Hello my name is Paula, age 56 I have been diagnosed with asymptomatic myeloma 2 weeks ago and I’m on watch and wait.
Not sure what I really feel at the moment, has anybody any helpful advice please? I see my consultant in 2 weeks. Thank you
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Hi @Paula1 a great big welcome and I am so glad that you have found us.
There is a lot of reliable information on the Blood Cancer UK website and if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
I attach a couple of links that might be helpful for you
Myeloma | Blood Cancer UK
Homepage - Myeloma UK
I have another blood cancer and have been on watch and wait for 19 years, but I remember being so shocked and scared at my diagnosis. I was suddenly in this surreal world that spoke medical speak.
Perhaps just give yourself time to take it all in and in my case it does take time.
My advice would be to write down all your fears, questions and practicalities to ask when you see your consultant in 2 weeks. Perhaps be pleasantly assertive and ensure you get answers.
Be ever so kind to yourself and look after yourself, oh, and keep posting.
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Hi @Paula1
I’m living with myeloma
I’m presuming your smouldering myeloma
Linking you a download
Also included the GP guide which I think is very helpful
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Thank you for replying to me and sending the information. My consultant said it wasn’t smouldering but asymptomatic myeloma, but on reading up on it, it says they are the same so I am quite baffled by this.
Getting a bit more anxious as the days get nearer for my apt on Nov 13, hope I am still stable.
Thank you, Paula
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Hi @Paula1
I hope you are doing okay tonight? It is really understandable to be feeling lots of different things right now as you settle in to what your diagnosis means for you. That’s the things about blood cancers- they do all effect everyone differently.
You have been given some really brilliant links to information so far so please do take your time with reading through things.
It can also be helpful to write anything down you come across that you might want to ask your consultant about. There are no silly questions Paula.
I also wanted to offer our support should you want to talk things through with us at any point- we are only a phone call away- 0808 2080 888.
Take good care, Lauran
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Starting chemo nov 22 feeling a bit scared.
Consultant said seeing as I’m young and fit enough we should get on with it, then a stem cell transplant further down the line.
Any advice I would love to hear it
Thank you
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Oh @Paula1 actually starting chemo next week and I think it is very natural to feel scared, for me it is the whole unknown.
As for advice I hope others will be more help.
Everyone’s experiences are very different, perhaps be guided by your medical team.
Tell them that you are scared and always let them know if you have any fears, problems or symptoms.
Keep things as simple as you can, just do things that you really have to.
Boxed sets are good to chill out to.
I get worn out with hospital appointments - emotionally, physically and practically.
Look after yourself and be ever so kind to yourself and post when you can.
Fingers and toes crossed for you xxxx
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It’s normal to feel scared
Do you know what regime you will be having?
56 is young and fit and you can do this
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So nice to hear from people on here.
I will be having 4 cycles, each cycle lasts 3 weeks once a week with one off.
Lenalidomise on days 1-14
Cyclophosphamide on days 1 and 8
Bortezomib on days 1, 8 and 15
Dexamethasone on days 1, 8 and 15
Then if all good I’m off to Christie’s for Stem cell transplant
Thank you for replying x
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Oh @Paula1 I do like to have a plan, the unknown is still scary, but I just feel better.
Please do let us know how you are getting on, I will be thinking of you.
Be very kind to yourself xxx
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Hi Paula
Im not familiar with cyclophosphamide I haven’t heard of it in my 6 years of myeloma and I haven’t had lenlidamide so I can’t give you any experience of the regime you will be doing
I am familiar with Dex and velcade though
DVD daratumumab/velcade/Dex is the one I had and I’m on maintenance dara and Dex
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Hiya
Just letting you know I had my first chemo last week it was by injection in my stomach like a bee sting and plenty of tablets to take and lenidomide by tablet each night.
2nd one on wed. I only had 1 wobble on Saturday as feeling dizzy & nausea.
Also was wondering how long approx are you in hospital when you have Stem cell transplant. Having mine at Christie’s should be around Easter.
Thank you
Paula
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Hi @Paula1 thanks for the update and it appears that you are doing well.
You ask an interesting question about approx how long are you in hospital when you have a stem cell transplant.
I await others sharing their experiences.
Perhaps it is very variable depending on the type of transplant and you as an individual.
You might ask your transplant team for their thoughts.
Please do keep posting what is going on for you.
