Anniversary

Sorry for the delay in updating this blog.  Last week was pretty busy, with our trip to Niagara Falls and our 25th Anniversary Party yesterday.  What a wonderful week it was!  The celebration yesterday reaffirmed everything that is important in life...love, family, friends.  What else matters?  Special thanks to Holly and Jeff for making it such a memorable occasion.  We are still basking in the afterglow.

Here is a picture of us taken from the Maid of the Mist in front of the American Falls.  As you can see, I am starting to get my hair back.  Yay!  Some have said that it looks good short and makes me look younger.  I don't know.  I might try keeping it short for a while.  I'm just so glad to have it growing back in.  By the way, I can offer some good deals on used hats.


 On our way back from Niagara Falls, we stopped to have lunch in Buffalo with a fellow MM patient I met through my blog.  We had a delightful time comparing notes on our respective journeys.  We both like to be well-informed and take an active role in our treatments, so it was a good learning experience for me.  He has given me some good tips on areas to research further and more questions to pursue.

It is helpful to see how we  patients may have different priorities on such issues as aggressiveness of treatment, degrees of remission, side effects, quality of life, etc.  Everyone has a unique story, and there is no cookie cutter way to treat this disease.  It is helpful to keep an open mind on all of this, and it is important to keep up to date with the fast pace of research and to keep sharing stories with fellow patients.

Today marks two weeks since my misadventure with the ladder.  For the first time, my upper body has started to feel almost normal.  I can finally function without any painkillers, which is great. I have an appointment to followup with the orthopaedic surgeon on Wednesday, just to check on any collateral damage.  I'm optimistic for a full recovery from the fall.  I'm not a cat, so I know I don't have nine lives.  I don't know how many I have, but I just used up one of them, so just in case I don't have any more left, I will take care to preserve the one I have just been given.

Tomorrow I go into DFCI to start Cycle 2 of my consolidation thereapy.  So far, I still have no peripheral neuropathy (PN) issues with the Velcade, so I am cautiously optimistic that I can get through this consolidation phase without any PN problems.  I will meet with Dr. Richardson, and I plan to ask him whether he thinks my recent faint IgG Lambda M Spike is simply a "secondary MGUS" or maybe something more clinically significant.

While we were away last week, there was good news on the myeloma drug front.  An FDA advisory panel strongly recommended approving carfilzomib (Kyprolis) for patients with relapsed and refractory MM.  Here is a link to the Myeloma Beacon article:  Carflizomib FDA Advisory Committee.  Kyprolis is a proteasome inhibitor which acts in a similar way to Velcade.  Clinical trials have shown impressive results with fewer PN side effects than Velcade.  It is now expected that the FDA will approve this drug in the next month.  This is good news for all MM patients who run the risk of becoming refractory to Velcade.  (Refractory means it doesn't work anymore.)  This could be another weapon for me downstream in my MM journey when I have to deal with a relapse situation. 

Fall-owup

A week ago today I performed my ridiculous acrobatic stunt off the ladder.  I am still pretty sore, deservedly so, but I think I am slowly healing.  I had more X-rays taken at DFCI on Friday which confirmed that no major bones (shoulder, ribs, back, etc.) were broken.  Fortunately, I have been able to find a comfortable position to be able to sleep at night, although getting out of bed has been an effort.

I have gotten a lot of feedback on this incident from family and friends.  While there is an overwhelming consensus confirming the stupidity my act, I have also gotten a lot of encouragement, love, and support.  Many have been empathetic with my anxiety to start doing normal things again after my stem cell transplant.  Others who know how stubborn I am realize that it has a good side and a bad side.  The good side is what helps me deal with this MM in an aggressive and positive manner.  I think that has helped me respond well to my induction therapy and recover quickly from my transplant.  The bad side (like the Dark Side of the Force), is what impels me to do rash things that would be better left undone.  I believe that I have fully internalized the lessons of my folly, and I plan to control the Dark Side better in the future.  May the Force be with me!

