Still no hair on E-CMF?

I am on the Tact 2 trial, arm 2, which is E-CMF,
I have had the accelerated Epi and I am starting my second CMF next week, my consultant said my hair would come back with the CMF, but it’s nearly 6 weeks since I finished the Epirubicin and there’s still no sign at all, is this normal?

Hi Shelia
It’s still early days and the whole hairloss and regrowth thing seems to be different for everyone, so I don’t think there is any reason for you to worry. I was on Arm 1 of TACT2 and my hair started sprouting again (though it’s fine fluff and not the proper stuff yet) after my first CMF… I understand the accelerated epi is tougher on the system, so maybe your follicles just need a little more time to get going again. The wait is so hard isn’t it… we all want our hair back as quickly as possible.
Nicola

Hi Nicola,.

Thanks for your optimism and encouragement. Sometimes all you need is to discuss these things with people who are going through it themselves.

How are you finding the C.M.F. compared to the Epi?

Hope everything is going O.K. for you.

Sheila.

Hi Sheila - you’re at a similar stage as me - I’m on Arm 4 of the TACT2. I had the accelerated epi, same as you and next wed I start my second batch of xeloda tablets which are on 3 week cycles. Anyway, I’m suffering the same lack of hair regrowth at the moment so will keep my fingers crossed for yours whilst I keep looking for that elusive 5 o’ clock shadow! Nicola - I hadn’t thought about the accelerated epi being tougher on the system but that makes me feel better as I was wondering why my hair seems a bit slower to return than other people’s. Also, I feel so exhausted all the time and wonder if maybe it’s the build-up of the epi rather than the xeloda tablets that I’m currently on. It probably doesn’t help that I needed antibiotics for a chest infection the other week. Anyway, way past my bedtime (9.30pm now!) so night night and pleasant dreams everyone.

Nicola

Hi Sheila
So far I’m fiinding the CMF much easier - basically I’m a bit tired and also a bit hyper from the steriods the following day and then basically back to feeling almost normal!I’ve not had any nasty little niggles yet (such as styes and mouth ulcers) that I got with epi and my first 2 epis were really debilitating fatigue-wise. I have to say I don’t like taking the cyclophosphamide at home as tablets for 2 weeks - wish they could just chuck it in with the MF - I don’t like the constant reminder and worry that I might forget to take them! How was your first CMF? I hope you do as well on it as me. Was the acclerated epi Ok to deal with? I was hoping to get Arm 2 to speed up the treatment.
Nicola

Hi Nicola
I think I was just typing my message as you posted yours - so sorry that it looks like I ignored you! I’m sure a chest infection can’t help how you’re feeling - hope the exhaustion improves soon. For a while on the epi I couldn’t stay awake past 8pm!
Nicola

Hi Nicola(s).

Hope you had a good night’s sleep. Thanks to the other Nicola for her comments, it is a very good point. I have been lucky so far, as I haven’t suffered with any ailments or infections but I have been a bit of a recluse lately! I try to keep away from crowds.

I have also been quite lucky as I have’nt had any serious side effects either, I hardly needed to take the anti-sicknes steroids.

I did notice that the tiredness seemed to build up with succesive Epi treatments but I was usually back to normal about 5 to 6 days after the treatment. I start my second CMF next Weds, i’m finding the effects easier but more drawn out, the CMF leaves me with a dry mouth and a stomach like a washing machine, it also dents my appetite.

I try hard to do all kinds of healthy stuff when i’m feeling ok to try and get myself fit for the next attack! We’re off to Llandudno on Friday for a walk around the Orme

Sheila

Hi Sheila

I’ve turned into a bit of a recluse too - certainly while my immune is at its lowest - anything to beat those bugs! I asked my onc when I first started chemo whether I should be avoiding people and she very wisely said “see the people you want to see”, which means I feel absolutely guilt-free in my self-imposed semi-isolation - there’s still the telephone, afterall. I take lots of windy walks on the beach to blow away the cobwebs and to try keep myself as fit and healthy as poss - and the walks tend to get longer as I approach my next attack!

Hope the weather is lovely and sunny for your trip to the Orme. Don’t know Wales really at all (googled Orme and it looks wonderful), but definitely want to explore the coastline and castles at some point.

