[NadineParticipant]

Hi there,

This is my first post to the site as I only registered last week, I,ve tried unsucessfuly to post on two previous occasions so let's hope third time lucky!.

I really don't want to ramble on too much but would just like to say my mum was diagnosed at the beginning of the year (she's 69) and although i've attended appointments with her I've found it really difficult to discuss with her.

She's had quite a robust treatment regime and now her paraprotein? levels have come down to single figures they are keen to start her on the process for the SCT. I must admit I've been quite acared about this however what has been great is reading several of the posts on here which have been nothing short of inspiring!.

Guess what I'm really after is some words of encouragement, honesty of what to expect from this procedure and help in speaking about it with mum who I feel I'm really letting down.

Many Thanks x

[tomParticipant]

Hi Nadine

A warm Welcome to tis great site, but am sorry you had to join.

I hope your Mum is doing well on her treatment?, As for the SCT I had one in December 2009 and am still in remission and doing well (am 56 now)
Please dont ask me what my para/bloods red or white marks are cos I just dont know (av bin told its a man thing:-0 )

But as for encouragement I can sort that out, I had my sct as i said in december and know if I needed to I would do it again 🙂 but that said its no walk in the park am afraid:-( so if and when your Mum has the transplant you will be more aware of it.

What treatment is your Mum having/had so far?

One more bit of advice so far will be Take one day at a time and get your Mum to rest when her body tells her to slow down. (and you also Nadine)

Love

Tom "Onwards and Upwards" xx

[DebsParticipant]

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

[NadineParticipant]

Hi Tom,
Many thanks in replying to my post, it made me smile to hear you referring to the 'bloke thing'-guess some things never change whatever the situ!.

Mum's treatment has been CDT so far but she's now only on the DT (if that makes sense).

I'll definately take on board what you say about taking one day at a time and I appreciate everyone's different but I guess I just don't know what to expect and what questions I should be asking.

Great to hear you had yours back in Dec 09 and you're doing fine 😀

Will keep you posted and will certainly be checking in regularly 🙂
xx

[NadineParticipant]

Hi Debs,

Thanks for your reply, it was really encouraging. I guess I,ve found it hard to discuss with mum as I've wanted to her to see me as being 'strong' and not scared-silly I know!. I've thought if I go to pieces I won't be any use to her so it's been a bit of a vicious circle really:-/ .

I must admit since reading many of the positive posts and experiences on here has given me the confidence in talking to her about the SCT.

Hearing your experience of the process has made me think of things such as sucking ice and having your naps. I'll have to remind her of this and the need to take it easy!.

How are you feeling now Debs and are you glad you had it done?, were you on any other treatment prior to this and was it your first choice?

Sorry for asking so many questions!
x

[tomParticipant]

Hi Nadine

Your more than welcome, and if it made you smile:-D half of my job has been done today

Yes I also was on CDT :-S all those pills :-/ but hey ho it made me better.

Love to your Mum

Tom "Onwards and Upwards" xx

[NadineParticipant]

Thanks Tom 😀
xx

[gina45Participant]

Hi Nadine, sorry you have had to join the site, but you will get lots of support from these lovely people. My mum is now 71 and has had mm since 2009. At the moment mum is on revlimid, but she has had the cdt. She cant have the sct but we are hoping that this treatment helps. I hope that your mum is ok,please keep us posted on how she and you are doing.
Gina xx

[DebsParticipant]

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

[mhnevillParticipant]

Hi Nadine

I'm sorry to have to welcome you to this site on behalf of your Mum. I am sorry for all the shock you and your Mum must be suffering from.

As someone a bit nearer your Mum's age, I'm 66yrs, may I put a slightly different perspective on things.

I gather that there are indications from tests that show whether results of SCT and other treatments are likely to be more or less successful in terms of remission period and overall survival. As SCT is a very debilitating procedure, because of the high dose of chemotherepy needed to kill off the MM, and it takes a long period to re-couperate, it is worth finding out what response your Mum's consultant would hope for. You need to be sure that you are not giving up the possibility of reasonable quality of life for the next 9/12 months without a strong hope of gaining many more months of remission.

At your Mum's age, because there are now very effective new treatments the question needs to be asked, particularly if she has any other health problems either seperate, or because of MM.

Of course, if your Mum is otherwise very fit, and the Consultant is very optomistic of a very good outcome, all the demands of SCT are no doubt worth it. For myself, I'm not keen to go down that road. As your Mum's team seem keen to take her down this road, presumably their answer to your question about outcomes will be re-assuring.

All very best wishes.

Mavis

[CarolBradley1Participant]

Hi Nadine
Welcome – although like everyone else I´m sorry that you have had to join us. Do you think your mum would be able to manage joining the site now that you are finding your way around? I suppose we mums always want to be strong for our children and I know that I am guilty of that – but here on this site I can be honest about how I am feeling without worrying about burdening fellow sufferers as they understand so well and are a wonderful support. Also, it´s quite helpful to talk to people similar in age and same stage of the myeloma ·journey" and how they are doing and handling things – what questions to ask regarding treatments etc.and other peoples experiences and what to expect.
Your mum may well be very frightend and doesn´t want to admit it even to herself (I know I didn´t having been a coper all my adult life). I know that I am not keen on letting my children and grandchildren see me when I am having a bad time of it as I don´t want to worry and upset them which I suppose is silly but there you are.
I think you are proving to be a smashing support for your mum – just getting onto this site shows how determined you are to help her as much as you can so please take time to look after yourself too won´t you?
Best wishes to you both, especially during the run up to and during the cell stem transplant process. It can be a rocky road and your mum is really lucky to have a loving and caring daughter such as you.
Love Carol xxx

[eveParticipant]

Hi Nadine
Welcome to this site,I am sure you will find all the support and answers you need to help your mum with her illness.
As a carer and a mum,myself I try not to worry my children about my husband as my way of thinking is our lives have been put on hold,and i do not want my daughters lives to be put on hold,
I do not want them to be worry about us all the time,its important that life goes on as normal as possible:-)
If and when drastic things happen ,My daughters and son-in-laws,were there,otherwise we try to take a day at a time,and do not talk about it,unless I feel the need. hope this helps Eve

[NadineParticipant]

Apolgies for the delay in my reply!,

Thanks so much for your reply, really does feel like there's a whole different world out there and and I'm just getting to grips with it!.

Since my last post we've decided to go on a holiday before mum starts her treatment, must say am really looking forward to spending time with her and my daughter but haven't yet been able to find an insurance co. for her. Have you any ideas?

Thanks
xx

[NadineParticipant]

Hello Mavis,
Many thanks for your reply to my original post, apologies in delay in my response!,

I did take on board what you said in your reply and some of the things you said echoed some of my anxieties. I called the hospital and spoke to the specialist nurse who I felt was rather defensive but I'm not sure if it's because of my profession that I felt particularly sensitive?.

I asked if mum had been given all info as well as other procedures that could be considered. I was told in no uncertain terms they would not have gone 'blindly' into this decision and basically mum has capacity in her choice!……HELP!

I feel that i'm struggling to hold things together but unsure if I'm over-reacting to the SCT?

Will really appreciate your honest comments!

On a positive note we're going on a family holiday next week although haven't yet found an insurance comp.

Hope things are ok with your mum?

Nadine

[NadineParticipant]

Hi Debs,
How you doing?, hope things are o.k and you're feeling good?. Have been meaning to respond but have not had the chance to take the time to reply to the kind messages.

Hope you won't mind me emailing you-but I will! not expecting you to have all the answers but at least point me in the right direction!

xx

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