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Sean’s Burgundy Thread: Learning To Go With The Flow!

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Published: Jun 12, 2012 3:59 pm

It was one heck of a gorgeous Sunday afternoon in the Ozarks back in the spring of 2009. In fact, it was the kind of picture-post-card day that you like to file away in your memory.

But what I had no way of knowing was that a would-be killer, lurking nearby, was ready to ruin my perfectly good day by striking out at me when I least expected it.

Having been out of state for four months of aggressive treatment for multiple myeloma, I was thrilled to be back home for a short stay to rest and recuperate after my two initial rounds of induction chemotherapy and my first stem cell transplant.  Ahead of me was another transplant, surgeries, and more chemo. Much more chemo.

On that beautiful day of nearly three years ago, several friends joined my family for a good old fashioned Easter dinner with all of the trimmings. Although the menu featured some of my favorites, my recent transplant had left me fighting nausea, fevers, and gastrointestinal gymnastics best left undescribed in polite company. I was content to nibble on some crackers and to sip ice water as I caught up on the hometown goings-on that I’d missed.

It was while sitting in my favorite lazy-Sean-boy recliner, chatting after dinner with my buddies, that the secret lurker sent me a subtle warning of things to come.

For some unknown reason, I couldn’t settle into a position where my left leg felt relaxed. It didn’t exactly hurt; it felt tight, tingly, like I just needed to stretch my leg muscles or pop that pesky knee joint that had bothered me for years.

I’m not sure if anyone noticed my antics, even though I was kicking my leg in the air like a seasoned Radio City Rockette on crack. If they did notice, they didn’t say anything. Perhaps this wasn’t out of the scope of my normal odd behavior.

More annoyed than worried, I got up, walked around, sat down, stretched, massaged my leg, got up, and sat down again.  Over and over. At that point, finding no relief, I even tried to get comfortable by forcing my foot behind my head like a circus contortionist. That they seemed to notice.

Still nothing helped ease my marginal discomfort.

After our guests left, I went to bed in the said easy chair, as my numerous unresolved vertebral, rib, and shoulder fractures and 200+ lesions made it too painful to sleep in the horizontal plane.  In deference to the dream in which my leg had mysteriously disappeared, I awoke in the middle of the night to find that not only was my leg still attached, but it was now a bit swollen, not overtly painful, just swollen.

I decided that I would go see my general practitioner in the morning to get his take on the hijinks of my wayward left leg. Maybe he could professionally coax my leg into conforming and not ruining my mini-vacation back home.

At 6:30 a.m., so as not to disturb anyone, I quietly slid out of the chair to get ready for my day.  As my left leg touched the floor, I felt a tremendous soreness radiate through my leg. My involuntary yelp woke the dog sleeping at my feet, and her yelp alerted the other dogs and set them to yelping and barking in a fashion that you’d have thought a 'Free Meat' wagon had pulled up out in front of the house.

Upon closer investigation, I noticed that my left leg was now markedly swollen and warm to the touch. I could barely walk. In a matter of a few hours, the annoying tightness was transformed into a searing pain that made me wince the same way I do when I watch American Idol.

Then and there, I decided to high-tail it to my doctor’s office. After his lightning quick examination, he proclaimed in his practiced medico vernacular, “Gosh! You have a blood clot! We need to admit you immediately. In the hospital. Can you drive?”

“Can I drive!? I know how much an ambulance costs, of course I can drive!”

After I was admitted to my local medical center, two young technicians who looked more likely to be comfortable playing shoot-em-up video games on an Xbox, administered an ultrasound imaging test to assess my situation. Eureka! Like all good video-gamers, they found the bad guys!

Blood clots it was! Otherwise known as deep vein thrombosis or DVT, blood clots like these form in a vein deep inside the lower leg or thigh. As an overachiever, I had them in both legs.  When a blood clot breaks off and travels through the bloodstream, it becomes an embolism. Wanting to try everything, I had a pulmonary embolism in my right lung, too. I was giving blood clots the college try!

The danger is that emboli can travel to the lungs, heart, brain, or other areas and cause significant damage, including strokes, heart attacks, or death.  Stop the merry-go-round now, I want to get off.

I had been prescribed the 'bridging’ medications thalidomide (Thalomid) and dexamethasone (Decadron) in order to continue my fight against myeloma while I was between stem cell transplants. I was also prescribed aspirin to help prevent blood clots.

Even though I was aware that blood clots were a possible side effect of taking thalidomide, I was still taken by surprise that this is what I was experiencing.

