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Saturday, December 31, 2011

Happy New Year!

Yesterday, I had an appointment with Dr. Treister, my consulting dentist at Brigham and Women's Hospital.  He gave me clearance to go ahead with the bisphosphonate, Zometa, after my recent dental woes.  Everything has healed fine, so there is no reason to delay any longer.  I will let my medical team know so they can at last send in the "Coast Guard" in the fight against MM.

Dr. Treister also convinced me to go ahead with getting a proper (i.e., expensive) crown and bridge for my upper teeth, rather than continue with the interim temporary solution.  The reason for this is that the temporary bridge doesn't seal the edges properly, making tooth decay more likely.  If I am taking Zometa, the last thing I would need is more dental problems (in case you've forgotten, check out my Sept. 19 post on ONJ).

Reflecting on this past year, I have to admit it kind of sucked.  Getting diagnosed with an incurable cancer is a bit of a downer.  On the other hand, I can't really complain too much.  I'm feeling good, my treatment is working beyond expectations, I have the best medical team in the known universe, and I am surrounded by loving and supportive family and friends.  What's so bad about that?  I go into 2012 with a lot of uncertainty, but then doesn't everyone?

So I'm planning to pop a bottle of champagne tonight to celebrate the New Year with the hope of good things to come.  Happy New Year to you all, and please stay healthy!

Thursday, December 29, 2011

Cycly 6 Day 1

Dr. Paba Prada and me
Yesterday was a very good day at DFCI.  For starters, I had been planning for an annual golfing trip in February, but I found out a couple of weeks ago that they had scheduled me for a stem cell collection appointment during that week.  I was pretty bummed, but I emailed Cathy Colson last week to see if the appointment could be rescheduled.  She forward the email to my new transplant nurse, Muriel, who then spoke to Dr. Richardson.  Bottom line:  they have moved my whole schedule around to accommodate the golfing trip.  They all felt it was important for me to have my vacation.  Wow, what a great team this is!  I am psyched!

Brian and Gretchen both came in for the team meeting yesterday.  As you might expect, I had several questions and issues to discuss with Dr. Richardson.  Our meeting went better than I could have expected.  He fully answered all my questions and gave me some additional insights that have really helped my decision process.

One issue that was really bothering me was a view graph that Dr. Anderson presentated at the recent patient symposium. It had the comment that Revlimid doesn't work well as maintenance therapy for patients with my t(4;14) abnormality.  Since the ASCT clinical trial I am deciding on involves Revlimid as a maintenance therapy, I was obviously concerned.  It didn't make sense to me, as Richardson had previously told me that Rev was good for t(4;14).  When I showed him the offending statement, he was visibly taken back.  As good a friend, mentor, and colleague as Dr. Anderson is to him, he had to admit that this is just a mistake.  He probably meant to say thalidomide, not Revlimid. Whew, that's a relief.  I think he plans to have that corrected, as Celgene would not be too pleased to hear about that.

So, since Revlimid is so good for maintenance, could I get it without volunteering for the ASCT trial?  The answer is yes, but it will be provided free as part of the trial.  Under other circumstances, I would have to pay for it.  So that becomes a financial rather than a medical consideration.

We also discussed the issue of continuing the current protocol until I achieve maximum response, rather than rushing into the ASCT clinical trial at the earliest opportunity.  He agreed with that, although he also confirmed the conclusions presented in the MLN9708 trial paper at ASH that all patients so far achieved maximum response after 4 cycles.  This has tempered my expectations that my Cycle 5 results will show that I have moved from nCR to CR.  I will get those results next week.

Because of the schedule change to accommodate my vacation, they have decided to keep me on the MLN trial for an another month and collect my stem cells after Cycle 7 rather than Cycle 6, which will push it to near the end of March.  Assuming I elect to go with the new ASCT trial, I would probably elect to do the transplant immediately, given the likely event that my MLN protocol will have maxed out by then.

I then asked Richardson about the tradeoff between doing early ASCT vs. waiting until first relapse after front-line treatment with the new effective drug protocols.  He said that recent research is favoring the early transplant option and mentioned the results of a poster session presented at the recent ASH meeting.  I somehow missed this in my so-called "extensive research" of the meeting, mainly because I didn't focus on the poster sessions.  However, this is extremely relevant.  Here is a link to the abstract (No. 3069):

In this session, Dr. Antonio Palumbo presented final data from a phase 3 study on the Progression Free Survival (PFS) of melphalan, prednisone, and Revlimid (MPR) versus high-dose melphalan (MEL200) and autologous stem cell transplant in newly diagnosed MM patients.  Here is the conclusion:

PFS was significantly prolonged in the MEL200 group compared to MPR. This benefit was maintained in the subgroup of patients with standard- or high-risk cytogenetic features...This is the first report showing a PFS advantage for ASCT in comparison  with conventional therapies including novel agents.

Note that this study also addresses my high-risk cytogenic situation, and it seems to definitely tilt the scales in favor of the early transplant option.  As of now, this seems to be the best path for me to follow.

By the end of our meeting, Dr. Richardson and I were definitely on the same page.  I feel that I am fully onboard with the treatment options and the various important factors that have to be considered.   He expressed his appreciation for my taking an active interest in my treatment and feels that we have become a good doctor-patient team, which he much prefers to a patient who just asks him what to do.  I continue to be tremendously impressed with Dr. Richardson, and I know how lucky I am to have him as my doctor.  I still have a couple of months before I have to decide on participating in the ASCT clinical trial, but I am clearly leaning in that direction.

Tuesday, December 27, 2011

Decisions, Decisions...

Tomorrow we meet with Dr. Richardson and the rest of my medical team.  The question about my participating in the ASCT clinical trial (BMT CTN 0702) will be front and center.  I have been allowing this issue to fester in the back of my mind for the past several weeks rather than trying to analyze the shit out of it.  Now it's time to, well, start analyzing the shit out of it.

I'm starting with a few assumptions:
  • I should continue with the current MLN9708 protocol as long as I continue to improve each cycle, delaying any transplant until I reach a maximum response (hopefully CR or sCR).
  • I will still be eligible to participate in the ASCT clinical trial after such a delay.
  • Insurance will cover the expenses of collecting my stem cells even if I don't use them immediately.
Aside from the MM, I am in good health right now, in that my liver, kidneys, heart, and lungs are all functioning within or close to their normal ranges.  This is an important consideration for doing a stem cell transplant.  If I delay ASCT until my first relapse (hopefully several years downstream), I will be in my seventies, and who knows what my health level will be then?  As one ages, renal function declines, and frailty, weight loss, and decreased ability to tolerate toxicity become factors.

Normally, enough stem cells are collected to perform two transplants.  If I elect to have a transplant in the near future, I still may be eligible for a second ASCT downstream.  However, if I delay the first one until after relapse, I will likely only be eligible for a single transplant due to age and/or health considerations.  This could take one of my options off the table.  It may be advantageous to have both novel drug regimens and two transplants available to me as therapy choices.

While there is a lot of research underway now to examine the efficacy of delaying ASCT until first relapse, not enough data is available yet to validate this approach.  As I mentioned in a previous post, there are some doctors who feel that until more new and effective drug therapies become available 5 or 10 years from now, the current approach of doing ASCT early is still the best therapy option.

This exercise is to get my thoughts together a bit before meeting with Richardson tomorrow.  In the end, I will most likely follow the course he recommends.  However, I want to be comfortable enough with the various options to have a complete buy in to the path selected.

I am not looking forward to undergoing this ASCT procedure any time soon.  It almost seems contradictory for me to be feeling really good and then make a decision to undergo a risky procedure that will make me feel really bad for a while.  However, at this point I'm thinking that I probably should do this.

Sunday, December 25, 2011


It's Christmas day.  I don't have any medical insights to add to my blog tonight.  I just want to share with you all how wonderful it is to have my family around me now and for the next few days.  And I want to thank you all for your caring and concern for me.  You have boosted my spirits during this time of trial.

A life-threatening disease helps one to focus on the  important things in life.  Of those, family and friends are at the top of the list.  As one gets older, there are fewer mountains left to climb and windmills left to tilt at.  One is left with the hopefully golden memories of the days of yore, as most of mine are, and with the connections and loved ones of the present.  That means you. 

I am feeling healthy, happy, hopeful, content, optimistic, and only slightly anxious for the future, whatever that may bring.  Thank you for being there for me.  It means the world to me.  Have a very Merry Christmas!

