Mohr’s Myeloma Musings: From "Watch And Wait" To "Uncertain Certainty"
Hello, my name is Steve Mohr. I am 57 years old, and I was diagnosed with monoclonal gammopathy of undetermined significance (MGUS) in December of 2011, which was quickly revised to a diagnosis of multiple myeloma in April of 2012.
After reading this website almost daily since my initial diagnosis, I feel that, perhaps like every columnist who writes for The Beacon, I may be able to offer a helpful perspective to others with multiple myeloma, especially those newly diagnosed with the disease, and those about to undergo treatment.
As was the case for many of the columnists and Beacon readers, my diagnosis came as a complete surprise. And like many, I had never heard of the disease.
It all began in September of 2011, when I started to experience moderate pain through my hips and pelvic region after being on my feet for long periods of time. When the pain continued for several weeks, I finally saw my family doctor in November that same year. I fully expected him to tell me that being a three-sport athlete through high school and playing college football had caught up with me, and that arthritis had set in.
I was somewhat taken aback, but not overly concerned, when an MRI revealed a lesion on my left pelvic area. My doctor referred me to the James Cancer Center (commonly referred to as The James) in Columbus, Ohio, and assured me he just wanted to be sure that it was insignificant.
Additional tests were run at The James. I met with an orthopedic cancer specialist in December, who told me that the test results indicated that I had the myeloma precursor disease MGUS. I was told that it could linger for years and possibly never materialize into active multiple myeloma.
The orthopedic cancer specialist did not think the pain I was experiencing was in any way associated with MGUS or multiple myeloma. Instead, he gave me an exercise regimen to work on, and he planned to monitor my status with tests every three months.
Three months later, in March 2012, I returned for my first check-up. I was still experiencing the pain in my legs and pelvic area, though it was not as pronounced as before. This time, I met with an oncologist. He was bothered by the fact that I was still experiencing pain.
A couple of weeks later, he unexpectedly called me and said that he wanted to get to the bottom of my continuing pain (he’s persistent!).
He ordered a bone biopsy, and on April 20, 2012, I received "The Call.”
The lesion on my left hip was cancerous, identified as a plasmacytoma. A follow-up bone marrow biopsy confirmed that I had stage I multiple myeloma.
My doctor suggested taking an aggressive approach initially to eradicate the plasmacytoma. I remember him telling me that we were going to “radiate the hell” out of it.
I was surprised at how "routine" the 25 radiation treatments were. They were administered over a five-week period in May and June of 2012, and were determined to be successful in killing the tumor.
At the first three-month check-up post radiation treatment, my lab results showed that my M-spike had increased, despite the successful treatment of the plasmacytoma. It continued to rise over the next three months.
At that point, in January 2013, my doctor suggested that we should consider treatment.
However, we decided to continue to watch and wait, even though this approach went against my nature of proactively – and aggressively – tackling problems head on.
Numerous factors led to this decision.
First of all, the fact that new treatments were looming on the horizon gave cause for delaying treatment.
Secondly, I looked and felt good, and apart from occasional mild fatigue, my quality of life had not changed since my diagnosis. The knowledge that the side effects of treatment would definitely impact my quality of life could not be overlooked.
Most importantly, my two children would be entering their senior years of high school and college, and I did not want the burden of their dad undergoing life-altering treatment hanging over their heads during this special year.
And yet I must admit that, as convinced as I was that to continue watching and waiting was the best course of action, I had moments of doubt.
On more than one occasion, I told my wife, "This just doesn't make sense. I have an incurable cancer and thus, in all likelihood, a terminal condition. My numbers are getting worse despite 25 radiation treatments on the plasmacytoma. There are cancer cells percolating in my body, and we are going to ‘watch and wait’?"
And, on numerous occasions, I had tried to explain to family and friends that yes, I have an incurable cancer, but no, I was not undergoing treatment and that we were "watching and waiting." One friend seriously asked, "Watching and waiting for what ... death?"
Nevertheless, we had been watching and waiting for 16 months, and I am glad we did.
I also want to make one thing very clear: I trust my doctor completely. I owe my very survival to him. Without his persistent and caring personal approach to first find out what was wrong with me and then blessing me with his expertise and care, who knows what my condition would be today.
Watching and waiting has ended, as I started treatment last October. My check-up in September revealed numerous new lesions on both hips, my femur, and on my fourth vertebra.
So, why am I glad that we watched and waited?
