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Me vs. MM: The Beginning

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Published: Dec 15, 2011 12:47 pm

So why name this column “Me vs. MM”?

Because I basically consider myself at war with multiple myeloma, and my philosophy is to battle it as best I can.

I realize it might be more appropriate to name it “Us vs. MM”, since ours is definitely a collective effort that includes family, friends, doctors, nurses, and many others.

But, in the end, I just felt the personal part of the battle – the “me” – is too important to leave out.  In the end, I am the one who is going to have to translate the collective effort into my defeat of my specific case of myeloma.

(And, to be honest, I also think “Me” sounds better than “Us.”)

Each month in this column, I hope to share experiences, observations, and perhaps a bit of humor that may help others in their battles with multiple myeloma.

Over the years, I have learned that people generally have similar anxieties, concerns, hopes, dreams, and joys.  So it often helps to know that others share the same feelings, that there is someone traveling a similar path, that you are not alone.

With any luck, some of what I write will connect with a few people and perhaps provide some comfort.

So given that, please allow me to introduce myself.

I am 53 years old and had been relatively healthy my entire life.  I am 6’1″, have maintained my weight around 180 to 185 pounds throughout my adult life, and exercise regularly, including biking, strength training, and hockey, sometimes mixing in swimming, tennis, or various other activities.

I eat well, my cholesterol levels are excellent, my blood pressure averages around 115 over 75, and my resting heart rate is in the mid 50′s. Until recently, I rarely saw a doctor except for an occasional injury.

Overall, I figured I was doing a pretty good job of taking care of myself, and I was starting to think about all the things my wife and I would be doing as we became empty nesters heading toward retirement.

Then, about a year ago, WHAM! – life took a right turn.

I probably would not have discovered I had multiple myeloma if not for my being a regular blood donor.  In the fall of 2010, my iron levels dropped significantly and I was unable to donate.  I made an appointment with my doctor, and after some blood tests, he indicated I had anemia and referred me to a hematologist.

My wife and I met with the hematologist in January 2011, and after an additional battery of tests, we received the news that I had cancer.

At this point, the doctor gave us a brief description of the disease, indicated survival was about two to three years, and gave us a stack of information to take home and read.  Karen and I were stunned and were barely able to make it home before we completely broke down.

My next appointment was a week later, and fortunately, I had been able to do considerable research before meeting with the doctor again.  He indicated he would like to start me on treatment immediately with Revlimid (lenalidomide) and prednisone for four cycles, followed by a stem cell transplant.

Based on the research I had done, I realized my doctor was not necessarily current regarding my disease, so I said that I would like to get a second opinion before committing to anything, and I was referred to the University of Michigan.

What an adventure that turned out to be.  On the day of my appointment, Michigan had the worst ice storm I have ever experienced.  What should have been a two-hour drive took five hours, with the highway actually shutting down for an hour at one point so it could be salted and cleared of the countless cars that had gone off the road or been in accidents.

Arriving three hours late amid all kinds of chaos, I discovered just how committed and caring cancer centers and their staff can be – a sentiment so many others have also expressed.

In the end though, what a blessing getting to the University of  Michigan turned out to be.  I met with Dr. Jakubowiak, a leading multiple myeloma researcher, and I was able to get into a clinical trial testing “CRD” – carfilzomib, Revlimid, and dexamethasone (Decadron) - as a treatment for newly diagnosed multiple myeloma patients.

I started treatment in March, and after one month, I reached a partial response.

After two months, I reached a very good partial response.

With those results, I had expectations of reaching a complete response quickly, but my response slowed thereafter.

I have recently completed my initial eight cycles plus one maintenance cycle, and I am currently at a near complete response.  My IgA counts continue to drop, however, so there is still hope for that illusive complete response.

During this time period, I have also gone through stem cell collection so that I have the cells if the need for a stem cell transplant arises in the future.

While there is nothing good about having cancer, at least I have been fortunate that the disease was dis­covered relatively early and the only symptom I displayed was anemia.  I have no bone lesions or deterio­ration, no elevated calcium levels, and no kidney issues.

Furthermore, I have none of the chromosome abnormalities typically associated with poorer prognosis.  As a result, I’ve been able to remain active, and the only concession I really had to make is giving up hockey, which I have played consistently since my youth.

Life now is a bit different than before, definitely filled with a lot more uncertainty, and I’m certainly going through a lot of audio books during all the trips to the University of Michigan.

However, I feel there is hope, and I will continue to battle as hard as I can.

Peace, and live for a cure.

Kevin Jones is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column will be published once a month.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .

Photo of Kevin Jones, monthly columnist at The Myeloma Beacon.
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42 Comments »

  • Nancy S. said:

    Best wishes to you and your wife and family. It’s nice to hear from those whose diagnosis is early enough along, that they have avoided some of the health issues associated with MM … bone damage, kidney issues and more. Staying as physically active as possible just has to help one battle this formidable foe…I always think that having good blood circulation will help you to clear toxins of all sorts from it. I used to donate blood also…they did not catch my myeloma that way but I did notice in retrospect that my blood was getting rather viscous!! I couldn’t donate the whole 500 ml. one time…should have been a warning signal. It would be nice if the donated blood was tested by electrophoresis for the ‘M’ protein, but apparently it is not done. Blood cancers can kind of sneak up on you…lots of bruising, infections, etc.

    Anyways, Have a happy holiday and drive carefully on those winter highways!! Thanks for sharing your story, it’s very encouraging!

  • Larry Stroupe said:

    Hello Kevin,

    I have a family member (who also happens to be my best friend) who is 36 and was diagnosed with MM in July of this year. She has currently began preparing for an auto stem cell transplant, we’re now waiting on the go ahead from insurance. I have provided a link to her Facebook group above. It’s aptly named “Aimee’s Updates,” and will give the “low down” on her transplant. Feel free to join the group. We are always willing to share knowledge and learn with others going through this battle. I will be following your column best wishes in your journey.

  • Sean Murray said:

    Thanks for sharing your story, Kevin! I turn 53 years old in a few days, have been fighting MM for 3 years, and I’m looking forward to your unique thoughts and perspective as you tackle MM. Have a happy, safe and healthy holiday in the Wolverine State. Picture me holding up my right hand and pointing to South Lyon, the Michigan town from where my mother and her large family hail. Be well!

  • Julia Munson said:

    Great article and confirms again that healthy people are also vulnerable to blood cancers. I’m so glad you have no chromosome defects!! Great advantage.
    Julia

  • Steve Hirschorn said:

    Kevin,

    I am thrilled to hear that your treatment is going so well for you.

    I am a 62 year old male and was 57 when I was diagnosed. I am 53 months out from diagnoses

    I was diagnosed with MM on August 16, 2007. I was having some symptoms that were very defined, yet I had not a clue that I had anything wrong let alone CANCER.

    My symptoms were as follows: In late May, 2007 I had pneumonia for the 3rd time in 9 years. I went to my Internist for a follow up after I was better and she told me my blood work showed that I was anemic and she recommeded a supplement and food that was high in iron. I went in for a colonoscopy since it had been 5 years since the last one.

    My gastroenterologist is a very close friend of mine so before he did my treatment I told him of my symptoms. I told him: I had a very tinny taste in my mouth, I had thirst that I could not quench, i had severe cramps in my legs, I had severe headaches, and I had severe sharp pain in my stomach. He expressed great concern and said I should get some additional blood work.

    After the colonoscopy I got blood work done. On Monday August 6th he called and demanded that I see a nephrologist immediately. He called in a favor and the best nephrologist in Kansas City agreed to see me. When I saw her at 4:30 the next day she advised me that I was in acute renal failure! She said that she would do a couple of other tests and would get back with me by Friday August 10th.

    When she called me at work on Friday she said that her feeling was that I had multiple myeloma. My first thought was I could not possibly have a skin cancer! I had never heard of MM. She then told me she would set up an appointment with oncologist and he could not see me until August 16th. My nephrologist called me at home on Sunday night and said that the oncologist would tell me to get a bone marrow biopsy after he saw me, so being proactive the nephrologist told me she would call a hospital on Monday AM and had an appointment for 4:00PM for the Bone Marrow Biopsy.

    I had a scheduled appointment on Thursday August 16th and that is when I realized I was now in the Fight of My Life! The protocal was going to follow what the consensus was for MM with the best cancer centers in America. I have IGA MM which is the most agressive strain. My % of cancer in my blood was 89%. The goal was to get me under 6% and then do a stem cell transplant with my own stem cells. We were also going to have to think about a 2nd transplant after 100 days.I was put on a “cocktail” of dexamethasone and thalidomide.

    The calendar was set up and we were going to shoot for a transplant on November 29th.

    I did not do well on the “cocktail” as it made me feel like I wanted to jump out of my skin and could not put sentences together that made sense. It was awful and they reduced the thalidomide from 200 mgs to 100mgs and I was better. I had my transplant and the melphalan chemo drip before the reentry of my stem cells. I did not have to go through a 2nd transplant as I was a GREAT RESPONDER to all that was done.

    I was never told that I had certain amount of time to live. All my doctors replied to my question of how long I had to live by citing other patients they had with MM. It was always 8 years and above.
    I am in complete remission after 49 months post transplant.

    I will end this by saying there is no concrete time frame for people with MM and their death. Everyone is different and they all have to fight for their lives each and every day.

    I am going to end this by saying each and everyone of us has to do everything they can until a cure is found.

