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.

The eight lethal cancers

Beth 1 June, 20097 June, 2009 10

A blog reader sent this to me, and I wanted to pass it on.

Hi Beth,

I follow your blog and thought you might be interested to know about a new initiative launched by a coalition of patient advocacy organizations during the American Society of Clinical Oncology (ASCO). Led by the International Myeloma Foundation (IMF), MDS Foundation and the Tackle Myeloma Foundation (TMF), they unveiled a patient “Statement of Principles” to address the inequalities in reimbursement of cancer therapies.

Currently, Medicare and private insurance companies require higher deductibles and co-payments for oral drugs than for IV therapies and inpatient procedures. However, private insurance is regulated at the state level and Oregon, Indiana and Iowa have laws requiring equal coverage with similar legislation pending in several additional states and federal legislation introduced in Congress.

If you’re interested in learning more or signing the petition, you can check out the IMF or MDSF websites.

Best,
Allison

If you go to the IMF’s web site, you can read more about the Cancer Patient Statement of Principles. This was taken from their web site.

About the eight lethal cancers
Eight forms of cancer, of which multiple myeloma is one, are projected to cause 49% of the 562,340* cancer deaths projected in 2009. For each of these forms of cancer, at least half of the patients diagnosed will die from their cancer within five years. Those cancers are:

Type of cancer	Deaths projected in 2009	New diagnoses projected in 2009	5-year survival rate
Brain cancer	12,920	22,070	35%
Pancreatic cancer	35,240	42,470	5%
Esophageal cancer	14,350	16,470	16%
Liver cancer	18,160	22,620	10%
Lung cancer	159,390	219,440	15%
Multiple myeloma	10,580	20,580	34%
Ovarian cancer	14,600	21,550	45%
Stomach cancer	10,620	21,130	24%

*Source: Cancer Facts & Figures 2009, American Cancer Society, Atlanta. 2009

Click here to support the Cancer Patient Statement of Principles.

Categories ASCO, Myeloma, Myeloma Treatment Tags ASCO, Cancer Patient Statement of Principles, IMF, MDS, multiple myeloma, Myeloma, TMF

Duke Lemur Center / Bone Marrow Transplant Clinic today

Beth 1 June, 2009 5

Monica and I got to go to the Duke Lemur Center in Durham, NC today for business. It was great! I took some pictures through the fences with my iPhone camera, and this was the best of them. I’m afraid I can’t tell you what type of lemur this is, but I’ll find out.

Just before the meeting at the Lemur Center, I had a checkup at the Bone Marrow Transplant Clinic. I’ll have the results of my tests on Wednesday. It’s been almost two years since I had a skeletal survey, so I scheduled that for September. The skeletal survey is a series of xrays of the long bones, skull and ribs and spine. I asked about a recent report I read that suggests that PET scans should be used for monitoring myeloma. My doctor does those if there’s activity such as an increasing m-spike and nothing shows up on xrays. The PET can show plasmacytomas and other activity.

I’ve been told that standard radiographs aren’t much good at detecting bone damage until there’s been a significant amount of destruction, so it’s not a good early warning indicator. I’d like to have a PET scan just to see what’s lurking. I know they’re expensive. A few years ago I called around to get the costs at various places because I wanted one, but was told by my insurance company that they weren’t covered for myeloma. At the time, the cheapest PET scan I could find was about $3,000.

Did you know you can do that? If you’re not insured, or your coverage isn’t very good, call around to see who has the best deals on tests or procedures. The costs can vary quite significantly between institutions. Another money-saving tactic is to find out what’s covered under what setting. For example, my insurance has me pay 20% of services performed in hospitals. That’s why I have most of my chemo and all of my Zometa infused at a nearby doctor’s office. When I do that, it’s just a $30 copay. Investigate all of your options!

Categories Duke, Durham, Myeloma Tags Bone Marrow Transplant Clinic, chemo, Duke Lemur Center, Lemur, PET Scan, skeletal survey, zometa

Oral mucositis caused by your myeloma treatment

Beth 20 May, 20096 May, 2017 3

I was told about about a research project that’s underway. I have no affiliation with the group, so please do your due diligence. If you participate, let us know how it went.

We are currently looking for people that have suffered “oral mucositis” (mouth inflammation or sores) as a result of cancer treatment to participate in 45 min telephone interviews.