Nicola

I’m glad it’s not just me that feels a bit like a recluse. I’ve not seen my sons swimming since last summer because I was poorly after surgery then on the chemo and it’s a really hot, crowded place to wait so hubbie takes them to their lessons now. Also, he does most school runs and other running about - it’s lucky he’s self-employed otherwise we’d be a bit stuck. THe Xeloda tablets sound a lot like the CMF - easier overall but side-effects more drawn out. I certainly feel a bit brighter today on my “week off”. Next poisoning cycle starts next Wed.

Beach walks sound good to me. Our coastline isn’t as nice here though - we’re about 15 mins away from Lytham St Annes/Blackpool etc. We’ve holidayed in Wales for about the last 4 years and I love being on the beach there with the kids digging away. Last August, we had a week at Borth (near Aberystwyth) and had lovely weather and it really did me good as I was then in the 5 week period between dx and surgery. Roll on next summer!

Nicola

You’ll be back in the swimming way of things before you know it - all three of us are on the chemo home strait now. It’s rotten for anyone to get bc, but I can’t help thinking it must be much worse for those with kids (especially young ones)… not just the added worry and pressure for normality (and those additional pesky bugs!), but missing out on some of the usual fun stuff must be very hard. I’ve never had a desire for kids myself, but enjoy seeing my friends’ children.

Anyway, I’m self-employed too… and really should get on with some work now! Hope you have a great weekend now you’re feeling brighter.

Nicola

Sheila,

Just to reassure you. My hair only started to reappear on reaching cycle 4 of CMF, which I found to be really annoying. I now have about an inch of hair post 8 weeks of this last cycle.

Best wishes, Pauline

xxxx

Thanks for all your encouraging replies, I was begining to feel my folicles had given up! we didn’t go for the walk as the weather was too cold and windy which could be a problem with my wig!

Sheila
xxx

Hi ladies
Pleased to read your comments about the hair loss for CMF. I managed to have the cold cap for the first 2 of my 4 Epi treatments, unfortunately I ended up in hospital with an infection before my third one, and didnt want to mess about again with it for the last 2 sessions. My hair is still covering my head, but I have moved on to the CMF and had my second dose of the 1st cycle last Tuesday. My hair is about 3 inches long and wispy and I am waiting for it to finish falling out (nearly there now) so that I can have it all cut really short without having to resort to shaving it. I have decided I have come this far,so I am hanging on to it. Hopefullythe regrowth will then catch up my existing hair and it wont look too freaky. I just wear a bandana in the house and its cold enough to wear a warm hat when I go out,although going in and out of the shops means my head heats up and I must remember not to pull my hat off in front of the horrified public. It doesnt help that I have been having hot flushes for the last few weeks, so I suppose my menopause must be kicking in, so I am like a little ready brek kid, glowing as I go!
Pauline, I didnt realise it would take so long for my hair to start growing again, is it really dose 4 of the CMF before I can get some covering? Oh well, if I can get through Xmas with it, the only way is up!! Still cant get on with my wig,so I will just have to wait.

Cheers

Annabelle xx

I’ve been anxiously peering close-up in the mirror the last day or two but I’m fairly sure there’s a darkish “shadow” starting to appear on my head now. I start my second cycle of Xeloda tomorrow. I don’t know if it’s just me but I won’t believe it until it really happens!

I dropped off a bottle of wine as a Xmas present for my hairdresser today - she’s been really lovely and supportive. My parting words were “I’ll be back in the New Year for a haircut!” Maybe not early New Year but at some point before Easter hopefully!

Annabelle - I sometimes think the same about taking my hat off - I’d hate to do it without thinking!

Nicola

Hi Annabelle

I am afraid with me it really was cycle 4 of CMF before signs of growth appeared…but as we are all so different you could well be more fortunate than me. The Onc told me to expect a full head of hair in 3 months. I imagined that I would have a lovely head of short hair by then but what I think he was getting at was that it would thicken up by the end of the 3 months and all folicles would have started some growth…aaaarrrrgh…I just wish it would all hurry up and grow!!!

Take care, Pauline