Myeloma Lessons: Walking The Walk
It is familiar cliché. “If you are going to talk the talk, you have to walk the walk.”
I am not sure of the origin of this phrase, but you see it most often in the context of athletics. Athletes who brag about their skills, the phrase argues, must live up to their boasts.
I had a different topic planned for this month’s column, but recent events caused me to change course and consider the importance of walking the walk.
Since being diagnosed with multiple myeloma, it has been my experience that newly diagnosed patients roughly fall into two categories. There are the “deniers” – those who do their best to ignore the reality of the disease. And there are the “fighters” – those who confront myeloma head-on and assure their loved ones that they will beat the disease no matter what happens.
I am in the fighter category. After being diagnosed, I boasted to all who would listen that I would fight the disease with every fiber of my being. Some of this comes from my natural approach to any challenge. But, by being vocal about my intention to fight hard, I also thought I could help myself maintain a positive attitude while also reassuring my loved ones that everything would be okay.
Walking the walk was pretty easy at first.
Since early in my induction treatment, my M-spike held steady at 0.1 g/dL (1 g/L). This continued through a transplant and for five months post-transplant. Every month as I was awaiting my results, I found myself rooting for the seemingly elusive 0.0 reading. That result would put me in stringent complete remission.
So it was surprising, and a little unnerving, when the results for this past July were posted and my M-spike was 0.3 g/dL. My nurse coordinator urged me not to panic, and I tried to convince myself that this was clearly an aberration. After all, the number was not very high in an absolute sense, and we all know these numbers can bounce around.
But when the next month’s results showed an M-spike of 0.4 g/dL, walking the walk became more challenging. In the months since my diagnosis and all during the steady stream of positive test results, I had continued to caution family and friends that there would be challenges ahead. Myeloma does not go away, and no matter how good a person’s response to treatment, it is virtually certain that there will be a relapse and the need to consider additional treatments.
I did not foresee, however, what seemed to be a rather quick relapse following a transplant. Still, if I was going to walk the walk, I needed to, and did, continue to vow that we would fight on and not give in to discouragement.
For me, a large part of the fight has been to continually research all aspects of the science of myeloma and what treatments might be best in my particular case. My doctor is an experienced myeloma expert, but he has many patients and I only have one.
As I searched for possible explanations for my rising M-spike, I saw studies about a phenomenon called secondary monoclonal gammopathy of undetermined significance (MGUS). In simple terms, this is an M-spike that arises following treatment, either with novel drugs alone or novel drugs followed by a transplant, and that is the result of a different clone than the one present at initial diagnosis. Several studies have shown that secondary MGUS is actually a good prognostic indicator rather than a sign of relapse.
In order to tell whether you are experiencing relapse or secondary MGUS, you need to consult your immunofixation reports to determine what type of myeloma clones you have had. Unfortunately, when I received the news about my 0.4 g/dL M-spike, I did not have access to my immunofixation reports, and would have to wait for my next appointment.
When I first saw my doctor at that appointment, he expressed concern over the rising M-spike. I then asked whether it could be secondary MGUS. We read through the immunofixation reports and found an interesting pattern.
At initial diagnosis, my myeloma was IgG lambda and remained IgG lambda for about three months. Then, immunofixation showed both IgG lambda and IgG kappa clones. A month after that – and continuing through the remainder of induction therapy, my transplant, and the post-transplant period – the M-spike was IgG kappa alone. In other words, a clone different from the M-spike at initial diagnosis.
So what did this all mean?
According to my doctor, this could be either very good or very bad.
If all of this was secondary MGUS, then the news was very good. It would be a sign of a strong, healthy response to treatment – a reconstitution of the immune system following destruction of the myeloma cells.
On the other hand, if there had been a low level of IgG kappa present at diagnosis which had eluded detection, then I might have had a “biclonal” myeloma from the start, and these latest results would evidence that the kappa clone was taking over. This would be bad news, since then the disease would be progressing just a short time after the transplant.
Out of an abundance of caution, we decided to intensify my maintenance therapy by increasing the dose of Revlimid from 10 mg to 15 mg and by adding prednisone to the mix.
The doctor also said that he would consult with the hospital pathologist, who is particularly expert in myeloma testing, and let me know what he thought. For me, this meant more uncertainty, which is not unusual for a myeloma patient. Still, in my mind, I had a new fighting chance and reason to continue to express optimism.
