Yreka, CA; email@example.com
1949 / Class of '52 / Type: IgA Lambda, smoldering / Normal Hem. / Cell harvest / Updated: 1/13
This writing is being undertaken today because I’ve had on-going requests for a little more of my story from family and members of the ACOR myeloma list serve to which I’ve subscribed since shortly after diagnosis. Somehow I just never seem to take the time to sit down and write a bit though I know it is important. So today on a cool, spring Sunday afternoon in April 2004, let’s see what comes. It’s three years since diagnosis so seems a good time to write! If you are reading this be assured that this will be a work in progress, and while I am a computer guru, I often am known to make spelling errors—please forgive and I will try to catch them as I can or you let me know about them! Just where to begin? I hope this isn’t disjointed, but I will write as thoughts come to me, but will try to have some continuity about it!
DIAGNOSIS—WHAT AND WHEN? Let’s start with a diagnosis of Multiple Myeloma hereafter always referred to as MM. I give full credit to early MM detection to my primary physician, an internist in my home community, Bruce Riger, M.D. In March 2001 I went to him and asked him to check my immune system, I’d had six or seven colds since October of that previous fall which was not normal for me. Dr. Riger did some blood tests. In a week or so, he called me back for more extensive blood work because he saw abnormalities in my total protein. I truly give him much credit for his diagnostic skills so early in this disease's manifestation. When I’ve thanked him for his diligence, he just says some times we are fortunate. Within just a few days Dr. Riger called me at work and told me the serious possibility of having MM. I was overwhelmed as most people are when confronted with such a diagnosis. Suffice it to say, I wanted to move forward immediately to identify the extent of my disease.
Dr. Riger, bless his heart, did a bone marrow biopsy (BMB) and after having as many as I have now, I can say it was the worst, and extremely painful. Just a side note here, get your BMB’s from someone who gets lots of experience—it makes a difference!! The worst of it was the sample wasn’t good so the pain was for naught! By the second week in May, I had an appointment with Charles Dibb, M.D. in Medford, Oregon, a hematologist/oncologist.
I feel very thankful for Dr. Dibb’s kind, understanding and conservative approach to the MM treatment in my case. (More on him later and his care for my dear Mother.) While not in a huge metropolis, Dr. Dibb has MM patients and is very up on current treatment regimens, etc. He did another battery of tests—something I was soon to take without out a thought. This included a second BMB and it was much less painful and the sample was good! I went away from his office knowing the likely outcome was MM, but left for a four-day church convention/retreat in the Sierra foothills with a peace that whatever the outcome it would be OK, and that if it was bad I’d do what I could while I could to learn more about this new disease and fight it as needed.
So while I won’t give lots of statistics, here’s some! Yes, I had MM, but apparently stage one or as was later determined, smoldering. Diagnosed at age 52, DOB 1-10-1949 with IgA Lambda Multiple Myeloma. BMB—15-20% plasma cells, IgA, 1430 mg/dL; 1.3 gm/dL M-Spike, Normal Hematology except for slightly raised RDW; normal 24-hour urine. I immediately began searching the Internet for information and quizzing Dr. Dibb—on to the next section!
WHAT TO DO? After I started my Internet quest for information, I definitely decided to seek a second opinion at a research facility. It wasn’t that I didn’t trust Dr. Dibb to give me the treatment I needed when I needed it, I just knew that I wanted to go to a facility where MM was their main emphasis and I would get a cutting edge, thorough evaluation. Dr. Dibb recommended ACRC in Little Rock first, Hutch in Seattle, MD Anderson in Houston, or Stanford here in California if I wanted to stay closer to home. I had already done my research and decided that I’d either go to ACRC or Dana Farber in Boston. Both are many air miles from my home in rural Northern California so it didn’t matter which I chose, but chose to head to Little Rock. This means a four-hour car trip to Sacramento to catch a plane and another 8 to 9 hours before I reach Little Rock. But even after nearly three years I’m glad I made the first trip and each successive one, and there’s been many. Glad for good health insurances, Medical Flexible Spending accounts and the means to travel for medical help.