Over the 16 months, I have been able to learn about this disease. While I will never be one who is able to discuss this disease on even a fundamental basis like other contributors – the science part of living with this disease just doesn't interest me – I am now much more aware of the treatment options that exist post watching and waiting. I have had the opportunity to talk to others who have fought this terrible disease.
In short, because we watched and waited, I am much better prepared to face treatment and all that it entails.
The time during these 16 months that I was able to spend with my son, working with him to earn a starting position on one of the finest football programs in the state, likely would not have been possible had I been in treatment -- especially had I undergone a stem cell transplant, which is now planned for later this year.
Had we not watched and waited, I would not have been able to return to my passion of coaching basketball.
And, finally, my efforts to live under a new credo of "loving deeper, speaking softer, and being the friend a friend would love to have" would have been sorely tested with the change in the quality of life that would have occurred had I started treatment in April 2012.
"Watch and wait" is now replaced with "uncertain certainty."
The certainty of finally treating this disease is, surprisingly, a welcome relief. No more living from three-month check-up to three-month check-up and the anxiety that goes with waiting for test results.
However, the certainty of action and accompanying relief is tempered by uncertainty and many questions.
Will the treatment end the constant bone pain that I am now experiencing? What side effects will I experience during treatment: constipation or diarrhea, muscle cramps or rash, fatigue or neuropathy, or, worst of all, secondary cancers? As one who has suffered through insomnia for decades, how will I handle dexamethasone (Decadron)?
Will I go into remission, and if so, how long will it take to get there, and what form of remission will it be? How will treatment affect my ability to work? Most importantly, how will my family be affected by all that is involved in treatment?
The coming months will certainly come with many more questions and much uncertainty. But I am happy with where I am now.
As uncertain as this certain treatment plan may be, and as convinced as I am that watching and waiting was the best course of action to pursue, in a perverse sort of way, I prefer the uncertain certainty of treatment to watchful waiting.
I look forward to sharing my perspectives on these experiences with the readers of The Myeloma Beacon.
Steve Mohr is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His 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 .
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- Living For Lamingtons: Do I Have To Be Relentlessly Positive To Live With Multiple Myeloma?
- Living For Lamingtons: Learning About Depression In Unexpected Ways
Steve,
Wonderful introduction! I can't wait to read your next posts and perspectives as you go through this as a newly treated patient. Wishing you all the best.
With my 32 year old daughter there could be no watching & waiting . At the time of diagnoses we were told 70% of her blood was taken over by myeloma cells. Like you we had never heard of the disease. She started Velcade & dex the day after diagnosis & did that for 4 months. Then she was in complete remission but because she was young she decided to hit it aggressively & had a stem cell transplant. 2 years out from diagnosis now she is in complete remission with Revilmid maintenance & Zometa infusions for her bones. 2012 was a horrific year full of treatment but now she is glad she hit it aggressively. Good luck in your journey.
Hi Steve, thanks for your column and looking forward to others. The "watch and wait" protocol is bizarre, especially for those at high risk of progression. I did it for about eight months till I progressed to active myeloma with a vengeance.
Thanks so much for your story. I am still watchful waiting.
I Thank God that I have only gone from MGUS to smoldering, but my gammas have gotten close. I now get regular IVIG treatment and suffer from severe neuropathy, but I am glad to wait.
Hi Steve, Thanks for sharing your journey with MM in such an interesting way. I am sorry that you have had to deal with this cancer also, but now there are so many better treatments than there were even ten years ago, that I suppose one would feel a bit more comfortable with 'watching and waiting'. Also, it was good to hear about your radiation treatments. I have never had any, and sometimes wonder just what they would be like also. As well as there being many MGUS and SMM patients who are watching and waiting, there are also many patients such as myself who are watching and waiting for a relapse which would require starting treatment again! So you were certainly not alone in that regard! Best wishes to you and your family!
Best of luck to you, Steve. You made a lot of points in your column that resonated with me. Especially the "welcome relief" of finally treating the disease. I was in watch and wait mode for 3 years with smoldering myeloma, and then began treatment last January. In many ways the past year has been easier for me mentally than the prior years because now we are actually dealing with the disease. I hope it is that way for you too, and I wish you all the best in your treatment.
I too am watching and waiting. Though my numbers are going up, they are going up slowly. I will be forever grateful for regular cholesterol checks because that's how I was diagnosed with MGUS. Great story. All the best and I will be following your reports. Thanks.
Multibilly,
Thank you for your kind comments. I always enjoy reading your comments and am really impressed by your knowledge of this disease. I hope that eventually I can discuss the disease at a level that you do.
