{"id":4686,"date":"2006-03-03T23:49:54","date_gmt":"2006-03-03T23:49:54","guid":{"rendered":"https:\/\/tomfarandasfolly.com\/?p=4686"},"modified":"2025-09-25T14:43:14","modified_gmt":"2025-09-25T14:43:14","slug":"five_week_out_o","status":"publish","type":"post","link":"https:\/\/tomfarandasfolly.com\/?p=4686","title":{"rendered":"Five weeks out of the hospital and a look at my future outlook"},"content":{"rendered":"

Today is the five week anniversary of my discharge after the high dose chemo and stem cell transplant. And here\u2019s what\u2019s going on.<\/span><\/p>\n

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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\u2019s still around. <\/span><\/p>\n

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On Wednesday I start the rituxin treatment \u2013 once a week for four weeks. That\u2019s given by IV and takes about three hours. It will be at the Phelps\/Sleepy Hollow MSK branch, so it\u2019s pretty easy from a logistics standpoint. The rituxin therapy will be repeated in four months. And then that\u2019s it except for follow-up \u201ccheck-ups.\u201d<\/span><\/p>\n

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What\u2019s the future outlook? <\/span><\/p>\n

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An excellent question. The answer is: guarded and murky.<\/span><\/p>\n

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Today, the lymphoma is in complete remission. No sign of it. However, almost certainly all the CA cells have not been eradicated (that\u2019s the reason for the rituxin follow-up. To kill more cells). While a couple of Docs have hinted that the high dose chemotherapy might<\/u> be the end of my problems, the main lymphoma guru treating me, Dr. Zelenetz, has emphatically stated that mantle cell lymphoma cannot be eradicated.  <\/span><\/span><\/p>\n

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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\u2019ll just have to follow this:<\/span><\/p>\n

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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.<\/span><\/p>\n

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With the high dose chemotherapy (what I had \u2013 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.<\/span><\/p>\n

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When Dr. Zelenetz went over this, I said to him \u201cYou mean I could go though all this chemo and the lymphoma could come back in a year?\u201d And he said \u201cYes.\u201d<\/span><\/p>\n

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So that was pretty sobering. <\/span><\/p>\n

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Some additional points. <\/span><\/p>\n

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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\u2019t make written-in-stone long range predictions.<\/span><\/p>\n

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And Dr. Z is certainly cut from that cloth. In fact I told him, \u201cDr. Zelenetz, it\u2019s good to be a moderate pessimist because then all your surprises are nice ones.\u201d And he didn\u2019t disagree. <\/span><\/p>\n

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For example, Dr. Z. said I\u2019d need three sessions of the RICE chemotherapy protocol, and I only needed two. He didn\u2019t 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\u2019d 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 \u201cabout three weeks\u201d, Zelenetz said \u201cfour weeks\u201d. I got out in 20 days, so another nice surprise. <\/span><\/p>\n

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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\u2019s simply something I have construed. I could be completely wrong.<\/span><\/p>\n

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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\u2019s the goal. It\u2019s 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.<\/span><\/p>\n

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Mantle cell has only been a separately classified lymphoma since the early or mid 90\u2019s. So beside the fact that they don\u2019t 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.    <\/span><\/span><\/p>\n

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Anyway that\u2019s my future tentative outlook. As I get more information, I will modify my view.<\/span><\/p>\n

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   <\/span><\/span><\/p>\n<\/p>\n<\/p>\n<\/p>\n<\/p>\n<\/p>\n<\/p>\n<\/p>\n<\/p>\n<\/p>\n<\/p>\n<\/p>\n<\/p><\/p>\n","protected":false},"excerpt":{"rendered":"

Today is the five week anniversary of my discharge after the high dose chemo and stem cell transplant. And here\u2019s what\u2019s 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, […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[],"class_list":["post-4686","post","type-post","status-publish","format-standard","hentry","category-my-lymphoma-and-related-medical-stuff"],"_links":{"self":[{"href":"https:\/\/tomfarandasfolly.com\/index.php?rest_route=\/wp\/v2\/posts\/4686","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/tomfarandasfolly.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/tomfarandasfolly.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/tomfarandasfolly.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/tomfarandasfolly.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=4686"}],"version-history":[{"count":1,"href":"https:\/\/tomfarandasfolly.com\/index.php?rest_route=\/wp\/v2\/posts\/4686\/revisions"}],"predecessor-version":[{"id":6547,"href":"https:\/\/tomfarandasfolly.com\/index.php?rest_route=\/wp\/v2\/posts\/4686\/revisions\/6547"}],"wp:attachment":[{"href":"https:\/\/tomfarandasfolly.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=4686"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/tomfarandasfolly.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=4686"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/tomfarandasfolly.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=4686"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}