Monday, December 19, 2011

DFCI Patient Symposium

Gretchen and I attended the DFCI Patient Symposium on Saturday.  While it was interesting, I didn't find it quite as informative as the first one we attended in September.  Undoubtedly, this is partly due to my having learned a lot since then, as well as my having closely tracked the results of the recent ASH Meeting in San Diego.  Still, it was a worthwhile event.  Anderson and Richardson make a great team, and both of their presentations were excellent.  Dr. Noopur Raje of Mass. General also gave a good presentation on targeting bone disease. The main focus of the symposium was on some of the new drugs being developed.  However, there wasn't much discussion on stem cell transplants, a topic of some current interest to me.

Now that the ASH Meeting is over, I can try to distill what I think of the current state of research in MM.  While there are many exciting drugs under development and lots of clinical trials assessing various treatment options, the fact remains that many of these drugs are years away from coming online.  From a patient's perspective, this is a little frustrating.  The last major MM drug to be approved by the FDA was Revlimid in 2007.  Only two others (carfilzomib and pomalidomide) are likely to be approved over the next couple of years.  In the meantime, one can get access to these new drugs by participating in clinical trials.  Fortunately for me, I am hoping not to need some of these new drugs in the short term, since my therapy is working quite well so far.

As for the transplant question, the jury is still out on the timing.  With the success of the novel-agent drug therapies, trials are underway to determine whether ASCT should be performed early, as is now standard practice, or whether it makes sense to delay until first relapse.  There seems to be consensus on a few points:
  • Be as aggressive as possible in trying to contain the disease up front.  Don't hold anything back in reserve for the next relapse
  • ASCT is most effective either up front or after first relapse.  After that, its effectiveness diminishes
  • Achieving VGPR or CR before undergoing ASCT leads to much greater median  Progression Free Survival (PFS) and Overall Survival (OS) and is a relevant objective for MM treatment
Yesterday, Pat Killingsworth reported in his blog about the IMF journalist workshop he attended while at the ASH meeting:

I found the last part of his blog regarding comments from Dr. Orlowski at that session to be memorable:

"Answering the oft asked question about whether new novel therapies will someday replace auto stem cell transplants, Dr. Orlowski responded with a qualified “yes.”  Dr. Orlowski clearly believes SCTs will become a less important part of myeloma therapy someday.
“And when would that be?” a reporter asked.  “Not until a number of these newer drugs become available in five or ten years.”  he answered."

OK then.  This is somewhat relevant to the decision I must shortly make.  While there is reason to believe that with the successful novel-agent therapy I am now getting, I could decide to defer ASCT until my first relapse, there is still not enough data to validate that it would be the best approach.  Decisions, decisions...

You may have noticed the time tag on this blog.  Yes, it's 4:30 am!  Don't ask me what I'm doing up at this hour.  I have no idea myself.  I can't blame it on the dexamethasone, since I haven't had that since Tuesday.  I just woke up a while ago and decided to get up.  My schedule has been a bit odd lately.  I may go back to bed soon.  Then again, I may not.

Wednesday, December 14, 2011

ASH Meeting Updates

The American Society of Hematology Annual Meeting just concluded in San Diego.  I have been getting dribs and drabs of updates on the oral papers and poster sessions from Pat Killingsworth and the Myeloma Beacon (see Helpful Links).   The paper I was most interested in, of course, was the update on the MLN9708 clinical trial that I am participating in.  Here is an excerpt from Millenium's press release about the results:

– 100 percent of 15 evaluable patients achieved a partial response or better, including four complete responses, five very good partial responses and six partial responses — 14 of 15 achieved partial response or better after cycle 1, 100 percent achieved partial response or better by cycle 2

– No patient has progressed to date

Although it is very early to reach conclusions, these are excellent results, comparable to those achieved by Velcade combination therapy, which is the current standard.  The Myeloma Beacon also reported on this paper presented on Monday, but gave some slightly different numbers (based on only 10 patients):

This article reports that participants in this MLN9708 trial have the option to undergo stem cell transplant after 6 cycles, which is consistent with my current schedule to have stem cells collected after Cycle 6.  Another interesting comment in this article is that all patients in this trial have achieved best response by the 4th cycle.  This is a little disappointing, as I was hoping to achieve CR during the current Cycle 5 (I have been in nCR since Cycle 3 because of my positive immunofixation test).  It appears that this is not likely, based on the trial results to date.  Oh well.  I can still hope.

On Saturday, Gretchen and I will be attending the Patient Symposium at DFCI.  We will get updates of the many exciting results presented at the ASH Meeting.  I'll be paying particular attention to hear their take on timing of stem cell transplants.  In addition to MLN9708, excellent results were reported for carfilzomib, pomalidomide, elotuzumab, bendamustine, and other hard-to-pronounce drugs.  Who comes up with these names?  They don't exactly roll off the tongue.

Today I received a letter from DFCI announcing all the members of my transplant team.  I guess things are quickly moving in that direction without any inputs from me.  Gulp!  I'd better get cracking on doing my research on which path to take going forward.

Yesterday was my DFCI infusion day.  I also attended the writing workshop at noon.  The workshop is very interesting, both because of the people participating and for the subject matter.  Our assignment for yesterday was to "write small" about some object that we use (tool, etc.).  The objective was to concentrate on the small details of the object, ideally getting at bigger ideas through something precise.  Believe it or not, I actually wrote a Shakespearian sonnet about my Craftsman power lawn mower.  I'll let you chew on that for a while.

Thursday, December 8, 2011

To Transplant or Not To Transplant?

I have been giving some thought to the question of whether I should volunteer for the clinical trial that Dr. Richardson recommends to perform an ASCT in the next few months followed by Revlimid consolidation/maintenance, or to continue with the current MLN9708 clinical trial indefinitely.  Based on the limited amount of research I have done to date, I can make a case for either option.  So, here is a debate I am having with myself over the efficacy of these two approaches.

Case for entering the ASCT clinical trial at this time:

Opting to enter the ASCT clinical trial is the only option that makes sense. To do anything else would be really stupid, and here's why. Standard therapy for patients under the age of 70 is to do initial induction therapy followed by ASCT. Studies have shown that patients who received ASCT early have better Overall Survival (OS) than those who received ASCT after relapse (Ref. 1). The most important predictor for a good outcome is to be in Complete Response (CR) at the time of ASCT, resulting in Progression Free Survival (PFS) of 47 months and OS of 91 months (Ref. 2). I am already nearly at CR. If I wait until relapse to do the ASCT, I may not be in as favorable disease status as I am now, and ASCT may not work as well. Furthermore, recent trials have shown that Revlimid is an excellent maintenance therapy after ASCT, trumping even tandem transplants (Ref. 3). Since Revlimid is not FDA approved for this purpose, the only way to get the benefits of Revlimid maintenance is to be a part of this trial. Since I am close to 70 now, my age is another reason to opt for an early transplant.

Case for continuing MLN9708 trial and postpone ASCT until relapse:

Opting to continue with the MLN9708 clinical trial and postpone ASCT until first relapse is the only option that makes sense. To do anything else would be really stupid, and here's why. This MLN9708/Rev/dex trial is doing extremely well, with 100% Overall Response Rate (ORR) to date (Ref. 4), which indicates it may even be a better induction therapy than Velcade/Rev/dex, which is the current gold standard. The fact that I am almost in CR already augers well for a long-term benefit. The planned maintenance therapy is to continue with MLN9708. While this is unproven, Velcade has been shown to be a excellent maintenance therapy drug, and MLN9708, which is similar but more powerful, may work even better. If not, Velcade is always available. Many patients opt for early ASCT for quality-of-life reasons due to peripheral neuropathy (PN) associated with Velcade. I have no such issues, with minimal side effects from my treatment. In fact, ASCT is a serious invasive procedure, requiring weeks of hospitalization and months of restricted activity. Furthermore, there is a 4-5% mortality risk from the procedure itself. Recent research has also shown that with the new induction therapies, delaying ASCT until first relapse won't affect OS (Ref. 5). What about the risk of waiting until after age 70 for ASCT? Not so much. Recent tests (Ref. 1) have shown that patients over 70 without co-morbidities (heart, lung, kidney, liver problems) respond as well to ASCT as younger patients, even with lower levels of the chemotherapy melphalin (140 mg vs. 200 mg) that Richardson said he would use for me. Other than the MM, I'm as healthy as the proverbial horse, so keeping ASCT in reserve until first relapse makes sense. 

OK, readers, what do you think?  Did I make the better argument, or did I?  I welcome your comments.  Not that I plan to make my decision on the basis of a straw poll, mind you.  The only votes that count are mine, Gretchen's, and Dr. Richardson's, not necessarily in that order.  However, I'd like to be knowledgeable enough to be really comfortable with whatever the final decision is.  I plan to continue reading and learning so as to either further confirm or refute some of the arguments above.

