tag:blogger.com,1999:blog-53008200437010053392024-03-18T00:30:21.971-04:00My Multiple Myeloma JourneyThe purpose of this blog is to maintain a log of my progress in dealing with Multiple Myeloma and to share my experience with family and friends.Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.comBlogger283125tag:blogger.com,1999:blog-5300820043701005339.post-26675846884136426452024-03-17T13:34:00.000-04:002024-03-17T13:34:49.540-04:00Cycle 5 Day 1I am now in California visiting my son, Brian, so this blog update is a little late. I was at Dana Farber on Friday for my monthly testing, but there were a couple of booboos.The first booboo was that I forgot to collect the 24-hour urine sample that I was supposed to bring to the appointment. That's unfortunate because it is an important indicator of whether my M-spike is under control. Now I'llBill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com2tag:blogger.com,1999:blog-5300820043701005339.post-54323725882729964342024-02-24T21:56:00.007-05:002024-02-24T22:03:39.017-05:00Revisiting the Amp(1q) IssueYou may recall my "Fly in the Ointment" post from Jan. 23, where I bemoaned that I had just discovered that I had acquired the cytogenetic abnormality known as amp(1q). As is my wont, I went online to research that, and what I found wasn't very encouraging.I didn't share with you at the time what I found, but I'll share it now with my newly found perspective. Since I am on a clinical trial with Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com2tag:blogger.com,1999:blog-5300820043701005339.post-45723911217879440922024-02-23T17:57:00.040-05:002024-02-23T18:37:23.009-05:00Cycle 3 ResultsI finally got the last of the Cycle 3 test results today. The 24-hour urine analysis came back as "No monoclonal protein detected", which is the same result as last month. That's great news!However, the serum protein electrophoresis revealed a Gamma M-Spike of 0.10 g/dl. That's also the same result as last cycle. I'm disappointed that it didn't go down, but at least it didn't go up. It is still Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com2tag:blogger.com,1999:blog-5300820043701005339.post-81872328373698847842024-02-17T22:02:00.001-05:002024-02-17T22:02:54.556-05:00Cycle 4 Day 1I started my 4th cycle on the clinical trial yesterday at Dana Farber. Everything went well, as far as I could tell. I couldn't learn much from the early results of the blood tests, but most everything looked okay. so far.I did get one very satisfying result. As you recall, my kappa light chain level had risen over the threshold for MM relapse, which got me into this clinical trial in the first Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com1tag:blogger.com,1999:blog-5300820043701005339.post-58888012735842487732024-01-24T22:33:00.000-05:002024-01-24T22:33:38.885-05:00Silver LiningI want to apologize for my last post. It was a bit negative, so I thought I would balance that with something a little more cheerful. I still haven't been able yet to get ahold of Dr. Richarson's ASH paper about my MeziDaradex clinical trial. His abstract talked about the Overall Response Rate (ORR). ORR is defined as the proportion of patients who have a partial or complete Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com0tag:blogger.com,1999:blog-5300820043701005339.post-25239663746465139592024-01-23T14:48:00.000-05:002024-01-23T14:48:44.602-05:00Fly in the OintmentSo far, I've been very happy with my progress on this clinical trial. However, as one might say, there is a "fly in the ointment".Now that's a phrase I've used unthinkingly for most of my life, but what does it mean, really? On the surface of it, it doesn't seem to make much sense, right? Where did this phrase come from? The answer appears to be Biblical. According to Wikipedia, the likely sourceBill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com0tag:blogger.com,1999:blog-5300820043701005339.post-49034955947458576352024-01-17T22:00:00.003-05:002024-01-17T23:20:12.247-05:00Cycle 3 Day 1I was at Dana Farber today for the beginning of my 3rd cycle on the MeziDaradex clinical trial. It was a long day. I got there at 1:00 and didn't get out until after 6:30! They were short-staffed and everything was backed up. I brought in a 24-hour urine sample, and the analysis of that along with my blood serum protein electrophoresis results will give another data point on my progress to date. Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com0tag:blogger.com,1999:blog-5300820043701005339.post-54093752183084283262023-12-31T13:18:00.001-05:002023-12-31T13:25:10.043-05:00COVID GapSince my positive COVID test on December 14, I have been exiled from Dana Farber
until January. Since then, I have been wearing the badge of dishonor and shame.I wasn't really sick, mostly just tired and
lethargic. After a few days, I felt better, but to my dismay, I still tested positive for COVID on December 21. I had no choice but to cancel my Christmas