I have completed the first cycle of my consolidation therapy, and this is my rest week.  I start Cycle 2 next Tuesday.  Tomorrow, Gretchen and I are off to Niagara Falls for two days to celebrate our 25th wedding anniversary.  I have missed our anniversary for the last 20 years, because I have always spent this week of June sailing in Block Island Race Week.  While I will miss the camaraderie of the crew, as well as the excitement and challenge of the races, I am looking forward to just spending some time celebrating this special occasion with Gretchen.  After last week's debacle, I have a lot to celebrate!

The Incredible Stupidity of Being

Some days are really great...others are not.  Today was one of the others, although upon reflection, it has been a much better day than I have any right to expect.  One of my favorite quotes is from the old movie, "The Friends of Eddie Coyle", which goes: "This life's hard, man, but it's harder if you're stupid!"  Just call me stupid.

Today I did something I had promised both Gretchen and Jeff I would not do.  While she was out, I decided to trim some branches from trees near the house with my ladder and chain saw.  I don't know what got into me.  What was I thinking?  So I got out the extension ladder and proceeded to start trimming.  One of the branches was pretty far up, so I had the ladder extended so I could reach it.  Just as I cut the branch, the ladder slipped out from under me.

I'd like to think that I looked like Greg Louganis, the diver, on my way down; you know, a double gainer with back tuck.  But I suspect I looked more like a falling sack of shit.  In any case, I landed flat on my back in the grass.  I'm not sure how high I was...perhaps 10 to 12 feet off the ground.  I've often wondered what goes through peoples' minds during a fall like that.  Does their whole life pass before their eyes?  I worked it out from 1/2gt*t that it probably took about 0.8-0.9 seconds for me to hit the ground.  My life, such as it is, did not pass before my eyes.  The only thing that I  can recall thinking during that time was "Oh shit!" (How many times can you think "Oh shit!" in 0.8 seconds?)

I didn't dare try to move, not knowing if any part of my body would respond if I tried.  I might have actually passed out for a short time, as I recall seeing a beautiful grid of blue and silver stars (no, I'm not a Dallas Cowboys fan).  I wondered what that could be, and then I found myself staring at the sky.  Where am I, I wondered?  Reality quickly set back in.  I found myself nestled neatly between the ladder on my left and the chain saw on my right.  To my surprise, I discovered that I could move all my limbs.  I then reached over and shut off the chain saw, which was still running.

I staggered to my feet and checked out my range of motion.  Amazingly, everything worked!  I noticed that the pinkie on my left hand was at an odd angle, obviously dislocated.  Other than that and some pain in my left shoulder and ribs, I felt a lot better than I had any right to expect.  I wobbled into the house and called my family doctor, who took me right away.  When I got there, the nurse pointed out that I was bleeding from my forehead.  I didn't feel anything and hadn't looked in a mirror, but it appeared as if I had run into Mike Tyson in a dark alley somewhere.  Yikes!  Fortunately, those cuts were superficial.  I have no memory of how those came to be.

My family doctor didn't want to mess with my finger, so he set me up with Dr. Mattheos, an orthopaedic surgeon  in Newburyport.  After some painful manipulation, he got my pinkie back into place.  X-rays showed it wasn't broken.  However, the ring finger next to it is broken.  (That makes it a little tough to type this blog, but I'm making do.)  The amazing thing is that X-rays of my shoulder and back showed no breaks!  It's really hard for me to believe that the only thing broken during that fall is one little finger.  I would have expected something big to be fractured, especially as Multiple Myeloma weakens the bones.  I'm still shaking my head in wonder.

By then, my whole body was feeling pretty banged up, but I'm feeling somewhat better now.  It's amazing what a couple of vicodin can do (thank you, Dr. Mattheos).  Tomorrow will be the real test.  I have an appointment at DFCI at 8:00 tomorrow morning for my infusion.  I should probably let Dr. Richardson know about my little incident.  I suspect he won't be amused.