Monday, December 5, 2011

Cycle 4 Results

 I've been waiting anxiously all week to find out how the test results came out after finishing Cycle 4 of the MLN9708 protocol.  I got some preliminary results on Saturday from the online Patient Gateway which looked very promising.  I called Kathy Colson today to get the electrophoresis report, which quantifies the M Spike, and the immunofixation report, which detects any trace monoclonal gammopathy.

I was a bit disappointed to find that the report was the same as last month, i.e., no M Spike could be "quantitated" on the electrophoresis, but immunofixation showed that there is still a faint M Spike.  This means that I must still be classified as VGPR rather than CR.  Complete Response requires that the immunofixation test be negative.  Drat!  However, I am still quite happy with the results, because almost all the numbers showed significant improvement over last month.  Here is an update to my test results going back to the start of the clinical trial:
Test Name Reference Range 8/1 8/30 9/27 10/25 11/29

Gamma M Spike 0 g/dL 1.96 0.41 0.13 0 0
IgA 70-400 mg/dL 3180 659 148 80 88
IgG 700-1600 mg/dL 246 248 292 249 312
IgM 40-230 mg/dL <5 9 15 28 24
Kappa/Lambda 0.26-1.65 578 26.7 4.5 3.4 0.7
24hr urine total protein <102 mg/24 hr 392 60 38 47 20
Albumin 3.7-5.3 g/dL 3.5 3.8 3.7 3.8 4
Beta2-microglobulin <2.7 mg/L 3.3 1.9 1.8 2.4 1.7
Red Blood Cell Count 4.2-5.6 M/mcL 3.4 3.7 3.9 3.8 4.1
Hemoglobin 13.2-16.7 g/dL 11 11.3 11.7 11.5 12.2

The most dramatic change is the Kappa/Lambda ratio, which is now in the normal range!   That's a 99.9% drop since August.  This means there are far fewer of those nasty free monoclonal Kappa light chains floating around in there, which has to be good news.  I was also pleased to note that the urine protein levels continue to drop, and both albumin and beta-2 microglobulin are going in the right direction.  My anemia numbers (RBC, Hgb) have also moderated to the best levels since I started, and I notice that I am not feeling as tired as I was.  Despite the existence of trace amounts of M protein, it is clear that I am continuing to respond well to the treatment.  (I'm taking time out here for a couple of Hurrays and Yippees and to jump up and down with my new-found energy.)

Everything I have learned so far about MM treatment indicates that one of the best prognoses for long-term survival is to achieve good response to the initial induction therapy.  For those undergoing stem cell transplant, achieving CR either before or shortly after ASCT offers the best chance for long-term remission.  At the rate I am going, I would hope to achieve CR over the next couple of cycles and continue to deepen the response to the therapy. I would be much more inclined to volunteer for the ASCT clinical trial that Richardson is recommending if I achieve CR in the meantime.  However, I won't feel like rushing into it as long as the MLN9708 continues to work its magic.  I'm not sure how to balance these considerations, but I have time to figure it out.  In the end, I suppose I will do what Dr. Richardson recommends, but we'll see.

Today, Kathy told me that Dr. Richardson has decided not to collect my stem cells until after Cycle 6 of the protocol.  That means it won't happen before late January or February.  That's fine with me.  It gives more time for the current protocol to continue to beat down the MM before collection, and it also gives me more time to decide about whether to enlist in the new ASCT clinical trial.  The only down side to waiting on stem cell collection is that Revlimid reduces the stem cell count, which can make it harder to collect sufficient stem cells if we wait too long.  But Dr. Richardson knows what he's doing, so I'm not worried about this.

Wednesday, November 30, 2011

More on Autologous Stem Cell Transplant (ASCT)

I know I just posted yesterday, but I'm adding this today for three reasons:
  1. I need one more post in November to match the totals for August, September, and October (8);
  2. My dexamethasone from last night is starting to kick in, so I'm awake; and
  3. I actually have a couple of things to say.
Yesterday morning, I saw from Pat Killingsworth's blog (see "Helpful Links") that he was on his way to Boston to participate in a panel discussion media event at Millenium Phamaceuticals (maker of Velcade and MLN9708).  I emailed him as to whether he would be interested in attending the DFCI Dec. 17 patient symposium as a reporter.  He responded that he would be, so I brought it up with Dr. Richardson, who said fine, although the proceedings will be on DVD, which could save him a trip.  I have since put Pat in touch with the media rep for the symposium for more information.

Pat called me last night, and we had a nice, long, delightful conversation.  He plans to talk with Dr. Richardson about the patient symposium at the ASH meeting in San Diego the week beforehand.  Since the symposium may be web cast, he may choose to stay home in Florida.  That would be a lot of travel in a short time, especially when you don't feel good.

We also spent some time discussing my new options regarding ASCT.  As you may remember, he just had a transplant in July, which didn't take, and he is now on an RVD regimen to bring the MM back under control.  It was from reading some of his blog posts and his references to several articles that has made me somewhat leery of rushing into a transplant too quickly.  I expected Pat to be cautionary about this, but to my surprise, he wasn't at all.  As he pointed out, each individual situation is different, and the specter of my turning 70 in just over a year is definitely a factor to consider.  And, as he didn't have to remind me, Dr. Richardson is a top expert in the field.

I told him that I plan to do a lot of reading and soul searching on the issue over the next month or so.  He said he would like to use me as a case study on how patients reach decisions on important therapy options such as this.  It won't be easy, especially considering the rapidly evolving, incomplete, and sometimes contradictory information and advice that is out there on MM treatment options.  I could always go for a second opinion, but who would I go to, God?  I told Pat I would keep him informed of my decision-making process.

I started doing a little research today.  As you may remember from my Nov. 16 post, I did a lot of research on the abstracts being presented at the ASH  Meeting in the category "Myeloma - Therapy Excluding Transplantation".  Hmmm, well guess what?  Now I'm suddenly more interested in papers including transplantation.  There aren't as many of those, so I don't plan to create another spreadsheet (sighs of relief from the Peanut Gallery).  Unfortunately, I didn't see an abstract for this particular clinical trial at ASH.  However I did find a website devoted to this trial:

There is a link on that site to Frequently Asked Questions and a video, both of which I found quite informative.

In yesterday's post, I mentioned that Dr. Richardson was not such a big fan of the tandem ASCT option in the clinical trial he is proposing.  I came across a great YouTube video of him today discussing post-transplant treatment options.  It's fascinating and directly relates to this trial:

He explains how lenalidomide (Revlimid) has emerged as a preferred post ASCT maintenance option, even trumping tandem (dual auto) and auto followed by mini-allo transplants in its effectiveness in extending both Progression-Free Survival (PFS) and Overall Survival (OS).  He makes a rather strong argument for me to seriously consider taking part in this clinical trial.

As of now, I have an open mind on this.  I am already weighing pros and cons, based on what little I know now, but I am definitely open to opting for this clinical trial, pending further research and getting the right answers to a number of questions.  Stay tuned...

Tuesday, November 29, 2011

Cycle 5 Day 1

Today was a long day at DFCI.  We got there about 10:30 this morning and didn't leave until after 3:00.  I started off by providing the requisite 13 or 14 vials of blood (but who's counting?), along with my 24-hour urine sample, discreetly disguised in a brown paper bag.  All the patients in the waiting room have been coming there long enough that I'm sure the bag fooled nobody.  So what!  We're all in this together.

Next, I went to the pharmacy to renew my Revlimid prescription.  I was ready to shell out big bucks this time, as I was pretty sure my stipend from Good Days at the Chronic Disease Fund must surely have run out by now.  To my surprise and delight, however, I was informed that my co-payment would again be only $20!  Wow, this is starting out as a good day.  I'm not sure how and why this is all working out so well, but I hesitate to look into it too deeply.

Next was my monthly EKG, which again was normal.  Then we met with Kathy Colson and Dr. Claudia Paba-Prada.  My blood test numbers for today had recovered nicely from last week.  The anemia numbers (RBC and Hgb) that I fretted about in my last post were significantly better.  They told me not to put too much emphasis on the Day 22 results, since they represent 3 weeks of continuous therapy.  That's why I get to recover for a week before starting the next cycle.  I have to learn to chill out on these numbers a little more.  The bottom line is that I'm doing great!  Kathy and Claudia were both very pleased with how well I'm doing on this protocol so far.  They both believe that I have achieved a Complete Response (CR) by now.  We'll get a better idea when the Cycle 4 protein test results come back next week.