lunch that day with my good friends and Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com2tag:blogger.com,1999:blog-5300820043701005339.post-1869032919562802322023-12-16T23:12:00.003-05:002023-12-17T08:26:48.983-05:00Bone Marrow Biopsy (Part 2)This past Monday, I was scheduled for the dreaded bone marrow biopsy. Since I had decided to take drugs, Holly drove me in in the morning for my first appointment. When it came time for the biopsy, I was given "conscious sedation", which consisted of an IV of Fentanyl (for pain) and Versed (for relaxation and memory block). Wow, what a difference! The procedure was a piece of cake. I'mBill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com0tag:blogger.com,1999:blog-5300820043701005339.post-71359270644175019662023-12-07T19:57:00.002-05:002023-12-07T20:28:10.842-05:00Looking GoodOn Monday, I began my second 28-day cycle of the Mezi/Dara/Dex clinical trial at Dana Farber. I had several tests done to monitor my progress after the first cycle. They only update these tests once every cycle, so this is my first real snapshot of how I'm responding. Some of the results just came in today, so I thought now would be a good time to update my blog.Multiple Myeloma (MM) is a cancer Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com2tag:blogger.com,1999:blog-5300820043701005339.post-6987127046730868362023-11-21T19:12:00.003-05:002023-11-22T10:11:37.946-05:00Back in the Saddle Again!I didn't update my blog last week when I got sent home for low white blood cell
counts. I didn't want to scare anybody. I went back to DFCI yesterday hoping to
resume my clinical trial treatment.
Fortunately, my low white blood cell and neutrophil counts had completely
recovered to their normal values. The Neupogen
shot I got last Monday probably helped. I'm also feeling better from my Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com1tag:blogger.com,1999:blog-5300820043701005339.post-43461783656696838382023-11-06T19:20:00.001-05:002023-11-06T19:45:53.517-05:00Early BirdIn my last post, I said I'd let you know what the high-dose 40mg of dexamethasone would do to me. I then went to bed and slept like a baby. Oh well, who's to figure?I worked out a schedule for taking the Mezigdomide pills. I kept them chilled in my bathroom overnight. When I got up to pee at my usual time around 5:30 or so, I took the pills and went back to bed. When I got up later, I was able toBill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com2tag:blogger.com,1999:blog-5300820043701005339.post-34621494318967016022023-10-31T01:29:00.002-04:002023-10-31T01:29:39.025-04:00Let the Games BeginYesterday was my first day at Dana Farber for Cycle 1, Day 1 (C1D1) of my
Mezigdomide/Daratumamab/dexamethasone (Mezzi/Dara/dex) clinical trial. I started
this trial just in time since the trial is closing to any more applicants after today! Phew! I feel very fortunate. Thank goodness for Dr. Richardson. It
took most of the day. By "most of the day" I mean I was there from 7:30 a.m.
until 7:Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com4tag:blogger.com,1999:blog-5300820043701005339.post-25815644099303976482023-10-14T23:47:00.002-04:002023-10-15T00:11:50.409-04:00Bone Marrow BiopsyI am now officially enrolled in the Mezi-Dara-dex clinical trial! I made it! My first treatment is scheduled for Monday, October 30, followed every week on Mondays for the next two months. However, I needed to go in for one more test beforehand: a bone marrow biopsy. So Friday morning I went into Dana Farber for this procedure.Let me tell you about this. I laid flat on my stomach while the Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com0tag:blogger.com,1999:blog-5300820043701005339.post-91167111956164170262023-10-04T18:07:00.000-04:002023-10-04T18:07:18.214-04:00I've Relapsed!I met with Dr. Richardson at Dana Farber yesterday to enroll in the Mezigdomide (Mezi) clinical trial. In anticipation of my MM relapsing, I signed all the consent documents. I also went through a battery of tests yesterday and today, including providing a 24-hour urine sample, a transthoracic echocardiogram, supplying at least 20 vials of blood (a new record!), an X-ray skeletal survey, and an Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com3tag:blogger.com,1999:blog-5300820043701005339.post-25896681235903925122023-09-20T18:55:00.000-04:002023-09-20T18:55:05.581-04:00I'm Back!It has been over 3 years since I last updated this blog. Fortunately, I have remained in remission from Multiple Myeloma (MM) for all this time. I am an extremely lucky guy to have stayed in remission for more than 11 years. It's more than I could have possibly hoped for. However, all good things must come to an end. Over the past 6 months, I have noticed a steady deterioration in Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com0tag:blogger.com,1999:blog-5300820043701005339.post-11185410247996717052020-03-21T18:25:00.000-04:002020-03-21T18:41:46.359-04:00Another Long Absence
It has been almost a year since I updated this blog. I apologize for the long absence. Fortunately, since then I have continued to be in remission from the MM, so there has been nothing new to report. That is the main reason I haven't updated this blog for so long. By the way, yesterday was the 8th anniversary of my stem cell transplant, so Happy Birthday to me!
