A Great Test Result

As you know, I have my blood tested every 90 days to monitor the progress of my lil lymphoma. The result that is most revealing is IgM. Patients with elevated IgM are at significant risk for opportunistic and repeated infections. In addition, the defect in the immune system results in a decreased ability to identify and fight cancer cells.

Ninety days ago, the result was 1608; the test before was 1408. The normal range is 45-281.

I was prescribed a rather new and promising medication, Brukinsa, after the 1608 result, loss of energy and weight loss starting in early December.

I was tested yesterday. The current IgM result is 312! That is, almost within normal range!!!

Needless to say, I am very happy. Not only do I feel much better, but taking a few pills with almost no side effects at all is so much easier on both me and My Adorable Wife than intravenous chemotherapy.  In fact, we both remarked about that yesterday driving home from the lab.

I will see the Dr. Hema5 on March 2 where we will discuss this excellent result. He and his staff have given me the finest care for which I am very grateful.

I have high hopes that intravenous chemotherapy is now behind me and that my lymphoma will be entirely controlled by twice-daily medication.

 I had my usual round of blood tests last Friday. The salient result is IgM which was reported at 1608. That is approximately 14% higher than than three months earlier. The normal range is 45-281.

My doctors have often suggested watchful waiting as my symptoms deteriorate. The reasons are two; first, the fewer rounds of treatment that a patient undertakes in a lifetime means greater comfort, away from the intravenous needles and chemicals.

The second reason is that new drugs are being developed every year. Don’t start the second-best therapy today when a much better therapy may be available tomorrow.

In my case, there is a better therapy available and Dr. Hema5 has prescribed an oral medication, taken twice a day. That certainly is preferable to day after day of intravenous treatments that invariably, at least in my case, have very unpleasant side effects.

I start the new medication this Friday. I will continue to have quarterly blood tests and expect to see my IgM number decline.

Blood Test Thursday

Waldenstroms, also known as my little lymphoma, is characterized as ‘smoldering;’ that is, the disease progresses slowly, and, in some cases, it plateaus or doesn’t progress at all.

Because of this smoldering nature, Dr. Hema5 prescribes blood tests quarterly and in-person visits semi-annually. I reported for regularly scheduled blood tests a few days ago. I have reviewed the protein immunoglobulin M (IgM) reading and it has risen to 1199.

IgM is the primary indicator of battling cancer cells in the body affected by Waldenstroms.

For reference, here is a brief history; the reference range is 45.0 mg/dL - 281.0 mg/dL:

4/15/2020 After session 4 of chemo: 265 i.e. within normal limits

7/30/2020 384 up 11910/19/2020 426 up 42

1/19/2021 Prior to office visit 453 up 27

5/3/2021 489 up 36 

7/21/2021 635 up 146

1/17/2022 873 up 238

5/18/2022 1199 up 326

Some tests were postponed or omitted during Covid-19.

As the untrained eye can see, it is increasing at an increasing rate. The smoldering embers are starting to look like fire.

While I am a bit cautious, I am certainly not yet alarmed. When I last needed chemo, it had risen to about 2300 and I felt terrible.

Today, at 1199, I feel fine. My appetite and energy are fine and I have no complaints at all.

I next see Dr. Hema5 in August and I’ll be very interested to see the result.

Routine Follow Up

Things have been very quiet here on the blog recently; that’s because my lymphoma has also been very quiet, thankfully!

I had a regularly scheduled visit with Dr. Hema5 who, after analyzing my recent blood test results and prodding and poking me a bit, said that he is having a hard time finding anything wrong! 

Although my IgM number is up a bit, as expected, it is not alarmingly so and therefore neither the doctor nor I are concerned.

We discussed treatment options for the time, many years from now, we hope, that the numbers peak and my energy and overall health decline. He said that there are new options coming along regularly; options with fewer side effects and lower cost. 

Finally, he gave me the best news I’ve heard in a long time: “See you in six months.”

Awesome news! Now I can plan a long vacation for My Wonderful Wife and me!

Chemo is finished!

In my last post, I reported that my doctor was pleased with my progress and wanted another blood test in order to judge the next steps. I had the test on April 15, My Beloved Wife's birthday, also tax day and, all around, a day for giving till it hurts!

My Immunoglobulin M number was reported at 265; that is, within normal limits. A few days later, my doctor said, electronically, "My recommendation and advice is that we are done with treatment." I will return to quarterly followups with the doctor.