  • Julie Visner said:

    Wonderful article Kevin, and your story mirrors so many of us battling MM. Seems we’ve all previously taken great care of ourselves, and MM just comes on suddenly and blindsides us! When you mentioned Michigan, I immediately thought of Phil Brabbs and his wonderful MM blog, “mm for dummies,” as he’s in Michigan too. Perhaps you have already connected with him, but just thought I’d mention him.

    I’ve been on Revlimid since Jan 2010, successfully survived my autologous SCT and have been in full remission since Aug 2010. (Maintenance Revlimid ongoing)

    Good things are coming your way Kevin!

    Fight on MM brothers!

    Julie from CA

  • Pat Pendleton said:

    Welcome to the Beacon community, Kevin. Glad to hear that you are thriving and I look forward to hearing more from you.

  • Dan D said:

    Hi there Kevin

    It does seem that your prognostic indicators are all good — and that is great. So why were you advised to receive treatment rather than just observation? For example, moderate anemia (more than 10 g/dL) is typically acceptable in smoldering cases…

    Best

    Dan

  • Kevin Jones (author) said:

    Nancy,
    Thanks for the thoughts and wishes, and I will drive carefully (I just got a new set of snow tires on the Mini, which it needs in the winter here). I imagine the electrophoresis test probably takes too long and is too expensive for most blood donor centers. It seems like they could at least do some additional tests or screening though, such as red and white cell counts or platelet counts. That would probably raise a flag pretty quick since the MM tends to lower those. In my case, all were well below the normal range. Hope you are doing well and have a good holiday too.

    Larry,
    My best wishes to you and you’re family as you go through this and I hope the SCT is successful. I know dealing with insurance can be frustrating sometimes so hopefully there are no glitches there either.

    Sean,
    Reading your column and those of the others that share their stories through the Beacon is what inspired me to become a contributor. I’ll picture you pointing to South Lyon as I drive down US23 to my treatment next week.

    Julia,
    You are so correct when you point out that MM is not picky about who it attacks. Part of my writing this article and those to come is to share that side of the experience.

    Steve,
    You’re fortunate to have friends in the medical field that they were able to call in the favors that helped speed diagnosis. I’m very glad to hear that your response was so good and you have been in remission for 4 years now. These are the types of testimonials that encourage us all.

  • Kevin Jones (author) said:

    Julie,
    I have not connected with Phil personally, but I am familiar with him and have visited his website (and ordered some his MM wristbands before having my own made up). So glad to hear you are in remission, and hope you stay that way for a long time.

    Pat,
    I’ve been following the Beacon columns and forums for a while and posting occasionally. Now I’m hoping I can contribute and offer some nuggets or help others like you and the other columnists have for me. Keep up the good work.

    Dan,
    Not sure which measurement you’re referring to for the anemia, but all my counts (red and white cells, and platelets) were well below the normal range. Furthermore, my M-Protein was at 2.7. Given these results, I was not considered smoldering, but at stage I, so consequently headed into treatment.

  • Kathy Farr said:

    You and I are on the same road….diagnosed 12/10, eight rounds of chemo, RVD, had the stem cell collection, and take Rev for my maintenance. I also have IgA MM and am presently in CR. Look forward to your monthly article.

  • Nancy D said:

    Kevin: Welcome to the group! I thought your first article was great.

    In regard to Dan D.’s question regarding Smoldering or Phase I. Why does one Doc chose early treat, and another doctor chooses the watchful waiting method.

    I have been smoldering (two yrs. now) with watchful waiting. My Doc says it depends on several factors. Age, general health of the patient, patient’s seeming preference of treatment, etc.

    Since MM is considered “untreatable” (low remission rates w/ high reoccurance rates) by onocologists with “poor prognosis” (4-5 yr. average mean, with exceptions), our treatment choices are calculated risks weighed by doctor/patient team treatment preferences. There are risks and benefits to each method; and each patients overall health and situation are unique. The patient has to have a comfort level with his/her treatment plan.

    This is my second major go-around with cancer. In the first situation I was 20 yrs. younger (40yrs.)and raising teenages as a divorced single mom. Even invasive breast cancer like I had before, has a fair remission rate. I was willing to walk through the fires of hell for even a few extra years to see my teen kids through to adulthood.

    This time around I am 60 yrs. old with poor prognosis and a grown (adult kids)family and two grandsons. Chemo will buy me maybe 5 extra years; if it works… I choose to wait and see this time around.

  • Kent Bradley said:

    Thanks for choosing to write a column Kevin. The columns here have been extremely helpful and educational since I began “our” battle in March 2011 with SMM at 62. If nothing else, columns like this should get the word out to newly diagnosed patients that an SCT is NOT necessarily the first line of treatment. These MDs who give you a 3-year life expectancy (my original hematologist included) ought to be shot. We need to be treated by doctors who specialize in MM.

