[archieParticipant]

Hi everyone – I'm wondering if someone out there can help/talk with me re John my husband – he has recetly been diagnosed with Bence Jones myeloma – in August 2012 John had a hip replacement which was a success – September John had a heart attack – was taken to hospital – unfortunately they were unable to do a Bypass as the heart was too fragile – so stents were inserted – John is on Velcade(injection in the stomach)and is seeing the consultant this Monday -we are both struggling to come to terms with this -I'm hoping someone can explain a little bit about it to me as I don't fully understand – thanks for reading.

Regards Heather

[teds31Participant]

Hi Heather, I'm Ted and I have whats known as Smoldering Myeloma, no symptoms and no treatment as yet, I am really sorry that you both find your selves here on this site,but on the other hand you will get good advise here and also support.
I dont have any practical advice but some one will be along very shortly with some help, as there are people who have gone through your problems and medically trained persons so keep looking and I hope you wont wait long. Good luck. Ted

[tomParticipant]

Hi Heather and John

Sorry you had to join us but a warm welcome to you both.
I cant help you out on this as I have just had CDT then SCT in 2009.

Am sure some one will be on that has or is having that treatment.

Where is John getting his treatment?

Good Luck in the road to remission.

Tom Onwards and Upwards xx

[eveParticipant]

hi Heather

it is a bit mind blowing when you join this club,lots of information to take in,it,s a learning curve,try not to worry ,you will in time learn all the jargon,and will become an expert on your husbands condition.

my advise is get in touch with Ellen she can put you in touch with someone who you can talk on the phone so you do not feel so alone.

Velcade is a good treatment and it is having good results,my husband had it as second line treatment,then SCT and is in remission,we met people in there 80 on Velcade all doing well and keeping the Myeloma controlled.

We have just got back from NZ,so there is life after being diagnosed with Myeloma.
Make sure your husband drinks plenty of fluid,as much as possible report all symptoms,get a note book and make notes,it all helps. Eve

[archieParticipant]

Hi Ted

Thanks so much for your message and support – it really helps knowing there are people here willing to help – sorry but I have no idea what
kind of myleoma you have Ted, but wish you luck –

Regards Heather

[VickiParticipant]

Hi heather,

Welcome. My partner Colin was diagnosed in October 2011, it was like a miserable bolt out of the blue! And like you we were shocked to the core. However he has had several months of revlimid, cyclophosmahide and dexamethasone resulting in a stem cell transplant this last October 2012. He has been out of hospital nearly 6 weeks and all I doing quite well. I won't pretend if was easy for either of us, me the supporter and Colin the patient. That said we have got to where we are and it's doable! As eve said there is life after diagnosis, but just follow the rules, and listen to what the medics say! Best of luck 🙁

Hope you had a great time eve and slim 🙂

Vicki and Colin x

[archieParticipant]

Hi Tom

Thanks for your message and words of encouragement – John is an outpatient and is having his treatment twice a week at St.Georges Hospital,London – The staff there are great –

We are seeing the Consultant Monday – will let you know how things are going.

As mentioned to Ted- I have no idea what kind of Myeloma you have but good luck.

Regards Heather x

[archieParticipant]

Hi Eve

Thanks for your words of encouragement Eve- don't feel so alone knowing there are other people like John and I –

Will ring Ellen when we have seen the consultant on Monday – have done as you suggested – made a note of the symptoms – also making sure John drinks lots of fluids.- will keep in touch and thsnks again.

Regards Heather

[archieParticipant]

Hi Vicki

Thanks for your advice and encouragement – it nice to know that there are people on this site that are so understanding.

John and I are both nervous as to what the consusltant is going to tell us on Monday.

Although I do not know anything about Colin's problem – it seems that you have both struggled for some time but hopefully things are now under controlled – good luck to you both –

Will keep in touch

Regards Heather x

[GillParticipant]

Hi Heather

One more tip take a pad and pen when you visit the consultant. Even with 2 of you listening carfully it is easy to not remember it all

Godd Luck Gill

[tomParticipant]

Hi Heather
Your Welcome, I am not sure which I have I am just pleased my consultant knows he he.
Love Tom Onwards and Upwards xxx

[mhnevillParticipant]

Hi Heather

Welcome to you and John from me too. I do hope you got on well with the Consiltant yesterday and understood what he was saying. You obviously have a lot to cope with as well as a lot to contend with. This is a strange illness to come to terms with.

Like John my myeloma was diagnosed after lots of treatment for arthritis. I have had four hip operations! Arthritis pain can act to mask MM pain.

I haven't had Velcade, just one successful series of treatment with the usual chemo regime (CDT). However, for those on it, who can get along with it, it seems to be doing good. Do hope this is the case with John.

One of the problems with Myeloma can be continued back pain. If John has it, make sure he sees the Pain Team to get the best advice.

I wass diagnosed in 2010. Life goes on!!!

All best wishes.

Mavis

[archieParticipant]

Hi Mavis

Thanks for your advice re back pain – fingers crossed at the moment John hasn't any back pain-but will certainly bear the Pain Clinic in mind – meeting with consultant went ok – John has started his second cycle of Velcade today –

How are you coping after your hip operations – glad your myeloma treatment been successful- do you still go to the hospital for checkups?

Regards Heather

[HelenRParticipant]

Hi Heather,
Just a quick hello as I'm also at St George's (though now just for check ups, I've finished treatment). I wanted to tell you that I've been very happy with my care there. I had velcade as part of my treatment although I guess overall it may not be the same regimen. They are also incredibly friendly and helpful on the daycare unit, as I'm sure you've found. I'll be in on 28th and 30th January, so let me know if you happen to be around on those days and want to chat. Or just send me a message if you ever have any queries/concerns about St George's experiences that I might be able to help with!!
Helen

[archieParticipant]

Hi Helen

Thanks for your message -John too finds the staff at the Daycare Unit- St.Georges very helpful and friendly – it's our 'free week' this week -but thanks for the offer of meeting up. – hope all goes well for you.

Regards Heather

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