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.
Hi
I am so sorry to hear that your husband’s are struggling so much. It also frustrated me so much to hear that consultants are continuing to ignore the voice of the patient and having the “treat at all costs” attitude.
I am one week out of hospital having had my first doses of Elran as 4th line treatment. I was told most people don’t have a reaction and at worst flu like symptoms from the cytokine release syndrome. However, I experienced extreme tumour flair alongside a huge drop in heart rate. The tumour flair was severe pain radiating from my bones which lasted for around 2 hours and occurred 24 hours after each dose. It was eventually managed by a high dose of steroids. They are aware of this side effect but it isn’t listed in the info on the drug. They did give me the counteracting drug for CRS initially which seemed to help but then they said the tumour flair isn’t CRS so didn’t use it again.
Since returning home I have also had significant fatigue. I am 55 and active but at the moment I can only do small things and spend a lot of time resting. This is completely different from previous treatments. I am due to have an immunoglobulin transfusion next week as my immune system has been weak for a while so they want me to have that every 4 weeks. I am really hoping that this fatigue changes but I am concerned that it won’t s this is not how I wish to live my life.
I am also currently experiencing quite a bad skin reaction to the jab. I think the steroids in hospital helped to control this but now they have reduced the steroid dose my body doesn’t seem able to cope with the irritation. I am waiting to hear back about this.
It does sound like there are still significant side effects with this drug which patients are not told about. I tried to find out as much as possible before I agreed to this treatment but I don’t feel that I was given the full facts. I do know that it is possible to swap from this drug to Teclistamab if you are experiencing problems with it as Penny has mentioned previously. I had the choice of the two and decided on Elran but now I wonder if I made the right choice.
I would urge people to be assertive with consultants. You have a right to have a say, to be heard and to get answers. In the last 12 years I have had great and bad consultants and I have experienced being pushed beyond what I can endure regarding treatment due to them focusing only on the end goal.
I really hope you are able to get answers.
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.
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.
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.
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.
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.
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.
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.
