[paul1967Participant]

I’m currently undergoing DVD treatment after my first SCT failed after 18 months.

I was told originally that I would have SCT #2 after about 6 cycles of DVD.

My specialist phoned me between cycle 5 and 6 to say he has been discussing my case with a panel and they think a 2nd SCT is not the best option given my age. I am 53 so don’t know what he means about age.

He has suggested a bone marrow transplant and said this would be a cure.

I thought there was no cure for myeloma.

There seems to be very little information about BMT relating to myeloma.

[mulberryParticipant]

Hi Paul, I suspect the panel are suggesting an allogenic stem cell transplant using donor cells, possibly from a member of your family who is a close match to you, or from an unrelated donor- you may have heard of the Anthony Nolan trust? It set up a donor bank for stem cells, I think there are 2 now in existence.
This type of transplant is not usually offered to myeloma patients because for the majority of us (as older patients) it has a high risk of death. However it can be an option with younger patients such as yourself. Not all allogeneic stem cell transplants produce a cure for myeloma, and there is a risk of graft versus host disease, but some patients have remained in remission indefinitely, so are functionally cured.
I would want to see an experienced myeloma transplant consultant before making this decision, but I’m guessing that will be available to you as transplants are only done at the major hospitals.
Let us know what you decide to do, and how you get on.

[paul1967Participant]

Thank you

They did ask if I had any siblings, but I don’t.

I am waiting to speak with an Expert. Is an expert better than a specialist? 😀

They told me they do not do that procedure here so would have to go another hospital about 20 miles away.

I’m just waiting for my DVD as I type, and have been told they are trying out a new subcutaneous method of delivering the Daratumumab today. Takes 5 minutes instead of 4 hours. Not actually looking forward to that. I’m already getting sensitive where they inject the Velcade.

I’m not as bad off as many people so I am appreciative of that.

[kevinParticipant]

Hello Paul

I have had 2 SCT my first when 49 and the second when 54. Both times they used my own stem cells. It is very specialist so you do have to go to a hospital that does the procedure. I live in Kent were I am treated but had to go to London for both my SCT. As Mulberry said about seeing a SCT Consultant prior to both of my SCT I went to see the transplant Consultant overseeing my SCT in London to discuss the procedure. My understanding about myeloma be curable is that at present this is not the case but that it is very treatable and getting more so each day. I was diagnosed in 2006 and am at the moment in full remission after 2 relapses. You may find it helpful to contact the Myeloma UK info line and have a chat.
Best wishes
Kevin

[paul1967Participant]

My SCT was with my own cells too.

2006 and you are still in remission. That gives me hope for my own situation.

Are you on any treatment at the moment Kevin?

[kevinParticipant]

Hello Paul

I haven’t been in remission since 2006 but have had 2 relapses. Each of my SCT gave me about 4 1?2 years full remission. My last relapse was in 2017. I then started treatment with carfilzomib and dexamethasone followed by a period of maintenance with the same two drugs. I finished this in November 2019. This again gave me full remission. The only treatment I have been on since then is a dose of Zometa (zoldronic acid) every 4 months.
Best wishes
Kevin

[Anonymous]

Hi Paul,

How did you get on with your sub-cut injection of Dara? I was on DVD earlier this year. My stomach did get rather black-and-blue with the Velcade injections, so I sympathise. With Covid-19 around, however, the idea of a five-minute injection instead of a very long infusion sounded great to me – but it wasn’t available then. I do hope it wasn’t too sore having both injections. It is amazing how quickly treatments progress with Myeloma and this helps me keep my hopes up. I love reading encouraging stories such as Kevin’s too. I was diagnosed in 2012 and have had one relapse so far. I am currently recovering from my second stem-cell transplant which also took place in London. I hope your discussion re a BMT with a donor are progressing well.
Best wishes,
Rachel

[paul1967Participant]

Hi Rachel

The injection went ok.
I liked that they didn’t need to have three attempts to cannulate me. They always have to use the vein finder and still struggle.

This time they still kept me under observation for 4 hours afterwards but said next time it’ll be quicker. Although I’ll still need to be there for an hour for the pre-med cocktail (paracetamol, dexamethasone & piriton) to circulate.

I don’t feel the needle at all in my abdomen. Even when I used to inject myself with the anti clotting stuff (I can’t remember the name) I didn’t.

I did feel it going in though. Maybe I would have felt saline going in too.

Since Tuesday, I don’t feel any soreness in that area.

I’ve not spoken to anyone yet about the BMT but they did take several samples of blood for type matching.

[Anonymous]

Hi Paul,

That sounds quite encouraging about the Dex injection so I hope that bodes well for you for the rest of the treatment. And yes – avoiding cannulas is a big advantage! I had a line for my DVD treatment but now it’s been removed I’m back to cannulas for my Zoledronic Acid infusions. People with Myeloma so should be born with nice big veins but I have tiny wrists and I definitely wasn’t!!

All the best,
Rachel

[Author]

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