The pathologist said that it was unlikely that I had biclonal disease, but he could not completely rule it out. My next blood test showed a reduction in my M-spike to 0.3 g/dL. My doctor viewed this as further support for the conclusion that what I was experiencing was secondary MGUS rather than the beginning of relapse.
So what does this all mean?
First, it means that I, like all of us, am dealing with probabilities not certainties – something that is more common than we might prefer with this confounding disease.
It also means, however, that there is more to walking the walk than simply putting on a brave face and assuring our loved ones that we will get through this.
Fighting, when it comes to dealing with myeloma, also requires that we take an active part in the plan to combat the disease. Our doctors and the other medical professionals who help us can only do so much. It is up to us to do the research specific to our individual circumstances and advocate strongly on our own behalf.
Andrew Gordon 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 .
Good article, we need more of these fact based columns.
Andrew,
Besides the rising M spike, did you have any other symptoms? In your bike riding do you feel more easily fatigued? If you are asymptomatic, that would be a good sign IMO. Glad to hear that the M spike is going back down after your latest treatment. Borrowing an athletics phrase, this disease throws us a lot of curve balls.
Ron
I'm glad you didn't say WALK THE BIKE. Great article.
Andrew,
I read your column with interest because I have a related story. In 2012 I was diagnosed with primary AL amyloidosis - lambda subtype. It was an early diagnosis. There was no evidence of myeloma at that time. I had a successful autologous stem cell transplant at Boston Medical Center and got a complete response. The follow up treatment for AL amyloidosis is different from myeloma, in that if a CR is obtained, there is no maintenance therapy.
About one year post transplant I had a tiny kappa M-spike - the other subtype. I too was told this was most likely a secondary "reconstitution" MGUS, and based on the literature from MM, generally thought of as a good prognostic sign. The kappa spike remained unchanged and tiny all along, and all my symptoms from my amyloidosis resolved.
Then this past summer, 2 years post transplant, I developed bony pain, and one thing led to another. I was found to have at least 12 bony lesions, mostly in the axial skeleton (skull, spine, pelvis). The tumor biopsy shows kappa subtype plasmacytoma. Even though two bone marrow biopsies have been normal, the presence of multiple plasmacytomas wins me the diagnosis of multiple myeloma, which of course calls into question my previous diagnosis of AL amyloidosis. My kappa M-spike has remained unchanged and tiny, therefore "oligosecretory". Weird, huh?
I went to Dana Farber, where Dr. Laubach is my myeloma doctor. I am in the middle of 4 cycles of dex/ velcade/ revlimid.
The big question is now the same which you posed - what does this mean? Does this kappa spike and now multiple kappa plasmacytomas actually represent undetected polyclonal disease from the beginning? That would be bad, because that would mean the kappa clone is resistant to melphalan and another SCT would not help me. Or did this clone only show up after my SCT in 2012?
In order to try to answer this question, Dana Farber has all my slides and blocks from my initial bone marrow biopsy in 2012, and they repeated their own bone marrow and sacral tumor biopsies three weeks ago. They are doing some fancy lab tests with their basic scientists to hunt for any evidence of this kappa clone in 2012. I expect result this week sometime.
If there is no evidence of the kappa clone from 2012, I will likely have another auto SCT in the winter. They've already booked my stem cell collection for December just to save me a pheresis slot.
Tracy
I had been thinking a lot about these last few days about the different catagories of myeloma patients too. After reading about people describing their views and experience on the Beacon and people I have met and talked with who have other cancers, I see two categories that stand out to me, and there are some other as well.
I see some people who are very fortunate to get their diagnosis of myeloma early before any of the real CRAB symptoms manifest themselves and affect their quality of life. The discovery of myeloma occurs through some other testing or a routine physical. At this point, their quality of life is as good as it has ever been.
For some of these people, it is hard for them to understand just what the ramifications of a myeloma diagnosis means, and they are in denial. They have not had to confront it face to face yet. They start the treatments and are very taken aback and upset by how inconvenient it is -- the side effects of the drugs and what it does to their quality of life, and are angry about it and question if all this is really necessary. They refuse all or some part of their treatment because they do not like it. Or gravitate to the alternative medicines therapy that do that are easier to tolerate and promote the false promise cures.
