Monday, April 12, 2010

Thalidomide & Filters & Clots! Oh My!

It was just about a year ago (April 09) that I found myself at home recuperating from my first autologous stem cell transplant (ASCT). Performed in Little Rock, the transplant procedure was, from my perspective, a piece of cake.  Well, maybe not like cake with frosting and sprinkles and little candles, but it wasn't too bad.

We harvested 24 million of my hematopoietic (blood) stem cells in December 08 and my UAMS transplant team transfused 6 million of those handsome, robust, hopefully over-achieving stem cells into my left arm in late February 09. I visualized them swimming toward my battle scarred bone marrow, triggering a microscopic parade filled with the deafening cheers of a gratefully rescued blood system. Hail the conquering heroes!

For the next three weeks, fighting nausea, no apetite, fevers, sleeplessness, and gastrointestinal hyjinx I'd rather not describe, I waited and watched my blood counts reach  levels sufficient for me to go home to Missouri for a much needed rest. I'd been away for nearly four months and now I was going HOME! What a great concept: Going Home! I missed my kids, my dogs, my wife, (not in that order!) my church, my everything from my normal life. I was looking forward to a couple of weeks R & R.

While I was at home, I was put on 'Bridging'  medications consisting of Thalidomide and Dexamethasone. And then it happened. One Friday evening, my left leg felt 'tight', like I couldn't 'stretch out' the muscles well enough. On Saturday it was a bit worse and on Sunday a mild pain started. By Monday morning  my leg was swelling,was warm to the touch, the pain increasing markedly. I high-tailed it to the local hospital's satellite clinic where my GP practices and he quickly asserted that 'You have a blood clot!'

A blood clot! So much for R & R! Though I'd never had one, I knew that blood clots can be extremely dangerous, even fatal. 

I was immediately admitted to the hospital and technicians performed an ultrasound STAT to assess the situation. Yep! Blood clots in my left leg, right leg and a small pulmonary embolism in my right lung. This might be bad. A doctor came in and suggested that we implant a filter in order to stop further blood clots from going to my lungs and heart and killing me.

Not killing Sean sounded like a good idea.

I remember the surgeon describing how she'd implant the filter, carefully trying to allay my fears of the 'going-through-the-groin' part. Thankfully, it doesn't mean what it sounds like. The catheter goes in through the femoral vein. Basically they snake it up through a blood vessel and deposit a metal, weirdly shaped filter into the inferior vena cava.

As she told me not to worry, that it doesn't hurt much, I began to laugh. Confused, she said everyone reacts differently in these  of kinds of situations. She assumed that I was just nervous. I went on to explain that I'd been through a lot of bone biopsies and bone marrow aspirations with nominal anesthesia, that I had a bunch of fractured vertebrae and other bones, that while pain wasn't my friend, we were kissing-cousins. All that aside, let's get the Save Sean's Life Show on the road!  The filter's implantation wasn't a big deal.

I remained in the hospital for four days and went home to my family not much worse for the wear, except that I now had to give myself Lovenox shots in the stomach every day. Fortunately I had  a big target!

As it turns out, conjecture has it that it was the drug Thalidomide that caused my blood clots. The product literature and side-effect cautions said that it might, and doggone if they weren't right. Probably.

Thalidomide has been instrumental in my Multiple Myeloma treatment. It appears that it also just about did me in. Sometime soon we'll talk about the strange history of this good news/ bad news wonder drug.

Thalidomide & Filters & Clots! Oh My!

Regards from Myelomaville!  Never Give Up!


tim's wife said...

Love your blog Sean. I don't know why, but it seems MM picks the funniest darn people to land on.
I'm curious to know what kind of
anticoagulant meds, if any, you were on while taking Thal.
Denise(who thinks laughing beats crying anyday)

Sean said...

Hi, Denise - I love your blog, too! You're right, there's plenty of time and reason to cry, but I'd rather laugh my way through this for as long as I can, say the next 30-40 years or so.

During the Induction phases I was getting 200mg of Thalidomide on Days 5-8. I was also getting 40mg SQ (a shot!) of Lovenox (an anti-coagulant) from Days 5-10, as long as my platelet count was above 30,000.

During my 'bridging' (after 2 induction phases and 1 stem cell transplant) I was taking Dex/ Thal but no blood thinners. Oh! Maybe that's why I got blood clots.

After my blood clot appearance, I was put on Lovenox shots daily and when I was through with my last consolidation chemo, I switched from Lovenox SQ to Coumadin pills, which I still take nightly. We're targeting an INR between 2-3.

Hope that answers your Q's.

I also hope that Tim's back gets to feeling better. I enjoyed your notes from Mystic. Stay well!


Nick said...

What a witty, insightful and valuable entry! It's great to read your perspective on our shared experience, my friend -- I am so glad you decided to blog, Sean!

Any chance you'll be in Little Rock in May? I'd love to see you!

Warm wishes from me and Jill!


Sean said...

Hey, Nick!

Those kind words coming from you mean more than you know. Your blog has been inspirational.You eat, breath and sleep CURE, and that's what I need to hear. You've been through some tough times, but they haven't stopped you.

I will be in LR for a check-up from May 5-7. Love to see you, too, if you're there at that time.

To all robbers: Though I'll be out of town in May, my dogs, my howitzer and worse, my tough sister-in-law, will be holding down the fort! Don't even think about it! :)

Thank you, friend!