Cycle 11 Day 1

Today was my Dana Farber monthly visit. After a couple of failed attempts to put in the IV, the nurse finally got one that worked. I'm getting really used to having needles stuck in me. I also needed to get two more of them today: the subcutaneous Daratumumab and a Neupogen shot for my low neutrophils. 

I could have gotten a few more, such as the Flu shot, Covid booster, tetanus shot, etc., but I already felt like a pin cushion. I'll do those locally at my neighborhood pharmacy at my leisure.

I went to see Dr. Treister, the dental surgeon at Dana Farber about my exposed jaw bone issue. As it turns out, it was probably caused by trauma, such as biting down on something hard (I have no memory of this). 

Since it was detached, they were able to remove it easily. The bottom line is that it was not osteoporosis of the jaw (ONJ). He said it should heal normally, and I don't have to take any antibiotics or go back for a follow-up visit. Whew!

My lab results came back pretty good for the most part, but I'm still anemic, so they scheduled an iron infusion for today in addition to my normal monthly IVIG infusion to boost my immune system. This is the third time I've had an iron infusion. The first two times were several years ago. 

My care team wants me to schedule a colonoscopy to rule out any possible bleeding in my colon that might be contributing to this condition. I'll be seeing my PCP, Dr. Ray, on Tuesday, so I'll see what she has to say about it.

I did get one result today showing my progress on the clinical trial: the serum Free Kappa/Lambda Ratio. As you may recall, I have IgA Kappa MM, and I relapsed because my Kappa light chain spiraled upward out of control. Here are the comparative results from today: 

While still in the normal range, the ratio is close to going above the normal upper limit, but it's not because my Kappa light chain is rising. It's actually going down! This is due to my Lambda light chain actually falling below the normal range! I have no idea what to make of that. Hmmm.

It has now been over a year since I relapsed with MM. I started this trial on October 30, 2023. It's hard to believe that it has been that long. I feel good and I'm thanking my lucky stars for my Complete Response to this clinical trial. I look forward to seeing if Paul has updated trial results to report at the forthcoming ASH symposium in December. 

Assume that the remaining trial results for this cycle will be OK. If not, I will update the blog accordingly.

Cycle 10 Results

In my last post, I said I would only update my blog if my Cycle 10 results showed some anomalies. However, my latest results are still great: no detectable M-spike in my serum or urine. So I lied!

Why would I lie to you? Well, the answer is that I got a call today from the nurse, Cat, at Dana Farber with some good news. The centralized Clinical Trial Study Lab has determined that I have achieved a "Complete Response" to this treatment! That means I'm in full remission. That's excellent news!

As a refresher, a Complete Response (CR) in MM treatment is defined as the disappearance of the M-component on serum and/or urine electrophoresis with 5% or fewer plasma cells on bone marrow aspiration. 

I have been getting results from Dana Farber for several months now that I have no detectable M-Spike in either my serum or urine. Their internal criteria showed that I achieved CR at Cycle 8. However, the central Study Lab must have more sensitive equipment, as they determined that I reached CR at Cycle 10.

Now for the bad news. Dr. Richardson wants me to get another bone marrow biopsy in the next month or so. That sucks. What a pain in the butt so to speak.. Oh well, I'll just take IV drugs again to minimize the pain. I'll need to get a ride afterward, though. 

I went back to review the paper that Paul presented at the ASH conference last December. At that time, there were 18 patients enrolled in my Subcohort B3 of this Clinical Trial. Of those, only 2 had achieved a CR to the therapy. So I'm a pretty lucky guy!

Cycle 10 Day 1

Today I went in to Dana Farber for my monthly checkup. Before I get to that though, I have another story to tell.

For the last 12 years, I have been taking the bone-building bisphosphonate infusion, Zometa, to help heal my bones from the myeloma. It seems to have been working quite well, as I have had no bone issues beyond my osteoporosis. For the last few years, I've been taking it every 3 months as a preventative.

However, there is a possible downside to bisphosphonates.  One of the potential side effects of Zometa is a condition called osteonecrosis of the jaw (ONJ). ONJ is a condition where the jawbone is exposed and not covered by the gums. The bone then weakens and dies. Yikes!

Ever since I've been on this regimen, I have been going to the dentist twice a year for teeth cleaning and checkups. Everything has been okay until the last time I was there in November 2023 At the time, I had an abscess over my #12 tooth (upper left first bicuspid). They thought it might be a rotting of the tooth under the cap, but after seeing a specialist, it was determined that it was just a gum infection. Fortunately, after some antibiotics, that went away, and everything seemed fine.

