I have been diagnosed with Myeloma and have been given 3 options of treatment.
Option 1, stem cell treatment at the Royal Marsden.
Option 2, a treatment recently approved by NICE involving a variety of drugs including Lenalidomide.
Option 3, a lesser variety of drugs involving Cyclophosphamide.
I’m finding that making a decision on the best option very difficult. Can anybody help?
3 Likes
Hi @JohnR and a big welcome to the forum.
I can only imagine how hard it is to make a decision. This is such a personal choice based on your individual circumstances but I’m hoping there may be some members who have had one of these treatments who can let you know how it was for them.
Have you been able to talk this through with your medical team?
I wish I could offer you more. I have copied in the @BloodCancerUK_Nurses who will know so much more. Also, it may be worth giving the helpline a call to talk things through.
When have you got to make your decision by?
3 Likes
Hi @JohnR another great big welcome to our forum, I am so glad that you have found us
What a dilemma for you, I definitely do not envy you.
I often wonder how we as laypersons are supposed to make such medical decisions that have such enormous implications to the rest of our lives.
I hope someone will be able to share their experiences for you on here
Perhaps write down all your fears, questions and practicalities and ask either your specialist nurse, GP or consultant.
As @Nichola75 says it is also a very individual decision depending on your personal circumstances
Please do let us know how you get on.
I look forward to hearing more about you and be very kind to yourself and please do keep posting
3 Likes
Hi @JohnR,
I am really pleased you have found us. I am sorry to hear of your diagnosis and hope you are doing okay?
As others have said, the decision on which treatment you have is completely individual. However it should be decided upon in conjunction with the information & support given from your treatment team.
Can i ask John, have you had an opportunity to discuss all 3 options with your consultant or nursing team and had space to ask what they all might mean for you?
It is no wonder you are finding this decision really difficult John, as each treatment option will hold it’s own risk, list of possible side effects & also may practically impact you & your families lifestyle differently.
Therefore talking to your team about their aims of treatment can be helpful as they will be able to lay out projected timelines, benefits and concerns.
In case it is helpful to you in any way i have linked here to our information around myeloma treatments- Myeloma treatment and side effects | Blood Cancer UK.
In addition to speaking with your haematology team and finding support from others within the forum, I also would like you to know that our helpline is very much here for you should you prefer to talk things through with ourselves at any point- 0808 2080 888.
Take good care, Lauran
5 Likes
Hi Laura,
Thank you so much for your informative reply. I hope to speak to the nurse on my visit tomorrow. I already have reams of paperwork and leaflets to wade through and although they are full of useful information there is nothing like a face to face to help, hence my reason to reach out on the forum. Thanks again.
John R.
5 Likes
Hi @JohnR I would glaze over with reams of paperwork and leaflets to digest.
Yes, you did the right thing reaching out to our forum, I hope someone will be able to help.
2 Likes
Hi @JohnR
I have been living with myeloma since 2017
I presuming you have been given two different chemo regimes to choose from?
A regime consists of cycles
Usually 4-6 cycles are required before having a stem cell transplant
Everyone’s myeloma is individual all your medical history is taken into account with any other conditions you may have and chemo regime tailored for you. You ideally need to be discussing them with your consultant.
I’m familiar with VDT - velcade/Dex/thalidamide
and DVD - Daratumumab/velcade/Dex
3 Likes
Please let us know how you get on 
2 Likes
Hello @JohnR
I just thought I would check in with you, say HI, and ask if you had managed to speak with your Haematology team.
I do hope you were given some time to ask your questions and feel better informed to make a decision on the treatment options you were given.
Take care, Heidi.
2 Likes