Then there are other people in my category. I have come to realize that my attitude and approach to my myeloma was sharply influenced by my experience in 2011 when I was diagnosed. A few weeks before my diagnosis, I was swimming 3000 to 4000 yards three times a week and biking 30 to 40 miles on weekends. I finally had to back off the swimming because the rib pain was making stretching my arm out painful. I was probably already in stage 3 at this time, but was seemingly healthy and could do more physical exercise than most people I know. This is why I caution people who pursue alternative therapy alone and thinking they are doing great that feeling fine means nothing.
In a very short time things deteriorated rapidly for me. Just a few days after my first BMB my kidneys started failed rapidly and I went to the ER where I was admitted for a week to the hospital. Severe back pain rapidly developed and it was a lot of pain to just walk a short distance. I was being moved around in a wheel chair. I had never been in the hospital before and I was put on the oncology floor.
That was a very frightening experience that to this day still shakes me up thinking about it. The floor was full of people who were on their way out and had the look of death. You could see in it the eyes and their hollow stares looking back they knew they had little time. I saw the same look in one of my coworkers earlier, who was had been cheerful and positive just before he died from colon cancer. I learned later that, at the time I saw that look, he had just been told there was nothing more they could do treatment was being stopped.
During that week in the hospital, it was routine to hear people screaming in pain. One man was in a state of dementia screaming all night for someone to help him. One of my roommates was a young man who had bone cancer and was being treated with a very tough chemo treatment over several weeks that was just wiping him out. His mother told him they gave about a 20% chance he would live.
I managed to get up and walk around the floor some to get some exercise. I was the only person in my wing that could do that. I felt I had to do whatever it took to get out of this place or I may never leave. My quality of life was already in the gutter and I would have to fight my way back out.
So my view on the treatments that were started and they side effects and inconveniences was I would do whatever it was going to take to get me out here and not complain about it or argue with what my doctors wanted to do. This was a serious situation and they are trying to save my life. Time to explore alternative therapies and doctor shop till I found someone who told me what I wanted to hear? Forget about it, I need immediate results and quickly. For me that was Velcade Dexamethasone and it worked.
Ralph – Thanks a lot. I try to mix it up.
Ron – No other symptoms. Only fatigue is Revlimid-related. Exercise seems to actually help. I consider that a good sign as well.
Coach – Never walk the bike; that is sacrilege!!
Tracy – That is quite a story. It shows how tricky this whole secondary MGUS thing is. I am very much interested in the outcome of your testing and the conclusions of Dr. Laubach. Please keep us updated on your progress.
Eric – Very insightful comments. I am surprised by the many parallels between our experiences. I too was active before this hit me; did not understand what I was experiencing when the symptoms hit; was in the hospital for several days and saw/heard some of the things that you did. And, like you, I started treatment (VRD) immediately and never complained about the inconveniences or side effects.
Strange Request:
Since you work for the federal government, I'm making an assumption you live in the DC area. I live in the DC area. I have had a bad track record with doctors for MM. Several times, the doctors I liked moved from the area. I have avoided looking for a new doctor. I hate to start the whole process over again but, I know I need to have my numbers checked. It's been 6 months.
Anyway, could you make a suggestion of a doctor? I would like someone who will work with me to make a decision and be open to opposing opinions. I would like someone who is younger than me and plans to stay in the area and preferably works in a research hospital.
Eric,
Perhaps it is those that are diagnosed later rather then early that are the ones in denial. I personally knew there was something wrong with me prior to diagnosis. Not knowing what. It was on my own insistance that i was further tested. Strangely enough it was a relief to know that my feelings of "i don't feel right were not in my head" so to say those who are diagnosed early are in denial, I am one of those and i have not been in denial once. It is those around me that are in denial.
Andrew, all the best with your future bloods.
Vic
Mary – Sorry, but I work for the state government in Pennsylvania. However, I did see Dr. Huff at Johns Hopkins in Baltimore for a second opinion. She is an excellent doctor.
Vicki – An interesting perspective. I guess that it is not so easy to categorize people; I think it is more of an underlying personality trait. In one of my earlier columns ("Was It A Good Day Or A Bad Day?"), I talked about knowing that something was wrong and the "relief" that I felt once I got the MM diagnosis.
