New Clinic Focuses on Why Some Conditions Become Cancer While Others Don’t

New Clinic Focuses on Why Some Conditions Become Cancer While Others Don’t

Insight: News and Information from Dana-Farber

"Thousands of people learn each year – usually after a routine blood test – that they have a condition that may develop into a blood cancer such as leukemia, lymphoma or multiple myeloma. The news is often followed by an equally surprising addendum: the condition won’t be treated until it becomes a full-fledged cancer.

Robert Soiffer, MD, chief of the Division of Hematologic Malignancies at DF/BWCC and co-principal investigator at the BCPC

The lack of treatments for such “precursor conditions” places patients in an awkward limbo: seemingly healthy but waiting for their disease to progress to the point where it’s treatable. Scientists have puzzled over why some people with these conditions go on to develop cancer quickly while others never do, and whether treatment could arrest the disease at the precursor stage.

Advances in genomic technology have given researchers the tools to study the switch from precursor condition to cancer at unprecedented depth. By understanding the fundamental changes that occur in cells’ DNA – and when those changes occur – investigators hope to break the process down to its key components and, ultimately, develop targeted therapies capable of bringing the process to a halt.

To lead that effort at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC), researchers have joined to create the Blood Cancer Prevention of Progression Clinic (BCPC), the first such facility in the United States. Comprised of experts in a variety of hematological (blood) disorders, the clinic has begun collecting tissue samples from patients with precursor conditions and from those with advanced disease. The samples will be analyzed to tease out genomic differences between early- and later-stage disorders, and identify which ones lead the march toward cancer.

“In cancer, we’re always looking to diagnose malignancies in their earliest stages, when they often can be treated successfully,” says Robert Soiffer, MD, chief of the Division of Hematologic Malignancies at DF/BWCC and co-principal investigator at the BCPC. “In many hematologic malignancies and disorders, precursor conditions provide this kind of advance notice. The challenge now is to use this knowledge to our advantage – to learn how to ‘read’ the tissue of patients with precursor conditions to determine which cases are likely to advance and which can benefit from early treatment.”

Precursor conditions take a variety of forms and go by a variety of names.  Early myelodysplastic syndrome, a disease in which the bone marrow fails to make enough healthy blood cells, is often a precursor of acute myeloid leukemia (AML). Myeloproliferative neoplasms, growths that cause the bone marrow to produce too many blood cells, can also lead to AML. Smoldering multiple myeloma, which occurs when abnormal plasma cells arise in the bone marrow, is often a predecessor of multiple myeloma, a bone marrow cancer.

Irene Ghobrial, MD, medical oncologist in the DF/BWCC Jerome Lipper Multiple Myeloma Center, director of the Michele & Stephen Kirsch Laboratory, and co-principal investigator at Dana-Farber’s BCPC

Beyond their common identity as heralds of cancer, precursor conditions differ in how likely they are to progress to cancer, how quickly they will do so, and how they behave from one patient to another. Smoldering myeloma, for example, has a 50 percent chance of progressing to myeloma in two to three years, whereas a condition known as monoclonal gammopathy of undetermined significance has only a one percent chance, annually, of advancing to a cancer such as myeloma, lymphoma, orWaldenstrom’s Macroglobulinemia, says BCPC co-principal investigator Irene Ghobrial, MD, medical oncologist in the DF/BWCC Jerome Lipper Multiple Myeloma Center and director of the Michele & Stephen Kirsch Laboratory at Dana-Farber. She and Soiffer are joined by David Steensma, MD, and Benjamin Ebert, MD, PhD, both of the DF/BWCC Adult Leukemia Program, as the new clinic’s co-principal investigators.

“At this point, we don’t have a reliable way of determining which patients’ conditions are likely to progress and which are likely to remain stable,” Ghobrial remarks. “We’re hoping that research at the BCPC will enable us to better determine who is at greatest risk of progression and are the best candidates for treatment.”

3 Blissful Years

J and I celebrated our third wedding anniversary this past week.

