Category: Myeloma Treatment

Myeloma Treatment

More facebook time

Most of us need to find reasons to spend more time on facebook, so Margaret and I have come up with a facebook group for myeloma patients, caregivers, friends, family and others.

http://www.facebook.com/group.php?gid=108654495840465

From Margaret’s blog:

  • And finally, as if we weren’t busy enough!, day before yesterday a friend and I decided to create a Multiple Myeloma Support Group on Facebook. It’s a private support group (that is, FB users who are not group members cannot read anything we write)…so, if you belong to FB, please join us! The group was created less than 48 hours ago, and we already have 74 members… By the way, this group is intended mainly for myeloma, SMM and MGUS folks and caregivers, but other cancer patients are welcome, too. Click on: http://www.facebook.com/group.php?v=app_2373072738&gid=108654495840465#!/group.php?gid=108654495840465 (I hope the link works…please let me know if it doesn’t). Then click on “Request to join.” If your membership request doesn’t get approved immediately, that simply means that Beth and I aren’t online, so please be patient. Anyway, until there is a cure, we need to provide support for one another…and also exchange useful information about both conventional and alternative treatments, with a bit of humor sprinkled around, whenever possible…!
  • While you are at it, you can also become a fan of my blog on FB: http://www.facebook.com/photo.php?pid=3900082&id=600258519#!/pages/Margarets-Corner-Living-with-smoldering-myeloma/312414599519?ref=ts

Please join us there. Stop in and say hello!

Warm weather and shoeless feet

When summer comes around, the first thing I want to do is run around without shoes on.  I hate wearing shoes, and the PN has made most shoes pretty uncomfortable for me.  A few years ago, before I went in for my stem cell transplant for the treatment of my multiple myeloma, I was walking by Fungal infection toenailthe pool and I stubbed my toe on something. Toe stubbing is a more frequent occurrence for me now that I have neuropathy.  It’s hard to keep track of just exactly where my feet are.  Anyway, aside from hurting like the dickens, the toe injury included some broken nails. I thought nothing of it.

A few weeks later, I had high dose chemo, which wiped out my immune system.  In no time, I noticed that my toes were discolored and the nails on two of my toes were getting flaky. It was the weirdest thing I ever saw.  Even the transplant doctors were puzzled about the shade of purple my toes had become.  I’m including a picture so you can see what it looked like, although it’s not at all appealing.  It just might be something you encounter, so it could prove useful at some point.  I apologize for the yuckiness of the picture, but there’s no way you could imagine how purple my toes were without seeing them.  I eventually pulled off the nails, which grew back rather quickly.  Everything was better by the time I went home from the transplant clinic.

The lesson?  If you have neuropathy and a weakened immune system, wear shoes.

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/

Feeling “ungood”

Zometa IVI’m feeling ungood today.  Maybe even part way doubleplusungood. I had Zometa yesterday, so this could explain some of it. I usually feel a little bit flu-ish the day after a Zometa infusion. I’ve had a few days of feeling sneezy and nose-runny, and I feel very tired.  I think I just need to get several nights of good sleep.

Here’s a picture of the Zometa IV to satisfy your curiosity. I have 250 ml saline with it, over about 45 minutes. My onc now has wireless, so I took a computer with me yesterday so I could get a little work done.

Latest electrophoresis, proteins and free light chains

Here are my latest results.

Specific Proteins

Test Name    Result       AB    Normal Range   Units
IGG          466          L     600-1700       MG/DL
IGM          31           L     35-290         MG/DL
IGA          408          H     40-400         MG/DL

Electrophoresis

The SPE pattern demonstrates two bands of restricted mobility in the gamma region.

Immunofix, Serum

Monoclonal component typed as IgA Lambda. Concentration of monoclonal protein determined by serum protein electrophoresis is 0.4 g/dL.
Monoclonal component typed as IgA Lambda. Concentration of monoclonal protein determined by serum protein electrophoresis is 0.3 g/dL.
*Suggestive of a monoclonal component typed as IgG Kappa. Concentration of monoclonal protein is too low to accurately quantify.

* This is new! Previously, I’ve only ever had just two m-spikes. That’s not enough?  I vaguely remember seeing this on one other report, so maybe it’s something that comes and goes.  In any case, it’s not enough to measure, so I’m not alarmed.

Serum Free Light Chain Assay

Test Name                  Result     AB  Normal Range    Units
Kappa Free, Serum          0.1380     L   0.33-1.94       mg/dL
Lambda Free, Serum         1.24           0.57-2.63       mg/dL
K/L FLC Ratio              0.1113     L   0.26-1.65       mg/dL

Still, no myeloma treatment for over two years.

MRIs and Mutliple Myeloma and gadolinium, oh my!

Margaret’s blog has a few posts written about the use of gadolinium as a contrast agent.  I think it’s important for MM patients to know about this.  You can the read posts at her blog.  These are all the posts containing the word, “gadolinium.”
»The gadolinium used in MRIs makes myeloma cells proliferate

In other news, there’s not much going on.  Last week I got to participate in a local radio show with two of Moore County’s finest, Detective Sgt Donnie Shingleton and Sgt Tim Cameron, of the Moore County Sheriff’s Department.  The topic was home security, which included discussions about fraud.  My part was Internet fraud.  My words didn’t really come out right!

Ticket to Ride by Ed GormanI start a creative non-fiction class tomorrow, thanks to my sister, Rachel.  She’s encouraged me to git me some more learnin’ so’s I kin write better.

Monica and I are taping for another radio program this morning.  I’ll let you know how that one turns out.

How many of you bought Ed Gorman’s new book? If you haven’t gotten it yet, now’s a good time.  » Ticket to Ride by Ed Gorman.   He wrote something to me on the dedication page!

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

Myeloma treatment drug maker Celgene flagged for a buy

Probably most of us who’ve had treatment for our myeloma have been prescribed one of the drugs manufactured by Celgene.   Celgene makes Revlimid® (lenalidomide) and Thalomid® (thalidomide).

That really annoying guy on TV, Jim Cramer (Mad Money, CNBC), says it’s on his list of stuff to buy.   According to the CNBC site:

So when do you buy CELG? Cramer said that investors could wait until the annual American Society of Hematology (ASH) meeting on Dec. 5, where Celgene is expected to present “some terrific Revlimid data.”

“I wouldn’t pull the trigger on this trade until the week before the conference,” Cramer said.

http://www.cnbc.com/id/33603726

I’ll be waiting to see what happens during the ASH conference.