Arnie’s Rebounding World: My New Occupation As Multiple Myeloma Patient
From time to time, I will run into an acquaintance who is vaguely familiar with my situation but not really aware of all the details. They will often ask, “Are you back to work these days?”
I usually will respond with something like. “I’m busy enough just taking care of my health.” This is true, but an oversimplification.
The unfortunate reality is that I have become a full-time multiple myeloma patient.
It wasn’t supposed to be this way. I never felt like that was part of the original plan.
When I was first diagnosed with multiple myeloma, I was willing to endure whatever was needed to be done so that I could put this disease behind me.
As an Ear, Nose, and Throat doctor, my frame of reference for cancer was treating tumors of the head and neck. The treatment intent was almost always for cure. With most cancers of the head and neck, the treatments can be brutal, but once it is over, it is over. The longer the patient stays in remission after treatment, the better the chance of a cure. After five years, the patient is officially considered cured.
This is not the case with multiple myeloma.
Even though myeloma treatments have improved greatly, very few patients are actually cured, and even long periods of remission provide no comfort against relapse.
Multiple myeloma is officially considered treatable but not curable.
Across the spectrum of multiple myeloma, “treatable” can mean many different things. For some people, this can mean years of minimal or no treatment. Others have more aggressive disease requiring more aggressive, almost continuous treatment.
In my own case, I continued to work for three years after induction treatment and autologous stem cell transplantation (a transplant using my own stem cells) until side effects made this no longer possible.
Since then, it has been a roller coaster ride of almost nonstop treatment. In the last three years or so, I have had a second autologous stem cell transplant, multiple rounds of novel myeloma therapies, traditional chemotherapy, a donor (allogeneic) stem cell transplant in August, and radiation therapy last month.
I had hoped all of that would give me some period of relief and somewhat of a break from nonstop treatment. This has not turned out to be the case. I have relapsed again with several areas of activity showing up on a recent PET scan.
So, the plan is two to three cycles of systemic treatment. We are going to try Kyprolis (carfilzomib), cyclophosphamide (Cytoxan), thalidomide (Thalomid), and dexamethasone (Decadron). Essentially, it is the “CYCLONE” regimen described by the Mayo Clinic and well reported on by The Myeloma Beacon. These are all drugs I have been on before but never in this combination.
Systemic treatment will hopefully be followed by a donor lymphocyte infusion (an infusion of white blood cells from my stem cell donor).
I am fortunate to have Moffitt Cancer Center here in town, so travel is not a big issue. But this still means trips at least twice a week to the hospital for infusions, more side effects, and more tests.
My occupation has become multiple myeloma patient. When I am not being treated, I am thinking and worrying about the disease. I am researching anything I can find about it. I am talking to experts about it whenever possible.
Don’t get me wrong, I live my life as much as possible. I try not to make multiple myeloma all consuming, but it is not always easy.
I am able to exercise some, spend time with my family, and go out with friends.
But as my wife has noted, it seems that whenever we try to make plans they get sided lined by some new unexpected twist on the myeloma road. Treatment and concerns about infection have made travel very difficult. On several occasions, I have sat down to plot my next career move only to be derailed by the next myeloma treatment.
So for now, I just have to wrap my mind around this next round of treatment, try to make the best of it, and not let it get the better of me.
As with any occupation, I try to bring all my energy, thoughts, and resources to bear. I like to think I remain clear eyed and realistic knowing that at this point the trajectory of my disease is not good. But at least for the time being, I feel that I still have a few options left in front of me.
Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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Thanks so much for your columns. Your narrative and insights helps many of us plot our own strategies in this confusing MM world.
Dr. G.,
Not the least of the impressions one receives from your writing is the tremendous courage and endurance you have shown as you move through your various challenges of relapse and remission, relapse and remission.
I guess what I'm saying is that all of us here want to reassure you that we do understand, you aren't alone in your valiant struggle to survive the many shots that MM has thrown at you! I know you've heard all of this before, but from where I stand, one can never hear it enough!
Thank you SO MUCH for sharing your journey with us!
All the best,
Steve
Arnie- as usual, excellent topic and thoughts-thanks-
You mentioned second opinions from different centers over the course of your treatments and I have often wondered how you get them; do you have to physically go to each different doctor/clinic? What info do you need to provide? How did you decide where to go for a second look?