Will I continue to travel? Likely as health permits, but am comfortable too with choices that my doctors will offer as time comes for further treatment. The entire story of the last years is chronicled below; but I remain smoldering three years later and so far am on no treatment regime. Yes, MM is a dreaded disease and has a myriad of manifestations, but for me it has been kind up to this point. I know the second shoe may drop sometime, but until that time I will continue to follow a healthy lifestyle and trust that I will be ready for the future when it arrives. My faith is a very real part of my daily life, but I am also a realist. I probably eat healthier than I did pre-diagnosis, currently I am trying to lose quite a bit of extra weight that I’ve carried all my life. Am having a measure of success with the South Beach diet. Dr. Dibb has cautioned me not to do anything fanatical. I cautiously have approached some alternative help with OK from my doctors, but anything I do with alternatives I consider complementary and look at all medicine to work together for me. More on my medical journey under other headings.
HEALTH & FAMILY HISTORY—WHY MM FOR ME? It is hard to know where to begin this section. With me, with my environment or with my family history so guess I’ll just start writing! I had a “normal” childhood with all the normal childhood diseases of the 1950’s, chickenpox, mumps, multiple measles, Tonsil and adenoid surgery that during that time were common. I grew up as the middle child—between two brothers, one two years older and one four years younger. We lived in rural Siskiyou County, check that out—right on the Oregon Border in Northern California. My father was a logger, and my mother a housewife. We raised our own gardens, canned and had a milk cow and our own beef and venison each year. A lifestyle many crave now! I was a healthy child and young adult. Moved to the big city, San Jose area and worked for a few years before becoming a missionary in our church.
A few years later, I began having a health problem and eventually it was diagnosed as an overactive parathyroid problem which led to hypocalcaemia and other endocrine issues. In 1978 I had two parathyroid surgeries, the first removed one parathyroid gland that had an adenoma on it, but my calcium level didn’t improve. So I was told I was a sort of a rare case that I must have a fifth parathyroid gland hidden somewhere, likely either in the thyroid or thymus glands. So back to surgery, little did I know that the surgeon would remove ALL parathryoids even those that weren’t diseased. Being a young adult, I didn’t question what would be taken out. But I awoke from that surgery minus all parathyroid glands and the thyroid gland because the fifth diseased parathyroid was imbedded in the last piece of thyroid to be removed.
I struggled for a number of years to get my calcium levels correct and left my missionary work because of the affect of this surgery on my entire endocrine system. Within a few years I was living a quite normal life, but truly using hindsight in my own mind I feel this is when my troubles started that could have led to eventual MM. Ever since that time I have been super sensitive to foods, allergens, and supplements of many kinds. Many medications cause adverse reactions and I’ve had to always take a considerable amount of calcium and Vitamin D since I have no parathyroid glands to help with the processing of what I take in naturally. Currently I am on Calcitriol a synthetic vitamin D that some research may link to a certain amount of anti-myeloma, but that is just that—research.
So that was 1978, 23-years before my MM diagnosis, but who knows how long I’ve had smoldering or MGUS, etc. My guess it’s been with me for quite awhile. I’m going to mention something here that few people have ever heard from me, but I feel it is important now in this context. In 1992 my younger brother was diagnosed with stomach cancer and while he had surgery he opted for no treatment. Just took TPN Total Nutrition, blood products and pain medication. During the last months of his life he tried a few alternative things and asked me to go to a doctor he’d gone to at that time. I promised him I would so shortly after his death I went to a physician that he’d gone to that analyzed blood samples. I didn’t continue to see that physician, but remember well his puzzlement about something in my blood, the cell clumps, etc. Know that it might not have been anything, but now wonder if maybe even then my plasma might have looked different.
Just as an aside, I have O-negative blood and as such during the late sixties while working at the Stanford Hospital Lab started donating blood. Over my life span until diagnosed with MM, I’ve donated a number of gallons of blood! Of course it is no longer an option to donate, but I loved doing it for those years. I know others with MM were frequent blood donors.
I continue in fairly good health, but am plagued with bad knees, something that would benefit if I’d lose all my extra weight! I have aches and pains that likely have nothing to do with the MM, but one can always wonder if it’s the MM manifesting itself! I have few colds and flu bugs now though have one right now! That period of lots of colds just prior to diagnosis must have been a fluke because my immune system is doing its job now. Think I just bragged on too many times recently that I hadn’t had a cold this year so I got one—when will I ever learn!
