[tonyfParticipant]

Good evening, yet another newcomer.Was diagnosed with IgG lambda myeloma recently. I am nearly 68, fit, healthy etc. I had a number of infections including pnuemonia at the end of last year and thanks to my persistent GP I find myself here. Without her insistence I would be carrying on as before, but no doubt going down with all sorts of infections. I have been accepted onto the myeloma X1 trial and I start taking the tablets tomorrow, obviously I have no idea how they will affect me, I admit to being a little worried, but I have great faith in the professionals who are treating me. Just going off to count out the tablets now…..I hope that I can speak with some of you over the coming months.

[teds31Participant]

Hi Tony ,sorry you have to join us but its a great place to get all the info, I cant help because I have smoldering myeloma which doesnt have any treatment but I'm sure some one will be along with a comment shortly. Keep posting and good luck. Ted

[PerkymiteParticipant]

Hi Tony, Welcome (?) to our little group.

I have the bog standard Myeloma but several on here have your type so I am sure they will be along to give you information support and advice shortly.

I am 69 and was diagnosed in Jul 2009, when I broke my neck getting out of bed!, I had an SCT 15 months ago and am at present fit and well.

You will find this a really helpful site, not just the forum but the site itself has load of UP TO DATE information and if that is not enough you have the MyelomaUK Nurse who is always on line to help.

I wish you the best of luck with your treatment and look forward to further posts in the future.

Kindest regards ? vasbyte

David

[tomParticipant]

Hi Tony

Welcome to[u][b] your [/b][/u]new group

I am same as David nowt special just MM 😀 CTD front line leading to SCT Dec 09 now fit (ish) and well 😀

Keep strong and this is the place when it gets a bit too much to have a moan and groan we all know what its like

Tom "Onwards and Upwards"

[eveParticipant]

Hi Tony
My husband Slim is on the Myeloma X1, he got the CTD side,because of his fitness he was on the intensive pathway.
I can only tell you to listen to your body,if you do not feel well, do not think you can cope with it,make sure you phone the hospital for advice,its a very hard call and you do not want to bother anyone,but it is very important to follow the instructions you have been given.
Slim use to think all his bad symptoms ,was the chemo,and they were not.
You will be taking so many tablets its worth making a chart,also do not be surprised if your personality changes a bit,if you have a wife she will tell you,taking bulk steroids,changes you,but does help to give you energy,to cope with the days,you feel a bit tired,taste also change,food and drink wise.:-P

The CTD did not work for Slim,so went on to Velcade and is now in remission took a year,and goes in Hospital next Monday for SCT.So it has all been worth while although at times it does wear you down.

Anyway welcome to the journey,there are a good bunch of people on here,with a wealth of experience plus a good nurse Ellen who will answer any questions.
You have an awful lot to take in,so take things a day at a time terminology will soon be second nature,hope to see you posting soon.Eve

[tonyfParticipant]

Thanks for the welcome, why is there no treatment for smoldering myeloma, and whats different? I am still getting to grips with this. thanks again.

[tonyfParticipant]

Thank you for the advice, it sounds sensible and positive.

[tonyfParticipant]

Thank you, I intend to keep strong, guess there will be days when I am down
appreciate any advice.

[tonyfParticipant]

Thanks for the welcome and the reply, I have found the whole site interesting, no doubt will be using it a lot in the future

[tonyfParticipant]

Thanks for the reply and the welcome to the group, thought I was alone out there for a while, so appreciate the contact

[teds31Participant]

Hi Tony,You must be on the tablets now how did it go,hope you are OK.Smoldering Myeloma is when you have the problem in your blood sample but no symptoms,which makes me very lucky, I've been like this for 5yrs and thats about as long as most people go with Smoldering MM so got my fingers crossed.Like you I have faith in my doctors and just keep going ,its strange but most people dont mention it and I forget except when the appointment letter arrives. Well keep in touch and I see several of us have been in touch and I'm sure they will answer any any queries you may have.Ted

[jmsmythParticipant]

Hi Ted
Frank has been nearly 6 years SMM. going on Thursday to see consultant on Thursday and I'm dreading it. Feel like "we have got away wiih it for such a long time". Just pray God is good and Frank is still stable. My best wishes to you Ted and a welcome to you Tony you are in the best pace for support

Love Jean xx

[tonyfParticipant]

hi Ted, first day with the tablets, I think it was 34 early this morning and one this evening. Less tomorrow. Touch wood , no side effects, I took my dog for a 1 1/2 hour walk in the country this morning, admit to falling asleep in the chair during the 10 oclock news, but thats nothing new. thanks for explaining smoldering myeloma, I hope you just continue as you are. My local hospital is the Leicester Royal Infirmary, everyone from the receptionists up are really good, I have great faith in them all. thanks for the response, Tony

[tonyfParticipant]

Jean, thanks for the reply, nice to have support from folk who are going through the same difficulties. wish you the best of luck for Thursday, be positive,Tony

[DaiCroParticipant]

Hi Tony,

I am sorry that you are here… but now that you are you might as well make the best of it.:-|

Looking forward to getting to know you.:-)

Regards

Dai.

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