No News Is No News
We still don't know if the current immune therapy is working.  Are the vivid PET scan hot spots just "flares" of inflammation caused by my own immune system attacking the myeloma cells, or are they actually increases in the myeloma tumor burden? Yesterday's MRI of the thoracic spine may give us the answer, when those 3D images are compared with a previous MRI from last October.  That takes an expert radiologist, and results should come today.  A preliminary view seemed to suggest no changes in the bone structure of my vertebrae, but I'd like that confirmed before I run again. If you haven't heard...
Source: Myeloma Hope - February 11, 2016 Category: Cancer & Oncology Source Type: blogs

Immune Therapy Flare
Wednesday, February 3, 2016: PET Scan Results: Today was PET scan day.  I had once thought that the PET scan would show definitively whether or not the current regimen was working.  However I am currently on a study of immune therapy, and last week Dr WG prepared me for today by explaining that the current study medication could cause the PET scan hot spots to show a "flare."  That is the therapy, if it is working, could actually cause previously-existing hot spots to appear larger or more intense than they did in the PET scan of four months ago, because of inflammation caused by my own immune sy...
Source: Myeloma Hope - February 4, 2016 Category: Cancer & Oncology Source Type: blogs

Scary or Encouraging?
My myeloma is the Immunoglobulin G (IgG) type, so the doctors and I consider that the blood proteins IgG and M-spike (monoclonal protein) are the best markers for my tumor burden.  Last Tuesday IgG jumped 21% from 1390 to 1680 mg/dL, the highest value in years and the largest jump I have ever seen between two measurements.  That jump happened in just one week. Either the myeloma has suddenly gone crazy, or something else is going on.  This blog is titled Myeloma Hope, so I hope that something else is happening, something good. My doctor ML warned me in advance that the myeloma markers might not even be me...
Source: Myeloma Hope - January 18, 2016 Category: Cancer & Oncology Source Type: blogs

Modestly Good News
Tuesday, December 29, 2015: Results: My new treatment regimen is three weeks old now, and my blood is being checked every week at Mayo Clinic (182-mile round trip).  For the first two weeks the myeloma markers went up - the treatment didn't seem to be working at all.  Nevertheless, Dr WG and I agreed  that I would continue on the study for the first eight weeks, then get the scheduled PET scan to get the best possible information about the state of my myeloma. However (Yay!), my primary myeloma markers went down a bit at the end of this third week.  IgG dropped 12% from 1520 to 1350 mg/dL, and M-spik...
Source: Myeloma Hope - December 31, 2015 Category: Cancer & Oncology Source Type: blogs

Bone Marrow Biopsy
PET/CT scan, PET/MRI scan, 46 vials of blood, two 24-hour urine collections, two more urine samples, ECG, Skeletal (x-ray) bone survey.  That is the list of tests required for qualification and for Cycle 1 Day 1 of my new myeloma therapy trial.  Not to mention height, weight, blood pressure, temperature, walking blood oxygen, and a short physical exam. I won't name the medications involved in the trial yet because, in case they don't work for me, I wouldn't want to discourage anyone else from using them.  One of them is already a whiz-bang success for certain other cancers.  I can say that the study do...
Source: Myeloma Hope - December 11, 2015 Category: Cancer & Oncology Source Type: blogs

Two More Bone Lesions
We have known for months now that the (unnamed) oral study regimen I've been taking was doing nothing for my numbers, IgG and M-Spike, except holding them stable.  We held out some hope, however, that it might at least take care of the lesion in my T5 vertebra. Alas, the opposite has happened.  Last Friday's PET/CT shows that the T5 lesion has increased in intensity from 6.3 to 10.1 SUV max.  Further, there is a "tiny" lesion with SUV max of 3.7 in T9, and one in the right scapula with SUV max of 5.2.  The study regimen works very well for some people, I'm told, but my myeloma isn't fazed by...
Source: Myeloma Hope - October 14, 2015 Category: Cancer & Oncology Source Type: blogs