Now for my family medical history. I won’t bore you with lots of it, but just those things that might be pertinent to my diagnosis with MM. My father died at 78 in an automobile crash, but had been relatively healthy up to that point. I mentioned earlier that younger brother died of stomach cancer in 1992—sorry I don’t know the kind! My mother just passed away last year, from AML—diagnosed only six weeks before she died. Maternal uncle had that disease where the body makes too many red blood cells—I promise I’ll look the name of it up! That uncle died from complications of that disease. Maternal grandmother liver cancer, maternal grandfather CML, fraternal uncle prostrate/liver cancer, and finally we lost a great-niece at seven with complications of ALL. Some of those are likely related to MM, but others not. I lived with my dear mother the last seven years of her life, and it seems ironic that she got this leukemia and went so quickly from it.
No more on this vein now except to mention my current treatment or lack there of: Here are the only meds I am taking as of April 2004-Calitriol, Calcium, Lovoxyl (Thyroid), Celebrex, Toprol XL for blood pressure and occasional Tylenol. Pretty good, right? I take very few supplements—non on a regular basis, and am aware of the need for caution as an MM patient. I also see a homeopathy physician on occasion—again always with the OK of my oncologist.
MY LOCAL PHYSICIANS & ONCOLOGIST I won’t say much here except how much I appreciate my local physicians and the care they are giving me. Bruce Riger my local internist is a super doctor, and I appreciate that he was able to key in on MM so early. Because we are such a rural community most of us go to Medford, Oregon for any specialists. Charles Dibb took such great interest in my Mother, too and while not much could be done he stood by us. He didn’t put her through a heap of chemo that would only have made her last days more miserable. Recently I have gone through a possible uterine cancer scare, and Dr. Dibb recommended Joan Rote for a second GYN opinion. I appreciate so much her interest as well, and the conscious effort to do no harm and what was in my best interest. My main comment in adding this portion to this writing is that you must have confidence in your physicians and if you question their understanding of your disease—see someone else.
MY EXPERIENCE AT THE MYELOMA INSTITUTE Now for this part of this writing! Will try to not make it too long!! Soon after my diagnosis in June 2001 I made plans to go to Little Rock to ACRC, to what is now known as the Myeloma Institute for Research and Therapy (I’ll try to use the term Myeloma Institute for short!). This first trip was setup in short order by a very professional staff. My sister-in-law went with me, and in fact we were in Little Rock on 9/11. You’ll do well to remember that this is a research facility and if you agree to go there you will have a huge barrage of tests, MRI’s, Bone Scans, BMB, lots of blood tests, Bone Density, Echo cardiograms, and the list goes on. The BMB biopsies here are not too bad as they are done by staff that does them all the time. The only one that caused me any discomfort at all was the one drawn for research and the Chromosome 13 and other genetic research, and that was only because of the large quantity of sample needed. The transverse of the clinic and hospital corridors can be somewhat daunting for the first timer, but after a few trips it is old hat stuff. The staff is most friendly and while there are some delays and mix-ups these are minimal considering the great number of patients seen. At the end of the week I saw my doctor, Dr. Annaisse. Though all the tests weren’t back, most were, I was labeled as having Smoldering MM. I had no other symptoms besides elevated IgA and bone marrow involvement that pointed to MM. Because tests showed such hard bones through all the scans (likely because of my heavy long-term calcium Vitamin D use) no Aredia or Zometa was prescribed. In fact, I left with a wait and watch situation.
Turns out I had no Chromosome 13 deletion and no other genetic markers were remarkable. This is research stuff and done at no cost to the patient, but neither do we get the results though they see them! At that time it was suggested that I might like to think about harvesting stem cells while my tumor load was so low for potential use later. We left Little Rock with the thought that we might do that someday. Quite an eventful trip back across the country on 9/15/01. There were very few people on our planes, and we might not have been except that we wanted to get home!
Within a few weeks I was having a conversation with Dr. Annaisse by phone that I had decided that I wanted to do a stem cell harvest now and my insurance was going to cover it. Harvest was set up for December 2001. I was also contacted by Dr. VanRhee about the possibility of participating in a dendritic cell vaccine phase 2 trial that would be starting. This trial has to be half refractory patients and half smoldering like I was at the time. After many phone conversations with Dr. VanRhee and his research staff, I agreed to participate in this trial. I didn’t feel I had anything to lose. Thus started a long year of frequent trips to Little Rock.