I asked about the timing for my stem cell collection, and they indicated that it won't happen until January at the earliest. When that happens, I will go off the MLN protocol for at least a month before resuming it again.  I also asked about the timing for starting on the bisphosphonate (Zometa).  I suggested that I go back to Dr. Treister, the dentist at Brigham and Women's, for his opinion, and they agreed that would be good to do.

To absolutely nobody's surprise, Dr. Richardson was running about 2 hours behind today.  We had time to munch on not-so-bad sandwiches from the cafeteria while we waited.  I was in the Infusion Center, about to get my MLN and Rev, when he finally arrived.  He too was very pleased with my progress and noted that I am looking much healthier now than when we first met in July.  In fact, he said he was worried about me then, as I didn't look so good.  So everything is still going really well.

But then is when he threw a curve ball.  I had thought that we were on the same page regarding ASCT (autologous stem cell transplant), in that they would collect my stem cells and then wait as long as the MLN protocol and followup maintenance was working well before considering a transplant.  That is where things stood a couple of months ago.  However, Dr. Richardson is now recommending that I go for an earlier ASCT.  Part of the reasoning here is that it won't be long before I reach the magic age of 70, when the efficacy of ASCT starts to diminish.

Just as he did at our first meeting, Dr. Richardson came in today with a recommendation that I participate in a clinical trial, this one involving ASCT.  This Phase 3 clinical trial has three arms, randomly chosen among the participants:
  • Arm A:  ASCT with a tandem (second) ASCT, followed by a 3-year Revlimid maintenance therapy
  • Arm B:  ASCT followed directly by a 3-year Revlimid maintenance therapy
  • Arm C:  ASCT followed by consolidation therapy of Revlimid/Velcade/dexamethasone for 4 21-day cycles, followed by a 3-year Revlimid maintenance therapy
Richardson is not a big fan of the tandem ASCT, so he suggested that I could withdraw from the clinical trial if I got assigned to that arm.

I now have a lot to think about over the next couple of months.  On one hand, if my current protocol is working so well and I achieve CR or sCR, why not keep doing it and then go on MLN9708 maintenance therapy after the end of the trial and wait for a relapse?  In other words, if it ain't broke, why fix it?

On the other hand, I have enormous respect for Dr. Richardson.  He pointed out that time is not on my side as far as waiting a long time before choosing ASCT as a possible option.  While they can still do ASCT after age 70, they cut back on the amount of medication used for these older patients, which might not give as good results as with younger patients.  Furthermore, if the initial induction therapy is working well, resulting in CR or sCR, this is the best circumstance for performing ASCT, usually resulting in longer times before relapse.

I think I will  go take my 40 mg of dexamethasone before I go to bed tonight and ponder this issue some more.  Don't get me wrong...I am very happy about my visit to DFCI today.  Everything continues to look good, for which I continue to be very grateful. 

Tuesday, November 22, 2011

Cycle 4, Day 22

In my November 13 post, I mentioned the plethora of new drugs being developed for relapsed and refractory multiple myeloma (RRMM).  MM is a very clever and insidious disease.  Even after a successful front-line treatment, MM invariably returns, and in many cases has developed genetic mutations to become resistant (refractory) to the initial treatment regimen.  This requires the use of alternative drug combinations to bring the disease back under control.

In yesterday's Boston Globe (11/21/2011), there was an interesting article treating the issue of drug resistance in many cancers.  While it did not discuss MM in particular, this is an issue in many other cancers and is a topic of intense research these days:

This article highlights the importance of biological research in developing new treatment strategies which can target the ability of the cancer to mutate into a resistant form.  In the meantime, it is crucial to have multiple effective agents for treating RRMM to help extend overall survival of MM patients.  I hope the forthcoming ASH Annual Meeting will have some exciting results to report in this arena.

I received the invitation today for the DFCI MM Patient Symposium to be held on December 17.  Unfortunately, instead of being held at the Westin Hotel like the last one, this meeting will be at one of the DFCI conference rooms.  They must have gotten the bill from the hotel by now.  Anyway, the agenda will include updates from the ASH Meeting, which will have just concluded.  I can't wait to find out what new breakthroughs are being made! 

Today was my normal weekly DFCI visit day.  Since the only drug on the schedule today is the dex, which I take at home, I was hoping to get a reprieve from having to go into Boston.  I called Kathy Colson yesterday to verify this, but unfortunately, she told me I had to go in anyway in order to get my blood drawn.  Rats!  Fortunately, I was staying overnight in Norwood, MA after attending the Patriots/Chiefs game last night (Go Pats!), so I was able to conveniently detour into Boston on my way home this morning.  However, there must be a way to get around this in the future for Day 22 of the cycle.  I'm planning to work on it.  Maybe if I'm on travel that day, I can have some local clinic take my blood and send it in, so I won't be on such a short leash.  We'll see.

I'm glad I have a week off the MLN and Revlimid to recover before beginning Cycle 5 of the clinical trial.  My blood test results today showed my white blood cell count (WBC) dropping below normal and my anemia getting worse.  In the past week, my WBC has dropped from 5.0 to 3.7, my RBC has dropped from 4.0 to 3.7, and my Hgb has dropped from 11.7 to 10.9.  No wonder I'm tired. Of course, staying up past midnight last night for the football game might have something to do with it.  I take the dex later tonight, so I should be full of piss and vinegar by tomorrow.  Anyway, I hope these numbers recover some by next week.

Last week, I had my other bad tooth extracted.  The tooth root broke and my dentist had to drill out some bone in order to get to it. He gave me a Vicodin prescription, but I didn't even need ibuprofen. I went back for a followup visit today, and he can't believe that I have had no pain from either extraction.  I'm recovering fine, but now it's a bit awkward not being able to chew anything on the right side of my mouth  I might consider some kind of flipper or partial denture, but I'll wait and see if I get used to this.  Maybe I'll just eat baby food and pablum for the rest of my life.  NOT!

My major dental work is now complete, so I should be ready to start taking the Zometa some time in the near future.  We meet with our medical team next Tuesday, so I should find out about that, as well as when they want to collect my stem cells for a future transplant.

Happy Thanksgiving to you all!  I know I have a lot to be thankful for.

Wednesday, November 16, 2011

More on ASH Annual Meeting

Heather and me
A ray of sunshine in my weekly visits to DFCI is my infusion nurse, Heather.  Tuesday is the busiest day at the Yawkey 7 Infusion Center, but Heather is always there with her engaging personality and upbeat attitude.  She takes the time to offer encouragement and support, and despite her busy schedule, she usually stays for a few minutes of chit chat instead of rushing off to her next appointment. Heather is another example of the wonderful staff I have had the good fortune to meet at DFCI.

Since I began this clinical trial on August 1, I have lost about 10 pounds.  For the most part, that's a good thing, since my BMI is now below 25, so I am no longer officially classified as a lard ass.  I wouldn't mind not losing another 10 pounds, however.  Since my MLN9708 dosage is scaled based on my computed body surface area (see the calculation in my September 4, 2011 post), my dosage has now been reduced from 5.8 mg to 5.6 mg.

Those of you who know me realize that I have a very slight tendency to display OCD.  When I get a bee in my bonnet, I usually beat it to death (to mix my metaphors).  Anyway, in my last post, I indicated that I was perusing the nearly 130 abstracts for the ASH Annual Meeting for papers being presented in the single category "Myeloma Therapy Excluding Transplantation".  I'm sure you will all be excited to know that I decided to analyze all of them, and I made up a spread sheet for all of the novel drugs currently undergoing clinical trials.  For each new trial drug, I give a short trial objective, ASH Abstract Number, whether it is for newly diagnosed (ND) or relapsed/refractory (RR) MM, other agents used (if any), agents used prior to RR, the overall response rate (ORR) as a performance measure, and any relevant comments.  I basically spent the whole day Monday on this project.  The bee died.

I'd hate to guess how many of you are breathless with excitement to learn the results of my efforts.  I wasn't able to shrink the spreadsheet down to fit in this blog space, which is a good thing, because it would have been unreadable anyway.  However, for those of you who are interested, I will be glad to email a copy of the spreadsheet.  I don't expect my email server to crash due to the sheer volume of requests.

As I previously mentioned, Pat Killingsworth will be attending the ASH Meeting as a freelance journalist, so I sent him a copy of the spreadsheet, just in case it would help him identify priorities in covering various papers.  He was very impressed (or so he said), and indicated it would be of help to him.  As for myself, I learned a lot from this exercise.  As I expected, there are multiple clinical trials underway for the well-publicised new drugs (carfilzomib, pomalidomide, vorinostat, panobinostat, elotuzumab, and ARRY-520).  What I didn't expect is that in addition to MLN9708, there are 15 other new drugs already in Phase 1 or 2 clinical trials for treating MM!  This list doesn't include the many pre-clinical drugs being developed (including JQ1) that may progress to clinical trials over the next couple of years.  This represents a robust research effort which holds considerable promise for transitioning MM from an "incurable" to a "manageable" disease over the next several years.  It remains to be seen whether Overall Survival (OS) numbers will continue to increase, but the prospects look pretty good.