Yesterday, they noticed that the jawbone over that tooth was exposed. They took an X-ray which seemed to indicate that I may have ONJ. They referred me to an oral surgeon. I called them and they said they don't take Medicare, so fuck them.

I did a little research on ONJ (what a surprise)!  It has 4 stages:

Stage 0: No exposed jawbone

Stage 1: Jawbone is exposed but no pain or other symptoms

Stage 2: Jawbone is exposed and you have pain, swollen gums, or signs of infection

Stage 3: All the signs of Stage 2 and have osteonecrosis in the sinuses or face.

I think I'm definitely Stage 2. I intend to follow up with this ASAP!

Back to today's Dana visit. I met with the nurse team, Shannon and Madison. I was supposed to take Zometa last month but deferred it because I was running late. Good move! I was supposed to get it today, but they put it on hold. They wisely suggested referring me to the Dana Farber dental specialist in ONJ, which I will do. I'll keep you informed about this latest glitch.

 Most of my blood tests came back either the same or better in most categories. However, I am still low in white blood cell count, neutrophils, and red blood cell counts, The team suggested that I get another iron infusion soon, but they want to check with my insurance first to make sure it's covered. I've already done this twice before, and it helps.

Today, I got another IViG infusion and a shot of Neupogen, along with my normal treatment. 

As for how I'm doing on the Clinical Trial, I only have one result from today. My Free Light Chain Ratio continues to be awesome:

As for the other numbers, I won't get results for another week or so. Therefore, I will assume that they will continue to show no M-Spike. If so, you can assume everything is still going well. I will only give an update if there is some change in the numbers, 

Cycle 9 Day 1

I went to Dana Farber yesterday for my regular appointment. Since I won't have any results until next week, I'll devote this post to our amazing Ireland adventure.

Everything about our trip was magical, but the high point of the experience was our visit to Clogheen, Co. Tipperary, our ancestral homeland. Jeff and I have been there before, but this was Brian's first trip to Ireland, so we wanted to make it a special experience for him. 

Some background discussion is in order here. I began my genealogical research in the late 1990s. I found that on my father’s side, his paternal grandparents were born in Ireland, and they both immigrated to America in the years after the Great Potato Famine of the 1840s.  

My great-grandfather, John O’Halloran, was born in the townland of Clogheen, County Tipperary, Ireland.  Following up on that information, I contacted a genealogist in Clogheen, Ed O’Riordan, who, along with his friend and now his partner, Karol DeFalcoi, kindly helped me with my research.

In 2000, I was able to satisfy a life-long dream as Gretchen and I took a vacation to visit the “Auld Sod” for the first time.  I was so excited!  High on my list was to visit my ancestral home in the townland of Clogheen. The slogan from the Clogheen website said: "A valley so soft and green it will take your breath away".  Here is an edited excerpt from a 2012 essay I wrote and published on the Clogheern website about this experience:

At Ed's suggestion, we drove up the winding road from Lismore in Waterford to the Vee Gap.  It was late afternoon, and I was hoping that the sun would stay out to give us a good view as we arrived.  The narrow road twisted and turned as it clawed its way up the Knockmealdown mountains.  Finally, we reached our destination, the Vee Gap.  At this pass through the peak of the mountain, the hills rose from either side of the road in the shape of a perfect V. 

I pulled over and we got out of the car.  As I walked to the crest, a spectacular tableau unfolded in front of me.  The sun was streaming through the scattered clouds, dappling the oh-so-green valley below with shafts of golden light.  It did take my breath away.  I don’t remember ever seeing anything so beautiful.  And there, nestled at the base of the mountain, was the village of Clogheen.  As I looked down at my ancestral homeland, I was overwhelmed.  I stood there for many minutes, transfixed, tears streaming down my face.  I don’t know how to explain my emotions, but I felt that I was meant to be there, that somehow I had come home.  The surreal beauty of that scene will stay in my memory forever.

When we arrived there last week, I had the same anxiety about whether the sun would come out for Brian’s first view from the Vee Gap. It had been cloudy all day, but Brian optimistically suggested that maybe a miracle would occur. Sure enough, it did! As we reached the Vee Gap, the blue sky had magically reappeared, and it was just as beautiful as before. It was magical. Talk about the Luck of the Irish! Here is the iconic picture from our trip:

I don't know what more to say, so I'll stop here.

Cycle 8 Day 1

My bout with cellulitis and the other weird bacterial infection seems to be under control. I finished a 10-day course of antibiotics on Monday and visited Dr. Sebeny that day for a followup. Unless it gets worse, I don't need to go back. The pain is gone, and the discoloration and scabbing are slowly disappearing. It's all good!