PET-CT vs PET-MRI
Mayo in Rochester is doing a study of PET/MRI, comparing it with PET/CT for myeloma patients.  A standard full-body PET/CT gives a patient one of the largest doses of radiation of all the imaging procedures, but most of this is due to the CT, not the PET.  The CT is required because the PET doesn't by itself provide enough information to determine where the bright spots from the PET are actually located.  PET doesn't distinguish between bone and soft tissue - it just sees the radioactive sugar molecules that have been gobbled up by active cancer cells. March 2015 - PET/MRI scannerarrives at Charlton ...
Source: Myeloma Hope - September 25, 2015 Category: Cancer & Oncology Source Type: blogs

Better Still
Today I felt much more like myself, even went for a stroll and mowed a little bit of the lawn.  Temps are normal and the pulse oximeter regularly shows numbers in the high 90's. The pneumonia is on the run, and I won't post any more about it here unless there is a dramatic reversal. (Source: Myeloma Hope)
Source: Myeloma Hope - August 3, 2014 Category: Cancer Tags: pneumonia Source Type: blogs

Recovering at Home
They let me out of the hospital this noon, and I like being with my loved ones.  I feel a little better than yesterday, but the regimen is about the same at home as it has been in the hospital. Levaquin 750 mg once daily, probiotics to mediate the effect of the Levaquin on the stomach, lots of sleep. I'm pretty sure that the pneumonia is viral, not bacterial, because it has responded so slowly to three different antibiotics.  Nevertheless I'm taking the Levaquin, despite its risk to the Achilles tendon, in case it really is a virulent bacterium. Right now my temp is generally around normal, which is a definite...
Source: Myeloma Hope - August 2, 2014 Category: Cancer Tags: pneumonia Source Type: blogs

Feeling a Little Better
Still in the hospital.  My temperature seems to have stabilized near normal, I'm coughing a little less, and blood oxygen (without supplemental oxygen) is up in the 94% range.  However, pulse rate and respiration rate are unchanged and much higher than normal, so the jury is still out. For the medically inclined:  I was started on a Z-Pak (azithromycin) Monday, then in the hospital they added a cephalosporin IV antibiotic Tuesday.  By today (Thursday) we didn't see much progress, so the hospital doctor finally talked me into oral Levaquin, dropping both of the others. That dose was this noon , so it's ...
Source: Myeloma Hope - August 1, 2014 Category: Cancer Tags: pneumonia Source Type: blogs

Pneumonia Again
July 30, 2014 CRAP! Pneumonia certainly puts a crimp in marathon training. I have a marathon coming up in early september, with a good plan for ramping up carefully to a 20-mile long run three weeks ahead. That's what you do. Setting aside the obvious life-threatening aspect of pneumonia, however, at the very least it puts a big crimp in the training plan. I've had pneumonia five times in my life now; three times it was viral, once bacterial (last February), and now as-yet undetermined. In February the high-power IV antibiotics took effect within a day, and got me out of the hospital in two days. This time I've been in a...
Source: Myeloma Hope - July 31, 2014 Category: Cancer Tags: pneumonia Source Type: blogs

Runner's World Cover Contest
I have entered a contest by Runner's World Magazine to determine who will be on their December cover. I hope you will click here http://covercontest.runnersworld.com/entry/655/ and vote for me. You can vote every day, and that would be marvelous. The contest goes until mid-August. You can help even more by spreading the word on your own facebook or twitter page - let's make it viral! Be sure to include the magic hashtag #RWCoverContest. Thanks! Don W (Source: Myeloma Hope)
Source: Myeloma Hope - July 25, 2014 Category: Cancer Source Type: blogs

We Miss Caroline Shallman
After a courageous three year battle with ovarian cancer, our sweet daughter-in-law Caroline died Saturday evening, July 12, 2014.  Here is a link to her husband David's heartfelt goodbye message on caringBridge:  http://goo.gl/SsKFF4 Information about the memorial service is listed here: http://goo.gl/Khg6bo Here is her obituary in the Minneapolis paper: http://goo.gl/OAPuDo (Source: Myeloma Hope)
Source: Myeloma Hope - July 15, 2014 Category: Cancer Source Type: blogs

