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Tuesday, November 21, 2023
Monday, November 6, 2023
In 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 to have normal coffee and breakfast. It worked out well. This week is my week off, so I don't have to worry about it.
Today marked Cycle 1 Day 8 of my clinical trial at Dana Farber. I had spent the weekend at the farm with Jeff, Christine, and Khoren closing it up for the season. I hitched a ride to upstate New York with them and planned to spend last night in Boston with Holly and Ryan. However, they weren't feeling well, so I drove my car home instead from Lowell.
My first appointment was at 6:50 a.m., so I set my Alexa alarm for 5:30. I awoke with a start and saw the clock said 5:45! I didn't hear Alexa go off. I leaped out of bed, hurriedly dressed, grabbed my phone and computer, and jumped in the car. I was relieved to see that my GPS said I would get there in an hour.
About 40 minutes into the drive, I noticed something a little weird. It normally gets light here around 7:00 a.m., but with the clocks set to Standard Time, it should now be around 6:00. My car clock said it was 6:30, but it was still pitch black outside!
Then dawn broke over Marblehead! It was 5:30, and none of the clocks in my apartment or car had been set back. My computer and phone had been on chargers, and my watch was in sleep mode, so I hadn't checked the time on them. Of course, Alexa knew it was only 4:30. Why didn't I figure that out? Duh!
Despite my bumbling early start, today was a much shorter one at Dana Farber. I didn't need to wait around for hours monitoring for side effects, so I got a blood draw, premeds, then the dex dosage, waited the prescribed hour to get the Dara injection, and left. The whole process only took about 3 hours, which should be the norm going forward.
I was curious about what my test results might look like one week into my clinical trial. I was hoping at the very least that the upward trends of my Kappa light chains and M-spike might have slowed a bit or even leveled off.
I haven't gotten my monoclonal M-spike electrophoresis results yet, but I did get my light chain report this afternoon on the Patient Gateway. I was blown away. My Kappa light chains have dropped all the way back into the normal range! Here is the graph of past results:
|Kappa light chain history|
This is so exciting!!! The entire last year's history of my Kappa light chain inexorably rising has been undone just one week into the trial. This was the only indicator that my MM had relapsed. Does this mean I may be back in remission already?
I don't want to get too carried away here. This is just one parameter to track. There may be other indicators that are not responding as well (M-spike?). Who knows? But I sure am happy about this! Am I on the right clinical trial or what? Yahoo!
Tuesday, October 31, 2023
Yesterday 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 7:00 p.m. It was a long day for a couple of reasons. First, after my blood draw and meeting with the nursing team, I went to the Infusion Center at around 10:00 a.m. to get my study drug (Mezzi) along with the subcutaneous Dara injection and dex. The Mezzi and dex are both in pill form. However, Dr. Richardson hadn't yet put in the order for the Mezzi, so I had to wait until 12:15 for the prescription to be filled. In the meantime, I had to take a bunch of pre-meds, including Decadron (dex), Tylenol, Singular, and Benadryl.
After I got the Dara shot in my stomach at 12:30, I was forced to wait for 6 hours of observation to see if I had any adverse reactions. It wasn't completely boring, because the nurse, Dannielle (who is great!), had to take triplicate EKGs (!) along with various blood draws every hour! I was also able to squeeze in a Zometa infusion while there.
I had a window in the infusion room, so I got to watch the traffic outside, which was marginally more exciting than not having a window. I had a fold-down chair, so I tried to nap a couple of times between procedures. Fortunately, I had no reactions to the Dara, so I was prepared to go home at 6:30.
The EKG machine they use is old and slow. The first reading seemed to indicate that I was having a heart attack! I felt fine, so I was pretty sure that that was not happening! All subsequent readings were fine, however, so they determined that it was just a glitch artifact of the EKG machine. So far so good. However, just as I was about to leave for home, I was told to wait for the EKG doctor to go over all the charts again to verify that I could go. Fortunately, he must have noticed that I hadn't had a heart attack, so he signed off on it, and I got on the road around 7:00 p.m.
Now that I'm on this clinical trial, I must start taking a bunch of additional meds. I already take about 10 prescriptions and supplements every day. Along with the Mezzi pill, which I must take daily for one week on and one week off, I now also have to take acyclovir, aspirin, Bactrim, and Pepsid (I can't take PPIs like omeprazole anymore).
