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Tuesday, August 30, 2011

Dr. Richardson visit

Today is Day 1 of Cycle 2 of my clinical trial.  This is the first chance we've had to meet with Dr. Richardson since July.  Despite the fact that they don't have much data yet about how the medications are affecting the course of the Multiple Myeloma, it was a very good day.  First of all, I am tolerating the dosages well without any noticeable side effects or excessive suppression of my immune system.  Second, there is a palpable sense of enthusiasm for this protocol among the medical team, which translates to a feeling of optimism all around.  

The attached picture shows my ace medical team together:  nurse Kathy Colson, who manages this clinical trial (either fixing her hair or summoning spirits), Richardson, and Dr. Claudia Paba-Prada, Richardson's Research Fellow (although it's hard for me to think of her as a fellow).  Richardson is in the middle.

I have already expressed how I feel that the stars must have been aligned just so for me to find the right doctor at the right clinic with the right protocol at the right time.  Little did we know until today just how aligned they have been.  On my first visit, when I was diagnosed with MM, I was immediately offered a chance to participate in this Phase I clinical trial.  As it turns out, there was another patient at DFCI with the initials W.O. who was slated to join this trial, but who backed out at the last minute.  Normally, the next opportunity for a patient to participate would then go to one of the other participating institutions.  However, since DFCI had a slot open for someone with the initials W.O., they were able to keep the slot and insert me instead.  Somebody pinch me!  As I said, today was a good day.

We also found out today that I was the last patient everyone has been waiting for to determine whether Phase I has been successful.  My blood tests today would determine whether they have found the proper dosing levels so that they can proceed to Phase II of the clinical trial and recruit hundreds of additional MM patients.  Because my tests came back great, they have already started the process of immediately transitioning to this next phase.  We are very grateful.

Monday, August 22, 2011

Back to Dana Farber

Today we left at 6:00 am for our 7:45 appointment at DFCI. This marked the tenth and last visit during Cycle 1 of my treatment protocol. I received the last dose of the steroid dex for the month (I can't wait to see what other projects I can finish this week), and I'm off all the meds now until next Tuesday, which begins Cycle 2.

We were somewhat alarmed at my blood test results this morning. Most of my blood cell counts (WBC, RBC, Hemoglobin, Hematocrit, Neutrophils) were distinctly lower than last week, while my monocytes were way higher, all out of normal range (gulp). Fortunately, we then met with Kathy Colson, the RN who heads up this Clinical Trial, and she said everything was fine (whew). She said these results were expected as part of the treatment, which is why they stop giving the MLN and Revlimid for the latter part of each cycle, allowing the body to recover before the next cycle. I guess that makes sense. I suppose if the drugs are lambasting the shit out of the bad blood cells, they probably take out some of good ones as well. Using Dr. Richardson's military metaphor, I guess we can call that collateral damage.

We also learned more today about how this Phase I Clinical Trial is proceeding. Phase I trials involve a small number of patients (normally a dozen or so) to establish the safety of the experimental drug. In Phase I, dose escalation studies are performed to determine the Maximum Tolerated Dose (MTD) of the drug that doesn't cause toxic side effects. This MLN9708 clinical trial now includes about 13 patients nationwide. Before I joined last month, they had just tentatively established this MTD level, based on the previous patients' responses. I have been taking this provisional MTD level so far this month without any noticeable side effects. Actually, I'm feeling great! To tell the truth, if I didn't know about this diagnosis, I wouldn't think that there is anything wrong with me.

As it turns out, I am part of a sample group of three trial patients across the country who are testing this provisional MTD dose level during this month. If all three of us show no bad side effects (count me in), they will consider Phase I complete and immediately transition this Clinical Trial into Phase II, where they may extend this treatment protocol to many hundreds of people. I can't tell you how fortunate I feel to have gotten in on the ground floor of this trial. It couldn't have come at a more propitious time for me. I am one lucky duck!