Terri J,
I am glad that your daughter's decision to take an aggressive approach has paid off. My personality is such that I tend to take a proactive, aggressive approach to tackling problems I encounter, which is why watching and waiting was difficult for me at times. I hope that your daughter's good fortunes continue. With a stem cell transplant planned for June, I am buoyed by success stories like your daughter's.
Excellent column Steve. You have so succinctly peeled back the many complex layers in understanding how to live and deal with myeloma. I really appreciate your heartfelt candor. My husband was diagnosed exactly one year ago, and after his nearly 9 months of induction treatment (Velcade & dex) he achieved a "very good partial remission." My husband did not want to go through a stem cell transplant (a healthy 70 year old) and also decided to take some time off from maintenance treatment. His doctor was a bit concerned about doing this, but each month he is checked and continues to do well. My point is that everyone has to decide the path of treatment to take, as well as the timing. My husband wanted to give his body a break from the chemo. When the numbers start to relapse, he will resume treatment.
Thanks for your column Steve, and I look forward to more!
Hi Nancy,
I always enjoy reading your columns and have never failed to take something positive away from them. Radiation was really the most underwhelming part of all that I have gone through. The actual treatments only lasted about 7 minutes each, and the only side effect I had was some moderate fatigue about 2 weeks after my final radiation treatment. I guess to a certain degree we are all watching and waiting, even when undergoing treatment, as we still live from test to test, hoping for remission or for no relapse.
Hi Steve,
I was diagnosed with myeloma back in 2008. Treatment was a 5 day a week affair, 3 days kidney dialysis, 2 half days chemotheraphy. A physically and mentally draining routine. After 8 months of slow and successful treatment with Velcade and dex, dialysis was discontinued. With kidneys now at half capacity, low dose Revlimid replaced the Velcade.
A much appreciated "stem cell transplant" followed. It took about 6 months for my energy levels to get back up to speed and another biopsy confirmed I could leave the Revlimid Dex and Zometa behind.
That was 4 years ago and I'm now 73. I walk at least 3 miles a day (BMI 24) and get a complete blood check and a chat with my consultant every 4 months or so. I'm currently in remission and medication free.
So far my problems are only minor and I don't let them get in the way, having enjoyed a 12 day "road trip" from Las Vegas to Denver 8 months ago without any complications health wise. This year a few trips are already in the pipeline.
I believe that it is important with MM to always have something to look forward to, such as a movie, dining experience with wife and or family, day out, small trip, big trip etc ... Fill your diary! For me life is too short and there are so many things to see and do that I'm glad I started my bucket list in my early teens. I really enjoy the relative freedom I have living with myeloma because dialysis is a really "big ball and chain" and I don't ever want to be there again!
Best of luck Steve.
One point that you make that hits home for me is how "relieving" it is to make a decision and move forward. I know for myself, after months of induction treatment and many hours weighing all of the options, once I decided to proceed to transplant it was a relief. Now that I start harvest next week with transplant the following week, I am experiencing a mixture of fear and anticipation. Like you I tend to be aggressive, my attitude being you cannot finish until you start.
I only wish I could start today rather than waiting the weekend.
Thanks for this Steve. I was diagnosed in September 2013 with stage 2 MM and am just finishing up induction treatment. My stem cell transplant is scheduled for early March. Like everyone I guess this came as a complete surprise to me at 53. I went in to emergency for severe rib and back pain (escalated rapidly on a golf course) and 14 hours later I was diagnosed. Incredibly good care, unbelievable shock.
Like Andrew, I struggled with the decision to undergo stem cell transplant. The induction treatment has gone well and I'm feeling better which makes it all the tougher to decide to undergo this drastic procedure. Like you I thought, with all the advances they seem to be making in treatment, maybe if I harvest now and wait and see, and just go on some kind of maintenance, I can spare my body that massive dose of chemo before transplant and benefit from some breakthrough around the corner. But all indicators are it's the best chance for a solid remission at the moment and the moment is all we have. So here I go!
Best wishes to everyone here and may we all benefit from some breakthrough around the corner...
Steve, I was touched by your saying, "I guess to a certain degree we are all watching and waiting, even when undergoing treatment, as we still live from test to test, hoping for remission or for no relapse." I attend meetings at an excellent myeloma support group, and it means so much to have companions on this road of watching and waiting. Thank you for sharing this journey with all of us. I wish you well.
