Jun 1, 2009 Posted by Beth on Jun 1, 2009 in Duke, Durham, Myeloma | 4 comments

Duke Lemur Center / Bone Marrow Transplant Clinic today

Monica and I got to go to the Duke Lemur Center in Durham, NC today for business.  It was great!  I took some pictures through the fences with my iPhone camera, and this was the best of them. I’m afraid I can’t tell you what type of lemur this is, but I’ll find out.

Just before the meeting at the Lemur Center, I had a checkup at the Bone Marrow Transplant Clinic.  I’ll have the results of my tests on Wednesday.   It’s been almost two years since I had a skeletal survey, so I scheduled that for September.  The skeletal survey is a series of xrays of the long bones, skull and ribs and spine. I asked about a recent report I read that suggests that PET scans should be used for monitoring myeloma.  My doctor does those if there’s activity such as an increasing m-spike and nothing shows up on xrays.  The PET can show plasmacytomas and other activity.

I’ve been told that standard radiographs aren’t much good at detecting bone damage until there’s been a significant amount of destruction, so it’s not a good early warning indicator. I’d like to have a PET scan just to see what’s lurking.  I know they’re expensive.  A few years ago I called around to get the costs at various places  because I wanted one, but was told by my insurance company that they weren’t covered for myeloma. At the time, the cheapest PET scan I could find was about $3,000.

Did you know you can do that?  If you’re not insured, or your coverage isn’t very good, call around to see who has the best deals on tests or procedures.  The costs can vary quite significantly between institutions.  Another money-saving tactic is to find out what’s covered under what setting.  For example, my insurance has me pay 20% of services performed in hospitals.  That’s why I have most of my chemo and all of my Zometa infused at a nearby doctor’s office.  When I do that, it’s just a $30 copay. Investigate all of your options!

Jan 3, 2009 Posted by Beth on Jan 3, 2009 in Durham, Myeloma, Myeloma Treatment, Neuropathy, News | 7 comments

Lyrica

My doc gave me an rx for Lyrica a few weeks ago to help with the neuropathy.   I posted on the mailing list to get an idea of what kinds of side effects others had experienced when they used it. Mostly, I’d say they were not very positive responses.  Almost everyone quit taking Lyrica because of side effects such as edema. One patient’s experience was pretty severe. I won’t be taking it.  My PN isn’t present 100% of the time (although the numbness is).  I’ll just take tramadol or some other medication PRN.

The issue is that I plan on making a very long trip out of the country in the spring.  The PN is worse when I can’t either be moving or have my legs up, so I was concerned about taking an extremely long flight.  It might just be best for me to be prepared with some vicodin (someone recommended this).  Once I’m there, I’ll just need a good night’s sleep to recover and all will be well.

If you have any experience with chemo-induced PN, let me know how you handle it.

Dec 4, 2008 Posted by Beth on Dec 4, 2008 in Cancer, Stem Cell Transplant | 0 comments

Send positive thoughts

I’ve been writing to Suleyman, who is in the Netherlands and is undergoing an allo stem cell transplant to treat and hopefully cure his leukemia.  He had to undergo some high dose chemo (busulfan and cyclophosphamide). He’s having a rough time, so he needs some healing thoughts sent his way.  The stem cells from his brother will take about three weeks to engraft.  I hope I can get him to send a picture!

Nov 30, 2007 Posted by Beth on Nov 30, 2007 in Cancer, Myeloma, Stem Cell Transplant, Wake Forest | 0 comments

This is a Neostar Triple Lumen Catheter

This is the Neostar triple lumen catheter I had at Wake Forest last year (in 2006).  It was noticeably heavier than the hickman double lumen. I had this thing in a plastic bag for almost a year. It had never been taken out and cleaned since it was removed, so you can imagine how gunky it was.  I tried to flush it with bleach and water, which wouldn’t go through due to a clog.

The Hickman (Bard) catheter I had at Duke during the summer can be found here.

I think it’s time for a new blog theme.  I’ll be on the lookout.  Expect a change soon!

Nov 26, 2007 Posted by Beth on Nov 26, 2007 in Cancer, Duke, Durham, General, Life, Myeloma, Stem Cell Transplant | 2 comments

Hair Update

I thought I’d give a visual progress report of my hair growth.  Here’s a picture I took today.  You can compare it to one I took on October 13, 2007.

Kind of weird, huh?  And, not too attractive. My hair started to fall out in September, after I had high dose chemo (melphalan) on August 28th. Some spots still look bald, even though there’s a covering of very fine, nearly invisible hair.

I had a follow up appointment at Duke today.  I won’t have any results until Wednesday afternoon.  Not anything important, anyway.  I didn’t even bother getting a copy of my CBCs. Dr. Long just told me they were completely normal. Throughout my entire MM experience, my CBC’s have hardly ever been anything but normal.