I have reached my remission anniversary, now two years. I have been taking 25mg Revlimid all along as maintenance, along with Dex, recently reduced from 40mg to 20mg. Next cycle we will start on 12mg Revlimid for maintenance. All my protein readings have remained at 0.00.
My unrelated brain tumor is still causing vision symptoms, but I can get by, so I am taking the wait and see approach. Surgery seems too risky. When the time comes, gamma knife may be the choice, then after maybe 6 months to see if that improved symptoms, eye muscle surgery to align the eyes.
Brian's Myeloma Blog
Tuesday, October 15, 2013
Friday, July 26, 2013
Wow, been a while since I wrote anything.
I guess that is because having nothing new is boring. And boring is good in my case. I am still in remission, it will be two years in October. I continue on 25mg Revlimid; dex has been cut from 40 mg to 20 mg. Side effects are few; insomnia and a little cramping on dex days. Hematocrit is a little low at 35%.
Unfortunately, I have a new problem. Double vision has been tracked down to either a schwannoma or a meningioma on the 3rd cranial nerve. Yes a benign tumor deep in my head. I'm just starting to figure out the options and ramifications of each. I can do: nothing, craniotomy and surgery, or gamma knife. Maybe go with gamma knife because it sounds cool? It is slow growing so I don't have to rush. Sticking tools through my brain (surgery) to get in deep enough sounds like potential for problems. Maybe the myeloma takes me out soon enough I don't even need to worry about it, but the remission seems to indicate otherwise.
Yes, this is my myeloma blog, but it will probably be more about this new challenge for a while because, for me at least, it is not boring. I was okay with boring. I'm not quite as okay with this.
I have my med records on this ordered so I can start having some informed conversations with others. Wouldn't it be nice if there was consensus among all the experts as to what should be done and who should do it?
I guess that is because having nothing new is boring. And boring is good in my case. I am still in remission, it will be two years in October. I continue on 25mg Revlimid; dex has been cut from 40 mg to 20 mg. Side effects are few; insomnia and a little cramping on dex days. Hematocrit is a little low at 35%.
Unfortunately, I have a new problem. Double vision has been tracked down to either a schwannoma or a meningioma on the 3rd cranial nerve. Yes a benign tumor deep in my head. I'm just starting to figure out the options and ramifications of each. I can do: nothing, craniotomy and surgery, or gamma knife. Maybe go with gamma knife because it sounds cool? It is slow growing so I don't have to rush. Sticking tools through my brain (surgery) to get in deep enough sounds like potential for problems. Maybe the myeloma takes me out soon enough I don't even need to worry about it, but the remission seems to indicate otherwise.
Yes, this is my myeloma blog, but it will probably be more about this new challenge for a while because, for me at least, it is not boring. I was okay with boring. I'm not quite as okay with this.
I have my med records on this ordered so I can start having some informed conversations with others. Wouldn't it be nice if there was consensus among all the experts as to what should be done and who should do it?
Monday, October 8, 2012
Thursday, March 1, 2012
A milestone has been reached.
All my numbers continue to look great. While I will continue to take 25mg Revlimid and 40mg Dex on the first day of the first 3 weeks of a 28 day cycle, I do not need to see my doctor for 3 months. I will still get monthly blood tests, but the doctor will call me if anything needs to change.
Sounds pretty good.
All my numbers continue to look great. While I will continue to take 25mg Revlimid and 40mg Dex on the first day of the first 3 weeks of a 28 day cycle, I do not need to see my doctor for 3 months. I will still get monthly blood tests, but the doctor will call me if anything needs to change.
Sounds pretty good.
Tuesday, February 14, 2012
THE doctor tells me everything is still good. M protein 0.00. He says jokingly I'm too healthy for him to treat me.
Yesterday started week 3 of cycle 2 on 25 mg Revlimid and 40 mg Dex. Felt sick most of the day, first time that has happened. Very bad stomach ache off and on. treated with antacid.
And almost no sleep last night. Feeling better today
Yesterday started week 3 of cycle 2 on 25 mg Revlimid and 40 mg Dex. Felt sick most of the day, first time that has happened. Very bad stomach ache off and on. treated with antacid.
And almost no sleep last night. Feeling better today
Tuesday, December 13, 2011
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