[sj2909Participant]

Thanks for giving us your experience. It’s especially helpful to know that even though it didn’t work initially you were still able to try it again. I was diagnosed in 2014 so have had a similar amount of time in treatment. I am waiting to be admitted to Worcester hospital for the treatment but I have been told that they use Teclistamab as it is easier to administer. I don’t know if I will have a choice but a myeloma specialist said that the average length of time for tec working is 12 months compared to 17 months for Elra. I do find it daunting facing new treatment and trying to ensure I feel I have taken the best option.

[sj2909Participant]

Penny it is so good to hear how well you are doing, you have really helped me face my next line of treatment. I hope you had a great holiday too! Just on Talquetamab, I have been told that is a 5th line option as it works slightly differently so you might want to keep it in your back pocket. As far as I know it is approved now as I was given info on it as part of my options.

Hope this helps.

[sj2909Participant]

Hi

I’m really sorry your husband has been so unwell, it’s so difficult when you know the treatment is working but you are not getting quality of life. I am not currently on this but I am due to start it or Teclistamab in the next couple of weeks and there are a couple of things to pass on I think.
Firstly, I asked about the amount of treatment and hospital time and my consultant (who has just been to some sort of myeloma conference in London) told me that they are realising that the drug doses can be tailored so it may be that they can be altered sooner than the 24 weeks you mentioned.
The other point is that I have spoken with regional myeloma specialists because I wanted to assess all options. You might have done this but I would definitely question your consultant on specialist advice if they are not a myeloma specialist. I have been told the Teclistamab and Elranatamab are very similar 4th line drugs so I wonder if you could discuss swapping if the symptoms don’t settle down. I’d welcome other opinions on this, I know one of the contributors on this thread was switched. I am also being told that my hospital favours Teclistamab so I may have to take this option.
Good luck, I really hope your husband feels better soon.

[sj2909Participant]

Hi Penny
Thanks so much for your post, it has really lifted me and I am so happy to hear that you are enjoying an amazing holiday. I feel very reassured by the posts on here, I can’t tell you what a difference it has made. I wish I had joined this chat two months ago when I knew I was going to have to progress with treatment.

[sj2909Participant]

Hi. Could you clarify what STC is please. Are you referring to stem cell transplant? I had two and for both was placed in a room of my own. I found it very isolating but certainly not noisy as it is separate from the ward. We were initially put up in a flat but I felt too sick so they brought me into the hospital early. It’s a long time to stay on your own but it is also reassuring to be close to medical care. Perhaps you could ask about a split between the flat and the hospital but if the flat is close to the hospital it will definitely be nicer than a ward room. Not sure if this helps.

[sj2909Participant]

Thanks so much for your reply, that’s really good to know. I have now got a telephone appointment with a regional advisor next week so I will post any info I get from her.

[sj2909Participant]

Thanks to you all for taking the time to track your progress so that we can all benefit from your insight. I was given the leaflets for Elran and Teclistamab last month as my 4th line option and I have to say I found the list of side effects really scary. Like others, I was also worried about the treatment taking over my life.
I have been considering trying to get on a tcell trial but that would mean a lot of travel and, after 2 stem cell transplants, I am loath to go through something similar.
Your posts have helped to reassure me, especially knowing that the injections can be reduced and that I can still get away for a holiday. Does anyone know what the prognosis is with these drugs? A difficult question I know but my consultant didn’t know what current results are showing in terms of how long it can last.
I’ve also been give info on Talquetamab and I have no idea how to decide which option to go for. I appreciate any info anyone has and I am so glad to hear people are doing well on these drugs.

[Author]

Posts