    I’ll add to that those MDs who perform Bone Marrow Biopsies under a local anesthesia on a conscious patient. Propofol is safe and appropriate, but probably robs revenue from an MD who does this in his/her office. My conscious BMB was painful for 2 months while my propofol BMB was painful only when removing the bandage. Conscious BMB is a barbaric practice, as was my conscious prostate biopsy.

    For me, avoiding chemo as long as possible is the objective, and I consider myself lucky to be asymptomatic and low risk. Best wishes for the success of your treatment.

  • suzierose said:

    Hi Kevin!

    Another fellow Wolverine here via the Motor City..they recently tore down my HS..CassTech!

    Thanks for sharing your story. I think the way MM insidiously creeps up on patients is the most devastating part of the disease. You are feeling just great, have no clue, and then BAM! In your case they say IGA is barrelling through your cells, in others we learn, the cytogenetics are bad. Yet, we are all newly diagnosed.

    Just a conundrum.

    Glad to hear that you didn’t elect to go to one of the ‘doc shops’ and headed instead to the U! Jakubowiak is an outstanding MM expert. Now, that he has headed to the U of Chicago, who will be your doctor at the U?. I had called about his study as I was interested in carfilzomib as well. I was bound and determined to avoid the PN of bortezomib. I ended up at NIH instead under the care of Ola Landgren, the man is brilliant and I feel like I am getting excellent care, as he is recognized as being in the top 3 MM experts in the world. In addition to being brilliant he has a huge compassionate heart and takes time to spend with his patients, very thorough and in-depth analysis on anything you inquire about…from soup to nuts..as they say, lol

    Carfilzomib makes me tired have you experienced that?

    I agree that we have to think victory and remain focused. I consider my cells my troops and the drugs are my drones attacks.

    Wishing you a Merry Christmas and Hail to the Victors Valiant!

  • cmolinaro said:

    Nice to come across a fellow MM’er in good shape, who is forced to battle head on with this disease. Like you, I had no side effects prior to being diagnosed. Went in for a routine yearly physical and bam!, it was discovered I had high calcium. I’m 33 now(was diagnosed at 31),have gone thru two auto SCT’s in the last year and half and am in a CR. Good luck in your endeavours!

  • Kevin J (author) said:

    Kathy,
    How has your response been so far? Sounds like you’re similar to me and you’re seeing how the initial therapy holds out before committing to a SCT. With the clinical trial I’m on, my maintenance is still the full CRD, just every other week instead of 3 out of 4, and I’ll be doing this through Jan 2013. Good luck.

    Nancy D,
    In my case, I was never considered smoldering – I didn’t even learn about that until later as I continued to research the disease more. I’m not sure it would have made much difference. Given my cell counts, the fact my IgA was continuing to rise, and the opportunity to get into the CRD study, I chose to go on the offensive. I also understand your choice to wait – my father is in a similar situation. I hope you continue to remain stable.

  • Kevin J (author) said:

    Kent,

    I also have found the columns here very helpful. This is the best site I’ve found for connecting with others traveling a similar, yet at the same time also different path as I am. Having such a rich variety of contributors provides access to information and experiences that I would probably never come across otherwise.

    I share your feelings on the BMB. They were some of the more painful experiences of my life (they had to progress through three different needles my first time due to how thick and strong my bones are). I didn’t learn I could do it under a general until recently while talking to another patient.

    Glad to hear you’re asymptomatic and hope you can remain that way for a long time.

  • Kevin J (author) said:

    suzierose,

    I also find it disturbing that MM can go undiagnosed so long. One of my infusion nurses told me it took over a year to diagnose her ex-husband.

    UofM is still searching for a replacement for Dr. Jakubowiak. In the mean time his patients have been spread over several of the other doctors. For now it’s not an issue with me since I’m in the routine of treatment. If something comes up, I have the option of switching down to Chicago with Dr. J. It’s about the same distance for me either way.

    I feel a bit tired 1-2 days after treatment, probably because the dex is wearing off, and some queasiness, but otherwise handle it well.

  • Kevin J (author) said:

    cmolinaro,
    Glad to hear that you’re in CR, thought it’s unfortunate what you’ve gone through to get there, and are going through it at 33. I do realize now that I was experiencing some effects before I was diagnosed, but attributed them to getting old. For example, I was pushing to average 15 mph on my mountain bike, tired quicker, and recovered slower. This past summer/fall, I’ve been biking 80-100 miles/week and averaging 17-18 mph, with much more energy.

  • clifford said:

    IgA doesn’t seem to be a ‘more aggressive’ form of MM just a more rare variety. I got diagnosed with igA over two years ago, smouldering my doc called it. Thalomid didn’t really do anything for me except make me really sleepy. I just started taking Velcade with excellent results.

