Today is the five week anniversary of my discharge after the high dose chemo and stem cell transplant. And here’s what’s going on.
The fatigue factor continues to gradually lesson, but is still there. My taste buds are now making a nice recovery and are almost back to normal. I have a slightly sore throat, and yesterday I had some chills, so I may have a small infection. No abnormal temperature, which would have triggered a call to the Docs. And after taking some advil I felt OK. Since I am seeing one of the Memorial oncologists on Wednesday, I will take the throat thing up with him if it’s still around.
On Wednesday I start the rituxin treatment – once a week for four weeks. That’s given by IV and takes about three hours. It will be at the Phelps/Sleepy Hollow MSK branch, so it’s pretty easy from a logistics standpoint. The rituxin therapy will be repeated in four months. And then that’s it except for follow-up “check-ups.”
What’s the future outlook?
An excellent question. The answer is: guarded and murky.
Today, the lymphoma is in complete remission. No sign of it. However, almost certainly all the CA cells have not been eradicated (that’s the reason for the rituxin follow-up. To kill more cells). While a couple of Docs have hinted that the high dose chemotherapy might be the end of my problems, the main lymphoma guru treating me, Dr. Zelenetz, has emphatically stated that mantle cell lymphoma cannot be eradicated.
Before I began chemotherapy Dr. Z went over the range of outcomes. He actually graphed it out by hand on a piece of paper, and I did a credible job of using the word program to show his drawing, but unfortunately typepad seems to not be enabled for drawings, and I was unable to cut and paste the graph into this posting. So you’ll just have to follow this:
Without the high dose chemotherapy: essentially everyone goes into remission, but the recurrence rate is 100% in four to six years. And for many people, much more quickly.
With the high dose chemotherapy (what I had – requires the stem cell transplant): the recurrence rate is an even (graphic) slope of 10% a year, so by end of year ten no one is in remission and everyone has recurred. In other words, in two years, 20% recurrence among patients, in five years 50% recurrence, and everyone at the end of ten years.
When Dr. Zelenetz went over this, I said to him “You mean I could go though all this chemo and the lymphoma could come back in a year?” And he said “Yes.”
So that was pretty sobering.
Some additional points.
Like all oncologists, Dr. Zelenetz is very cautious in establishing expectations. I have found that oncologists tend to be a pessimistic bunch (who can blame them?). They want to give you hope, but not heightened expectations. And they don’t make written-in-stone long range predictions.
And Dr. Z is certainly cut from that cloth. In fact I told him, “Dr. Zelenetz, it’s good to be a moderate pessimist because then all your surprises are nice ones.” And he didn’t disagree.
For example, Dr. Z. said I’d need three sessions of the RICE chemotherapy protocol, and I only needed two. He didn’t tell me up front, that one-third to one-half of people need only two (which is what he told us when it was determined I’d only need two), he just said there would be three RICE sessions. So only two was a nice surprise. He was emphatic that the high dose chemotherapy would require a 30 day hospitalization, and even after the transplant physician said “about three weeks”, Zelenetz said “four weeks”. I got out in 20 days, so another nice surprise.
And I do have the indolent version of MSL, which may mean the surviving cells will be slower to rally and build up to detectable levels. No one has actually said that, it’s simply something I have construed. I could be completely wrong.
So I think I am being reasonable and rational when I tell people that we are gunning for five to ten years of symptom free remission. That’s the goal. It’s not guaranteed. Will I be disappointed if the lymphoma is back before that time frame? Disappointed is an understatement. Will I be shocked or surprised? No.
Mantle cell has only been a separately classified lymphoma since the early or mid 90’s. So beside the fact that they don’t have that much long range data, the hope (my hope!) is that if I do get a good time frame of remission, there will be some new or improved therapy for a second go-around. Especially a therapy that does eradicate the cells.
Anyway that’s my future tentative outlook. As I get more information, I will modify my view.
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