Sean’s Burgundy Thread: Wednesdays With Murray
While I am not so much a creature of habit, my Wednesday afternoon activities over the last three years have been pretty much chiseled in stone.
At around noon on a typical Wednesday, I drop everything that I’m doing, jump into my car, drive across the Kimberling City Bridge that sits perched 30 feet above beautiful Table Rock Lake, and then wind my way through the rolling Ozark hills and picturesque hollows toward the nationally known tourist and entertainment small city of Branson, Missouri.
Upon arrival at my destination, I am normally greeted with a warm ‘SEAN!’, as if I’m entering my friendly neighborhood pub. I’m then invited to relax in one of the comfortable over-stuffed recliners that fill the venue’s main room.
The nice folks on duty kindly offer me a refreshing libation, sometimes a home-baked cookie or two, urge me to settle back, and assure me that someone will attend to me shortly. I am free to read a book, web surf courtesy of the free WiFi, tune in to my favorite program on a small flat-screen television, or do whatever it is that contents my heart.
Ah... it is always so nice being pampered on a Wednesday afternoon.
And then, like clockwork, an always engaging attendant comes over to me, smiles, we exchange some pleasantries, and then she proceeds to stick a sharp needle into my arm.
And it was going so well up to that point!
It’s true, there is some sharp-needle-sticking going on around here, but never fear, it’s all part of my Wednesday master plan.
The needle sticker, a highly skilled nurse no doubt listed on some exclusive registry of nurses, sets an I.V. and draws several vials of blood from me, the stickee. The blood is then miraculously sent via a pneumatic tube to the nearby lab for testing. I hope that the fellows in the lab prefer my blood shaken, not stirred.
Anyway, the test results are usually completed within an hour or so, or roughly the time it takes a nincompoop like me to pretend to read the latest headline article in Blood: The Journal of the American Society of Hematology.
The nurse faxes a copy of the hot-off-the-press results to my oncologists, and we call them to get a green light approval for me to receive an infusion of 2 mg of Velcade (bortezomib), a novel agent normally used to fight multiple myeloma, a cancer of the blood.
Hey! Seeing as how I just happen to have multiple myeloma, a cancer of the blood, having Velcade handy is a good thing for these Wednesday soirées.
To date, I have completed more than 150 weeks of Velcade infusions and blood tests at the Skaggs Cancer Center in Branson. That’s a lot of chemo and a lot of cookies.
How did I find myself a willing, or a not so willing, participant in this madness?
Four years ago, during Thanksgiving week of 2008, I was diagnosed with an advanced case of multiple myeloma. In the span of a couple of weeks, a simple back ache morphed into an excruciating pain that I could no longer ignore. Off to my docs I went. Sound familiar to some of you?
A couple of tests performed by my local medicos led to a hunch, which led to a referral for a diagnostic work-up at the Myeloma Institute for Research and Therapy (MIRT) in Little Rock. Never underestimate the potential power of a well-placed hunch.
After having confirmed suspicions that I, indeed, had an advanced case of myeloma, I sought second opinions. After performing due diligence and weighing my options, I consented to enroll in MIRT’s Total Therapy 4, a Phase 3 clinical trial for low-risk myeloma patients.
I temporarily moved to Little Rock from December of 2008 to October of 2009 and began the Total Therapy 4 clinical trial, which included an induction round of chemotherapy, followed by stem cell collection, followed by another round of induction chemotherapy, and then tandem autologous stem cell transplants (two back-to-back transplants using my own stem cells), and finally, two rounds of consolidation chemotherapy. While I was there, I also underwent three kyphoplasty surgeries to repair damaged vertebrae. Many MIRT patients have taken similar paths.
In periods when I was feeling better, I was able to make a couple of short trips back home. During the visit between my stem cell transplants, I was hospitalized for several days when my body, without permission, conspired with thalidomide (Thalomid) to manufacture several potentially deadly blood clots and pulmonary emboli. Bad body, bad!
A filter was placed in my inferior vena cava to prevent future blood clots from traveling to my heart. I was then introduced to the wonders of blood-thinning Lovenox (enoxaparin) shots delivered in the stomach. Trying to think positively, I was sort of grateful that dexamethasone (Decadron) helped make my stomach an easier target to hit. Some of you know what I mean.
In mid November of 2009 I moved back home to Missouri and began maintenance chemotherapy infusions on, you guessed it, Wednesday afternoons.
My maintenance chemotherapy regimen, VRD, uses the three drug combination of Velcade, Revlimid (lenalidomide), and dexamethasone.
The Velcade is infused once per week, dexamethasone tablets are taken on the day of the Velcade infusion, and Revlimid pills are taken on a 28 day cycle of 21 days on and 7 days off.