It may be that you and I share a similar path, since my M-spike refuses to drop below 1.2, even after the auto stem cell transplant 3 months ago.
My doc is very good at the Seattle Cancer Care Alliance, but there is so much info and so many trials out there, the more doctors who look at us the better it would seem.
All the best to you and yours,
Eric Hansen
Reading posts like yours brings me back to reality. I am in a complete remission post SCT transplant period where things are pretty good and nearly back to normal. I am back to swimming, I have done 100 mile bicycle rides, been skiing several times this year. The only realy issues have been getting sick fairly easily because of low WBC from Revlimid. Many of the people I know and work with believe I am "cured" because of how what and how well I have been doing, despite what I tell them about myeloma. I can go days at a time now forgetting or not thinking much at all about myeloma.
I know this golden period I am in will not last forever and I dread the day I enter the period where I relapse and start the ever increasing cycle of treatments as my myeloma becomes more refractory and drug resistant, ending in what Pat described as the elephant in the room in his last blog. Some day this diease will consume my life again like it did during my induction thearpy. That seems to be where you are now. I hope long term effective treatments or a cure is developed before I get to that place. Hang in there and hopefully these new treatment regimes you are trying will be able to maintain the diease in stable manner that allows you to get back to enjoying life more.
Arnie,
Your story is inspirational. You are the definition of true grit. I count myself as lucky to have been in remission but continual treatment for 4 years. Continual treatment is seemingly the majority's definition of what having multiple myeloma means. There are some that have had long remissions and are not in treatment but that is the exception. Most are in some form of treatment, be it maintenance like me, or something much more invasive such as you and Pat and a host of others.
Being a doctor you must have wondered, maybe even tried to analyze, how you came down with MM at a relatively young age. I have often thought of that as no one in my family has had it nor anyone in my family's past that anyone can recall. So it has to be triggered by something either in the environment or something we came in contact with in the past that manifested itself years later. What that is or was remains a mystery. There are so many different people from a wide diversity of backgrounds that have this disease that I find it almost impossible to see a common denominator. If we could find something in common, maybe that would be a big step in finding a cure.
I hope this new cocktail approach works for you. I am sorry that the allo transplant did not hold up. I am sure you were very disappointed with yet another setback. That is why you inspire me. You get back up and seem to keep a positive outlook despite the setbacks.
Ron
Hi Arnie,
Thank you so much for sharing your journey. I look forward to reading your articles.
Would it be ok to contact you via private email?
Take care, Stan
Hi Arnie,
Thank you for sharing your story. I have also viewed my current occupation as a manager of myeloma. With regards to my allo it was the DLI that finally hit the myeloma on the head, hopefully it will be for you as well. I am not sure whether catching an adenovirus at that time hindered or helped the process (I wouldn't suggest you do that). All the best for the next treatment and stay as well as you can.
Libby
Ron, I have always wondered if the damage to my genes was a single event or was it an accumulation of events. For my treatment it doesn't really matter the damage is done I dont even know what damage was done ie)what specific mutations do/did I have. BUT I do have a fair idea of a number of possible events during my life that may have impacted on me developing MM. Firstly I was born and grew up in a coastal town where aerial spraying of the local banana crops was the norm (I cant remember when they stopped spraying - there had been higher incidences of birth defects, was there a correlation - who knows). Secondly, my grandmother (a keen gardener) used to store her organophosphates under our house - we had been told not to play in there but it made such a great hiding place. I know some agricultural chemicals have been implicated in MM. Thirdly, my fathers dental practice was in the back rooms of our house. I can remember playing with mercury when I was younger. I loved the way the heavy silver stuff would roll around on my hand (I know I wasn't supposed to play with it) - I dont know whether mercury has been implicated in MM. Those were my growing years then came my working years. Prior to having children I was a post doctoral research fellow working with DNA. So I used mutagens, carcinogens and radiation all things that can change DNA. For one of the organisations I was the radiation safety monitor and would be the one to find the radiation that had been disposed of incorrectly - there wasn't a lot but still. Finally after leaving science I started a company manufacturing hand made baked goods. Apparently there is a correlation between bakers and MM. I look at my history and I dont find it surprising that I developed MM. Although I cant be certain I think I probably have more than one mutation which would have impacted on my treatment and maybe the reason my myeloma is/was chemorefractory.