Awwww, I know. Huzzah for us!

Coincidentally, I had to reschedule my 3 month labs and follow-up appointment with Dr. R due to conflicts, and it happened to fall right around our anniversary. I decided since we had plans to be in and around Boston for the day to celebrate our anniversary, it would be logistically logical to schedule my labs and 24 hour urine drop off sometime during that day. So, our Anniversary Day schedule was as follows: 11:30 brunch, 2:00 blood work and 24 hour urine drop off, time around Boston and then a nice dinner at Top of the Hub to watch the sunset.

Best laid plans right? This plan all sounded well and jolly but then I realized...from 11:30-2:00 is quite a bit of time! We'd be carting around the jugs between the time when we left our house, arrived at brunch, ate brunch, and then went on to Dana-Farber.

Our conversation during brunch went something like this, as I started to visualize what might be happening in our hot car:

Do you think the jugs are doing okay in the car?
Yes.
Do you think there is enough ice packs in the cooler?
Yes.
Do you think the urine is cold enough?
Yes.
Do you think we need to bring the jugs in here?
NO!

Nothing says romance like discussing jugs of pee over brunch, eh?

Luckily, the jugs were fine. Nice and chilled. And, on a side note, it's recently come to my attention that not all labs require 24 hour urines to be cold. MD Anderson's lab for example: no refrigeration necessary. Wow. Well, that must be nice!

Overall, a very nice day to celebrate. Blood work, jug drop off and all.

A little overcast, but we'll take it. :)

When J and I got married, instead of giving out traditional wedding favors we decided that we wanted to make a donation to something close to our hearts in honor of our wedding guests. We decided that we would donate to Dana-Farber not really because I was a patient there, but because we know many friends and family who have been patients there. We were married in 2011, almost 2 years into my initial "no big deal" MGUS diagnosis. Little did we know how much time we would be spending there during our first few years of our marriage since I was reclassified to SMM before our first wedding anniversary. We've continued to make a donation on our anniversary every year since our wedding in 2011.

Wedding Favor <3

That being said, because we are somewhat recurrent "donors" we receive a Dana-Farber magazine called Impact. In the summer edition of Impact there is an article called, Leukemia & Lymphoma Society grants delve deeper into biology of blood cancers, broaden access to clinical trials. This part of the article was really interesting to me:

New funding from the Leukemia & Lymphoma Society 

(LLS), a longtime supporter of Dana-Farber, will allow 

investigators to make inroads into the biology of blood 

cancers and move research findings from the laboratory to 

the clinic to benefit patients around the world. LLS recently 

awarded eight grants to Dana-Farber researchers, totaling 

more than $8.5 million.

Irene Ghobrial, MD, received a five-year Specialized 

Center of Research (SCOR) grant to identify the precursor 

stages of blood cancers and attempt to delay or thwart their 

progression to malignancy. She and her colleagues will 

study how blood cancers evolve over time and how disease 

progression occurs during the transformation from precursor 

states to full-blown cancer. In addition, physicians will see 

patients in the early stages of disease, including acute myeloid 

leukemia (AML), myelodysplastic syndromes (MDS), and 

multiple myeloma (MM), in a new Hematologic Malignancy 

Precursor Clinic.

“Understanding the clonal evolution of certain 

hematological malignancies from early- to late-stage 

disease will pave the way for defining new treatments for 

early-stage blood disorders and provide further insight into 

the treatment of AML and MM,” said LLS Chief Scientific 

Officer Lee Greenberger, PhD.

Sounds like good research to me!

Integrative Therapies

"I wouldn't give up the traditional treatment for anything, but the alternative treatments I think work with my head as well as my body and that’s an awfully important part of getting well and staying well." 


Since I am on my mindfulness and holistic living kick, I thought I'd share some information about The Leonard P. Zakim Center for Integrative Therapies. The video above highlights some of the key integrative therapies that are used at that center at Dana-Farber.

