do chemo first in the hope of shrinking the tumour (although some units give chemo first to everyone…) i just wanted to say that as one friend of mine had chemo first in the hope the tumour would shrink enough so that a lumpectomy would be needed rather than a mastectomy and was then totally devasted that a mastectomy would be needed after all…

I had my chemo first and the gap was four weeks before surgery - ie a three week chemo cycle plus one week and this seems about average from what i have read on here…

It is hard to say if she will have hairloss as the cold cap works brilliantly for some people… although she might find she does have some thinning… i lost all of mine in one morning about 12 days after my first chemo (they don’t do cold cap at my unit)

I had 4xac chemo followed by 4xtaxotare and for me the taxotare was tougher… but you will find that we all react differently… It might be an idea to look up the threads on here about the different types of chemo… One thng thst many people do say though is that you get tireder as chemo goes on…

Once again just want to say how good it is that you are being such a support to your friend and i would just say take the lead from her… so try and do something nice on days when she feels up to it and respect that there might be times when she really just wants to rest at home for a few days etc… the fact that someone cares and is there to talk to really does mean so much on the bad days…

Take care - both of you

Theresa x

Hi, just to let you know there is a thread on here about top tips during chemo. Can’t remember exactly what it’s called, but may be helpful to pass on some tips to your friend about coping during treatment.
Hope it helps.
Debbie. xx

Your friend was mistaken re losing her hair; it IS the FEC that causes the hair loss. In my case that was the only real side effect from FEC ( though being bald was VERY horrible!) - it was the taxotere that really made me feel ILL
Most peoplel seem to experience this- although there are always exceptions and somefolks sail thro’ tax but are very poorly on FEC. I do think with FEC a lot of the bad reactions could be managed if all oncs were as good as mine re modifying the drug regimeyou are given to couneract the side effects.
I don’t think there is much they can do re the side effects of Tax, it is such a powerful poison.

Hello
I finished 6xFEC last month and it was told that the Epirubicin (the ‘E’ - second drug in FEC) that causes the hairloss. maybe thats the cause of the confusion.
wanted to wish you and your friend well
love monica x

I had FEC and Taxotere and they were equally dreadful in different ways but I do know that the side effects I had do, not happen to eveyone and our reactions are individual to each of us. I had a cold cap and although my hair thinned I did not loose it and for me psychologically that was really good. Good luck to your friend.

Thank you for all your replies. Daisyleaf - I think you may have a point re my friend’s misunderstanding of ‘second drug’. I don’t suppose there’s any likelihood in her protocol being Tax first and then FEC? I can’t find anything online about the order of these being the other way around.

Should I say something to her so that she is better prepared for possible early hair loss? (I know it might not happen, if the cold cap works for her, but she might still go thin on top… and lose other body hair.) If she’s thinking her hair is going to be safe for at least a few more weeks, it will be one hell of a bigger shock if she finds it falling out one morning very soon. On the other hand, should I just let her have a few extra days of not worrying about her hair? My attitude is always to be prepared, but she’s different. What do you all think?

WF

Hi Worried Friend

Here’s the link to the ‘Top tips’ thread mentioned by purdey. hope it helps;

breastcancercare.org.uk/forum/top-tips-to-help-get-you-through-chemotherapy-t19110.html

Take care
Lucy

Hi WF,

I echo Theresa’s thoughts that your friend is lucky to have you supporting her. You know her best so trust your instinct about whether to give her advice to help prepare her for the hair loss.

I lost every hair on my body with FEC including my eyelashes and eyebrows (which the cold cap won’t prevent) but didn’t find it too traumatic because I knew to expect it and had been prepared for it. I also had been assured it would come back. It’s been 6 months since my last chemo and my hair is growing nicely. She might need that kind of reasurrance.

I have a great friend supporting me too and it has made a huge difference to how I coped. She encouraged me to get out and do nice things on good days as Theresa suggested and it does help.

best wishes Jan xx

Thank you all. I’ll print off the tips and pass to my friend. I’ve just spoken to her about being mentally prepared (as you can ever be) in case hair loss happens sooner rather than later. I felt like a real cow saying anything, but I think she knows it was with nothing but very best intentions. I couldn’t bear the idea of her being totally surprised by this side effect. Better to be prepared and it doesn’t happen, than the other way around.

I’m going to go along to all her chemo sessions with her and wondered if anyone can give me some hints/tips/ideas on what things are nice to do to while away the time. We never have any problems with gossiping about everything in life, but I wondered if anyone has extra tips that might be nice. Magazines are OK, but perhaps difficult to concentrate on. I’ve thought of getting some good DVDs (I think the treatment rooms have DVD players - but I’ll check). Maybe having a girlie nail painting/manicure/pedicure session. Any other ideas?

