Category: Myeloma

Myeloma

NC get together this summer for Myeloma patients/caregivers/families

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We’re trying to organize a get together this summer for members of the lists (and others) who live in or near NC, or who will be in NC this summer. The subject is wide open in terms of what, when and where. Anyone who would like to get together for a picnic or some other informal gathering can use my contact form to let me know. Once we have a list of potential attendees, we’ll be better able to select a date and location that won’t be too difficult for most of us to work with. We hope this will be the first of many to come!

Please fill out my contact form if you’d like to be in on this. Let’s have some fun!

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Living With Cancer on Discovery Channel

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As part of “Koppel on Discovery,” an original Discovery Channel series, Living With Cancer premieres on Sunday, May 6th at 8PM ET/PT, simultaneously on Discovery Channel and Discovery Health. The two-hour documentary will be followed by a live town hall meeting led by Ted Koppel and a panel that includes Leroy Sievers, Elizabeth Edwards, Lance Armstrong.

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MM (Multiple Myeloma) & MDS (Myelodysplastic Syndrome) Patients & Caregivers

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MM (Multiple Myeloma)
MDS (Myelodysplastic Syndrome)

Patients & Caregivers

Clinical research study on a newly launched medical product. The purpose is to gain insight and gather opinions from patients and their caregivers that are diagnosed with MM or MDS. It is not necessary to be taking medications to participate. All information is completely confidential and used for research purposes only.

In person 45-50 minute interview

Locations & Dates -Philadelphia, PA – 5/10,5/11,5/12

Fort Lauderdale, FL ??? 5/14,5/15

Phoenix, AZ ??? 5/16, 5/17, 5/18

Participants receive $150 cash.

Please contact to schedule or ask questions.

Jan Mallery-Groom RN
Project Manager
212-217-0407 / 201-284-8201

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IgA Turns Around

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I had blood drawn on April 26th and saw th report today. The last one was discouraging, but I was reminded not to panic until we saw a trend. This time, it’s down. The m-spike(s) are a tiny bit lower, too.
IgG: 350 mg/dL (range: 694-1618) Low — 375 on April 8
IgA: 876 mg/dL (range: 68-378) High — 1080 on April 8
IgM: 35 mg/dL (range: 60-263) Low — 23 on April 8
M-spikes: 0.35 g/dL and 0.10 g/dL (no m-spike is normal) — 0.44 and 0.13 last time

I wonder if there’s any way the April 8th test was elevated because of the virus that caused my shingles?

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B vitamins to improve neuropathy?

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I had a visit to the podiatrist Friday to have a foot problem checked out. I also let him know about my grade 1 neuropathy. He suggested something called Metanx, and gave me two 5 day sample packs. It’s a Rx only supplement. It actually says, “Medical food” on the box. That means it won’t be covered by insurance, unfortunately. I’ll give it a try though, and let you know how it works. He said it’s not for the painful kind of neuropathy. For that, he prescribes Lyrica or Cymbalta, which he says are well-tolerated.
Here’s the Metanx web site if you’re interested.

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Beer

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Tom posted this on the list today.

A Reunion of Friends
Eighteen years ago, Pete Slosberg, of Pete’s Wicked Ale fame, brought Alan Shapiro and Virginia MacLean into his company. While these long-time friends later pursued different professional paths, the news that MacLean had been diagnosed with multiple myeloma, a form of bone cancer, brought them back together. They have reunited to create a beer inspired by Pete’s early recipes, and dedicated to raising awareness and support for the Institute for Myeloma & Bone Cancer Research in Los Angeles.

Reunion-A Beer for Hope is an organic imperial brown ale brewed by Slosberg and Dan Del Grande at Bison Brewing Company’s organic brewery in Berkeley, CA. It is brewed with six different organic malts, three different hops and dryhopped. It is 7.5% alcohol by volume. Reunion will be sold in 22 ounce screen-printed bottles via Shapiro’s SBS-Imports distributor network in California, Oregon, Washington, Arizona, Colorado, and Illinois. It has a suggested price of $4.99 per bottle.
All profits generated by SBS from the sale of REUNION will benefit IMBCR.