There are lessons to be learned from today's events.  I hope that I am not too stupid and stubborn to learn from this.  I got a pass today.  Next time I might not be so lucky.  Can I be smart enough in the future not to push my luck?  I can only hope so.

More Questions for Richardson

Yesterday I got my first consolidation treatment of Velcade, Revlimid, and, of course, dexamethasone.  Based on experience, I took the dex last night, which allowed me to get a decent night's sleep.  I don't know about tonight though.  I might just be in the mood for an extended post, so grab your seat belts.

After yesterday's meeting with Dr. Richardson, there were still some questions on my mind about the recent immunofixation test results and their interpretation.  Everyone (Richardson, Claudia, Muriel) was upbeat and telling me that the post-transplant finding of a faint M Spike was no big deal, because these "aberrant" results are often noted after a stem cell transplant.  OK, maybe, but I was not completely put at ease by this explanation.  It seemed a little too pat and dismissive for me.

One thing kept bugging me.  My most recent immunofixation test revealed the presence of a double gammopathy with an IgG Lambda clone.  This is the first time while I've been at DFCI that tests have demonstrated anything other than IgA Kappa MM.  Where did this IgG clone come from?  This triggered my memory that I had seen this somewhere before.  I mentioned to Dr. Paba Prada yesterday that I recalled an early test result showing that I had two monoclonal gammopathies.  She couldn't find that in the DFCI test records, so today I went through my past tests and found what I was looking for.  When I had my first bone marrow biopsy back in May 2011 (ouch...painful memory of Dr. Rabinowitz of Lahey Clinic), the pathology result showed that I had both IgA Kappa and IgA Lambda monoclonal gammopathies!  Somehow, this result had faded into the background of my memory over the past year.

So, today I decided to try to educate myself.  The paper I mentioned in my last post about multiple MM clonal gammopathies piqued my interest, so I decided to do a little online research. I Googled various topics, such as "clinical significance of t(4;14) heterogeneous subclones in Multiple Myeloma", among many others.  I did find a reference to the fact that there is a significant chance of finding a new clonal gammopathy different from the original clone after a stem cell transplant, which gives rise to "secondary MGUS" which may not have any adverse clinical significance.  Here is a link to a discussion of this topic in the remote chance that anyone might be interested;  Secondary MGUS.  I have a feeling that this is what Dr. Richardson was trying to tell me about yesterday.  In other words, it's no big deal, and it doesn't necessarily mean the MM is coming back any time soon.  OK, that would be nice.

However, I also came across some other articles that gave me a better appreciation of the challenges I may face having the high-risk t(4;14) cytogenics.  I'm learning a little more on the topic of heterogeneous subclones, which is a fancy way of saying that my type of t(4;14) MM is subject to frequent chromosomal changes, giving rise to multiple monoclonal gammopathies, which can coexist and/or change with time.  Typically, one of the gammopathies is dominant (that would be the IgA Kappa in my case), but there could be a secondary indolent clone lurking in the background.  One possibility is that the therapy can successfully suppress the dominant clone, but the indolent clone might be resistant to the therapy.  (I'm sure all of you will be eager to devour a reference article expounding on this topic;  Genetic Abnormalities in Multiple Myeloma.)  Once the dominant clone is under control, the other clone can then become dominant and lead to disease relapse.  Nice!

This give rise to a rather important question.  Is my newly-found IgG Lambda monoclonal gammopathy simply a "secondary MGUS" of minor significance?  Or is it possible that this clone has been waiting all along for the chance to shine and flourish?  I don't know if my medical team has ever noticed or now remembers that Lahey Clinic test result.  Those results were forwarded to DFCI before I started treatment there, but they could have been overlooked or forgotten.

I certainly plan to take up this issue with Dr. Richardson.  If he is unaware of the Lahey pathology report, would that change his opinion about the importance of my latest results?  If so, what would that mean?  I have a feeling that I already know the answer to that, which is to keep doing what I am doing and hit this thing with everything, including the kitchen sink (which I fixed today, by the way, in my copious spare time.)  I still have to fix the toilet in the master bath, but I don't plan to throw that into the mix.