Medical Innovation Ecosystem
Some alarmists complain that the cost of new, innovative cancer treatments will soon bankrupt the health care system, arguing that we must find a way to limit patients' access to them. When we point out that the new treatments represent only 0.5% (one half of one percent) of health care costs, those people claim that it doesn't matter, because the expense of new treatments is increasing at an increasing rate, and we must do something. Horsefeathers, I say. The sky is not falling. Instead, the system is working just as it should, exactly as designed. A company innovates, inventing a new treatment and, after years of trials...
Source: Myeloma Hope - June 9, 2014 Category: Cancer Tags: ASCO Medical Innovation Ecosystem My Life Is Worth It petition Source Type: blogs

My Life is Worth It
My wife, my daughter, and I were exhibitors at the annual meeting of the American Society of Clinical Oncology (ASCO) last weekend. At the invitation of ASCO, insurance companies and doctors were trying to invent a framework for limiting patients' access to the newest and most expensive cancer treatments, thereby providing those treatments only for those patients whose lives are judged worthy of them. In the booth, I'm on the left Unfortunately, we patients have been left out of that discussion altogether, so we were in a booth, making the point that patients should most definitely have a voice in any such discussions,...
Source: Myeloma Hope - June 3, 2014 Category: Cancer Source Type: blogs

Pomalyst Study Cycle 80
Thursday, May 1, 2014,    Pomalyst Study Cycle 80: IgG was higher today than it has been for years, though only slightly. Last month IgG was 1270 mg/dL, now 1340 this month. However, M-Spike was 1.1 g/dL last month, down to 1.0 this month. 1.0 is right in the middle of the range of M-Spike for the last several years. So what are we to believe? Both of those changes are probably within the accuracy limits of the test anyway, so let's call it a draw; my myeloma is still stable. For whatever it's worth, the Lambda and Kappa light chains didn't change too much either I'm happy for another month, Pomalyst is still ...
Source: Myeloma Hope - May 12, 2014 Category: Cancer Source Type: blogs

Cardiac Reserve
Thursday, March 6, 2014    Pomalyst Study Cycle 78: My Doctor L and the crew of three CNP's were all unavailable for this visit to Mayo, so I saw Dr MG instead. In terms of the Mayo Clinic hierarchy, that's an upgrade. We had met before, but he had not seen me as a patient. We quickly agreed that the myeloms was still stable, and he in fact commented that the Pomalyst trial has been a home run for me. Indeed! Six years now, and still counting - I am so fortunate. IgG was up just slightly, but Lambda light chains are down a little, and maybe both changes are within measurement error anyway. No change. I am starti...
Source: Myeloma Hope - March 11, 2014 Category: Cancer Source Type: blogs

Good News from the Doctor
No pneumonia breath sounds, normal CBC, normal energy level.  Although Doctor S showed me what he thought was still a slight shadow of the pneumonia remaining on the x-ray, the radiologist’s report says "resolution of pneumonia on prior x-ray, with lungs now clear."  Hoo ha!  Anyway, two doctors now have told me that the x-ray results always trail the actual resolution of the pneumonia, so even if Dr. S is right and a little bit shows, the actual pneumonia is probably gone. Dr S gave me the go-ahead to do whatever I want to do, including a marathon in two weeks, guided only by my sense of fa...
Source: Myeloma Hope - February 17, 2014 Category: Cancer Source Type: blogs

Home Again
The hospital let me go yesterday afternoon.  I slept well at home last night, and I feel much better.   The fever is gone, and I have an appetite, but the cough remains, with the stuffy nose, and loss of energy.  I'm still on an oral antibiotic, the same type that seemed to be working so well against the pneumonia in the hospital, and will see my regular doctor in a week.  Path to full recovery. I still don't know why the hospital staff was gowning up every time they came in the room the first day.  I forgot to ask the doctor.  They stopped the gowns after a day, though, and on the last day m...
Source: Myeloma Hope - February 10, 2014 Category: Cancer Source Type: blogs

