[beamingParticipant]

Hello all

My husband was diagnosed in feb with Multiple Myeloma.
He has been told he is high risk and Igd which apparently is very rare.
He is due to have a tandem stem cell transplant in the next couple of months.
My question is are they’re any people also with the same type.
Thank you .

[rabbitParticipant]

Hi Beaming and welcome to the forum.

Igd myeloma is indeed rare: around 1 to 2 percent of cases.

You may therefore not get many (any?) responses, so I thought it worth sticking my nose in!

A tandem stem cell transplant is unusual. Could you please tell me:
– How old your husband is?
– In what way he is high risk (for example, I have t(4, 14) and +1q chromosomal abnormalities which nake me high risk)?

Regards
Rabbit
Diagnosed 2022, still in remission

[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 😊

[rabbitParticipant]

Hi Beaming,

I won’t give you false hope, but when I was diagnosed, my prognosis was not great, but I am doing far better than expected. Meanwhile, so many new treatments have been approved and are in development.

If he can maintain as healthy a lifestyle as possible, that can help. However, no pressure in terms of diet or exercise during treatment, as that can be difficult or simply impossible (voice of experience here, even without having had a transplant 😀).

Regards
Rabbit

[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?

[rabbitParticipant]

Hi Beaming,

I am cheating by copying and posting from another post that I did a few minutes ago 😀

You asked about why I didn’t have a transplant. It wasn’t my age: I am still in my fifties, which is plenty young enough. A couple of years before, I was diagnosed with a dodgy heart. It’s genetic, I have had a healthy lifestyle for decades. My cardiologist and my haemotologist discussed me and agreed that the transplant would put strain on my heart.

In addition, as chemotherapy has been improving, the advantage of a stem cell transplant are less than it used to be. However, it is still the standard UK approach.

Regards
James
PS I was still offered a transplant if I had really wanted one. However, after a few months of reading up on medical papers (I am a science geek so used that background to learn a whole new vocabulary 😀) I agreed with the reasoning, risk/reward etc. My stem cells were collected and are on ice somewhere.

[najmahParticipant]

Hi Beaming, sorry to hear about your husband, especially with his myeloma being one of the rare ones. I can’t add anything as mine is IgA K so the second most common one. I was diagnosed in April and have had 3 treatment sessions that have all gone well. I’m on Isa VRD treatment and cant have a transplant due to my age (73).

I hope all goes well with his treatment and the tandem transplants are successful, I’d never heard of them before so had to google!

[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 .
😊

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