[beamingParticipant]

Hi greenlarry

Igd is a very rare form of Multiple Myeloma with only a couple of cases a year.
It is the same as any other Myeloma like Iga ( most common ) except it is far more aggressive in its return.

[beamingParticipant]

Hi David
Thank you for you message.
It was very reassuring to hear about your experience of SCT.
Can I ask how is your spine and pelvis after the SCT? and are you in remission now?
My husband has lesions on his ribs and spine but to much pain after DVTD.

I agree with you about the care at Southampton, my husband spent 2 weeks in C4 ward as his kidneys were only functioning at 5% when he was diagnosed.

It can seem very daunting hearing what is to come but hearing from people like yourself helps enormously.

Thank you and I wish you many blessings going forward.

[beamingParticipant]

Hi Nicolac
Sorry to hear about your father and uncle.
Like you my husband has responded very well to DVTD and has managed to carry on working.

We are based on the isle of wight but have to travel to Southampton for pre tests and the tandem SCT.

He is due to go this week for lung function tests etc and the end of the month priming and Harvesting, ready for first transplant in July.

He has been told by the consultant that he has 3 genetic mutations which makes him very high risk.
Happy to keep in touch throughout, will pass your details onto Ben so he can directly message you.

Good luck for your journey. 🙏

[beamingParticipant]

Hello Najmah

Thank you for your kind message.
I think everyone has their own battles with Myeloma.
Having a tandem transplant is something we had not heard of either and yet to come across anyone who has had it done.
We are keeping positive and taking and enjoying one day at a time.
Hearing so many people exceeding way past their prognosis gives us hope.
Glad your treatment is going in the right direction .
😊

[beamingParticipant]

Hi Rabbit

That’s good to hear you are doing well 😊

May I ask what is your MM story and why you were not offered a transplant?

[beamingParticipant]

Good evening Rabbit

Thank you for your message

I understand that this type is every rare and might not hear of anyone else having the same.
My husband had just turned 60yrs when he was diagnosed in February this year.

We were told a tandem transplant will give a longer and deeper remission.
Which could still only be 3yr to 4yr, nobody really knows.
He is due to have the first one end of July with a three month break before the next one in October.
I can only tell you that he has light chains only and his chromosome instead of being a Y is shaped like a death rune.
Sorry not very technical 😊

[Author]

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