More Coming
2019 July 31 I'll be posting again here soon. Don (Source: Myeloma Hope)
Source: Myeloma Hope - July 31, 2019 Category: Cancer & Oncology Source Type: blogs

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. &...
Source: Myeloma Hope - September 18, 2017 Category: Cancer & Oncology Tags: acid reflux daratumumab Darzalex GERD PET scan pomalidomide Pomalyst thyroid Source Type: blogs

PET Scan Looks Good
Before I started the current regimen, a PET scan last April 9 displayed five different lytic lesions, three of them in the spine. Last Wednesday's PET scan showed that all five lesions are significantly decreased, and most are gone. One isn't even mentioned.This is excellent news. We knew that my M-Spike and IgG were down to about 40% of their April values, but that doesn't guarantee freedom from bone damage. With these PET results, we can be pretty sure that no damage is occurring. As we looked at the PET images together, Dr WG showed me a small chunk missing from a vertebra - looked like about BB...
Source: Myeloma Hope - November 13, 2016 Category: Cancer & Oncology Tags: daratumumab Darzalex DEX dexamethasone lesion PET scan pomalidomide Pomalyst vertebra Source Type: blogs

How to Cure a Cold
They say there's no cure. And " they " may be right, but there are a lot of things that we can do. Heard from doctors fairly recently (but note: I am not a doctor):Gargle with warm salt water to sooth and treat the throat.Use a neti pot (nasal irrigation) to clear sinuses.Take Claritin (loratadine) and Claritin-D (loratadine with pseudoephedrine) to reduce symptoms. Other common-sense and folk treatments:Keep extra warm, particularly the chest. Especially avoid getting chilled.Get lots of sleep - morning and afternoon naps if possible. In my opinion this is the best thing we can do.Chicken soup wit...
Source: Myeloma Hope - November 4, 2016 Category: Cancer & Oncology Source Type: blogs

All Good News
Friday, August 19, 2016: Wednesday I brought a Mayo Clinic blood draw " kit " to the local clinic, where they drew the blood and shipped it overnight back to Mayo. Last evening the results showed up on Mayo's patient portal, and I'm happy! Since early April my treatment regimen has been 2 mg of Pomalyst every day, with infusions of Darzalex every week and then every other week, currently with 12 mg of dexamethasone (DEX) on the weeks between Darzalex infusions. During that time my IgG and M-Spike dropped about 20% per month until a month ago, then leveled off. Wednesday's results confirmed that IgG and ...
Source: Myeloma Hope - August 20, 2016 Category: Cancer & Oncology Tags: acid reflux angina colonoscopy daratumumab Darzalex DEX dexamethasone IgG M-Spike myeloma Pomalyst Source Type: blogs

Bright Sun and Clouds
June 22, 2016 Bright Sun: After the 10th Darzalex infusion, with daily 2 mg Pomalyst and weekly dexamethasone (DEX), IgG is down once again, from 644 to 515 mg/dL, another drop of 20%.  M-spike is down too, by a similar ratio, from 0.6 to 0.5 g/dL.  Both myeloma markers are now at a level never seen in my 13 years since diagnosis, and apparently continuing down.  It probably means that the actual count of myeloma cells in my bones is declining by roughly the same ratio, a very hopeful thought. Clouds: HEMOGLOBIN: For the first time in years my hemoglobin is down a little, at 13.2 g/dL, where it is nor...
Source: Myeloma Hope - June 26, 2016 Category: Cancer & Oncology Tags: angina daratumumab Darzalex heartburn pomalidomide Pomalyst Source Type: blogs

Review of ICER Report on Treatment Options for Multiple Myeloma
Who is ICER? ICER is the Institute for Clinical and Economic Review.  As far as I can tell, it is funded primarily by insurance companies and by nonprofit organizations who, in turn, are funded by insurance companies.  They claim some funding by the federal government as well.  Other members include pharmaceutical companies who apparently participate in order to have some voice in ICER's proceedings.  A quick Google search shows that the title of many of ICER's documents is "Building Trust through Rationing," which I believe is their mantra and suggests that rationing health care is their rea...
Source: Myeloma Hope - June 12, 2016 Category: Cancer & Oncology Tags: ICER myeloma report Source Type: blogs

Yellow Roses
Wednesday, May 25, 2016: My sweeties and I bought a nice bouquet of yellow roses to celebrate my latest treatment results.  In the last four weeks on Pomalyst (pomalidomide)(POM) and Darzalex (daratumumab)(DARA) my IgG has dropped 20% from 807 to 644 mg/dL, and M-spike 25% from 0.8 to 0.6 g/dL.  These numbers are the lowest that I have seen in my 13 years with myeloma. Not all of that progress comes in the last four weeks, of course.  Here is a chronology of treatments and results since January, 2016: Wed Feb 17 First Zometa infusion, serious reaction to something, likely the Zometa (not relevant to thes...
Source: Myeloma Hope - May 30, 2016 Category: Cancer & Oncology Tags: daratumumab Darzalex DEX dexamethasone IgG immunoglobulins M-Spike pomalidomide Pomalyst Source Type: blogs

