[LollyParticipant]

Hello All,

I am a carer for my husband Steve who was diagnosed in March this year with MM. Steve is 52 yr, and was suffereing from what we thought was really bad pulled muscles, but were in fact tumours on his spine. What a massive shock, still not sure we have fully taken it all in.
Steve had 5 sessions of radiotherapy first. He then went on the trail, and has completed 4 cycles of chemo. He is now waiting for the phase i.e. SCT. He is booked into the Kings College Hospital in London this October.

I would love any advice and to share any knowledge from you all.

Love Lolly

[jmsmythParticipant]

Hi Lolly and welcome to the forum. Sorry you have to be here but you are in the right place. My hubby was diagnosed in 2006 and went through SCT in March. Was a bit of a rough ride at times but he got through it and bloods show no detectable protein and PET scan showed no cancer. We are off on a cruise on 13 Sept – first holiday in 2 years 🙂

They are a great friendly bunch and will be there for you for help, advice, info and to listen to you if you want to rant. Just come on and ask – someone will come along that will be of help to,you

Best wishes to Steve and take care of yourself
Love Jean

[andygParticipant]

Hi Lolly
Welcome to the forum no one wants to really be apart of. You'll find lots of support and friendly advice here.
I myself have the dreaded MM disease I was diagnosed in Oct 2011 after 18 months of back pain! I'm 55 now. Sadly my treatment hasn't been straight forward and will not get to SCT so can offer no personal insight into the process so I will leave that to others.
I hope you and Steve have a smooth journey with MM and a successful SCT followed by a long remission.

Every day is a gift.
Go out and enjoy it.

Andy xx

[LollyParticipant]

Hi Andy, thank you for your message. Did you do the trial? I wanted Steve to have a second option at The Royal Marsden, but he could not face the travelling when he was first diagnosed. Which hospital are you under?

Have you been on the drug Lenalidomide (Revlimid) ?

Lolly x

[andygParticipant]

Morning Lolly
I was offered a trial when first diagnosed but I can't recall which trial it was now. I turned it down because it meant traveling to a hospital further away. I'm being treated at North Tees University hospital Stockton which is only 10 mins from where I live.
I started on CDT( cyclophosphamide, Dex and thalidomide) and had 5 cycles to no avail then I tried PAD ( Velcade ) again no significant response then it was on to DTPace again no significant response. My next treatment was Revlimid and Dex and I was referred to Newcastles Freeman hospital for a second opinion where I saw Prof. Jackson an Auto(self) SCT was ruled out and an Allo(donor) SCT suggested but a good enough match could not be found so that has been ruled out too. Cyclophosphamide was added to my Revlimid and Dex which has managed to bring my PPs down to 20 where they have been for several months now. I started with PPs of 49.
I'm on cycle 19 of RCD at the moment and will stay on it till it stops working.

Every days a gift
Gratefully received

Andy xx

[tomParticipant]

Hi Lolly and Steve

Well a warm welcome to you both and good Luck on your road to remission, its a bumpy one at times but a doable one.

I was diagnosed in 2009, had CTD as a first line then SCT Dec 2009 and I sit here in remission and drug free 😎

Catcha later

Love to you Both
Tom Onwards and Upwards x

[eveParticipant]

Hi Lolly

Well the first thing you can see,is everyone is different,the drugs effect people in different ways,so you cannot comper people.

These are some of the things no one told us.,what type of myeloma my husband had : IgG knapper light chain
Staging : some say no staging others say yes we stage it

My advice is if you do not have a booklet on Myeloma down load one from here or better still contact Ellen or Maggie on free number,they can help you,learn all you can,takes time getting use to medical jargon,we have all been there ,it will help you both on your journey.

I took my husband for blood early today 2 hr befor appointment because his nuetraphils were only 0.3 so it's important I keep him away from sick people(. Makes you laugh sick people go to hospital ) sorry I have a black sense of humour,.anyway got them done,then home. Learn how to read blood results,ask questions,you are the carer.it will help you on this roller coaster ride,welcome to the site.Eve

[barbhParticipant]

Hi Lolly,

I am new to this forum too. I am also a carer. Information is definitely the key and make sure you ask if you are not sure about something. Husband diagnosed 3 years ago. He had 6 month CDT, then SCT in July 2011 The hardest part he found with the SCT was the isolation but fortunately no severe side effects and was back in work 5 months later.

Unfortunately it is now back and he has just started on Velcade, however as Eve said you can't compare people as Tom is still in remission nearly 4 years later.

All the very best to you both & welcome to the site

Barbara

[VickiParticipant]

Hi lolly

Welcome if that's the right word! I am my Colin's supporter, he has mm diagnosed October 2011, bolt out of the blue and totaly shocked!. But he had 7 cycles of cdt, then sct in November 2012. In complete remission at the moment :-). I ask millions of questions and let nothing go…..however I remember Helen posting on here once to say that sometimes the sufferer might not want to know or make their own choices! It made me think, so it's a real joint effort!

Best of luck, it's a long hard journey but do-able :0)

Vicki and Colin xx

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