Mohr’s Myeloma Musings: What A Difference A Year Makes
I consider myself an optimist. I always see the glass half full rather than half empty. This approach has served me well since my multiple myeloma diagnosis two and a half years ago.
However, while awaiting the blood test results of my regular check-ups, I turn into a pessimist. I expect the worst, and I mentally prepare myself for the worst possible news. I have no explanation for this change in attitude that I go through every three months.
In addition, a sense of paranoia overcomes me on the days leading up to the release of the test results. Every ache or pain becomes imagined evidence of new lesions.
A delay in the release of the results conjures up a notion that my doctor is re-running the tests to verify that the bad numbers are valid before sharing them with me.
I become introspective and moody. My family can tell it is time for the three month check-up without having to check the family calendar on the refrigerator.
Such was my state of mind last week when I logged into my online account provided by my hospital to view my latest test results. These results were of special significance as they would determine whether the stem cell transplant I had undergone in June was a success.
My pessimism, paranoia, and anxiety quickly disappeared as the following came up on my screen:
SPE Interpretation: Normal serum protein electrophoresis pattern.
Monoclonal Protein, Serum: None detected.
Immunofixation, Serum: No monoclonal protein present.
I didn’t know whether to laugh or cry. I did both.
I couldn’t help but think, “What a difference a year makes!” It was almost a year ago to the day that my oncologist informed me that “watch and wait” was over and that it was necessary to begin treatment.
What have I learned in this past year? What advice can I give to others?
After all, I consider myself a multiple myeloma veteran now. I've been through the initial diagnosis, watch and wait, radiation therapy, a bone biopsy, three bone marrow biopsies, four PET scans, numerous full-body x-ray surveys, induction therapy with seven cycles of Revlimid (lenalidomide) plus dexamethasone (Decadron), and a successful stem cell transplant.
There is little else for me to experience except for maintenance therapy and the inevitable relapse.
One thing I know for certain. I have been blessed with outstanding care. This is in no small part due to the fact that I live just 50 miles from a cancer research institution that includes a group of hematologists / oncologists who specialize in the treatment and care of multiple myeloma. Being treated by a myeloma specialist is of paramount importance and something that should become the top priority for newly diagnosed patients.
Another thing that I learned over the past year is that the treatment regimens and procedures are ever changing. For example, I fully expected to be isolated and highly restricted in activities and diet upon discharge from the hospital after my stem cell transplant. Much to my surprise (and delight), five days after being discharged I was released from all physical and dietary restrictions. My oncologist said that there was no data to support strict restrictions on diet and activities post-transplant. This was at odds with the material the hospital had given me to educate me on the transplant procedure. Things change that quickly.
I am not one to demonize insurance companies, especially my insurance carrier. My policy has outstanding coverage. My claims have totaled nearly $200,000 this year, and my total out-of-pocket expenses have amounted to $2,500 – my deductible.
However, expect “insurance surprises.” My surprise came in the form of a $12,000 claim that arrived nearly two years after the service was performed and was rejected. My policy excludes genetic testing. Because the word “cytogenetic” appeared on a claim presented to the insurance company, payment of the claim was denied, citing the genetic testing exclusion. Fortunately, a young account representative at the cancer center vigorously pursued this error on my behalf and was able to get it covered by my health insurance carrier.
Taking time to learn the details of your insurance coverage is time well spent and prepares you for any battles you may have with your health insurance carrier. Enlist the help of your health care provider in resolving issues. I found that they were more than glad to do so. They have the expertise and knowledge of insurance to battle with insurance companies on equal terms. I am convinced that, had my health care provider not intervened on my behalf, my battle with the insurance company would still be ongoing.
One thing I also learned, especially during my transplant, is to take care of my caregiver. We become so caught up in our care and how we are feeling that we forget about the physical and emotional well-being of our caregivers. Judith London, a psychologist who recently wrote a book for Alzheimer’s and dementia caregivers, said "Caregivers are often the casualties, the hidden victims. No one sees the sacrifices they make."
One thing I made very clear to my wife as we were planning her caregiver role during my transplant is that she would not be at the hospital 24/7. We identified in advance three days where she would not even come to the hospital. Further, on those days she was at the hospital, she was rarely there for more than four or five hours.
Such an arrangement gave her the physical and emotional break that she deserved and needed. In our case, it also enabled her to prepare for my return home, where she would be my sole caregiver.
I would advise other patients to never forget that myeloma is a heterogeneous disease. I personally know three other individuals with this disease, and our experiences, including symptoms and responses to treatment, vary greatly.
