Pat’s Place: Holiday Cheer
Those of you who have been following my story remember how carefully my wife Pattie and I weighed the pros and cons before deciding I would proceed with a salvage autologous stem cell transplant.
The transplant this summer worked so well that my myeloma specialist strongly recommended that we repeat it this fall.
There was just a touch of measurable multiple myeloma left. Why not stick with a therapy that was working? Hit my myeloma hard while it’s down.
Once again, we agreed with his logic. Just as I began to recover from the first one, I headed back to complete the tandem transplant.
God knows it hasn’t been easy. In the last six months I’ve twice endured exposure to four different types of myeloma therapy, leaving me without a working bone marrow for weeks at a time. Nausea, diarrhea, neutropenia, anemia; a month or more away from home this summer and again in the fall. Auto transplants may be relatively safe, but I can’t imagine many things more unpleasant to live through.
Soon after my first transplant this summer, I developed a painful stomach infection that magnified the challenges of recovery. Earlier this month, I developed a severe case of an infamous intestinal bacteria known as Clostridium difficile, more commonly called C. diff. It left me dehydrated and running a fever of 103 degrees Fahrenheit (39.4 Celsius).
Barely able to stand, I staggered to the emergency room at the hospital where I was supposed to start a series of post-transplant tests that morning.
I was immediately admitted and rushed up to the intensive care unit (ICU). My resting heart rate: an alarming 150 beats a minute!
My diarrhea was brutal and nonstop. When I could, I slept – until the next time I scrambled to the commode.
A few days later I was transferred to the bone marrow transplant unit. As they wheeled me down the hall, I was emotionally crushed. I felt like I was returning to the scene of a crime.
Don’t get me wrong. The staff there is amazing. But great staff or not, nothing can ease the unpleasant memories of recovering from not one but two stem cell transplants. I had hoped I was done with all of that.
There is a powerful antibiotic often used to fight back C. diff called vancomycin. With the help of an ongoing infusion of IV fluids, electrolytes, and the vancomycin, I began to feel better as the days went on.
Still, I was exhausted. After all, it hadn’t been long since millions of my stem cells had been given back to me in late October. And I still needed to undergo a brain MRI and PET scan to help my doctor know how well the second stem cell transplant had worked.
The news was good. My brain MRI showed that the lesion at the base of my skull was myeloma free and shrinking. My M-spike had dropped to zero, with only “a faint monoclonal protein present in the gamma region that is too faint to quantify.”
My doctor assured me even that would be gone in a matter of weeks. But what did the latest PET scan show?
With a big smile on his face, my doctor pronounced me “Myeloma free!”
It was a Christmas miracle! Before the ordeal began, one specialist had given me “a year and maybe a few months” to live.
In the last six months I had lost my hair twice, endured ongoing nausea, diarrhea, a severe stomach infection, and this latest GI infection, which landed me in the ICU.
I had spent ten weeks away from home and lost 10 precious pounds I couldn’t spare. Most of the muscle in my shoulders, back, arms, legs is gone. In other words, I would need to start building my body up again from scratch.
There aren’t any guarantees for how long my myeloma will stay away. Knowing that, my doctor has set up an aggressive, three-drug consolidation therapy program set to start after the first of the year.
But none of that matters. All the pain, discomfort, and time away is already a fading memory. Our gamble paid off: I’m home and I’m myeloma free.
Just in time for Christmas.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Wishing you a very happy new year - you've earned it!
Pat,
Wow! What an ordeal! What this disease puts us through is disheartening, but it is also character building. I'm happy to see that your outcome is optimistic after so much pain and suffering. My best wishes to you and your wife for a Merry Christmas and a New Year of joy and good health.
Best Wishes,
Larry
So happy for you and Patty, have a wonderful holiday season. Life is great, even greater when you can beat the odds.
Merry Christmas Pat (and I truly mean that). You are one heckuva fighter.
Great news Pat. Last year I had two tandem ASCTs following 16 weeks of maintenance CyBorD. I am now in complete remission for 1 year. Unlike your experience, my two ASCTs went off without any complications. Feeling great, numbers are awesome, back to working full time since I am way too young for Medicare. And I keep reading of new drugs and therapies that are getting approved just in case I might need them someday. It's good to hear about these success stories to give us all hope. Merry Christmas.