Really look after yourself
Hi Paula, just checking in to see how you are doing. Where abouts are you now with the treatment, what cycle etc? Hope you feeling ok. Did you ask about your stem cell transplant? Look after yourself….
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Hi there👋
I’m doing fine so far thank you. I’m on cycle 2 week 2. I also had breathing & oxygen tests today and will be getting the bone strengthening tomorrow with my chemo jab.
With the transplant you are normally in 4-6 weeks.
How is your husband doing so far?
Do love this forum, glad I have found somebody going through the same RADAR trial as me. Are you keeping well and looking after yourself? It’s a big strain on loved ones isn’t it?
Paula
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Hi Paula,
We are both doing ok thanks. It is stressful and he thinks he’s a burden , but I will do anything for him. We are a partnership. I hope you have someone helping you. Feel free to use us to talk to anytime.
Glad that you are still doing well.Hope the breathing tests went ok. Hubby is nearly at end of cycle one and due to start cycle two. They say he is high risk due to genetics of his cells, ( they didn’t explain this, will ask )so they are adding isatuximab on cycle two. It is an infusion that he will have at same time as his velacade jab. Hoping he doesn’t have side effects as he has only had the fatigue so far. Are you on velcade, cyclophosamide, dexamethasone, , lenalidomide & the various support drugs? Wasn’t sure if everyone on radar had exact same or just some of them.
Have they given you an update on how the myeloma is doing or perhaps it’s early days. Do you know what sort it is?
Anyway we hope you continue to stay well and keep us updated on how you go. Try to stay positive it really does help. I know it’s hard and sounds cliche, but anything that helps is a bonus.Stay strong Paula, take care…x
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Hi Olivia
Thank you I’m doing well so far, didn’t get my bone strengthening infusion as I don’t want the side effects over Xmas, so having it next week.
Yes I think we’re on the same meds with the trial, which hospital will your husband be having his transplant?
Have a lovely Christmas 
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Hi Paula,
Glad you still doing ok. A good idea having your bone infusion later. What symptoms do you get with that? Hubby not had any issues with it. He has Zometa bone infusion. I assume you will be the same. He has just started cycle two, but they have added isatuximab also an infusion. It kept him up all through the night. I get frustrated when I can’t sleep so well but he is just able to rest and read. He does say though that his brain is racing and when he finally sleeps the next day he has really vivid dreams. Hopefully he will be having the transplant at a hospital in Sheffield, South Yorkshire.
Hope you have a lovely Christmas too, take care and be kind to yourself.
I hope everyone is well over Christmas and into 2024.x
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Happy New Year
Hope all is going well for your husband and you are keeping well yourself.
I had good results off the consultant and my blood levels and para proteins have come right down, lower than they were expecting so I am so pleased. Started on cycle 3 on wed but have been feeling very tired until today.
Consultant said I will be able to tolerate the Stem cell transplant as using my own cells, this has made me feel a little better.
Look forward to hear from you
Paula x
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Hi Paula,
What great news, we are so pleased for you. I hope that has given you a boost. Positivity is the key I think. It really helps the mind and body. I know you are on radar, but which drugs are you on as I think they can vary slightly?
My hubby was ok on cycle one, just the fatigue. At the end of this cycle they said he was high risk, so added isatuximab on cycle two. They didn’t explain that very well. I have since learnt that you can have cell mutations and they show if you will respond well or not to treatment.( hence introducing isatuximab) He has had various side effects, so he didn’t get the second lot. His sleep has got worse, then he got a bad rash on stomach/ back. They have taken him off his antibiotic, as said they thought that was the culprit. He also had a temperature, so I stressed out a bit worrying what it could be. I rang the triage haematology line at our hospital and he went in to be checked. It’s good that they say come straight in. Unfortunately my hubby didn’t want to go and said he would be ok, he just likes to soldier on. I persuaded him as it could have been something serious like sepsis. I think he thinks I worry too much, but I’ve done so much research, I know the things that can happen. He chooses to face each day at a time, but with little information.we all deal with things differently I suppose.
I’m so glad this radar trial is working for you, you must be overjoyed. Good luck for cycle 3, let’s hope it gets rid of more myeloma and proteins!
The last couple of days he has had bad constipation but he’s trying laxido, fingers crossed. It’s a guess which drugs are causing what, but hopefully they are all doing more good, so we put up with a bit of the bad!
Keep in touch and let us know how you are doing.
Heres to a happy and healthy 2024….x
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