[Anonymous]

Hi all

I am not feeling great health wise at the moment, which is a bit concerning, as I’m likely to start on my trial treatment during August, and was obviously hoping to be well prior to that.

I know my PP is 40 something, and my HB count is dropping, so I know I’m partially anaemic, which could contribute to why I have been feeling so lethargic over the last few months.

A few weeks ago, I had a cough which took a couple of week’s to clear, then it went away for a week, then came back worse than before, along with a really painful sore throat.

My GP said the other day that I have a chest infection, so now on antibiotics for that.

I’ve been aware of the fact that I’ve been loosing weight over the last couple of months, so decided to weigh myself today, and was surprised at how low I’d gone down to.

I’m 5.8ft and have always been between 11.5 and 11.75st ever since I can remember.

I’ve now gone down to 9st 12lb, which is roughly a loss of just under 2 stone over the last couple of months.

I do remember loosing some weight just prior to when I was originally diagnosed with MM in June 2011, but I never went down to this level.

Is it generally normal amongst MM people to loose weight when their MM is starting to become active again? Was just wondering if others had similar issues following a a relapse.

I feel as weak as a kitten, as the saying goes, and I really don’t like the feeling, as I’m normally so very active.

It’s also really impacting on my ability to work, as the concentration just isn’t there anymore.

Thoughts welcome.

Terry

[Anonymous]

Hi again

I forgot to say, I feel so dizzy all the time as well, especially when I stand up from a sitting position.

[EvaParticipant]

Dear Terry,
While there could be a host of other factors impacting on you, I believe it is quite common for a patient to lose weight when mm is waking up. I did.
The positive thing to think about is that hopefully you will be having treatment soon. Which trial will you be on and when does it begin?
Eva

[Anonymous]

Hi Eeva

The treatment is hopefully going to be starting during August, but I have to be formally accepted on to the programme, which presumably will depend on results of various tests they will carry out on 29th of this month.

The following paragraph is taken from the information leaflet I received from Bart's.

This trial is looking at a drug called panobinostat to see if it is effective in treating myeloma when taken together with Velcade, thalidomide and dexamethasone and to look at the best dose to use.
This study is part of the Myeloma UK Clinical Trial Network portfolio of prioritised

[mhnevillParticipant]

Hi Terry

So sorry you have been feeling so wretched. Do hope you get on the Trial – it sounds exciting and as I said on another post,you are closely monitored if you take part.

It was only the chemo which made me lose weight but we are all different in how we react to this horrible disease.

Keep strong.

Best wishes.

Mavis

[Author]

Posts