I have to figure out a schedule on how to take these drugs. I'm supposed to take the Mezzi in the morning, and I can't have coffee or any hard foods 2 hours before or after! If I pop the rest of those pills in the morning without eating anything or having my coffee, I will probably upchuck the whole lot! Hmmm.
One of the nurses said that one of her patients wakes up early (4:00 am) to take the Mezzi and then goes back to sleep for a few hours so she can have her normal coffee and breakfast when she awakes. That sounds good to me because I usually stagger into the bathroom around 5 or 6 a.m. to pee. That would be a great time to take the Mezzi.
I am scheduled to go in early in the morning again for the next few weeks. I won't have to do the 6-hour wait again, but at first, the days will include some wait time. After that, I sweet-talked the scheduler, Carmen, (smooth talker that I am) into moving most of my appointments to late morning or early afternoon.
In the meantime, Holly and Ryan, who live in Boston, have insisted that I stay over with them on my early-morning appointment days. I'm very grateful! They are the best! And I get to see my gorgeous and irrepressible 4-year-old granddaughter, Kaia!
|Kaia and Holly|
Saturday, October 14, 2023
I 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 procedure nurse, Melissa, probed for the right spot on my hip bone to insert the "instrument". Here is what it looks like:
This device sports a needle that seems to be much longer than it should be!
The first thing she did was to inject a local anesthetic, first into the muscle, and then deeper into the bone. So far so good. Not too bad yet.
Now I've had these bone marrow biopsies several times before, but it has been quite a few years since my last one. The last time I took some drugs ahead of time to ease the pain. I was able to do that since Gretchen was there to drive me home.
Now that I am alone and hadn't arranged for someone to drive me back afterward, I decided to tough it out like a he-man and do it cold turkey. Maybe it's like women giving birth. They forget how painful it was the last time, so they do it again, or so I'm told.
The thing is, once this instrument of torture dives deep into the bone marrow, the anesthetic doesn't really help. Multiple samples have to be taken and the marrow has to be sucked out. It's quite painful and time-consuming. To make things worse, I had also volunteered for them to take extra samples for research purposes. Duh!
Melissa (the torturer) kept saying, "I'm almost done". I don't know how many times she said that...I lost count. As I lay there gasping for breath, I was mentally kicking myself for trying to macho this out, or maybe I was actually kicking myself... I don't remember.
After it was over, I clambered unsteadily off the torture rack and staggered out of the chamber with my undershirt hanging out of my pants. I didn't care. Next time, just give me drugs, lots of them!
Wednesday, October 4, 2023
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 EKG.
The one test result that I was particularly keen on seeing was the Free-light chain blood test. One criterion for MM relapse is that the involved free light chain (in my case, Kappa) increases by more than 100 mg/L from its normal value.
In my last post, I showed a chart of those results for the past several years. Up until 2023, my Kappa light chain has hovered in the normal range at around 18 mg/L. Then on my last visit in September, it had spiked to 112.8, almost meeting the relapse criteria. As I anticipated, the result from yesterday was 120.7, so I am now in a clinical MM relapse. The good news is that I am now officially enrolled in the Mezi clinical trial before the October 31 cutoff date. I should start the trial in a couple of weeks.
Dr. Richardson was extremely upbeat about this clinical trial. He said that the response rate to this protocol is over 80%, which is very good! He will be presenting trial results at the next ASH conference in December. He also said that this is a good trial for my high-risk t(4;14) cytogenetics. I wish I had recorded his remarks about this because I didn't understand half of what he said. However, the fact that he is confident gives me confidence.
So it begins! I will occasionally update this blog when I have some results to share.
Wednesday, September 20, 2023
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 my blood test results. In August, I got my first sobering hint of what was to come when my electrophoresis results indicated the dreaded "M-spike detected", which meant that there was now monoclonal protein in my blood. I then realized that the party was over. 🥳
As is my wont, I started researching Relapsed/Refractory MM (RRMM) to see what the preferred treatment options are after the first relapse. I found that many oncologists are recommending a regimen using one of the newer drugs, Daratumumab (Dara). A lot of the clinical trials to date have shown very promising results with Dara.
