Izzie started the topic Diagnosed April 2013 in the forum Newcomers 10 years, 10 months ago
Hi everybody out here – looking for some support from all you lovely people out there. I was diagnosed April 2013 following being hospitalised with meningitus. So a double whammy for me!I am currently on a clinical trial have finished taking oral chemo and am now on my third course of Velcade – went yesterday and my para proteins have gone from 33 which the initial reading to 2.6 – but they would like them lower if possible.
Finding it difficult at the moment – started off so positive – but I feel that has dropped by the wayside and feeling very weepy. I seem to have had so many antibiotics for various minor infections that because of the suppressed immune system they have really taken their toll-however my GP has been marvellous – just wanted to bend someone’s ear – trying not to say too much to my family as I know they are worrying so much.
Hi Izzie
Welcome from me too. Glad you have decided to join us as I’m sure you will find lots of support here -I do!
It is interesting that you are on a Trial. Is the Velcade for maintenance? Is the plan for you to go onto SCT?
I just had CDT which fortunately brought me into remission. I have not has a SCT. My choice because of other health issues among other things. I am 68yrs. You didn’t say how old you were. It does affect how we feel about things.
It is natural to get depressed from time to time, even without the fact that you have been pumping your body full of poisons. Your PP levels have come down dramatically and can come down more. But don’t despair as many folk carry on a “normal” life with levels like yours one are.
One thing, if you are going to have MM (horrible disease) this is the best time to have it! There are so many new drugs and treatments in the pipeline. Think, four years ago getting Velcade was a Post Code Lottery, and four very brave sufferers grouped together to lobby Parliament for the right for all to have it. Now it is not only available, but is given by injection which has less side effects.
Myself, I am holding my breathe for the success of “The Black Swan Project” which is seeking a cure. For MM.
Infections are worrying, but just see each one as a battle to be won.
Andy, a member here, always writes, “each day is a gift, use it well!” I think that is the best of advice.
I am 3.3 years post diagnosis! There is life beyond MM!
Love and best wishes.
Mavis x
P.S. I do hope this actually posts, as I am finding the new way of logging on a nightmare! M