Sunday, November 13, 2011

American Society of Hematology (ASH) Annual Meeting

First of all, for those of you who might like to comment on my blog posts privately rather than publicly, please feel free to email me directly at  I have added my email address to the "About Me" sidebar to facilitate this.

The Annual Meeting of the American Society of Hematology (ASH) will be held in San Diego from December 10-13, 2011.  Here is a link to the home page:
This is a huge event!  Hundreds of oral presentations and poster sessions will be devoted to Multiple Myeloma alone.  There will be a tremendous amount of information on new drugs, treatment regimens, and clinical trials coming out of this conference.  Hopefully, there will be significant advances in the treatment of MM to report.

On Saturday, December 17, there will be another patient symposium held in Boston sponsored by MMRF.  I hope and expect that we will get a good summary of the most promising advances coming out of the ASH Meeting at that time.  In the meantime, I have been perusing the abstracts for the ASH Meeting to try to get a feel for what might be coming.  Under the single topic of "Myeloma Therapy Excluding Transplantation", there are over 130 abstracts submitted, so this is a daunting task.  Most of the clinical trial results in the abstracts had a cutoff date of June, 2011, so the latest updated results won't be available until the conference.

Most of the new drugs being tested are for relapsed/refractory Multiple Myeloma (RRMM).  This is because the Revlimid/Velcade/Dexamethasone (RVD) front-line induction therapy is the number one standard therapy for newly-diagnosed MM.  However, the initial therapy drugs often don't work as well after relapse, so new drug combinations are sought to help extend the lives of MM patients indefinitely.  Some of the more promising drugs in advanced clinical trials are carfilzomib and elotuzumab (as replacements for Velcade), pomalidomide (as a replacement for Revlimid or thalidomide), and other secondary drugs, such as varinostat, panobinostat, and ARRY-520.

Carfilzomib has been particularly effective for RRMM, so there are now trials underway to use this as part of front-line induction therapy for newly-diagnosed patients, with encouraging results.  Of course, my personal favorite candidate front-line drug is my very own MLN9708, which will also be reported on at the Annual Meeting.  Here is a link to the abstract (#479):
As of June 29, 2011, there were only ten patients in this clinical trial.  Of the nine evaluable patients at the time, all achieved at least >=PR.  However, only one had achieved CR, and three others had achieved VGPR. (For definitions of these response categories, see my blog post dated September 28, 2011.)  This is a little disappointing.  I had hoped that a higher percentage of patients would have achieved VGPR or CR with MLN9708.  I am quite anxious to learn of the updated results (which will include me) to be presented at the ASH Meeting.

There will also be several presentations on the new JQ1 molecule. It will be interesting to see if there is anything new to report there.  I also checked the author index for  Dr. Paul Richardson.  He is listed as a co-author on 34 different papers to be presented at the ASH Annual Meeting!  Busy man.

Wednesday, November 9, 2011

New Medication Schedule

Now that I am in Cycle 4 of the clinical trial, the strict medication scheduling rules have been relaxed.  I am now taking the weekly dose of dexamethasone at home instead of at DFCI.  This is a real treat, because up until now, I had to wait exactly one hour at DFCI after receiving my MLN 0708 dose before they gave me the dex.  Now I can go home after the MLN, saving an hour of dead time at the clinic every week.  Even better, I am now allowed to take the dex whenever I want to, instead of one hour after the MLN.  This is great news, because I can take it later at night, just before going to bed, allowing me to get a full night's sleep before the steroid effect kicks in.  This has worked well for me the last two weeks.  Now I only have the second night where I have a little trouble sleeping (such as now, which is why I'm wide awake writing this blog post).  After the second night, the steroid effect wears off, and I'm usually fine for the rest of the week.

But wait, there's more!  I now don't have to go into DFCI at all on Day 22 of each cycle, since the only medicine I am scheduled to take that day is the dex, which I take at home!  So I get a week off every month!  Hooray!  Not only will this save on the commuting to Boston, but this will now make it easier for us to schedule vacations.

There is still one odd thing about their medication rules.  I have to bring my Revlimid in with me every week.  They then take the bottle to the pharmacy, take out one capsule, and write a prescription for that one capsule for me to take with the MLN!  Huh!  What's that all about?  I can take the dexamethasone at home every week whenever I want, and I can take the Revlimid at home every day pretty much when I want, so why they have to prescribe me one Revlimid out of my supply every Tuesday to take with the MLN is beyond me.  Maybe there is some valid medical reason for this, but I'm chalking it up to bureaucratic overkill.  In the grand scheme of things, I can live with this, but really now.

I keep being reminded how fortunate I have been so far with my MM.  During my Day 8 DFCI visit yesterday, I was talking to my nurse, Heather, about how I was feeling.  I told her I sleep more and get tired more easily than I used to, and that I notice from the blood tests that my anemia is still present.  She told me that 80-90% of her patients have much worse anemia, and many of them spend much of their time in bed.  I can still do pretty much anything I used to do, within reason.  For example, I played 9 holes of golf today (even though I sucked at it) and then used a power blower to clear leaves from my yard before teaching my Robotics elective in Haverhill this afternoon.  So I guess I don't have any reason to complain.  I also told Heather that I am not having any noticeable side effects from the medication (except the minor sleep problems from the dex).  She said many patients have bad side effects from the Revlimid, and she was surprised that I could even sleep at all after taking the dex.  This is not to say that I won't have my share of issues to deal with as time goes on, but I have been very fortunate so far.  I know I've said this before, but I'm very thankful for that.

Thursday, November 3, 2011

JQ1, Miracle Molecule?

The Multiple Myeloma blogging community is abuzz with new research recently published by a team of Dana Farber scientists involving a new molecule, JQ1, which shows great promise for treating MM.  This brouhaha has been stoked by a YouTube video starring one of the researchers, Dr. James Bradner.  Here is a link to the video:

Pat Killingsworth cited this video in his blog with some cautionary concerns about the glitzy presentation format, which comes across more like a TV ad for ginsu knives ("But wait, there's more!") than a scientific presentation.  However, other bloggers are fanning the flames of this new discovery.   I agree with Pat that it is a bit early to get too excited by the research at this stage.  It will be about two years before this is even ready to conduct human clinical trials.  However, it's hard not to be just a bit enthusiastic.

A reasonably understandable description of this article appeared in Science Daily on 9/9/11:

Note that Dr. Richardson is one of the coauthors!  Wow!  I can't wait to talk to him about this at our next visit. The full article was published in the journal Cell on 9/16/11.  Here is the link to the online version:
I can't even understand the summary section, so I'm sure I would not be enlightened by reading the whole article.

JQ1 may or may not be the silver bullet that finally cures MM, but it is exciting to see how quickly the research is progressing in finding new ways to fight this disease.  I am pleased to be part of this research with the MLN 9708 clinical trial, not just for myself, but for the chance to help others.  This trial has just gone into Phase II, where they intend to recruit hundreds of new participants.  If my results (along with the other Phase I participants) to date are any indication, this drug could be the next significant advance in MM treatment.

It's all good.

Tuesday, November 1, 2011

Cycle 4 Day 1 (Do-over)

My foot woes continued during the week.  After the first IV antibiotic at DFCI, my foot felt better Wednesday morning, but it gradually got worse again, despite the dicloxacillin antibiotic pills.  My right foot was also bothering me with the same problem, so I wasn't sure which one to limp with the most.  By Thursday night, I was in a lot of pain and I had developed a fever besides.  We were at a hotel in Hartford after visiting Jason and Nadia, so we got a little worried.

I put in a call to Dr. Richardson late Thursday night.  He was asleep at the time and was not on call, so he didn't call back until Friday morning.  Fortunately, my fever was gone by then.  As it turns out, I was supposed to have paged Dr. Paba-Prada, who is on call 24/7.  That protocol was never made quite clear to me before.  This is good to know for the future. 

Anyway, Dr. Richardson prescribed another antibiotic, Avelox, to supplement the first one.  By Saturday morning, nothing had improved, so I paged Paba-Prada.  She suggested I go to an ER for evaluation, so we headed to the Anna Jaques Hospital in Newburyport.  The attending physician, Dr. McLaulin, was very good and he ordered another IV antibiotic.  That finally seemed to do the trick.  By Sunday morning, both feet felt much better, and they have continued to improve every day.  Today they feel almost back to normal.

