Author Archives: Beth

I was diagnosed with MM in January of 2003. I underwent various treatment until late August, 2007, when I had an autologous stem cell transplant. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

04May 2013

Iron Deficiency Anemia

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Strawberries are high in vitamin C

Strawberries are high in vitamin C

If you struggle with iron deficiency, and are not a meat eater, I can tell you a quick way to get 50% of your daily iron in one shot.  This is how I do it.

For breakfast, prepare one serving of cream of wheat.  Add to it 2 ounces of fresh strawberries.  Make sure to use organic strawberries, please. Locally grown, if you can get them.  Strawberries are my favorite berry, but they’re also one of the EWG’s “Dirty Dozen.” You can watch their video here >  http://www.ewg.org/news/videos/ewg-and-pesticides-dirty-dozen, so try to buy organic.

Why strawberries?  They have a high vitamin C content.  Why does that matter?  This is what the CDC says:

In addition to a healthful diet that includes good sources of iron, you can also eat foods that help your body absorb iron better. For example, you can eat a fruit or vegetable that is a good source of vitamin C with a food or meal that contains non-heme iron. Vitamin C helps your body absorb the non-heme iron foods you eat, especially when the food containing non-heme iron and the vitamin-C rich food are eaten at the same meal.

You can read more about that here:
http://www.cdc.gov/nutrition/everyone/basics/vitamins/iron.html

So, if you need more iron in your diet, a very easy way to accomplish that is to have a breakfast of an iron fortified cereal and a fruit high in vitamin C.

 

28Apr 2013

Leg Rash? Bedbugs?

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myeloma blog statsI don’t really blog much anymore, because I’m not being treated for my multiple myeloma these days.  It’s been pretty stable for nearly six years.  I try not to live in the myeloma world too much.  Actually, I don’t really even try.  It just works out that way.  When I first learned I had myeloma, back in 2003, it was all I could think about, from the time I woke up in the morning, until the time I went to sleep.  I’ve talked to a lot of people who experienced the same sort of involuntary obsessive thoughts about the disease.  It’s a strange feeling.  You know there’s something inside you that’s trying to kill you, and you can’t stop thinking about it.  The farther you get from your last treatment, the less you think about it.

Since I don’t do much blogging these days, I don’t pay attention to my stats, either.  This morning I decided I’d take a look.  What surprised me was the number of people who found my blog by searching for something with the word “rash” in it.    I had written a post in 2007 about what I think could have been an insect bite on my leg.  As you can see from the image on the right, “bed bugs rash” is now the number two search phrase that brings people to my blog.  Very interesting.

In the past, my blog was a big attraction for people searching about shingles.  I’ve had shingles at least three times, and blogged about it — with pictures.  I wasn’t shocked when I used to see that turn up in the analytics.  “Bed bugs rash,” however, is surprising!

27Apr 2013

I just found this

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It’s been a while since this was written, but I just became aware of this NPR story about Minnesota Don.  Don’s an amazing person, in every way.

Targeted Cancer Drugs Keep Myeloma Patients Up And Running

Don Wright got diagnosed with multiple myeloma at what turned out to be the right time. It was 10 years ago, when he was 62.

That was at the beginning of a revolution in treating this once-fearsome , which strikes around every year. The malignancy can literally eat holes in victims’ bones, which can snap from the simple act of bending over to pick up a package.

Read More Here

I have never met Don in person, but I have spoken to him on the phone, and he even  did me a super big favor once.  A couple of times.  He’s been great about sharing his experiences with the myeloma treatments he’s undergone.  He’s been on pomalyst lately, which is a new-ish drug for mm patients.

You can listen to the story at the article’s home > http://www.npr.org/blogs/health/2013/02/18/172098789/targeted-cancer-drugs-keep-myeloma-patients-up-and-running

You can read Don’s blog here > http://myelomahope.blogspot.com/

06Mar 2010

Lingering effects of peripheral neuropathy

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I started to get some neuropathy just a few months into my first treatment, which was Thalomid. I knew it was a possibility, but I’m hopelessly optimistic, and assumed it wouldn’t happen to me. I quit taking thalidomide within 8 months, because I didn’t want the neuropathy to progress beyond a point that I thought would severely impact my quality of life.

What I ended up with is numbness in my feet and sometimes pain. It started out as a pretty intense burning feeling just three months after I started treatment in 2003.  My feet felt as though they were on fire!  From there, it progressed to numbness.  It sort of feels like my feet aren’t my own. Shoes are no longer comfy.

After treatment with Revlimid and then Velcade, my neuropathy progressed some more.  It changed a little, too.  I now have some significant pain at times. I have to work with my feet up.  I can’t sit at a desk, or anywhere, really, for very long. If I’m seated with my legs down for more than a half hour, I end up with pain up to my knees. I have to get my legs elevated or even lie down to get some relief.

