[alpenatorParticipant]

I have just stopped CTDa (6 weeks early after horrendous side effects, but with low paraprotein, and with consultants approval) and await bone biopsy and skeletal scan to confirm that I have reached my first remission/plateau.

But what to expect now?

Do I continue with the bone pain that I have now (obvious, I suppose) and my current painkillers?

Do I continue with my current monthly Zometa?

Do I have regular (how frequent) checkups?

How do I know when/if MM returns?

It is another unknown world approaching with more questions and anxiety and little information. Obviously I will ask the questions at my next appointment, but will welcome your invaluable input.

[sanParticipant]

Hello Alpenator i so hope that you have reached remission:-) , when my Mum was in remission she continued to have zometa monthly and then saw the Consultant at a 3 monthly appt at that time bloods were taken to check the paraprotein level. The aches continued and she stayed on her pain control but certainly felt better in herself. Naturally if the paraprotein levels begin to rise then more treatment will be needed but i really hope that your remission is long, best wishes San xx

[alpenatorParticipant]

Thank you that was very helpful and confirmed what I thought may be the case.

I always feel it is better to have a bit of advance knowledge before seeing the consultant, makes you sound smarter than you are!!

Hope that your Mum continues to be OK

[mhnevillParticipant]

Hi Tony,
So glad you've reached remission. Isn't it great to be off treatment.

My experience is like San's mums. I continue to have four weekly infusions of Zometa and see the Consultant every 2/3 months. I still have bone pain, but it is a lot better than it was immediately post CDT when I was on OxyContin and Oromorph. I now just take my arthritis pain killers. My ribs are still uncomfortable if I try to sleep on my side, but don't give me any trouble in the daytime.

I am now 14+ months into remission and counting. It always is a bit nerve racking waiting for blood results, but as I said to my husband the other day, I don't feel like someone with MM!

Very best wishes for as long a remission as I wish myself!!

Mavis

[VickiParticipant]

Hey good luck alpenator and well done Mavis!,

It's a funny old game isn't it…..so many questions, sometimes worry and sometimes damn relief. So pleased you have reached a point where you can have a break in the treatment and long many your re missions continue x

Vicki and Colin xx

[alpenatorParticipant]

Thanks for all your responses.
I now know where I am going!
Had skeletal scan last week when I saw my consultant and have a bone biopsy in 10 days time. These to confirm the paraprotein results.
I then see consultant again in January with monthly bloodtests and infusions of Zometa in between.
I still have a lot of back pain and some leg pain but morphine patches and Oramorph help with that.
I also bought a back support (like a corset) which really helps with the back when walking – a very good buy.
At least I can pretend that I don't have MM for a while which is a good feeling.
Good luck to you all.

[tomParticipant]

Hi Anthony

Good luck with the results I have fingers crossed for you.
Am pleased the corset support works for you, its great to be away from the MM for a little while shove it in a corner and enjoy 😎

Tom Onwards and Upwards

[Author]

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