Myeloma Rocket Scientist: Diagnosis Memories
Two subjects that I seem to spend a lot of time thinking about these days are multiple myeloma and rocket science. This is not all that surprising really, as I was a university professor of aerospace engineering, teaching subjects that could loosely be termed “rocket science,” when I was diagnosed with myeloma in 2006.
It was in the late spring of 2005 that I experienced what was probably, in retrospect, the first sign that something was wrong with my health: an annoying dry cough that was not a big deal, but just would not go away. At first, I thought it might be an allergy, and so would disappear when we went to England for a family visit. It didn’t. (A cough isn’t really a classic sign of multiple myeloma, but I have seen it mentioned in one or two patients’ accounts of their diagnosis. It also seems suggestive that the cough disappeared as soon as my treatment started working.)
During that autumn, I realized that I was losing a bit of weight. It was only about five pounds when I first noticed it. However, my weight is usually very stable, just creeping up gradually over the years, so this was unusual enough to concern me.
Then, from Christmas onwards, I started sweating so much at night that I kept having to get up to at some point to change. I was becoming more and more run-down (partly due to anemia), continuing to lose weight (eventually about 20 pounds), and running a low-grade fever most of the time.
At the university, I would teach a class, go back to my office and sleep, and then go teach the next class. I remember that a student in one class had a laptop that he sometimes had plugged in at the wall. After a while, stepping over the power cord a few inches off the floor to get to the front of the classroom began to feel like running an obstacle course.
I finally realized in late January 2006 that I really had to see a doctor. Unfortunately, I didn’t actually have one. This was partly because I had been, up until then, “healthy,” and partly because I was somewhat afraid of doctors. Since I suspected that I would never do it myself, I asked my wife to find a doctor and make me an appointment for a check-up.
This doctor sent me for a chest X-ray to check for tuberculosis. He didn’t think it was likely, but a cough accompanied by weight loss indicated it. I also had some blood taken for tests.
The doctor did a good job. When we met a week or so later to discuss the results, he said “I don’t want to freak you out, but I would like you to see an oncologist.” He then talked about my having an “M-spike” and his suspicion that I might have “multiple myeloma.” I had never heard either of these terms before.
When I met with the hematologist/oncologist, he at first seemed a bit reluctant to accept a general practitioner’s opinion that I might have myeloma. He therefore sent me off for various tests for other possible illnesses. We would meet every Friday, discuss the (negative) results of that week’s tests, then schedule different tests for the following week.
One of the tests was for lymphoma, which was something that freaked me out, as this was what my mother had died of. The test came back negative though.
Finally, after three weeks that seemed a lot longer, as I was getting significantly worse by the week, the oncologist took a bone marrow biopsy. I was at home when he phoned the following Wednesday, March 8, 2006, to give the diagnosis.
He said that the biopsy had shown 47 percent myeloma cells, and that I was “really sick” and should start treatment as soon as possible. (We met two days later to plan my induction therapy, which I will describe in the next column.) I tried to make myself some coffee after this phone call, but my hands were shaking so much that I just scattered granules all over the counter.
There was a small element of relief in finally having a diagnosis, as at least we now knew what I had, and so presumably what to do about it.
On the other hand, my memory of the first time that I read the famous myeloma phrase “incurable but treatable” online is that it was written in large, bold text that stood out from the rest of the page, a bit like in a movie. Obviously it really wasn’t, but that is how its impact made it stick in my mind.
My expectation soon after diagnosis, based on all that I read online, was that I would probably live for another three years. That was the survival number that you always saw quoted then. I also expected to feel crummy for most of those three years, as that’s how I was feeling then.
It was a really abrupt readjustment for someone just over 50 who had never really had any medical issues, and who had consequently always assumed that they had a long and healthy life ahead of them.
Trevor Williams 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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Welcome Trevor! Thanks for sharing your story with all of us. I look forward to reading more of it in the coming months.
I remember Googling "Multiple Myeloma" when I was first diagnosed and seeing 3-5 years as a likely survival time. My question to my oncologist was "what's the longest you've heard of anyone surviving this?" He said he knew a few people that lived for 20 years. So, I decided that would be me. That was 10 years ago.
Welcome Trevor! Looking forward to reading your column in the upcoming months. My husband was diagnosed this past December and is now recovering from ASCT in August. I was happy that treatment options today are more plentiful than when my Dad was diagnosed 20 years ago and survival time was not long. Myeloma changes your life and you learn very quickly to take one day at a time, whether you are the patient or the caregiver. We're in this together! and hope springs eternal!