The one glitch in this experience is that the abdominal CT scan I got in the hospital showed a "spot" in my left kidney. I got a CD of the CT scan to take to my Dana Farber appointment on Tuesday. My PCP, Dr. Ray, also got a copy of the scan. Her office called me this week to give me a referral to a urologist. I guess I need to follow up on this. It seems that there is always something.

My Dana Farber appointment on Tuesday went well. I told them about the CT scan, and they checked my previous history. I had a PET scan last year, which didn't show anything, but my nurse, Ally, said that a PET scan is not the best way to check for kidney issues. All my blood test results continue to show completely normal kidney function, which is great!

Some of my CBC blood test numbers improved from last cycle. My platelets and neutrophils are both back in the normal range, so I didn't need to get a GCSF shot on this visit. My white blood cell count also improved some, although it is still low. I got another IVIG infusion to continue boosting my white blood cell count. 

So far, I have gotten two results that track my progress on the clinical trial. My free Kappa light chain value and Kappa/Lambda ratio are still both in the normal range. That's great! My 24-hour urine monoclonal protein study also came back negative with "No monoclonal protein detected". Also great! This time, it didn't note that I have hypogammaglobulinemia, which might be a reflection of my improved white blood cell count.

I'm still waiting for the serum protein electrophoresis result, which I should get early next week, but I expect that will be negative as well. Unless it shows a probllem, I won't bother to update my blog with that result. All in all, things seem to going very well!

My next appointment will be after we return from Ireland next month. I'm really excited about this trip! Slainte!

Medical Glitch

 WARNING! Do not scroll down if you don't want to see a graphic photo of my latest medical adventure.

After my post on Cycle 6 Results, where I showed a picture of the purpura on my arm, Brian suggested I warn people if I plan to show any potentially upsetting photos. So consider yourself warned!

WARNING #2!: This is a long boring post.

This all started last week. We were having a wonderful time at the farm celebrating the 4th of July and enjoying the products of my new Traeger electric smoker. The roast pig, smoked baby back ribs, and smoked skirt steak were all delicious! The weather was awesome and life was good.

On Saturday, Jeff and I took the ATV down to check out the trails. We took a shortcut through a swampy area and unfortunately got stuck. Even with 4-wheel drive, we kept sinking in the mud. With Jeff pulling on the tow rope from the back and me rocking the ATV, we still couldn't get it out until Jeff stuck branches under the rear wheels to get some traction. 

After about 20 minutes, we finally got out, but we were both covered with swamp mud. Jeff even had a leech on his leg! Yuck! When we got back, we had to hose off the ATV and ourselves. Correction: Jeff had to hose off the ATV and ourselves. 

Now I have had some swelling in my lower legs for the last few months. My left leg had also been leaking a little bit over the previous few days. That turned out to be a problem.

On Monday after coming home, I was watching a movie, when my lower left leg started itching badly. It turned red and was hot to the touch. I was in a lot of pain when I tried to walk. Donna, my landlady came up to give me some flowers (she always does that), but she saw me in pain and offered to take me to the ER. Being a stubborn O'Halloran, I declined and went to bed soon after. 

I was in too much pain to sleep until about 3:30 am when the pain went away. In the morning, I took a picture of my leg:

It wasn't pretty!

I called my PCP and Dana Farber. Their biggest concern was that I had a deep vein thrombosis (blood clot) that could detach and go to my lungs causing a pulmonary embolism. My symptoms were consistent with this, so they sent me to the ER.

I was freezing in the waiting room to be triaged, so they got me a blanket. Once I was in the ER, they put me on IV antibiotics and scheduled an ultrasound. The results showed that I didn't have a blood clot, which is a good thing, but that I did have cellulitis, which has similar symptoms.

They admitted me to the hospital and began an intensive regimen of antibiotics. I must have had 15 to 20 doses during the time I was there. They took multiple blood samples and a urine sample to track progress. Dr. Sebeny was my disease specialist. He was great! I told him all about my recent adventures and my MM journey. He related well, as he has a family member with MM and he knows Dr. Richardaon

At first, he thought everything was okay, but then he found that I had a bacterial infection in my blood. There are 2 types of bacteria: gram-positive and gram-negative. Cellulitis is gram-positive, but the type in my blood was gram-negative! This was a mystery, so I was stuck there until this got figured out. 

They did an abdominal CT scan so see if there was an internal source of the gram-negative bacteria, but that was negative, so did it come from the outside?