We are so glad you are recovering and that memories of the special hell you guys have endured are fading. Wishing you a peaceful and happy holiday.
You drew one card and hit that inside straight, beating myeloma's three queens and c.diff's two pair. It happens! You proved it! Now you have the joy of walking in the moist sand along the beach with a one pound weight in each hand; increasing the weight you carry as the weeks go by, building up those shoulders and legs back to the size and strength before myeloma came into your game. Nothing is better than this. Celebrate your return to health.
Pat, that outstanding news. I hope you stay myeloma free for many years to come.
I enjoy your columns!!
One of the reader comments called what I've gone through "an ordeal." Got that right, Larry! We're a lot tougher than most of us know. It helps that – at least for now – it's working. Sounds like Randy is doing well after his tandem and CyBorD consolidation. But I'm guessing his therapy was up front, or at least closer to the start of his myeloma journey. Trying a tandem after over eight years was a bit like throwing a Hail Mary. But I don't think my results were lucky or remarkable. So many patients are discouraged from trying something like this late in the game, who knows how many could end up with similar results? But no question it's hard; with a lot of toxicity. Not for the faint of heart!
Pat,
Excellent news for you. This will be an extra special holiday time for you and your wife. Enjoy!
Best to you in 2016.
Congratulations Pat and thank you for sharing a very honest and compelling account of your very challenging, but amazingly successful year. Not an emotional dimension untouched, and the leading edge of treatment approaches undertaken for sure – and thankfully achieving the desired results! Thanks so much for sharing your inspiration.
Best wishes for a wonderful holiday as well as a prosperous and healthy New Year to you, Patty, and all seeking to prevail against myeloma!
Pat, you are the ultimate myeloma warrior! I wish you a long remission. Heck maybe a cure! Thanks for all you do! Have a wonderful and healthy new year!
Thanks so much, Sylvia, Walter and other readers and friends. Pattie and I are ecstatic about the news that my lesions are healing and myeloma free. Now if I could spend less time on the toilet and more time in the kitchen. I'm cooking Friday!
I too had a SCT at the end of May and you are right, you really go through hell, but the hell is short lived we just have to remember it may be well worth it in the and it was for me as well. I was sick to my stomach for about 2 months and soiled my pants many times a day. Thought I could not stand it any longer, but most of us are far stronger than we think and right now the SCT is but a distant memory and I too am in remission. It's that every 3 month blood work that scares me. Hope I'm in remission for a long time to come. My cousin's husband was in stage III myeloma and everyone thought for sure he would not make it. He has the money so that was no object to finding wellness so he went to the Mayo Clinic and had the SCT and he is on no maintenance drugs and is over 10 years myeloma free, so that gives so many of us hope and fighting chance to be in remission for a long time. Good luck to you Pat. My prayers will always be with you that your remission will last a long long time.
Dear Pat
I have followed you through the years, and your story is eerily similar to mine. Although I had my two SCT's 16 months apart (as you had a tandem). I am now hoping to participate in an immunotherapy as my M-spike and kappa begin to rise again. I have agreed with a lot of your sentiment and thought process over the years. You are a warrior. God Bless and Merry Christmas!
EP
Super article, Pat, and brilliantly written as usual. You describe so expertly the effects a BMT has on the body and the side effects that we have all learnt to fear and loathe in equal measure. I'm in awe that you have done back-to-back transplants. You're a brave man and great to hear you're doing so well now.
Looking forward to your next article ! Sásta Nollag (Happy Christmas in Irish).
Thanks and best wishes.
Neal.
What a long strange trip its been (quoting from the Grateful Dead song "Trucking"). Your myeloma journey has seen almost everything: from avoiding a transplant that worked for several years; to a less-than-successful ASCT on first relapse; to struggles with various drug treatments and side effects, to finally deciding on your salvage double transplant treatment. I know it doesn't end there as there is a pretty robust maintenance protocol in store for you.
Pat, your journey and reporting have taught all of us how this is a marathon and we appreciate all you have done for us.
If there is one thing about myeloma that's a sure thing, its that we all respond to different therapies in different ways. I hear that its a "homogeneous" disease. All I know is what works for one may not work for someone else. That said, hearing from so many with stories similar to mine doesn't surprise me. Lynne, thanks for sharing how it took so long for your GI tract to heal. It will help me be more patient. Wasn't any fun, was it? Emil and Ron, sorry relapse has become a part of your lives like it has mine. An emotional roller coaster!
