[HelenParticipant]

Well, 12 weeks since the melphalan and SCT and I have whinged and moaned my way to this point. Beginning to feel like my old self at last. Bloods show am in complete remission and the colitis is settling. BMB and next bit of myeloma xi trial next week.

This one is primarily for the ladies but you chaps might come up with an answer or 2.
As some of you will know from other threads I'm a normal sort of girl and up til recently thought I was quite low maintenance, until my hair fell out!!! Then I realised just how much my hair mattered to me and how much my appearance reflected my sense of self, sounds truly vain but there you go, got all the way to 57 before I bothered, just shows what you take for granted and in the words of the song ' you don't know what you've got til it's gone'
It is now starting to come back again, hurrah, 🙂 but is alarmingly grey, :-(, so will need much expensive treatment:-) The question is when to start? and at what length? And what colour, ( previous brunette)?

I want to thank the person who recommended the aqueous cream for the itchy skin as it works well for me, as does Aveno cream and Hydromol but the hydromol can mark clothes. Slipping into bed takes on a whole new meaning;-) My skin is so dry it looks more like lizard than baby.

And now I've another question, about the awful finger nails. I know the dark lines are down to the chemo but does anyone have any tips about the flaking nails which are a real nuisance and catch. Any magic cures?
Helen

[AndySParticipant]

Hello Helen,
I'm glad that the big things are going so well for you. The little ones can be very annoying though, can't they? I'm at six weeks after my STC and like you, am doing fine. I still don't know what my PPs are yet though. I still have some hair although I've had to cut it very short so it doesn't look like the moths have been at it. I fantasise that it will be dark when it grows back again. I started to go grey when I was eighteen and have looked like a snowball for over twenty years so if I want dark hair I think I'm going to need to cheat, which is too much like hard work. As you say, a woman's hair is part of her being and losing it must add to the stress during a very stressful time. For us men, looking like we've escaped from Eastenders is the most we can complain about.
I can sympathise with you about dry skin and things. I've been OK until a week or so ago and then my eyes and eyelids started to itch and now I'm getting dry skin and itchy rashes too. Aaaaarg! I'm not a patient person and if it itches it has to be scratched!
I hope your recovery continues and your remission is complete and long.
Best wishes,
Andy

[tomParticipant]

Hi Helen and Andy

Well me just being a mere male Helen I dont know what to say about "Hair Loss" as I have been losing it for some years now (I know bless me)

I think the itchy thing and rash is your Body hair regrowing? (just my thoughts) and its also strange that mine grew back Blacker for a short ime then it realized who's head it was on and went back to grey Lol.

Ur Both Doing well keep it up

Tom "Onwards and Upwards" x

[BADGERParticipant]

hI Helen

I think keeping up appearances is important ''going grey never '' I aim to grow old disgracefully a nice chestnut rinse is my choice semi perm so lasts about two months I use E45 for dry skin it works for me as for fingers and nails if you can find some cotton gloves smarm your hands and nails with lanolin and leave over night my gran used to do this it worked every time.I am really glad you have come through your SCT and have achieved complete CR KEEP IT UP;-)
Love Jo x

[mhnevillParticipant]

Hi Helen

So glad you are now so well on the other side. I do understand about the hair though. It would be the thing I would hate the most.

Take care and enjoy getting glam again!!!

What does the Trial you are going on consist of? Is it a maintenance thing?

Whatever, very best wishes and thanks for sharing all the ups and downs. May there be many more ups in the future.

Love

Mavis

[HelenParticipant]

Hi there Andy, Tom and Jo thank you for your suggestions, that moth eaten look is soooooo.. Unflattering! Jo I'm going to have to dye it, my mum at 84 has no grey hair so there is no choice! The question is when and what colour, so many choices!
Mavis the myeloma xi trial is in 2 main parts medication wise, the first is at the beginning of treatment,when you are randomised to have either revlimid or thalidomide as your induction therapy to reduce the myeloma cells as much as possible ( revlimid is the new hope for treating myeloma) with dexamethasone and cyclophosphamide. After a few months if your light chains or pps have dropped enough you either have sct or not.( if pps or light chains not dropping enough you change meds to velcade then sct or not) Then 3 months after the sct you are randomised again to revlimid as a maintenance drug or no treatment and we all wait and see what happens. The trial goes on for each person until relapse. I think Debs Jet and Carol are all on the revlimid maintenance now as part of the trial so it will be interesting to see how things progress. I find out next week which arm of the trial I will be in.
Helen

[mhnevillParticipant]

Thanks for the info Helen.

Hope whichever arm of the Trial you are put on it works for you. As you know I have every admiration for those of you willing to take part in the Trials.

Here's to a "good hair day" soon!

Mavis

[HelenParticipant]

Well I now have 3 mm of hair and it seems darker as it grows, does this mean grey hair grows faster than coloured hair?
Have now been randomised to revlimid arm for maintenance on myeloma xi trial, so hoping for very few side effects.
Helen

[tomParticipant]

Hi Helen

Am pleased you are getting your hair back 😀 and am sure you love the darker side of you he he, good luck and hope you have few side effects

Love

Tom "Onwards and Upwards" xx

[HelenParticipant]

Ha ha Tom yes a move to the darker side would be good! I went for an estimate on the hair today , the poor hairdresser said I should return in January and he'll see what he can do, i'm currently a suedehead!
I suspect he will become a richer hairdresser as a result.

[tomParticipant]

He he what did the poor hairdresser say? I remember my older Brother going to a "Posh" Barbers to have his haircut and the Hairdresser said "Is Sir chewing Gum?" and my brother said yes I am so the Hairdresser got some tissue and offered it up to my Brothers mouth and asked him to "Spit it in here I cant cut your hair properly if your chewing as your scalp moves" he he, good luck to you and your Hairdresser in the new year

Love
Tom xxx

[HelenParticipant]

Ha ha yes when I raise my eyebrows my whole scalp ripples! Not a good look! Hairdresser was quite shocked at how grey it was, lots of dye will be needed, not a lot else said-was greeted with big smiles by him and all his staff though and a big hug, so worth going if only for that.
Love Helen

[eveParticipant]

Hi Everyone
You do make me laugh Tom,Slims hair looks a bit moth eaten and he has not had SCT,just 11 cycles of different chemo,but cannot complain it is starting to do the trick.

Helen it is so nice to hear you so cheerful,I thought I would mention a few products that might help eg: Polytar from boots, it help with itchy skin,.Aqua cream you can bath in,gets all flaky skin off.I thought after chemo they did not like you dying hair???could be wrong but would check!!:-(

Nice to see everyone so cheefull love Eve

[brochoParticipant]

Hi Helen last year I was so grey it was like looking at a stranger in the mirror till I had it dyed !! What a differencee instantly felt brighter and more lively so boo to growing old gracefully !! You should wait 3 months after chemo before dying , I booked my appointment for 3 months and 1 day !! Happy hair days love Bridget x

[HelenParticipant]

Hi Bridget and Eve
Thank you for your kind replies, I'm making a concerted effort to keep positive.
I will be at 5 months post chemo by mid jan so should be ok for dye by then, and it will be about 2 cms long then, they think slow to start due to the severe effect of chemo, so hopefully it will be long enough to see a different colour! Bridget, I quite agree to the growing old disgracefully, got to start now 🙂
And Eve I have used the aqueous cream and it is great though i don't put it in the bath as i'm terrified i slip. I will try polytar if it stops working.
Now I'm just getting to grips with the revlimid side effects again, oh joy!! ……. Not:-(
Love Helen

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