Hello folks. Honestly I'm not sure what's happened to the time but I'm alive and well!
Some observations from the last month:
* All markers still look good as can be. Platelets are a little low, howevering around 110, and didn't recover when I took the week off Revlimid but sometimes that lags a bit so we'll see how they look today. Platelet suppression is the biggest hematologist issue in my maintenance. I will -- I promise -- be putting a graph up showing platelets over time. Anyhow, in contrast, WBC has been a little higher, around 4-5 which is in the low end of normal but definitely normal. I would say this could be in response to fighting something off, except my CRP is very low indeed. Curious, but I ain't gonna knock it.
* In related news, I have gone a long stretch now without bronchitis or any cold / cough. This is remarkable and much appreciated! My little boy has had a nasty cough for about a month and somehow I've not contracted it. Could it be my immune system is righting itself, even through the haze of immunosuppressant medication that I'm on? I looked back to check the other Ig figures -- IgG remains where it should be and has been which is to say mildly suppressed in the 550-650 range. IgA was obliterated during primary therapy and now sits at very low normal around 100, but while I first thought this might have been a slow recovery that now gave me the stuff to fight off colds, it has really been bouncing around in the 90-100 range for the past year. IgM, likewise, was obliterated during therapy and remains quite low (below the point at which they begin measuring, which is 26) although it has peeked up into the range of measurement from time to time. So it's not these markers. I don't get T-cell or CD cell information other than in Arkansas, so perhaps I'll see what that looks like when I return there.
* I had a terrific brunch with a fellow MM traveler, EW, in Los Angeles a couple of weeks ago. He's been kind enough to comment here from time to time and has followed the blog for a while. He's an excellent guy and has a very interesting story, involving two doctors mentioned here from time. One of them, of whom I am not a fan (Dr. JB), is on the opposite end of the spectrum from Dr. BB. He thinks transplants are a waste of time. He pursues what I will call a trial and error approach to different combinations of drugs. Personally, I think his approach is dead wrong, but he is a doctor and I'm not, and as I have remarked to a friend that is less of a fan of transplants than I, if Dr. JB finds a cure, I will be in the front row cheering him on. Anyhow, upon his initial consult, Dr. JB looks at EW and says "ehhhh....I give you three to five years." What a jerk!!! Thankfully, EW went for a slightly stronger approach, even though he has not undertaken a transplant. And it's more than three to five years later, I believe, and EW feels great and has the disease under control. So...take that, Dr. JB!
* I was saddened to read in the MMRF's latest blurb that "Myeloma is incurable." With respect to Kathy, this is factually incorrect, a slap in the face to the work being done at Arkansas and elsewhere, insulting to those of us who have undergone aggressive treatment, and dangerously mis-informative to newly diagnosed patients. It would be accurate to say there is no definitive cure, or to suggest that there is no treatment that can cure everybody, or even that there are controversial treatments which might represent a cure for some patients but not all. However it is simply factually incorrect to state it the way they have. I understand their need to maintain urgency in what is a fundraising newsletter, essentially, but it is depressing nonetheless!
* Lastly, I am pleased to note that by sticking to drinking as much water as possible, I have now lost 1 stone 6!
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Good upbeat post Nick and so glad to read all it contains with regards to your stats and to know that you are clearly maintaining your good remission. As to the loss of 1 stone 6 pounds, that would suit me very well. So I must change those G&T's to water, not so much fun but seems the way to go! Keep well Nick.
ReplyDeleteTo be fair, JB said 5 years before I relapse. Not that there is much difference in degree of arrogance. Either way, I intend to prove him wrong.
ReplyDeleteI've met MM'ers who had allos and have been MM free for many years. I definitely think allos can cure MM too though, of course, we all wish they were safer. Anyhoo, old theories die hard. I'm sure it took a long time for people to believe the world wasn't flat too.
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