Returning myeloma for my dad

Evening, my 82 year old was diagnosed with multiple myeloma 3 years ago and had been doing amazingly well, but we have just been told as his para proteins are high again he should start treatment again. He is relatively fit and has been really well but now just looking at both options.

Does anyone have any information around these two treatments

  1. Daratumumab

2. Belantamab

I have downloaded both info sheets from cancer websites just wondered if anyone has any thoughts about either so he can make the right decision about which treatment is best in discussion with our consultant.

I haven’t needed to post for three years but any help would be appreciated.

Thanks

Keren

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Hi @Keren842

So sorry to read about your Dad’s situation.

I don’t have experience of either of these treatments and in all honesty you probably need pros and cons set out by your clinical team.

I’m sure treatment, whatever you choose will be challenging.

At the same time my experience has been that Consultants very proactive at exploring alternatives if something not working well or not agreeing with us as patients.

Hopefully someone from Blood Cancer Team can offer some advice

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Morning Duncan

Thanks for your reply, as you have said we have been very fortunate over the last three years with the care dad has received, from the consultants, all the haematology staff and in particular MacMillan where he has been a regular!

We have another meeting next week, lots of reading to do this week and then we will start on the treatment pathway again, just trying to find the most suitable option for him on this next stage.

There are always pros and cons as you said and everybody reacts differently!

Thanks Keren

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Hello @Keren842, I am sorry to hear about your Dad’s changed circumstances, but glad to hear he’s been doing well.

I’m afraid I’m unable to offer medical advice, and have no personal experience with myeloma, but I wanted to share our page about treatment for relapsed myeloma.

I’d also encourage you to contact our free 1:1 Support Line, which is staffed by the brilliant @BloodCancerUK_Nurses (also tagging them here in case they are able to offer any in-thread advice). They would be better placed to offer you informed, professional medical advice. You can reach them on 0808 2080 888 (press 1) or email support@bloodcancer.org.uk.

Take care, and please do keep us posted on how you and your Dad get on.

Ceri - Blood Cancer UK Support Services

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Glad to hear that your Dad is getting good treatment from everyone @Keren842

Definitely makes a huge difference.

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Hi @Keren842
I have had daratumumab/velcade/dex
What did you want to know about?

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Hi Ceri

Many thanks for this, I have looked at the treatment page for myeloma too and if needs be will contact the Blood Cancer nurses for further support once we know more from speaking with the consultant next week.

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Hi @Keren842 ,

Sorry to hear that your dads paraproteins are high again and he needs to restart treatment. How is he feeling about it? It is good to hear that he is feeling well and relatively fit. There are more treatment options available in Myeloma now which is wonderful, but having to decide on what treatment to choose is very difficult especially when you have to make the choice. Do you know what treatment your dad received before?

Daratumumab is a monoclonal antibody and in 2nd line treatment is normally given in combination with Dexamethasone (a steroid) as well as another drug combination depending on what drug you dad previously received. I have enclosed some information about Daratumumab here from our colleagues at Myeloma UK Myeloma UK Daratumumab It is given in combination with the other medications for a set number of cycles then it will be given on its own as maintenance treatment every 28 days until disease progression or unacceptable toxicity.

Belantamab has recently been approved as 2nd line treatment for Myeloma and is given along side Velcade and Dexamethasone (BVD) Belantamab Myeloma UK One of the main side effects to be aware of with Belantamab is the effects it can have on the eyes. Your dad will need to have his eyes checked before starting this treatment and during it. It is given for 9 cycles every 21 days with Velcade and Dexamethasone. Then Belantamab continues on its own every 21 days as maintenance treatment until disease progression or unmanageable toxicities occur.

As our lovely @Ceri has previously mentioned, I would be very happy to discuss both these treatment options with you in further detail if this would be helpful. I have lots of experience of both treatments from my time working within the NHS.

Kind regards

Fiona ( support services nurse)

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