This topic contains 27 replies, has 11 voices, and was last updated by 
Helen 11 years, 5 months ago.
Hi Babs and Helen
Thanks for your reply. I do hope your side effects settle down Babs. My Mum hasnt started yet, I think she will collect the tabs 10th Dec, start them 11th Dec. She started on Warfarin last Tuesday, so they have to make sure thats all sorted before she can commence. Its funny you should mention the itchy head, Mum is forever scratching and not only her head. I think I have read on here this can happen after SCT?.
Helen, did you have the tummy problems when you had Revlimid as your initial treatment?. Thanks for the advice re the time to take them. Mum struggles to sleep at night at the best of times:-) Did you have a lovely weekend away?. Mum is coming on in leaps and bounds, not napping in the afternoons, although still tired so she has a sit and a cuppa instead. Her hair is coming back, although not as quickly as she'd like. I think the wig is getting on her nerves abit now, so we went shopping to get a couple of hats yesterday. She still wont let my kids see her without the wig, although im sure they wont be at all bothered, she says maybe at xmas it wont look so strange to them. She is a little apprehensive about the maintenance starting as she does feel so good now and doesnt want it to set her back at all,
Cant believe you are still coughing! bet you are really chuffed off now:-|
Hi Ali
I've had tummy trouble since the beginning, we were never sure what was the cause but now I'm just on the Revlimid I know how it affects me now and there is a pattern. But it is worth it if it keeps the mm at bay.
As for the itchy head, I had big problems with the wig, it itched at the sides until I couldn't bear it any more. One day I took it off and had blood streaming down my face where it had irritated so much. I think the hairs don't always grow through properly and they stick under the skin and try to ingrow a bit, so it itches a lot. I have no trouble now though:-) I think there was much info given to me when I asked about this last year on one of my threads.
I decided to go wigless, see attached, just before Christmas last year. I had lots of mascara, beautiful dangling earrings and lots of moisturising hair stuff, Aveno, and some Italian stuff which felt fabulous and was full of olive oil. I was told by one of my friends that I looked like a London artist and just flaunt my short crop as if I'd chosen it! So I did.
We had a lovely weekend, walking round the town and visiting the Christmas fairs that were on, hoping the water levels don't get any higher.
As for the cough,! 🙁 I'm really bored with it. It's at least 103 days now since I first noticed me coughing, my family, work mates and friends have had to put up with me sounding so disgusting for months now, it's getting less but its still obviously bad. I suppose it'll go eventually, one thing I'm very glad about is that no one else I know has got it so I didn't pass it on to anyone else thankfully.
Love Helen
Hi Helen.
Thank you for advice on taking revlimid in the evening,I may try changing the time and see if it suits me better,
I too found wearing the wig made me itch, I only got one because my daughter was getting married on 13th July and I wanted to wear a hat which didn't fit my bald head, however half way through the evening I took the wig off and like you had compliments saying how the short style actually suited me! I am now sporting a short very curly head of hair and the longer it grows the curlier it gets!
Also since starting the maintenance I have also recently had two nosebleeds, one last thursday and again tonight!
Hi Ali,
Tell your mum the hair regrows quite quickly, it just seems to be forever as she will be looking at it every day and it is strange to have lost your hair !!
I too am apprehensive about doing the maintenance as was fairly well before hand, (well before the toncilitus and candida infection any way) but I felt this way before my SCT as was feeling very well after the 6 cycles of chemo and it is terrifying to know I would be so ill but I just looked to the future and hopefully a long remission.
Love Babs
Hi Ali,
Thats's great news for your mum and for all of you! I'm so glad your mum is doing so well after her SCT, it is really encouraging to hear there are great highs to come from such lows. My mum has just started CDT today after her diagnosis in October. Her kidneys have significantly improved therefore she has been allowed thalidomide. She's still getting pain in her back so they've changed her pain medication which I'm hoping will help. She's on day 1 of the 21 day cycle so should not start cycle 2 until boxing day. I just hope she feels well enough to enjoy Xmas day with us and her grandsons. She's been up and down since getting out of hospital and as the boys have had cold, she has only seen them once in a month 🙁
Best wishes to your mum, what fantastic words….'complete remission'.
Love Emma.x
Hi Emma
Thankyou for your kind words. My Mum started her treatment this time last year, and if im perfectly honest it was not the best Christmas any of us had had ever had:-( but it was worth it to get to this stage. Its amazing to see how far Mums come this past year, im so proud of her. We are looking forward to a very Merry family christmas.
I do hope your Mum goes on ok with her new regime and the side effects are few, and the new pain relief kicks in quickly. Good to know that her kidney functon has improved. She can do it! and so can you, you will get there.
I know what you mean about keeping the kids away, I have 2 boys 9 and 6 and they always seem to have a sniffle or cough, you cant be too careful can you?.
Please keep me informed of your Mums progress, you can always send a private message if you prefer.
Love Ali xx
Hi Emma & Ali,
Emma just a quick note to wish your mum well on her treatment, and so glad her kidneys have improved too. A huge bonus. This time last year colin had done one cycle and started the second. It felt like a massive mountain but it was surprising how we soon got into the swing…..not normal but a new normal!
Like Ali we didn't have a rave up at Christmas, but never do, but considering we were dreading it, it wasn't too bad and we managed to go out for a meal,totally un planned and that's how we've managed this, be more spontaneous and taking the opportunity to do things when Colin is well! Good luck.
Ali so glad your mums doing well, it's such an inspiration to us….any chance of you putting a picture of your mum on? It would be so nice to see her. She's been a real trouper and it will truly be a great Christmas for you all 🙂
We've got the stem cell nurse tomorrow. Colin is eating and drinking very well (no beer like chris) but lots of ribena and other soft drinks so quite happy with that. If they can get to bottom of the polymyalgia and get the pain management right then that's good.
Best to all
Vicki and Colin, who is asleep AGAIN, and I reckon it's cos he doesn't want to speak with me, ha ha!
Hi Vicki
Attached photo of my Mum and Dad:-)
Ah Ali, that's lovely. Nice photo of them both.
You resemble your mum :-). She looks like a real bundle of fun!
Nice to put a face to a name….
Colins line came out today, so free of all gadgets! Hooray. So relieved. Bloods doing good and we are told he can eat normal food now, even Stilton! However we are saving that pleasure just in case!
Hope all going well with you!
Vicki and Colin x
Hi Ali
Great photo of your Mum and Dad, Handsome Man and a Pretty Lady 🙂 you have some good Genes in you girl 🙂
Vicki and Colin (and all you others) just to let you know My Stem Cells are three years old today 😎 so as i have said its well worth the wait 😀 , good to hear Colin's line is now out 😀
Love to you all
Tom "Onwards and Upwards" xxxx
Ali what a lovely photo. You all have had a hard time so enjoy and have a great Christmas
Love Jean xx
Hi Megan
Just a note to wish Phil all the best for tomorrows harvest. Hope all goes to plan and you get millions.
Take care Love Ali x
Thanks Ali,
It is really sweet that you remembered the date. Phil and I are looking forward to ticking another stage off on the road towards remission, hopefully tomorrow will be enough to get stem cells for two transplants but they have Phil provisionally booked in for Thursday as well if needed.
The picture of your Mum and Dad is great!
Megan
Hi Ali
What a good photo, your mum and dad look really happy together.:-)
Love Helen
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