WF

Dear WF, i wish i had you by my side through my treatment, my hubby was great, but you sound like just what the dr ordered, so many of my friends did not know what to do so they did nothing! You friend will forever thank you. This sounds a bit funny, are you good at telling jokes!! Take a good joke book with you!! To be honest not much will take away the anxiety of her first chemo, but take it from someone who has been there, the first one in many ways is the worst, because from there on in you know what to expect! You know your friend, do what you think you know her better!! Oh lovely box of chocs is also a fab idea!!!
Good luck…give your friend my love and best wishes.
Karen xx

Hi WF, what a lovely person you are and a great help to your friend I am sure :slight_smile:

I have just finished 6 x FEC and had 3 different ‘buddies’ come with me throughout, although I did do one full session by myself and that was by far the worst one for me. The best buddy is one that can make you laugh as it can be quite stressfull especially as with the wired cap you have to be there so long. My boyfriend came to most sessions and he was very good at running to the shop for sweets and coffee’s and things, he didnt like seeing the treatment and I know he found it extremely difficult to stay all the time, my mother came to one treatment and spent the time telling me about all my relatives who have died from cancer and how lucky I was not to be losing my hair like so many other ladies! ( despite my head freezing to death for about 4 hours that is ha ha), by far the best one was my 22 year old son who shares the same warped sense of humour as me and we laughed about all kinds of rubbish, the time flew by and it didn’t seem so bad. Things like hand massage or foot massage would be lovely I am sure, maybe a game you could play to take her mind off it? nice drinks and something to suck too.

BTW I used the cold cap throughout and after each treatment said I wouldnt do it again next time! I did persevere and found it to be brilliant, I have now completed all 6 sessions and still have as much hair as when I started - bit more grey as I havent had it coloured and I havent had it cut since September to try and make sure I was a gentle as possible with it, but it is still as thick. My son and I did have a laugh though saying wouldn’t it be ironic if it all decided to fall out after the last session! I still have about a week to make sure, but so far I have been very glad I kept it going.

Sorry this post seems to ramble a bit, I blame the chemo brain! I hope some helps and once again, you are a treasure to your friend I am sure.

Dena xx

Hi WF

Just to echo all the others - what a wonderful friend as well as worried. Well done on the hair loss I think you totally did the right thing as being prepared makes it easier. I personally could not have handled the cold cap so shaved my hair in preperation - made me feel in control - but I do hope it works for your friend.

Just to add that the hospital I received chemo we first have a consultlation with the doctor where they check you out and give the ok for chemo you then have a one to two hour wait whilst your prescription is made up before getting treatment. It is a good time to go and get some nice food which is also good for you before treatment. Also try and encourage her to sip water throughout another must for chemo.

I’m sure you will find that there is a lot of banter with the other patients and nurses who you get to know. A good laugh along the way always helps.

All the best Anne xx

My friend rang me up yesterday morning saying her hair had started falling out (right on schedule - day 18 after 1st FEC). She’d decided to wash her hair which resulted in the crown getting totally matted up and she didn’t know what to do. I went straight over and we tried to release the trapped fallen hairs that were causing the matting, but it was futile. What was loose was coming out in handfulls, but the matted parts were beyond rescue. After hours of gentle tweaking she realised it was beyond rescue and allowed me to cut out the matted areas. I trimmed the rest (around the back) quite short, but it was still shedding fast. I expect she’ll have woken up to a bedful of hair this morning. :frowning:

I can only thank God I’d talked to her so it didn’t come as a total surprise! I did find it shocking that she’d not been adequately warned by the hospital - nor given any advice on minimising the matting (maybe if she’d given her hair a good brush before washing it, to remove all the loose hair first it would have matted up less?). No advice on getting some headware (scarves, hats, etc) ready in preparation JUST in case. But she’s very philosophical about it. She knew it was always going to be a risk, but neither of us were prepared for how quick and dramatic the shed would be. F***ing disease!! Next FEC is on Tuesday, so I’m taking her wig shopping on Monday. I know a fabulous place who will get her sorted out.

My next question to you wonderful ladies is about eyelashes/eyebrows. Whilst I expect everyone is different and just as not everyone loses all their head hair, not everyone will lose all their facial hair… what’s the likelihood and how soon? Is this about to go imminently too?