I have had a somewhat similar experience. After finding a large plasmacytoma, it took awhile to get to the diagnosis of multiple myeloma because I am completely non-secretory -- light chains, nothing! After doing the standard VRD and stem cell transplant in February 2013, I had a CT - MRI in June, CT-PET in September, and a bone marrow biopsy. What it showed was that all of tests were very good, but I still had 5% bad cells. I have no organ involvement, no bone involvement since the initial lesion, Red count is good ... everything.
Because I am non secretory, my myeloma specialist said monitoring me is difficult. Although I went from 20% cell to 5% cell, she was not pleased initially. She wanted 0. What I got from her #2 guy at the time was that they think I have "reverted to MGUS" and he described that as the best possible scenario. He told me he had patients who did the same thing that were around and doing great 10 - 15 years later. My specialist said she was not sure, but she could say that if I walked in her door tomorrow and was tested I would not have multiple myeloma.
One thing of concern is that the only monitoring of me this year is bi-monthly blood tests. I will not see my specialist until January 15, last time was January, and she told me that I was doing well. Get blood tests, let someone know if I feel bad/different, but that was all they really could do.
So far all blood tests are fine and I am moving forward. Does this even sound right??
I am also on Maintenance Revlimid, 10mg 21 days out of 28. Now on 17th cycle.
Vicki,
We are talking about too different things. What you say is true in that there are many, if the majority, of myeloma patients who have signs and symptoms that something is not quite right, but do not know what it is. Many people, myself included, just didn’t go to the doctor unless I was having problems that were getting to be fairly troublesome.
In the year before my myeloma diagnosis I was in denial or just did not see that I had been living with a sinusitis infection for over a year. I thought it was just allergies, another common cold, etc. It took people around me to make me realize that having trash cans full of Kleenex year round is not normal. They were right. I finally went to see my GP, which lead to an ENT. I had deviated septum and surgery to correct it. It fixed the problem. I know what normal sinuses are supposed to be now. I lived with the problem for most my life till that surgery.
There have been many stories of people's experiences with myeloma symptoms on the Beacon with trying to find out what is wrong with them. They are not in denial that something is wrong, it's just their medical team is having a really hard time making the correct diagnosis and much has been discussed about that. A few years ago I read that, on average, it took 6 months and three visits to the GP doctor before a myeloma diagnosis is made. Some will be less than that, some more.
This is not denial, just difficulty finding the root cause of the problems and the frustration that goes with that. And most of these people are relieved to finally find out what the problem is, even if it is grim news.
I see this as a third category of people who enter the world of being a myeloma patient. These people are having problems that are starting to affect their quality of life, that is why they keep pushing through the medical system to get answers. And since they are staring to experience CRAB symptoms, most tend to get on to taking action since they know they have problems, even if they are not serious enough yet to go to the ER or be admitted into a hospital.
They feel it physically, they are not in denial about it, and are ready to do what it takes to get back to their normal self if only for a while.
The category of people I was writing about earlier in this thread have not experienced any real degradation in their quality of life from CRAB symptoms. They have not been pushing their way through the medical system to find out what is wrong with them because they are feeling great, they do not know they have a problem. Their myeloma is discovered though some routine lab testing for some other minor problems and they seemingly feeling fine, so they are having trouble comprehending what this myeloma thing means for them and do not want to be bothered with it and starting treatments that are going to make them feel worse when they are currently feeling just fine. “Aren’t people supposed to feel bad when they have cancer? I do not, how serious can this be and is all this really necessary?”
But I also see many in this situation that do take the myeloma diagnosis seriously, perhaps a fourth category of people, understand what it means for them, and are very proactive with their doctors and treatment plans. There are a number of Beacon contributors who research and track myeloma developments closely and are very knowledgeable on current events and proactive with treatments, testing and monitoring. I was surprised, not in a negative way, to learn that a good number of them have MGUS or smoldering myeloma. They are not in denial and ignoring their situation and being proactive with their health care treatment.
Great column!
I am always amazed at the medical details all you patients seem to know. My boyfriend was diagnosed with MM in January. Fortunately, he is in remission after Revlimid / dex / Velcade (M-spike is 0).
If his hematologist has ever looked at those lambdas and kappas, etc., he's never mentioned them to us. Are those routine tests?
Conny – M-spike and immunofixation should be routine tests at diagnosis and at regular intervals thereafter. Your boyfriend should ask his doctor about getting copies of his results and discuss what they mean.
