Please see the attached update as to what’s been transpiring since I was first diagnosed with Multiple Myeloma almost a year ago. As you will see, much has happened, and I am very hopeful for the future.
I did have initial reservations about sending out a note like this, as it would appear that I am looking for personal attention and/or sympathy. Being in business all these years, out of necessity for success one does develop a healthy sense of narcissism, but trust me in this case my note to you is not really intended to be “about me”. I really don’t want to draw attention to myself and my personal situation, but if it helps further the overall goal of raising the awareness of Multiple Myeloma and ultimately finding a cure for this terrible disease, I am “all in”. I hope you all understand this is my driving motivation for writing to you.
First and foremost, the attached is an attempt by me to explain what a patient with Multiple Myeloma (MM) experiences, although each patient is different and the course of treatment varies widely. Related to this reasoning, the first intent of the attached note is to help raise the level of awareness about this type cancer and what a patient in treatment experiences. It must be noted that many others with MM have it far worse than me, so I truly consider myself a lucky guy with a bad luck illness. I could be a lot worse off today, and my hope is that before that time comes this disease is history.
The second reason for this note is to update you with respect to our upcoming fundraiser on October 28, 2016 for Multiple Myeloma research. My hope is that my note will motivate some to either attend or donate to this event or ideally do both!
Therefore, I would like to ask that you take a moment to read the about info for this Facebook page, although I recognize it is a bit lengthy. My hope is that it tells you a little bit about the journey I’m on and shares with you the hope and vision I have for the eradication of this disease along with the commitment I have made to help find a cure for Multiple Myeloma. I hope you will join me in this fight!
Thank you for your continued prayers and support. They mean more than words can ever say….
“YOU HAVE CANCER”
The above are but three simple words. However, when they are placed into the sequence as noted, they become three very horrific words. I know, because last August the doctors at the Dana Farber Cancer Institute in Boston spoke those words to me.
Unfortunately, those words were then followed by the term “Multiple Myeloma”, something that I had never heard of before. I quickly learned that Multiple Myeloma is very rare type of cancer that actually begins in one’s bone marrow. Only about 30,000 people in the United States contract this type of cancer annually so, in the big picture of the incidence of cancers being identified every year, this is relatively small. There is no known cause for this disease and unfortunately, at this time, there is no known cure as well.
To better understand this disease in very simple terms it is a blood related cancer that starts in the body’s plasma cells. Plasma cells are a type of white blood cells in the bone marrow. With this condition, a group of the plasma cells becomes cancerous and multiplies releasing too much protein into the bones and blood.
Years ago, I remember playing the game Pac-Man. This cancer is almost like Pac-Man, but in reverse. In the game of Pac-Man, we controlled the “good guy” and directed him to gobble up “the bad guys”. With this disease, the exact opposite is true. Multiple Myeloma controls the “bad guys” and they are gobbling up the healthy “good guys” (cells). As the plasma cells become contaminated, they begin to spread from the bone marrow throughout the body causing serious complications, including bone lesions/fractures, renal failure, anemia and high calcium counts. All of these end up creating further complications for the Multiple Myeloma patient until ultimately the body can no longer survive.
After receiving the news from the oncologist at Dana Farber, I took some time to collect my thoughts
and to determine exactly what had been indicated and to give consideration to the options I had to
attack this invasive disease. After much thought, and in consultation with family and friends, we (my
family is involved in all of these decisions so it is a team effort) decided that I would enter into a Phase II
Clinical Trial being conducted by Dr. Irene Ghobrial at the Dana Farber Cancer Institute in Boston. While
the intent of any Trial is to ultimately find a cure, at this stage the Trial’s primary intent is to ideally slow
and perhaps even stop, the disease progression. At the time of my diagnosis, 40% of my plasma cells
were cancerous. However, other symptoms and more complicated advanced stages of the disease were
not present at the time of diagnosis, and thankfully they are being held at bay as a result of this Trial.