Finally, on Friday, he had the answer. The mystery bacteria was "Acinetobacter". He was very familiar with this from his military experience in war zones, having written several papers about it. Similar to cellulitis, this bacteria lives in the soil and can enter the body through any opening. The story finally hung together: I got both infections at the same time from the swamp!

Fortunately, this bacteria is easily treated with the same antibiotic as cellulitis, so he sent me home on Friday with a prescription for Levofloxacin to treat them both. I'll follow up with him a week from Monday.

Dana Farber is changing my next appointment from next Friday to the following Tuesday until after my antibiotic treatment has stopped. This should work out well, and the next cycle will then come just after our return from Ireland. 

When I got home yesterday, I reveled in showering, shaving, and changing clothes. I then went to bed early and got a good night's sleep in my own bed. My leg looks and feels better today, and I feel great, so it's all good! What an adventure!

I know this is too much information, so you should have listened to one of the two warnings above!

Cycle 7 Day 1

I had my monthly Dana Farber visit last Friday. My blood test results showed that I still have low white blood cell, neutrophil, and red blood cell counts. Here are the trends:

White Blood Cell Count

Neutrophil Count

Red Blood Cell Count

This probably explains why I have had trouble getting rid of my cold symptoms, including impaired sense of taste and smell. I find this very annoying. I hate not being able to wake up and smell the coffee! Literally. I hope this situation improves soon.

Along with my clinical trial medication, I also received my monthly immunoglobulin infusion to help increase my white blood cell count and a shot of Neupogen to help stimulate neutrophil production.

I now have all the test results from Cycle 6. My free light chain Kappa/Lambda ratio is still in the normal range, which is encouraging, although it is creeping up towards the upper limit of the range.

Kappa/Lambda Ratio

The 24-hour urine test showed "no monoclonal protein" and the Serum Protein Electrophoresis test also showed "No M-Spike detected". That's the best news yet!! That same test also identified that I have hypogammaglobulinemia, which I already know. That's why I need the immunoglobulin infusion every month. 

I had a wonderful time on my Rocky Mountaineer excursion and my visit with Brian and his family! Now I'm looking forward to our trip to Ireland in August.  

Cycle 6 Results

I want to start this post with an apology and a correction. In my penultimate post on April 24, I worried that the apparent M-spike in the Cycle 5 serum electrophoresis results on April 19 of 0.13 had slightly increased over the last several cycles, even though they ascribed the faint spike as probably due to the Dara treatment. However, what I didn't realize when they sent me home because of my cold that day is that they retested it again on April 26, which I hadn't seen.

I started Cycle 7 of the trial at Dana Farber last Thursday. The nursing team told me that my latest results showed no measurable M-spike, which confused me. When I got home, I rechecked the most recent Cycle 5 test results, and sure enough, the electrophoresis result from April 26 showed a "faint M-spike that can't be quantitated. That's great news! My earlier concerns about the slight increase in the faint M-spike have been allayed.

I just got all the Cycle 6 test results back from my May 23 visit. The results are the same as last cycle: the free light chain ratio is still normal, no sign of an M-spike in the urine, and only a faint M-spike in the serum electrophoresis that can't be quantitated.  I have been doing extremely well on this clinical trial, and I seem to have achieved a complete remission! Yay!! Thank you, Paul!

Despite my great reaction to the clinical trial, I do suffer from some treatment-related deficiencies, such as low white blood cell count, low red blood cell counts, and low platelets. This could explain why I am constantly fighting a cold.

Here is a graph of how my platelet count has been trending lately:

Low platelets can lead to excessive bleeding and a condition called "purpura", which appears as purple bloches on the skin. Lately, I have these blotches on both forearms:

I got my monthly IViG infusion on my last visit, which should help my platelet count. I don't think this is a serious problem, but hopefully these blotches will disappear sometime soon.

From now on, my schedule changes. I will only go in for treatment once every 28-day cycle instead of twice. My Mezigdomide schedule also changes from one week on, one week off to three weeks on, one week off. I will only get the Daratumumab injection once rather than twice per cycle, and I will still keep taking the dexamethasone every week. The plan is to stay on this new schedule indefinitely, as long as I keep responding to the treatment.

On Monday, I leave for my eagerly-anticipated Canadian Rockies train trip and visit to Brian and family, where I'll spend Father's Day and his 51st birthday. I return home on June 18. If I can get rid of this lingering cold, it should be even more fun.

Cycle 6 Day 1

Today, I went back to Dana Farber with my fingers crossed that my neutrophils had recovered enough to resume my treatment protocol. My cold has improved a lot, so I was hopeful. Last week I received a granulocyte colony-stimulating factor (GCSF) injection to boost my neutrophils, so when I saw my neutrophil count from today's blood draw, my heart sank. Here is the graph:

Neutrophils (Manual)

As you can see, the injection didn't help much. The count went up from 31 to 37, still well below 48, the lower limit of the normal range. I expected them to send me home again, but the Care Team decided to start me on Cycle 6 today anyway! Yay!

