[TinaPParticipant]

I am sending this on behalf of a friend. I myself have MM and am in my 3rd year of remission.
She had an easy ride with SCT and was only in hospital for 12 days.

This was followed by a very short remission. Now she has relapsed and a PET scan shows the MM is active and has spread to many areas of her body.

Her genetic test shows that she has a very high risk version of the disease with p53 loss making it far harder to treat effectively.

Obviously she is very frightened at the moment, and I don’t know what to say to her.

TinaP

[CarolsymonsParticipant]

Hi Tina
We all fear this same situation of early relapse so I think it is difficult for us to deal with another’s relapse. I guess you just have yo be there as a friend and listen to her fears. Many people suggest counselling and maybe that could be something that would help. I know if I were in the same situation I would be very anxious. Every 6 weeks before I see the specialist I fear that my myeloma has returned…it is nerve wracking.

Carol

[MrsLParticipant]

Tina, I too only had a very short remission post SCT and it does get you down. But, I have started my next course of treatment, 6 to 8 cycles of VCD and this weeks results showed my paraprotein level has dropped slightly, so there is hope. Also I have an appointment with the top man at Leeds next week to talk about future options. I understand there are several so no-one should give up.

Linda

[Author]

Posts