Pomalyst, Darzalex, and Corticosteroids
Weekly Infusion Number 6:  Blood draw, doctor visit, pre-medications, and Darzalex, about 6 hours total. I took 20 mg dexamethasone last night, as part of the Pomalyst regimen, and received 100 mg of prednisone IV before the Darzalex, as part of that regimen. As before no problems, no infusion reactions.  This is getting boring. Boring is good.  I love boring. (Source: Myeloma Hope)
Source: Myeloma Hope - May 10, 2016 Category: Cancer & Oncology Tags: corticosteroids daratumumab Darzalex dexamethasone pomalidomide Pomalyst prednisone Source Type: blogs

Infusion Number Five
And the Orange County Marathon in California last Sunday, my 95th since diagnosis,  Whooee - still on track for 100 marathons this year. This was also the third weekly Darzalex infusion at our local hospital.  Arriving at the infusion center at 7:45 am, I left at 2:45 pm, total seven hours.  That includes a blood draw for a CBC and metabolic panel, a visit with the doctor, the pre-medications (Tylenol, Benadryl, and prednisone), and finally the Darzalex itself. No issues.  In particular, I have never had any kind of infusion reaction from Darzalex.  Apparently that makes me a lucky myelomiac, bec...
Source: Myeloma Hope - May 4, 2016 Category: Cancer & Oncology Tags: daratumumab Darzalex Source Type: blogs

Stunning Myeloma Marker Results
In the three weeks of this new three-drug regimen, Pomalyst, Darzalex, and dexamethasone (DEX), IgG has dropped 39%, from 1330 mg/dL to 807 mg/dL, in tests done by Mayo Clinic.  This spectacular result brings IgG to the lowest level I have seen since my diagnosis in 2003.  To confirm that result M-Spike dropped 33%, from 1.2 to 0.8 g/dL, also the lowest value since 2003, when it was measured once at 0.52 g/dL. This appears to be a spectacularly good omen, but a few things temper my enthusiasm just a little: 1. Three weeks ago, at the beginning of the new regimen, my blood also contained about a half dose of a d...
Source: Myeloma Hope - April 27, 2016 Category: Cancer & Oncology Tags: Darzalex dexamethasone Pomalyst Source Type: blogs

Neutrophils 3700
I was guessing 1700 / uL, with a little false bravado, actually just hoping they would be over 1000, so I was shocked to see the smiling nurse with the printout showing 3700, nine times as many as yesterday's count of 400.  Yesterday the doctor and nurses were concerned about neutropenia, asking me how I felt.  Based on prior experience, however, I believed that the neutrophils were there all along, just not measurable for some reason.  After a good night's sleep they have to be teased out of hiding, or out of some other phase, or whatever neutrophils do. Note: I am not a doctor - what happens to neutrophi...
Source: Myeloma Hope - April 26, 2016 Category: Cancer & Oncology Tags: neutropenia neutrophils Source Type: blogs

Where Oh Where Have My Neutrophils Gone?
In advance of tomorrow's planned fourth Darzalex infusion, the doctors did a CBC with differential today to see how my neutrophils were standing up to the Darzalex / Pomalyst combination.  Surprise!  Neutrophils were just 400/uL, where the reference range for this lab is 1800 to 7700 /uL. In other words, my neutrophils measured less than one fourth of the value representing the very bottom of the reference range - the lowest count that I remember in almost 13 years with myeloma.  Doctors and nurses were all asking if I felt OK, because a low neutrophil count (neutropenia) can result in neutropenic fever, p...
Source: Myeloma Hope - April 26, 2016 Category: Cancer & Oncology Tags: neutropenia neutrophils Source Type: blogs

Three Infusions
Two at Mayo Clinic, and now the third at a highly-rated local hospital.  We have made twelve 200-mile round trips to Mayo in Rochester so far just this year, almost one per week, and I'm tired of the drive.  Of course I'll do whatever it takes to stay alive, and Mayo is indeed a world-class center for myeloma treatment, so that sounds like whining.  However, if the drive is not necessary, it is certainly more convenient (and safer) to have procedures like blood draws and even infusions done barely a 10-minute drive from home.  My current Darzalex (daratumumab) regimen calls for weekly infusions for eigh...
Source: Myeloma Hope - April 24, 2016 Category: Cancer & Oncology Tags: Darzalex infusion Source Type: blogs

Pomalyst and Darzalex
Darzalex (daratumumab) is a potent myeloma treatment by itself, but even more so when combined with Pomalyst (pomalidomide), and that is what my Dr WG wants me to have now.  I couldn't agree more.  Two studies that have benefited other people have failed for me, one after the other, and my IgG and M-Spike have increased.  Far worse, my most recent PET/CT shows five lesions in my bones including three scary ones in the spine, so it's time to bring out the big guns. I've been taking Pomalyst again now for a month, 2 mg every day, with dexamethasone (DEX) 40 mg weekly, waiting for the drugs from the most-recen...
Source: Myeloma Hope - April 7, 2016 Category: Cancer & Oncology Tags: Darzalex infusion Source Type: blogs