  • Dan D said:

    Interesting discussion. It is not my place to question anyone’s personal choices. We are all in the same boat,and we do what we think is best. I am convinced, however, that multiple myeloma really does comprise different diseases, and treatment should recognize that. So personally I am having issues with my current oncologist — I have smoldering myeloma — who seems hell-bent on convincing me to take an aggressive course of therapy less I drop dead in 5 years. He also tells me that he has zero interest in prognostic indicators, such as cytogenetics (I am low risk) and free light chains (mine are normal) as he treats all patients essentially the same. And yet he is a highly regarded oncologist with expertise in multiple myeloma. I will not be sticking with him — as I simply do not trust his judgment, and I do not respect his disinterest in a scientific approach. (Disclaimer: I have a doctoral degree in molecular biology and 20 years of research experience, so I am biased in my thinking.) He also made the mistake of accusing me of reading too much on the internet and trying to be the doctor. Well I am the one with the grim sentence — not him, so I need to be my own advocate. I WILL take an aggressive course if my markers go in that direction. So what I am doing is establishing a baseline of my markers over an interval of six weeks — and go from there. My oncologist was willing to do that — although in his mind, it is a waste of time. I disagree entirely. I apologize for being bitchy. But I am truly concerned that too many patients take their doctor’s word as gospel. I should add that I did see a true MM expert for a second opinion — and he agreed with a “watch and see” approach — but he is more than 100 miles away and not a real long-term option. So the battle/journey continues….

  • terryl1 said:

    Hi Kevin, great article and I found a lot of parallels in our respective paths. I am a robust 49 year old guy who is on Lipitor. So, I have a six month CBC to check liver function, etc. My family doctor noticed my WBC was a little low this summer and sent me to a hematologist. The latter never suspected MM and even initially gave me an SPEP which was as normal as normal can be. Problem is I am light chain only ( about 15%) of us. Ultimately, a BMB unfortunately solved the riddle. My local hem/onc was not an MM expert so I went to the NIH, like Suzierose, and was fully evaluated by Dr. Landgren who, like Suzierose says, is amazing. The man is a saint. Anyone, including Dan, who may have SMM, should contact his office for an evaluation and possible admission to his study. They even reimburse for travel, etc. and there is no cost. I am concurrently monitored at UPenn by another great doctor but the level of care at the NIH is second to none. I currently am considered high risk SMM. I have no CRAB symptoms except my hemoglobin is lower than normal. If or when I need treatment, I will have a tough choice between UPenn a few minutes from my house and the NIH a few hours away. I look forward to your next column and for your putting into words what a lot of us think and feel.

  • Nancy D said:

    This has been one of the better group discussions.

    Kent- My doctor would not give me a prognosis for life expectency, even though I asked him for it. He muttered crap (excuse my language) about lifespan prognosis being detremental to the patient…if I tell them the have 5 yrs,, they’ll drop dead on year 5! If I tell them they have 10 yrs. they’ll make it to 10. I think that is silly – we are intelligent people. We have to make plans for the future. The plan can be just simply taking a long deferred vacation trip – a positive thing, while we are healthy enough to enjoy it before treatments. Putting the family photos in a scrap book and labeling them for younger family members that may not know who the names of all the older relatives.

    He did tell me my “conversion rate”, a medical jargon term for the same thing, but still would not give a projection or even the averages. I kept insisting. He said my conversion rate is 10-12% per year. The conversion rate is based on the “indicators” in the bloodwork analysis. He did explain the conversion rate is based on a ten year span; a 10% conversion rate means each year the mortality rate risk increases by 10%. Years: One – 10% mortality, Two – 20%, Three 30%, Five – 50%, Ten – 100%. People with a sucessful chemo or a bonemarrow transplant may exceed these projections… My research online seems to support my doctors information that he was willing to give me. Check for yourself – google Multiple Myeloma Prognosis. It also covers reading the diagnostic indicators…over my head, maybe Dan D. can enlighten us!

    All of us have the same MM disease – IGA, anemia, M-proteins, etc. are all components (diagnostic indicators) on our bloodwork tests for MM. These factors indicate the degree of aggression (not different diseases) -conversion rates and staging. Staging is the amount of invasion of the disease into the body – blood, bones, or other organs. Some Doc’s discuss it; some don’t.

    Kevin- My doctor offered me a clinical trial study at the University – it is a double blind study. Medicine or placebo, neither the treating doctor or patient know which you’ll receive for drug research purposes. I declined.