My side effects have not been too severe and rather predictable. I have experienced lowered red blood cell counts with the accompanying anemia, lowered white blood cell counts resulting in numerous colds and bouts with the flu, and low platelet counts typically hovering between 80,000 and 110,000 per microliter, significantly shy of normal platelet counts which start at 150,000 per microliter.
The dex has caused weight gain (do your friends call you Moon Face?), hot- and cold-running mood swings, and many sleepless nights.
I have also experienced mild to occasionally moderate peripheral neuropathy (pain, tingling, and loss of sensation) in my feet and hands, most likely the result of Velcade use. It was much better during my third year (not sure why, the dosage stayed the same) so I didn’t entertain the thought of switching to subcutaneous Velcade. Given worse symptoms, I wouldn’t hesitate to go the subcutaneous route, which is supposed to cut down on the occurrence of severe peripheral neuropathy.
In the three years of maintenance therapy, I have learned to fist bump, kiss no babies or strangers or strange babies, shave and brush my teeth carefully, and to always have tissues on hand for my perpetually runny nose. My family has learned to mark reminders of impending ‘Tyrannosaurus Dex Daddy Days’ on the family calendar, and I’ve learned to steal a nap when I am able. My ongoing bone issues remind me that I am no longer unbreakable.
Just this last week, I went back to Little Rock for a scheduled six-month check-up. An MRI (my 14th), a PET Scan (my 10th), bone biopsy and bone marrow aspirations (my 17th of each), and blood and urine tests (too many too count!) all revealed no monoclonal proteins and no active lesions.
I am fortunate to have been able to sustain a complete response since my first autologous stem cell transplant in February of 2009 – a total of nearly 46 months.
But my favorite outcome of the trip is that the main body of my four-year Total Therapy 4 clinical trial is finished!
For the time being, I will no longer be taking myeloma chemotherapy drugs; e.g., Velcade, Revlimid, and dex. Yay! I am looking forward to shaking off the side effects of taking those medications. Those of you savvy in all things myeloma know that this is a big, big deal.
My doctors and I will monitor my progress through monthly blood tests and bi-monthly urine tests. In six months, I’ll go back to Little Rock for another close evaluation.
I pray that I am able to sustain this remission for many more months and years to come.
I must note that several folks out there have already been willing to point out to me that relapse is a real possibility and that a cure is not attainable. I know the realities. To you killjoys – back off! Let me enjoy my honeymoon! Keep your negative thoughts to yourself. Sheesh...
If I am granted even a handful of days during which I can completely forget about multiple myeloma, enjoy a meal that tastes the way it’s supposed to taste, get a good night’s sleep, march up the hill with an energy long forgotten, or not have my nine-year-old daughter worriedly ask, ‘How do you feel today, Daddy?’ – then I will be grateful.
In the meantime, thanks to God, the love and support of my family and friends, the hard work of the medical pros at MIRT and Skaggs, and my many myeloma friends, I’m still raising a ruckus. Let’s all agree to continue to conquer multiple myeloma.
And now I have to figure out what to do with all of those new-found Wednesday afternoons! Wish me luck!
Be well 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
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HOORAY Mr. SEAN !
Wow, Sean..you made it through all of your extensive treatments. I wish you all the best in the future, and hope you don't need to go back on any myeloma treatments for a long, long time. If I had had the same diagnosis twenty years ago, when my children were in elementary school, I think I just would have been too depressed to write...let alone have a humorous take on life as a patient. Hope you keep on writing your columns to cheer us up!
Hey, congrats on making it through the four years!!! That is truly awesome. Hope you will be celebrating in appropriate fashion! Best wishes for a long, happy, and myeloma-free future.
What a lovely Christmas present! Congratulations!!!!
Lyn
Awesome. Keep it up! P.S. I know what you mean about the belly fat anti-coagulant shots. I do a daily Fragmin....it's like Lovenox...what a pain in the a.. literally!!! Terry L.
Congratulations Sean, that is a huge milestone. Enjoy your drug free holiday. Hopefully it will be a long , long time or forever!