Better DEX Experience
Three weeks ago I whined mightily about taking DEX.  The worst problem was acid reflux the second night after taking it, but there were other issues too.  I'm happy to say that I have had better experiences since then. Acid reflux: Lots of good people offered great suggestions regarding the heartburn (acid reflux).  This formula has worked for three weeks in a row.  After the worst heartburn of my life, now zero heartburn: I take the 40 mg of DEX with food at the Sunday evening meal, and the reflux happens (happened) Monday night. No food at all in the last few hours before going to bed Monday night...
Source: Myeloma Hope - April 6, 2016 Category: Cancer & Oncology Tags: acid reflux DEX dexamethasone GERD hearatburn Source Type: blogs

Whining About DEX
Dexamethasone (DEX) is a part of many myeloma regimens - my doctor says "everything works better with DEX."  I've taken it before, and not liked it then, but this most recent experience is something new indeed. Sunday night I took the "usual" 40 mg dose, ten little 4 mg tablets, at bedtime.  In the past this has worked OK for me because the DEX doesn't interfere with my sleep that first night.  And it didn't interfere Sunday night, I slept well.  Monday, then, was "DEX day," full of energy, as if 200% caffeinated all day.  I got a lot done, including an energetic 4-mi...
Source: Myeloma Hope - March 18, 2016 Category: Cancer & Oncology Tags: acid reflux DEX dexamethasone GERD hearatburn Source Type: blogs

The Study Is Over
For me.  Sad to say, because this treatment was the easiest I've ever been on, and it has worked well for other people (with other blood cancers).  Yesterday's blood tests and PET/CT show progression of the myeloma, however, and after 13 weeks (a quarter of a year!) it certainly should be heading the other way. According to Dr WG the PET/CT does not show any new lesions in my bones, which probably means that the study treatment was doing some good.  However, it does show increased activity in the existing lesions.  For a while we wondered if that increasing activity was "flare," caused by my ...
Source: Myeloma Hope - March 10, 2016 Category: Cancer & Oncology Source Type: blogs

No More DEX
For over a week I had to take a little dexamethasone (DEX) now and then to manage a severe pain in my back and lower right abdomen.  I don't know for sure why the DEX fixed the pain when Vicodin didn't, but it was magic.  DEX is a powerful anti-inflammatory, so my theory is that something was inflamed and pressing on the spinal cord, and the DEX reduced that inflammation. If that's what happened, I don't know why the inflammation showed up, or why it went away.  I haven't taken any DEX for three full days now, and I'm glad to be off DEX because it can have serious side effects from long term use.  I ma...
Source: Myeloma Hope - March 4, 2016 Category: Cancer & Oncology Source Type: blogs

DEX is OK
My doctors have now told me that a little DEX to manage the pain is OK on the current medication study.  DEX can also have a treatment benefit, in addition to pain relief, and I suspect that the study authors are at least slightly interested in that result too.  My daily medication log will now include the DEX, if any, and the dosage. It's working quite well - one 4-mg tab of DEX seems to last at least 30 hours before the pain returns.  I've had three tabs so far, with a fourth due today if needed. My main doctor at Mayo would also like me to come there (180 mile round trip) for another scan.  In emai...
Source: Myeloma Hope - February 26, 2016 Category: Cancer & Oncology Source Type: blogs

Adventure In Pain
Lots has happened since my last post, and this is a record of those events.  I have to write it somewhere.  It's interesting to me, part of the journey, but you'll be the judge.  It's mostly whining. Background for the reader:  Last Wednesday I had an infusion of a study drug and an infusion of Zometa, and also began a week of oral Valtrex in case my back pain might be the prodrome for shingles.  By Friday the pain in my back and abdomen was much more pronounced, continuing into Saturday.  I posted about that here. Saturday, February 20, 2016: I have a new respect for people who are obliged...
Source: Myeloma Hope - February 24, 2016 Category: Cancer & Oncology Tags: DEX dexamethasone kidney pain Source Type: blogs

Lots More Whining
Just can't get enough of it! Last Wednesday's visit to Mayo Clinic marked the end of the every-week 200-mile round trips, but the results didn't shed much light on my medical condition.  Is the "flare" in my vertebrae due to the myeloma itself, or is it inflammation caused by my immune system attacking the myeloma?  We're hoping for the latter, of course, and sticking with the current medication study, but this does require more than a little faith. Here is the whining:   Last night I was quite uncomfortable for much of the night.  The neuropathic pain on the right side of my back beca...
Source: Myeloma Hope - February 20, 2016 Category: Cancer & Oncology Source Type: blogs

Some News Might be Good News
Tuesday night I felt a little back pain while in bed, unusual for me.  As it happened, we had already scheduled an MRI at Mayo Clinic for the very next day to look at the nearby vertebrae, numbers T5, T9, and T11, and compare that with MRI images from last October.  Doctor WG called last night to talk about those results: Neither the doctor nor the the radiologist can see any significant damage to the bones of those vertebrae.  That is very good news. However, we still don't know for sure whether the PET scan hot spots are due to increased tumor burden or to inflammation ("flare") caused by my ow...
Source: Myeloma Hope - February 12, 2016 Category: Cancer & Oncology Source Type: blogs

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