Good News Again

Stable:

Since April of 2016 my treatment regimen has been Pomalyst (pomalidomide) and Darzalex (daratumumab), with dexamethasone in the early months.  That combination brought my IgG and M-Spike down to the lowest levels seen since diagnosis 14 years ago.  M-Spike has not been above 0.5 g/dL since August 2016, and it was 0.5 again last Tuesday.  IgG was 536 mg/dL, about where it has been for more than a year.  This is wonderful.

The Darzalex protocol (with Pomalyst) calls for infusions once per week for 8 doses, then every other week for 8 more, and finally once per month "until disease progression."  So far so good.  Darzalex is an infusion that takes several hours, but I get a blood draw, then a visit with the hematologist, and finally the infusion, and I'm still out soon after noon.  Some people bring a book to read - I bring my laptop and it's no problem at all.

I take it easy for the rest of the day, and life is back to normal the next day.  Darzalex is given with some prednisone (or dexamethasone) to reduce the likelihood of an infusion reaction, and I do feel some side effects from that steroid, but none from the Darzalex.  Life is good.  28 Infusions of so far - I wonder what my life would have been like without that potent, innovative new medication.

Pomalyst has been part of my treatment regimen, 2 mg daily, for all but one of the last nine years.  For the past two months my doc and I have tried cutting that to 2 mg for 21 of each 28 days, with no discernible increase in M-Spike or IgG.  Perhaps we'll reduce it more, we'll see.

PET Scan:

This was encouraging too.  "Essentially complete metabolic response of lytic bone myelomatous lesions to therapy. No new FDG avid lesions."  In other words, the old myeloma hot spots are gone and there are no new ones.  Three other findings were worthy of note:

1. Some inflammation at the bottom of the esophagus.  This matches my own symptoms of occasional acid reflux.  Something to deal with.
2. Stable, chronic thyroiditis.  Yup.  Dealing with it.
3. "Reactive FDG activity at the origin of the right hamstrings."   No kidding!  I've been battling this running injury all summer, and my sports doctor recently used ultrasound imaging to diagnose it.  He'll be happy to hear that the PET scan confirms his diagnosis.  Cool!  I've requested a disc with the actual PET images (always do), and can't wait to see it myself.

Transplant:

In 14 years with myeloma I have not had a transplant, because for all of that time the medications have kept my myeloma stable.  I asked the doc if there was any reason to think about collecting stem cells for an autologous SCT now, and he thought not.  I'm already 76 and currently on a good regimen, with several new therapies to try when the current one fails, and with more therapies in the FDA-approval pipeline.  By the time those options are exhausted, I'll hopefully be too old for any transplant doctor to consider me a good candidate.  So now my goal is to become the myelomiac to live the longest without a transplant.  Well, somebody's got to do it.

Stable Again

June 2, 2011

I'm still on the pomalidomide drug study at Mayo Clinic, and the cancer markers seem stable after the 42nd 28-day cycle. IgG is down a little, M-spike up a little, and Lambda light chains are down. Par for the course. I take just 2 mg of that miracle molecule every night, along with some aspirin and an anti-viral to ward off shingles. I've enjoyed well over three years of a high-quality lifestyle, including 25 marathons, since starting pomalidomide.

Other test results are not quite as comforting though. For some reason calcium is a little high, and two different kidney markers are at the top edge of the reference range. I probably haven't been drinking enough water. Those tests are done every month, and we'll see how they look next month. Dr. RH didn't even mention them, so he probably wasn't concerned.

TSH is a thyroid marker which goes high when thyroid output goes low, and TSH was a little high, for the first time in years. It does bounce around some, and I'll get another reading in three months. I take a couple of supplements for thyroid, but haven't changed that.

Some Current Test Results:

Test		Mar 09		Apr 07		May 05		Jun 02		Remarks
M-spike g/dL		1.0		1.0		1.0		1.1		Best tumor measure?
IgG mg/dL		1050		1080		1130		1110		Best tumor measure?
L FLC mg/dL		2.50		2.08		3.07		2.52		L Free light chains
Calcium mg/dL		9.6		9.9		9.4		10.4		High
Creatinine mg/dL		1.0		1.2		1.1		1.2		Kidney, OK
HGB g/dL		15.2		15.5		14.7		15.2		Hemoglobin, good
RBC M/uL		4.40		4.27		4.11		4.13		Red cells, low
WBC K/uL		5.3		4.9		4.6		4.9		White cells, OK
ANC K/uL		1.61		1.90		1.90		2.40		Neutrophils, normal!

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Pot roast with lots of onions, olives, potatoes, sweet potatoes, and interesting cheese.