WhileBill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com3tag:blogger.com,1999:blog-5300820043701005339.post-36040226229688123892019-04-19T22:25:00.000-04:002019-04-19T22:59:45.252-04:00I'm BackI have been subtly reminded (well, maybe not so subtly) that it has been over 4 months since my last post. I confess. It's true. What can I say? Time just flies when you're having fun, right?
Well, maybe it hasn't been so much fun. There have been some major changes in my life that have nothing to do with MM. Gretchen and I are now separated. There! &Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com6tag:blogger.com,1999:blog-5300820043701005339.post-45547115649431906992018-12-15T22:42:00.000-05:002018-12-15T22:44:08.069-05:00Richardson VisitLast week I met with Paul Richardson and his fellow, Tom Garcia, to discuss my options for Revlimid maintenance going forward. This is the first time I had met Tom, who has worked with Paul for the last 3 years. He was very impressed with how well I am doing. One area I discussed with Paul was whether an MRD test would be clinically useful in determining whether or not I should Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com2tag:blogger.com,1999:blog-5300820043701005339.post-18022853185468924072018-12-04T23:47:00.000-05:002018-12-04T23:59:53.752-05:00Sticker ShockI've been a really lucky guy. I have been in remission from multiple myeloma for over 6 years now. One of reasons may be that I have been fortunate to be on a clinical trial that has provided me with continuing maintenance using the drug Revlimid on a daily basis free of charge over that time. As you may know, Revlimid is an exorbitantly expensive drug, one of the most expensiveBill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com7tag:blogger.com,1999:blog-5300820043701005339.post-4346178748209987102018-08-17T00:41:00.000-04:002018-08-17T00:48:24.439-04:00Sword of DamoclesI'm going to start this off with a good story. For the past seven years, I have been getting infusion therapy for my MM at Dana Farber, most recently with Zometa (bone building) infusions every 3 months. For all this time, Heather has been my primary infusion nurse. She has been a constant presence in my MM journey, and I have gotten to know and care for her. She has been Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com12tag:blogger.com,1999:blog-5300820043701005339.post-62200533418032159522018-03-20T23:48:00.000-04:002018-03-20T23:48:18.272-04:00Habitat TripLast weekend, we attended a birthday party for one of our friends' daughter, Annabella. She was a lovely young lady celebrating her 6th birthday. Now it's my turn. Today is the 6th anniversary of the stem cell transplant that gave me my new immune system! I call it my "second birthday". Happy Birthday to me! (I've decided to forego the cake and candles.)  Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com3tag:blogger.com,1999:blog-5300820043701005339.post-30397815692031250752018-01-24T14:30:00.000-05:002018-01-24T15:50:00.084-05:00Amazing TripHere I am posting barely a month removed after my last post. Will wonders never cease? I'm pinching myself to see if i'm really doing this.
Bangkok Temple of Dawn
We just returned last week from our Viking River Cruise in Southeast Asia. It was the trip of a lifetime for us! We started with an amazing 3-day pre-cruise add-on to Bangkok, Thailand, where we took a long Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com8tag:blogger.com,1999:blog-5300820043701005339.post-77124109617637258952017-12-15T23:13:00.000-05:002017-12-16T06:17:27.243-05:00Is Anybody Still Listening?I was somewhat relieved to discover that my blog account has not been mothballed due to my long absence. It's been seven months since my last update. My how time flies! So, here I am, still alive and kicking. I've had a lot of encouragement over the past few months to update my blog, but somehow I have kept procrastinating. I have finally overcome whatever mental or Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com13tag:blogger.com,1999:blog-5300820043701005339.post-74093560344430400932017-05-13T00:19:00.000-04:002017-05-13T00:39:37.188-04:00Long AbsenceIt has been so long since I last posted that I almost forgot how to find this blog site. I could say that it has been too long, but that would grossly understate the situation. Anyway, like a Phoenix, I have arisen from the ashes.
Early arrivals at our tent
The MMRF Boston 5K Run/walk was held at Carson Beach in South Boston on April 30. This was our second year for this Bill O'Halloranhttp://www.blogger.com/profile/04601120572341459383noreply@blogger.com4