Hi, this has come completely out of the blue after routine blood test, my paraprotein was 31.14 kappa igG and my mri and bone marrow biouall clear, it’s my FLC that has surprised them at 275, so they are having a MDT meeting today to see if I would benefit from treatment, I’ve been given booklets for the RADAR trial, and don’t know wether to go for that or standard protocol, I hear daratumbab is great but it’s not on the trial? And there is more info about survival rates on that, than
On the RADAR, I’m so scared
4 Likes
Can someone please comment, I’m finding all of this very hard, I’m a mess
1 Like
Hello @Byrnebaby, welcome to the forum. I’m glad you found us, but I am so sorry to hear about the stressful circumstances that brought you here. How you’re feeling is completely understandable - it’s a world-altering thing to receive a diagnosis.
I can see you’ve mentioned RADAR vs standard treatment and wondering about daratumumab - it’s only natural that you’re trying to make sense of all the different terms and pathways, especially when the information lands all at once. The tricky bit is that only your clinical team will have the full picture of what’s going on in your results and what might be best for you right now.
However, you might benefit from talking to our @ClinicalTrialsSupportService who you can contact via this page. They can explain how clinical trials work, what kinds of things to consider, and help you come up with questions to take back to your consultant. Many people find it really grounding when faced with sudden decisions like this.
You might also find it really helpful to speak with our @BloodCancerUK_Nurses on the Support Line (0808 2080 888). Not only are they a brilliant source of clear, reliable medical information, but they’re also incredibly skilled at helping people navigate the emotional side of a diagnosis; the fear, the uncertainty, how it affects day-to-day life and relationships.
As for the Forum - although it can take a few hours sometimes for replies, you’re definitely not alone here. Plenty of people have posted when facing treatment choices or trial information out of the blue, and reading others’ experiences can help take the edge off that sense of free-fall. You can use the search bar at the top to look for similar threads, and the Related Topics section at the bottom of the page can surface posts that might speak to what you’re going through.
Please keep posting if it helps. You’re not a mess, you’re someone dealing with an enormous shock, and you’ve done exactly the right thing by reaching out. We’re here with you.
Take care and be gentle with yourself over the next few days as you process everything,
Ceri - Blood Cancer UK Support Services
5 Likes
Hi @Byrnebaby
I’m so sorry you find yourself here but am glad you have posted because on here you’ll always find others who understand.
I went right back to my diagnosis appointment ( I have a different blood cancer) and that fear and shock that I felt. It sent me in to a spiral and my thoughts and emotions were all over the place. It was so much to process.
Everything moves so quickly and you have so many decisions to make when you been thrown in to this medical world that you know nothing about.
Please try not to google too much. Use the information on here, call the helpline if you need to talk things through and write down all of your questions ready for you next appointment. If you can, take somebody with you to appointments. That really helped me.
I can see @Ceri_BloodCancerUK has given great advice.
We are all here for you.
5 Likes
Thanks Ceri, I’m back in on Thursday after MDT meeting today, I broke down in there yesterday, totally misunderstanding that when consultant said ‘ meeting to see if you benefit from treatment’ thinking it meant I’m beyond treatment and it won’t help me, but giving details of the radar must mean they can help me?
1 Like
I’m sorry you are here too, it’s so frightening I feel I can’t breathe at times . I will be starting induction in the next 3 weeks if needed, and just wondering if I can still walk etc and see people if I’m on that? It’s all so new and frightening and I’m just thinking I’m going to die soon
1 Like
I think we all jump to worse case scenario. I know I did. It’s so early in your journey and it’s ok to feel the way you are feeling.
Just try and take it day by day or hour by hour if you need to. It really helps to talk things through - if you can, give the helpline a call.
Nichola 
3 Likes
I’ve read so many hopeful stories but many more sad ones and want to pick therapy wisely on giving g me the best chance
1 Like
Good morning @Byrnebaby - I know you have your appointment today and just wanted to check in on how you’re doing?
Do let us know how it goes, and know we will be thinking of you.