    Dan D. – Your Doc sounds like a real jerk with a very fragile ego. Doctors are people too with the same insecurities as the rest of us. I think he was intimidated by your education level and the field of expertise. He’s worried you’ll micromanage your treatment. A secure Doc would have encouraged your participation in your own treatment plan. My medical provider has an online software application. I can pull up all my tests online and they have a software the will chart my results for me; another application will graph it. I can see my IGA, M-proteins, and other blood components /indicators. He encouraged me to look at mine – so I would not be anxious during the watchful waiting phase. He also assured me that if I became uncomfortable with my treatment choice, we could change to the aggressive method at any time.

    BMB’s are barbaric! I told my Doc no more of those unless I go night-night during them!!! He said he agrees with me. He said he didn’t understand why the providers use a general for a colonoscopy with is less painful (but obviously embarassing for all concerned if awake), yet continue to keep doing BMB’s with a local that isn’t even very effective for deep tissue/bone pain.

  • Nancy S. said:

    Hi Everyone…as usual, am enjoying following along with the Beacon, the chats, the news and all! I just wanted to add a few points to the above discussion. You may take sedation (Medazaline) for a BMB..after the first one, with local anaesthetic, which was really painful, I opted for the sedation. During the last one I had, following my SCT, I actually slept through it…no problem. The medazaline was given by IV. I recently also had it for a colonoscopy…it seems to be a standard procedure for medical tests that are somewhat invasive. Was so relaxed that I could watch the monitor during the procedure.

    Also, at the time of my diagnoses 2 1/2 years ago, I had high light chain protein counts (IgG) and a LOT of bone damage, but did not have anemia, high calcium or other blood irregularities. Had been diagnosed with osteoporosis six months prior to my MM diagnosis. That certainly confused the issue for awhile. Of course i wish it had been diagnosed sooner, since who likes to have compressed vertebrae, and lesions all over your skeleton, but at least it was in time to catch it and beat it back. The induction chemo, SCT, and maintenance chemo all contributed to giving me my current position of a CR.

    My doctor told me that my prognosis would be for five years and beyond. That of course scared the heck out of me and I was very frightened for awhile, until I somehow came to terms with this whole kettle of fish. Right now I am hoping to stay in a CR, not have any more bone damage, and am also hoping that the new chemo drugs coming along will be there when we patients need them. Maybe they will have less of side effects too…neuropathy is no fun either and have suffered from that, but not as much as some people have. That is just because I have wasn’t on the drugs for as long as they were. Actually was getting neuropathy in my feet prior to my diagnosis, since my blood was not right…remember standing on risers during a choir performance for a couple of hours and having my feet go completely numb. This was a couple of months before Dx.

    Anyhow, luckily, we are also trained in science and medicine and can thus assess our treatments from our own perspectives. My BSc was in Microbiology (’74), and my husband has a PhD in Microbiology and is also a practicing MD. Why did I feel like I was right in the middle of a cell biology experiment all along?? Or, to put it another way, what rabbit hole did we fall through in order to reach this place? (Alice in Wonderland). We are part of the medical community here and do our best to understand and make our way through the maze of issues. Don’t know how it will turn out , but then it is not given to us to know these things.

    Hi Nancy D…we are the same age you know!

    Best wishes to all with MM problems and have a great Holiday Season … we are having a big turkey dinner here tonight and i have to get going and help my dear husband with this.

  • Kevin J (author) said:

    Clifford,
    I agree – from what I recall reading, IgA is less common then IgG, and IgG tends to have poorer prognosis. However, I tend to be cautious about these type of generalizations given all the factors that tend to affect prognosis, and all the new information that keeps coming out about it.

    Dan D,
    Given your situation, I would also be looking for a different doctor (which in a sense is similar to the decision I made with my first doctor since I didn’t feel he had the expertise to treat me effectively). I’ve never had any issue with Dr. Jakubowiak or the UofM staff. They encourage my questions, and generally seem pleased when I’ve done research and can discuss things with them intelligently.

    terryl1,
    You’re the first person I’ve come across that is light chain only. From what I’ve read, that can be fairly difficult to diagnose, so it appears you were fortunate they did so relatively quickly. I have to admit I was not familiar with NIH until suzierose mentioned it, but have since been to their site to learn more. It’s great that you’ve both had such great experience with it.

  • Kevin J (author) said:

    Nancy D,

    I tend to be “on the fence” regarding trying to put a timeframe on the prognosis. The engineer/mathematician side of me wants hard data to process, while the less anal side of me will read several articles, studies, etc. over the course of an evening and see timeframes ranging from a few months to many years depending on so many variables. I think this just confirms the need for more research to truly understand the disease, and the factors affecting it.

    I would also be hard pressed to consider a double blind study. Fortunately, everyone in the Phase II trial that I’m in receives the CRD, which was something we confirmed before entering it.