One good result of my research (which I have mentioned in earlier posts) is that recent trial results have confirmed that initial induction therapy with Velcade and Revlimid, followed by post-transplant consolidation therapies including Velcade and Revlimid tend to overcome the negative prognosis usually associated with the t(4;14) translocation.  Hopefully, the MLN9708 in my induction therapy will prove as beneficial as Velcade, and my current VRD consolidation and Rev maintenance should best suit my situation.  At this point, I can't think of anything that I would have done differently before or would plan to do differently now.  Time will tell.

Consolidation Therapy - Cycle 1 Day 1

Today was the reprise of my abortive attempt to begin consolidation therapy two weeks ago.  This time the paperwork was in place so there were no hitches.  Dr. Richardson was only an hour and a half late for the appointment this time, so today seemed to proceed at a rapid clip, relatively speaking.

My blood work came back pretty good today.  My white blood cell count is a little low, but my neutrophils are OK, so that's not a problem.  My bilirubin is a little high (measure of liver function), but nothing to worry about.  (Maybe I shouldn't have had that extra glass of pinot noir last night.)  On the good side, my total protein and albumin are back in the normal range, my anemia (RBC, Hgb, HCT) is improving, and my platelets are fine.

Claudia and Muriel both think I am doing well and I can relax most of the constraints on my diet and activities now.  I should still be a little careful doing yard work that raises a lot of dust and spores (e.g., mowing).  As for diet, I should still avoid eating raw fish, undercooked burgers, and salad bars (where people can slobber over the food and double dip).  Other than that, I think I'm OK to lead a normal life.  I even got permission to eat popcorn! Now I can enjoy going to the movies again.

One of my fellow MM patients just sent me a prepublished version of a paper which is appearing in the latest issue of the journal Blood regarding clinical issues with high-risk MM, including t(4;14).  One of the reasons these cases have poor prognoses and are so hard to treat is that there can be multiple malignant clones that mutate and change in dominance, so that suppressing one of them may allow another to flourish.  I could only understand about every third word in this paper, but I kind of got the gist of the overall concepts.  I took a copy of the paper in to show Dr. Richardson today to get his opinion.  It turns out he hadn't read it, since he hasn't gotten his current issue of Blood yet.  He was appreciative that I brought it to his attention.  (I have to admit I got a real kick out of showing him a technical paper he hadn't read yet.)  I let him keep my copy.

As it turns out, he recently met the author of this paper, whom he respects.  Richardson has also published on this topic, and he is quite aware of these clinical issues with multiple clones.  He told me that is why he thinks this arm of the transplant clinical trial I have been randomly assigned to, which involves RVD consolidation therapy, is the best one for me, because it brings multiple agents to bear to suppress any remnants of the disease, just what may be needed for my high-risk situation.  He didn't say those exact words, but I am paraphrasing what I think he meant.

The ASCO Conference in Chicago has just concluded.  You may have been reading a number of cancer-related stories in the national news over the past few days, most of which have come out of this major conference.  There were several MM sessions which showed some good progress on a number of fronts.  I was particularly interested in the ML9708 trial that for newly-diagnosed patients that I participated in. The results to date look good:  "Of the 46 patients who have completed four or more treatment cycles, 98 percent have achieved at least a partial response to the treatment regimen.   Specifically, 26 percent achieved a complete response, 20 percent achieved a very good partial response, and 52 percent a partial response."  I am still very grateful that I am one of the ones who achieved a complete response.

There continue to be advances in other drug therapies for MM, including carfilzomib (Kyprolis) and pomalidomide, both of which may be nearing FDA approval.  Another area with exciting progress involves the use of monoclonal antibodies, which can specifically seek out the myeloma cells and attack them without affecting normal cells.  One of these, elotuzumab, has shown particular promise and is already in late-stage clinical trials.  Progress is also being made in developing a myeloma vaccine, which is now in a clinical trial.  The good news is that there is a lot of research going on and a lot of trials underway to bring a number of new weapons into the battle against MM.