Today we we met again with our medical team at DFCI.  Dr. Richardson is out this week, so Dr. Schlossman covered for him.  The news was good all around.  My foot has healed enough that they allowed me to go back on the Clinical Trial again as of today.  But the most exciting news is that the protein pathology report shows that the M Spike has almost disappeared and could not be measured!  Yippee!  This means I have achieved an almost Complete Response (CR) to the treatments.  Kathy Colson and Dr. Paba-Prada were visibly excited by these results.  Kathy said this new MLN 9708 drug is really doing wonders.

Here is a summary table of my test results for the first 3 Cycles:

Test Name Reference Range 8/1/11 8/30/11 9/27/11 10/25/11

Gamma M Spike 0 g/dL 1.96 0.41 0.13 0.0!
IgA 70-400 mg/dL 3180 659 148 80
IgG 700-1600 mg/dL 246 248 292 249
IgM 40-230 mg/dL <5 9 15 28

I still have a ways to go, in that the Immunofixation still shows the presence of a faint M Spike, and my normal immunoglobulins are low, which means my immune system is still weak.  Also, my anemia got slightly worse this past month, and I get tired easily.  But those concerns pale in comparison to knowing that the myeloma cells have been nearly banished from my body!  Not only that, but I'm feeling really good!

I don't think I can say anything more to top that, so I'll just sign off for now.

Wednesday, October 26, 2011

Cycle 4 Day 1

Yesterday was our day to meet with the medical team.  Over the weekend, the problem with my left foot had gotten worse, so I called Dr. Paba-Prada on Monday.  She said the symptoms sounded like gout, but suggested I see my primary care physician.  So I did that on Monday, and the Dr. covering for him said that it looked to her like gout.  I was quite relieved that it wasn't related to the MM, but it still hurt.  Monday night was no better, so I hobbled painfully into our appointment on Tuesday.  Dr. Paba-Prada and Kathy Colson both thought of gout, but were a bit unsure because of some swelling of my whole foot.  They wanted to see what Dr. Richardson thought.

When Richardson came in, it took him about a minute to make the following conclusions:  it is not gout, but it is cellulitis, a dangerous bacterial infection!  If not treated immediately, cellulitis can lead to such complications as blood poisoning, meningitis, or deep vein thrombosis (DVT), to name a few.  Richardson was particularly concerned about this last one, since I am already subject to the risk of DVT complications from the Revlimid.

The decision was made to interrupt my MM therapy for a week to deal with this issue.  I received an IV antibiotic infusion at DFCI and am now on a prescription of Dicloxacillin for the next 10 days.  I also have to use iodine, antifungal ointment, and foot powder to heal the original cracked skin between my toes, the source of the infection.

In addition to delaying my MM treatment, I had to put off my planned tooth extraction today until the cellulitis has healed.  They gave me a heads up that my Cycle 3 protein results might be affected by this, so I shouldn't expect my M Spike to drop significantly this month.  Darn!  The results should be available later this week or by Monday, so we'll see.

We are really glad we had our appointment with Richardson yesterday and were able to deal with this issue.  Today, the foot is definitely better, so the antibiotic is working.  All in all, this is just a small bump in the road.

Sunday, October 23, 2011

Foot and Mouth Disease

I'll start with the mouth.  Thursday, I had my upper right canine tooth extracted and a new temporary 4-tooth bridge/crown combo inserted.  The tooth was badly decayed, so he had to drill out some bone in order to get to it.  Despite that, the procedure went easier than I expected, and I was out of there in less than two hours.  It seems to be healing well without pain.  I go back next week to start on the other tooth that has to go.  Then I have to wait for both of them to heal before starting on the bisphosphonate.

Now for the foot.  For the last couple of days, I have had a lot of pain in my left foot and big toe.  I'm not quite sure what this is, but I'm hobbling around like a cripple (or crip if I wanted to be politically incorrect, which, of course, I don't).  I'm hoping it's not related to the MM.  I don't recall hitting or banging it recently.  One possibility is that it could be an attack of gout.  I have had some similar pain in my toe on occasion in the past, and it went away by itself after a few days.  We have our monthly appointment with Dr. Richardson on Tuesday, so I might just mention this to him then.  In the mean time, I wanted to finish power washing the roof, but since I can barely walk, perhaps I'll put that off for a while.

I was saddened to read the latest entries in Pat Killingsworth's blog:  Not only has his MM returned a scant 3 months after his stem cell transplant, but he has now just been diagnosed with melanoma as well!  When it rains, it pours.  Fortunately, it's a Stage 0 in situ tumor, which means it won't metastasize if treated soon.  This is the same thing that I had a few years ago, and I'm fine.  Pat is going on a regimen of Velcade/Rev/dex to try to stem the recurring myeloma.  I found that there is a Phase I clinical trial with MLN 9708 for patients with relapsed MM available at his cancer center, but apparently, he doesn't qualify at this time.  Poor guy has had so many decisions to make and a tough road ahead.  I admire his continued grit and humor through all that he has been through.  He is an inspiration to me.

On a more upbeat note, I found a link to a You Tube video on Pat's blog by Dr. Kenneth Anderson, Director of the Lipper Multiple Myeloma Center at DFCI.  Dr. Richardson referred to Anderson as his mentor at the recent patient symposium we attended:

You can understand why I feel I'm in good hands with this crew.

Tuesday, October 18, 2011

Writing Workshop

Today before my last Cycle 3 treatment, I attended a brown-bag lunch writing workshop on creative nonfiction, which is using literary craft in presenting nonfiction to make your material more interesting and more accessible.  There were about seven of us, and what an eclectic bunch!  From a tech writer who is struggling to write a personal journal, to an obituary writer who wants to get more creative, to a film documentary maker who blogs on politics and humanity and can't figure out why all his blogs are always the same length, we're as different as can be.  This is the first in a series of six monthly workshops, where we we will be asked to write for and critique each other.

I found it quite interesting.  I feel as if I learned a few things.  We were each given 5 minutes to write on one of several topics.  Then the leader asked each of us to read our best sentence aloud.  J.J., the documentarist,wrote, "Julian arrived at the locked gate at dusk, a hammer in one hand and a flashlight in the other."  Now there is vivid detail that conjures up quite an image.  I don't know if this is really creative nonfiction.  If so, I want to know what happened with Julian.

Our assignment for next month is to read other major blogs, such as Salon, Huffington Post, Daily Beast, etc. to find a style we would like to emulate, i.e., to find our voice.  We are also to bring 10 copies of something we have written (one page max) to share with the others.  I think I'm going to like this.

Oh yes, I also had a blood draw and some medication today.  the blood work came back fine.  Since this begins the last week of the cycle, I only got the dexamethasone today.  I had my last dose of MLN9708 last week and my last daily dose of Revlimid yesterday.  This week I will recover before beginning Cycle 4 next week.

I'm a little concerned about my vitals today.  My blood pressure has been lower than normal for the last couple of months.  I have been on blood pressure medication for what seems like forever, and I have consistently measured in the high end of normal range, say about 135-140/85-90, for many years.  For the last month or so, I have been at around 124/72, which is a good thing.  However, today I was 98/62!  Holy crap, that's almost comatose.  What's that all about?  I noticed today that if I stand up suddenly or move too quickly, I feel a bit lightheaded for a few seconds.  I mentioned this to my nurse, Heather, and she suggested that I may not be hydrating properly.  I told her that I have been used to hydrating with my favorite malt-based beverage.  Now that I've cut back, I must not be drinking enough healthy stuff.  I need at least 2 liters a day of water, juice, etc. to take up the slack.  There may be another explanation for this, however.  Before going into DFCI today, I spent 2 hours climbing around on the roof of the annex spraying an anti-mildew concoction and then rinsing it off  with a power washer.  I barely had time to change and rush into Boston for my seminar.  Maybe I overdid it just a tad.

Another issue is that I keep losing weight.  I've lost about 6-7 pounds over the last couple of months.  So today when I got home, I decided I had to eat.  I had some delicious leftover mini pork roast that I made for myself over the weekend while Gretchen was checking out potential future home sites in Appalachia following my dental work.  After eating that, I was still a little hungry, so I decided to go out to eat.  Gretchen wasn't hungry, so I went out myself.  I had a choice...emulate the Red Sox pitchers and go for bucket of fried chicken, or dig into a big juicy steak.  After pondering this at length, I chose the latter, so I went to the Grog in Newburyport and had a delicious 12 oz. Sirloin steak with mashed potatoes and spinach.  I can't believe I ate the whole thing.  On the way home, my only regret was that I didn't get a dessert, like a piece of chocolate cake or a creme brulee.  I have a sneaking suspicion that the dex may have had something to do with my suddenly resurgent appetite.