The web site is http://www.reunionbeer.com/

Visit the IMBCR web site to see a video of Debbie Reynolds talking about MM!

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Mayo Clinic appointment

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I have a May 9th appointment to see Dr. Hayman at the Mayo Clinic in Rochester, MN. I’m looking forward to getting a fresh perspective on my case. In addition, I may get some testing that hasn’t been done before. I’m not sure what all will be done, but I was told to expect to stay 2-4 days. That’s not very helpful while making flight reservations, but I had to have a Saturday night stay anyway for a better fare.

My uncle Jon died this morning. He had stomach cancer, which had spread to his liver. His stomach had been removed months ago. When he found out he was sick, he was given 6 months to live. He survived 14 months. This was my dad’s brother. I admit I’m not sure how old he was, but I think he was in his late 60s. We aren’t a close family. I would guess that it’s been over 15 years since I even spoke to my uncle. Heck, I have a brother I haven’t seen or spoken to in something like 2 years (and we don’t even know where he is). We just don’t have the kind of bond that a lot of families have, extended or nuclear. It just occurred to me at this moment that I should probably call my dad tomorrow to see how he is. This was his brother. I don’t think they were close, but a brother is a brother. Hmm. Well, he’s only even come to see me once in the 4 years since I was diagnosed with myeloma.

Since I’m on a roll about families, I’m going to talk about the tragedy at VT. I can’t imagine the grief that the families and friends of the victims must be feeling. I hope they have the support they need. I think it’s somewhat shameful that this is all we’re going to hear about on TV news programs for a while. In my mind, it kind of takes away the dignity of the victims.

Can we stop things like this from happening? I don’t know. Parents, pay attention to your kids. If they have no friends, and are sullen and angry, something’s wrong. Get help.

Not that this is going to stop any future murders, but let’s at least require US citizenship for the purchase of firearms. Then let’s talk about why a citizen needs to have automatic weapons.

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Another bout of shingles

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According to the NIH web site,

Shingles (herpes zoster) is an outbreak of rash or blisters on the skin that is caused by the same virus that causes chickenpox — the varicella-zoster virus. The first sign of shingles is often burning or tingling pain, or sometimes numbness or itch, in one particular location on only one side of the body. After several days or a week, a rash of fluid-filled blisters, similar to chickenpox, appears in one area on one side of the body. Shingles pain can be mild or intense. Some people have mostly itching; some feel pain from the gentlest touch or breeze. The most common location for shingles is a band, called a dermatome, spanning one side of the trunk around the waistline. Anyone who has had chickenpox is at risk for shingles. Scientists think that in the original battle with the varicella-zoster virus, some of the virus particles leave the skin blisters and move into the nervous system. When the varicella-zoster virus reactivates, the virus moves back down the long nerve fibers that extend from the sensory cell bodies to the skin. The viruses multiply, the tell-tale rash erupts, and the person now has shingles.

I’m taking Famvir for my shingles, 3 times a day, for 7 days. This outbreak has manifested itself on my right arm and hand. You’d think I would have known what it was, since I had it a few years ago. I didn’t though, and was glad I showed the doctor. I have been struggling with rashes from Velcade & Doxil, so I was inclined to ignore it. The difference was that this rash hurt. The other rashes had pretty much cleared up after I started to get decadron and benedryl in my IV with each treatment, thanks to Eric’s suggestion.

Famvir is something that’s prescribed for genital herpes, so I’m embarrassed when I go to pick my rx. Dumb as this is, I loudly ask the pharmacist if I need to take my shingles medicine with food.

There’s more on my blog about my experiences with shingles. and here:
More about shingles on this blog

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