In early December, I headed to Little Rock and a friend graciously offered to go with me. I don’t think she realized what a long time she’d have to be away from her husband, but really was only a little over three weeks! The plan was for me to first have a Quinton catheter inserted after a few lab tests to make sure all was still OK to proceed. I’d been approved for a SCT by my insurance, so we planned to harvest and store for later use; but first I had to have white blood cells harvested from which to make the dendritic cell vaccine. The catheter was inserted and once it was assured to be in the proper location—this meant a trip to radiology for an X-ray via wheel chair from the cath lab! Not a little trip! I was then released to head to the aphaeresis part of the hospital-again quite a long trek! This aphaeresis lab would become my haunt for the next week or so. The white cells were harvested quite quickly, a very fascinating process for those of you who have never seen blood removed, cycle through the aphaeresis machine and sent back into the body through the same catheter—though we were assured it wasn’t going back in the same hole it was coming out of!
Once they got enough white cells the next stop was to stop at the chemo room to start the process of stimulating the creation of stem cells so on came the neupogen, and now I can’t remember the other medication that stimulated stem cell growth. This was on a Thursday afternoon. I was to have visits to the chemo room through the weekend with the hope that I’d be ready to harvest on Monday. Got to be good friends with others who were going through the same process during that time. Almost kind of like a competition on who’d be ready first and who’d harvest the quickest. Of course, all in a very friendly way and in camaraderie!
We were told that we might get some pain in our bones, especially in the areas that were heavy marrow-producing areas. Such was the case, but not nearly as bad as the pain I was having at my catheter site. I couldn’t even raise my arm to comb my hair (more on this in just a bit!). I had every confidence that I would harvest well and quickly, because I was in such good health and hadn’t had marrow-destroying chemos. Well… first off, remember my catheter had already been in quite a while—usually they are just placed prior to the first stem cell harvest, but… I’d had mine four days already. The aphaeresis machine alarm kept going off so I had to be careful how I laid back and moved. Got through the first day in just a few hours. Started the second day, and had more problems. Ended up having the Quinton replaced at this time and the day went better. Had harvested about 5 Million or is millions the right measurement, not sure now of the measurement, but it was about a third of what the doctor wanted harvested. I harvested three days and started the fourth, but a sharp tech noticed that I had some extra swelling in one hand. Ended up that they felt I had developed a clot at the catheter site. So, to ultrasound and the end of my harvesting. Not a major clot and didn’t need any therapy for it, but ended the collection a bit premature, although I did get enough for two SCT’s. This taught me a valuable lesson—appearances aren’t everything because one of the men in the aphaeresis room who didn’t seem like a likely candidate got more than enough cells in one day for two transplants, but harvested two. My problem really was that the space that the vein had to traverse between the collar bone and a rib was very narrow. There was localized pain and a clot which led to eventual removal. I’m not a medical person so that might not all be quite proper terminology, but you get the picture! Guess this can often happen with athletes and one of those I’m not, but I do have extra large bones! I stayed in Little Rock a few extra days, but wasn’t long and I was ready to head home. Before I leave this subject, I need to mention how wonderful the aphaeresis lab staff was. Had to get them some extra treats before leaving town! I’ve discovered that it is always a smart move to take goodies! One time I took California strawberries in my carry-on bag! Staff remembers the little things you do for them and they do so much for you.
The next trip would be to Little Rock in February. I went by myself this time because it would be the longest time there. It took the research lab the time between December and February to prepare the vaccine and do all the “stuff” to those dendritic cells to convert it to a vaccine, can give you details on that process, but do know that I was in touch with the lab during this time too. When you agree to be part of a trial, there’s always a certain amount of stuff required that makes only sense to the researchers! But these folks were wonderful and helpful in explaining each step. My vaccine injections were delivered a few days apart and all the shots were administered by a radiologist via injection under ultrasound to a groin lymph node. The first shot was a bit scary, but after that I knew what to expect. Dr. VanRhee was very attentive throughout this process—have never had a doctor hold my hand through a procedure until this experience! Think those of use who were part of the study have developed a very special relationship with him and the research assistants.
I was monitored very carefully for possible reactions to skin tests during these vaccine weeks. Remember well when I started getting a major reaction at the site of one of the skin tests, had to have a photo op! First time some one was interested in a spot on my arm and not on my face. Often wonder what ever happened to those pictures and how many medical students and research assistants will look at them, oh well, will never know!
During the next year I made many trips back to Little Rock for follow-up on the study, each time having BMB, blood work, bone scans and MRI’s. I ended up deciding that I much preferred an open MRI because I touched the edges of the MRI and got rather sunburned arms so because of my size, the open is good and they have some special accessories that make the pictures turn out very good. No more closed MRI’s for me!