In addition to receiving my normal dexamethasone, Mezigdomide, and Daratumumab doses, I also got another IV infusion of gamma globulin (IVIg) and another GCSF injection. I'll continue to get the IVIg infusions monthly. 

This is the last bi-weekly cycle of this clinical trial. After this cycle, I will get my Daratumumab injection at Dana Farber monthly rather than bi-weekly. I will still take the Mezigdomide and dexamethasone pills at home on the same schedule as now. 

My next appointments are scheduled for May 10 and May 23, followed by June 21. It would be great if this schedule holds up. I am planning my Canadian Rockies train trip and a visit to Brian in California from June 3 to June 18, which fits into this treatment schedule nicely.

It's all good!

Cycle 5 Results

My cold has improved, and I now have an appointment at Dana Farber for this Friday. Hopefully, my neutrophils will have recovered enough for me to be able to resume my treatment this week.

The Cycle 5 results have come back. My light-chain ratio is still in the normal range, which is great! In fact, over the last three cycles, it has been moving steadily towards the middle of the normal range, which I find comforting.

The monoclonal protein study of my 24-hour urine sample came back as "No monoclonal protein detected", which is also great news! This result has been consistently negative ever since I began the Clinical Trial. I'm glad I remembered to take in the 24-hour urine sample this cycle. 

The serum protein electrophoresis result, on the other hand, shows a gamma M-spike of 0.13. That is up slightly from the 0.12 from the last cycle and 0.10 from the one before that. 

While it is a bit disconcerting to see this number go up, the medical interpretation is the same as it has been for the last three cycles: "Patient's faint IgG Kappa is most likely associated with Daratumumab therapy".

All in all, I am quite pleased with these results. Clearly, I am responding to this treatment regimen. I am so glad I managed to squeak in on this Clinical Trial. 

Another Delay

Yesterday afternoon, I went to Dana Farber for what was supposed to be the start of Cycle 6 of the clinical trial, but it was not to be. Unfortunately, after recovering from my pneumonia and a cold, I came down with another cold earlier this week. 

After my blood draw, I met with the nursing team, and they were concerned both about my lingering cold and my low neutrophil count. Neutrophils help the body fight infections, and mine have been consistently low recently. 

I had a shot of granulocyte colony-stimulating growth factor (G-CSF) a few weeks ago, but it didn't seem to solve the problem.  Here is a graph of my neutrophil count:

The bottom line is that I was given another shot of G-CSF and was sent home until next week. Hopefully, I will get an appointment to go in again next Friday and be able to resume my treatment then.

Since my blood draw was on Friday afternoon, I am still waiting to get results about my progress for this cycle. I should get most of the results sometime next week. I'll update this blog when I have more information to share.

Cycle 4 Results

I apologize for the delay in updating this post, but some medical matters intervened. Let me explain.

Last Saturday, I flew out to San Francisco to spend time with Brian and family. We had long planned to do some hiking in the hills around his home in Novato. Last year at this time, I was visiting them, and Brian and I hiked Muir Woods. There were a few hills, and I became noticeably winded, as I was badly out of shape.

This year, I vowed to correct that, so I went back to the gym a couple of months ago and started spending 30 minutes on the treadmill 2 or 3 times a week, sometimes with an incline. It paid off. We went back to Muir Woods on Monday and walked further than we did last year, and I did much better. Brian was impressed. Then the next day, we walked about a mile up a hill to a beautiful waterfall near his house, again without a problem. But not for long.

I think 3 things contributed to the problem. First, my MM treatment has weakened my immune system. In fact, I have an appointment at Dana Farber this Friday to receive an IV infusion of gamma globulin to strengthen my immune system against bacterial and viral infections. Secondly, I think I overdid it by walking nearly 6 miles in 2 days, far more than I am used to. Finally, I stupidly didn't bring any water along on either day, and I think I got seriously dehydrated. Duh!

By that evening, I wasn't feeling well. I started drinking water, but it was too late. I then spent all day Wednesday resting and shivering and napping on their couch.

I flew home on Thursday. I was going to update my blog on the flight, but I didn't feel well and lost the Internet connection less than halfway home. So I just rested and napped the rest of the way.

I had left my car at Holly and Ryan's in East Boston while away. I Ubered there, but I was out of breath after climbing the stairs to their condo. Ryan offered for me to stay the night, so I crashed on their couch. They have been so nice to me. I don't know what I would do without them!