I also suggest that patients be wary of relying on anecdotal evidence when considering treatment options and planning treatment. The few times time I have done so have led me astray and most often given me false hope and expectations. You are better served to rely on research-driven data, procedures, and protocols that often only an oncologist can provide you with.
My self-imposed status as a myeloma veteran hardly qualifies me as an expert. I still have far more questions about this disease than I have answers. Actually, I enough questions to write an entire column on those alone.
I am now classified as having a very good partial response to treatment. To determine whether I achieved a complete response (CR) or stringent complete response (sCR), I would have to undergo a bone marrow biopsy. Having less than 5 percent plasma cells in the bone marrow is one of the criteria for achieving a complete response. Part of me wants to do that bone marrow biopsy to ascertain exactly where I am at.
However, my doctor says that the result of that biopsy would in no way influence the maintenance treatment I am scheduled to start in January. Therefore, I am not going to split hairs in classifying my response to treatment. As far as I am concerned, I am in remission and I don’t need another test to confirm the fact that I am in a much better situation today than I was a year ago.
While I consider myself an optimist, I also am a realist. I know that as positive as my situation is right now, it can change quickly. That is the reality of this disease and the one fact that was driven home to me during my experiences over the last year.
Permanent neuropathy, the threat of secondary cancers, and the side effects of low-dose Revlimid maintenance therapy are short-term issues I will have to deal with next year.
Hopefully, the more serious issues of the inevitable relapse are years away. Time will tell.
Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thank you for sharing, Steve. I'm sure that most all of your readers can relate to the emotional roller coaster ride that you are on where testing is involved. You did a wonderful job of putting it into words.
Congratulations on your positive results! Enjoy this time and get on with the business of living your everyday life. Yes, things can change abruptly – life is like that! – but no matter what the future holds, this time is yours to enjoy. Enjoy!
Steve, congratulations on your latest lab test results. That's excellent news! And thanks a lot for sharing the lessons you've learned during the past year. Best wishes for the next year, and the year after that, and on and on!
(Even though I congratulated you on your lab results, I have to admit I feel a little unworthy when someone congratulates me on my current status. I feel like it is my medical team that deserves the congratulations, not me. Anyway, I'm happy for you!)
Sandra - Thank you for your kind words and word of encouragement. I am enjoying life like never before, focusing on the simple philosophy of What's Important Now.
Mike - I am of the same mindset as you when people congratulate me on positive results. My medical team deserves the entire credit, and I wish I could forward every congratulation I receive on to them.
My doctor told me the same thing after my SCT. Did I want a BMB just to say I was in CR. No thanks.
Glad your news is good, and hope your remission is long.
Steve, Great News. I am a caregiver. My wife is in the watch and wait phase for the past four years. I definitely know the anxiety of 3 month blood test results. Good looking out for your wife. You both seem like a great team and I wish you and you're whole family many great years ahead.
Great news Steve! Don't get the biopsy just to find out if you're in Complete Remission. You'll get to enjoy another one soon enough. Enjoy your health without the label.
Thanks for the excellent article.
Aloha
Tom
Steve-
Good column as usual. One of your statements about caregivers taking care of themselves is sooooo important. My sister came to stay with me during my transplant for 6 weeks. Since she flew to Philadelphia from Iowa, she didn't know about what to do and I didn't want her to feel that she had to stay at home with me all of the time. I bought theater and concert tickets for her and paid for a ticket for a friend to go with her, and arranged dinner dates with friends. By doing this, she ended up with invitations to other events around the city and at friends' houses. I also made sure that I had a stack of brochures for things that were interesting for sightseeing - various museums, historical sites, menus from fun restaurants, etc. I also included transit maps and street maps for when she took the bus, trolley or car.
My sister enjoyed her stay here while caring for me. Because I made it so that she had fun, she had no problem agreeing to come and stay with me post surgery a couple of years later. For that time, in addition to doing all of the above, I bought her a ticket for unlimited access to all of the Film Festival events that was held while she was here.
So, for out of towners, a little pre-planning makes their experience better. For those who are partners/spouses and friends, arranging for some fun time for them will go a long way in helping their mental health while you aren't feeling great. Planning a day out with friends, which includes a meal at a favorite restaurant that is paid by you for each person who is included, is a great one. Getting tickets to something that the person really wants to go to. A great massage is also good. Planning with the person's friends for dinner / lunch / invitations and other outings is also good.
Keep on doing well,
Nancy in Phila
Lots of gems in this column, Steve. Thanks, and congratulations on the response you've had to treatment so far.
