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