[kaychappersParticipant]

Hi
Can anyone tell me if they have had a SCT when their pp levels were at 20 or thereabouts which mine will probably be. Also does all your hair fall out, as I need to think about a wig for when I return to work, don't want to scare the staff or clients 😀 I know this is a very individual disease, but how long have people taken to get back to work/normality (whatever normality is 😀 )

Many thanks
Kay

[brochoParticipant]

Hi Kay I think my pps were about 14 ,but I am not certain they might have been higher Unfortunately melphalan will definitely cause your hair to go so it would be a good idea to ask for a referral for a wig now If you have a good hairdresser they can style it as you want. I didnt have a wig because I am such an untidy person and I just knew it would be skewiff without my noticing !! I settled for scarves and soft hats , if you send me your address I will knit you a hat ( bridget.rochfort@btinternet.com). Before very long you actually get used to no hair and may even feel comfy without covering up at all, especially in the warmer weather It did take me several months to recover but when diagnosed I had 98% myeloma in my bone marrow , plus major surgery , I doubt it would take too long for you love Bridget x

[PerkymiteParticipant]

Yes, it will all come out, mine did. I had my SCT in early December and have just got all my hair back now, it started returning about 2 weeks ago.

kindest regards

David

[GillParticipant]

Hi Kay

I cannot help with what pp level Stephen was when he went in for his first SCT but he did lose all his hair. You might consider having a hair shave party before you go in. You may even persuade other family members and friends to shave their heads and raise some money for charity.

One thing Stephen did not consider was his beard (not inferring for a moment that you have a beard Kay). He kept waking up in hospital with little sharp needle hairs sticking into his face, ears and neck.

One tip. When you come out of hospital you will have very little appetite. Have tiny portions on a tea plate. It is not overwhelming, but you feel that you have eaten a plateful of food and the amount is quite manageable. Stephen?s first meal was 1 scrambled egg and the tiny centre of a rib eye steak. He pronounced it the best meal he had ever had!!

The very best of luck with your SCT Keep us posted as to how you are doing Gill xx

[brochoParticipant]

Hi Kay Gills post just made me giggle cos when I am on bloody dex I do get a beard ( only a teent one !!) Just thought of an sct advantage of sct thought —- you dont need to deal with hairty legs or anything for months, its brilliant love Bridget x

[lorraineyParticipant]

Hi Kay,

My pp was 28 when I had my SCT and all my hair fell out too! I was dreading losing it and I got a wig, scarves etc but I shocked myself because I only wore my wig twice and never wore my scarves!

Good luck with your SCT

love Lorraine xxx

[kaychappersParticipant]

Thanks to all your replies. They made me laugh. Im also on the Dex Bridget and the hairy top lip and eyebrows seem to grow weekly. I have to look twice in the mirror some mornings to make sure its not my partner. I had all my hair cut to short a month ago and its amazing how short hair and 1 and half stone later people keep telling me how well I look 😀 Probably because I looked so white, tired and pale for the months before. Must admit bit scared about the SCT but you are all positive that the fear is not so bad – just the unexpected.

Thank you all Kay x

[DebsParticipant]

I am so glad that it is not just me!!!

I have got so fed up with the hairy top lip that I have been having electrolysis on it for the last few weeks….No offence to men, but I am fed up of having more hair than my beardless wonder of a husband!!!

Sadly, can't deal with the weight gain in quite the same way, but nevermind!

xx

[brochoParticipant]

Hi Debs you are certainly not alone!As for the weight I have been size 10 -12 for years even into my fifties but now I am a large 14 and so peed off with !! Its now getting to the point where I cant face going out Trouble is its so difficult to get any excercise as my back causes problems and lately I have totally lost my get up and go!! Moan over feel better for that. I dont get mad at having cancer but why does it have to make me ugly too!! Still we will come through it the end How are you getting on with Rev? love Bridget x

[kaychappersParticipant]

oh its so good to be able to have a moan about weight. I started at size 10, replaced my wardrobe with 12 and just replaced it yet again with 14. My face is bigger than the moon, and yet everybody keeps telling me how well I look (good ole steroids). I dont feel so alone now. Anyway off to have another biscuit, well I have to have something to stop the taste in my mouth 😀

Kay x

[JetParticipant]

Sitting here laughing… kinda!