  • Kevin J (author) said:

    Nancy S,

    I think it’s safe to say we have consensus on BMBs – until finding out it could be done under a general, I actually (in a warped way of thinking) had been dreading reaching CR because I would have to go through another one.

    It’s great to hear you’ve reach CR. Are the skeletal issues still a problem, or have you been able to overcome those too?

  • Nancy S. said:

    Hi Kevin…thanks for your concern, and of course for starting up a column in the first place! My bones were slow to heal, and I still have pain, so having recently had my third annual x-ray skeletal survey, will be finding out next week as to the progress of the healing (or not). if I forget myself and lift anything heavy, like a piece of furniture, I get a lot of pain for several weeks, (probably more bone compression or small fractures). So I have to be uber careful about weights in general. Am still on a pamidronate drip though, and do lift really light weights at our gym, so it is not as bad as it was when I was diagnosed. I can even carry an 8 kg. turkey into the house from the car….so life is not so bad. just grateful for all the treatment and help I have had to date, and my reason for sharing all of this with you and your readers is just for your edification too. MM is quite a dangerous disease, actually….good to be cautious and seek treatment as soon as you need it!

  • Kathy Farr said:

    Finished eight rounds of RVD in June and found out I had a m spike of zero…then started Rev 15 mg 21 days on 7 off for my maintenance and have gotten a Zero every month since then. Also have zometa once a month when I have a doctor’s visit. I have my six month check up at Emory in Atlanta in January and will find out how we will proceed. Dr. Lonial was a speaker at the conference in CA, he is the specialist I see. Only side effects I have is being tired and some neuropathy. Thanks for all your information.

  • Dan D said:

    Thanks for the input. I have looked at the NIH MGUS/SMM study, and agree that it may be a good thing. And Dr. Langren appears to be scientfically and medically alligned with my own view. The NIH also appears to carry out a complete profile on their patients, including MRI surveys and Gene Expression profiling. Knowledge in power.

    Part of the reason I hope my SMM is stable is because I do believe that each year brings clearer resolution as to the best treatments for individual patients. And one area that I believe may offer long-term management is immunomodulatory vaccines — perhaps within a few years.

    As for my belief that MM comprises different diseaes, certainly this is true with respect to so-called low-risk and high-risk patients. But beyond that, I think it is comforting and informative to recognize that many MGUS patients live a full-life without treatment despite signigicant bone-marrow involvement and relatively high M-protein levels (~3 gm/dL). Clearly those cells are — and remain – in a pre-malignant state. If a vaccine or drug can keep us in such a state, then akin to diabetes management, I am fine with life-time disease maintenance.

    And there in nothing magical about the arbitrary cut-offs for MGUS. Experts such as Robert Kyle at the Mayo Clinic have long recognized stable populations of smoldering patients with high M-protein levels and substantial bone-marrow involvement.

    I also am planning on beginning Zometa infusions regardless of any other treatments. Even though my bone survey and calcium levels were normal, the benefits of taking this treatment as a prophylactic probably outweight the risks. At least I think so today!

  • Dan D said:

    Also, regarding BMBs:

    Here is where my oncologist is very good. It really only comprised about 5 second of tolerable pain — with a local. And that is how it should be.

    Now to the cynical, I was thinking about what my oncologist actually does with his hands: and as far as I can tell, it is only BMBs. The nurses do all the infusions, schedule treatments; the technicians so all the surveys and diagnostics, and he ignores all the data — he didn’t even know my Hb numbers (~ 12.3) when I last met him — LOL. So oncologists actually have the morbid pleasure of being able to prescribe drugs without having to physically treat patients – a good deal. Stem cell transplant specialists are a different category…. My GP also does a lot more hands-on work.

  • Nancy D said:

    Dan D.- My Doc farms the BMB’s out to the surgical residents…they don’t call our Docs specialists for nothin’!

    Kevin- I think your column has generated more meaningful discussion than I have seen on this site since I found it. Everyone has respectfully shared viewpoints and information with each other. And this is just your first column!!! It is nice to have the “don’t worry, be happy platitudes” like that 1980′s song goes at times. But I think we are searching for meaningful information from someone who lived it. Many of you are on the active retreatment phase which is down the road for me, but this is also important because it will help me to be better informed when I have to start making more agressive treatment decisions.

  • terryl1 said:

    Hi Dan D, glad you checked out the NIH and Dr. Landgren. He’s the type of physician/researcher who who will help us find a cure for this $&*^(@ condition. I hope you contact them. You need to get a new doctor. Your present doctor sounds unfocused and I wouldn’t want him working on an ankle sprain. As I indicated, I am also concurrently monitored at UPenn locally which has an amazing gene therapy research/production facility. They had international success this summer in three CLL cases where two of the patients were effectively cured after being reinfused with their own souped up killer T cells. The doctor involved, Carl June, is now involved with a similar approach to myeloma. Those trials are already underway at UPenn and University of Maryland. MM patients are being reinfused with their own genetically altered cells after SCT’s. Hopefully, soon we will learn if this approach works.