Thursday, October 13, 2011

Dental Woes

I just came back from the dentist, and my fears have been realized.  I'm going to lose my upper right eye tooth (#6).  It was too badly eaten away to be saved by root canal without extensive dental surgery, which I should avoid because of my pending bisphosphonate treatments.  Unfortunately, it served as one of the supports for a 3-tooth bridge, so now I will have to extend to a 4-tooth bridge to span the gap of the (soon to be) missing tooth.  There was a time when I'd have given my eye teeth to get something I really wanted.  I should have.  Now it's going to cost me $6,175 just to get rid of one!  Boy, dental insurance sure would be nice.  I now have a temporary bridge to hold me over until my extraction appointment next week.

This still doesn't deal with my lower right tooth #28, which appears to have developed an abscess since having a root canal done in 2005.  According to my endodontist, the root may have cracked.  The unknown here is whether this is something that needs to be dealt with soon or whether it might stay this way for a long time.  That one supports a bridge as well, including a cantilever that extends toward the back.  If I lose that tooth (including the cantilever), I will have no molars left on that side of my mouth, making chewing a bit difficult.  I can't get a new bridge there, because there is nothing left on that side to support one.  It was previously determined that my jaw bone is too narrow for an implant, and besides, I don't have time for that because of my impending bisphosphonate therapy.  I would probably have to have a removable denture fitted for that space.  I have a decision to make here.  Do I let it go and hope for the best, or have it taken out and move to Appalachia?  Help me here.

All in all, these are small worries in the grand scheme of things.  I just have to deal with them and move on.

Wednesday, October 12, 2011

Dex Effect

OK, here it is, 5:00 am, and I've been awake since 2:00 after my dose of dexamethasone yesterday.  (I'll dispense with the Tarzan yell video this time.)  There's not a lot else to do around here at this hour, so I thought I'd add to my blog.

In my last post, I was complaining about the wait times at DFCI.  However, there is a silver lining to that.  The Dana Farber Blum Patient and Family Resource Center is an excellent place to relax and learn while waiting.  They have a lending library with books, brochures, videos, and CDs, along with several computer stations.  There is a private room which can be reserved for relaxing, meetings, or teleconferencing.  They even have a 1000 piece jigsaw puzzle that you can work on in your spare time.  They also sponsor numerous talks and seminars.  Next week, I will attend a writing workshop there entitled, "Writing Your Story:  From Blog to Memoir", led by Amy Boesky, a professor of literature and creative non fiction at Boston College.  I'm doing this for your sake, my loyal readers.  I hope to find out how to make make my blog more interesting and appealing.  We'll see.  You will all be the final judge of that.

 A great benefit of the computer access is that I can log onto, which is a medical online resource available to clinicians and patients, accessible without a subscription from the DFCI computers.  I am finding this to be a great help in doing research on MM.  Normally, when I Google a medical topic from my home computer, I get a shitload of useless information.  For example, if I make a query about a blood test, half of the articles that come up describe what to do to prepare for the test and what the test will feel like (as if I don't know), without any information about why the test is being given or what the results mean.  It's a real pain to weed through all that crap.  How refreshing it is to use UpToDate to get real clinical information!  This is how I was finally able to satisfy myself yesterday about the M Spike issue I reported on in my last post. (I may not have satisfied you, but I satisfied myself, so I'm going to let it go.)

I mentioned Pat Killingsworth's blog in a previous post (Sept. 25).  He wrote a book on his experience with MM, Living With Multiple Myeloma, which Gretchen ordered.  We both read it and found it quite informative.  The Blum Resource Center doesn't have much literature specific to MM, so I ordered another copy and donated the first one to to their library yesterday.  Hopefully, other MM patients at DFCI may find it to be helpful.

I visited Pat's blog today and I found out his bad news:
After 4 years of remission, Pat underwent an autologous stem cell transplant (ASCT) in July, and he just had his 3-month followup.  Unfortunately, his MM is back already and he has developed more bone lesions.  He now has to go back on consolidation therapy to try to beat it back down.  Bummer!

Over the next couple of months, I will be doing extensive research on my own options for ASCT.  At this point, I am quite leery about jumping into this option too quickly, considering all the associated risks, pain, suffering, expense, and uncertain prognosis, especially at my age.  So far, Dr. Richardson and I seem to be on the same page with this.  I intend to inform myself fully on this issue, so that I may have an intelligent dialogue with Dr. Richardson when the time is ripe.

Tomorrow, I see the dentist to start my major dental work.  When this is all done, people may think I'm from Appalachia with my two remaining teeth.  Actually, being from Western Pennsylvania, I kind of fit the bill, so that won't be so far off the mark.

Now it's almost 7:00 am.  It's starting to get light out, so I have a choice to either start one of my projects or try to go back to sleep.  I'm not sure which one yet, so I'll let you know in a future post. ;-)

Tuesday, October 11, 2011

More on M Spike and IgA levels

Well, we now appear to have an embarrassment of riches, going from no email notifications to sending out three full posts at a time.  I'm still working on this.  My objective is to simply notify the email followers that a new post has been added, so they can go to the blog website to read it.  I'll fiddle with the settings tonight and see how it works out tomorrow.  Stay tuned.

Today was my infusion day at DFCI.  All went well.  The blood test results looked pretty good, although the anemia numbers (RBC, HGB, HCT) got a little worse compared to last week.  I'm getting kind of used to this weekly trip into Boston.  Since my appointments are usually in the afternoon, the trip in is a breeze, but I do have to fight rush hour traffic coming back home.  Most of my time at the clinic is spent just waiting.  First I get a blood draw.  Then I have to wait about two hours for the results to come back.  Then I can take the MLN 9708 drug, along with my Revlimid that I bring from home, and then I have to wait another hour before getting the dexamethasone.  My nurse, Heather, and I both think it's kind of ridiculous for me to just sit there and wait that last hour.  Why can't they just give me the dex up front and trust me to take it on time?  After all, they trust me with the Rev.  Heather and I are conspiring to find a way around this.  Besides, that would help me to miss the Boston rush hour traffic on the way home.

I've done a little more research on interpreting the M Spike from the Serum Protein Electrophoresis Test (SPEP) and the total immunoglobulin type and level from the Serum Immunofixation test.  The SPEP test is a simple screening procedure that identifies the presence of a likely monoclonal protein and gives an approximate estimate of the magnitude of the M Spike.  To validate that the spike is indeed monoclonal, the immunofixation test is then performed using monospecific antibodies.  Immunofixation is more sensitive than SPEP, and also determines the specific heavy chain and light chain components of the monoclonal protein (IgA Kappa in my case).  However, unlike SPEP, immunofixation doesn't estimate the size of the M protein, as it includes the level of polyconal protein as well.

I have argued previously that subtracting the M Spike level from the total immunoglobulin level theoretically should give an estimate of the normal polyclonal immunoglobulin level.  However, both tests are subject to errors of different types, so that this comparison is not done in practice.  Besides, such an estimate of the polyclonal protein level is not particularly useful.  What is important is: Is there an M Spike, and what kind is it?

The bottom line is that once the presence of the monoclonal protein has been established via immunofixation, this test doesn't need to be performed again during treatment unless needed to document a Complete Response (CR) to therapy.  Patients can be followed using only the M Spike level from the SPEP test.  If the M Spike disappears, a negative imunofixation result validates that there is no detectable monoclonal protein.  That, coupled with a bone marrow test showing less than 5% plasma in the marrow, is sufficient to validate a CR.  Of course, this is what I am hoping for from my therapy over the next few cycles.

I think this horse died a while ago and I am continuing to beat it, so I will refrain from boring you any further on this topic.  I can already hear your sighs of relief.

Monday, October 10, 2011

Problem with email notifications

For some reason, people are no longer receiving email updates from Feedburner when I create new posts to my blog.  I'm not sure why this is, but I've been trying to fiddle around with my Google Feedburner settings to correct the problem.  It would help if I had a clue about how to do this.  Most of the stuff on their website is Greek to me.  Anyway, if you bookmark my blogspot website www://, you can check it out and see that I haven't been slacking off and I have been updating the blog at reasonable intervals.

Of course, since the email feed isn't working, you will have no way of knowing about this post, so you won't be able to read this message unless you follow the suggestion above that you can't read about.  Hmmm.  Now there's a conundrum.  If my blundering attempts to fix the email feed problem don't work, I may have to manually email everybody every time I update the blog.  I hope it doesn't come to that.