I always like to hear a new story from a fellow myeloma sufferer. Thank you so much for taking the time and sharing yours. Can't wait to hear your second edition.
Julia Munson
Thank you for sharing your diagnosis experience Mr. Williams. True that all of us survivors, patients, care-givers and family members are in this journey together. And these relatable, so-very-well-written columns such as yours only reaffirm the fact that our experiences are so similar. Looking forward to keep hearing from you, wishing you health, happiness and well-being.
Thanks for writing a new column and sharing your experiences leading up to your diagnosis, Trevor. I look forward to hearing more about your journey too. If you started treatment back in 2006, you are a ten year survivor now, which is way more than the three years predicted at the time. I am not sure if bortezomib and lenalidomide were yet in use in the US in those days. I think that we can all be truly thankful for the improvements in treating myeloma over the last decade.
Thanks to everyone for the feedback on the column. I really appreciate it.
In answer to Gil's question, the next column goes into details about the treatment that I've had so far. Jan, I also did a lot of googling when I was first diagnosed: useful but sometimes scary! Susan, I hope your husband does well. On the subject of your father's experiences, as well as Nancy's comment, the progress in treatments really is striking. Back in around 2007, if I remember correctly, the 10th anniversary of Google was marked by allowing you to search the internet as it had been 10 years earlier. When I googled myeloma treatments, there was practically nothing in common with the then-current options!
Finally, I agree with Cheryl, Julia and Upasana about reading about the experiences of other survivors. That is one of the things that I have found really valuable about the Beacon.
Thanks for sharing Trevor, very interesting seeing how things can be so similar. I also had a cough that would not go away, and my doctor just said I must be allergic to my blood pressure medicine. My mother had passed away from non-Hodgkin's lymphoma. Looking forward to more articles!
Thank you, Trevor, for writing about your diagnosis and how you were feeling both physically and emotionally. I appreciated how scary it was to read the online information about multiple myeloma. I felt the same when I first researched the disease when I got my own diagnosis in August 2013. Thanks again for your column.
I was diagnosed back in 2012. I'm a very active 58 year old, workout everyday. I told my wife one day that my lower jaw was numb. I made an appointment with my dentist, he told me something was eating a hole in my jaw. In the mean time I had an MRI on my left shoulder; it has been hurting me for a while. When I got to the doctors office to get the report, I told him my right shoulder was really sore to. They x-rayed it and my collar bone looked like it wasn't there. The doctor left the room when he came back in he said you might want to set down, I thought wow. He told me I probably have cancer.
That was undoubtedly the worst day of my life, I was having a hard time keeping it together. The doctor contacted the local oncologist, told him we have to find out what's wrong with this guy, he is young and very good shape. He got me into see him the next day. We talked about the best hospitals to go to, I chose Roswell. It wasn't long after that the myeloma took effect. I could not walk or get out of bed. I went thru chemo and some radiation that got me mobile again. I asked my doctor what's the next step, he said stem cell transplant. At that I spent the holidays at Roswell. It was a long process but I got thru it and killed the myeloma in me.
I have been reading a lot about natural cures like turmeric and CBD hemp oil. I really don't like taking poison to kill poison, but it's the best we got as of yet. My last doctor appointment he told me the myeloma's back now. It's on to round two. I feel like a fighter and I'm going to win. To be continued.
Sherry, thank you for discussing your mother’s non-Hodgkin’s lymphoma and the cough that you had when you were diagnosed. I might be wrong, but it really seemed that my cough was somehow related to the myeloma, even though my oncologist said that it wasn’t. I certainly don’t know what the precise mechanism might be though. It will be interesting to see if any other survivors had a cough too. Sylvia, thanks very much for your encouragement. Diagnosis is definitely a difficult time for each of us. I hope that you are doing well. Tony, your jaw and collarbone problems sound really difficult to deal with. Myeloma certainly is a disease that takes many forms. Good luck with your future treatment, and keep fighting!
Hi Trevor and welcome to the Beacon as a columnist.
I think many of us can read your column and see our loved ones through your eyes. It never ceases to amaze me how a diagnosis takes so much time. I understand why that is but once you are in the myeloma community and are so aware of the possible symptoms you want diagnosis and treatment to come sooner rather than later. I applaud your primary doctor for being as proactive as he was. We were not so fortunate and I suspect many multiple myeloma patients go through several doctors and months of tests before they actually see an oncologist.
