Search This Blog

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.