The first couple of visits to Little Rock, we stayed in a hotel and enjoyed meeting other MM patients and joining evening support group meetings, but I shortly became acquainted with people in our church in the area that have opened their homes up to me. Their warm, southern hospitality has gone a long ways to making my Myeloma Institute trips less stressful. And, in fact, they’ve become dear friends I’d never have met if I’d not gone to Little Rock. Most of the time during that year I went by myself, but in December 2002 my sister-in-law and brother went with me. I wanted my brother to see what took place in Little Rock and to also be tested for a possible allo donor, if I’d ever need it. Mark, my brother, is my only sibling so my only hope for an allo. We had a wonderful time and did lots of things in the area beside spend four days of testing at the Myeloma Institute! Even got lots of shopping in! For those of you who don’t know the best thing to do immediately after a BMB biopsy is to walk and walk and walk some more (helps with soreness and stiffness afterwards!). Of course, that means shop and shop and shop! I never learn! I always have to buy an extra duffle bag back there to bring my goodies home!
At my appointment with Dr. VanRhee my last day at the institute that December, Dr. VanRhee told us that preliminary tests on Mark’s blood showed that he was likely a very good match for a possible allo! But, as far as I am concerned, better than that is the statement he made next! Of course, I’m certainly not going to hold Dr. VanRhee to it, but he said, “I’m going out on a limb here, but I don’t think you will ever need an allo!” That was welcome news.
I got to wait six months before returning to Little Rock! Went in June 2003 and again had the full battery of tests. Oh, I take that back, not quite as many as the first time, but always the BMB and the MRI’s! And always at least two fist fulls of vacuum tubes. Think the most was about 27 or 28! Again, the last day came the visit I looked forward to—Dr. VanRhee. This time we had almost an hour together and talked of many things. My counts had remained stable through the time since the vaccine injections, in fact for the entire life since diagnosis. There has been little change in any blood counts. There continues to be no lesions on MRI’s and no monoclonal protein in the urine immunofixations or even any protein in the urine electrophoresis. So, it was decided that I would have a year before returning to the Institute. But during that year, I had to promise to faithfully send blood work each month; and if results were either remarkably better or worse, I’d catch a plane to Little Rock. Well, it is now April, 11 months later and the results continue to be stable so I return in June 2004 to Little Rock with another year of stable disease under my belt!
In a discussion with Dr. VanRhee recently when I thought I might have uterine cancer, which fortunately didn’t turn out to be so, I asked him about our trial. He told me these kinds of things take a long time to evaluate because time is what will prove or disprove the trial’s hypothesis (my wording not his!). He did say that of the participants, of which I think there were 28, only two have seen disease progression. Fourteen with refractory myeloma in which the vaccine supplemented other treatment, and fourteen who like myself, had smoldering disease with no treatment beside the vaccine. Please don’t quote me on this because it was just in a conversation. The study will eventually be written up I am sure and at that time I can share accurate details. This I do know that I have very stable disease, would I have had it 26 months out without the vaccine? Who’s to know, but with the hindsight from where I stand today, I’d certainly participate again. I’ve had very little discomfort and while I had to trip to Little Rock often, it’s been well worth the effort. One will never know the “what might have beens”, but this I do know, my MM hasn’t caused many problems and really has been rather kind to me. I’m glad for three years of relatively good health without needing to take anything for my MM.
HOW I LIVE EACH DAY How do I live each day? I am a fairly active 55 year old spinster, enjoying her lovely new home (new to her) in the beautiful little town of Yreka, California! I work full-time as a computer support analyst (application software mostly) for a company that out sources the IT function of Siskiyou County. I work in the Courthouse, and everyday pass a wonderful gold display that includes some wonderful specimens that my dear father found as a young man while working the family mine during the depression—in other words, I am reminded frequently of my roots. I have no children, but after having lived many years away from family, I love living near family now. I have a myriad of great-nieces and nephews to enjoy when I need a kid fix which is quite often!
I have more aches and pains than I think I should, but know that much of that is likely arthritis and not MM. As I mentioned earlier I am working on trying to lose some weight which would help that situation, but we have familial examples of arthritis. I do belong to Lady’s Pace, which is much like Curves that they have in so many cities. I try to get there a few times a week, but should more. I have two dogs and I should walk them more, too. Oh well, I keep busy!