I had an appointment with Dr. Richardson yesterday. While I haven't actually relapsed yet, I was confident that he would want to start some treatment soon, as he likes to hit things hard up front with everything he's got.
Based on my research, I felt that it would be likely that he would recommend a treatment option containing Dara. I wasn't disappointed, but to my surprise, he offered to enroll me in a clinical trial with a new drug, Mesigdomide (try saying that quickly 5 times), coupled with Dara and dexamethasone (dex). This is an early Phase 2 clinical trial, so there aren't any results available yet.
He also offered me an option to enlist in another clinical trial. That one involves Ixazomib (Ninlaro), along with pomalidomide (similar to Revlimid) and dex. This was a blast from the past because Ninlaro was the drug I took in my initial clinical trial back in 2011! It has subsequently been approved by the FDA and is now a standard frontline MM treatment option.
I have to reflect on how fortunate I am to be a patient at Dana Farber and have the world-renowned Paul Richardson as my oncologist. Where else would I be able to walk into my doctor's office and be offered on the spot two state-of-the-art clinical trials to choose from? I'm glad I don't live in Alabama.
After careful consideration, I decided that I wanted to join the first option. I spoke with the nurse today and I'll be making an appointment soon for pre-screening and signing consent forms. I asked her how the results have been to date. While detailed results are closely guarded until ready for publication, she said that her observations were that patients were responding very well to this protocol. That's encouraging!
There is one issue, however. The enrollment window for this trial closes at the end of October. If I am not clinically in relapse by then, I won't be eligible for this trial! So I'm in the uncomfortable position of hoping I relapse by then! Is that sick or what?
I just got yesterday's blood tests back today, and I don't think there is much doubt that I will be clinically relapsed very soon. One relapse criterion is that my involved (Kappa) free light chain (FLC) has to increase by 100 mg/L over its normal value. Here is a chart of this over the last 2 years:
As you can see, I'm perilously close to meeting that threshold. Again, I hate to keep saying this, but how fortunate will I be if I can slip under the wire and qualify for this clinical trial at the last possible minute.
It reminds me of how I slipped into my first clinical trial in 2011. Someone had already signed up for the spot that Dana Farber had, but he had backed out the day before. They would have lost that spot to another cancer facility, but all they had reported was his initials, which happened to be WO. Since I had the same initials, I was able to take his place. the rest is history!
I remain optimistic and upbeat about this. Those of you who know me know that I respond to a situation like this as a problem to be solved and a challenge to be dealt with, not to wring my hands and say "Woe is me!".
I won't wait another 3 years to update this blog. You should hear from me soon!
Saturday, March 21, 2020
Friday, April 19, 2019
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! I said it. I didn't really want to address this in my blog, so I have been procrastinating on updating my posts. But I couldn't really go on posting and pretending that everything is the same as it was could I? I suppose I could have, but that wouldn't really have been fair to you, my loyal (?) readers.
Suffice it to say that I am now living in an apartment in Salisbury, MA. As they say, stuff happens (or words to that effect). It is a difficult time, but I'm glad go say that I will be celebrating Easter Sunday dinner with the family as usual and partaking of our traditional smoked lamb, along with other delicious accompaniments. I'm looking forward to that.
Normally, at this time of year I would be raising funds for the Boston MMRF 5k Walk/Run to be held on April 28. I am very proud to note that over the past three years, Team Epic for Bill has raised about $30,000 to fund Multiple Myeloma cancer research. For that, I am very thankful for the generous contributions from my family and friends. For those of you who contributed, I am very grateful. However, given the recent changes in my life, I have decided not to continue the fundraiser this year. However, I would still encourage you all to contribute to the MMRF in support of this worthy cause. Here is a link to the website if you care to make a donation: https://walkrun.themmrf.org/boston.
|Grandpa with Khoren|
As for me, I am still continuing on my amazing journey of remission from my MM. It's closing in on 8 years since my intial diagnosis. So far, so good. I'm biting the bullet and paying the $730 monthly copayment for the Revlimid, but as long as it works, it beats the alternative!
I'm still volunteering weekly at Habitat for Humanity. I'm becoming a bit of an expert in plumbing (which I used to hate), having helped to install six heat/hot water boiler systems to date. I'm feeling like I could do that in my sleep by now. My next adventure with Habitat will be to help build houses in Romania for 10 days in October. That should be fun!
