Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
I’ve had my first Velcade injection today following my diagnosis of myeloma last month. They’ve said that I’ll be having this twice a week along with thalidomide and dexamethasone. I’m quite overwhelmed with the amount of different medications that I need to take. Is this just for the duration of the chemotherapy or will I still be on daily tablets even in remission?
Also I would like to say a big hello to everyone, this is the first time I’ve joined a forum and this one looks very supportive.
Welcome to the forum although I am sorry for the reason you had to join it. I remember the first few weeks being a real whirlwind but I’m hoping soon you’ll get into a rhythm with it. I had a similar induction treatment to you but had to have cyclophosphamide instead of thalidomide.
In terms of your question, it really depends on what your medical team has planned for you. A lot of people stay on what is called maintenance treatment which is a lower dose of the induction treatment as there is some evidence that it helps with longer remissions. Others, like me, go forward to an SCT, and then don’t have any treatment afterwards. Some have an SCT and continue with maintenance.
There can be divergence in treatment sometimes so it may be worth asking your medical treatment what their plans are for you. Although having said that, I often just liked to think about one cycle at a time, and not worry too much about the long term.
Anyway, Welcome to the forum, and I hope you find a lot of support here, and we’re certainly very pleased to have you on board.
All the best
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Thanks very much for your reply, it definitely sounds like treatment is tailored to the individual. Taking it one step at a time is great advice, how do you feel after your SCT?
Thanks so much for your reply, it’s so comforting to find others that have been through it. That’s fantastic that you’ve finished having treatment and are in plateau. I’ll definitely be asking for advice on the things they offer me in the future.
I am doing good, thanks for asking. I am over 3 years after SCT now and on catch-ups every 4 months. I just take penicillin now which is because I had an allo transplant, but other than that no other treatment. I can’t say it was all plain sailing but the treatment did what it was supposed to do for me, so I really hope you will find the same.
Sorry you had to join this group - Byrne we are all in the same position - we all joint beacuse of MM. I wont repeat the excellent advise your have been given already as each contributor was spot on. All I will say to you now is to monitor how you are responding to your medical protocol. How your body feels, and possible side effects and don’t be afraid to discuss these with your medical team.
I started on VTD in September and had to changed to KRD and now on my way to ASCT. Today I had Cyclophosphamide and from tomorrow I start G-CSF.
One moment at a time.
Thanks for the wishes. I am taking it one moment at a time so have not discussed post ASCT.
i can see you and me are about the same age, you must have been as shocked as I was when you found out.
can I ask how yours came about, was it through any pain?
i didn’t have pain, just felt exhausted all the time. They found me to be anaemic last July but diagnosed me with a vitamin b12 deficiency. It was only when I’d had a cough for 3 months and still felt unwell that they did kidney and liver tests which showed the Paraprotein. Like you I was totally shocked and can’t quite get my head around it yet.
I know exactly how you mean. So you escaped having to have the bone marrow aspiration then. Omg I couldnt bear mine. I had to have two in the end. I think people should be put out to have that done.
Thanks for your advice, I think that’s a really good idea to monitor response and side effects. I was reading about ASCT last night, it’s absolutely amazing what they can do to treat us.
definitely one moment at a time
I did get a general for my bone marrow biopsy.
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