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.

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.

 

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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!

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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/

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Yum yum sauce

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A friend recently introduced me to a small fast food restaurant called Tokyo Express. Seriously, I could eat there every day.  At least twice a day.

Tokyo Express is in a strip mall off the main drag.  It’s a small place, nestled between a tobacco shop and a beauty supply store.  I never went there because I didn’t really know what it was, and the location is kind of on the decrepit side.

The food is tasty, and it’s fast.  It’s nothing you couldn’t do at home if you had all the ingredients.  I always get the jumbo shrimp and scallops. They pile on sauteed onions and zucchini, steamed broccoli and fried rice.

The thing that makes the meal complete is their white sauce.  I’ve enjoyed the white sauce at many Asian restaurants, but never thought much about it until a co-worker asked me to bring back 4 containers of it from my lunch run to Tokyo Express.  Four containers?  I thought she was kidding, but she wasn’t.  She said it was the tastiest condiment she’s ever had.

This prompted me to look it up on the web. It’s known as white sauce, yum yum sauce, shrimp sauce or sakura sauce.

Why is this stuff so good?  Its basic ingredient is mayo.  If you like mayonnaise, you’ll probably like white sauce.   If you’re in my neck of the woods, stop in at Tokyo Express for a meal.  Maybe I’ll see you there!

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A new and fun way of eating fruits. No spoon, no knife, no mess!

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Fruit you squeeze from a package.I was grocery shopping a couple of days ago, and this thing called Buddy Fruits caught my eye in the produce department. I picked it up and looked at it, and couldn’t quite figure it out, but it seemed to have potential. I imagined using it on toast or on oatmeal.  Yeah, I could try this.  Plus, it was only a dollar.  I bought the apple/banana product. How could I go wrong?

I was anxious to try my new purchase on my cream of wheat the next morning, so I opened it and gave it a squirt.  My first impression was that it had the consistency of baby food.  Or apple sauce that’s too saucy. I mixed it in with the cream of wheat and tasted it.  It definitely tastes like apple sauce. I wasn’t as thrilled as I thought I’d be.

I was imagining something like Polaner All Fruit, but in a container that looks like astronaut food.  It doesn’t need to be refrigerated until it’s been opened.  After that, you can keep it in the fridge for up to 24 hours.  I’ve had mine in there for days, since I’ve only been squirting out a tablespoon or so onto my cereal.

Fruit you squeeze from a packageI can’t read the small print on the package, so I went online today and found the product’s web site. It was then that I learned the intended function of this stuff.  Buddy Fruits have been created, as their slogan puts it, to render “Eating Fruits Made Easy!”  I’m not kidding.  The title of my post came right from their web site:  “A new and fun way of eating fruits. No spoon, no knife, no mess!”

Most of the fruit I eat doesn’t require a spoon or a knife.  I’m sticking to apples and bananas in their original forms.

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Advice from a cat lady

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If you have cats, you probably have one that refuses to use the litterbox.  Instead, he or she zeros in on the piles of laundry in the laundry room, any soft cushion on your best piece of furniture, or, God forbid, your bed.  You’ve tried everything, but nothing’s working for this kitty.  There’s no litter that will satisfy her.  You’ve added at least one litterbox to every room in the house.  What now?

The next thing you should do, is take the cat to the vet.  No, I’m not saying you need to have her euthanized!  Read on.  The vet needs to check your pet over thoroughly, to make sure he or she doesn’t have a urinary tract infection. If one is present, an antibiotic will be given, and you may see your pet’s litterbox habits improve.

However, the possibility remains that, as my vet put it, “it’s a behavioral problem.”  Maybe the cat is being stalked at the litterbox by his or her feline housemates?

Puppy training pads for cat There may not be much you can do about the situation.  Unfortunately, experts say that “inappropriate elimination” is the number one reason cats are surrendered to shelters, abandoned  and euthanized.

Before you give up your cat, try one more thing.  This worked for me, and we’ve had harmony in the house ever since.  No “accidents” either!

Try puppy training pads or the human version, referred to as “chux.”  Lay a few of them down in the area where you errant kitty is known to eliminate.  If your situation turns out to be like mine, you’ll find that the cat is now urinating and/or defecating on the pads instead of the carpet, clothes, sofa or bed.  I actually place the pads near the litterbox I want my cat to use, and she uses the pads there.  I will warn you that you can go through 4-6 pads a day, depending on your cat’s eating and drinking routine, but it’s well worth it.  The best thing about it is that the cleanup is fast and easy!  I just pick up the used pad and put another in its place!

You can actually buy the human version for less, if you shop around.  I find them for less than $20 per 100.

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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/

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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?

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