That is wonderful news! My health and energy level certainly agree with this conclusion. I feel very well, indeed.

After the first occurance of this illness, chemotherapy gave me about ten years of symptom-free living and so I have high hopes that this will be the outcome of my most recent rounds of chemo. I hope to enjoy my life to the fullest.

Now if the virus would go away, we'd be all set!

Chemo postponed

When the COVID-19 crisis erupted, my appointments for chemo were postponed. I assume that skilled medical providers are required for virus cases; certainly more dire than mine. I also assume that I was postponed because I have been making very good progress and that I would most likely be well whether my chemo infusions were carried out one month or three months or even six months from now. I also assume that there are other patients who are not so lucky and that chemo was carried on because to not continue promptly might mean a dangerous regression in their illness.

Today, Dr. Hema5, working from home and distancing himself from danger, telephoned me to discuss my progress. He agreed that my progress has been very good and that my numbers have improved remarkably. After discussion, we agreed to postpone chemo until after I have visited with him in person in June or July. We also agreed that I would have a blood test next week.

If the numbers from next weeks blood test continue to show the improvement that I listed in my just previous post, I think there is at least a small possibility that further treatments will not be required! Fingers crossed!

I feel very fine indeed. I am back to my regular exercise routine. I have picked up my camera and am photographing whatever I can safely find in COVIDfinement. I am thinking once again about vacation season out west.

Please stay safe, dear friends. I look forward to an early opportunity to see you happy and well.

Beware the Infusions of March.

With apologies to Willy Shake.

On the first two weekdays of March, I appeared at the infusion room for my periodic poisioning, politely referred to by the professionals as chemotherapy. This was the fourth session of six.

On both days, my appointments were at roughly 10:00 am. On both days, the entire process, from check-in to check-out, was just about two hours!

On both days, so far, fingers crossed, I have had no side-effects at all! I am very glad to report this and very sorry to not have a more interesting report for you all.

I report to Dr. Hema5 a few days before every infusion session. At each visit, my blood is tested to judge my general health and suitability for continuing infusions and, as well, to judge my overall progress. I have access to my results and the news is quite good. Immunoglobulin M is the first antibody to appear in the response to initial exposure to an infection. In my case, the relevent infection is cancer.

I have been very encouraged by the trend. The reference range, that is, the range that our doctors consider acceptable and not remarkable is 45.0 mg/dL to 281.0 mg/dL. I've noted my recent history and the progression is:

10/22/2019 Before treatment 2285
11/8 Before treatment            2093
12/23 After session 1               926
1/13/2020 After session 2        757
1/30 After session 2                 485
2/27 After session 3                 364

Wow! I am getting very close to normal, that is, as normal as a Waldenstrom's patient can reasonably expect to get!

Woo hoo!

I will report more as I have news.

Three down and three to go.

Yesterday and today, February 4, I was infused with Bendamustine. This was session three of six. I am now 50% complete. Woo hoo!

While I have previously had mostly nuisance side-effects, so far, I feel fine and have high hopes that the side-effects will be absent or, at least, minor.

The entire process only takes about 90 minutes, a very welcome change from the nearly all day process from ten years ago. The very sensitive and caring Nurse K skillfully and almost painlessly inserted the needle through which the infusion is administered. She's a pro!

We celebrated with a late lunch at The Good Mexican Place. I even enjoyed a few sips of beer, remembering that alcohol has not been a very good compliment to chemo in sessions past.

My thanks to Cousin M with whom I whiled away the time in a long, pleasant FaceTime visit. Thanks, Cuz!

A visit to the Doc

Following each round of my treatment, I am scheduled to visit with Dr. Hema5 to assess my progress and address any issues. I saw him today.

He reviewed my last treatments and asked for my report of the failed administration of rituxan and any side-effects I've suffered. While I have been experiencing moderate side-effects, none are as severe as those suffered after round one; those that drove me to the emergency room and to the hospital.

Dr. Hema5 outlined three options. The option he recommended and the one I prefer, is to continue with bendamustine alone. I inquired as the the effectiveness of bendamustine alone compared to the usual combination of bendamustine and rituxan. He reported that there has never been a head-to-head comparison made and so the result is unknown.

After some discussion, we agreed to continue with bendamustine alone. I report for round three early next month. I feel very happy that we have a solid plan to move forward. Off I step into the unknown!

Save Bill!

