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.