Merry Christmas Pat and Pattie!
Congratulations on being myeloma free! We have eagerly followed your progress and are delighted to read that, despite all the suffering, everything has worked out so well. My husband went through an autologous stem cell transplant on August 31 and appears to be myeloma free, too. Like you, we do not know how long he will be free of myeloma but his doctor has recommended a maintenance regimen of Revlimid, elotuzumab and dexamethasone. We are anxious to see if the new drug, a monoclonal antibody, will make a difference. Do you know what drugs you will be on?
Pat – Great to hear you have achieved remission and thank you for another inspiring article. Happy Holidays!!
A very Merry Christmas Pat! Such exceptionally good news to hear and lifts my hopes.
Becky
Thanks for the support, Bob and "Lattecat." Patty, I'll be on an unusual schedule; Kyprolis once a week infusion (usually twice in the same week every other week) and pomalidomide 3 mg and 40 mg dex once a week. Consolidation not maintenance. Hopefully lighter combo and dosing for maintenance if I do well after four months. Not looking forward to it, but part of the "let's keep the myeloma down and out" strategy.
Interesting to hear about the C. diff bouts. Haven't read this mentioned much (no bathroom humor there!).
Long story short, after my ASCT I had pneumonia followed quickly by C. diff. This turned into toxic megacolon, the worst case scenario. Three weeks of ICU, then 2 in recovery and 3 in rehab. I have had three recurrences in two years. Turns out the stuff gets its kicks out of using antibiotics! Who knew?
I've heard that C. diff can play havoc with one's colon. What a nightmare! I can relate; I'll be extra careful to watch for relapse. Thanks for the cautionary tale!
So so happy for you, Mr. Killingsworth! Wish you many many many more myeloma free days, months, years!!! Happy new year!! Knock on wood!
Upasana, I'm looking forward to some time where I'm not looking back over my shoulder.
You are a fighter and an inspiration for us, Pat!! Blessings!
May your wish come true Mr. Killingsworth.
So happy to hear about your success Pat. Been praying for you ever since we met at Moffitt in 2013. You and Pattie have been through so much. If anyone deserves a reprieve it is you. Blessings on you and Pattie and best wishes for a strong and healthy new year.
Thanks everyone. Happy New Year!
From your welcoming smile, from the way you write, from your commitment to others with cancer, I can tell that you are a very nice person; you are what we Italians would call “simpatico”! So why so much suffering? I know, there is no answer to this question!
I only had one transplant and it was awful. A friend of mine who had hers around the same time, and I, agreed that it felt like being run over by a train! Neither of us wanted to get dressed and leave the apartment for almost one month, and I did not even wear eyeglasses for many days. I did not really want to see – just rest, eat, and recover.
In the last few months I had it rough too, now I am much better again. I spent a quiet Christmas, and on New Year’s night I fell asleep on the couch at 10 o’ clock after eating very well with a couple of British friends we had invited. I had warned them that I would not be able to stay awake 'till midnight, and as they had seen me when I was in bad shape, they accepted it with ease.
Being able to function, being pain free is wonderful. Who cares about excitement and celebrations! I think that you might feel the same way in this period. The news about you remission is fantastic and I hope that after the consolidation you will be able to take lower doses of drugs. I am not in remission yet, but I responded very well to Revlimid and I take 10 milligram pills, which do not bother me, plus the usual dex, which gives the usual insomnia and hyper verbalization!
I wish you a happy new year, one of energy and well-being.
Well said, Annamaria! I agree. Just being able to get around and do normal things without much pain or discomfort is celebration enough! We're just happy to be alive, right? Happy New Year!
Dear Pat,
Thanks for a wonderful column with a magical ending. Please keep writing, since you captured the misery of diarrhea, and than infection. I have experienced both of these, but not as severe as your last episode.
So happy new year, and here's to a long remission.
Maureen
I'm glad you enjoy my writing, Maureen! A long remission sounds wonderful! I could use a break. Happy New Year!
You give me hope for my husband. Thank you for writing about your experiences.
Glad I can help! Helps keep me going!