[TinaPParticipant]

Hi. I've been newly diagnosed with MM and have been offered SCT. This is a daunting prospect and I am feeling very aprehensive. Has anyone any advice. I have been invited to take part in a Clinical Trial.
Thanks.

[tomParticipant]

Hi Tina

A Warm Welcome to the site and I hope your road to remission is a good one.

I had my SCT in December 2009 and am still in remission and doing pretty good.

Keep us posted and ask away

Love Tom "Onwards and Upwards" xxx

[mhnevillParticipant]

Hi Tina

A welcome to the Site from me too – sorry you have had to join us. Perhaps you could give us a bit more information on how you got to the point of diagnosis: there are so many routes, as you will find out!

Lots of folk on here have has SCT and can give advice. Also, Trials give access to the latest thinking and very close monitoring. Do you know what Trial is being suggested?

You will have so much to take in. Age has some effect about treatment offered. Are you young?

Very best wishes to you. Do keep in touch.

Mavis

[eveParticipant]

Hi Tina
As Mavis says there are lots of trials and treatments.
my husband is on MX1 trial,but trial or no trial some were along the treatment you will get the offer of SCT if you are fit,but that is usually way down the line.

You need to find out all the information about the trial offered and if you need some answers from the patient or carers point of view,then I am sure you will find people on this site will answer your points. Eve

[CarolBradley1Participant]

Hi Tina
So sorry that we are meeting because of your bad news you must be reeling at the moment. At least you have come to the right place for some support – ask anything at all as anything that worries you is important.
I had my SCT in Feb of 2011 and although my recovery has been slower than I would have liked I am sure that is because I am a bit older than some (57) and like to ride my horses and lead the outdoor life so notice it when I´m just not up to that.
Overall the SCT has been a great success and to date has knocked the MM for six so I am enjoying life every day as best I can. Hope it encourages you to know that today I rode one of our horses for a short while – something that I never thought I would be able to do again.
Hope you have a good support team and that you are feeling a bit better soon.
If it helps I was on the Myeloma 11 trial and found that I was monitored a lot more closely than those that were not on it which meant that any problems seemed to be picked up more quickly although I did have to have more blood tests etc. Any specific quiestions please do ask.
Thinking of you.
Love Carol xx

[TinaPParticipant]

Hi Carol, I will be on the Myeloma 11 trial.I can't start for 4 weeks as I had shoulder surgery on the 2nd Feb. I am 63, so a little bit older than you. But I'm ready to put up a fight!Its the side effects and hair loss that worry me. How did you cope?
Love Tina. xxx

[CarolBradley1Participant]

Hi Tina
Glad your going on the trial as you will be monitored really well and the medications used seem to be having a good impact on the MM for most people.
Regarding the side effects of the treatment and SCT – well, like you I was really worried about the hair loss all the time up until the SCT – my poor husband spent a BOMB on having a wig matched exactly to my own hair of the time (in the photo). The truth is that having come through the SCT successfully I wore the wig exactly four times as it irritated me (nothing to do with the quality just we had horses who kept nuzzling it so I had to keep changing to a hat which was a fiddle). Anyway, the truth is that I was so glad to be home again and on the mend the last thing I was bothered about was the hair thing. You could be different to me but also, I was so tired the last thing on my mind was that – anyway the turbans were really much more cosey during the cold months and looked quite smart until it grew back. The only wig I did get a lot of use out of in the early months was a very short cheap thing I bought in the local market which was far more comfortable than the really expensive one or the national health one! In short, worry about looking after yourself and trying to remember to face things one step at a time instead of looking too far ahead. It helped me to practice going to a "nice" place inside my head – memories of happy times, my lovely supportive husband, children when small, a good mum and dad, riding my horses and sailing our boat. In fact, it was a bit like playing a little film back in my head of happy memories. I got quite good at this and whilst I was in isolation after the SCT I would decide which "film" to watch when I had a few quite hours to fill until visiting time care around.
You take good care of yourself in the lead up to the SCT because the fitter you go in the fitter you will come out! Even if you can only do gentle walks on the flat it does help a bit. You sound really brave and positive and I know your going to come out the other side well but don´t be too disappointed if there are days when you wonder if you will ever have any energy againa! – Don´t worry, you will. As I write I am on holiday, sat at our little farm here in Spain planning to ride a horse today and varnish the front door if I have enough energy left and planning what I would like to achieve in the garden this spring when I get home. Hope that gives you some reasurance that the SCT will be worth all the preparation and side effects.
Ask anything you like – that´s what this site is for. Also, I found it really helped to talk to people who really understood my worries, fears amd frustrations – I could let off steam to them and it wasnt personal – I always worried to say too much to family and friends in case I worried and upset them – here people are keen to help but not so personally involved as they don´t know you that well.
Sorry if I have rambled on – thinking of you and wishing you the best with your shoulder operation. When you feel up to it let us know how you are will you?
Love Carol xxx

[mhnevillParticipant]

Hi Tina

Sure you will have found all contributions helpful. Aren't they a lovely bunch on here!

Hi Carol

So glad your good phase continues, I found your comments about wigs really helpful because it is something I have worred about, even though it is, hopefully, a long way down the line.

Enjoy your riding and hope you get that door varnished!

Love

Mavis x

[CAZ1Participant]

Hi Tina and everyone
Sorry you had to join the 'merry' band of dancers with Myeloma, but hope you find,like me,that the support through the discussion group is invaluable.
I start the build-up to Stem Cell collection this Friday coming,with planned admission, fingers crossed, for SCT on either 10th or 16th April. The good news is that,if everything can be achieved, I.e. Good stem cell collection, all the tests are done, and I manage to have a consultation with the transplant team , I'm being allowed to spend a week at our house in Spain before the transplant-something I thought I wouldn't be able to do until the Autumn at the earliest ! So,it shows that there are treats out there can make this illness copable with. Keep positive and keep looking forward.
Good luck
Carol Z

[adamsp41Participant]

Hi Tina…welcome to the site…I hope all goes well with your SCT and recovery is swift…I had SCT in Jan 2011 and am now in Stringent Complete Remission…although I experienced a "bumpy" ride a lot of people seem to cope a lot better…it is all down to the individual …each person's myeloma treatment seems to differ…I too am on the myeloma x1 trial and am monitored (depending on my blood results)every 2 or 4 weeks and at the moment I am doing ok…the only problem is fatigue which is a common side effect …any other queries feel free to post…stay safe…Phil 🙂

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