Friday morning I drove home and called my PCP. She suggested that I go to the ER, so I went to the Anna Jaques ER nearby, where I got a battery of tests, including an EKG, multiple blood draws, a Covid test, chest X-ray, an IV drip of saline solution, and a chest CT scan to rule out a pulmonary embolism (fortunately negative).

The diagnosis finally came in. I am COVID-negative but have bronchitis and pneumonia in both lungs. They started me on 2 antibiotics and a cough blocker. I picked up the rest of the scrips this morning. I'm feeling okay right now, but I'm still pretty weak and tired.

I'm sure you were enthralled by the above narrative, but it has little to do with the purported purpose of this blog, which is Multiple Myeloma. I will fix that. It might be helpful to start with a review of my M-spike history over the past year. I have prepared a graph of the results, but I can't load it, so I'll just describe it.

In March of last year, my M-spike was zero and I was still in remission. By April, a slight M-spike was unmeasurable, but I knew then that the handwriting was on the wall (I will eschew doing a phraseology analysis of that idiom). 

By September, it had risen to 0.29, still well below the level of 0.5 for it to qualify on its own for a relapse. However, my Kappa light chain was starting to go haywire. By October, my Kappa exceeded the threshold and I was officially in relapse.

I then joined the clinical trial and began treatment on November 29. By December 4, my M-spike had dropped to barely measurable. That was amazing! I then got Covid, which delayed my treatment for about 3 weeks. My January numbers showed the M-spike rising to 0.1. Could that have been due to the delay in my treatment? By February, it stayed at 0.1. Meh.

Then the latest result on March 15 shows it rising a bit to 0.12. I was a bit disappointed at first, but then I realized that I had been downplaying a silver lining in the SPEP narrative that has accompanied the data numbers since my treatment began, to wit:

"The M-spike is admixed within a background of polyclonal immunoglobulins. The M-spike concentration reported includes both the M-spike and the polyclonal immunoglobulin background and is thus an overestimate. Patient's faint IgG Kappa is most likely associated with Daratumumab therapy."

The bottom line is that the current M-spike numbers are probably due to my treatment chemotherapy, not Multiple Myeloma!

From now on, unless or until my M-spike (or other indicator) spirals out of control, I am putting my concerns about my high-risk t(4,14) and amp(1q) anomalies on the back burner, and I'm going to keep on my Happy Face. See? 😁 It's all good!

Cycle 5 Day 1

I 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'll have to wait until the next cycle to get that result. 

The second booboo is that I left my computer behind when I left Dana Farber. Duh! Fortunately, I arranged to pick it up on Saturday morning on my way to the airport for my flight to San Francisco. I was going to update this blog on my flight here, but the wi-fi on the United flight wasn't working, so here it is, Sunday morning, and I am just now getting to it. Happy St. Patrick's Day!

The appointment went well. Most of my blood test numbers looked good. I only have one Myeloma result to share so far, which is the free light chain test. Fortunately, my Kappa light chain is still well within the normal range, which is good news! The next important result that I'm waiting for is the blood serum electrophoresis, which won't be available until later this week. I'll share that result when it comes in.

In the meantime, I'm going to enjoy St. Patrick's Day with my family!

Revisiting the Amp(1q) Issue

You 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 Daratumumab (Dara), I researched whether Dara worked with amp(1q). I found a paper that showed adverse outcomes for amp(1q) patients on Dara. In fact, they described the outcomes as "dismal". Here is a link to the paper:

 Adverse outcomes for amp(1q) patients on Dara.

Here is the graph from that paper that scared the living bejesus out of me:

As you can see, of the 8 patients with amp(1q), 4 had relapsed within 3 months of treatment, 7 dropped out due to progressive disease, and 4 of them died during the study. Hmm. That sucks.  As you can imagine, I was a bit shaken by that information.

But since then, I have found reasons to be hopeful. First of all, the response I got from Dr. Richardson was pretty encouraging. While acknowledging that I am high risk, he feels that I'm on the right clinical trial for this. While it didn't erase all my concerns, he was upbeat and I respect his opinion.

The next thing I did was do a deep dive into the paper that Dr. Richardson presented on the MeziDd trial at the recent ASH conference. There are a total of 59 patients in this trial. What I found interesting is that 46% of these patients are in the high-risk category.

When I was researching the amp(1q) issue, I found that it is a commonly acquired high-risk genetic abnormality that affects about 16% of all relapsed myeloma patients. Statistically speaking, that means that about 4-5 patients in this trial should be afflicted with amp(1q). 

