[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 .
😊

[nicolacParticipant]

Hi Beaming,

I was diagnosed with MM in November and advised that I have 2 genetic mutations that make me high risk. I finished DVTD treatment in early May and also have a tandem stem cell transplant as the plan starting next week at the freeman in Newcastle.

I was definitely taken aback when that was proposed as I had not read much about it and thought it to be unusual.

I was 46 when diagnosed and my father who is sadly no longer with us was 76 when he received his diagnosis. My Uncle was diagnosed at the same time as me at the age of 84 so I think we can definitely say there is familial risk for us.

It seems your husband and I will be on similar timescales with our tandem transplants so I will be interested to hear about his progress and will be happy to share my experience too.

At the moment, I am trying to mentally prepare as I feel like I have a mountain to climb. I coped very well with 4 months of DVTD, I managed to work throughout and never missed a school run. I know this next stage will be different but I am approaching it with a strong mindset and positivity!

[najmahParticipant]

Hi Nicolac,
I just wanted to say hello. My treatment is also being carried out at the Freeman in Newcastle. I have found them so far to be excellent. I can’t have a stem cell transplant because I’m 73. Im receiving Isa-RVD and have just completed my first cycle. So I’m at the Freeman every Tuesday. There’s certainly a familial risk for you as there is for me as my mum died from it 25 years ago, only 10 months after her diagnosis.

Good luck with your tandem stem cell transplant, hope everything goes well.

[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. 🙏

[david49Participant]

Hi Beaming
Sorry to hear your husband has had this diagnosis. It’s always difficult to get such a diagnosis and the treatment plan seems daunting.
I was diagnosed with a high risk myeloma in October 22 when I was 73. It took a few weeks to reach a diagnosis and I required radiotherapy on spine and pelvis lesions before myeloma treatment started. After initial treatment I had the first of my ASCT in June 23 and the second, tandem treatment in November 23.
The treatment was not as bad as I feared and if anything the second round involved milder side effects than the first.
I also had my treatment in Southampton before transferring to Salisbury for isolation. The staff at Southampton are excellent and are the very best. Your husband will be in very safe hands and will get the very best and latest treatment.
Good luck and best wishes to you both.
David.

[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.

[david49Participant]

Good morning Beaming
I have been in remission for 2 years now, on a maintenance of Dara and Lenalidomide.
There has been good resolution of bone lesions. I had a major reconstruction of right hip and there has always been some pain from that and spine, especially when tired.
But life is very good. We have been on a few foreign trips, we manage to eat out and have a good social life. I realise there will be a relapse eventually but making the most of the current situation.
I just took the treatment one step at a time and followed the excellent advice from the medical team.
Best wishes
David
Sent from my iPhone

[greenlarryParticipant]

What is Igd?

[Author]

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