Ceri - Blood Cancer Support Services Team
2 Likes
Hi Ceri x thank you so much for thinking of me / I do have active mm unfortunately but fortunately no crab symptoms at all, my bloods are really good, just the paraprotein and pesky FLC at 275, so I’ve applied to join the RADAR as there is a lot of support, I had a whole load of questions, and waiting feedback on wether I can join as I need to be on my GET gel for surgical menopause and I have Lichen Sclerosus so need my maintenance dose of steroid cream
1 Like
It sounds like you went to your appointment very prepared and I hope it helped being give the opportunity to ask all of your questions.
Keep us updated on next steps.
How are you feeling after the appointment? I can imagine it was very full on and emotionally exhausting.
Nichola x
3 Likes
Hi Nichola! Yes it was very emotional and exhausting, plus clinic was running an hour late, so the nerves were shattered, how I’m feeling? Bring on Christmas and all the goodies, start 2 or 9th Jan, having Friday meds as hubby home fri/sat with me,just got to break in gently to my grown up kids now x
2 Likes
Breaking it to the children is always hard. I hope you feel a sense of relief once you do.
Let us know how that goes and then enjoy Christmas. Do exactly what you want to do, when you want to do it and eat lots of nice things 
2 Likes
Thanks Nichola, I’ve woke up feeling ok get on with it, then with In half an hour I feel so down and just don’t know how I’ll cope, at the moment in fit and ‘healthy’ and I want to still be able to go shopping and do my 10k steps, but reading L some of the stuff out there , I just don’t know if I’ll be normal again and it feels like trying to hold back a tidal wave 
1 Like
Hi @Byrnebaby everything your feeling is normal. It’s life changing news.
it’s good to see that your team are on this right at the beginning before any other damage.
The Radar trial I believe is working well for newly diagnosed low risk myeloma patients to get them into a good remission. Daratumumab is also producing great results.
My family in law member was diagnosed 2 years ago. They had daratumumab in complete remission no maintenance either.
im living with my myeloma 8 years now.
Everyone responds differently so dont get hung up on other peoples stories. Give yourself some time to digest what’s happening and take each day as it comes. Christmas is coming so make this a time of coming together and just be.
I can try and answer any questions except your personal medical history.
4 Likes
Thank you so much for taking the time to respond, the radar trial isn’t using the daratumumab it’s something else, I can’t remember at the moment, I’m signed up for it just waiting on echo and ecg, and ironing out meds I’m already on to see if they are safe, only thing that’s disturbs me is not using the daratumumab and I know it works, so I’m conflicted, and trying to get in my head how I’ve got to go from fit and ‘healthy’ to ill to get some sort of better ,
2 Likes
You may well be one of those who goes through treatment just feeling tired. You will come out the other side and you will get through any side effects. We have to do this to get a good quality of life. Try and be as fit as you can eat well and enjoy cake/coffee/a shower/fav book.
Also don’t be afraid to ask for counselling to make some sense of it all.
I had daratumumab as second line and it’s worked well for me I post second transplant and nearly 4 years on maintenance dara.
Dara is still available down the line so don’t get too disheartened.
As a side note my kids at the time 15 and 19 were amazing I involved them right from the beginning. My daughter was learning about stem cells at the time and was able to ask questions. Her main concern was would I lose my hair. My boy was quiet he listened then asked to go out with his mates. Let them do things and ask questions. If you can’t answer them say you will find out. Kids aren’t daft are they 
they know when something is up.
You got this
2 Likes
Thanks again, mine are actually 32 & 35, going to tell them before I start treatment but after our little Christmas, I want them to trust me as they live quite a while away, I’ve just read the trial on cancer resrch website and now a but then this bit, you stop treatment if it gets worse? Does that mean no more yreatment at all or try something else!? I’m very scared now
1 Like
If that treatment doesn’t work there are more that you can have so don’t worry. Sometimes myeloma doesn’t respond to a certain treatment and responds really well to others
Lenlidamide is very good too most now are put on lenlidamide maintenance.
Your being well looked after
I had dara via the cancer drugs fund as it wasn’t available for second line in 2021 only in trials. Now it’s used for newly diagnosed. Treatments are coming on leaps and bounds.
1 Like