I'll end this as Jimmy Durante used to say, "Goodnight, Mrs. Calabash, wherever you are".
Saturday, December 15, 2018
For any of you who are concerned that I might choose to stop taking Revlimid because of the cost, rest assured. I'm not going to do that. Life is too precious to take any gambles like that, regardless of cost. Yes it's expensive, but fortunately I can deal with that.
In the process of preparing for our meeting, I did some research on new myeloma results presented at the recent ASH conference held in early December. One paper in particular I found quite interesting. Here is the link: Revlimid, Velcade, and Dexamethasone, Followed By Stem Cell Transplantation, Yields Deep Responses And Considerable Overall Survival In Newly Diagnosed Multiple Myeloma.
This paper describes my treatment regimen almost exactly, although I was on the oral MLN-9708 instead of the infused Velcade for induction therapy. You may recall that I am considered a high-risk patient because of my t(4;14) translocation chromosomal abnormality. Not only that, but I also have the IgA type myeloma, which is more aggressive than the more common IgG myeloma. Those were two things not in my favor at my diagnosis.
Two results from this study got my attention. First, the median duration of remission of patients following stem cell transplant was only about 2 years! That stunned me. Here I am almost 7 years later still in remission.
The second result in this study was that the median overall survival of these patients was 8 years, but for those patients with one or more high-risk chromosomal abnormalities, the median overall survival after the stem cell transplant was only 5 years!
Obviously, I have been taking this way too much for granted. The stark reality of my situation has suddenly crashed down on me. I've been living on borrowed time. I am one extremely lucky dog. Every single day that I remain disease free is a gift. It's up to me to make the most of it.
Tuesday, December 4, 2018
Well, my luck is about to change. I just found out yesterday at my monthly Dana Farber visit that the clinical trial I am on is terminating at the end of this month. That means from now on, I will have to pay to continue with my Revlimid maintenance. That's not good.
After my initial shock, I came back home to determine what financial effect that would have. I am in the process of reviewing my Medicare Advantage Plan options for next year, and I have to make a decision by December 7. I looked at my options on the Medicare website and added Revlimid to my list of drugs. That was an eye opener! Fortunately, I have an Advantage Plan. If I only had Medicare Part B, I'd pay list price and my out-of-pocket cost of adding Revlimid would be about $300,000 next year! Holy crap! How could anyone other than the super rich ever afford that? With the Advantage Plan, my expected out-of-pocket costs for Revlimid will be a "mere" $14,000 next year. Whew! I guess I should be happy, but I'm not. That still comes to about $40 per day.
Celgene has the world by the balls and has consistently increased the price of Revlimid over the years to its currently stratospheric levels. They have been able to do this by cleverly holding on to their patents by requiring monthly surveys to assess safety in using the drug (because it can cause birth defects). Good for them...bad for us.
I don't think that I will qualify for any of the financial aid plans that are available out there, because I'm pretty sure I will be over the income limits. I may look into this, but I'm not hopeful.
Now I have a decision to make. Do I want to keep taking Revlimid at these prices and hope that I stay in remission? How important is it that I continue to do this? Maybe I will relapse even if I do continue to take it. Maybe there is some other maintenance drug that is less expensive and might work. Maybe I'm actually cured and don't need it any more. Or maybe treatment options have improved so much over the last few years that even if I do relapse, my survival chances are good. At what price to I decide take a chance by stopping the Revlimid? These are important questions for me.
Today I scheduled an appointment with Dr. Richardson on December 11 to discuss these issues. One of the things I want to discuss is how deep is my remission. Some patients have reached a state of Mimimal Residual Disease (MRD), where less than one in a million cancer cells can be detected. In that case, treatment options are much more flexible than with less stringent conditions. In fact, there are some who say that a response of that level represents a "cure" for MM. I was never tested for MRD (my remission was based on the standard test of less than one cancer cell in a thousand). I had asked Paul last year about getting tested for MRD, but he told me it wasn't necessary since I was on a continuing maintenance protocol. Well, I think that has now changed, right?. I may ask him to test me for my level of remission. If I can show that I am in MRD remission, why do I need to spend $14K a year on an exorbitantly expensive maintenance drug? Inquiring minds want to know.
I'll update this blog once I have some answers.