WF

All of my hair fell out in one morning as well (infact it was so quick that my husband went to walk the dog and by time he got back i was practically bald…) i did also go on to lose all my eyelashes, eyebrows, underarm hair, and bikini area hair - for some reason i never did lose my hair on my legs lol. i found the eyelashes and eyebrows went last but i think it varies from person to person… i also lost the hairs in my nose and found that it then tended to run like a tap… my eyes also used to water alot - especially when out and about…

I am so sorry that the cold cap has not worked for your friend but it is so good that she has a good friend like you…

Theresa x

Hello WF

I am so sorry the coldcap didn’t work for your friend, it angers me that we have to go through this horrid side effect, as if it doesn’t strip enough of your femininity, it’s about time with all the funding that goes into research that they can’t try to eliminate some of the nasty side effects.

With regard to the eyebrows I found with mine they went a bit patchy around the second FEC, and stayed like that for a while, but once I switched to TAXOl (last one 24th), they went even patchier, having to pencil them in now, the eyelashed have also diminished with the Taxol, and I went and bought some falsies today, not sure if they will hang on for much longer,

Ann x

Hi worriedfriend,

My wife, Janet, had total hairloss with EC (like FEC without the 5-Fluorouracil). This was all over her body except eyebrows and lashes. When she went on Taxotere (she had 4xEC and 4xTax), her eyebrows and eyelashes started being affected and there is very little left there now.

Regarding the wig shopping. Obviously, if she wants it then go on, but Janet absolutely did not want to wear a wig, apart from some some cheap novelty flourescent ones for a bit of fun. It just wasn’t anissue for her going out without hair (except for the cold, of course), and to be honest nobody else has really made an issue of it, although one or two have politely asked about it, usually having been affected by cancer themselves in some way. (This is all provided that it does come back eventually, of course!) So, it’s not automatic that a woman will want to wear a wig; she has enjoyed buying and wearing various head scarves and hats, though.

As people have said already, the worst side effects by far came with the Taxotere, and that was quite awful at times. It was hard to see her suffering through that, particularly the first cycle, but good to be able to help her and comfort her. So far, the aromatase inhibitor (Letrazole/Femara) has been a lot worse that the EC was as well, giving her terrible muscle pains, but apparently that should ease with time.

Hi WF,

Reading this thread has brought back so many memories. As soon as my hair started to fall out I asked my husband to shave it off. As well as the practical, making it easier to wear the wig/scarves etc, it made him face up to the reality of our situation. I thought he’d be upset but he made great jokes all the time while he did it and made it more bearable.

Like the others, my eyelashes and brows went more gradually and I have to say I mourned them more than the stuff on my head. If your friend’s go she will need reassurance about her appearance. Having no eyelashes does give you a wierd look and there’s not much you can do about it. There is a charity called Look Good Feel Better that gives great advice about making the best of your looks during treatment. They also provide great freebies from some of the major cosmetics firms. They have a website but I don’t think we are allowed to put links in posts. If this one is deleted just google it. lookgoodfeelbetter.co.uk/site/index.cfm

Jan xx

PS. I’m sure your friend appreciates all the advice you are giving is meant with the best intentions.

Hello Worried Friend,

My eyelashes and eyebrows stayed through FEC and went on Taxotere. As I had a great wig, I felt worse about going out in public when they went.
False eyelashes are tricky unless you’re very adept and I wasn’t!I bought some and took them to a local beauty salon where they taught me how to put them on,and then watched me doing it and commented all the way.They only charged me £5.00 for almost an hour of their time and were exceptionally kind.( I had to buy my own strip lashes as all the salons I phoned use the individual ones that attach onto an existing lash.)
Brows hung on just enough to pencil them in but many girls have mentioned Browzings(?) as very successful. Also I did find an American website that sold stick-on real hair brows.
Good luck for your friend with all of it - I found it better if I had read up on the possibles and was prepared but my family call me a control freak.
Lastly, you are a truly wonderful friend and just what your pal needs. Really, you could run seminars on how to be a great friend to someone with cancer!

Very best wishes,

Alloway.

PS If you ever feel you need another friend, can it be me?!?

Hi there

Firstly what a wonderful friend! I lost most of my body hair with FEC and although I didn’t lose the hairs on my legs once I shaved them they didn’t grow back for the duration of treatment. I didn’t lost all my eyebrows but most of them and just used eyebrow pencil to fill them in. Again eyelashes I lost some but not all. Losing nasal hair was unexpected and does make your nose run more.

I hated wearing my wig and kept it for going out into town and things like that. It looked good but I found it rather hot and itchy. When the weather got cold I used a wool hat. I also used scarves and around the house I had what they call a jersey cap which was much more comfortable. I found it was a bit of trial and error as to what I found worked for me but I didn’t like to be seen without anything.

Breast cancer care do a whole range of booklets that could be very useful for your friend. They do some on losing hair, undergoing chemo, etc etc. Can I suggest that you or your friend gives the helpline a call and ask if they could send you what they feel would be helpful.

hope all goes well for your friend.
take care
Elinda x