Thanks everyone for your comments. As always I am touched. Eric, your question about second opinions is a good one. You are at one of the best centers in the country in Seattle so you are in great hands but it is always good to have other experts to bounce ideas off of. Although at times this too can be a double edged sword, raising more questions and confusing an already confusing situation. i would say there are about 20-25 or so what I would call "myeloma thought leaders" through out the country who I would seek out for second opinions. It is not hard to figure out who these people are. They are on most of the studies and talks and are often quoted in the myeloma beacon. For myself I chose to reach out to Dr Ken Anderson in Boston when I was first diagnosed, knowing that even If I didn't need him at that moment I would at some point and wanted to establish a relationship. Since that time I usually fly up to see him 2-3 times/year or when I am at major decision points in my treatment. At this point he is also familiar enough with my case that we can email or talk on the phone when I have critical questions and cannot travel. The relationship has been invaluable to me. I have also found that most of the myeloma experts are willing to talk on the phone although sometimes it requires some persistance to reach them. Often the more important they are the more willing they are to talk.
I have chosen not to dwell too much on why I got multiple myeloma however I an certain that there are environmental factors. I have no other risk factors
Stann I would be happy to email, the Myeloma Beacon can provide you with my private email if you need it
Arnie, I read all your columns and I should say I was very impressed by your last one. As a physician you have a very clear view of what could be expected by a MM patient in term of treatment efficiency. Your struggle is impressive and show us how courageous you are after several tratments bringing hopes but also pain and distress when it does not work. I share with you and with other patients the fact that environment is likely one of the sources of this disease. Although our specific genotype could explain a kind of pre-determination for this disease, chemicals and pollutants in the air, but also waves (radars, GSM, wifi, phones inside houses, radiations,...) are to be investigated closely.
Hi Arnie Than you for your post and I'm sorry you have replaced your work with MM FULL-TIME.
I retired in 2004 after 29 years at the same job. I loved my job, and retirement is NOT overrated!
Then, on 24 May 2011, at the age of 60, I was diagnosed with high risk (4:14, 1q21, deletion 13 and many others) non-secretory multiple myeloma with 80 percent plasma cells, which has turned in to a full-time job! I don't think a single week has gone by in the last 22 months that I haven't had a autologous stem cell transplant and recovery, variety of tests, blood draw, bone marrow biopsy (have had 10), Aredia, or chemo. I'm lucky that I have my retirement income, EXCELLENT medical insurance, and no dependents. However, I watch over my 92 year old father who lives independently in the same town I do.
I'm always jealous of other multiple myeloma patients who say in their blogs, "don't have to get another check for 3 months!" And on the other hand, many are probably jealous that I'm retired!
So far, I've survived two failed autologous stem cell transplants, tons of chemo, and driven a gazillion miles since I live in very rural Mackay, Idaho (100 miles from the nearest stoplight and the best place in the world to live UNTIL you need SPECIALTY MEDICAL CARE). Right now, in relapse with 60 % plasma cells back in my bone marrow (I've been in relapse for a full year now previously failing on Velcade/Revlimid; Zolinza) and I just started on Pomalyst after failed 4 Cycles of carfilxomibf)/Revlimid 10mg 21/28; and Dex 24 mg, driving 230 miles weekly for blood draws, in 2012 I drove 18,300 miles for medical care...which makes me just plain TIRED!
I may be 62 years old now, but I feel much younger and want to be more active than my low hemoglobin allows right now.
Hi Arnie, Every month you generously share your journey with us readers, and I hope that as this year goes on and you try new drugs, your myeloma will go back into remission. as well as looking after your own health, you are now an educator for many of us. you provide a bridge between being a doctor, and your experiences as a patient. Thanks so much for that, and hope that in your 'spare time' you can also get out and do some other activities that interest you and your family. Best wishes to you!
Thanks for this, Arnie. The thing I appreciate most about your writing is that you are a realist... the facts are in front of you and you deal with them honestly.
Strength, patience, and stay positive.