I remain hopeful and optimistic.

Revlimid as Maintenance Therapy

Recently, I have been in contact with a fellow MM patient who has been following my blog.  Steve has suffered several bouts of cancer in his life, and was diagnosed with MM 5 years ago at the age of 51.  He is very interesting, because he and I have taken very different approaches to managing this disease.  Steve has always opted for conservative rather than aggressive treatments for all his cancers, opting for maximum quality of life up front as a primary goal.  Fortunately, this strategy has worked so far for him.

After his initial MM diagnosis, Steve went through an initial drug therapy which resulted in sCR, and then stopped all treatment for 2 1/2 years until relapse.  After 3 cycles of Rev/Vel/dex, he again went into remission and stopped further treatment until now.  While asymptomatic, his blood count numbers are on the rise and he will have to consider some sort of treatment again soon.

I recently sent Steve the writeup on my stem cell decision making process.  While his instinct is to avoid a stem cell transplant, he agreed that given my circumstances (age, etc.), he probably would have arrived at the same decision.  My treatment plan involves a consolidation phase followed by 3 years (at least) of maintenance with Revlimid.  However, both Steve and his oncologist are skeptical of any long-term maintenance therapy.

One of the more controversial issues in the MM community involves the question of long-term maintenance with Revlimid.  There have been 3 major Phase 3 clinical trials addressing this issue, all 3 of which were published in the May 10, 2012 issue of the New England Journal of Medicine (NEJM).  Steve was kind enough to forward me pdf files of all the articles, and he is interested in my take.  I was somewhat familiar with two of the studies: the French IFM study (Attal), and the CALGB study (McCarthy).  Dr. Richardson was an active participant in the latter.  Both of these studies involve stem cell transplants.  The 3rd study was Italian (Palumbo) and involved older patients not eligible for transplants.

All three of these studies showed dramatic improvements in median progression-free survival (PFS) with long-term Revlimid maintenance versus a placebo.  For the CALGB trial, the PFS was 46 months for the Rev vs. 21 months for the placebo.  These results were so dramatic that all 3 studies were unblinded, and the CALGB patients on placebo were given the option to switch over to Rev (most did).

However, there is a fly in the ointment here.  While the PFS numbers were dramatic, there was no corresponding increase in overall survival (OS) in two of the three studies!  Only the CALGB trial showed a modest improvement in the 3-year OS rate (85% for Rev vs. 77% for placebo).  It may be that longer followup times may yet establish an OS benefit to long-term Rev maintenance, but for now, these results are a bit troubling.

Most clinical trials use PFS as a desired end point, mainly because it takes much longer to establish median overall survival times.  However, many are now questioning the use of PFS as an end point in clinical trials if it doesn't lead to corresponding improvements in OS.

Another issue with Revlimid maintenance is the incidence of second cancers.  I have already blogged on this issue and discussed it with Dr. Richardson.  All the studies showed a somewhat higher incidence of second cancers in the Rev group vs. the placebo group.  In order to quantify this, a post hoc end point of event-free survival (EFS) was introduced, which added cancer events to the PFS.  For the CALGB study, the EFS was 43 mos., only 3 mos. less than the PFS, still a dramatic improvement over the placebo (21 mos.).  Therefore, the magnitude of benefit of Revlimid maintenance clearly seems to outweigh the risk of a second cancer.

The May 10 issue of the NEJM also published an editorial addressing these issues.  In addition to the issues I mentioned above, the editorial also addressed the cost question of long-term Rev maintenance.  At a list price of $450 per 10 mg tablet, the cost vs. benefit is a valid issue.  At what point could Rev maintenance be suspended while still giving a long-term PFS benefit?  While this is an important consideration globally, it doesn't affect me personally for now, since my Revlimid is being paid for by the clinical trial (thank goodness!).

