Two unrelated little things, which we'll do in reverse order.
I will be getting IVIG a week from Tuesday, along with Velcade, both administered by Dr. G at UCLA's hospital. IVIG is evidently a money loser as an infusion unless it can be done in a hospital where other services are provided and charged for. I'll be getting my Velcade done then as well. The IVIG is a SIX HOUR infusion so it's gonna be a long, dull day for the kid.
I am off Revlimid this week, so I am not taking the magnesium supplements. So far, no leg cramps. I'll go back on them when I resume Revlimid on Tuesday. Hopefully my counts can recover a bit this week -- WBC, HGB and Platelets are all lower than I'd like.
Now, as for the dime-sized black spots on my butt, I figured it was time to do something about them or at least look into the situation. My first bone marrow biopsy was done by Dr. SH in Beverly Hills and it left no mark. Subsequent to that, between bone marrows and gene arrays and fine needle aspirates I have probably ten black spots on my butt. It's not the end of the world, but I also look (as I've said before) that I went hunting with Dick Cheney and he unloaded a bunch of buckshot in my backside.
The dermatologist told me there are pigmentation issues with these scars and prescribed a bleaching cream that can be used to touch them up. He also noticed there are indentations in these areas, which can be filled in. I thought I'd try to clear up the color first, since that sounded less invasive. So I bought some goop and we'll see if that does the trick. A thousand words will have to suffice in lieu of a picture, I'm afraid.
Closing this back around to Dr. G at UCLA, I spoke with him a bit about my therapy. He said that regardless of whether or not I was cured, I was in "a very good place." Now, he is a general Hem / Onc (probably less Hem than Onc) so he's not a Myeloma specialist per se, so frankly his opinion isn't worth all that much in terms of illuminating the nuances of my therapeutic choices and their ramifications. But it's all good at this point. I find myself checking the most recent slide from Arkansas that appeals:
This is probably a fairly easy chart to interpret. It shows compete remission duration over time for low-risk versus high-risk patients in the Total Therapy 3 trial. With five years of data now, 90% of low risk patients that achieve complete remission remain in complete remission five years later. And the curve is flat after about 40 months or so...that is, no patients lost remission after 40 months. Of the 209 patients that remained in remission at the 40 month period, all 209 patients are still in remission at 60 months. That's not coincidence. That's cure.
Which brings me to the following chart:
Very good news for this sub-group of patients.
This chart, unfortunately, also points out the tremendous amount of work remaining to help those with genomically-defined high risk disease -- as well as those who lose remission despite having a low-risk signature. Fortunately new classes of drugs are coming out that will hopefully tell a much brighter story for Myeloma sufferers!
Nick:
ReplyDeleteGood luck on the 6 hour infusion... Bring a good book or some head phones. Hey.. at least he black marks are on your butt... Would be really bad if they were on a place for most people to see, and remember that you are already married so that's good. :-)
If you connect the dots, what do you get?
ReplyDeleteWell, no nude bathing anymore! If you bleach them out and lay out sunny side up, they'll come right back! :) How about getting some cool tats there?
ReplyDeleteHow far apart are the transplants done in Total Therapy III? I have started to think that if after a year since my initial one, if I were to move ahead again soon, it would be TWO, and that should better my odds over all, using the TT3 thinking, but how close together do they do them? Not that I really WANT another one. But if there were a chance for CR... you know.
ReplyDeleteI sort of want to see the black butt dots. But not on me of course. You should post a pic. Wear a thong and have some fun!
NIck:
ReplyDeleteI was diagnosed in 1998. There were very few options at the time and prognosis was not good. I had an x-ray done for a part-time job and the doctor who read the results asked if I had been shot in Iraq - lots of holes.
I had the tandem process done at City of Hope in November 1999 & Late January 2000. During the prep. stages for the transplant in early 1999 my immune system totally tanked and I needed 13 IVIG sessions very close together. During this time must have gone out without my slippers or something. I developed three pneumonias: CMV, pneumocystis carnelli, and a herpes related variety.
I am 63, any aches and pains that have resulted from the experimental treatment at the time are inconveniences. I was a high school principal when this started so I share the Type A personality.
Four things I learned through my experience: A. Prior to any transplant get a good tasting mint to suck on. Not a Ricola. It was all my wife had the first time. B. I went in a round peg and came out a square peg meaning one is changed forever. C. Do not let myself get run down by work, play, worry, or whatever. I buried myself in work. I completed my doctorate forcing myself to read a great deal of nonsense. I have experienced the loss of many cancer buddies who tried to get back onto the gas too hard and wore themselves down to the point they could not recover. One was a 38 year old go-getter realtor who had a cold and it got away from her. D. Through cancer I have met so many wonderful people. They were there. I just missed them, or didn't see them, or didn't watch what they were doing. Through cancer, I have been blessed with interacting with such a wide range of people from throughout the United States, the Pacific Rim, even to South Africa who are just wonders in their kindness and concern for others.
I do hope your butt deal works out. You are an obvious leader with charisma to make a lot of good happen to seek cures and to help others. Off the gas a bit, so you don't wear out.