Myeloma - anyone else with triple hit/high risk

Recent diagnosis
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Hi my husband was diagnosed with myeloma while in hospital a few weeks ago. He had his second chemo yesterday (DVDT with thalidomide). He has 70% plasma cell burden and 3 high risk cytogenetics (known as triple hit). He has lesions and bone compressions in his spine, very painful. He is 47 and we have 2 young kids. Was wondering if anyone has had similar and has beaten this? Thanks

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Oh, @MumOfTwoBoys I am so glad that you have found us, welcome.
It sounds as if you and your husband have had a lot going on in the last few weeks.
I did not realise the shock I had when I was diagnosed, with a different blood cancer, so really look after yourselves and I dealt with my diagnosis very differently to my husband.
My mind went to the ‘what if’s’, ‘why us’ etc
I know this is very difficult but perhaps try to keep it in the day, that is as much as I can cope with.
How are your young kids, I ask because in my experiences children pick up on things and often put 2 & 2 together and make 5?
The Blood Cancer UK nurse support line is there for you on 0808 2080 888.
The Blood Cancer UK website is also there for you.
Please look after yourself as well as I expect you are looking after everyone else.
I hope others will be able to share their experiences for you.
Please do keep posting, we are here for you so you can say how it really is for you.

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Hi there

Here’s a link from myeloma uk

Here’s a link to Martin Kaiser his particular focus is high risk

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Thank you :blush:.
The boys are fully aware their Dad has cancer, it was the first question they asked. My own dad has been in remission from stage 4 non-Hodgkins lymphoma for 3 years so they have had a “good” experience with cancer.
My eldest is avoiding us (teenager!) and my youngest is clingy and very very caring of his dad.
I am totally taking this one day at a time but I also like to know everything and plan ahead. It helps me cope.
My husband is different, he prefers not to know all the details so what he does know is limited to “cancer” and “treatment” :rofl:

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Thank you that’s interesting. I will look into it.

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@MumOfTwoBoys , sorry to hear about your husband’s diagnosis. Me and me family are in a similar situation. I’m 50, and have been diagnosed recently with triple mutation myeloma with several bone lesions and pain. Ive had my second week of chemotherapy today and I’ve been placed on the Daratumumab, Dexamethasone, Venalidomde and dexamethasone induction. Looking at the study that has been posted I will ask about Cyclophosphamide.
Emotionally it’s been hard for us. But we are determined to get through this (we have two boys also 17 & 13)..
We are based in Australia.
I hope your husband’s chemotherapy goes well and he makes a full recovery.

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Hi @Tash welcome to our UK support forum.
As you are in Australia treatment regimes and available treatments might vary country to country.
As you say emotionally it has been hard for you all and I think many of us share similar thoughts and feelings and probably practicalities.
Look after yourselves and thanks for letting us know about you

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Hi Tash, how are you doing? How did the dvdt go?

My husband had his intial therapy which went well. He is now having cyclophosphamide as a primer for a stem cell transplant in a few weeks. Unfortunately he has to have a second set of apheresis (stem cell harvesting) as his body didn’t produce enough stem cells for collection. This is in the next few weeks.

Just wondering how you are doing and how your kiddos are managing?

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Hi @MumOfTwoBoys,

Thank you for thinking of us :slightly_smiling_face:.

I am glad that your husband’s initial chemotherapy has gone well. Sorry that they are struggling to get stem cells. However, it is not uncommon to have more than one stem cell collection day. l am few weeks ahead of your husband in terms of therapy and am currently in hospital for my stem cell transplant which will be tomorrow. I have just received my Melphalan today. Now, it’s a waiting game.

The initial chemotherapy (Dara,Velcade, Revlimid, Dexamethasone) put me in partial remission.

With regard to stem cell collection, I had a very similar experience. My stem cell collection took 3 days. My hematologist thinks that it may have been a Combination of the Daratumumab and some radiotherapy that I required for bone lesions early on that may have suppressed my bone marrow. At the hospital I went to, they did the stem cell collection on consecutive days. They also doubled my dose of GCSF (called Filgrastim here) and after the first day added another medication called Prelixafor, which also helps get the stem cells into the bloodstream. They finally got enough after the third go. I then had one more cycle of chemotherapy (which made no further difference to my paraprotein level).

With regard to our teenage boys, we have always been up front about the treatment and its effects. They do take the information in but don’t ask loads of questions or talk much about it. Our older son is currently giving his year 12 exams so he has a lot on his plate.

I think just them asking occasionally is a sign that they are processing the information in their own way. I can tell that they worry about me but they just express it in different ways.

One thing that I can say is that my wife has been an absolute Rock for all of us through this process. She has maintained a positive attitude towards recovery and has encouraged me to continue my day-to-day life as I was doing before the diagnosis with some modifications. She has also had to take on additional responsibilities looking after all of us. It looks like you take very much a similar role and I am sure your husband and boys appreciate this in their own ways.

In all of this, it is very important to look after yourself and give yourself that time and permission to spend some time in doing things for you. Talking to your friends and meeting can help a lot.

I hope the rest of your husband’s treatment goes well and he continues to respond well.

Take care.

Tash

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Hi @Tash I just wanted to say I will be thinking of you having your stem cell transplant tomorrow.

Please do keep us posted when you can.

Really look after and be ever so kind to yourself

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Hi Tash, best of luck for tomorrow. Thinking of you and your family.

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