The purpose of this research is to understand what does or does not work as treatment for this condition.

The interviews can be scheduled this week and next and participants receive $100.

Please respond with interest to contacts below. If this is not you, please refer or post for others that may have interest.

Kind Regards

Jan Mallery-Groom RN
Clinical Project Manager
+510-922-9710
recruitingresourcesllc.com

Categories Cancer, Duke, Myeloma Treatment, Southern Pines Tags cancer treatment, multiple myeloma, Myeloma Treatment, oral mucositis

Possible link between formaldehyde exposure and myeloma

Beth 18 May, 20097 June, 2009 0

According to a recent article published in the Journal of the National Cancer Institute Advance Access published online on May 12, 2009, it looks as though exposure to formaldehyde could raise one’s risk of lymphohematopoietic malignancies (blood and lymph cancers).

For an extremely statistical look, read the abstract -> http://jnci.oxfordjournals.org/cgi/content/abstract/djp096

I had some exposure to formaldehyde during my twenties. Nobody can say for sure if that was the risk factor for me though. I worked around plastics. A certain type of plastic, called high density polyethylene, gives off fumes that contain formaldehyde when it’s heated to a high temperature. We stood around at a factory with melting HDPE around us all the time.

Categories Cancer, Myeloma Tags formaldehyde, lymphohematopoietic malignancies, multiple myeloma, Myeloma

More backyard wildlife

Beth 17 May, 200926 May, 2013 5

I found this spider clinging to the side of the pool today, so I got the net and fished it out. I tapped it out onto the lawn. At the time, I didn’t realize her bumpy back looked that way because she was carrying baby spiders. I’ve been told this is a wolf spider. I only had my iPhone with me instead of a proper camera, so the image is a little bit fuzzy.

Mother spider with baby spiders on her back

Southern Pines, NC back yard wild life! If you have pictures of North Carolina spiders to share, let me know!

Categories Southern Pines Tags NC, North Carolina, Southern Pines, wolf spider babies

Snake in the grass

Beth 5 May, 20095 May, 2009 3

This is a snake that was in my yard in Southern Pines just a little while ago. I usually find snakes in my pool a few times a year, but I’ve never seen one in the grass. I’d say it’s close to 2 feet long. It’s black with a white underside. Creepy!

Snake Southern Pines NC back yard

Categories Southern Pines Tags grass, NC, pool, snakes, Southern Pines, yard

Froggies!

Beth 3 May, 20096 May, 2017 2

A few days ago, the tadpoles who made their home in the water that collected on my pool cover developed into tiny frogs or toads. I’m still not sure what they are. I took a short video on my camera of them hopping around on the pool cover. Since then, they’ve almost all hopped away. I can see some in the yard if I look carefully. There are just a few tadpoles left, but they’ve almost lost their tails and have legs now.

Categories Southern Pines Tags frogs, tadpoles, toads

Flashing lights

Beth 23 April, 200923 April, 2009 0

Southern Pines Police car flashing lights This evening was the second of eight sessions of this year’s Southern Pines Police Citizens Police Academy. If your community’s police department has a program like this, I encourage you to get involved. It doesn’t seem like eight weeks is enough time to learn all there is to know.

During the first session, we had an introduction to the department and its functions given by Chief John Letteney, Community Services Coordinator, Bob Temme and the department’s chaplain.

Today’s lecture and demonstrations were conducted by Sgt Austin, who described the functions and responsibilities of the patrol division. We got to tour the department offices and take a look at some of the equipment used in patrol cars.

We talked a lot about impaired drivers and the methods used to determine the level of impairment by officers on patrol. Can you believe that there are people who think they can alter the results of breath alcohol detection instruments by putting a penny in their mouths? Weird, I know. I said I think we should start a rumor that putting a cat turd in your mouth will cause a negative reading. I’d love to imagine drunk drivers sucking on cat turds when they get pulled over. We laugh when we hear the stories about how impaired drivers bumble through field sobriety tests, but there’s really nothing funny about it. Drunk drivers are potential killers who have no care for the safety and well-being of others. I barely remember him, but my uncle was killed by a drunk driver.

Next week I’ll have some more pictures!

Categories Life, Southern Pines Tags drunk driving, police, pulled over, Southern Pines Police, speeding, traffic stop