Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

Crop Circle

Did I ever mention that I once saw a crop circle? No? I did! I was in England, in Wiltshire, near Avebury. We were checking out the West Kennet long barrow near Silbury Hill and saw the crop circle. I believe they’re made by people, of course, and not aliens. It was a beautiful sight, but not more interesting than the long barrow or the stones at Avebury. Wiltshire is just beautiful, if you ask me. In fact, the whole country is beautiful. That was one place I didn’t want to come home from. Imagine (Americans) driving down a country road (on the wrong side) and seeing a castle! We just don’t have many things like that here. Check out this site for more information.

If you’re a little insulted that I’m overawed by the accomplishments of my English ancestors, check out this amazing structure. It was created by native Americans more than 3000 years ago. I visited there as a child, and felt it was a magical place.

Trigger to myeloma relapse may be found

The title sounds very encouraging, but I was hoping for more detailed information in the article. If anyone has the complete report, I’d be interested in reading it.

I’m quoting the entire article below, in case the location changes, but here’s the URL:

http://www.upi.com/ConsumerHealthDaily/view.php?StoryID=20051223-113103-7425r

NEW YORK, Dec. 23 (UPI) — Weill Medical College of Cornell University researchers in New York think they found the mechanism that triggers relapse in patients with multiple myeloma.

While available drugs can push the disease into temporary remission, fatal, uncontrolled cell division always re-emerges over time, and until now, the cellular mechanism driving this relapse has remained unclear, according senior researcher Dr. Selina Chen-Kiang, professor of Microbiology and Immunology at Weill Cornell Medical College.

Multiple myeloma originates deep in the bone marrow and is the second most common blood cancer. The disease is always fatal, with an average life expectancy after diagnosis of just three years.

“There are drugs that are geared to getting people into remission, but they ultimately fail because there are still cancer cells that have the potential for self-renewal — they’ll rise again and start dividing,” says Chen-Kiang.

The findings were presented at the annual meeting of the American Society of Hematology and published in Cancer Research.

Recent labs

Normally I put all the lab results in a table, but I’m feeling lazy today. My IgA has not gone up in a few months. Could this mean I’m stable? Do I need to hold off on treatment until my IgA goes up? My CBCs are all normal.

TEST	RESULT	UNITS		LIMITS
WBC	5.9	x10E3/uL		4.0 - 10.5
RBC	4.07	x10E6/uL		3.80 - 5.10
HGB	12.0	g/dL		11.5 - 15.0
HCT	35.1	%		34.00  -44.00
PLT	288	x10E3/uL		140 - 415
ANC	3.1	x10E3/uL		1.8 - 7.8
IgG	259	mg/dL		700 - 1600
IgA	2445	mg/dL		70 - 400
IgM	<6	mg/dL		40 - 230			

Better

My liver function has improved since the last test a few weeks ago, and I’ll be able to start the rev/dex trial. That’s if the other tests are ok. I’ve had plenty of EKGs in the last few months, so I’m sure my heart is fine. My appointment with one of the docs in Charlotte is for 2:30 PM on January 3rd. I’m looking forward to starting, but dreading it at the same time. If you’ve ever done high dose dex, you know exactly how I’m feeling.

Liver

At this time, I don’t qualify for the rev/dex trial because my liver function tests are abnormal beyond the allowed range. This morning I went to my local Dr. to have a retest done. It’s been a few weeks since my last test. My liver function was normal before I began the CNTO 328 trial, and then became elevated almost immediately. I think the levels are beyond 5x normal at this point. It’s been about 5 weeks since I last had an infusion, so I’m hoping there’s been some recovery. I’m also having my IgA checked so I can know if I can afford to wait for my liver to recover before I start another treatment.

Happy on Revlimid!

I managed to get onto the Revlimid trial with Decamethasone and this has been the BEST thing that has happened to me in 2 years (since my stem cell transplant)! After Velcade and then a very small special trial my monoclonal protein numbers took right off into the stratosphere! I was very worried. Then within 2 weeks of Revlimid they dropped in HALF! Yes 50%. Two weeks later they halved again! M count was down to less than 15 two weeks ago! I pray that this trend continues and that some maintenance diet will hold it at or close to zero soon. Aspirins seem to be a safe counter to the clotting worry – and given my choices, I am NOT worried about a clot given the gift this drug has given so far! What a fine Christmas gift! I only hope it works for all fellow Myelomians! The thought of Revlimid trial staying suspended is scary. Have not heard what the latest is from Celgene, FDA or anywhere else. Does anyone know what’s the current state?

Trial

I faxed my consent form to the cancer center in Charlotte, NC that’s doing the EAP trial for rev/dex. I hope to hear from them soon about it. They said I can have all my tests done here by my local doctor, and would only have to go see them to get my drug supply. That sounded wonderful. I was in a trial in which I was having to drive to UNC about once a week for either an infusion or labs. It was getting stressful for me and I got to a point where I didn’t want to go at all. I suppose if the drug had been working for me, I would have looked forward to going. The hour (plus) drive was just too much. I was spending too much time away from things. I need to get back to my life.

Revlimid and dex might be the next step

Since I feel that the CNTO 328 trial is not working for me, I’ve been thinking about my next treatment step. I’m almost 100% sure that I want to enroll in the Multicenter, Open-Label, Single-Arm, Expanded Access Program For Lenalidomide Plus Dexamethasone In Previously Treated Subjects With Multiple Myeloma. It involves high dose dex, which isn’t very appealing to me. I’d have to take the dex at 40 mg a day for 4 days, with 4 days off, over a period of 16 weeks. That would be the longest I’ve ever been on high dose dex. Revlimid is supposed to be 50 to 100 times stronger than Thalomid, which I took back in 2003. Thalomid worked for me. I think it may have been more the dex though. My response slowed down after I went to just 40 mg dex a week. One thing I’m concerned about is that my MM seemed to have become resistant to dex. Will the high dose dex do more harm than good?

I just know that I need to choose another treatment. I’m weary of having to go for IV treatments, so the pills seem very convenient. I’m tired of being poked. It seems my veins are too. Each time I go, there are multiple attempts to get an IV going. I have one good vein on my left hand, and it has its scars.