Eric, I was one of those patients that was diagnosed following a routine physical who had no prior symptoms. With me, the trigger was an unusual urinalysis. My urine showed excess protein. Since I was physically active, I thought it was just excess creatinine that spilled out due to my exercising. I was sent to an urologist who did a 24 hour test and he told me that it was not creatinine but a different type of protein. He then told me about MGUS and MM but said that, since I was in such good health otherwise, they would just monitor it and look at it again in a year.
So a year later I went back and the protein level had increased so I was then sent to MM oncologist. They did all of the MM tests, including a bone scan, and found some lesions on my hips and femur and noted that I was both anemic and had a low white count. My reaction was not surprise or shock, since the seed had been planted by the urologist the year before and I had done some internet research. I wanted to know when we could start treatment as I wanted to beat it back before it got worse.
I have tried and have been successful in keeping my life as normal as possible despite the treatments and even increased my biking activity as way of fighting back. I had a set back in 2012 with meningitis and C. diff, which was the result of my weakened immune system, and was hospitalized for 4 days. As a result I was put on IVIG infusions, which I still get.
I am not in denial, but consider myself fortunate to be able to go on with life. I am going to try and be as active as I can for as long as I can. I am recovering from open heart surgery and plan on racing this spring as I am having a TT bike built for me.
Have I had degradation in the quality of my life? Some, but temporary, and thus minimal based on what others have experienced. However, I am not in denial as I realize that a relapse – degradation is ultimately likely. I just try and put it out of my mind and concentrate on living life to its fullest for as long as possible.
Ron
Thank you so much, Andrew! I'll encourage my boyfriend to get copies of his results, but he's one of those guys who do as the doctor says and otherwise just get on with their lives. I'm typically the one doing the research.
Ron,
I have read a lot of your posts over the last few years. Well said, and from reading your posts I see that you have been taking your myeloma situation head on and being proactive with dealing with the condition. I did not mean to imply that all people who get their myeloma diagnosis while not experiencing any CRAB or quality of life issues yet all go into denial and ignore the problem. But I have seen a tendency that those who do tend to be in that situation.
In the last few months I have gotten really perplexed at times at how people deal with cancer in often illogical ways and in a denial-of-reality mode that Andrew mentioned at the start of this thread. I know someone is dealing with prostate cancer. Before this developed, he had very opinionated beliefs, many of the negative, about the medical system and especially “conventional medicine”. His doctors told him the treatment plan they wanted to do and he actually said he took offense to it as being too invasive and he knew better. He simply did not believe them and refused part of the treatment plan simply because he did not like it.
He is not doing well. He then got a second opinion from a respected oncologist, going in fully expecting they were going to agree with his views and confirm his beliefs. That oncologist did not tell him what he wanted to hear and affirmed the opinion of his first. He was miffed. He has been pursing ineffective alternative therapies for what probably could have been a curable prostate cancer condition. I feel the mistake he has made will cost him his life, and that he is in denial about that. It is always somebody else’s fault.
A friend of mine who is a doctor told me about the parents of a young girl who had a cancer I do not remember, who came to their hospital. Apparently, from the time of initial diagnosis, these parents never pursued any “conventional treatment”, believing it was all poisons that would only kill their daughter, and they went straight to alternative medicine therapy. They did not even go to a regular oncologist for monitoring.
So the alternative therapy medicine does not work and by the time they go to hospital their daughter is in really bad shape and is in the late stages near death. The type of cancer did have a success rate for cures, but who knows in her case -- she was never examined and assessed early on. So these parents are hostile, argumentative, and fight with all the hospital staff, saying that they do not know what they are doing and espousing their alternative medicine views. The staff tried though all of this to do their best, but the daughter died.
I wonder with such strong beliefs in alternative medicine, and a hostile view of conventional medicine and chemotherapy and radiation that they stuck with to the end, why they went to the hospital at all. I have to wonder if it was because they were looking for someone else to blame for killing their daughter besides their own bad decisions. Gives them plausible deniability in their own minds.
And yet another case, of divorced parents dealing with their daughter’s cancer. I met the father. The mom is a big proponent of holistic alternative medicine and does not like conventional cancer treatment. But as a “compromise”, he convinced the mom to start treatment cycles with their daughter. They got really good results and better-than-average progress. Lab testing showed before she had even completed all the cycles that she was in a remission state, but the doctors wanted to finish all the cycles. Mom insisted on not doing that and had the treatment stopped and went to alterative therapy. It was dad’s turn to compromise.