When I first began to feel the effects of peripheral neuropathy (PN), I even had some trouble walking.  I’m used to it now, so I no longer have to keep my eyes on my feet when I walk.  It took a while for me to adjust.

A few days ago I was attempting a an exercise that involved hopping. It was really weird, because I didn’t really know where my feet were.  I had to ask someone else if my feet even left the ground!  That evening, while I was walking the dog, I tried something I hadn’t done in ages.  I tried skipping, just for the heck of it. I couldn’t do it!  Is that something I forgot how to do, or is the PN messing with me?

I decided to look for some information on the web, and found some facts on Livestrong.com:

What are the symptoms of neuropathy?

Peripheral neuropathy can affect the nerves which allow you to tell the position of your hands or feet, the nerves that allow you to sense hot or cold, or the nerves that carry pain sensation. The types and severity of neuropathy symptoms vary greatly. It is difficult to determine the degree of peripheral nerve injury only by the symptoms produced. Peripheral neuropathy symptoms are almost always greatest at night.

Common signs and symptoms include:

  • Numbness or tingling, especially of the hands or feet
  • Pain or cramping, especially of the hands , feet or calf muscles
  • Sensitivity to touch or temperature
  • Loss of reflexes
  • Muscle wasting in the hands and feet
  • Weakness, especially in the feet or hands
  • Clumsiness
  • Loss of balance, particularly in the dark
  • Dizziness, especially when getting up from a bed or a chair
  • Sexual dysfunction

Are some survivors at greater risk for neuropathy?

Neuropathy may occur from cancer or the treatment received. The following types of cancer may bring a higher risk:

  • Lung
  • Breast
  • Ovarian
  • Myeloma
  • Lymphoma and Hodgkin’s disease
  • Testicular

Here’s a link to the entire article: http://www.livestrong.org/site/c.khLXK1PxHmF/b.2660677/

I even found that they have a group for discussion of neuropathy secondary to drugs:

http://www.livestrong.com/groups/group/livestrong-neuropathy-secondary-to-drugs/

03Dec 2009

My two m-spikes

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I wanted to post my results, and got a little behind! Here it is:

SERUM PROTEIN ELECTROPHORESIS: COMPARED TO 6/1/09, NO SIGNIFICANT CHANGE IN PREVIOUSLY CHARACTERIZED (2) IgA-LAMBDAS FROM 0.25 TO 0.26 G/dL AND FROM 0.19 TO 0.15 G/dL.

The two m-spikes have been staying this way for several months now. The complete bone survey report says, “No
aggressive lytic or sclerotic osseous lesions.”

Good, eh?

25Nov 2009

Dr. Brian Durie to host a teleconference

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Dr. Brian Durie, Chairman and Medical Director of the International Myeloma Foundation, will host a teleconference next week to highlight key myeloma presentations at the upcoming American Society of Hematology Annual Meeting. The teleconference will take place on Monday, November 30th at 11 a.m. ET.

Discussion topics will include:
§ Treating the full cycle of myeloma
§ Pipeline drugs – what’s next and why they’re needed
§ Genetic variations in survival and outcome

Here are the dial-in details for the teleconference:

800.860.2442 (U.S.) or 412.858.4600 (outside of the U.S.)
Pass code: IMF

20Nov 2009

H1N1 flu that’s resistant to Tamiflu

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I just read about a strain of H1N1 flu that’s resistant to Tamiflu. Four of these cases have been reported at Duke Medical Center in Durham, North Carolina.  I wondered if it has possibly infected people in the transplant clinic? A friend had her SCT at Duke one year when the flu was rampant in the transplant clinic.  She said that a few of the patients became quite ill.  She had the flu herself. She recovered and had a second stem cell transplant.

“All four of the North Carolina patients were hospitalized and were very ill with underlying severely compromised immune systems and multiple other complex medical conditions, according to researchers from the Duke University Medical Center. Three of the four died. No details have been released about how the patients caught the resistant virus or whether there was any contact among them.”

Maugh II, T.H. (2009, November 20). Swine flu seems to be trailing off — for now, at least. Retrieved from http://latimesblogs.latimes.com/booster_shots/2009/11/swine-flu-seems-to-be-tailing-offfor-now-at-elast.html

15Nov 2009

Three Harpsichords

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We went to a concert Friday night in Chapel Hill that featured three harpsichords!  The program included music by Bach and a local composer named Edwin McLean.  I really enjoyed McLean’s music, and will be looking for a CD.

Harpsichord concert

One of the performers, Elaine Funaro, played her new harpsichord (Opus 333). The instrument was built by Richard Kingston. The harpsichord was painted by Durham artist Lisa Creed.

Richard Kingston

Beth