2021-10-31 21:38
Still doing pretty well. I'm currently taking Darzalex monthly, Pomalyst 2 mg daily (28 days of 28), and dexamethasone (Dex) 8 mg weekly. Monthly blood tests don't normally show any cause fo… Read More
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Minnesota Don discusses treatments for multiple myeloma and his own experiences with them.
2019-12-18 03:18
Not even close, doing pretty well actually, though I should post more often. I was diagnosed with myeloma in July, 2003, and according to my math that's well over 16 years ago. My family and… Read More
2019-08-01 03:20
Blogging again.
June 26, 2019.
After a lovely, easy, three-year ride on a two-drug myeloma
regimen, my right shoulder was hurting and a PET scan showed a lesion (a
collection of myeloma cell… Read More
2017-09-18 02:37
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 a… Read More
2016-11-13 03:12
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… Read More
2016-11-03 23:39
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… Read More
2016-08-20 00:38
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 resul… Read More
2016-06-26 00:37
June 22, 2016Bright 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… Read More
2016-06-12 21:26
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, ar… Read More
2016-05-30 01:10
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 Dar… Read More
2016-05-10 21:12
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 rece… Read More
2016-05-03 22:24
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… Read More
2016-04-27 02:30
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. This spectacular result brings IgG to… Read More
2016-04-26 18:19
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 m… Read More
2016-04-26 03:08
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. &n&hell…Read More
2016-04-24 02:31
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'… Read More
2016-04-07 14:49
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… Read More
2016-04-05 22:34
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 h… Read More
2016-03-18 00:43
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… Read More
2016-03-10 17:45
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/… Read More
2016-03-04 04:00
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 whe… Read More
2016-02-26 20:16
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… Read More
2016-02-24 20:52
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. &n&hell…Read More
2016-02-21 02:38
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. &nbs&hell…Read More
2016-02-19 03:15
Thursday, February 18, 2016:
I had a nice 8-mile walk/run on Monday, February 8. Then Tuesday night I had back pain that kept me from sleeping well. Wednesday I visited Mayo Clin… Read More
2016-02-12 17:38
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 vertebr… Read More
2016-02-11 17:08
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… Read More
2016-02-04 22:13
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.  &hell…Read More
2016-01-18 16:59
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… Read More
2015-12-31 18:30
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 we… Read More
2015-12-11 19:11
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 qualifica… Read More
2015-10-14 15:01
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… Read More
2015-09-25 13:26
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 t… Read More
2015-09-25 13:08
End of Cycle 5 of the current study medication.
For me this study started in April, and as of two weeks ago I seem to have have little to show for it. That's why I am not identifying… Read More
2015-09-24 20:50
Wednesday, September 23, 2015: This morning I did a 4-mile walk/run, walking as fast as I could and occasionally running for 20 seconds or so, average pace around 13 min/mi.In the… Read More
2015-06-23 14:43
Tuesday, June 16, 2015:
I have been on a trial of a new oral regimen for two months now, and I am a little disappointed to report that there is no significant change in my numbers. M… Read More
2015-05-20 21:50
Tuesday, May 19, 2015:
For most of the last seven years on the previous regimen I was happy when the results at the end of a cycle were the same as the results of the previous cycle. "… Read More
2015-05-11 20:11
The trial specifies treatment doses on days 1, 8, and 15 of each 28-day cycle, the oral Primary drug plus dexamethasone (Dex) 40 mg. I have taken all of those pills, and today is the s… Read More
2015-04-27 21:09
Wahoo!
Good CBC. As part of my new myeloma regimen, we do a CBC with differential at the end of each of the first three weeks, just before taking the next dose of the Primary Drug. &nb&hell…Read More
2015-04-24 02:23
I'm now on a study of a new drug (Primary drug), along with dexamethasone (Dex). I take both once per week for three weeks, then one week off from the Primary drug, then repeat that cy… Read More
2015-04-21 22:48
After seven years my myeloma has finally made an end run around my dear friend Pomalyst and found a way to hurt me. The previous post shows the PET scan of the hot little lesion t… Read More
2015-04-11 14:27
I started on a trial of Pomalyst seven years ago, 92 cycles ago, starting with CC-4047 (now Pomalyst) and dexamethasone (DEX) but most of the time taking 2 mg of Pomalyst daily as a single a… Read More
2015-04-05 22:27
The Leukemia & Lymphoma Society (LLS) combats all blood cancers, including myeloma, supporting research as well as the patients themselves. Every year the LLS holds a Woman (and M… Read More
2015-03-12 03:03
That's what they call it. For the first time in 92 cycles of Pomalyst, we three did not drive the 200-mile round trip from home to Mayo Clinic and back. Instead we agreed with Ma… Read More
2015-02-24 21:59
This is a victory for myeloma patients, and perhaps for all patients facing a life-threatening disease.
Farydak (panobinostat) is a new oral drug approved specifically for use with bortezomi… Read More
2015-02-15 01:05
But I'm still on Pomalyst, 2 mg daily with no days off, thanks to insurance.
Somewhat to our surprise, Mayo Clinic abruptly cancelled my participation in the study at the visit which ended… Read More
2014-12-09 18:17
ASH Monday, December 8, 2014
Yi Lisa Hwa, DNP, Mayo Clinic in Rochester, MN, noticed that one of her patients MM numbers improved when she prescribed the beta blocker propanolol. So she too… Read More
2014-12-09 17:28
ASH Monday December 8, 2014
Dr M Q Lacy, of the Mayo Clinic in Rochester, MN, presented the results of a small phase I/II study of Pomalyst with Velcade and dexamethasone (PVD) for 42 patien… Read More
2014-12-09 01:30
Revlimid Does Not Increase the Risk of Second Primary Cancers for Newly-Diagnosed Patients
I know patients who say that their doctor would not recommend Revlimid for them because the doctor… Read More
2014-12-08 20:57
The High Cost of Innovation
ASH is the American Society of Hematology (Hematology.org), and its annual meeting is the ASH Conference, or just ASH. This year ASH is in San Francisco, and we… Read More
2014-12-07 20:56
In recent weeks I have been approached by some people (well, at least two) who are concerned that I have not posted on this blog since August, wondering if something is wrong. Nope - everyt… Read More
2014-08-03 02:44
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 pn… Read More
2014-08-02 02:06
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 h… Read More
2006-06-07 11:16
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… Read More
2006-06-07 11:16
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 Ma… Read More
2006-06-07 11:16
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 radiolog… Read More
2006-06-07 11:16
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 s… Read More
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