Oops - Intensive Care
Saturday, February 8, 2014,    Breaking News My sweeties and I ran a lovely marathon in New Orleans last Sunday. On Monday we flew home, and by Tuesday morning I felt a scratchy throat. That came on fast, knocked me flat (weak, fever, aches, severe cough, nausea), and by Thursday it was diagnosed at Mayo as Influenza Type A. Yes, I did get the flu shot, last November. By Friday morning I was having trouble breathing and my local doc found pneumonia. He checked me into the ICU in Lakeview Hospital in Stillwater, MN. The hospital staff treat me with respect, lots of smiles, but they put on gowns, masks, and glove...
Source: Myeloma Hope - February 9, 2014 Category: Cancer Source Type: blogs

ASH 2013 - Chronic Infection, MGUS, & Myeloma
Paper 3116: Chronic Infection, a Neglected Cause Of Development Of Monoclonal Gammopathy Of Undetermined Significance (MGUS) and Myeloma According to this French paper, it is well known that certain chronic infections can cause lymphomas and chronic leukemia, because the infection annoys the cells until they ultimately make a mistake and become malignant (my words - theirs are undoubtedly more clinically correct but well above my pay grade).  Apparently, something similar can happen to our plasma cells, turning them into malignant myeloma cells. Indeed, the International Myeloma Foundation says "Several studies...
Source: Myeloma Hope - December 11, 2013 Category: Cancer Source Type: blogs

ASH 2013 - Maintenance Matters
This study confirms again that they are correct - Rd thoroughly trounces MPT. For those of us seniors with access to Revlimid, though, this study clearly demonstrates the advantage of Revlimid maintenance after initial therapy.  It studied 1,623 newly-diagnosed myeloma patients over age 65 or ineligible for transplant, in three study arms: (A) Rd until disease progression; (B) Rd for 72 weeks or progression; and (C) MPT for 72 weeks or progression. Some results for patients on continuous Rd versus those on 72-week Rd: Median progression-free survival: 26 months versus 21 months. Four-year overall survival: 59% ver...
Source: Myeloma Hope - December 11, 2013 Category: Cancer Source Type: blogs

ASH 2013 - Skip the Transplant
ASH is the American Society of Hematology, which has its annual meeting in early December each year, called the ASH Conference, or just ASH.  I will be blogging on several topics, but this one, though it is "just" a poster talk and not an oral presentation, seems extremely important because it suggests a change in the standard of care for newly-diagnosed patients. Paper 3180: Lenalidomide and Dexamethasone Alone Is Equivalent To Lenalidomide and Dexamethasone With Autologous Stem Cell Transplant In Newly Diagnosed Multiple Myeloma: Interim Study Results Of a Randomized Trial. The authors are from Columbia ...
Source: Myeloma Hope - December 10, 2013 Category: Cancer Source Type: blogs

Still Stable
Thursday, September 19, 2013,    Pomalyst Study Cycle 72: M-Spike was 1.0 g/dL this morning, where it probably should have been last month when it dropped to 0.9 for the first time in almost four years. IgG was almost unchanged, up less than 2%, from 1110 mg/dL to 1130, probably well within the measurement error for that test. In any case I trust the IgG result a little more than M-Spike, and I think the change from last month is negligible. Lambda light chains are still above the reference range, barely, but Kappa light chains have dropped by almost half. I don't know what to think of that - it could be an omi...
Source: Myeloma Hope - September 22, 2013 Category: Cancer Source Type: blogs