Yesterday's disaster was infusion of rituxan, a drug for which I have twice had very bad reactions. Today's quick and easy infusion was a different drug, bendamustine. It went perfectly smoothly and was done in about an hour! As always, my vital signs were taken after the infusion. My pulse was a bit elevated and my blood pressure a bit low, but I felt fine. I was released!

I felt so good that we celebrated with a fine Italian meal at a nearby local restaurant.

I intend to ask Dr. Hema5 to be taken off of rituxan at my visit next week.

Kill Bill

I undertook my next series of chemotherapy yesterday. It was a disaster.

When, after getting infused with saline and taking oral medications, they began the rituxan, I began to have blurry vision and felt very faint, as if I were about to pass out. We rang the call button and Nurse K appeared. She took my blood pressure and found it an alarming 80/42! She stopped the rituxan and two more nurses appeared. I assume, in a condition like this, three heads are better than one.

Doctor Hema5 was telephoned who evidently suggested that I be given an opportunity to recover and, that, after a period of time, the rituxan be restarted.

My Adorable Wife had packed a lunch for us, a bit healthier than the usual snacks offered at the infusion room that are high in salt and low in actual useful nutrition. When she offered lunch, I could barely choke down two bites.

In the early afternoon, the rituxan was restarted and the symptoms re-emerged rather soon. New symptoms appeared, as well; chill, shivering and nausea. They supplied me with these cute little bags of which I took full advantage.

In view of all this, it was decided to cease the rituxan. I am disappointed because my treatment is not moving forward smoothly. I report again today and I will, of course, be fascinated to see the result.

When we finally arrived home at about 6:15 pm, I laid on my bed fully clothed to nap a bit. I awoke at about 7:30 am! After a 13 hour nap I feel much better.

Let's take a ride in an ambulance.

It has been a disappointing couple of days here in lymphomaland.

I awoke with a fever, high blood pressure, high pulse and atrial fibrillation, also known as a-fib. I have a 30+ year history with a-fib because of my history with cardiac arrythmia. During atrial fibrillation, the heart's two upper chambers (the atria) beat chaotically and irregularly — out of coordination with the two lower chambers (the ventricles) of the heart. Atrial fibrillation symptoms often include heart palpitations, shortness of breath and weakness. Atrial fibrillation is an often rapid heart rate that can increase the risk of strokes, heart failure and other heart-related complications.

Ummmm, no thanks.

After going through a short period of shock and denial, My Adorable Wife drove me to the Emergency Room. After I described my issue, I was whisked to a treatment room where four (!) professionals showed up to attend to me. I was given an infusion for saline solution and also a shot with a calcium channel blocker. In less than an hour, my heart returned to regular sinus rhythm. Whew!

However, (don't you hate it when there is a however) my blood sample revealed an increased level of lactic acid. After many doctor and nurse huddles and many calls to the on-call physicians, I was decided that I should be admitted to the hospital. Hence, the ambulance.

At the hospital, I was put through the exact same procedure as at the ER. "Tell me your symptoms." Saline infusion, electrocardiogram, blood tests, vital signs, and more. I also had a realtime heart monitor attached that communicates wirelessly with the nurses station.

I barely got any sleep because there was a near constant parade of nurses wanting to give me something or take something, usually blood.

By morning, the doctors had concluded that the after-effects of chemotherapy along with dehydration had triggered the a-fib. Since they had pumped me with seemingly gallons of saline fluids, along with a dose of calcium channel blocker, no irregularities in my heart rhythm were seen. With respect to the lactate level in my blood, I was asked to follow up with my primary physician. I was then released.

I feel weak and as if I have aged about 20 years.

I will see my primary phsician and Dr. Hema5 in the upcoming week and, of course, drink much more water!

Fever! I got a fever.

Last evening, after we had returned from the infusion room, I felt a little flush and decided to lay on my bed and read. As I went to the bedroom, I felt chills although I was dressed warmly and the house is heated. As the thermometer was on the bedside table, I decided to take my temperature. It was a surprising 100.7. I checked again in thirty minutes and it was 100.9. By 10:00 pm, it was 101.

After Infusion 2 of Round 1, I had been asked to report to the Emergency Room if my temperature exceeded 100.4. Although that didn't happen after Infusion 2, I decided to visit the ER nonetheless. Upon arriving at the ER, my temperature was 102.2 and my blood pressure was an eye-opening 105/44. Yikes!