I would like to suggest another approach to "watching and waiting". That is to "watch and do something". In my case this has worked for me for the last 15 years. I was diagnosed with IgA Lambda Multiple Myeloma 15 years ago. IgA = 3220 mg/dl. Fortunately I was asymptomatic. I was in the "watch and wait" mode for about 2 years watching my numbers steadily rise. Based on a lot of personal research I came up with a very benign supplement plan (mostly antioxidants) that cost about $1 per day. It took a few years but my numbers leveled off and then started to decrease. I have religiously plotted my data which shows a very definate corelation between the supplements and a reversal in the direction of my lab results. I continue to be asymptomatic and have experienced absolutely zero side effects of the supplement regeme. Will this supplement routine work for everyone? Probably not. But for $1 a day while in the watch and wait mode, it may be worth a try. IMHO there is very little downside to giving it a try. If you would like to look at my graphs and see what supplements I am taking, I will be glad to share them with you.
TAB - Thanks for your comment and for offering to share information about your regimen and how your myeloma has evolved over the past 15 years. Please feel free to post details of your situation, including your regimen and any graphs you'd like to make available to the Beacon's readers, in the forum. The forum is open access, meaning anyone can post there -- registration isn't necessary.
If you'd prefer for us to post the material there for you, just to simplify things, we can also do that.
Steve,
I read your article and it struck me that I used to know a Steve Mohr that I played football with and was fraternity brother with at Denison. It has been so many years ago that I could not tell from the photo. The Steve I knew was a big guy 6'4 and went well over 250. You might be the same person but cannot be sure. That would be ironic that we both have MM.
Ron
Steve, didn't you want to go back and throw the orthopedic cancer specialist underneath a bus? I find it very surprising and curious that he found a lesion through an MRI and diagnosed you with MGUS, but that he didn't link the two together and instead wrote your pain off as some other musculoskeletal issue.
BTW, I'm delighted that TAB weighed in here. I was thinking exactly the same thing regarding "wait and see". One can be very proactive with this disease and take measures through supplementation. One can also complement this kind of effort by getting very serious about exercise and diet. I am fighting my smoldering condition disease every day through these measures and I find it quite empowering and a source of great hope. If I weren't doing this, I think I would go absolutely crazy counting the days until my next lab test while in a purely "wait and see" mode.
I agree with TAB and Multibilly's approach to the disease.
I was diagnosed with full blown myeloma in 2005 and immediately treated with cyclophosphamide (CVAD) followed by thalidomide. For me, the "watch and wait” period started when these treatments ended in June 2006, leaving me in v.g. partial remission with an M spike of 0.2 g/dl. At that point I began to take a serious look at my diet. Towards the end of that year I started taking supplements and in Feb 2007 my M spike dropped to non detectable levels, where it has remained to this day.
I have no way of knowing if my long remission is in any way related to my dietary regime but I know that it has helped me psychologically. Looking back, I remember being absolutely devastated when, during my initial treatment stage, plans for a stem cell transplant had to be abandoned due to various medical complications. I had been hoping that an SCT might lead to a long remission and it felt like my feet had been pulled from under me. Taking control of my diet helped to restore my confidence and I like to think that it continues to offer some degree of protection against the disease returning.
I certainly appreciate everyone's comments and kind words. A common thought seems to be a relief of taking the disease on, whether it be by supplements, diet or traditional medical procedures. I guess each of us needs to decide which avenue to pursue and it is not surprising to me that there are successes in each area with this disease, as its effects on individuals seem to vary so greatly.
Ron - I am not that Steve Mohr. I played at Heidelberg in the mid seventies and then was 5''9", 150 pounds. We might have played against each other.
Multibilly - I am thankful that he referred me on to an oncologist, who was quickly able to make a diagnosis upon seeing me. I am sure that the fact that the lesion was small, barely a centimeter, and been identified 3 years earlier in an unrelated issue, had not grown, and that the pain in my lower body was not localized there, might have influenced his analysis. I have nothing but high praise for the care I have received at The James.
Excellent piece Steve! Also great to hear from another James patient. I had my SCT there in June of 2012. They have a great team up there. I wish you the best with your treatment! Maybe I'll run into you there one of these days.
Steve, thanks for the follow up clarification on the circumstances around your diagnosis with your original oncologist and those folks at The James.
Thanks Steve for this article it truly touches home for me. I watched and waited for three years having anxiety every three months when it was time for a check on my m- spike which like you progressed rapidly from one stage to the other. I took another approach because waiting and watching just did not make much sense so I said if I am going to be watching and waiting it may as well be for a purpose. I enrolled early on in a study at NIH, which ultimately led to a study to treat people with high risk smoldering multiple myeloma. The treatment was successful for me and I pray this protocol is approved so that people can be given an alternative to watching and waiting.
