Wednesday, March 31, 2010


Main Entry: non·di·ag·nos·tic 
Pronunciation: \-ˌdī-ig-ˈnäs-tik, -əg-\
Function: adjective
: not diagnostic nondiagnostic lung scan> nondiagnostic physical exam>

So, got the preliminary biopsy results back tonight... and they are nondiagnostic.  The biopsy did not get a big enough tissue sample to make a definitive diagnosis.  However, there was no sign of cancer.  The tissue showed increased vascularity and interstitial thickening.  I think that the nodule is another manifestation of the scleroderma.

The tissue cultures are still pending, but show no signs of growth to date.

I should have more information in the next couple of days as my doctors weigh in--mostly on whether or not to repeat the biopsy--but I promised I would post it as soon as I know and I'm a girl that keeps my promises!

So, while it's a limbo result, I'm kinda used to that and glad it's not bad news!  Let's celebrate!


Monday, March 29, 2010

I am the Human Pincushion

7 IV start attempts, one blood draw, and 2 lung biopsies later, I am safely home resting.  All went well, and I should have results soon!  I am none the worse for wear, plus a few bruises!

Thanks for your kind thoughts!


Saturday, March 27, 2010

The Big Biopsy

Img: 3D lung
Over the past several months I have developed a couple of nodules on my lungs, in addition to the "ground glass" appearance seen most often in scleroderma lung disease on high resolution CT scan.  One of these nodules grew rather quickly since the scan of 6 months ago.  There is a small concern that it could represent something other than scleroderma, such as a fungal infection in my lungs (from being on immunosuppressants and spending a lot of time at a stable) or another disease process.  Before I can proceed to the stem cell transplant, therefore, we must determine what this tiny little nodule represents.

And so Monday I will be down at Green Hospital for a lung biopsy.  Wish me luck!  It should be a fairly easy procedure with just a needle used to sample the tissue under CT guidance.

Monday is also Steve's birthday.  Just in case I'm not up for a big party that night, we're heading out to dinner with his Dad and the kids tonight.

In other exciting news, I was asked to be a Guest Blogger on the new Southern California Scleroderma Foundation blog.  This would, perhaps, be a greater honor if we had some readers.  :)  So, spread the news.  There's a new blog in town.  If you haven't got your fill of scleroderma news here on KFS, head on over to the official blog for more news and information.  And if you know someone with scleroderma, please send this post along to them so that they have the link and can begin to benefit from the support of the Foundation.

I will post the biopsy results as soon as I have them.  Looking forward to good news!  Thanks for checking the blog and for all the comments--your support means the world to me.

Monday, March 15, 2010


Well, we're all looking for a little approval in life.  And while I may not get much--mostly groans at the dinner table (yes, you have to eat this), funny looks from strangers when I dress like a bag lady (sorry--but even in Southern California I've gotta protect these fingers from the cold), and a distinct lack of credit card offers of late (I can't even get pre-approved anymore)--I got my big approval.

My insurance company has approved the stem cell transplant, and I have tentative dates for my time in Chicago this summer.  We're working out the details, but it looks like I will head back in June for pre-testing, undergo mobilization and cell harvesting in July, and receive the transplant in August.

Hoping all goes well this week--I'm off to UCLA and to a San Diego pulmonologist for more approvals.

Oh, and can you believe how big the boys are getting??  That's us in Palm Desert for a tennis tournament a few weeks back.  The boys both played great and both made the semi-finals!

Thursday, March 4, 2010


After a quick trip to Chicago, the preliminary results are back.  The researcher, Dr. Burt, who is conducting the ASSIST trial has evaluated my pulmonary function testing and skin score testing and, under study protocol, I am moving into the crossover group.  

As I mentioned a few days back, the study protocol are clear for a member of the control Cytoxan group to move into the experimental stem cell transplant group.  Skin score must worsen by at least 25% or lung function must decline by an additional 10%.  Unfortunately, since my last visit in late August, my skin score has more than doubled--a worsening of 140%.  My lung function has declined about 20% since my initial Chicago evaluation.  Sadly, I more than meet criteria for the crossover to the stem cell transplant arm of the study.

So, what happens next?  I did have other testing done while I was in Chicago and I do not yet have these results.  If my cardiac function declines, I may not be able to receive the stem cell transplant.  The study is quite strict about cardiac function, and I have a heart defect (atrial septal defect) and some questionable heart thickening which could keep me from the transplant.  That will remain in question until just prior to transplant, as I will need to return to Chicago for another heart catheterization, a cardiac MRI, and additional heart stress testing before I could be cleared.  

My insurance will need to re-approve the procedure.  This takes time.  I was approved last year, but did not have the transplant, so we may have to start the process over.

I will see my local rheumatologist and my specialist at UCLA for additional opinions about my options.  The key, I think, is to make sure that reasonable options are exhausted but not wait too long.  Dr. Burt admonished me about my personal risk in waiting too long, as my heart is the big question to him.  The greater the damage to my lungs, the greater the strain on my heart, and the greater likelihood that I will not be able to receive the transplant.

He and his nurse also reviewed some of their latest transplant data, which were more mixed than the review of a year ago.  Some patients are having recurrent scleroderma problems about 2 years after transplant.  Some continue to do well.  Patients who are still "high functioning" like me are less likely to see dramatic improvement, while those who are, for example, already wheelchair bound might find themselves able to walk and drive again.  This certainly is a more dramatic response than what I can expect, which would be to hope for stabilization of lung and musculoskeletal function.

My greatest sadness at the visit was a discussion about my horseback riding.  I feel slighted still that nearly 3 years ago I was forbidden to play tennis.  Now, my doctor has said that for a period of 4-6 months at minimum after transplant I will not be able to visit a stable.  Apparently, there is a fair amount of fungus in hay, soil, and airborne at stables, which can be inhaled and create significant health problems for those with brand new immune systems.  Hence, I will be restricted from riding and visiting my horse.  I have thought a great deal about this issue today, and I think I will put Atlas up for sale.  I hate to think of him missing another year of the show circuit--he's not getting younger and he's an amazing athlete.

More than ever, I would love to hear back from you.  Let me know what you think about my options.  Let me know what you think I should do about my beautiful horse.  I'd love to hear from you.

Monday, March 1, 2010

Rituximab Shows Promise in Scleroderma!

Cover Image

Exciting news in Scleroderma land! :)  A small "proof-of-principle" study published in the February issue of Rheumatology showed exciting preliminary results.  Patients who received one year of rituximab treatment (a monoclonal antibody used for some cancer and autoimmune disease treatments) had significantly better lung function than control patients.  Check out this link for more information:

It's always exciting to see that research is being done on this nasty ol' disease, and it's because of people like you who support research that we see progress being made.  Thanks!

Speaking of progress, I am heading to Chicago for my check-up tomorrow.  My pain has been somewhat less this week, and I'm excited to get more good news.  Wish me luck!