Another Tardy Update

I've had a few medical issues over the last couple of months.  I had an MRI of my cervical spine, two head-to-toe PET scans, a cardiac stress test, a dermatology visit, and an eye test. Life seems to be turning into a succession of medical appointments. 

In the meantime, I continued my monthly visits to Dana Farber on my clinical trial. The good news is that I am still in remission from the MM. My last visit was on May 9, and my free light chain ratio remains normal, with no detectable M-spike. That's all good, but some of the other results aren't as rosy. 

My cardiac stress test showed some plaque in my left ventricle, so my doctor wants me to schedule a fasting cholesterol test. I don't think that will be a problem, because I get my cholesterol tested every month at Dana Farber without fasting, and it's usually in the 170-180 range, which is normal. 

I had 5 biopsies for my dermatology visit, and all 5 were positive: 4 squamous cells and 1 basal cell carcinoma. They are on my scalp (2), chest, left arm, and right arm. When I pointed them out to my landlord, Garry, I made the sign of the cross to show him where they were, so he now calls me "Father Bill" 😊. I have scheduled 2 appointments to have them removed. 

My eye test showed some issues with my field vision, which could be indicative of glaucoma. I have scheduled a repeat test for next month.

The biggest issues are with the PET scans. The PET scan in March showed 2 problems: nodules in my left and right lungs, and some tracer uptake in my cervical spine, especially vertebra C4. My latest PET scan on May 9 showed mixed results. Fortunately, the nodules on my lungs have either completely or partially resolved, so thankfully, they don't seem to be an issue. I had scheduled a follow-up CT scan in June, which has now been canceled. Yay!

However, the nodules in my cervical spine have increased. The tracer drug I had injected was FDG, a type of glucose that shows cancer activity. These show increases in my C4 vertebra and a nearby lymph node, likely related to Multiple Myeloma.

I messaged Dr. Richardson for his take on these results. His nurse got back to me, suggesting that I schedule an appointment with a radiation specialist. It looks like I might be in for some radiation treatments for this condition. Rats! Fortunately, I don't have any pain or restricted movement in my neck, so that's a positive.

I'm confused. My clinical trial is going so great! I have no M-spike, and my free light chains are still in the normal range. How can this be? After a little research, I discovered that I might have extramedullary disease (EMD), where only light chains are secreted, even without a detectable M-spike in the blood serum. Shit! So these light chains may only be detectable in the urine (which I haven't provided for the last couple of months). I will provide a 24-hour urine sample at my next visit.  I need to have a conversation with Paul about this. 

I don't think I'm about to expire from high cholesterol, skin cancer, glaucoma, or MM any time soon, so I expect to be around to give an update on all these findings. 😀

Long Overdue Update

It has been several months since I updated this blog. For that, I apologise. A few things have happened in the meantime, which I will try to summarize. 

In January, I came down with a respiratory infection that had me bedridden for a couple of days. It continued to linger, and one day, the left lymph node in my neck swelled up. I ignored it until it subsided a few days later, but then my right lymph node swelled up. 

Then I decided to go to the doctor. He suggested I get an ultrasound, but as it was a Friday, I waited until Monday, but by then the swelling had gone down and I didn't schedule the ultrasound. However, later that week, my left node swelled up again, so I decided to get the ultrasound after all. 

The ultrasound on Feb. 3 showed some activity in my neck that was inconclusive, so they scheduled a CT scan for February 11. The results of that were a little scary. The nodules in my neck were possible metastases of a cancer from elsewhere. Also, there was a small (4mm) nodule in my right lung which wasn't there in a 2023 CT scan. Gulp! Naturally, I became focused on the possibility of lung cancer. I decided to suspend my MM chemo for the rest of that cycle.  In the meantime, I got a bone marrow biopsy on February. 5.

I had my Dana Farber appointment on February. 14, where I shared my CT result. They approved restarting my MM therapy that day. Afterward, Dr. Richardson scheduled an appointment with Dr. Steimer, a thoracic cancer surgeon there. He also scheduled me for a cervical spine MRI on Feb. 25 and a full-body PET scan on Feb. 27. 

The MRI result was encouraging. The lesions on my cervical spine are most likely related to the myeloma, not metastases, thank goodness! Also, another soft tissue neck lesion is probably vascular, whatever that means, but it's not bad. 

The PET scan was even better. My lymph nodes are fine, and the new small lung lesion is probably just an infection. There is possible infection or skin cancer on my left scalp, which I am aware of, and there is no sign of any other cancer elsewhere in my body! I have an appointment with my dermatologist in April, so I will take care of the scalp issue.

I met with Dr. Steimer on February. 28. She affirmed that these results look good, but she wants me to come back for another CT scan in about 3 months, just to make sure that the new lung module isn't growing.

Interestingly, this whole battery of tests started with my lymph node problems, but in the end, they had nothing to do with it! 

In the meantime, my bone marrow biopsy results have all come back. I am still in full remission, and even better, the test for Minimum Residual Disease (MRD) was encouraging. While it found possible myeloma cells, they were below the Level of Detection (LOD) of the test, which is one part in a million! The blood tests are only good to one part in a thousand.

It seemed like an oxymoron that they might have detected myeloma cells, but were below the LOD of the test. What? I called the Dana Farber medical team for an explanation, and they felt that this test actually shows that I am MRD negative and that the evaluators were just covering their asses, which is great news! Such a result is very positive for predicting long-lasting remission from MM. 

After all of this, it appears that I am in pretty good health for my age (knock on wood). Trust me, reading these lab reports is pretty discouraging when you find out all the parts of your body that are deteriorating. But fortunately, I feel good, I'm not in any pain, and I'm still mobile, which is the most important thing. I have to say that I continue to be blessed. I have been very lucky, and I am grateful for every day!

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.