If anyone has any suggestions on how to fix this, I would appreciate it.

Monday, October 3, 2011

Cycle 2 Test Results

To review, in July, I was diagnosed with Multiple Myeloma based on the following criteria:
  • Monoclonal IgA Kappa level > 3000 mg/dL:   (3180)
  • Bone marrow biopsy plasma cells > 10%:   (62%)
  • International Staging System (ISS) Level 1 (B2-M < 3.5 mg/dL, albumin >= 3.5 mg/dL):  (3.3, 3.5)
Fortunately, I had no organ or tissue impairments (no bone lesions, normal calcium levels, and normal kidney function).  My only symptoms were osteopenia of my lower spine (from MRI) and moderate anemia.  Even  the osteopenia was not deemed severe and was within normal bounds for someone my age.

As you know, after the first infusion cycle in August, the results were excellent, showing about 80% reduction in the M Spike and IgA levels.

Last Tuesday, 9/27/11, I had blood drawn and turned in my 24-hour urine sample to get my protein levels checked after the second infusion cycle.  The lab tests for both the blood serum and urine include Protein Electrophoresis and Immunofixation, which provide a measure of the M Spike and determine the IgA, IgG and IgM immunoglobulin levels.  A serum free light chain test was also performed to determine the Kappa and Lambda light chain levels and ratio.  I have been anxiously awaiting the results all week, and I finally got  the final numbers today.

The bottom line is that things are still going great!  This past month showed another significant decline in the gamma M Spike and IgA levels.  The following table shows how the major results have progressed since August 1.

Test Name Reference Range 8/1/11 8/30/11 9/27/11

Gamma M Spike 0 g/dL 1.96 0.41 0.13
IgA 70-400 mg/dL 3180 659 148
IgG 700-1600 mg/dL 246 248 292
IgM 40-230 mg/dL <5 9 15
Kappa/Lambda ratio 0.26-1.65 578 26.7 4.5
24hr urine total protein <102 mg/24 hr 392 60 38
Albumin 3.7-5.3 g/dL 3.5 3.8 3.7
Beta2-microglobulin <2.7 mg/L 3.3 1.9 1.8
Red Blood Cell Count 4.2-5.6 M/mcL 3.4 3.7 3.9
Hemoglobin 13.2-16.7 g/dL 11 11.3 11.7
Calcium 8.8-10.5 mg/dL 9 8.8 9
Blood Urea Nitrogen 9-25 mg/dL 12 14 13
Creatinine 0.7-1.3 mg/dL 0.9 0.9 0.8 

As you can see, the M spike is down 93% so far, and the IgA level is down 95% into the normal range!  The Kappa/Lambda ratio is down 99% to a nearly normal level.  The urine protein is also down 90% and is well within the normal range.  Also, beta2-microglobulin and albumin are back to normal levels.  All this is good, implying that I have already achieved a Very Good Partial Response (VGPR) according to the criteria I showed in my last post.

I am still anemic, but those numbers (RBC and Hemoglobin) are improving.  The other numbers show that my calcium and kidney functions remain fine.  I am thrilled!  I realize that there is still a ways to go here.  My IgG and IgM numbers are still below normal and the M Spike hasn't gone away yet.  However, these are very encouraging results.  I don't want to get too far ahead of myself here, but I am very hopeful of achieving a Complete Response (CR) after a few more infusion cycles.  That would be totally awesome!  At the risk of repeating myself, I feel like I'm a really lucky guy.

Now I'm going to share something that I wasn't sure I was going to blog about.  However, since this blog is about my journey, I should probably share most of the relevant events that occur along the way, however embarrassing, humiliating, or downright stupid they might be.  Now I'm sure there are a few of those among you who think that I'm a pretty smart guy who has my shit together.  Well, for those of you in that camp, I'm about to disabuse you of that notion.

Last week, the unthinkable happened.  While we were at DFCI for my first infusion on Cycle 3 of the protocol, I had brought my empty vial of Revlimid with me.  (Don't ask me why...Gretchen did, but I had no valid answer.)  Anyway, after picking up my new prescription and taking my first capsule, I decided to finally throw away the old empty vial in the trash bin on our way out.

The next day, Gretchen left for a few days to visit her friend, Marilyn, in New York. I forgot to take my Revlimid at the normal time of 5:00, but I suddenly remembered it as I went to bed about 11:00.  I went to get the prescription out of my valise, and you guessed it...the vial was empty!  I had thrown away the full bottle of Revlimid and brought home my old empty prescription.  I suppose you can imagine my state of mind at that point. In addition to feeling I richly deserved a "Hi, I'm Stupid" stamp on my forehead, I thought about the implications of tossing a $3,300 bottle of pills down the poop chute.  Did I think Blue Cross would be understanding about this?  NOT.  Oh yes, and missing too many doses and maybe getting thrown off the clinical trial, get the picture.  The stupidity, the embarrassment, the humiliation, Oh Shit!

You know, there is an interesting thing about getting diagnosed with an incurable fatal disease.  It changes one's perspective on life.  There was a time when something like this would have devastated me for days.  However, as upset as I was, I figured that, "This too shall pass".  In the grand scheme of things, the money doesn't matter, and somehow, things would work out.  Someday, I would look back on this moment and chuckle...ha ha ha.  It was too late to do anything about it then anyway, so I went back to bed and actually fell right to sleep.  I'm glad Gretchen wasn't home to share the agony of this.  I think she would have been more upset than I was.

The next day, I started working the phones early.  Thank God for Dana Farber and Kathy Colson.  When she heard the news, she went right to work.  By the end of the day, she and her team had a new Revlimid prescription all ready for me to pick up the next morning.  Not only that, but Celgene was going to charge me $300 to replace the prescription (still better than $3300), but Kathy talked them down to $20!  I couldn't believe it!  Have I mentioned before that I think I'm one lucky person?  I didn't deserve to step in shit and come out smelling like a rose, but it happened. 

Now you know that I'm just a normal stumbling idiot, trying to muddle my way through, just like the average schlemiel.  By the way, I don't think I'll ever take an empty bottle of medicine back to Dana Farber, ever again!

Wednesday, September 28, 2011

Followup to Last Post

OK, I didn't come back last night to expand on my previous post.  I was sorely tempted to, since I lay awake in bed until after 3:30 this morning, but I took pity on you.  

You might say, 'Why don't you take a sleeping pill?".  Well, I'm a bit loath to add yet another pill to the impressive array I already take every day, enough to choke a good-sized horse.  The sleeplessness usually only lasts one night, so I can live with it.  Actually, I should get outside with a flashlight and work on some of those house projects.

It's a good thing I'm on a protocol that calls for low-dose dex (40 mg, once a week).  Prior treatment regimens used to call for high-dose dex.  I really feel sorry for those poor blokes.  If I were on high-dose dex, I would have been out in the treetops in our yard last night, swinging from branch to branch. 

While we were at the recent Patient Symposium, one of the doctors mentioned a patient requesting to get off the dexamethasone.  Another of the panelists jokingly questioned whether it was the patient or the family members making the request.

I promised to explain the MM response criteria in my last post, so here it is if you can decipher it:

International Myeloma Working Group uniform response criteria                       

Category                                                                           Criteria ______________________________________________________________________
Stringent complete response       (sCR) CR as defined below PLUS:
Normal SFLC ratio, AND
Absence of clonal plasma cells in marrow by immunohistochemistry or flow cytometry _____________________________________
Complete response (CR) Negative immunofixation on the serum and urine, AND
Disappearance of any soft tissue plasmacytomas, AND
≤ 5% plasma cells in bone marrow ______________________________________
Very good partial response (VGPR) Serum and urine M-protein detectable by immunofixation but not on electrophoresis, OR
≥ 90% reduction in serum M-protein plus reduction in 24h urinary M-protein by > 90% or to < 100 mg/24h _________________________________________
Partial response (PR) ≥ 50% reduction of serum M-protein, AND
reduction in 24h urinary M-protein by ≥ 90% or to < 200 mg/24h, AND ≥ 50% reduction in the size of any plasmacytomas present at baseline _________________________________________
Stable disease (SD) Not meeting criteria for CR, VGPR, PR or progressive disease __________________________________________
Progressive disease (PD)

At least ONE of the following:
> 25% increase in serum M-protein in 3 months (absolute increase must be > 5 g/L), OR
> 25% increase in urine M-protein in 3 months (absolute increase must be > 200 mg/24h),  OR
> 25% increase in bone marrow plasma cell percentage (absolute percentage must be > 10%), OR
Development of new bone lesions or soft tissue plasmacytoma, OR Development of hypercalcaemia