Shortly after the imaging test, a thoracic surgeon stopped in and suggested that I allow them to implant a filter in my inferior vena cava in order to stop any additional blood clots from traveling to and camping out in my lungs and heart, where they might potentially kill me.

I agreed to give them carte blanche access to my insides, and I wholeheartedly applauded and endorsed the fantastic idea of not letting blood clots kill me.

The surgeon explained the procedure and she tried to allay any fears I had, especially the ‘going-through-the-groin' part of the operation. Thankfully, the catheter actually goes in through the femoral vein and snakes up through a blood vessel, where the weirdly shaped metal filter is deposited into the inferior vena cava and expands to stand guard against blood clots like a brutish night club bouncer.

After she told me not to worry, that the procedure sounds worse than it is, and that it wouldn’t hurt much, she wondered why I laughed.  I told her that I’d heard that before.

And as she assured me that my nervous laughter was normal, I explained a bit about my recent medical background, that I'd endured bone biopsies and bone marrow aspirations with nominal anesthesia, lots of fractures, and that while I was no stranger to pain, I  wasn't inviting it to the family reunion, either. Someone said something about kissing cousins and she laughed even harder. Maybe she laughed because she was nervous. At that point, I didn't even know what we were talking about. Then I double-checked to make sure that she was going to, indeed, use anesthesia.

The filter was successfully placed during the brief procedure. The nurses then taught me how to give myself daily injections (in the stomach) of Lovenox (enoxaparin), an anti-coagulant. I stayed in the hospital for four days and went back home to my family not much worse for the wear, but much wiser about blood clots.

The general consensus is that it was thalidomide that caused my blood clots.  I continued using thalidomide through another stem cell transplant and two more rounds of chemotherapy.  When I started my three year maintenance chemotherapy period (126 of 156 weeks completed so far!), I was switched to warfarin (Coumadin), which is a pill. Yay! I also switched from thalidomide to Revlimid (lenalidomide) during maintenance. Revlimid, a thalidomide analog, supposedly has less severe thrombosis side effects.

What have I learned? I pay greater attention to any swelling, unusual pain, or temperature changes in my legs. I put my feet up and neither sit nor stand for too long a period.

I make sure that I move and get exercise.

I am very careful to continue using my prescribed anticoagulant, and I monitor my international normalized ratio (INR), which measures the time it takes for blood to clot. As a patient with a filter in place, I make sure that my weekly INR blood test results fall somewhere between the range of 2.0 and 3.0 units. If it doesn’t, we adjust the Coumadin.

And when I have to have a bone marrow biopsy or other invasive procedure, my physician and I carefully adjust my Coumadin dosage so that I can safely balance my need for the procedure and my need not to generate new blood clots.

As I understand it, when my maintenance chemo period ends in a few months, I will discontinue Revlimid, but I will still have to use Coumadin because the vena cava filter itself can cause blood clots.

Please make yourself aware of the possibility of getting blood clots during your myeloma treatment.  Talk with your medical team about thrombosis and embolism awareness and prevention.

Stay connected out there in Myelomaville!

Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon.

If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .

Photo of Sean Murray, monthly columnist at The Myeloma Beacon.
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10 Comments »

  • TerryH said:

    Thanks for another great column Sean. You have a real gift.

    I have always wondered what exactly happens when someone gets DVT, both in terms of the symptoms that occur and how it is dealt with. Now I know.

    Can the filter you had implanted ever be removed? I think I would rather go through another operation of some sort to have it removed than have to spend the rest of my life taking blood thinners just to make sure the filter doesn't cause problems.

  • nancy shamanna said:

    HI Sean, Thanks for all the info on blood clots, which you told us in the guise of a really funny story! Maybe we get sort of a warped sense of humour after being a patient for awhile. I am still chuckling over the 'MRI the8th' story too. HOpe not to encounter a blood clot, but did take lo-dose aspirin during my almost two years on chemo and during he ASCT time. I found I needed to take a stomach protection pill, such as Nexium, to take away the acid reflux. I was coughing for weeks due to acid reflux before we realized what was causing it!!

  • Dilip said:

    Good grief charlie brown!

  • terryl1 said:

    Great column and thanks for alerting everyone to the risks. Two months ago, while smoldering, I had two pulmonary embolisms that almost killed me and had me hospitalized for five days. Even if you have SMM, you are at risk of blood clots simply by having a malignancy, especially one involving the bone marrow. After the PE, my hemoglobin tanked and I am now in treatment at the NIH in their carfilzomib trial. My daily injection of Fragmin into my belly is a bitter reminder of just how serious blood clots can be for us whether we are in treatment or just smoldering. Terry L.

