[tmcintyreParticipant]

Thank you both very much for sharing your experiences. Dave’s reaction is not listed in the info for the drug and seems to have come as a surprise to his consultants.

We have told them of our worries about continuing with the drug but we’re told to wait for the bmb results.

Fatigue seems common with most Myeloma treatments, Dave’s has worsened as time goes on but this is the first time in 9 years that he’s had such a bad reaction, previously just skin rashes which eased quite quickly.

Please keep me updated with your progress, both if you.

[lafleckParticipant]

Hi. I know that it’s early days in the use of Elranatamab but I am aware that some patients have changed from weekly/bi weekly treatments to less frequent treatments, which is contrary to the NICE protocol. I would be very interested to hear how this may have come about ie was this down to you, the patient, requesting the change or at the suggestion of the medical team. Also at what stage this occurred and how it’s all working out for you. Thank you.

[sj2909Participant]

Hi

I have just finished my first cycle and started my second. I’ve struggled to be honest, low energy, reactions to the jabs and to the immunoglobulin, let w immunity and blood counts. I spoke to my consultant last Tuesday and she told me that once we get to the end of this second cycle she can review how often I have the jab going forward.

She told me that they are recognising that it is not necessarily required to give the jab every week to get good results. Once the myeloma is under control it is possible to manage it with less doses with some people going down to once a month. She has said that after this cycle she may be able to move me to everything 2 weeks. I think that usually it is reviewed at 3 months from starting and often reduced at that point if you are having a good response.

Some time ago I was listening to a radio 4 program about cancer treatment. They had some specialists on the program who were talking about the fact that they are recognising that it is better to treat cancer with less of a sledgehammer approach. Apparently when the cancer is attacked full-on it recognises it and tries to respond. But if it is attacked in a less aggressive way, it doesn’t always recognise that it is being attacked and so this is more effective in treatment. I feel that maybe in lengthening the gaps between the injections it is maybe following this type of approach. It is definitely worth raising all of this I think with your consultant and seeing what they say because as we know everyone is really different in how they respond to treatments. I hope this is helpful and good luck.

[sj2909Participant]

Hi

I am seeking advice, particularly from Penny if she reads this. I have been having skin reactions to Elran since I started it 3 months ago. My hands and feet are really dry and crack if I don’t continually moisturise. In the last 2 weeks my scalp, forehead and ears have started to itch badly, like prickly heat and I think I have probably lost about 50% of my hair.

I am desperately trying to get answers but the nurse specialists have not been coming back to me and the consultant is only contactable through them. I am really wondering if this is manageable or if I should push to switch to teclistamab. I wondered what others experiences are around this.

Thanks
Sarah

[pennylawsonParticipant]

Hi Sarah (and other readers)
Sorry to hear you’re struggling with Elran and especially the skin effects. You shouldn’t feel that this is a minor issue, having had a very itchy rash, albeit only for a few weeks, I know it is really unpleasant and hard to tolerate. I would say keep pursuing your team for help. If you’ve already tried the obvious ways to reduce the problem and it’s not going away, to me that says your body is not tolerating Elran very well.
For me, the switch to Teclistamab solved the problem, but as we know everyone’s reaction to these BITE therapies, and how effective they are in fighting Myeloma, is different, and I think they just don’t have the data yet to know exactly what options are best. Both drugs worked 100% very quickly to get my free light chains down to undetectable, so I’ve been really lucky. You could try putting the question as ‘is there any reason for you NOT to try teclistab?’and see what they say.
I’m still living life to the full, away on lots of holidays and very active – so it is possible! But I realise how very very lucky I’ve been. Very best of luck getting through this phase – keep pushing and never feel you are less deserving of medical attention and good care than anyone else.
Penny x

[sj2909Participant]

Hi Penny

Thanks so much for your reply, you have made me feel so much better. Sometimes you are made to feel like you should just accept the side effects and get on with things and my inner voice was saying some people cope with a lot worse. Having someone who has experienced this give you reassurance that you are right to push for help really helps and I consider myself to be a pretty assertive person usually.

I am starting to think maybe this isn’t the best drug for me. The hair loss is progressing every day and the skin on my fingertips has cracked today because I tried to do some DIY. I had an amazing response, light chains down to 4 in under 4 weeks, but since then it has been a constant struggle with multiple minor side effects.

I will pursue again on Monday with a slightly a less patient response!

Thanks again
Sarah

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