I have the absolute opposite weight problem…

Throughout January, prior to being diagnosed, but unknowingly having hypercalcaemia, I had no appetite, felt nauseous and could barely eat a thing. I lost 14kg – that's 30lbs.

Since my diagnosis, I have a friend living with me who puts a lot of effort into cooking, feeding me and encouraging me to eat, so I am eating, but not putting on weight… and not really enjoying food to be honest – eating is a chore these days.

All my trousers look like empty sacks of potatoes on me. When I look in the mirror, I'm positively scrawny. I've gone from a lovely round voluptuous 14 to a flat-bottomed, smaller chested (was G, now DD) size 10. Where's my bottom gone???? My skin's also a bit too big for the flesh in it, so it looks saggy like an older woman. I'm only 49!!!

I know a lot of women would think that was a dream come true to drop 2 sizes, but I really liked my body before and now having to get used to this new one which I don't much like and like you've said it makes me feel less confident about wearing nice clothes and going out looking good. It's like I have to get to know my body all over again.

On the plus front, I do look great in leggings now. And I found a great DD push-up bra which makes a wonderful cleavage. And yesterday I finally bought some trousers that actually fit… even if they don't replenish my bottom.

[DebsParticipant]

Oh Bridget and kay,

So similar!! I've gone up 1-2 dress sizes no matter what exercise I manage to fit in on the odd good days I have. And whilst I eat, I don't feel I overeat massively….occassionally yes (it is that taste thing isn't it Kay….awful!) but not loads. I am hoping some of it is water retention.

And like you Kay, everyone keeps telling me how (With the lovely rosy dex cheeks!) I look so well….so fat they mean! I am now the size I was when I'd just had my son, and am VERY depressed about it all. But am trying to get on with it and just watch a bit what I eat….that said, my parents are round for tea tomorrow and we're having scotch pancakes and cake!!

Oh well…..Jet, sorry you are sad to be the opposite….it is all about self-image isn't it whichever way you go. Though I think I would still rather have lost my curves and my boobs than have developed twice as much…especially with the summer coming up :-(. But I do sort of know where you are coming from too.

Debs

P.s Bridget, not on revlimid anymore as I plateaud…..now on velcade (cycle 2), with cycle one bringing me down from 27 to 15….keeping fingers crossed I don't do the same as with revlimid where I just stop going down now!! Find velcade exhausting but if it works, I don't care!!!

[tomParticipant]

Hey Girl's

Now lets put a mans perspective into this one ha ha

Firstly I have to say for those that are due to have a SCT :: Honest it will be worth it here I sit what ?? call it 16 Months Post Transplant and am doing great 😀 for me it was and still is the best thing I could have done to make me Better8-)

Now the Tash thing, now that made me Laugh real loud (i know i shunt:-S ) but as for a mere male who was/is wot I call "a hairy backside docker" having nothing, nowt of any hair on my body cept eye lashes I can tell you it was cold ha ha, and weight loss dont wory about that I went from fat to skin then back to fat 😎 I now have my belly back (with a vengance i have to say he he)

Last bit of advice today from iccle ole me:::::dont throw out your old clothes cos your normal weight will come back (curves and all)

Have a great Week end and Stay well

Love Tom "Onwards and Upwards" 😀 xxx

[JetParticipant]

You kept your eyelashes?????

Wow! That's exciting. I was thinking of not buying a wig for my head, but maybe some of those 60's style huge spidery false eyelashes – just to make a point. Maybe I won't have to…?

[tomParticipant]

Hi Jet

Yep I kept my Lashes 😀 mind you it was the only hair i had left, and when it was growing back I could have took a bit of old rough samnd paper to my body to stop the itching lol.

No you wont need fals lashes and as for the wig some ladies look sexy with no hair 😀

Tom "Onwards and Upwards" xx

[Author]

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