  • Jubyanne said:

    God bless you, Sean!
    And God bless us all!
    Julia Munson

  • Kathy Farr said:

    Very Informative....I have been wondering if I would know if I had a blood clot. My legs are more sensitive to the touch and bruise more easily so this is good information while I continue on maintenance Rev. Keep the articles coming!

  • suzierose said:

    Hi Sean!

    You are a real trooper with an incredible gift to convey how even the most life-threatening circumstances are manageable.

    I worry about DVT constantly and inject my Luvenox religiously.

    Your description
    "my left leg was now markedly swollen and warm to the touch. I could barely walk. In a matter of a few hours, the annoying tightness was transformed into a searing pain that made me wince" helps A LOT

    in that regard since as soon as my legs swell after walking or standing I immediately start checking, lol. I raise them and hope that the swelling is more related to DEX than a DVT....so far so good. While I have had swelling I have not experienced the pain. I did note that was the first question by my nurse when I 'suspected' (likely due to AgentD anxiety) a DVT..she asked..on a scale of ten" where would you rate your pain." I replied, well it is less than one, more of a soreness than pain. I now know that does not rise to the level of what to expect and your post confirms that.

    I also am very must aware that while Luvenox and aspirin are used prophylactically, and can prevent a clot neither one dissolves a clot once formed.

    I really appreciate how you are forthcoming and simultaneously earnest about the severity and seriousness of this particularly AE that all of us have to be vigilant about. You keep us upbeat even in the face of possible dire circumstances.

    Sending you wishes for continued good health and lots of blessings to endure whatever comes along with our MM journey.

  • Sean Murray (author) said:

    Sorry for the delayed response - I've been at a family wedding and mini-vacation and purposely dis-connected myself for a few days!

    @Julia- God bless you, too! thanks!

    @ Terry H - hi! Apparently it isn't an easy task to remove the Cordis Trapese filter, it can be done, but not as easily as it was put in. It is described as a 'permanent' filter. My new MM doc said that I'd have to stay on the 'rat poison' (his words for coumadin) for the next 50 years of my life (my words!).

    @ Nancy and @ Kathy- I hope that you don't have to meet blood clots up-close-and-personal, too. Not very fun! Thanks for writing.

    @ terryl1 - yikes! Your blood clot story makes mine look like a walk in the park. All my best as you move forward.

    @ suzierose - thanks for sharing your wisdom, always nice to hear from you. Best wishes in your journey, too!

    @ dilip - was your Charlie Brown reference because of my story or my picture? :-) All my best.

    Thanks to the 20 or so folks for sending me an e-mail with kind words and personal experiences. Hang in there!

    Sean

  • Dotty said:

    Greetings:
    Most days I read the articles re: MM. What I really would like to see is more articles and treatments from people who do NOT receive the transplants who have MM.
    My husband has MM and from this side of the picture I could probably write a short story but do not have the talent to do so.
    Just thought there must be folks out there in our shoes. I understand what many of you are going through trust me when I say that!
    So much of what you describe we have been through and have MM friends who have have the transplants also. Would be great to have more news by those who are surviving without the transplant re: diag. treatments, symptoms, facilities and more. We are going on year 4 but only 3 since diag. Thanks, Dotty

  • suzierose said:

    Hi Dotty

    you write:
    "What I really would like to see is more articles and treatments from people who do NOT receive the transplants who have M"

    What you may need to have clarity on is that transplants (SCT), unless ALLO, are not therapy and not essential.

    You do not need a SCT unless you agree to high dose chemotherapy (HDT) which is chemotherapeutic doses that are life-limiting. The SCT saves you from the side effects (mortality) of the HDT...SCT are not therapy. They are how the adverse effects of HDT are treated.

    IOW's they are salvage. The HDT is so toxic to life that you MUST have the SCT to survive.

    I am a patient like you, I will not submit to the HDT that necessitates the SCT.

    Many patients do survive with HDT, but it depends on their patient profile, (high vs low risk) age and the QOL they seek.

    Sounds like you are doing great with going on year 4.

    Just remember, you CHOOSE HDT in order to get a SCT. Is that for you or hubby? Only you and he know. Know your choices, be informed and choose what works best for the QOL you seek.

    Wishing you all the best,
    suzierose