[paulcjwParticipant]

Hi all

I am new on here. My husband had smouldering myeloma for 5 years that has progressed very recently and aggressively in the last 3 months. He was scheduled for the normal first line chemo treatment starting next week but we have just had a call to say they cannot do this due to high levels of cytogenics. They are going to discuss a trial with my husband this week. This is very scary and reading the internet ( I know know the best!) this is not a good prognosis. He is only 51. Has anyone been in this position?

[rabbitParticipant]

Hi paulcjw,

Welcome to the forum.

I can understand your worries. Please bear in mind that a lot of material online relating to myeloma is old: treatments have been improving, as indicated by the possibility of your husband having a trial – in other words new – treatment. Therefore the situation may not be as adverse as you have read.

As you have probably read, about 25% of patients have cytogenetic abnormailities: I am one of them. Could you please provide more detail on your husband’s cytogenetics, as there are many different kinds? For example, mine are t (4, 14) and +1q.

Regards
Rabbit

[paulcjwParticipant]

Hi

Thanks for your reply. Sorry for the late response I was waiting until we had his appointment. He is now classed as ultra high risk as he has 2 high risk – gaining of 1q and FDFR which when I have looked is t 4,14, so it sounds very similar. He starts the RADAR trial in 2 weeks.

[rabbitParticipant]

Hi paulcjw,

I haven’t heard of FDFR before, and neither has ChatGPT.

OK, assuming that your husband and I have the same cytogenetics, I hope that I can reassure you. I was diagnosed in 2022. I didn’t have a stem cell transplant, and went into remission in June 2023.

Now, in May 2025, I am still in remission and getting on with life. Currently on holiday in Greece!

I won’t pretend that it is easy. For example, yesterday the fatigue from my maintenance chemo was pretty bad, so I didn’t go far from the hotel, but overall the holiday has gone well.

Your husband’s age helps with the prognosis, and so would a healthy lifestyle (eating healthy, exercise etc).

Happy to discuss further.

Rabbit

[paulcjwParticipant]

Sorry FGFR! When I googled it it it said 4,14 which I think is the same as you. Lovely to hear you are doing so well. I am so pleased for you and thank you for being so kind to reply to messages. Enjoy your holiday 😊

[marialParticipant]

Hi paulcjw, I also was diagnosed over 2 years with high risk cytogenetics t (11.:14) and del (17p). My treatment was induction with Dara, Lenalidomide, Velcade and Dex for 4 months before my SCT (which isn’t fun but you soon put it behind you!). I’m on maintenance now – Dara (once a month), Lenalidomide and have done lots of trips and feeling good. I’ll be celebrating my 2 year rebirth (SCT) on 21 June and just back from my monthly treatment at Royal Marsden and my Kappa Light Chains are under 6 which were at 276 when first diagnosed. It’s a very personal journey for each and every one of us but feel reassured that despite not being curable today, it is exceedingly very treatment and that’s even for high risk patients.

[paulcjwParticipant]

This is such a lovely post and I thank you from the bottom of my heart for giving even more hope. I am sending all my love to you for a very very long remission. Myeloma is treatable and that is what we all need to focus on ❤️ thanks again.

[paulcjwParticipant]

This is such a lovely post and I thank you from the bottom of my heart for giving even more hope. I am sending all my love to you for a very very long remission. Myeloma is treatable and that is what we all need to focus on ❤️ thanks again.

[paulcjwParticipant]

Hi all would just like to give you an update – my husband had his stem cell in February this year. Classed as ultra high risk cytogenetics and on the radar trial. Went to see consultant today and in remission – MRD! Elated with this news – had a Bumpy road to get to here and a long way to go yet but he’s doing so well. Looking at booking a holiday this week. Thought I would share this with everyone as all your messages gave us so much hope.

[rabbitParticipant]

Hi and thanks for the update. I am delighted that your husband is MRD negative.

An update for an update: despite being high risk, according to my blood test yesterday I am still in remission (my MRD status has never been tested – maybe it’s expensive to do). Still going on holidays and enjoying life.

I hate to sound a note of caution on holiday plans, but how strong is your husband’s immune system yet?

Two risks:
– Infection from other people. I have been told that neutrophils levels being low – especially below 1.0 – mean that the patient should keep away from crowds (though face masks can help).
– Infection from food. I have come home from holidays a couple of times with stomach bugs. Hygiene standards are critical here. My worst experience was Morocco.

All the best to you and your husband.

Regards
Rabbit

[paulcjwParticipant]

Thank you!!! Just wanted to share as this forum, and yourself, have us so much hope as an ultra high risk patient. Going to stay in a villa just the 2 of us to eliminate the risk and will wear masks on the plane. I think the last 5 years have made us realise that life is for living and to enjoy every moment. ❤️

[rabbitParticipant]

I well understand the urge to make the most of life!

The villa plan sounds good. I can be more specific given that info:
– Infection risk from people: Covid in 2020/21 showed that infection risk during flights is low. Air filtration is a key part of that. There is risk from queuing up at check in, at the gates etc, though.
– Infection risk from food: you and your husband have probably been briefed heavily on this, but just in case: caution (at best) is recommended eating out with much raw food, such as salad and sushi. My dietitian warned me on a few other things (such as raw meat and unpasteurised dairy) but most people don’t come across those much anyway.

Regards
Rabbit

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