However, the results that Dr. Richardson presented showed that only 1 of the 59 patients in the trial had progressive disease! That's great news! Maybe amp(1q) doesn't always lead to such dismal outcomes after all. 

I've decided to chill out about this, keep my normal smiling face, stay optimistic, and hope for the best.

 

Cycle 3 Results

I 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 well below the initial value of 0.29 g/dl before I started the clinical trial. This will be an important parameter to track as I continue this protocol. Overall, I'm responding quite well to this clinical trial.

As for my high Vitamin B12 issue, I now realize that I overreacted to that. You know how it goes when you tell someone "It hurts when I do this", and their response is, "Then don't do that anymore"? That sort of happened to me with the B12 thing. 

I said in my last post that I wasn't going to bother Dr. Richardson with this, but I did email the trial coordinator, Alice, about it. She asked if I was taking Vitamin B12 pills, and I acknowledged that I had been. She suggested that I stop taking them (duh!) and we can check the levels again in 3 months. 

The fact that she wasn't alarmed about my high B12 and didn't suggest doing anything about it shows that this whole issue is a big nothing burger! I need to chill out a little bit about some of these test results.  Oh, and I have some extra Vitamin B12 pills if anyone needs some.

I came across a video of Dr. Richardson discussing the results of this clinical trial after the ASH Symposium in December. It's somewhat technical, but if you are interested, here is the link:

Mezi Combo Therapy for Relapsed Myeloma

These results are pretty spectacular! Considering how well 90% of us patients are doing on the C3 arm of this trial, maybe there's another thing I should be more relaxed about, which is my amp(1q) cytogenetic glitch. Yes, it's a high risk, but I've always been high risk, and here I am 13 years later, still alive and kicking. So as long as I continue to respond well to this therapy, then it's all good!

Cycle 4 Day 1

I 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 place. I was relieved to see that it has not only continued to stay in the normal range but in fact has gone down. Here is the graph:

This result has given me some early hope that my remission might be back on track. I'm going to have to wait several more days before some of the other results come in. I'm most interested in the serum electrophoresis result, which won't be available until later next week. That's the one that went up last cycle. 

I'm hoping that that might have been due to the 3-week treatment delay caused by my Covid. When I spoke to the clinical trial team yesterday, they also thought that could be the reason. I'll just have to wait and see. 

One concern is that I have been becoming slightly anemic, even though I am taking iron pills daily. The trial team isn't too concerned, because this can be caused by the treatment itself. They did order some additional analysis of my blood draw, and one of the things that showed up is that my vitamin B12 level is very high! Here is a graph of previous results:

Now this isn't a parameter that is normally tracked.  The last time this was tested was in June 2022, and as you can see, it has been in the normal range for the last 12 years! So what is going on here? This could be something that has been going on for a while and may have nothing to do with my current treatment.

I did some online research to see what elevated B12 means for myeloma. The results I got were confusing. Elevated B12 is often associated with liver or kidney problems, diabetes (none of which I have), or certain forms of leukemia. Myeloma is usually associated with a low B12 count. Hmm.

Based on a bone marrow biopsy result back in 2016, Dr. Richardson thought I was at risk of developing Myelodysplastic Syndrome (MDS), which can develop into Acute Myeloid Leukemia (AML). However, nothing ever came of that at the time, although I am now taking folic acid and vitamin B1 as a preventative. 

Could it be that this has now raised its ugly head? Could it be that myeloma might be the least of my problems? Perish the thought! Obviously, I plan to discuss this during my meeting with the clinical trial team next month. I'm not going to bother Dr, Richardson with my frivolous concerns. I'm just bothering you with my frivolous concerns, which of course I expect to remain frivolous.

I'm glad I can share such an uplifting report. I'll have more news over the next week. Stay tuned.  

Silver Lining

I 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 response to therapy. His presentation with updated results showed that the ORR has been over 80% on this trial. There was also a teaser in one of his YouTube videos that one of the cohorts in the trial achieved an ORR of 89%. 

There are three cohorts in the MeziDaradex clinical trial, B1, B2, and B3. When Dr. Richardson offered me the opportunity to participate, he suggested I enroll in Cohort B3, which I did.

After the ASH convention last month, the maker of Mezigdomide, Bristol Myers Squibb, issued a press release on Dec. 11. Their press release spilled the beans! It revealed that results at ASH showed that Mezigdomide combined with  Daratumumab and dexamethasone in previously treated patients achieved a response regardless of dose and schedule, with ORR observed in 82.6% of patients in Cohort B1, 62.1% of patients in Cohort B2, and 88.9% of patients in Cohort B3.

