where I am at today

[tjebi]

Hi, I have multiple myeloma, diagnosed in Oct 2005, chemo then stem cell transplant in Jan 2006. Remission until relapse in mid 2008. Firstly I have to say that my quality of life is very good and I am grateful that there is so much for me to share and enjoy. After taking Thalidomide for over a year, I found the side effects increasingly difficult to live with, so have been almost a month on Revlimid. So far - better in some, worse in others. Next week I see my Oncologist and find out if it's managing the MM well enough, so I am in that strange limbo that many of us know - in between blood test and results. Under the Thalidomide, my cancer levels were slowly rising so I have fingers crossed that the Revlimid is working super-well. cheers - Tjebi.

[harker]

Hi Tjebi You look and sound like a guy I know. Might be me? I was diagnosed with multiple myeloma in April 2007 and went through three or four different regimes of chemo (one with thalidomide) to no avail. But in December 07 I started on Velcade and it just wiped out the myeloma cells. I was due to have a transplant, but it was considered unnecessary so i have cells collected and in the Alfred if I need them sometime in the distant future. Hey, guess what. I just had to add 'myeloma' to the computer's dictionary. It didn't recognise the word. Either did I when I first heard it. I'll cross my fingers for you. Remember, you may still have Velcade up your oncologists sleeve. H

[tjebi]

Hi Harker, Thanks for your comments. That must have been scary to go through several regimes before finding one that worked for your cells. I'm glad that Velcade is working for you, I have heard of it and understand that there are other options I have before I would need to resort to another stem cell transplant. My myeloma cells responded quickly to chemo, but my Oncologist noted that though this was a good thing, it could signal that my MM would also bounce back quickly from treatment. This has proved to be true, and I sometimes characterise my disease as being "a bit frisky" compared to some examples where the cells are more "lazy". I find that having an understanding of my cells personality helps me have an active relationship with my MM, rather than a passive one where I wait to see how it is going to behave. I chuckled at your comment about educating your computers dictionary about Myeloma. I didn't even really know what bone marrow did before being tossed into the oncological world.

[harker]

It was scary, now that I can think about it with a bit of perspective. At the time I think I was just hanging on, hanging on and hanging on. I made sure I kept turning up, that's about all. I possibly went into suspension for ten months (April 07 to Feb 08), kind of like a hibernation. It effected everything and everyone, but I had to protect myself. That's the way I remember it. So, I'm writing about it now. Going back over that time is very demanding, I get exhausted after I've uncovered something I want to write about. I'm probably experiencing the real emotions now, more so than then. Interesting. H