We look forward to hearing from you again and hearing about your treatments. Since you were first diagnosed in 2006, I can only imagine what you have been through. Again, thanks for sharing.
Thank you, William, and everyone else.
At the moment my multiple myeloma has decided to rear it's head again after a 6 year remission. I was diagnosed in December 1997 (Christmas was very strange that year), at 38 years old, thinking I had the flu (but no cough).
After 3 rounds of VAD chemo and an autologous stem cell transplant, and neither of those being effective, I chose clinical trials. With no other options, I made the best choices I could.
Interferon A didn't work and while high dose (1200 mg/day) thalidomide with dex (40 mg / 4 days / 28 day cycle) worked for about 3 years, it destroyed my body. The dose had to be lowered consistently since the peripheral neuropathy was up to my waist and elbows. When the Revlimid-dex trials came out, I was there. Another three years and I was stable, even though the M-spike consistently stayed at 0.8. My doctor and I were pretty happy to use "remission" versus "stable". 18 months ago we noticed that the IgG's were climbing and the kappa/lambda numbers were fluctuating. So here we are again. I will be starting Revlimid in about 3 weeks, but no dex.
The point of this long drawn out explanation is this: Due to the dex, I now have a vascular necrosis in most of my long bones. I've had one hip replacement and will be having another; one knee will be replaced due to AVN in the tibia and femur; one humerus (and possibly the other, if pain is the indicator) is also showing AVN. (I don't think they do elbow replacements ... lol)
For anyone who is on high dose dexamethasone, please have your bones checked. Don't let anyone talk you out of it. I know the MRIs are expensive, but without them, I wouldn't have known about the knee and elbow. The damage to my hips was caught by xray only because the damage was readily apparent.
May God bless us all in this seemingly never ending battle.
Peggy, thanks for the welcome to the ranks of Beacon columnists. I agree that it is hard to be patient when waiting to get a diagnosis, especially when you feel yourself getting sicker as the testing goes on. I also share your high opinion of my general practitioner: everything you read is that they may only see one myeloma patient in their entire career, so it is very impressive to me that he was so quick to raise it as a possibility.
Becky, I tend to think that my age at diagnosis of 51 was “young” for myeloma, but 38 really is young. Like you, I have had some experience with dex and neuropathy, although nowhere near as bad as yours in either case. Your advice about getting your bones checked is very good. I hope you do well on the Revlimid. Keep us posted – we are all pulling for you.
Wow, we just found out that my 58 year old husband has MM and my head is swimming looking for good stories so that I can inspire him to fight this. I will continue to check in. FYI, my husband had no symptom other then anemia. I hope this is a good sign. Biopsy it tomorrow.
Judy, your husband’s diagnosis must have been quite a shock to both of you. It really is a difficult time, suddenly finding yourself dealing with a disease that, if you’re like most people, you have never even heard of before! To make things more stressful, you will also have major decisions to make quite quickly about treatment options. My only piece of advice would be that, if you haven’t already, you should see a myeloma specialist for their recommendation. Treatments are advancing so rapidly that only specialists are fully up-to-date on the best options. As for what the future holds, nobody really knows with a disease as multi-faceted as myeloma, but there is certainly life after diagnosis.
Hi, everyone. Checking in (I got lost ... smh). My first 3 weeks of Revlimid are done and so far, only a little irregularity and I'm counting my blessings.
I was thrilled to see the FDA approved the new drugs!
Judy, Trevor is so right! A specialist is the way to go. When I was diagnosed, there were only 2 options, SCT (either way) or multiple chemo rounds. My chosen doctor is wonderful and sent me to those he knew could do what he couldn't. As stated in a post above, things are much different nowadays. Lots more hope and miracles happen every day, and I firmly believe I'm one of those miracles.
I'm also praying that the rumor that MM will be treated as a chronic condition, not an automatic death sentence, comes true, quickly.
I'm wishing all of you a wonderfully Blessed Thanksgiving!
Becky
Becky, I’m glad that your experiences on Revlimid are good so far. That’s encouraging. So too was the news about the new drug approvals. Two in one week is really something! I think you’re right, myeloma is close to becoming a treatable chronic condition, at least in certain cases. Finally, Judy, I hope things are going well with your husband.
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