Yahoo, that's me! Color me B3! In Dr. Richardson I trust!

Now I don't want to get ahead of myself here. The amp(1q) is still a big issue. After finding out about that, I got a bit down, but you all know me as an optimistic person. I like to look on the bright side of things. Finding this press conference today brightened my mood considerably. 

I'm not "out of the woods" yet, but I'm ready for the fight. Bring it on!

I don't want to be overly pedantic (or do I?), but the etymological origin of the idiom "'out of the woods" can be found. Abigail Adams used it in a November 1800 letter found in the Papers of Benjamin Franklin. Just sayin!  

Fly in the Ointment

So 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 source is Ecclesiastes 10:1: "Dead flies cause the ointment of the apothecary to send forth a stinking savour." Now I get it! I'm glad that's settled. But I digress.

I got my Cycle 2 blood serum and urine protein electrophoresis results today. The urine results still show no m-spike, which is great! However, the serum results got a little worse from the last cycle. The previous result showed a "faint M-spike that is not apparent on the electropherogram and, therefore, cannot be quantitated". The latest result, however, shows an M-spike of 0.1 g/dL. That's still lower than the 0.29 g/dL that I had back in October, but it's going in the wrong direction! 

It could be that the 20-day hiatus from Dana Farber that I was forced to take due to Covid might have slowed down or reversed the progress of the treatment. I don't know. I hope that's the case and that this is just a temporary glitch.

But that's not the only problem! I just recently noticed from my October 13 bone marrow biopsy results that in addition to my known t(4;14) and hypodiploidy cytogenetic abnormalities, I also now have chromosome 1q amplification, or amp(1q).  This abnormality must have been acquired at some point, as it wasn’t noted in my previous bone marrow biopsies. It's not unusual for genetic abnormalities of MM patients to evolve over time.

On researching this, I quickly discovered that amp(1q) is associated with severely adverse outcomes for MM. Oops! Now that's a bummer. Nothing that I have read about it yet is very encouraging. None of the MM drugs in clinical use today seem to have any beneficial effect on amp(1q).

However, these projections seem to fly in the face of the good results I have been getting so far in my clinical trial. I was a bit bewildered, so I decided to email Dr. Richardson to get his take on this.

As is his wont, Paul responded promptly. Here is his assessment: "I would suggest this genetic profile in your disease validates the treatment we have recommended as this does suggest higher risk disease, but I am very hopeful we are going in the right direction with your treatment, which is designed to deal with just such additional “risk”."

Hmmm. That's not exactly a ringing endorsement, but I guess that's the best I can hope for. Maybe my long string of extraordinary good luck with MM is about to be tested. I have to say that these recent revelations have been like a "bolt from the blue".

Now that's another phrase I've often used without exactly understanding its meaning. I thought it might refer to a bolt of lightning. However, as it turns out, an ordinary bow shoots an arrow, but a crossbow shoots a projectile called a bolt. Since a crossbow has a lot longer range than a bow, the bolt can seem to come out of nowhere. Okay, that settles that. But then again, I digress...

Cycle 3 Day 1

I 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. I expect those results over the next 3-4 days. I hope the time I lost because of Covid doesn't mess things up. Fingers crossed!

A weird thing happened when I was getting my subcutaneous Dara injection. The insertion line filled with blood, meaning Emily had hit a vein. She said that happens very rarely, but she had to do it over. I suggested that she find a different spot in my stomach! The next one worked much better.

Everyone is still anxiously waiting to get a copy of the paper Dr. Richardson gave at the recent ASH conference on this clinical trial. I will share it with you if and when I can get access to it. Alice Tattersall told me that his presentation was very well received by the Myeloma community. 

I also found out from the nurses that at a recent meeting between Dr. Richardson's team and the trial sponsor, Bristol-Myers Squibb (developer of Mezigdomide), I was a topic of conversation because of the outstanding response I had to my first cycle of the clinical trial! Wow! Needless to say, that made me feel pretty good. 

I know I may sound like a broken record, but I have been so fortunate over the years with my MM between Dana Farber, Dr. Richardson, and the amazing clinical trials I have been lucky enough to get enrolled in. I'm just so grateful! 

From now on, I only go into Dana Farber every other week for the next four 28-day cycles. After that, it will be once a month. Yay! My next appointment is scheduled for February 5 to get me back on a Monday schedule cycle. I was supposed to get a Zometa infusion today, but I rescheduled that for February 5. It's not related to the clinical trial, so it's no big deal.

I'll update this blog after I get the results from today's blood and urine samples. In the meantime, stay warm!