Their daughter has relapsed and is not doing well now. Would finishing the cycles have made a difference? They will never know now. The dad is really upset.
Eric,
Those are sad stories indeed. However, the type of deniers who do not trust conventional medicine are outliers and in the small minority. There are people who refuse to get their children vaccines because they are convinced that vaccines will lead to autism. They refuse to accept case studies that show no links. This is a belief system that is based in part in a lack of trust of institutions not just the health care system.
The Internet puts out unfiltered information, which is generally good since it allows people to make their own decisions on issues. However, the deniers are not looking at all sides and will latch on to anything to reinforce their beliefs. Thus, you see it in the humans-cause-climate-change deniers, the smoking-leads-to-cancer deniers, and a host of other off the wall belief systems.
The Internet needs to be free and open, but keeping it that way means that individuals need to do a better job of filtering fact from pseudo fact.
Sorry for soap box.
Ron
Hi, Andrew!
Thanks for the excellent article. I appreciate it! I,too, like to know the facts and work with my doctor and medical team in the fight against mm. I've always been a peaceful-minded person, but this mm brings out my warrior side, which helps me every day.
Sylvia
Eric, I very much appreciate your thoughts and am learning so much from experiences like yours and others who have been through treatment.
I would just caution against any implication that those without CRAB symptoms who do not undergo treatment are somehow either "in denial," not properly educated about their disease, or choosing not to follow the instructions of their physicians. By definition, someone with an abnormally high plasma cell percentage and/or M-spike, etc., who does not have any CRAB symptoms (or repeated infections or neuropathy) is "smoldering" or "asymptomatic," and the standard of care for those individuals has been, and generally remains, to "watch and wait" (i.e. withhold treatment).
There are clinical trials looking into whether this approach still makes sense, and there are exceptions to the general rule, but it is a fact that patients can smolder for many years without receiving treatment, and to my knowledge there is no convincing evidence that early treatment of these patients improves either quality of life or overall survival.
I am one example: diagnosed in September 2009 with "high-risk" smoldering myeloma, I have spent the last 5 years exercising nearly every day, working full time, raising a child and travelling extensively without having received any treatment to date other than quarterly Zometa. I have my blood checked every 1-2 months and I travel to UAMS in Little Rock every 6-9 months for more extensive testing, but despite my high protein numbers and plasma cell percentage, I have been told both by my doctor at UAMS and in a recent consultation at Dana Farber that treatment is currently not necessary.
That may change soon, and it's not easy to "watch and wait," but I am grateful for these 5 years without pain, fatigue, neuropathy or the many other possible side effects of treatment. Of course if I was told that the treatment was likely to cure me, I would sign up tomorrow.
Sorry if this is taking the conversation off track, but I wanted to make sure that other smolderers don't feel that they are somehow insufficiently proactive if they delay treatment.
Jason
JasonH,
You are absolutely right that often the best thing to do, based on a medical opinion of the oncologist / hematologist treating a patient, not my own, is to watch and monitor, and immediate action and treatments is not necessary, especially with MGUS or SMM. And most people in this condition do take it seriously and not just walk away from it. At this time, there are not necessarily clear guidelines on the approach to take, so second opinions from another professional can be meaningful and the patient may have to decide what direction to take.
But I trust in the medical professionals who are treating me and realize that what I want to hear from them and what I am going to have to do to fight this disease are not necessarily the same thing, which is like the vast majority of people. Like Ron said, there is a minority of people who have deep unfounded suspicions and mistrust that extend beyond just medicine, and the psychology of that really puzzles me. Especially to some like me who is an engineer and has had lots of education in the sciences through my life.
People are free to do what they want, but it really saddens me when people who have these beliefs are affecting the outcomes of the children they are responsible for and do not accept accountability, or are in denial about the consequences of the decisions they make for those who do not have the ability to make them for themselves yet. I guess in the last few months I have seen a bit more of this than normal, and it has gotten to me some. Andrew’s opening point about denial of reality hit home with me.
I am glad you are doing well with the management of you myeloma and see that you are have a very good medical team handling your treatment.
Whew, this discussion has taken an interesting turn. But it highlights my point well.
It is important when dealing with this elusive disease to take action to educate yourself, to be an active participant in making your treatment decisions, and to follow through by monitoring your results.