Steve, wife started on Zometa in 2000 when she was diagnosed with MGUS. Didn't get smoldering until 2006. I believe Zometa helped keep her Myeloma at bay as whenever they cut back on her Zometa her myeloma numbers shot up. My wife last year spent the year under radiation treatments in her skull, shoulders, back, secrum and themurs and her doctors are now calling her myeloma very aggressive. They also say her myeloma is very hard to follow by the numbers and can most successfully be tracked by MRI's.
Please make sure yours is not hard to track by the traditional tests and that you do not have the same aggressive myeloma. The fact you myeloma has shown up in so many places could be a concern.
Hi steve im glad for the imput. My husband is in that condition right now in L A. He's done radiation and now some more chemo. He would love to talk to other folks like you.
God Bless
Steve, I've never experienced the "watch and wait". I was diagnosed in April 2013. I went to emergency with severe spine pain. Crushed vertebrae and wacky blood levels. The emergency doctorr sensed something. A oncologist/hemotologist specialist let me know the devasting news. Stage 3 myeloma.
I was 43, strong and healthy. I asked "why me?". I was told just plain bad luck. Continued with the news having T4:14. Treatment began immediately. CyBorD regime. If I could be on that regimen to live on to what are called the Golden Years, I would.
September, I had my ASCT. Released after 9 days. Minor side effects but feeling good. Not only was I getting stronger physically but mentally too.
Just this past Saturday, I was released from the hospital after my 2nd ASCT. Record days in 8. Feel stronger than ever. I've yet to experience any side effects. Hopefully to go into complete remission. If not, I will with open arms accept anything that will get me there.
So be strong, smile, and live everyday like its your last. I also found if I wake up and read an inspirational quote it starts my day in the right direction.
Smiling always
Steve, what a great article and great approach to dealing with what you are faced with. I was just diagnosed in November after a orthopedic MD ordered an MRI for a shoulder bursitis. Wow. That became a gee-whiz, look what we found moment. No one even suspected anything like that. I wasn't sick, tired, short of breath, no bone pain or back pain. No nothing. Being a pharmacist, I too wanted to be very aggressive at treatment even if I caught this disease very early. I'm probably late stage 1 or very early 2. My attitude is I want it killed any way I can.
So here we go. I am half way thru a CyBorD regimen of 16 weeks induction, and this Thursday I am scheduled to have my first full check to see how I am responding. An ASCT is in my future because my oncologist suggests that currently that is my best chance for long-term survival and longer remission. I've done a lot of research since diagnosed and I also know how unpredictable this disease can be. I am not under any false illusions on what to expect or what could be. Just being an ex-athelete myself, I want to give myself the best odds I can to fight this. I too was ready to get treatment started and am glad I have engaged the battle on my terms.
Fight it the whole way!!!
Welcome to the Myeloma Beacon! And if you were (are) being treated at the James, I'm guessing you are either a fellow Ohioan or somewhere darn close to this state.
It looks like most of you folks have had better luck than I have had. The family doctor wanted to give me vitamin D nose spray because my D level was low. Boy, did I get a surprise three doctors later, after i had two vertebrae fracture, and they did kyphoplasty to repair. A biopsy confirmed stage two myeloma.
Bill, I had a foot stress facture 3 years ago & it took 3 1/2 months to heal. Then a year after that I had a vertebrae slip & that was so painful. Had MRI & doctor wanted to do surgery & put in a steel bar but I rejected that. This year I was diagnosed with MM (my kidney doctor suspected it & sent me to an oncologist). I start treatment in February. Several different doctors saw me but it went unnoticed for about 3 years. I guess we were both lucky it was found when it was. Best of luck to you.
I am glad I found this website and I am learning more about this disease, which I have. MM was discovered by my hematologist after my blood levels, i.e., hemoglobin and white blood cells were low. I had no other symptoms that I realized. I began Velcade and stayed with it for four months, then preceded to a stem cell transplant. I was 70 when diagnosed. I am now on Revlimid 5mg and have been for nearly 2 years. It is w/o the dex. I have good doctors (James and locally), but I have failed to ask questions. Maybe not wanting to know. But now I want to know more. I am getting along well and wonder how long I will stay on Relivmid and if I have other options. Every time I get a pain I worry.
Steve I was diagnosed in Dececember and am still watching & waiting. I seem to be more scared of the drugs than of the disease. I have no symptoms yet, but my doctor seems to want to start treatment before my m protein gets any higher than 2.49. I do have 20 per cent plasma cells also. I am still mulling over the wait & see question. Best of luck to you. I enjoy your columns so much.
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