Beginning in October of last year, I entered into the Clinical Trial which consists of 28 day “Cycles” for a
period of up to two years.
Not all participants will continue for the entire two year period due to medical and/or personal reasons. On days 1-21 of the Initial Cycle, I took an oral dose of Chemotherapy at home (Lenalidomide/Revlimid). For the first three months of treatment, I went to Boston each Friday and spent the better part of the day having lab work, meeting with Dr. Ghobrial and her Team, and then having an infusion of a new generation of Multiple Myeloma cancer fighting immunotherapy drugs called Elotuzumab, along with other medications, including a steroid called Dexamethasone. Additional drugs were also provided during the infusion process, including a bisphosphonate to help keep my
bones from deteriorating from this disease. Following the Third Cycle of the Trial, the trips into Boston
became bi-weekly, but the oral chemotherapy at home remained on the 21 consecutive day cycle.
In late May of this year, I completed my Eighth Cycle and at that time Dr. Ghobrial and her Team
recommended that I take a “break” from the regimen of the Clinical Trial and the administration of all of
the various medications that I had been receiving.
During the first eight months, there certainly were a number of challenges including, but not limited to, low blood counts, infections, rashes related to the medicine that I was receiving, as well as a hospital stay resulting from a heart issue which was a by-product of the chemotherapy creating a G.I. problem which ultimately impacted the electrolytes in my heart. However, compared to others, I’ve had it pretty good! Please note that this summary I am
sending you is not a message of “doom and gloom”, but one of hope and promise for the future. This is
my sincere belief.
Following the first Eight Cycles of treatment, Dr. Ghobrial and her Team also recommended that it would
be appropriate for me to move forward with a Stem Cell (bone marrow) Transplant. This is considered a
standard course of treatment in the battle against Multiple Myeloma, as it helps extend the time one
has to continue to fight this terrible disease.
So, after a few weeks of being “weaned” off of the various medications provided to me over the course of the previous Eight Cycles, I was prepped for the first step of the transplant process, a Stem Cell Harvest which actually began on June 20th. The Stem Cell Harvest itself is not very painful, but it is something that I wouldn’t recommend anyone go through just for fun! It included injections of drugs to help spur the growth of my decreased white cell count (resulting in a trip to the Emergency Room thinking I was having a heart attack due to the stem cells moving around in my sternum!). I also received an additional series of shots which were intended to help bring my stem cells outside of their “comfort zone” so they could be harvested more easily. In all, the shots and the stem cell harvest process entailed an 8 day process, with 5 days of my (and family members) being in Boston at the Kraft Family Blood Donor Center which is located at Dana Farber but actually run by the Brigham and Women’s’ Hospital. Although an outpatient procedure, the first day entailed having an open catheter placed into the left side of my neck down to a main artery near the heart so that blood could be extracted and then recirculated after it had been filtered with stem cells extracted through the apheresis machine. The goal for the week was to harvest 8 Million cells but, as luck would have it, the cells were as stubborn as I am (I guess it’s an Irish thing) and I was only able to obtain 3.6 Million of the targeted 8 Million cells. Although disappointed, the doctors told me I could go back and perhaps do this again, and the 3.6 Million stem cells collected have now been frozen for a transplant which will inevitably happen in the future.
Last week, I began my Ninth Cycle, and I’m back into the routine of 21 days on/7 days off of the Revlimid, along with the infusions of Elotuzumab, Dexamethasone, the bisphosphonate, as well as other medications.
It’s also interesting to note that during this process I have lost a considerable amount of weight which is actually a very positive thing from an overall health perspective! I believe there is always a silver lining in every gray cloud.
Much has happened throughout this process that has caused me to think a lot about life (and death). I think that this “challenge” has, in a way, made me a far better person. I see things much differently now than I had in the past, and I don’t take anything for granted. Each day is a blessing, and I’m extremely lucky to have the love and support of so many family members and outstanding friends. My father-in-law used to say that “I married up”. Although I always knew that to be true, Pam has been my true hero and my “rock”. She has been at my side each and every step of the way as my advocate, caretaker and best friend. The same should be said for my wonderful children as well. This is not a fight I could take on alone.