Like Nancy immediately above me, I picked up on what you said about how you and your wife planned her time before your stem cell transplant. That's a great tip, and I also really like the ideas Nancy shared based on her experience with her sister. That's a high concentration of great advice!
Looking forward to your next column, and thanks for sharing your insights and experiences.
Early on a wise female friend said that we should not forget our spouses/caregivers, who without an illness themselves give up so much to take care of us. Thanks for the caregivers out there, including my wife, Sharolyn, whose birthday is Monday.
Steve, great news, I felt you would have great test results the way you bounced back. The team does deserve a lot of credit but, remember, so do you and others that have gone through this with the same results. Our bodies have had to go though a lot and to respond in a positive way says a lot about ourselves too.
I hope everything stay positive for a long time for you!
Joe - I was happy to have 18 months of watch and wait and, after going through 7 cycles of Revlimid and dex, wish it would have been four years. You are correct, my team is outstanding. I hope your wife's watch and wait goes on for many more years.
Tom - I've enjoyed your articles. Great insights.
Nancy - Your thoughtfulness for your caregiver is at another level than what I've done and you have some great ideas for making their difficult situations tolerable. Thanks for the advice!
Cheryl - Thanks for the compliments. Nancy has some great ideas and what makes The Beacon great is the contributions and comments from all who participate.
Thank you so much Steve,
I sit here today as a caregiver of a 52 year old husband who simply went to bed on April 24 and woke at 1 am on April 25 to go to the bathroom. When he rolled over in bed, his humerus broke in half and everything started. That night will replay over and over again for both of us as I was out of town and he had to be taken by ambulance to the hospital.
We live in a small town and no one here is able to care for his injuries or what we where about to be faced with. As a Nurse Practitioner, everyone says at least you have the benefit of understanding what is happening. In fact, sometimes it is so overwhelming, because I know too much, and sometimes it is frustrating because I want to know more.
I am a natural caregiver and I am heartbroken to see what has happened to my husband the stubborn, independent, hardworking bull of a construction worker / truck driver. He has been unable to work since April because of his injuries and surgery on his arm. He is amazing, he is gaining strength every day. This past week was the middle of his 3rd cycle of treatment and the end from what they said. Just to overwhelm us more, we met with the transplant team on Thursday. They want to start the stem cell harvest in the next two weeks as we expected. what we did not expect is the following week they want to do the transplant. We have so many questions, as we where told prior that this would not be til after the 8 cycles. Is this a good thing, or as you say it is hard not to be a critic and say "does it mean something more". Our oncology team is excellent and we have to trust in them and know they are doing what is the best.
As a caregiver and a health care professional I can vouch for the overwhelming responsibilities and emotions this takes on us. I feel guilty most of the time for that because it is my husband going through all the pain. But some days I want to shout "I am 43 years old, why is this happening at this time in my life, and to our children?". Then I feel selfish. The stress of being the sole worker, the transporter, the medical record keeper, the corresponder and the interpreter is incredible. It is hard to remember that I need to keep healthy as well. I am nervous about the transplant and the fact it is very sick season in my office, how will I keep my husband healthy when I have so much exposure.
It will all work out. We are strong, He is the strongest. We have to trust in the path that God has given us, for some unknown reason. We will prevail and he will be where you are very shortly. Thank you for your positivity (even when it is so easy to look the other way). It truly helps to hear the flip side sometimes.
Thank you for listening.
I hear what you are saying about caregivers, but I have to say I think women are more natural caregivers. Especially in our case, where my husband goes to work and travels most weeks from Monday to Thursday. I am the one who gets up early and gets the kids to school everyday. I'm the one who does ALL the supermarket shopping, cleaning, laundry, cooking and I drive myself to all my treatments. Even on the days I don't feel like eating, I still make a meal for the family. My husband is great and takes care of the garden, but really has no idea what his role of a caregiver is.
I have no family in this country (luckily I have a great group of girlfriends). I suppose I am fortunate that I still can manage most of the activities, but sometimes its hard. I've had to realise that if I don't get to clean the house this week, it really doesn't matter, or if I don't serve vegetables for a meal, it really doesn't matter. People have said pay someone to come in to clean, but that is not always possible.
Christa - Like your situation, they moved my transplant up from the original date. I think that often happens due to the availability of beds in the transplant wing, which I understand is hard to predict due to the difference in how individuals respond to the process.
Having said that, mine was only moved up two weeks. Originally, my doctor wanted to do my transplant in December after starting treatment in October, but be allowed me to put it off until June due to work and family situations. Everything has worked out fine for me so I wouldn't put too much into the change in schedule. But, as I said in my column, don't rely on my anecdotal evidence. Far be it for me to give advice to a nurse practitioner but you are fortunate to have an oncology team that you trust. I am at peace with everything that has happened, and will happen to me, because I have a similar trust in my team.