Kathy confirmed that the three other trial participants at DFCI are continuing to respond very well to this protocol. She is extremely enthusiastic about how this is going so far. Next week, we meet with Dr. Richardson. I don't know how much information he will have by then about my response to date, but we're keeping our fingers crossed.

Tuesday, August 16, 2011

Monday at Dana Farber

Yesterday was my scheduled 10-hour day at DFCI. As a preamble, I was handed a pleasant surprise Saturday night when G. and I met up with Jeff and Christine to attend a concert at Boarding House Park in Lowell. As I was gently pushed into Jeff's apartment, there stood Brian! He had come up from New Jersey so that he could come to DFCI with me on Monday. Everyone had conspired to keep me in the dark (easy to do), and the surprise was complete. Pam and Logan were visiting her sister, Michelle, in Boston, and on Sunday we all convened at our place for a cookout. A delightful time was had by all.

Brian and I set out at 7:00 to fight the am rush-hour traffic into Boston for my 8:45 appointment. The day started out with screening blood tests to make sure I meet the criteria for continuing the trial protocol. As I understand it, my white blood cell, albumin, and neutrophil counts have to stay within certain parameters. So far, so good (whew!). After a 3 hour wait, I then got my 3rd dose of MLN9708 and dexamethasone, along with the Revlimid. Then began a 7-hour sequence of scheduled blood draws to track the chemicals in my system.

Gretchen, Pam, and Logan drove in around noontime to join us. During my 2-hour break, we all went to Petit Robert in Kenmore Square for lunch. It did not disappoint...3 types of pate, ecargot, coq au vin, short ribs bourguignonne, crispy blue fish, salad, and frites. To die for! Even Logan gave it the stamp of approval. After lunch, Brian, Pam, and Logan headed back to NJ, while Gretchen and I went back to finish the blood draws. We then fought the pm rush-hour traffic back home, arriving after 8:00 pm. It was a long day, but having my family there was special and made the time fly.

After my experience last week, I was waiting for the steroid to kick in, but for a while, nothing happened. Around 10:00 I hit the hay and went right sleep. About 3:00, however, the dex hit and I was suddenly wide awake. I did not jump out of bed and rush outside to shingle the roof and replant my lawn, but I did accomplish all of this in my mind, and much more. I mentally painted the ceiling and walls in the back hall, painted the discolored areas of the family room ceiling, patched and painted the wall in my office, re-grouted the loose bricks on the front stoop, painted the trim on the front decks, touched up the house trim, sealed the driveway, re-stained the back deck, cut brush on the river bank, trimmed the tree branches by the dock, trimmed the brush by the driveway, and mowed the lawn. If wishes could be deeds, this place would be immaculate. One of these days, I'll get there. I ran out of mental projects to do, so I finally got up around 7:00.

Wednesday, August 10, 2011

The Dana Farber Community

The thing we noted immediately upon our first arrival at Dana Farber Cancer Institute was the remarkable staff. From the parking valet on up to Dr. Richardson himself, the positive attitude of everyone shines through. They all conduct themselves professionally, with cheerfulness, enthusiasm, cooperativeness, and complete attention to the patient's needs. They all make an effort to make the patients feel more comfortable.

We were quite impressed with Dr. Richardson. While he is not always on time for his appointments (that's a bit of an understatement), once he is with you, you have his complete, undivided attention. He is personable, looks you straight in the eye when talking, and makes an effort to get to know you personally. Of course, he is also as smart as hell. It was enlightening to see how he interacted with the rest of his team: his Fellow, Dr. Claudia Paba Prada, and the nursing staff. He is not pompous, and there were no inflated egos in the room. Everyone worked together in a collegial way to address the problem at hand (that would be me).

The rest of my visits to DFCI have been for taking medicine and having blood drawn. The nursing staff exudes the same aura of professionalism, warmth, and caring that we saw with Richardson and his staff. This attitude helps make my frequent visits more bearable.

All is not rosy however. The hardest part of being there is seeing the patients and their families, all of whom are dealing with difficult circumstances. And it's even more poignant when the patients are young.