Some of these questions may be answered in future clinical trials.  In the meantime, I am comfortable with the course of treatment I am taking, at least for now.  Even though an OS benefit hasn't been well established for long-term Rev maintenance, I would be very pleased to have an extended remission and not have to go back for relapse treatment any time soon. 

I have responded to Steve with my detailed comments on these articles, and I welcome the dialogue Steve and I have established on these issues.  It is helpful and instructive to listen to those who have chosen to take a different path.  I am always trying to learn more about this infernal disease.  I suspect there will be numerous decision points in my future, so I want to stay on top of all of this as best I can.

I hope this discussion hasn't bored you too much.  If it has, and you still read this all the way to the end, congratulations on your perseverance.

Reschedule

Now that the dust has cleared from our misadventures on Tuesday, everything seems to be back on track, although there will be some delay.  Apparently, I am the first patient to undergo this particular clinical trial arm at DFCI, so some paperwork never got filed in a timely way.  Since there may be a week or so delay due to this oversight, Muriel decided to delay everything by two weeks and start my consolidation therapy on June 4.  I don't think there is any clinical downside for this delay, so it shouldn't be any problem.

Actually, this delay falls in nicely with our travel plans for this summer.  Ironically, our anniversary week is now a bye week, so we could have taken our trip to Bermuda that week after all!  However, we are happy with our decision to visit Niagara Falls instead, so we are looking forward to doing that.  The other good thing is that my niece's wedding in August will now also fall on a bye week, so we won't have to make any special arrangements to accommodate that.   Things seem to have a way of working out!

While at DFCI on Tuesday, I asked about the timing for me to get re-staged with a bone marrow biopsy.  The plan now is to wait until after my consolidation therapy.  That makes sense to me, since by then the results will show the combined effect of my stem cell transplant and consolidation regimen, before I start on long-term maintenance.

In my May 19 post, I offered to email the document summarizing my stem cell decision-making process, which I have already done for a few people.  However, there is now an easier way to access the document, since Pat Killingsworth today published the first of a two-part installment of my story on his blog.  Here is the link:  Pat Killingsworth's blog on my transplant story.  He plans to post the remainder of my story tomorrow.  I'm flattered that Pat chose to feature my decision process on his blog.  I will be very interested in any feedback that it generates, and I hope to learn a lot more from the MM patient community about all of these treatment options. 

Start of Consolidation Therapy? Not!

DFCI is an amazing place, home to some of the world's best cancer researchers, oncologists, nurses, and staff.  Known for its concern for its patients, you'd think this organization must operate with a smooth efficiency that would be envied the world over, right?  Well, think again.  As with most large entities, DFCI is afflicted with the common maladay, Snafu, or, as you all know, Situation Normal, All F***ed Up.  Let me regale you with our experiences yesterday at this Mecca of cancer treatment, this supposed model of effective and efficient care.

It started as soon as we arrived.  After checking in before our scheduled time of 11:00 am, we were told that the blood draw unit was backed up today.  Well, that has certainly happened before.  No big deal.  I only had to wait half an hour for my blood draw and IV port insertion.  However, that process didn't really go too well.  The nurse wanted to work on a vein lower in my forearm today, so she fiddled around for a while sticking it and maneuvering it around trying to get it to work.  I don't know why she didn't use the big vein near my elbow like they usually do.  Last week the nurse said she could shoot that one from across the room.  Anyway, after a lot of painful wiggling around of the needle, she finally got the blood she wanted, but she had go back and refill some of the tubes, which screwed up the whole process, so some of the samples had to retaken later in the day.  But that was just the beginning.

As usual, my appointment with Dr. Richardson for 12:30 came and went without incident.  Gretchen went to the cafeteria to bring a sandwich back to the sitting area so we wouldn't starve while we continued to wait.  We finally met with Dr. Paba Prada and Muriel Gannon around 1:30 or 2:00...I kind of gave up keeping track of time by then.  I wasn't too thrilled with the pathology report I got from my serum protein electrophoresis from last week.  The immunofixation report showed "a faint M-spike that is not apparent on the electropherogram and, therefore, cannot be quantified".  Claudia and Muriel were encouraging and said it didn't mean anything, but after everything I've been through, the last thing I wanted to see was an M-spike, however faint!  Of course, Dr. Richardson was nowhere to be found, so they sent me over to infusion to get my first dose of Velcade, with the plan that he would catch up with me there.