Dental Implant Procedure
My Dental Implant This post has nothing to do with myeloma, except that I am able do implants now because I am not (yet) taking any bisphosphonates. I'm writing it here because it was an interesting experience and I want to keep a permanent record of it. My left lower jaw is running out of teeth. Number 17, the "wisdom tooth," has been gone for 50 years (possibly explaining the lack of wisdom). Number 18, a huge molar, is in place and working, the only remaining chewing surface. Numbers 19 and 20 have been gone for years, and number 21 has been slowly "resorbed" (dissolved from the inside - unusual) o...
Source: Myeloma Hope - September 14, 2013 Category: Cancer Source Type: blogs

Best M-Spike in Four Years
Thursday, August 22, 2013,     Pomalyst Study Cycle 71: M-Spike was 0.9 g/dL this morning, compared with 1.1 last month. The last time that M-Spike was 0.9 or less was December, 2009, so we had a little celebration this morning. IgG was down as well, from 1290 mg/dL to 1100, although it has been at least that low three other times this year, so the combined results are definitely good news but probably not a breakthrough. Lambda and Kappa light chains were both just above the tops of their respective reference ranges. That seems to be a new normal for me - they're both slightly high. The ratio was fine. ...
Source: Myeloma Hope - August 27, 2013 Category: Cancer Source Type: blogs

Avoiding Myeloma Progression
Pomalyst Study Cycle 70: IgG was basically unchanged this month, compared with last month, at 1290 mg/dL. M-spike was 1.1 g/dL, compared with 1.0 last month, but it isn't very accurate and probably should have been 1.1 last month. Light chains wobbled a little but I never know what to think of them anyway. Dr YLH and I agreed that the myeloma remains stable after 70 28-day cycles. Myeloma Progression: I dread the day that my myeloma figures out how to defeat the Pomalyst. Every 28 days we check for problems, and I never really breathe easy until I get the numbers. So far, though, the Pomalyst (2 mg daily as a single age...
Source: Myeloma Hope - July 27, 2013 Category: Cancer Source Type: blogs

Mixed Results
Pomalyst Study Cycle 69 Thursday, June 27, 2013: M-Spike and IgG: IgG went up 21% in the last 28 days, from 1070 mg/dL last month to 1300 this month. M-spike comes in later but usually follows IgG closely, so I left Mayo for home assuming that the cancer markers, with an up-and-down history, were going up again. After the 90-minute drive home, though, I checked into Mayo Clinic on line and M-spike had a value of 1.0 g/dL (1000 mg/dL), unchanged from the previous cycle. How could that be? IgG is the sum of the "bad" IgG, the useless monoclonal proteins produced by the myeloma cells and measured by the M-spike,...
Source: Myeloma Hope - June 28, 2013 Category: Cancer Source Type: blogs

Very Bad Luck
Saturn Ion.  Their other car looks just the same. Our son and his sweet wife are enduring more than their share of tribulations lately, starting with her diagnosis of advanced ovarian cancer, then a house burglary on Easter Sunday, then the death of his grandfather (my Dad), and finally, on the very day of Dad's funeral, a lightning fire resulting in the total loss of their brand-new home. Living Room The local NBC station here, KARE 11, ran this story the day of the fire. Friends asked if they could help, so the beleaguered couple established a 'Fire Recovery Fund'. Please feel free to pass it on if you know of...
Source: Myeloma Hope - June 25, 2013 Category: Cancer Source Type: blogs

Grandma's Marathon Skipped
Saturday, June 22, 2013: I didn't run Grandma's after all. Our son's house was struck by lightning Friday morning and burst into flames, a total loss. We attended my Dad's funeral Friday and then went home to help our son and his wife. The house looks like this too. Thursday, June 20: 2 miles or so in the park, running with grandson, more or less. Tuesday, June 18: 2.5 miles in the park, tapering. Sunday, June 16: 3.6 miles in the park again, in 37:46. I ran/walked 20/20 this time, probably something like what I will do in the upcoming marathon. Maybe 30/30. Pace was 10:30, about a minute faster than I ac...
Source: Myeloma Hope - June 23, 2013 Category: Cancer Source Type: blogs

