[birderParticipant]

Saw the consultant this morning, I have 5 lumps ( 3 on front, 1 on back 1 on arm)- plasmacytomas, he says I have an aggressive myeloma and has prescribed steroids for 2 weeks – he said he has to prescribe these even though they won’t do much- before he can prescribe the next lot of drugs in 2 weeks- it’s all part of the drug protocol he has to follow.
He also said its no good doing the stem cell treatment as the chemo I had a few weeks ago is the same used in the stem cell treatment and that chemo hasn’t stopped the myeloma spreading. I think the new drugs he has talked about are my last chance. Does this sound familiar to anyone? Thanks in advance.

[rabbitParticipant]

Hi birder,

What you are going through is tough, even by the standards of us myeloma patients.

When you say that your myeloma is aggresive, does your consultant mean that it is “high risk”? This means that the chromosomes are abnormal (I have this). If so, there are treatments that are pretty effective. Happy to give more info if this is the case.

More generally, there are many myeloma treatments around these days. Do you know what your consultant is planning for you to have?

Regards
Rabbit

[birderParticipant]

Thanks for your reply rabbit, my consultant has put me on steroids for 2 weeks and then plans to prescribe new drugs, I don’t know what ones yet. He said he would like to put on the new drugs straight away but has to follow protocol and cannot give me the new drugs until I have been on this steroid treatment- which I started today. To be honest I have a lot on my plate as I’m a carer for my wife and have so much going on in my head. He didn’t say anything about chromosomes. Any info you have would greatly appreciated. As for the high risk- because the myeloma has spread I have been told by the consultant that it’s not good. I was discussed at the multi disciplinary team meeting last week and the plan to put me on these new drugs was decided then. I need to ask more questions when I see the consultant in 2 weeks.

[rabbitParticipant]

Hi Birder,

You – and your wife – are clearly going through so much. This is so tough for you and I wish that I could help.

Do you have any friends or relatives who could assist you? The only other thing that I can suggest is that you contact 0808 808 00 00

There are two obvious areas of questions.

Why is the myeloma so aggressive?

One reason could be that your chromosomes may be ‘messed up’ (or to put it more technically, you may have chromosomal abnormalities). This happens in around 20% – 25% of cases, and would make your case high risk. There are several different kinds: mine are t(4; 14) and +1q. The more abnormalities, the higher the risk.

What will the treatment be?

This is pure guesswork, and I am a patient, not a medical professional, but it would strike me as strange if you were given similar chemo to what you have had already. For example, if you have had lenalidomide and that hasn’t worked, I would be surprised if you were now given thalidomide (which is similar).

One recently approved chemo is elranatamab. It is a bispecific antibody treatment (there are alternatives: teclistamab and talquetamab). They work in a completely different way, and seem to be pretty effective in high risk cases. There is a discussion in the Treatment section here about how things have gone so far for patients on elranatamab.

As I said, all this is personal guesswork. If you could get access to your NHS medical records (maybe via their app), they should contain more info on what is going on.

Regards
Rabbit

[birderParticipant]

Thanks for your reply rabbit, my wife’s son has moved in with us and is looking after both of us, we both help each other to look after my wife.

I will ask my consultant about the chromosome issue.

The drugs you mention I have seen on cancer charity websites and I’m hopefull they will help me. I will make a note of these drugs and ask my consultant if I’m going get any of these.

As for medical records I’m going to try and get access.

Thanks again for your reply and will look at the forum ref elranatanab.

[Author]

Posts