Last week, while waiting for my appointment, I saw a nurse earnestly discussing some paperwork with a relatively young man. I overheard her mention the words "clinical trial" and "Dr. Richardson". I immediately thought that perhaps he was a recently-diagnosed MM patient and was about to enter the protocol I had just begun.

When the nurse left, I went over and introduced myself. His name is John. I asked if he was a new patient of Dr. Richardson. He said no, that he has been his patient for the last two years. He contracted MM at the age of 47! John added that he has been attending an MM support group, and while everyone else in the support group seemed to be responding well to their treatments, his treatment hasn't worked for him. Dr. Richardson doesn't understand why and is enrolling him in a clinical trial to try something new. I told him how sorry I was to hear that.

When I told him that I was recently-diagnosed and just starting a clinical trial, John turned to me and said, "I will pray for you, Bill". I didn't know what to say and came close to tears. Here was a man who had prematurely developed this dread disease while still in the prime of his life. The cast on his arm likely bespoke the havoc that MM had wreaked on his bones. He was running out of time and options, and HE was going to pray for ME? As one who is not generally disposed to prayer, I wasn't planning to pray for John. But then I did. I'll be thinking about him a lot.

Tuesday, August 9, 2011

Second Dosing Visit

Yesterday, we awoke at oh-dark-thirty to make our 7:00 am appointment at Dana Farber. They started with more blood tests, one of which was a 168 hour test to check for residual levels of last week's first drug dose. Then I got my second dose of the cocktail: MLN9078, lenalidomide, and dexamethasone. It didn't take too long--we were out of there by 9:30.

When we got home, I took a short nap, but after that, the steroid kicked in. I didn't have the irresistible urge to rush outside to install a new roof and replant my entire lawn at the same time, as one of the nurses had suggested, but I did get very hungry and ate like a pig. I also couldn't go to sleep last night. I laid awake in bed until about 6:00 this morning. I'm still on a roid high. If this post ends suddenly in mid sentence, it's probably because I suddenly crashed and my head pressed the "Post" button as it hit the keyboard. I doubt that this will hap

Friday, August 5, 2011

Pan-Mass Challenge

Today I went into Dana Farber for a blood draw, and I took this picture from Jimmy Fund Way.  As you may know, the Jimmy Fund has provided charitable support for the Dana Farber Cancer Institute for more than 60 years.  One of the major sources of contributions to the Jimmy Fund is the Pan-Mass Challenge, the nation's original fund-raising bike-a-thon.  Since 1980, the Pan-Mass Challenge has raised more than $300 million for cancer research at DFCI and is now its single largest contributor.

Tomorrow, my good friend, Dave Poulin, will be participating in his 4th Pan-Mass Challenge, riding from Sturbridge to Provincetown over 2 days.  He rides in honor of his mother, who died of cancer.  I have been supporting Dave in his rides, and for the past 2 years, he has also been riding in memory of my brother, Michael, who finally succumbed to cancer after a long and courageous fight.

On the eve of Dave's ride, I could not help but stand at this bridge and note the irony that I now find myself on the other side of this wonderful fund-raising venture.  I invite you to visit Dave's PMC website :

My other very good friend, Bobby Mandolese, also rode in the PMC a few years ago, and he now rides in the annual Tour-de-Cure to raise money for diabetes.   I think we all owe Dave and Bobby, and others like them, a debt of gratitude for the time and energy they have put into raising money for these worthy causes.  I know that I, for one, am very grateful.  Thank you, Dave.  Thank you, Bobby.

Thursday, August 4, 2011

Update to first post

I realize that in my first post I may have given the impression that I was unhappy with my hematologist at Lahey, Dr. Rabinowitz.  That is not the case.  I simply wanted to get access to Dana Farber, which is well known world wide for providing the best in cancer care.  Dr. Rabinowitz and Dr. Richardson know each other well and have a high degree of mutual respect.  In fact, Dr. Richardson indicated that he plans to delegate some of my followup care back to Dr. Rabinowitz so that I might not have to come all the way into Boston every time.

I just wanted to clarify this.