CONGRATULATIONS SEAN!!!!! YEAH--no more chemo! So happy for you! As a MIRT patient who has sustained a complete remission for over three years, I believe their research indicates that you have a solid 85% plus chance that your myeloma will NEVER return. The research study from India last month was very interesting. The study said if your albumin level was above a certain number and you sustained a complete remission after transplantation, you had a 17 year median chance of survival. (I checked mine out and it was above and I went into remission after my stem cell harvest.) Your odds are now excellent. The only suggestion I have is for you to consider trying high doses of folic acid, B12 (under the tongue from GNC most absorb-able) and B6 (I do six 1000mg pils of folic acid, 100mg B6 and 2000 of B12 daily). This is the formula for Metanex, a drug that helps neuropathy. I have been taking it for over a year and have minimal neuropathy in hands and not too bad in feet. It might help you recover. Please keep us posted on how much better you feel:) It will give me something to look forward to:) I reduced my velcade to the lowest theraputic dose and discontinued Thalidomide due to muscle and joint pain. Like you, still in complete remission. Hate the steroids. I am so very very happy for you. You have fought a very hard fight and I believe you have won.
Sean, way to go! I'm so happy for you! I got some good news the other day- still in remission! So my Wednesday's are for appointments as well! Two great minds ran together? I go once a month for Zemetia infusions and Revlimid refills. But I am finally on the maintaince dose of 15 mg. Not without side effects, rash, itching, no sense of smell or taste. Truth be told, I'm jelous!! But anyone that has done and gone through meyloma, like you have deserve the good things finishing trial brings. I am just starting my journey, but since I found the Beacon, I feel I can face anything!
My best wishes for you and your family. Be happy!
Mary
P.s. I got my bracelets! Thank you again .
Sean,
What a battle! I am so happy for you. I wish that you can stay off the meds indefinetly.
Good luck!
Ron
Congrats Sean!
I've just finished 4 months of RVD (my first chemo) with a CR and thought that was a big deal....I can't imagine doing 36 months of chemo maintenance even if it was at a lower dose...particularly with the Velcade and PN!
Yes indeed....enjoy your chemo holiday...you've earned it!
Best,
Steve Cochran
Congratulations, Sean, on finishing the T4. I have some idea of how arduous that road must have been. My mom also goes to the MIRT; we were there a couple of weeks ago, and will be back in 6 months. May the good news and fantastic results keep on coming!
That's great Sean. I hope Dex Daddy fades into family lore, never to terrorize your homestead again.
Congratulations Sean!
My husband is in multiple myeloma remission since his auto stem cell transplant in April 2010. He went through some really rough times,but not as severe as yours. A positive attitude and trust in God does wonders! I pray that you will continue to stay in remission and spend many happy hours with your little girl.
May the Peace of Christ be with you and yours this beautiful Christmas season. And may our God continue to bless you always.
Walking with God,
Carol
Sean, thank you for sharing your story. My husband was just diagnosed at 42 with advanced myeloma. We are still reeling from the diagnosis and the brain tends to go to dark places. We are trying to remain positive and reading your story has brought me, a spouse, so much joy and hope. Thank you
Thank you for your warm wishes! I am a bit amazed at how fast four years has flown by. As you all have experienced first-hand, there are many unpredictable ups and downs during our MM travels. Quite frankly, I am grateful to still be here. I join you in celebrating each others' victories, big and small, and for the kindness and support shown in the not-so-great moments. We belong to a very special at-large community. I have no certainty about what tomorrow will bring, but I will keep praying for the success of the brilliant people that are working on the MM puzzle. Take courage shipmates, there is land in sight.
Wow... FOUR YEARS!?!? Amazing, Sean. Amazing.
Yes... by all means enjoy your holiday from meds!!!
Sean,
Cheers to you! And what a brilliantly written story of your experience! Thank you for sharing, and best of luck to you. I hope you have many, many fun filled 'Hump Days' in your future.
Congratulations, ! Enjoy your drug free holiday! Great story too!
Absolutely fanatastic news. Enjoy your drug free holiday and normal sleeping hours. Incidentally it took a couple of months for my moon face to dissapear.
Nice, uplifting article. Thanks for sharing Sean.
Thank you Sean a real success story. Two years ago I started on TT4 as well but could not tolerate the treatment. I have been on a "holiday" since January 6th. Today I started my next round of therapy. Yuck. The 11 months off was fantastic even though I was never in remission. I hope you will have many years before you have to start again. Congrats.
Wishing you all of the best things in life...you deserve them! And as for the Wednesday afternoons, volunteer! Maybe for a newly diagnosed MM patient; just listen and be a mentor to them...every Wednesday afternoon! Be grateful for what you have achieved! And give back..
Sean,
Congratulations! Wishing you all the best!
I am in my 3rd month of RVD maintenance after autologous stem cell transplants at UAMS. Thrilled to have a complete response and looking forward to being drug-free one day. (I am also thrilled to have hair again!)
The authors on this site provide much information and encouragement. Thanks for posting!
Sean,
Great story! I want to say, we miss you on Wednesdays. You bring a joy & positivity to our lives. So glad you are doing well.