 OK, so by now it's about 3:00, and I get hooked up to get another blood draw and hydration before my push of Velcade.  However, a problem arises.  The Velcade order is rejected by the pharmacy because it came through saying this is day 0, when it is actually day 1.  Paba Prada and Richardson have to resubmit the order for the pharmacy to act on it.  However, neither of them is anywhere to be found.  Physical searches are fruitless.  Pagers go unanswered.  They have both disappeared into Limbo.  Eventually it is determined that they are in consultation with a patient.  My first thought is to envy whoever it is who is able to command this much of Dr. Richardson's time.  I rarely get more than 3 or 4 minutes with him at my appointments.  Then I realize that the patient may have serious issues and needs that time, as I did on my first visit.

My infusion nurse, Heather, is trying her best to get this fixed.  At long last, the order is corrected and sent back to the pharmacy.  Richardson finally shows up, shakes my hand, tells me how good I look, and then, before he rushes out of the room, I ask him about the pathology report.  He says that after a stem cell transplant, there are often lots of little blips in the blood tests as the new stem cells start to take hold, and that this is a normal reading and I shouldn't be concerned about it.  OK, that makes me feel better.  Then off he goes...whoosh!

By now it's after 4:00, and the pharmacy can't say how long it will be until the Velcade is available, so Gretchen and I decide to go over to BWH Floor 6b to deliver a thank you note and gift to the nurses who were so good to me during my stem cell transplant there.   You know, it's frustrating for these nurses.  They spend weeks getting to know patients as they go through the difficult process of a stem cell transplant, and then the patients leave and they never hear from them again.  They very rarely get any closure on the patients they worked so hard on and got to know so well.  It was nice to visit with them.  They were thrilled to see us and were glad to hear that I am doing so well.  Just a little consideration can really go a long way, and these nurses deserve it so much.  I wish more patients would give them the courtesy of a followup, just to say thank you and let them know how they are doing.

Anyway, we get back to the infusion floor about 4:45, just in time to find out that the Velcade cannot be made available today!  Apparently, the sponsor of the clinical trial failed to notify the pharmacy that this dose was needed today, so they can't fulfill it.  Not that they don't have plenty of Velcade available, mind you.  It's just that they can't use what they have to fill this prescription unless the proper paperwork is filled out (probably in triplicate or quaduplicate), and it's too late in the day for anyone to cross the i's and dot the t's.  Nothing left to do now but to go home.  Of course it is now the peak of rush hour.

We decide to have dinner at a local restaurant so we can chill out a little bit and avoid the rush-hour traffic home.  However, because of the weather, the rush hour(s) is (are) extended, so we get the traffic anyway.  C'est la vie.  So ends our eventful day at Dana Farber.

Now the schedule that we have so carefully crafted with Muriel is down the poop chute.  She will call me today to try to reschedule all of this.  I hope it doesn't upset some of the travel plans we have already made, but it is what it is.  Some days are just like that.

 

Sticker Shock

I am used to getting regular bills from DFCI, Brigham and Women's Hospital (BWH), or Blue Cross Blue Shield for various lab tests, procedures, doctor's bills, etc.  Usually, the amounts are fairly small, mostly under $100.  Since the amounts billed to me usually only represent 1 or 2 percent of the total amount involved, I gladly pay them, grateful that the insurance picks up the great bulk of the costs.

Usually, the bills come by snail mail, but today I got an online bill from BWH in the amount of $500.  This seemed a bit steep, so I went online to check out the detailed invoice.  That's when I found out how much a stem cell transplant really costs.  The total charges for my 16 days in the hospital for my ASCT came to $178,662.15!  For those of you who are very astute with math, you have probably already figured that that this comes to over $11,000 per day, or about $465 per hour.  I would suggest that if you don't really need one of these, don't get it!  Geez, even a good lawyer (not that there are many of those) doesn't cost that much.  (Sorry, Terry.)