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New Era My dad died a few days ago, a wonderful gentleman, age 100, as sharp as anyone, still with more friends than most of us could ever hope to have. He was very handy and quite smart, and all his life he helped anyone who asked, with no expectation of a return.  He had ten visitors on the very day that he died. He was also my best fan, apart from my sweeties, always asking for the itinerary of our next marathon trip, wanting to know the results, and appreciating the occasional news story about his marathoner with myeloma. His loss leaves an emptiness for many people and for me especially. I love you Dad, go wi...
Source: Myeloma Hope - June 17, 2013 Category: Cancer Source Type: blogs

Record Snow at Mayo Clinic
Thursday, May 2, 2013: We Minnesotans thought we were done with snow for the season. Highway departments had even removed the plows from their big trucks, converting them for summer use. After all, Rochester, Minnesota's previous all-time record snowfall for the entire month of May was two inches. Last night and today, though, Rochester and Mayo Clinic got a foot. We saw the forecasts and drove from our home to Rochester yesterday afternoon before the storm, staying at a hotel. Today we did our medical business entirely indoors, using the clinic's warm, dry honeycomb of tunnels, returning home this afternoon when the stor...
Source: Myeloma Hope - May 4, 2013 Category: Cancer Source Type: blogs

Five Years on Pomalyst (Pomalidomide)
"Pomalyst" is a little easier to say and write than "pomalidomide," so I prefer it. Today was the end of the 65th 28-day cycle of the trial, and my myeloma is still stable. IgG and M-spike are up somewhat, but within the range of recent results and I believe this is a normal fluctuation. Further, and very important, a five-year-anniversary PET scan shows no lesions, not in the bones or anywhere else. In my book, as long as kidney function, blood counts, and calcium are normal, the PET scan is the best measure of the immediate level of actual injury from my myeloma. View from our front door two days a...
Source: Myeloma Hope - March 8, 2013 Category: Cancer Source Type: blogs

Pomalyst (Pomalidomide) Approved by FDA
Five years ago two different therapies had failed to stop my myeloma's upward climb, and finally a PET scan showed holes in my bones. This was Stage I disease, and time for a treatment that would actually work for me! I went on a trial of CC-4047 (later pomalidomide, now Pomalyst) with dexamethasone, then eventually Pomalyst alone. It brought my numbers down quickly, and now my myeloma remains stable, with an M-spike of about 1.1 mg/dL. More-recent PET scans and X-rays have not found holes in my bones. My family and I have enjoyed five free years, with a high quality of life. During that time I have been privileged to run...
Source: Myeloma Hope - February 8, 2013 Category: Cancer Tags: Pomalyst Source Type: blogs

Neutrophils Are Higher in the Afternoon
Maybe not for everyone, but they sure are for me. My doctors and I have known that for several years now, and for the Pomalyst (CC-4047, pomalidomide) study I have gone to a local clinic in the afternoon of the day before my appointment at Mayo Clinic. Doing it that way, my neutrophils have always been above the 1000/uL lower limit enforced by the study. Below that limit a patient might be in danger of neutropenic fever or other problems, so the treatment regimen must be discontinued until the neutrophils reassert themselves. It's not cheating to measure the neutrophils when they show highest, I'm told, because they are re...
Source: Myeloma Hope - February 8, 2013 Category: Cancer Tags: Pomalyst Source Type: blogs

Alive for Another Month
Thursday, January 10, 2013: Well, that title is a bit over-dramatic. But it is how I feel, every month when the results come in and the cancer is still stable. The study drug pomalidomide will doubtless stop working for me someday, but this month is in the bank. When (if) the drug fails there will be other drugs and some more months, but nothing can take away these wonderful, joyous months and years that it has given me. Pomalidomide Trial: Chicken, squash, broccoli, white and sweet spuds, mustard, all organic Today was the end of Cycle 63 of my participation in the study of pomalidomide. That drug has kept...
Source: Myeloma Hope - January 13, 2013 Category: Cancer Source Type: blogs