Good News Again


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.


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.

New study could pressure VA to expand Agent Orange benefits

Four-ship formation on a defoliation spray run.                                         U.S. Air Force photo

A new study has found a close relationship between Agent Orange exposure during the Vietnam War and high blood pressure, a conclusion that could lead the Department of Veterans Affairs to dramatically expand the number of veterans eligible for compensation.

The study, published last week by VA researchers in the Journal of Occupational and Environmental Medicine, found a higher rate of hypertension among members of the Army Chemical Corps who handled Agent Orange during the war compared to those who didn’t. Corps members who served in Vietnam but did not spray the chemicals also had a higher rate of hypertension than their peers who served outside Vietnam.

Both results were statistically significant and add to a body of evidence linking Agent Orange exposure and hypertension.

The findings come 41 years after the close of the Vietnam War and decades since the last supplies of Agent Orange were incinerated. Since then, veterans have become increasingly distrustful of the VA. They maintain that their exposure to Agent Orange, which contained the toxic chemical dioxin, has harmed their health and has been passed on to their children.

A VA working group has been studying the latest scientific literature since March to determine whether any illnesses should be added to the agency’s list of diseases for which vets are automatically entitled to compensation if they served in Vietnam. Specifically, the group has been looking at new evidence linking bladder cancer, underactive thyroid, Parkinson’s-like symptoms and hypertension to Agent Orange exposure.

The VA had been expected to announce its decision this year, but officials now say that will be left to the administration of President-elect Donald Trump.

“For this administration, the deadline for proposing new rules for potential new presumptions [of service connection to herbicide] has passed, and this will become work for the new administration to take to completion,” VA officials said in a written statement first reported last week in Stars and Stripes.

Hypertension is the most common ailment among veterans seeking health care at the VA. It is one of the most common ailments among older adults generally.

The study released last week found the prevalence of hypertension among members of the Army Chemical Corps to be higher than among other aging veterans. Although most of the Agent Orange used in Vietnam was sprayed from Air Force planes, the Army Chemical Corps also sprayed the herbicide from hand sprayers and helicopters.


Cycle 4 Week 1 Day 1 Carfilzomib/Dex and Day 1/21 Revlimid 10 mg – January 30 2013

Drove to St. Luke’s Hospital in Twin Falls, Idaho this morning for my monthly visit with Dr. Padavanija and the beginning of Cycle 4 Carfilzomib/Dex. Roads were dry and the 135 mile drive pleasant.

Waiting for my appointment at St. Luke’s Hospital January 30 2013.

Dr. Padavanija had just talked with Dr. Clay Smith at UCH (Aurora, Colorado) via telephone, so we were all on the same page.

Remember, during my last Cycle 3, we HELD carfilzomib (27 metered square) and cytoxin (500 mg) for low counts, so I have not had any chemo since 9 Jan 2013. However, I continued to take Cycle 3 Revlimid 10 mg finishing 22 Jan 2013.

History of Carfilzomib/Dex/Cytoxan/Revlimid USE (Each Cycle consists of 3 weeks (2 times per wk) followed by a rest week).
Cycle 1: Start 10 Oct 2012 with Revlimid 10 mg (1/21).
Cycle 2: Start 27 Nov 2012 with Revlimid 10 mg (1/21).
Cycle 3: Start 2 Jan 2012 with Revlimid 10 mg (1/21). Added Cytoxan 500 mg. HELD Carfilzomib and Cytoxan Week 3 of Cycle 3 for low counts and continued Revlimid 10 mg
Cycle 4: Start 30 Jan 2013 with Revlimid 10 mg (1/21). HELD Cytoxan until counts recover
My 30 Jan 2012 CBC results: WBC 2.2 (norms 4.5-11) slightly up , ANC 1.44 (norms 1.9-8.8) up , Hg 8.9 (norms 12-16) slightly down, Platelets 141 (norms 140-440) -woohoo normal), LDH 583 (St. Luke’s norms 313-618) normal. 
Here is a chart looking at the values overtime.
Since my Hg remains low at 8.9 with an elevated MCV (mean corpuscular volume or the average size of a red blood cell) at 102.5, Dr. Padavanija drew a B12 and thyroid levels. I don’t have those results yet. My Chem Panel was normal except of a slightly low Potassium (K at 3.4) and I was advised to eat more banana and potato).

Dr. Padavanija was in a agreement with conscious sedation for my next bone marrow biopsy and has scheduled it for 20 Feb 2013 at St. Luke’s Hospital, Twin Falls, Idaho – YEA! At least I never have to look at that torture anymore.
Dr. Padavanija looked at the neck incision for my Bard Power Port which was placed 20 Dec 2013 and a stitch seems to be working itself out.
I also had a skull x-ray of the small hard lesion growing on my forehead and an x-ray of my left hip which hurts only when I lie on that side (results pending).
On to the Infusion Center where I was pleasantly surprised that they had ordered and obtained the un-foam padded Huber needle for my Bard Power Port along with plain tegaderm vs the tegaderm impregnated with white film which my skin reacts to. I’ve been putting Emla Cream (deadens the area they put this sorta big needle in to) on my port site and it works great for me.
I received my monthly dose of Aredia 30 mg. I remembered to take Claritin and a plain Tylenol with it, so I’m hoping I have few, if any, side effects this month.
Stayed at the motel in Twin Falls and woke in the night with an Aredia headache all over my head. I drank more water and went back to sleep. Returned to St. Luke’s Hospital Infusion Center for my 2nd day of carfilzomid/dex. RN Vicki was able to get me in and out in less than an hour, which I am always appreciative of because of the 2 1/2 hour drive home to Mackay.
Was home by noon and went to get Kemmer at Ron’s. Stopped at Ivies (grocery store) wearing my mask. I always try to go while the children are still in school to avoid their potential germs.
Came home and walked Kemmer 0.54 miles around the neighborhood. Not much of a walk, but I was tired.

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:


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