When I was released from the Seattle Cancer Care Alliance at the conclusion of the two and a half month transplant process, I had an exit conference with the attending doctor. It was a somewhat disheartening consultation because of this part of the final report:
She does have a history of translocation 14;16, monosomy 13 and 17 on cytogenetics of myeloma cells...The problem is with high risk cytogenetics, patients do not tend to have very long durable remissions after autologous transplant, usually it is only about nine months to a year on average and then their disease comes back...therefore, it is reasonable to consider maintenance therapy.
Nine months to a year? I knew that was an average and that it was based on history, but I felt quite discouraged at the time. However, as I continued to recover and improve, I thought less and less about this bleak possibility. I did go on to have maintenance therapy using Velcade for six months and it was successful.
Now, it is two years later and I am still in remission with just that pesky lambda light chain beginning to misbehave. Even with my high risk cytogenetics, I am on the long side of the average. I'll take it!
Lily and Her Christmas Tree
I am reminded of the saying "A little knowledge can be a dangerous thing." I have thought of this many times during this Myeloma journey. Best wishes, Carole.
ReplyDeleteYou are so right!
DeleteBest wishes to you,
Carole Leigh
dear carole leigh,
ReplyDeleteyes! take it, and with relish! as to cytogenetics, much has changed in this realm and some of what were thought to be markers of "high risk" are now considered not to be so.
enjoy every moment of your remission. i will be BELIEVING that you will look back many years from now and be even more amazed and thrilled with life, lived fully with a song in your heart that nevers misses a beat with an attitude of gratitude. you are so good at that!
love,
karen, TC
Dear Karen,
DeleteWhat would I do without your ongoing encouragement! I did not know about the change in thinking on some markers not being considered high risk anymore.
Have a wonderful holiday season!
Love,
Carole Leigh
Statistics are for Other people!! Another MM'er I know was told he had six months until he would be finished, and that was over three years ago! So, if your diet allows it, take it all with a grain of salt - LOL! And have a blessed Christmas with sweet Lilly.
ReplyDeleteDear Sandy,
DeleteI will do just that! You have a blessed Christmas too!
Love,
Carole Leigh