  • Dan D said:

    terryl1:

    Thanks for your input. My present doctor certainly is overbooked — to ensure an economically viable practice — which certainly does makes him unfocused regarding individual patients: no time to read charts in advance. I also suspect that he is used to seeing elderly patients who are clearly in a symptomatic stage of MM. I am undoubtedly an anomaly — or at least on the edge– that does not fit neatly into his treatment scheme.

    I am switching doctors — thanks. In that regard, one factor I have been considering — should I require treatment — is how flexible are the hours of the infusion center. The current oncolgist conveniently — for him and his staff — has hours only from about 10 to 5, on weekdays. Another strike against his so-called “compassionate” group practice. Not exactly considerate of patients who want to at least try to work. I have noticed that other places, especially those directly associated with university hospitals, have weekend and extended hours — much more considerate. A small logistical factor — but everything mattters.

    The gene therapy approach with infused NK cells is exactly what I like to hear about! That sounds great – as it uses the body’s natural and sophisticated defense mechanisms to attack the disease. I look forward to monitoring such research.

  • terryl1 said:

    Hi Dan D, I suggest you call the International Myeloma Foundations’s hotline to speak to one of their excellent nurses. They can refer you to an actual myeloma expert in your area. The website, like this one, is excellent as is the one for the MMRF. My original hematologist was not an expert and happily referred me to UPenn which is cutting edge. I found Dr. Landgren on my own through sites like the Beacon. Good luck. I hope you find a new doctor soon, a true myeloma expert, not a general onc.

  • Kevin J (author) said:

    Dan D.

    When I initially started my treatment, I was in the general infusion center at UofM, and their hours were fairly flexible. However, I was subsequently moved to a separate area for handling infusions for the clinical trials where the staff has additional training to deal with the protocols required by the studies – no evening or weekend hours in this area. So, depending on whether you’re in a study could also affect how flexible the hours are too.

    By the way, I am also very excited about the reserach being done in gene therapy. Dana-Farber has also been doing some research in this area.

  • Dan D said:

    Thank you Kevin. I was reading — in response to your commments about Dana Farber — related research being carried out by Ken Anderson at Dana Farber and an associated company, OncoPep. They are are working on a MM vaccine with a combination of peptides, and initial trials may commence in 2012. I wish you all the best in your treatment moving ahead.

    DD

    BTW: I received my graduate degree from U of M – Ann Arbor, and grew to love that town and the state of Michigan — except the long, gray winters!

  • Myeloma Beacon Staff said:

    Hi Dan D,

    In case you haven’t already come across them, The Beacon published a series of articles about work toward a vaccine for multiple myeloma. You can see all the articles at this page:

    http://www.myelomabeacon.com/tag/resources-on-myeloma-vaccines/

    Best of luck,

    The Beacon Team

  • Forrest said:

    Kevin, Thanks for your column and sharing………..
    After a few years of all this and growing tired of all the cancer ‘groupies’ let’s have a second look at the docs and treatment.
    Good luck to you and stay positive!

  • Dan D said:

    Not sure about Cancer groupies — this is one rock band I would prefer not to join! But I am VERY much in favor of having a second look at the docs and treatment. For example, what if I feel that my immune system can handle some cancer burden – especially if it not truly malignant: Is there some recourse other than the Velcade-Revlimid-Dexamethasone regimen followed by SCT?

  • Mark said:

    Dan D.

    Hope you are doing well. The fact that we have Myeloma shows that our Immune system has not identified it as a threat to our well being. There is even some research that suggests your healthy cells try and protect the myeloma and help it grow.

    http://www.sciencedaily.com/releases/2009/10/091005123043.htm

    I am certainly no Doctor, but I would recommend you check out this page at Pat Killingsworth’s great blog. Here are the statistics with regard to how poor a patient’s survival is if they are resistent to Velcade/Revlimid. I would ask your doctor what his/her long term strategy is since he/she may be making you resistant to Revlimid/Velcade so early in your treatment course.

    http://multiplemyelomablog.com/2011/12/data-presented-at-the-imf%e2%80%99s-journalist-workshop-takes-me-on-an-emotional-roller-coaster-ride-part-two.html

    Mark

  • Dan D said:

    I would only add — again — that MGUG patients can be stable, meaning that their immune systems ARE able to control “myeloma” progression and malignancy. I am not saying that is necessarily my situation — only pointing out the continuum.

    By the way, I have not begun any therapy yet — not even Zometa. And am not yet sure I need to — which is why I am asking these questions upfront. I appreciate your input and have checked out the useful links.