Category: Myeloma

Myeloma

Duke Lemur Center / Bone Marrow Transplant Clinic today

Duke Lemur CenterMonica 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!

Possible link between formaldehyde exposure and myeloma

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.

My Uncle and www.MyelomaForums.com

All,

My uncle Darryl Ramsey was recently diagnosed with Stage 3 Multiple Myeloma and was told that he has aprox 1 year to live.  However, my uncle feels that Chemo and Radation are a waste of time because he now knows he has been sick with Multiple Myeloma for over 10 years and thinks he is still here today because of the fact that he was the type of person to refuse going to doctors and he for years started jucing and eating better every day.  Like most people the first thing my uncle did was a Google search and he found nothing but grimm information.  I started www.myelomaforums.com because I wanted him and others like him to have access to information from other people so that him and others like him know about all the best treatments and have access to all the answers.  However, the hardest part of getting a sucessful forum started is getting people and content.  I am here to ask everyone to please sign up with www.myelomaforums.com as well because the more your stories are out there the more people we can help.

Thanks,

Andy

P.S. Beth your’re a sweetheart and thanks for the kind email and willingness to help.

RSS Feed aggregator for myeloma blogs

I’m putting my links to blogs into a feed aggregator. If your blog has an RSS feed and you’d like to have it on the list, let me know. Just us the contact form.  Don’t forget to tell me what the URL for your valid RSS feed is.

http://www.myelomablogs.org/?type=archive

If you don’t have a blog or an RSS feed, why not set up one at healthblogs.org?

Find out what others are doing: myeloma treatment, chemo, coping

Green tea polyphenols block the anticancer effects of bortezomib and other boronic acid-based proteasome inhibitors

This caught my eye because I’ve been on Velcade before and never gave a second thought to whether or not I should not be consuming green tea/green tea products.

Blood First Edition Paper, prepublished online February 3, 2009; DOI 10.1182/blood-2008-07-171389.

Submitted July 28, 2008
Accepted January 12, 2009

Encouse B. Golden, Philip Y. Lam, Adel Kardosh, Kevin J. Gaffney, Enrique Cadenas, Stan G. Louie, Nicos A. Petasis, Thomas C. Chen, and Axel H. Schonthal*

Department of Pathology, University of Southern California (USC) Keck School of Medicine (KSOM), Los Angeles, CA, United States
Department of Molecular Pharmacology and Toxicology, USC School of Pharmacy (SoP), Los Angeles, CA, United States
Department of Molecular Microbiology and Immunology, USC KSOM, Los Angeles, CA, United States
Department of Chemistry, USC College of Letters, Arts and Sciences, Los Angeles, CA, United States
Department of Clinical Pharmacy and Pharmaceutical Economics and Policy, USC SoP, Los Angeles, CA, United States
Department of Neurosurgery, USC KSOM, Los Angeles, CA, United States

* Corresponding author; email: schontha@usc.edu.

The anticancer potency of green tea and its individual components is being intensely investigated, and some cancer patients already self-medicate with this ‘miracle herb’ in hopes of augmenting the anticancer outcome of their chemotherapy. Bortezomib (Velcade®) is a proteasome inhibitor in clinical use for multiple myeloma. Here, we investigated whether the combination of these compounds would yield increased antitumor efficacy in multiple myeloma and glioblastoma cell lines in vitro and in vivo. Unexpectedly, we discovered that various green tea constituents, in particular (-)-epigallocatechin gallate (EGCG) and other polyphenols with 1,2-benzenediol moieties, effectively prevented tumor cell death induced by bortezomib in vitro and in vivo. This pronounced antagonistic function of EGCG was only evident with boronic acid-based proteasome inhibitors (bortezomib, MG-262, PS-IX), but not with several non-boronic acid proteasome inhibitors (MG-132, PS-I, nelfinavir). EGCG directly reacted with bortezomib and blocked its proteasome inhibitory function; as a consequence, bortezomib could not trigger endoplasmic reticulum stress or caspase-7 activation, and did not induce tumor cell death. Taken together, our results indicate that green tea polyphenols may have the potential to negate the therapeutic efficacy of bortezomib and suggest that consumption of green tea products may be contraindicated during cancer therapy with bortezomib.

2009 Myeloma update

I don’t have a lot to blog about here because my myeloma has been stable since last fall. There’s not much there at all.  If you don’t have myeloma, I have only a little bit more than you do.

These labs were done 12/08/2008


IFE SERUM
(2) MONOCLONAL IgA-LAMBDAS DETECTED BY IFE.
SPE M-SPIKE 1                      0.17        g/dL
SPE M-SPIKE 2                      0.12        g/dL

IG FREE LIGHT CHAINS SERUM
                                                         Reference
  IG FREE LIGHT CHAIN KAPPA         *0.16mg/dL       [0.33-1.94]
  IG FREE LIGHT CHAIN LAMBDA         1.85mg/dL       [0.57-2.63]
  IG FLC KAPPA/LAMBDA RATIO         *0.09            [0.26-1.65]

IMMUNOGLOBULIN PROFILE
IMMUNOGLOBULIN G                  *374mg/dL       [588-1573]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN A                  *415mg/dL       [46-287]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN M                  *31mg/dL       [57-237]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN E                   13 IU/mL       [4-269]

I love AFLAC

Before I got cancer, I made sure I had an AFLAC cancer policy. They’ve been great, and I recommend that everyone who is planning on having cancer  enrolls in one of their plans before getting it.  The trouble is, you don’t know if/when you might get cancer, so you better just plan for it. Expect the worst and hope for the best, some say.

I filed my claim for 2008 a week or so ago and was really surprised when I received a check in the mail for $4600. Something wasn’t right.  It should have been $900. I’ve been filing these claims for years, so I knew a mistake had been made.  I picked up the phone and called AFLAC. They’re going to investigate it and will send a letter when they figure out what happened.  Wouldn’t it be nice if they said it was a reward for making it 6 years with myeloma?

What would you do?

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Lyrica

My doc gave me an rx for Lyrica a few weeks ago to help with the neuropathy.   I posted on the mailing list to get an idea of what kinds of side effects others had experienced when they used it. Mostly, I’d say they were not very positive responses.  Almost everyone quit taking Lyrica because of side effects such as edema. One patient’s experience was pretty severe. I won’t be taking it.  My PN isn’t present 100% of the time (although the numbness is).  I’ll just take tramadol or some other medication PRN.

The issue is that I plan on making a very long trip out of the country in the spring.  The PN is worse when I can’t either be moving or have my legs up, so I was concerned about taking an extremely long flight.  It might just be best for me to be prepared with some vicodin (someone recommended this).  Once I’m there, I’ll just need a good night’s sleep to recover and all will be well.

If you have any experience with chemo-induced PN, let me know how you handle it.