It is because of what Pam and I (and our family) have witnessed at Dana Farber that we have decided to “give back” to the outstanding caregivers and physicians/scientists to help find that elusive cure for Multiple Myeloma. Dr. Ghobrial and her colleagues at the Dana Farber Cancer Institute, as well as those at other Centers of Excellence in the United States (and throughout the world) are working most diligently in an effort to find a cure for this rare disease. With the advent of the new immunotherapy class of drugs in tandem with more traditional type drugs and therapies such as the stem cell transplant combined along with other recent advances in terms of understanding how genes play a role in combating cancer, there is great hope for the future.
However, in order to solve this “riddle” and find a cure for this cancer, with the hope that it will unlock the cure for other blood related type cancers (and with the hope that will lead to other cancers that are not blood related down the road) there must be continued and extensive research. Unfortunately, and as noted above, given how relatively small and rare Multiple Myeloma is compared to some of the more prevalent forms of cancer, the “squeaky wheel gets the grease” theory comes into play! Certainly, those dedicated to working on finding the cure for Multiple Myeloma do not receive substantial research grant monies available in relation to some of the more prevalent forms of cancer.
That is where we are trying to make a difference. On October 28, 2016, we will be hosting our first event to both recognize the great work of Dr. Irene Ghobrial and her colleagues at the Dana Farber Cancer Institute, as well as to help raise funds to continue the necessary research. As importantly, we hope to raise the awareness of this disease which oftentimes goes undetected until someone is in latter stages of the disease and is limited in treatment options. In that regard, I was somewhat fortunate, as I was diagnosed early following a lingering respiratory disease with having some “funny numbers” in my blood.
More information about our upcoming event will be made available shortly. However, I want to ask that everyone please consider attending and/or making a donation for this special evening. We will be soliciting donations by Presenting Sponsors, as well as other levels of Sponsorship participation. We will also be looking for auction items to be part of the evening’s program. We are hoping to finalize the events for the evening with the next few weeks, and as soon as we do I will keep you posted.
Also, I really believe that I truly lucked out with one of the greatest physician scientists doing research in this field. Dr. Irene Ghobrial is recognized as a leader not only nationally, but internationally as well. She has become my “go to” person when it comes to how to fight this disease the best way possible. She is a tireless worker, and has been by my side throughout this entire process. She also maintains an unbelievable workload participating in National and International forums, as well as doing her own research and teaching at Harvard Medical School.
I really feel that as bad as it was to receive this diagnosis, I was most fortunate to become connected with Dr. Ghobrial. To learn more about Dr. Ghobrial, please google her name and Dana Farber Cancer Institute. I believe you will be as impressed with this remarkable person, physician and scientist as I am!
In closing, and as I have stated to everyone despite this illness, I am a very lucky and blessed person. I have the greatest family anyone could ever ask for and my extensive support system of Friends, Physicians, Nurses, Support Staff and Colleagues is absolutely the world’s BEST!
For those of you that know me well, I think you will agree that I don’t easily back away from a “fight” or a challenge. I also don’t like to lose, so being prudent I always pick my fights and challenges
carefully. While I didn’t pick this challenge, I’m convinced God gave it to me as an opportunity for me to use my talents to move the research process forward by helping raise awareness and funds. My promise to all is to fight as hard and for as long as necessary with the goal of being the “Poster Boy” for the cure. I’ve made that my focus and I will do all that is necessary in this regard. I’ve also made that promise to Dr. Ghobrial!
With your continued Love and Support, WE will beat this and WE all will make a difference!
Please save October 28th on your calendar as WE come together to celebrate the works of Dr. Ghobrial, raise critical funds for continued research and help raise awareness about Multiple Myeloma and how our generation will beat this, and other types of deadly cancer.
Thanks to all for your continued prayers and support. Without them, I wouldn’t have a chance!
Best Personal Regards,