I saw my oncologist yesterday and expected the usual visit. It wasn't. I was on Revlimid but had to be taken off because it was effecting my liver and I had spots from head to toe. The Revlimid was working, though. My tumor markers were going down. Then she brought up the fact that that Revlimid inhibits stem cell production. All of a sudden she's bringing up a bone marrow transplant. Wow.
I have an extremely rare neurological disease and she's working with that along with MM. She really doesn't know how the other chemo's will affect me. I'm a first, how lucky. So now it will be trial and error. She's going to try Velcaid.
Wow, you certainly get hit with the full force of things .Its interesting that your doctor said about the effects of revlimid on stem cells. I read an article about this in Jan. while at hope lodge trying to get enough stem cells for a transplant. They had just finished the research weeks before, I had been on revlimid for 6 months. Maybe that is why they had so many problems, they had to use mobilz on me, lots of long teem risks including the a significant risk of developing an untreatable type of leukemia. I am glad to hear that your doc is staying up on the new issues. Have they had you on decadron, it is usually taken along with velcaid and revlimid.
Rodney, I've been on steroids and she said with the Velcaid I'll be on something else. Anti virals? And I don't know what else. I had so much to process. I hope mobliz worked for you and that you don't get leukemia. That's scary.
I've kind of put MM on the back burner and haven't worried a whole lot. I just live my life. But this last visit brought home that MM is nothing to sneeze at, it's a very serious disease.
I have an extremely rare neurological disease called olivopontocerrabellar degeneration. My doctor is trying to figure out the best way to treat MM without effecting the other condition. It's a bit difficult. There have been no studies or nothing for her to go on, it's all going to be trial and error.
Rodney, please let me know how you're doing. Did you get enough stem cells? When's your transplant? Jackie
Yes I got enough and completed 1 stem cell, doc would have liked to do 2 but I did not get enough for the second. However with the results of the first he most likely would not have completed the second anyway. The transplant isn't that bad. I posted on scared caregiver disscussion(here)everything that happened. It is mostly non invasive only shots and the side effects can be controlled, for the biggest part. However it is not always100% effective as mine was not. My transplant was completed around the middle of Jan. then I spent 2 wks in the hospital, I was able to return to work on the 18 of Feb., I have avoided crowds and tried to minimize infections and still tire easily but other than that not bad enjoying life. MM is big time bad and it is sneaky, you must be very vigilant however our angels in the medical field are gaining ground, the day will soon come when it is considered chronic, least I hope.
God Bless and good luck, check out the myeloma beacon web site, its good also- a nice add on to here
Rodney, thank you for your comment, it makes me feel a whole lot better about a transplant. I'm so sorry about the success of yours. Where is the scared care giver? I would love to read your posts. I'll try a search on this site. Thanks Rodney, Jackie