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.

Advice from a cat lady

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.

Lingering effects of peripheral neuropathy

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/

My two m-spikes

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?

Dr. Brian Durie to host a teleconference

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

H1N1 flu that’s resistant to Tamiflu

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

Three Harpsichords

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

Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data

Subject: Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data

The Office of Rare Diseases Research, National Institute of Health, is sponsoring a workshop entitled “Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data,” which will be held in the DoubleTree Hotel in Bethesda, Maryland, on January 11-12, 2010.

The workshop objective is to discuss the development of an infrastructure for an internet-based platform with common data elements utilizing a federated rare disease registry able to incorporate:
1. Existing rare disease registries
2. Patient organizations with no registry looking to establish one
3. Patients with no affiliation with a support group looking to belong to
a registry

The expected outcome of the workshop is to gain acceptance of the concept of a federated rare disease patient registry and participation in creating this patient registry from as many curators of patient registries and other stakeholders as possible. Participating stakeholders will discuss harmonizing standardized common data elements, vocabulary, and open source software to enable the exchange of data and information to facilitate research collaborations. The purpose of this effort is to establish a rare disease registry to benefit the rare disease patient and research communities.

A link to the draft agenda is available at the bottom of the registration page http://www.rarediseases.info.nih.gov/patient_registries_workshop/addcontact.aspx

For additional information please contact: Yaffa Rubinstein (ORDR), 301-402-4338.

Sign Language Interpreters will be provided. Individuals with disabilities who need reasonable accommodation to participate in this event should contact Yaffa Rubinstein (ORDR),  301-402-4338 and/or the Federal Relay (1-800-877-8339).

International Myeloma Foundation’s 3rd Annual Comedy Celebration for the Peter Boyle Memorial Fund

Ray Romano hosted the IMF’s third annual Comedy Celebration for the Peter Boyle Memorial Fund a few days ago. I’m so glad to see the IMF getting these big names to help raise money for research. Every life lost to myeloma is an important one, which is why these people are giving their time and lending their names to this cause. Read more at www.myeloma.org.

I really respect and admire the people at the IMF.  I’ve been to three of the patient and family seminars and recommend them to anyone I meet who has myeloma or cares for someone with myeloma.  I hope you’ll make a contribution so the IMF can find a cure and continue to educate patients and their families.