The nurses and doctor at the ER tested everything; blood, urine, x-rays and then blood again! I was given Motrin and an intravenous drip of, I assume, saline solution, and was told that they'd need to call the hematologist for instructions. After quite a delay, and checking my temperature and seeing it at more or less normal, I was released.

I had hoped that there would be fewer and less severe side effects in this round of chemotherapy. I hope this will be the last of it, at least until Round 2 in January.

Infusion 3 of Round 1

We traveled to the edge of Big City to have infusion 3. My appointment was at 4:30 pm. After I graciously thanked Nurse K for their thoughtfulness in scheduling every appointment to coincide with the worst of the Big City rush hour traffic, she took my vital signs as always. Of slight concern was my blood pressure, a surprising 115/47.

After my compliment, she used her emory board to dull the needle (just kidding) and administered one subcutaneous injection. It was over in ten minutes.

All in all, I feel very good. My next round starts January 6.

I am glad to have round 1 behind me before the Christmas season and all the eggnogs I intend to consume!

I hope you all have a great holiday season and please keep those positive vibes coming my way!

Infusion 2 of round 1

I hit a small speedbump in my ongoing infusions. First of all, After Infusion 1, We returned home in Big City's horrible traffic and when I went to bed, my stomach felt queasy. I awoke several times during the night feeling nauseous. I had an unpleasant, restless sleep with a churning stomach.

Remarkably, I visited my local drugstore to pick up a prescription refill unrelated to my lymphoma. The clerk reported that they also has a presciption to give me that was ordered by Dr. Hema5 (or is he #6? I've had so many). He ordered it December 2. I asked what it was for and she said it was for nausea. In the famous words of the warden, "What we got here is failure to communicate."

I next reported to the infusion room again for a presumably short infusion of one of the two chemicals I am being administered. It went smoothly at first, and the infusion was done in 15 minutes.

Nurse R has this funny thing she does, "Would you mind hanging out for a few minutes so we can take your vital signs?" Since she hasn't unhooked me from all of the infusion pumps and removed the long, sharp needle, the question is moot; it amounts to, "Sit, Fido, sit!"

When my vitals were taken, I was found to have a fever of 99.5 or so. She said that we'd wait a few minutes and see if it's coming down. After five minutes or so, it was higher, eventually reaching, after several tests, 100.3. While this was quite concerning to the nurses, I actually felt just fine. After several nurse huddles and telephone consultations, after the temperature got to 99.1, I was sent home to test myself and instructed that if the temperature got to 100.4, to report to the Emergency Room!

We got on the road just in time to confront Big City's worst rush hour traffic in the rain! We blazed home at an average speed of 11 mph!

I tested my temperature immediately upon finally reaching home; it was 99.5. Two hours later, it was 97.9.

Today, the next day, I feel fine! I am looking forward to Infusion 3 of Round 1 later this afternoon. Round 2 will start January 6. I suspect that it will go more smoothly since I know what to expect and now have that great nausea prescription!

All in all, despite this speedbump, These treatments are going well, much better than my chemo in 2009.

Infusion Day 1...

...of a trillion. Like our federal govenment, I only think in trillions.

We arrived at the location nearest Big City that does infusions that is nearest our retirement cabin out here in the woods. We were asked to select a suitable infusion alcove. Each alcove contains the usual recliner, a guest chair, infusion pumps, counters and a sink! This is a big change from my last experience with infusion. The last time, there was one big room with 15-18 recliners, each with a guest chair adjacent. Today we got an alcove.

Nurse R met with us and carefully explained everything and proceeded with the infusions. I was given various preparatory medications mostly intravenously, but a few were administered orally.

Finally, after about noon, we got to the good stuff! As I have previously mentioned, the infusion is started at a very slow rate of flow and increased until side effects appear. In my case, side effects amounting to a red face and a slight fever, appeared at about 87% of the hoped for maximum flow. I had tolerated the infusion well at 75% and so, after consultations with the doctors and a nurse huddle, infusion was stopped until the redness subsided and the fever dropped. That took 15 minutes or so, during which I was up walking around, glad to be untethered and checking out the available free snacks!

Infusion was restarted and then finished at 75%. Aside from being tired after a long day, I feel very fine. If this is the extent of side effects, this process will be a relative breeze. However, just one swallow does not a summer make (thanks, Aristotle!), one infusion may not set a trend or set a precedent. Perhaps more side effects are coming. I hope not.

So far, so good!

