[jataylorParticipant]

I’m due to start this treatment on Monday. The various posts have reassured me about the effects; what still worries me is the impact on my veins, with a canula going in (presumably) every week. It hasn’t been easy finding a suitable vein for other infusions (Zometa) and the bruising from that usually lasts a week, so another one will have to be found.

[jataylorParticipant]

It’s helpful, Jan, to know you are on the same drugs. It means I will definitely press the myeloma doctors on this, as it does seem that it’s a side effect of the drugs rather than an infection. Fortunately I don’t sweat during the day time, or not much; it’s at night and when I’m fast asleep, that it’s worse. If I have a restless night and don’t sleep much I don’t sweat.

I’ve also been having bowel problems and diarrhoea, which is much better since I was prescribed Colesevelam. However, the pharmacist at the hospital warned me not to take these pills at the same time as the other pills as they can have an adverse effect (something the doctors weren’t aware of).

Judith

[jataylorParticipant]

I’m replying to the most recent post (2 months ago) from someone who is suffering from Tinnitus, but I haven’t found a way of replying to his post.  Just to say that tinnitus is not a big problem for me, but increasing deafness is, and it has been suggested that I see a specialist but so far no appointment has been made.

Action on hearing loss has some useful ifnormation about tinnitus, and its shop includes aids of various kinds.

It’s sometimes difficult to know who to go to when it’s not clear if your problem is myeloma related or not.

 

 

[jataylorParticipant]

Perhaps this is something Myeloma UK could look into? Hopefully someone from the organisation reads these posts.

[jataylorParticipant]

I’ve been increasingly aware of the impact of the stem cell transplant on my nervous system generally.  Recently a (private) audiologist checked my hearing and said that the deterioration in the hearing in my left ear was related to the auditory nerve, which was probably affected by the chemotherapy.

I was given antibiotics at the time of the transplant but am not sure what they were.

So overall my hearing is better than it was immediately after the transplant (it took 2/3 months to improve) but worse than it was before the transplant.

[jataylorParticipant]

I’ve only just joined the forum so apologies if this is too late, but Marks and Spencer will cover myeloma in their travel insurance for one off trips – not annual insurance.  Also not sure about countries – I only wanted Europe.

[Author]

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