Colloid Nodule of the Thyroid

The thyroid nodule (previous post) is a "colloid nodule," apparently quite benign. Doctor L says take another look with ultrasound in six months or a year, see if it's growing. Otherwise it's fine if it isn't causing problems breathing or swallowing.

It's not. This drama is over.

I did actually increase my iodine intake a couple of months ago, so maybe the treatment, if any is needed, is already underway.

Hearing Exam Leads to Thyroid Biopsy

My hearing isn't great. Down about 20 db in one ear, which is the bottom of "acceptable," and down much more in the other. So I visited an audiologist who recommended hearing aids, but who first scheduled me with an ear-nose-and-throat (ENT) specialist because she thought the big difference between the two ears could indicate a medical problem. I've had this difference for decades, but I went anyway.

Dr D, the specialist, did an examination of the ears and of course found nothing. Then, because he is an ENT, he looked in my nose and checked my throat. "Did you know about this nodule on your thyroid?," he asked. "News to me!," said I. He explained that he always does the cursory examination (he may not have used the word "cursory") without expecting to find anything, but this time he did. He said it was about a centimeter and a half in size, and recommended an ultrasound exam to check it further.

So today I expected an ultrasound examination of a nodule on the thyroid. But it turned out to be ultrasound imaging immediately followed by a fine-needle biopsy - both had been scheduled because the nodule was large. I believe that the biopsy is indicated for nodules exceeding 1 cm in size, and K, the technician, said this one was 2.6 cm in the largest dimension. As she pointed out, that's just over an inch. I'm a little surprised that I didn't know about it.

They removed my shirt so that it would not get Betadine on it, then swabbed the area abundantly with the Betadine, and finally applied a hypo of lidocaine. Almost immediately, Dr M, the radiologist, started taking samples of the nodule with very small gauge (#25) needles. I felt the first two needles, because the lidocaine hadn't quite taken effect, but the pain was really quite minor so I didn't complain. Anyway, complaining would mean talking, which is not a good thing with a needle in the neck. The nodule was close to the carotid artery, which they refer to as "Big Red" and avoid at all costs.

Dr M explained that the nodule was not homogeneous, and he was taking samples from different areas. I couldn't see the ultrasound screen, so I watched him. Once he had the needle in my neck his eyes never left the screen until he withdrew the needle again. Totally guided by the imaging. He took four samples, then stopped, explaining that they would send these to the pathologist who would tell him in a few minutes whether he had enough cells.

Meanwhile K asked about my myeloma and shared that she herself was a 2 1/2 year survivor of an allogenic umbilical-cord stem-cell transplant for leukemia, done at the University of Minnesota. Her doctors had said that her acute leukemia was not treatable with chemotherapy, but she had a 50/50 chance of survival with a stem cell transplant. She chose allogenic, despite the lifelong issue of graft-versus-host disease, because she believed that the result, if she survived the transplant, would more likely be a cure. So far so good! No trace of the leukemia. After two years they call it "remission," and she's there. She looks great. Perhaps 25 - 30 years old, I hope she has a long life ahead of her.

Back on the biopsy table, Dr M informed me that the pathologist was not satisfied with the sample. Thus more lidocaine, and this time a larger-bore biopsy needle, a #22. Apparently, needle sizes are like wire sizes, smaller numbers indicate larger needles. But I didn't feel any of these needles, and I think he used six more. He actually ran out and had to use one of the smaller ones.

We waited another 20 minutes and were told that they probably had enough. Dr M did mention that the pathologist had not seen cancer cells in his cursory examination of the samples, and that's a good sign. It can change, of course. In addition, there is always the chance that the pathologist will change his mind about the size of the sample, but if that happens we'll schedule another biopsy and this time they'll use a needle that can cut off a chunk. They don't like to do that on the neck, said Dr M, but he didn't explain why. Of course there's always the risk of hitting Big Red, and I suppose there's also a risk of hitting nerves or something. There's a lot of stuff crammed into the neck. Come to think of it, they made me sign something after the initial ultrasound and just before the biopsy. Perhaps it was the "informed consent" sheet, which of course I didn't read. Who reads a clipboard when they're already flat on the table?

It takes the pathologist 48 hours to crank out the final report, according to K. So I guess I won't know until Friday at best. In the meantime I'm not too worried. My thyroid function tests have been normal, and what the hell, I already have cancer.



Breakfast: Organic oatmeal with dried cranberries, blueberries, organic apple, organic pear, organic strawberries, orgnic walnuts, and organic nonfat milk. Not shown: Two organic eggs cooked in good organic oils.