Arnie-
Thanks for your post and I wish you the best! This is my first post, but I felt compelled to do so.
Interestingly enough, your myeloma journey is very similar to mine, as I have travelled the same road. Many failed treatments (most recently DCEP).
They are prepping me hopefully for a donor transplant but they have to get the freelite numbers and the percent of plasma cells in my bone marrow down. I am now on Velcade (again) in combo with Doxil (never used it) and Dex (the staple). They are hopeful that this can bring my numbers down to the point where they can do the transplant. But I am wondering if that even makes sense.
It seems that folks like us, who are refractory to many treatments and have used various agents do not respond well to these allo transplants. Does anybody here feel differently? I remember all of the issues that I faced physically after two auto transplants. I have read that the side effects from the allo transplant are substantially worse and I am beginning to think if I should go through it if it has a low probability of working. I will probably go through it if my numbers come down because we are all fighters. But I still wonder...
If I was an accountant, I would have MM. And I would probably blame all of the exposures in my life. If I were a baseball player, the same.
I'm a farmer, so many people think "oh..that's why you have it".
I started farming in my mid 20's. The group of farmers I know number at least 150. I started farming the latest of the group, so I have the least exposure to farm chemicals. However I'm the only one with MM (or any other blood cancer). Some of the older guys I know used to spend 1000's of hours IN the spray materials, and they are fine. They grew up with the farm chemicals, I didn't.
Obviously not a real study, but it seems to me that unlucky genetics has to be the overwhelming factor in contracting this disease.
I hear you, Arnie! That's why I gave in early and decided to work (although I rarely get paid!) learning as much as I can about our cancer and helping other patients and caregivers. Never dreamed it would become a 24/7 proposition! I have had more than one reader tell me that I inspire them. Well you inspire me! I can only imagine how difficult this has all been for you, your wife and family. You're a lucky guy she puts up with you! HA! Keep smiling good friend!
Will,
I dont know how to contact you personally so I will reply to your query here.
My myeloma was chemorefractory and I have been in remission for a year now after my allo in April 2011. I found the whole mini allo procedure much easier on my body than the auto. I do have chronic GVHD but I am LIVING with it.
High dose melphalan for my auto only wiped out 16% (based on paraprotein/M-spike level)of the activity and nearly killed me. There was no remission and my paraprotein level was back to where it had been in 3 months. It took me approx. 8 months to recover from the auto. There was no point in doing a second auto.
Prior to my allo my paraprotein never went below 16 (I think that is equivalent to an M-spike of 1.6) and during the allo it went up to 20. Are your levels much higher than this? At what level will the doctors do a transplant? I would want to know why they have chosen that particular number and what their reasoning is for not doing an allo with a higher cancer load. It may have something to do with trying to minimise GVHD.
Dear Arnie, I have been following your journey with interest and prayer and am so sorry that you are having such issues. I applaud you for your courage in having undergone the allo transplant and wish you the very best in your upcoming treatment. I am actually electing to have a second allo transplant nearly two years after the first to "consolidate" that first one (it is amazing that it takes two different donors to "consolidate"; just when I think I understand this disease, I realize that I know nothing!). But like Libby above, I have found the allo transplant much easier to withstand physically than the auto, although the auto wasn't so terrible for me either. Perhaps it is the 40-something age that makes these treatments more tolerable, or my attitude of denial (don't let Pat hear about that after his beautiful post on accepting death!). We are all at different stages, not only of cancer, but of life, and that will greatly affect our treatment and our decisions. But you are an inspiration, and I pray fervently that you will overcome this trial. Bless you for your transparency and open heart!
Hi Arnie,
Sorry to hear that the MM road is now getting more difficult for you. After my diagnosis in 2007, I underwent two auto stem cell transplants in 2008 and have been on Velcade therapy (currently Velcade and Dex). I worked at a demanding job requiring frequent travel to the Far East until Oct. 2009 when I retired at age 65. During the years I was working, I had my treatments scheduled for 7:30am and went to work following treatment. I scheduled my travel itineraries around my treatment schedules. I didn't tell anyone except my closest work colleagues that I even had MM.