Your husband is very fortunate as he has a medical professional as a caregiver, a trusted oncology team, and a shared,strong faith life. Best of luck to you and your husband as you move into this new phase of treatment!
Aussiegirl - I won't argue with your premise about women being better caregivers than men. All I know is that I would be hard pressed to come close to match the care that my wife has provided me if the role was reversed. What touches me more than anything is her selfless attitude - not one complaint during this entire ordeal. You are a special person to do all that you do while fighting this disease!
Are you an Australian living in the U.S. or an American living in Australia? I lived in Australia for 5 years from 1969-1973.
Steve I am an Australian living in the U.S.
Hi Steve,
Great that you are feeling well. My husband had his SCT for osteoclerotic myeloma, we are day 33! He is feeling great & I just wondered if you knew the release factors from the diet! His WBC and platelets are all normal and his RBC is only slightly low, so it is tempting to be a little less strict on turning the steak to leather. I have been trying to research what factors determine how your immune system is recovering but it is proving tricky to find!
Do you have any idea what your oncologist was referring to?
Karin
Aussiegirl - Unfortunatley the closest I have come to going back to Australia is by visiting the Myeloma Foundation of Australia website. It has some excellent educational videos that I found helpful when first diagnosed.
Karin - I am glad your husband is doing well. I really don't know what my oncologist was referring to except that he said that they were of the opinion that there was no data to suggest that strict dietary and physical restrictions were necessary post transplant. I am certain that each case is treated individually. I don't know if this helps, but a week after discharge my platelet count and RBC were just below normal, mean platelet volume, RBC distribution, WBC and RBC were all normal.
Congrats Steve,
When you went through the SCT, there was a period of silence in which you did not communicate and I thought that things were not going well. I am sure the SCT experience was not all that pleasant, but things did go well, as the results appear to be very good. I hope that you can stay in a remissive state for a long time to come!
We all need to be reminded that our caregivers are going through the ringer with us and suffer as well. Thanks for that reminder!
Ron - You are right in regards to the period of silence during the transplant. I feel bad that I was unable to report on the transplant as The Beacon and I had arranged to do. Fortunately, others have been able to do that since then. The first 9 days were really tough and I was incapable of doing much of anything. On about Day 10, things changed suddenly and drastically for the better, and since then everything has gone very well. Thanks for your words of support!
What a difference a year makes; I feel the same way. Having undergone my transplant at the end of January, this past summer was so much better than the last one. Hoping the good feelings and better health continue for us both.
Congrats Steve. Well said. I know I feel like that a lot. I just saw the doctor last week for my 6 month checkup and just waiting for the results to come back online is nerve wracking. I too am in remission and no m-protein found. The James and the doctors there are fantastic. I can't say enough good things about them.
It has been a year since all this started for me. I am so blessed on how everything is going since then. Hope we both stay in remission a long time!
Hello Steve,
Best wishes to you and your family. Nice to hear that you had a very good partial response. Did your oncologist explain the criteria for CR vs VGPR, since it appears that you have no abnormal cells, and so I would think CR? I had a stem cell transplant in May and also have been told that it was a VGPR, but not sure of cell status at this point.
Thank you for your attention.
Sherry - It is great to hear your good news. It seems crazy that we live less than 20 miles apart, have known each other for close to 20 years now, and our means of communication is via The Beacon! I couldn't agree more, The James and EVERYONE there is fantastic. Please thank Danny again for contacting me prior to my transplant - our chat was invaluable in helping to prepare me for the transplant. I hope Jed and AJ are doing well.
PattyMck - in order to be classified as CR, a bone marrow biopsy would have to be done and determine that less than 5% myeloma cells were present. Because the results of that procedure would not impact the plan for maintenance therapy, my doctors see no need to do it and I agree. I hope your positive condition continues for years to come.
I have had monoclonal gammopathy for several years and have had my blood tested regularly. My last blood test showed an M-spike of 1 and some other abnormalities. My oncologist keeps saying that I am fine, but with more bone pain, blood spots on my arms and other things, I become so nervous. I just want to know for sure If I have MM. I asked to have a bone marrow biopsy and had it today. I am a 67 year old woman who is tired all the time. I think because 10 years ago I was diagnosed with a (non-malignant) brain tumor I am skeptical. Everyone told me at that time that my symptoms were nothing. Am I a hypochondriac? I just want to know why I feel like crap all the time.
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