Myeloma Mom: Greetings From A Young Myeloma Old-Timer
Hi. My name is Karen. I’m a myeloma patient, and this is my first column here at The Myeloma Beacon.
I’ve been a regular visitor to this site for a long time, and I’ve always enjoyed reading the columns written by other myeloma patients. I decided to share my own story when I realized I’ve become a myeloma old-timer.
I was diagnosed over seven years ago, when I was only 30 years old. So, I’m a myeloma youngster and an old-timer at the same time. At the time I was diagnosed, I would have given anything to hear from a myeloma old-timer – especially a youngster old-timer.
My story began in October 2005.
I went to the doctor for my annual physical, feeling perfectly fine. In fact, I had a five-month-old baby who had started sleeping through the night, so I felt great.
I gave the doctor some blood and forgot about it. With a new baby at home, I had other things on my mind.
A week later, a nurse called and said my protein level was too high. All of you myeloma patients know exactly what came next.
After a month of doctor appointments, needles, bone marrow biopsies, x-rays, and 24-hour urine testing, the results were clear. It was the Big M – multiple myeloma.
For a myeloma patient, I must admit, I’ve been incredibly fortunate. My myeloma has never been aggressive and has always responded well to treatment.
A few weeks after my official diagnosis in Kansas City, my husband and I traveled to the Mayo Clinic in Rochester, Minnesota, for a second opinion. One doctor in Kansas City – not the one I see now – wanted me to have a transplant right away. My doctor at Mayo determined that the myeloma was smoldering, and I was able to delay treatment for 18 months as my monoclonal protein (M-spike) very slowly rose.
When I became anemic and my white blood cells dropped in March 2007, I started treatment with Revlimid (lenalidomide) and dexamethasone (Decadron).
I harvested stem cells at Mayo in November 2007 and collected enough cells for three transplants. Those cells are still on ice.
After two years on Revlimid, I was able to stop all treatment for over a year. Since the summer of 2010, I’ve been back on Revlimid (without the evil dexamethasone).
I am doing well. Very well. My chubby baby has grown into a tall, skinny eight-year-old, and I’m healthy enough to run half marathons and go to rock concerts and have a 99-percent-normal life.
But I couldn’t have seen this during the dark days after my diagnosis in 2005.
As soon as I knew the doctors suspected I had myeloma, I Googled it. And Googled it. And Googled it.
What I found on the Internet at that time was scary and cold and impersonal. I read all of the statistics that said I was going to die before my daughter started preschool. I read medical articles that I could barely understand, written by scientists who seemed to view myeloma patients as bundles of cancer cells, not as actual human beings. I got fed up with the scientists.
What was it like to actually live with myeloma every day? I was desperate to know.
I gradually started coming across blogs and personal stories, and I couldn’t get enough of them. I read everything that I could: the ups, the downs, the treatments, the remissions, the relapses, and all of the life lived in between.
And I started to feel so much better. These were regular people, not bundles of cancer cells. They were living with a horrible disease, but they were still living. And a lot of the time, those lives were pretty good.
That’s why I think it’s important for all myeloma patients – young, old, smoldering, three-time transplant recipients, old-timers, newly diagnosed – to share our stories with each other.
Karen Crowley is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. Her column will be published once a month.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Good for you Karen, I'm a smoldering MM patient and when I was diagnosed 3 1/2 yrs ago I immediately got into a clinical trial at the NIH in Bethesda MD.although I was living in Las Vegas NV. As the years went by I met Mayo doctors at conferences and they were very accessible so now I live in AZ. close to the Mayo in Scottsdale..The reason for this comment, is like you I didn't settle for the first opinion and any Myeloma patient should seek out the best even if it is for a one-time consult.I'm biased towards Mayo, in MN. Drs. Kyle and Kumar in Scottsdale AZ. Drs. Stewart or Mikhael...Remember deal with the head of the horse because we all know what comes out the other end..
I've always loved your writing, Karen. Now I get to read it at the MB! Thanks for sharing your story.
Karen, I understand so well except I didn't even have the internet yet in 1994 when I was diagnosed at age 23. I had to rely on the information the doctors gave me and I too became very weary of the scientific perspective. Those early days and months were tough but as time went on I realized none of that stuff mattered anyway. I planned to live as normal as possible for as long as possible and not immerse myself in the details or the statistics. That and my innate stubbornness have served me well. I am so grateful for every day and every passing year. Best wishes for continued health to you and my fellow mm patients!
Karen,
Thanks for sharing your story. I though I was young at 50 to be diagnosed. I have two very small kids so the horror of leaving them was devastating. Shock quickly turns to strength, as parents of the young don't have time to dwell. I can also relate to the zeal of becoming a Google oncologist, only to retreat into a more sustainable search into cyber-support and testimonies. I guess we all need that search for answers, followed by a search fo a sustainable way to live. I am on my third round of VRD and so far so good. Next month, the issue of transplant comes up on the docket. So hearing your experiences and those of others is helpful. The decision around transplant options comes next month. Thanks again for sharing and inspiring me to share as a new and middle-aged patient.