Nevertheless, my portion of these charges still only amounts to under 0.3% of that total.  Thank goodness!  Again, I will pay it without question, relieved that my portion wasn't much higher.

This causes one to stop and think.  What happens to people who are either under-insured or have no health insurance at all?   Other than throwing themselves onto the largesse of the State, what options do they have?  My advice to them...don't ever get really sick.  I am grateful for my Blue Cross Blue Shield Medicare Advantage Plan.  They have not questioned or denied any of the expensive treatments I have received for this disease from the gitgo.  I have read stories from other MM patients who have had to fight with their insurance companies to cover the costs of their treatments.  Thank you, BCBS!

Not to get into politics, but I think the Massachusetts health care plan (now dubbed RomneyCare) has been a good thing, in that it requires people to have some kind of health care coverage.  I also think that is a good feature of ObamaCare.  For those who feel this requirement is unconstitutional and cherish individual freedom, as in the New Hampshire motto, "Live Free or Die", I would suggest that the freedom not to require health insurance is equivalent to "Live Free and die".  OK, I've just stepped off the soap box.  Enough of that.

As an informational note, I recently compiled a chronology of my decision-making process leading up to my stem cell transplant.  I did this at the request of Pat Killingsworth, who thought it might make an interesting (or not) case study for others who may be facing this same decision.  If you are interested in this, just email me at wfohalloran@gmail.com and I will be glad to send you the Word document (about 5 pages).

ASCO Annual Meeting

The American Society of Clinical Oncologists (ASCO) holds its 2012 annual meeting June 1-5 in Chicago.  This meeting, along with the ASH Annual Meeting in December, is a primary showcase for publishing advances in cancer research, including Multiple Myeloma.  The abstracts for this year's ASCO meeting were posted online yesterday.  Naturally I was curious, so I checked them out.  For anyone interested, the website listing the myeloma related abstracts is:  http://abstract.asco.org/CatAbstView_114_116_AA.html

As expected, there are several papers on the MLN9708 clinical trials.  Unfortunately, the abstracts for this conference were submitted last December, so no new results are available for my MLN9708 clinical trial beyond what I reported on in my post of Dec. 14, 2011.  Dr. Richardson will be presenting updated results for this trial at the meeting, so I will report on them after his presentation.

Looking at the other MM presentations, I was impressed with some of the excellent results coming from some of the other clinical trials, particularly, the carfilzomib trials.  This proteasome inhibitor is a potential replacement for Velcade, without the peripheral neuropathy side effects of Velcade.  The clinical results so far compare favorably to Velcade, and the FDA seems poised to approve this drug soon.  Onyx Pharmaceuticals has already chosen the trade name Kyprolis for carfilzomib (only slightly more pronounceable), anticipating an early approval from the FDA.

Good results will also be presented for pomalidomide, a potential replacement for Revlimid that also is on a good track for FDA approval sometime in the foreseeable future.  Clinical results for other promising new MM therapies, such as elotuzomab, will be presented as well.  I plan to track this conference and share any new breakthrough information that comes from these presentations.  Stay tuned.


Every day, I have to take a formidable array of prescription drugs and supplements to keep this disease, treatment side effects, and potential complications under control.  Here is a picture of the pills I laid out on the counter this morning, including my normal blood pressure and cholesterol meds.  I actually have several more supplements that I can take, but these are already enough to choke a horse.  Hey, as long as they keep working, I have no problem with this.

I was thinking of having a contest.  Whoever can correctly identify all these pills would get a free hard-bound copy of the Merck Index, along with an all-expense-paid trip from anywhere in the Boston area to the world-renowned Dana Farber Cancer Institute, including free parking and lunch at the cafeteria. I could show the winner around, since I know the place so well.