The discussion reveals that, because of the variability of the disease and the many accepted treatment approaches, ranging from multiple transplants followed by maintenance therapy to actively monitoring the disease without treatment, the definition of fighting the disease is itself variable. The important takeaway is to be engaged the extent necessary.
Some of us can do this on our own and others may need help from a caregiver or a friend. As illustrated in some of the examples mentioned above, failure to fight can have serious consequences.
Andrew,
Thanks for the insightful explanation on secondary MGUS. With sMGUS, how would treatment or maintenance go? Would one still need to receive maintenance drugs in low dose, is there any difference in the way a doc would treat? If the low mspike remains the same, should you even want to continue with maintenance or stop to see if, without drugs, the mspike would go up. And if it goes up, is it still sMGUS? I am still bit confused.
Lileng
I think the way to conceptualize is that, if the M-spike is truly secondary MGUS, then it is benign and can be ignored when assessing disease status. So in the absence of an M-spike which is the same as the clone at diagnosis, you can be in complete remission if the other criteria for CR are satisfied.
But that does not necessarily answer the maintenance question. Many myeloma experts recommend some sort of maintenance therapy even if the patient has achieved CR following either induction-type treatment or induction followed by transplant.
To Andrew Gordon:
Great column, I learned a lot although I as an MM patient have read all I could find during my post-SCT recovery in semi-isolation. And despite having a medical training. Thanks, and keep us updated. I am new here but will certainly read your follow-ups.
To Eric Hofacket:
On pain. I had bone lesions when I was diagnosed, and 2 or 3 of them started hurting just when I was going into treatment. When treatment started, including acyclovir prophylaxis against viral infections, I really got pain, in the groin. After a week or two I couldn´t walk without a stick, and I got a stroller/walker, the kind used by the elderly. I had it in my car, just in case, but turned out I could get around with the walking stick, but only a few hundred yards per day. Now pains got so bad it even hurt when I moved in my bed. Denial for a day or two, then I got into the fight mode, described by Andrew, and for the same reason, it is my nature.
During the first month the bone pains from ribs and chest bone gave away, and as my pathological protein dropped. But the groin problem was still there. I pushed my doctor to have a hip X-ray, came out OK, nothing there. Then I really started reading. Acyclovir is broken down to uric acid, the culprit in gout. And I am a gout guy.
So I started treating myself with what you should do, drink a lot (even in the middle of the night an extra glass of water or two; don´t miss the sleeptime uric acid excretion which doesn´t happen unless you dilute the acidity of your urine) and some diclofenac or similar, and then some allopurinol, really really low dose. And it worked! I was on a huge dose of diclofenac, 200mg x 2-3, for 3 weeks or so, and one should only go to such high doses under medical supervision. But I am mentioning the dose as a measure for you to know how bad the inflammation and pain was. My pain was obviously from gout caused by the acyclovir breakdown to uric acid adding on top of the uric acid coming from the dying large load of tumor cells (lots of DNA etc being broken down). At 3 months I only needed a low dose of the allopurinol + sticking to the extra water intake, an extra glass of water every time I went to the bathroom (also in the night) or had a meal.
So, if someone has pains (and gout pain can be excruciating!) consider what I experienced. And that gout can put its claws into any joint or tendon of your body (in my case the muscle "tendons" from the hip bone to the huge muscles on the inside of the leg).
My take on this is that our disease, and the treatment of it, is so variable/individual = complex that we really need to exchange views and it is not self-indulgence to read up as much as you can. Go for the traditional medicine/expert medicine, and don´t expect every doctor to know everything, you can add a lot yourself, as Andrews post shows.
I am in full remission now, but I keep on gathering information so I am prepared if I get a relapse. I just do it at certain times, so I don´t get too preoccupied, or even obsessed, with it. I know one guy who has been in remission for more than 15 years. I am not counting on that, but it gives some hope for the future, as does the rapid development in treatments.
Erik,
Thanks for the comment. The point that you make about acyclovir is interesting. I took acyclovir all during induction and post-transplant. Although my doctor said that I no longer need to take it, I have been continuing simply because I had not exhausted my supply.
I have had some relatively mild pain issues that might be traceable to acyclovir, now that I read what you have written. I think that I will stop it now and see what happens.
It is true, as you say, that we can learn quite a bit from each other. Thanks for the tip.
Well said & very informative. Generally we all need to educate ourselves on this disease while at the same time becoming experts on our own specific conditions & results. Thanks for writing this.