I guess transplants are top of mind since I repeated the thought twice. Sorry for the tandem transplant typo.
Wow, thanks everyone for reading and commenting! I'm excited to be writing here and to be able to connect with so many patients. Tara, your story of being diagnosed in 1994 (!!!) is inspiring!
Hi Karen, Thanks so much for sharing your story here! I hope that you continue to do well. Looking after children is a really nice distraction too...must be the year end school events now! There are many younger patients who are more 'computer savvy' than us older ones and who communicate very well on the Beacon also!
Hi Karen, I really enjoyed reading your article!! Inspiring from such a young girl! I was diagnosed with smouldering myeloma in 1998, at the age of 38. In 2002, I was officially diagnosed with myeloma and the journey began. So after 3 transplants, surgeries with titanium replacement, and many chemos, I am still here and despite a few limitations, I am living a relatively normal life. I certainly wish you all the best Karen and look forward to reading your articles in the future!
I so enjoy your writing. I was diagnosed just before you in June 2005. I was 52 with a 5 th grader( older mom). I did my transplant in march 2006. It's been a total of 8 years next month. I agree, we all have a story and I, for one, have been helped and inspired by other people's stories about living with multiple myeloma. Currently, I've been off rev/ dex for nine months and doing very well. I have a small m protein showing and were in a wait and watch mode.
Thanks for sharing...
Hi Karen,
Nice article and great attitude.
When I think of those first 60-90 days, I get sad for the person who was getting that diagnosis. That person was me. Pulling up to the ONCOLOGY clinic to hear what I already knew was beyond numbing. I'll never forget walking across that parking lot, with my paperwork in hand.
That person is not me anymore. Weird but that's how I feel.
Now when I go in for my Aredia infusions every 60 days, I look forward to it. I get to see the nurses and other patients. And I get to sit in a real nice lazy boy for 2-3 hours and read, nap or chat. Donuts and coffee--and no guilt!
I feel so good now that I don't frequent this site as often. I'm sure I'll be back sooner or later, but for now...lots to do!
Thanks Karen.
Great column. great message. Thanks!
Hello just for all of you out there; here's my grandmother's story in a brief words, she was dignosed when she turned 84 yrs old; she is 91 today, she was consider a stage 4, she also was given the drugs you mention and some chemo, which almost killed her at 87yrs; believe me she has been a fighter, the doctor look at her and can't believe her, then i know what faith she has. today isn't a good day for her; she's starting to have issues with the kidneys, but i'm not complaining nor is she. Please just have faith and believe in God, i've seen him do miracles with her. I hope she inspires all of you that have MM.
That is a very inspiring story! Thank you for sharing!
Karen,
What a strong voice!
I'm a care partner who reads the Beacon vociferously for information, inspiration and a good dose of wisdom. Now I have another column to look forward to reading. Thank you!
Hi Karen,
I too have have enjoyed your writing over the past few years...will be looking forward to your columns!
Best,
Steve
p.s. -- who is this Bon Jovi person, anyway?
Thanks for that article Karen very inspiring.
I am 70 years old and was diagnosed with MM in Nov. of 2011.
At that time I started a trial of revlimid,dex and MLN 9078 (an oral updated version of Velcade with less side effects). Within a couple of months of starting the 3 drugs I went into a Very good Partial remission.
In April of 2012 The Mayo in Rochester collected and froze my stem cells.
In Dec. of 2012 I went on with only MLN9078 as maintenance once a week 3 weeks a month.
It is now June of 2013 and the cancer has disappeared from my Blood and Urine for 2 consecutive months. Next I have a bone marrow biopsy and if that is negative I am in complete response with out having had a stem cell transplant.
I feel great, walk 16 miles a week and have excellent energy. All this has happened as a result of getting on a trial drug at the Mayo clinic in Rochester.
Thanks for a great article Karen. I agree with you regarding sharing our stories - to share means we are alive.
Looking forward to your next installment.
All the best,
Libby
It is great to hear about another young veteran. I couldn't agree more about hearing from another young old-timer. When I was diagnosed at 34 everything I read was about older patients. I kept enquiring about differences for younger patients but didn't get anywhere. I even spoke with a researcher who was working on younger patients with myeloma but he changed course due to a lack of subjects. Your contribution is greatly appreciated. Much like you I find myself 7+ years later living a perfectly normal life (albeit 5 inches shorter) thanks to an auto transplant and that miracle drug, Revlimid. Thanks for the contribution and I look forward to following your column.
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page