I appreciate the calls and emails and FaceTimes from all of you. You words of encouragement lift my spirits greatly. I appreciate them!

Patients, start your infusions!

Arrangements are in place to start infusion in early December. The sessions are on two successive days. The length of time it takes for each depends entirely on how well I tolerate it. In essence, if there are few side effects, they will increase the flow rate until the side effects are moderate. If the side effects are severe, they will slow the flow rate.

Having done this previously, I expect the process to take most of the day, that is, 5-6 hours. I plan to take a laptop and entertain myself as well as I can when I’m feverish, nauseous, et al.

I opted to get started before Christmas as the sooner I start, the sooner I finish! I’d love to have this process done and full recovery made before vacation season.

A decision is made.

My adorable wife and I have been discussing my treatment options. She is included in the decision because she has been by my side supporting me throughout this ordeal; not just the recent onset of symptoms, but right from the beginning, some ten years ago. Whatever is decided, therefor, involves her as well.

I was given two practical options by the doctor. First, an oral medication taken once per day for life. The medication is very expensive and my cost, even after insurance, would be quite high.

The second is an infusion done on two successive days once every four weeks for six cycles totaling 24 weeks. Once the treatment is done, I will be finished, done, released, free at last, until and unless my M-spike, IgM, anemia, weight loss, et al return. When I had the same drugs previously, I was symptom-free for about ten years.

The infusion therapy is covered by Medicare as treatment rather than a drug. The ultimate cost to me would be relatively low and, of course, paid for in 24 weeks.

The infusion therapy uses the same drugs that I had previously. I suffered very uncomfortable side-effects as you know if you re-read the earliest entries in my blog..

I have decided, all things considered, to undertake infusion. I will communicate my decision with the doctor’s very helpful patient navigator tomorrow.

I accept that I am trading off possibly worse side-effects for one and done.

I don’t yet know of course, if I will start treatments immediately or after the holidays. I will post when I know.

New challenges and a new doctor

I have not been posting as frequently as usual because I have been faced with very difficult challenges. As I have previously reported, the numbers shown in blood tests that indicate the presence and vigor of my lymphoma have been increasing steadily. My IgM number is now 2093; the normal range is 45-281. Of greater significance is that the number just keeps climbing; one year ago, it was 1359 and two years ago, it was 700.

I have also suffered rather alarming symptoms related to the anemia that accompanies lymphoma. At the start of this year, I weighed 178; on October 15, I weighed 163. I have been tired and feeling weak.

At my regular three-month visit with the doctor, he shrugged off the symptoms and said that he didn’t recommend treatment at this time. I had, for some time been losing confidence in this doctor. When he announced that his practice had recently hired a specialist in lymphoplasmacytic lymphoma, I jumped at the opportunity to switch my care to a new doctor.

I visited the new doctor a few days ago. He recommends treatment and offered three possible therapies; each with its own set of side effects and costs. The treatment he recommends the highest is an oral medication that has a retail cost of...fasten your seatbelts, gentle readers...$14,000 per month.

Of course, the subject of insurance, in my case, Medicare Part D, comes into question here. As luck would have it, we have just completed a study of our Part D insurance and decided to change to a different carrier. You can imagine my anxiety when I telephoned the new carrier, as of January 1, to ask what my out-of-pocket would be for said prescription. It is not a happy number.

I am still evaluating my options. I promise to post more as I know more.

How's your bone marrow?

I visited with Dr. M to discuss the results of my bone marrow biopsy. He said that the marrow that was extracted contained roughly 35% cancer cells. While that sounds alarming to me and, I suspect, every one of us, he said it wasn't horrible like 85%. He said that the results don't suggest immediate treatment. He suggested watchful waiting.

One reason that doctors might recommend observation is that the indolent (slow growing) lymphomas can remain stable for long periods of time, and sometimes regress spontaneously. As well, new therapies are developed seemingly every day. It's feasible that better treatment protocols may become available when it is time to treat.

However, these readings do suggest that I be more closely observed by the doctor. He now will see me every three months instead of every six months. I am also to have a CAT scan to check the size of my lymph nodes and spleen. In the docs words, "We want to see if your spleen is the size of a football." Thankfully, we all still have a sense of humor about all of this.

He also recommended a bone density test which will be done at my primary care facility very nearby.

All in all, not a bad report. Any visit that ends with no immediate treatment required is a good visit!

The staff at Dr. M's office are so kind and so professional. I am lucky to have excellent health care practically at my door step.