No journal about each day would ever be complete without mentioning that I have a deep faith in God and make efforts to nurture and grow that relationship. My faith has had a profound effect on how I view my MM adventure. And I appreciate the friendships and fellowships that have strengthened my faith. The last year since my Mother’s death has not been easy—I’d lived with her for seven years. But her faith was an inspiration and continues to be as I ponder her life and final, very brief weeks after learning she had AML.
I will continue to stay abreast of the MM community and new advances in disease treatments and care. But I know that my quest will not consume me either. Writing this journal has been good. It has helped with perspectives. Today I want to live each day to the fullest, do what I can to maintain good health, help others with their journeys, and be realistic in all my expectations and hopes.
Please feel free to share this with others who might be on the MM journey. If anyone wishes to contact me, please feel free to do so. I am in no way an expert about anything, but perhaps I can share my hopes and fears and listen to another’s. I have a huge spreadsheet of all my lab results that I’d be happy to share with anyone, but to many they would only be boring! For now, it is a stable smoldering with no obvious disease progressions! Who knows when this story will grow an addendum, but for now I journey on and this is much too long!
November, 2004: I continue to have smoldering MM. This is just a brief update, but I went to Little Rock in June and came back with some fairly impressive number. Particularly in that the plasma in the bone marrow was less than 5 percent. However, my other markers remain fairly stable. I had an upswing in my M-Spike to 1.4 the last time it was taken in October, but the IgA was lower than it was the month before. I continue to send blood and urine to Little Rock on a monthly basis for evaluation that includes Freelight testing each time. I am to return to Little Rock—The Myeloma Institute in one year, that would be in June unless I get much better or much worse!
I had a six-month check with my local oncologist, Dr. Charles Dibb in Medford, Oregon in September and he is in agreement to let it go as is for now and no treatment required. Dr. VanRhee, My doctor at the Myeloma Institute told me when I was there in June that they did have enough of my vaccine to give me a booster if I wanted it, but it would be entirely voluntary and it would take going back there for three weeks. My local oncologist didn’t encourage me to do that so I have decided to let it ride for now. He feels like we shouldn’t rock the boat right now since I am doing so well. Had a little scare just the last week or sow when I though I was getting a plasmacytoma on my sternum, but a CT scan shows that it is just bone. Am not too sure about it being normal—as my local internist feels it is, but I will watch it and check back with my oncologist if I feel I need to do so in a few weeks. One just is likely to be quite cautious and skittish when something “appears” to be abnormal.
As it stands I am three and a half years from diagnosis and feel blessed for the measure of health I have. I have aches and pains and have stopped taking Celebrex and need to lose more weight that I like to think about, but the MM beast is still at bay. Dr. VanRhee in Little Rock says that my disease is being kind to me. Don’t know whether I can go that far, but am grateful that I am able to work full-time and manage my own home. I love being around my large extended family and treasure time with all my little greats of which there are 17.
If anyone has any questions or would like to discuss the vaccine program I participated in please don’t hesitate to call or e-mail me at the address at the top of this story.
December, 2007: Much too much time has gone by without me updating this story, but I’ve been asked for it once again so will add just a few paragraphs now. I am now visiting MIRT in Little Rock once every 15 months and will continue to do so as long as I remain in a smoldering state. I visited there the first week in December 2007 and came away with the news that my disease remains stable and nothing has changed. I was a bit worried when I had a couple of months in the summer of 2007 when lab results seemed to indicate that there may be some MM activity, but this month my counts are just about the same as they were upon diagnosis. Dr. VanRhee continues to be my physician in Little Rock, and he told me this time that we don’t worry about individual tests, but the overall progression. My disease is very stable and Dr. VanRhee has moved me to sending lab specimens every three months rather than every two. I see my local oncologist even less, because unless something worsens it is basically a time of greeting and encouragement. I’ll see him in January 2008.
As far as the dendritic cell vaccine trial I participated in during 2002, Dr. VanRhee says that they are currently completing a report on that trial. He says I am definitely on the list to receive a copy. He did tell me while there this last time that of the 14 smoldering patients in that arm of the study that in the six years since the study began, only one patient has progressed to full-fledged myeloma. A stat that I find remarkable, and I am glad I participated in the study. I’ll never know if that trial is what has actually given me this prolonged smoldering time, but I am thankful for these years of relative calm. I try to live each day to the fullest and not let the thought of MM consume too much of my thoughts and time. I try to keep up with new developments with the disease, but I don’t spend as much time in reviewing information as I did a few years ago.
