What great news Dai.
I am so so chuffed for you and hope that the velcade keeps doing its job!!!
Debs x
Helen
Here's to a long remission. I am just over a month post SCT and if it gives you hope, the last two weeks have seen a big improvement in my energy levels. I still need an extra couple of hours sleep a day, and have odd days where I feel terrible and sleep all day, but all in all, those are getting fewer and fewer and there is a light at the end…..
I hope that you continue to feel better too.
Debs x
Hi Sandra
Good luck with it all…I'm a month post transplant now!
I was told I could have a duvet etc….some people I know were told they had to take a brand new one in if they wanted to, and I was told I'd need to change the cover every day or so….I ended up not bothering even though we had the new duvet at home…i was so hot in the hospital I couldn't bear the thought of my beloved duvet!!
I would make sure you take fragrance free toilet wipes…if you are unlucky enough to get diahorrea, they are an absolute godsend I can promise you!!!
I hope it all goes really well for you
Debs x
Hi Keith,
Glad to hear that you're out of hospital and on the mend! It's a good feeling isn't it?!
I was also quite ill…from day 1 sadly….and lost over a stone in weight. Luckily, unlike you, I could afford to lose it as it was all weight I'd put on while I was on the Dex. So for me it was the one positive that I got out of the whole experience!!!
I'm about 10 days ahead of you and am finally seeing the light at the end of the tunnel….I hope the same goes for you soon. It is hard feeling weak and tired all the time isn't it.
All the best
Debs x
Oh Tina
They've postponed it till next tuesday- I cried when I got the letter! I feel like my toes are broken tonight…worse than they've been in ages. It's partly my fault as I've overdone it today and not had a sleep but it's depressing to know it could have been looked at tomorrow and now I ve got another week to wait.
Enough moaning!! Down with the morphine…lol!!
I wanted to ask if I could borrow that TENS machine off you too- am going to take the initiative and try it out!!!
Thank you
Debs xx
Hi nadine.
Ask away on the question front. I was on the myeloma xi trial and had rcd ( revlimid, cyclo & dex). I plateaud quite early and went onto velcade. I don't regret the Sct yet although if I'm honest there were times in hospital and when I got home when I wished I hadnt done it as life seemed so hard. But now there is a light at the end of the tunnel and life is slowly returning to normal…even the hair is growing back!! If you want to ask more and would rather do it by email my address is gascoyne2@virginmedia.com or I'm on fb. But I'll also keep checking on here!!
Keep strong but don't worry if it's hard sometimes..it will be but I'm sure you and your mum will get through it.
Take care
Xx
Hi Nadine,
Welcome to the site although I'm sorry that your mum has MM.
Why are you finding it hard to discuss it with your mum? Because of how you feel, or because of how she is? I think if you can talk about it with her, all the better for both of you….you can support her better if you understand how she feels and also, my personal view is that it is better out than in! So for her, if she can, to talk about it with you is great. She probably won't want to talk about everything, as it may scare her, but to talk a bit is good!
As for the SCT, don't be too scared by it. I had my SCT on the 18th July. I won't lie, it isn't the nicest thing in the world, but it is a bit like labour…you forget the bad bits fairly quickly! I was unlucky and was poorly from day 1, but most people are ok until about day 4 or 5 when the white blood count drops down really low. At that point, I think that you tend to suffer from ulcers and being very very tired. I slept a lot of my days away until about day 14 when I felt awake enough to want to get home!!
Good tips are for her to suck ice during the chemo and after…I didn't but was ok…..I just had ulcers in my throat but none in my mouth.
The main thing for you all to expect is that she won't be up for much when she gets back. I am still having sleeps in the day and I would expect at 36 I would recouperate quicker.
Anyway, if you have more questions or want more detail give me a shout….
Take care and don't worry too much…it will be ok..
Debs x
Ahh, thanks Tina!!
Let me see what they say to me on the 13th and then if I'm allowed to use one, I'll pop over if that's ok with you….would be good to catch up and once the kids are back at school, that'll be easier!
Love
Debs x
Hi Paul
Welcome to the site….it's a great place for support etc.
I am 36 and was diagnosed at 34 with smouldering MM. It developed and I started on revlamid on the Myeloma XI trial. Plateau'd quite early and went onto velcade and am now 44 days post SCT. Just for a bit of history!
Take it easy, fit the drugs round you as much as you can, and report all those side effects. But hopefully you'll get through it without too many problems. I know I didn't suffer too badly on revlimid (though I gave up on wine as it tasted foul!), and even the velcade wasn't too bad initially so not everyone gets a bad time on the chemo.
Join the under 50 site too – you can let out a few more expletives there if you fancy it!!!
Take care and good luck with the treatment
Debs x
Oh Gill,
How awful to have that put on you too…I hope so much that they've got it wrong and that you don't have to deal with anything more than what you're already coping with.
Love
Debs x
Hi Dai
Funny you say that oramorph doesn't work at all, as when my neuropathy first got bad, it really worked! In fact it turned my life round for the week before my SCT. But ever since, it hasn't seemed to work in the same way. It does work a little, I think, and I tend to take it to help at bedtime – not sure whether it just helps me sleep through the pain or whether it is helping the pain!!!
Were you recommended the TENS machine? If so, I'll try to speak to someone about it at the hospital.
The other thing someone has suggested is acupuncture…another thing I am going to speak to the hospital about…I have a friend who does it so I may get her to give it a go if I'm given the ok by the hospital.
I can't stand the pain I get some nights…makes me cry…..like tonight!
Debs x
Bridget,
Hope you're doing ok and that the pain is coming under some sort of control – when is your radiotherapy? Make sure you let them help you if that doesn't help. Pain is horrid and if they're offering alternatives you should take them….I'm going to try to get hold of our local macmillan re my neuropathy after your recommendation!
Take care
Debs x
Dear Min,
I really don't know what to say except that your post has brought a tear to my eyes and I am just so so sorry about Peter.
With all my thoughts and lots of love
Debs x
Thanks everyone for your responses….I've been 3 months off the velcade so have this horrid feeling this could be a permanent gift of getting a short term remission 🙁
I will definitely try to get referred to Macmillan for pain support…I'm hoping for something less 'druggy' as the gabapentin isn't doing much and nor is the oromorph.
Gill, please thank Stephen for the Coenzyme Q10….will try to get hold of that as an option…prefer that to the bedsocks (think my husband thinks MM has affected our life enough already…lol!)
Mavis, reflexology isn't a bad idea either…I could do with seeing if there is any way that I could get it more locally than the Royal Marsden is Surrey….a 3 hour round trip is a bit far. But there must be a way I can get hold of some local treatment if I speak to the macmillan people.
Tina, lovely to hear from you….how are you doing? I think about you often and talk to my husband about when we met and how sad it was to hear about Patrick after. If you ever want to private message me, feel free, or email me at gascoyne2@virginmedia.com.
Thanks everyone again.
Debs xx
Hi Russell,
So sorry that you've had to come and join us on here but hopefully IF you get the official MM diagnosis, you can come to lean on all of us for help and support. I was 34 when I was diagnosed 2 years ago with smouldering myeloma. I then started treatment in 2010 and had my transplant just over a month ago.
It is tough going and you will have loads of questions, but hopefully all of us on here can help make your journey easier…I know that I have found the forum's support amazing, and it has really helped me in my journey. The Under 50's site is helpful for those work related/ life related issues, but the main group on here are also great friends and support. I can't imagine having gone through the last 2 years without it all…so welcome and ask away!
Take care and hope you get some definitives to work with soon
Debs x