When I retired in 2009, I started to worry about my MM and spent too much time thinking about it. I had to find something else to preoccupy my thoughts. I had been a golfer since my early 40s, but now took up the game with a seriousness that I didn't have before. I scheduled my treatments around my golf games, not the other way. If I was getting a bone marrow biopsy in the afternoon, I would play 18 holes in the morning. When I golf, I thing only about golf and block the MM story out of my brain. I noticed if I spend too much time indoors with little to do, I begin to obsess about MM, treatment, future, etc. Negative thoughts are not very helpful when you are fighting cancer.
Anyway, my prayers are with you.
Larry Gaito
Arnie, I echo the comments above. Best wishes and thank you for sharing your rollercoaster!
I received DLI a month ago, 5 months after my allo, and the slowly steady upward trend of my serum lambda light chains has been broken and turned down from 69 to 58. I know it’s a single reading but kappa went up so most likely relevant. I will receive another dose of DLI in a few weeks since I have no GVH.
I know the feeling of cancelled trips. I and my family (6 persons) had scheduled a trip t New York and a cruise in the Caribbean for New Year. But nope! Had to cancel that. Next week we are, hopefully, going to The Canary Islands. I keep my fingers crossed. And New York has to wait until August.:)
Åsa Rydén
Arnie,
Well written. Elegant in its simplicity but powerful in the context provided for those of us who share in the struggle.
I was diagnosed in December of 2002 and have had three periods of remission. I took advantage of them taking the time to do things I'd put off as selfish before. I biked 195 miles in the Pan Mass Challenge four times, and shorter routes in two subsequent events. I vacationed in warm places, hot places really, with white beaches and water clear to the ocean's bottom, (a trip I'll take at least one more time). I tried snow boarding once and ended the day with a spectacular fall and a minor concussion. And all the while worked hard at my job until June of last year as I prepared for a September auto transplant.
I've been afraid to admit to others how serious it all is. People are busy and I felt I should be strong even when I didn't want to be. The stem cell transplant and ongoing recovery changed that some. My son and daughter cared for me during the worst of it and that I allowed them to, was as revealing to me as it was to them. The truth is I didn't want to admit to myself what was happening. I was creeped out thinking about the microscopic destructors coursing through my blood.
At 64 I wonder if I'll ever work again. Frankly, I feel guilty and stressed at the prospect of not working, though currently I'm pretty much whipped after walking a mile, three or four mornings a week. I spend my time visiting the clinic, going over medical bills, working out insurance issues, planning meals for my new vegetarian diet, and hanging with my kids whenever possible. And there is this life that rolls on, that won't wait, unhesitatingly willing to roll over those who give in.
In the meantime, it was good to find this place to think out loud, in a way, with others of shared experience. I apologize for going on, but at the same time, thanks for the space.
Blessings!
Hello, Arnie! I also would like you to know that I am following your journey with great interest, and wish you an easing of suffering, worry and fear. You are a brave man, not only because of your choices and tenacity of treatment, but by your willingness to skillfully describe your recent challenges. My best wishes and prayers are with you, Jan
Hi Libby-
Thanks for your response.
I am working with two doctors now. Dr. Koehne (the transplant specialist) at Memorial Sloan Kettering and Dr. Mazumder at NYU, who has been my myeloma Dr. for nearly 5 1/2 years.
When I did my first Auto Transplant my freelite number was 3.5 and the top of the range was 1.4. After the transplant it only went to 3.1! Dr. Mazumder felt that because of my age and relative good health, that I should do another auto. After the second transplant I was in complete remission for a year. Currently my freelite kappa number is at 13 and has been fluctuating up and down. They would like to get it to at least 3. They are saying that the transplant works better when the number is lower. it is a clinical trial where they use four different chemos and they deplete the T-Cells of the donor to reduce the GVHD.
I am glad to hear that you are in remission!! Hopefully I can get there also.
Hi Arnie,
I loved reading your story and what others have had to say. I am 22 and my mother who is 52 has only recently been diagnosed by this horrible evil disease. She has just started chemotherapy after a week of radio. She will then have a stemcell transplant later on.
Does anyone know why the doctors hardly suggest a bone marrow transplant? Is there anything of mine I can give to my mum!?
Glad I found this site - I think it's going to help us as we enter the long journey ahead.
Chloe
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