As an aside here, I’ll just mention that I have had two knee replacements since last updating this story. The first in November 2006 and the last just a few days ago on December 17, 2007. I am finding this last one just a bit more painful, but I am faithfully doing my physical therapy and hope in time all will be well. I don’t miss the true pain from totally deteriorated knees that were bone on bone! Until next time, may all continue as it is at this point, MM markers remaining consistent and my quality of life good. Yes, I’m getting older, soon to be 59. But I prize those years and the quality that I’ve had. Yes, many of my friends are retiring, something I can’t do because I need the good insurance that comes with my job as a Help Desk/Systems Technician. All for now, until next time….
October, 2008: Where does one begin on an update? I continue to do well. I’m not exercising as much as I should be for my knee replacements. The one I had last December had been a bit more troublesome than the first, but that is just common stuff, that happens. My Myeloma journey has continued to be uneventful. My counts last month were just a tad bit higher than when diagnosed nearly eight years ago. So myeloma is being kind to me. I had a scare a few weeks ago, with terrible pain in my right hip pelvic area. My local oncologist was quick to have an MRI. Fortunately my problem was not multiple myeloma or a plasmacytoma, and the problem ended up being a muscle spasm that lasted weeks, and caused severe pain—worse than either of the knee replacements. Will never know what caused it, but like a gait change because of favoring the left knee. So I am still smoldering after all these years. I’m sure that someday I will advance to Staged Myeloma, but for now I’m appreciating each day. Maybe my success was because of the dendritic cell vaccine early in my diagnosis, I’ll never know, but am thankful for each day, month and year I have. I still intend to keep visiting MIRT in Little Rock every fifteen months or so, and my local oncologist twice a year. I cannot become complacent, but enjoy my days. I still work fulltime and have no intention of retiring until I’m eligible for Medicare in another six plus years! If anyone would like to visit with me, please feel free to contact me via phone or e-mail.
January 6, 2013: It has been some time since I updated my story and during that time I have remained a very stable smoldering Myeloma patient. I had a visit to MIRT in Little Rock in mid December 2012. I was fortunate that I was able to see Dr. Fritz VanRhee at MIRT. He has followed me during the years since my 2002 dendritic cell phase 2 trial which was his. (By the way Dr, VanRhee gave me a copy of the published trial as was written up in the British Journal of Haematology, 7 July 2010doi:10.111/j.1365-2141.2010.08286.x - Optimizing dendritic cell-base immunotherapy in multiple myeloma ... led to induction of type-1 and cytotoxic T-cell immune response in patients. I know that's a lot, but just in case you are interested! It's very technical.)
Results of this visit. My MM is stable, my counts are comparable to when I was diagnosed in 2001. For this I am very very thankful--I am still smoldering, nearly 12 years later. Could it be because of the dendritic cell trial, who knows, but I'll take this extended time in which I've needed no treatment at all.
Here are some of the key test results. I won't bore you with all of them because UAMS does lots of tests! IgA 1580 mg/dL; M Component 1.5 g/dL; B2M 2.8 mg/L: IgA Lamda M-protein present; Cystatin C, Serum 1.02 mg/L; Creatinie .9 mg/dL; no M component in 24 hour urine; Hemoglobin 4.66 g/dL; all other hematology normal except high RDW which I've always had; PET and MRI's no MM lesions; Bone Marrow= 12.5% plasma cells on aspirate; 10-12% on core biopsy. Sorry if that's more than I should have posted, but wanted to give the full picture. So the verdict by Dr. VanRhee--very stable disease.
I keep very busy, I am still working and likely will be for many years to come if I'm able. I am a Sr. System Technician and enjoy my work which includes lots of web design and maintenance. I am still single, but for the last three years I have had my elderly aunt living with me. She is currently 88 and has many issues, some more challenging that I would like, but we get through them. She has no children so as long as I am able and she is able to be with me, she has a home. I have many aches and pains, have had some surgeries on my feet and am currently having an issue that Dr. VanRhee is referring me to a local rheumatologist--spots on my legs that may turn out to me some form of scleroderma.
I will try to do better in the future and post an update each time I have a yearly evaluation at MIRT. Thanks for reading all this and if you are in the middle of a smoldering myeloma experience perhaps you can take courage from my story.
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