I think that quote from the video sums up how I feel about using any integrative therapy. I think being in the "early" stage of myeloma as either an MGUS or SMM patient, it's important if at all possible to begin using these types of strategies, as a way to reduce stress as well as to prepare for any treatment that may be in the future.

Here is some more  information about myeloma patient Lenny Zakim, named for the Zakim Bridge in Boston as well as the Integrative Therapy Center at Dana-Farber. He passed away in 1999 and was only 46 years old.

The Leonard P. Zakim Center for Integrative Therapies

"The Zakim Center was the dream of its namesake, Lenny Zakim, who as a Dana-Farber patient found comfort and renewal by combining acupuncture, massage, Reiki, and other integrative therapies with his chemotherapy and radiation. Throughout his five-year treatment for multiple myeloma, Zakim worked tirelessly to make integrative therapies available and affordable to all Dana-Farber patients.

Employing the same passion he displayed as an attorney, civil rights activist, and New England Region director of the Anti-Defamation League, he worked with doctors, administrators, and other patient care advocates to make his goal a reality. Just before dying at age 46 in 1999, Zakim was able to announce the establishment of the Zakim Center, which opened at Dana-Farber the next year."

Lenny's Story: Cancer and the Quality of Life

The Leonard P. Zakim Bunker Hill Memorial Bridge

Slow Improvement

The nerves affected from my brachial neuritis (which was "maybe" the result of a bad, bad, bad flu shot placement) -  the axially and suprascapular nerves, which innervate the deltoid and infra/supraspinatus muscles - have improved to almost normal. Yay!

I was very happy to hear this after I had a repeat EMG back in April. I went back to my doctor and he thought because my affected brachial plexus nerves were almost back to normal, I needed more "aggressive" physical therapy in order to strengthen my muscles and stabilize my shoulder. This aggressive PT has consisted of a lot of massage, a lot of crawling, and a lot of strengthening exercises with stretchy bands. My new physical therapist has been very helpful- she seems to understand what's going on within my shoulder much more than my previous therapists, and has given me a lot of exercises that are within a pain free range, as well as massage and stretching techniques to help reduce pain.

Crawling around... noticing so much cat hair...

When I went back to my doctor after being with this new physical therapist for about seven weeks, he felt it necessary to order some imaging to determine if the pain and clicking I am still experiencing is more than just impingement and instability.  My new physical therapist had actually suspected a labral tear upon my initial evaluation. A labral tear would be unusual because I have not had a traumatic injury to my shoulder (unless you count the placement of the shot!). I had an MRI in November which showed a contusion on my humeral head, bursitis, tendinitis and fluid. However, the study was not with contrast, which is necessary to view any issues with the labrum.

That being said, I had an MR arthrogram with intra-articular contrast and MRI yesterday at New England Baptist Hospital. I was very apprehensive about having this test for a couple of reasons. The first reason being that intra-articular means the contrast is injected directly into the joint under the surveillance of a special x-ray machine called a fluoroscopy. I am very weary of having anything injected into my shoulder since last September. :/ I have also read that in some individuals, imaging contrast has been traced as the preciptating factor prior to the onset of a brachial neuritis episode. AND, as I've written about previously, there are studies that have shown that gadolinium may cause myeloma cells to proliferate. Yikes.

Never again!

That being said, I contacted my neurologist who said, "Recurrences are unusual and not regional. So work specifically on the shoulder does not carry a higher risk than injections somewhere else." I also contacted Dr. R who just told me to ensure hydration and make sure the radiology team knew I was a myeloma patient.

So, the test yesterday went fine. The radiologist who performed the MR arthrogram was great. He listened to my whole shoulder saga and was very reassuring that he would take it slow and be careful, and that he's performed more than 10,000 arthrograms. He used  "fluoroscopy" which is a special type of x-ray to view my shoulder and to ensure where the contrast is going. To be honest, when he was prepping my shoulder area he said to look away so I didn't inhale the fumes and I never looked back except to briefly see the screen. The procedure was a few lidocaine injections (short stings...nothing like the super bee sting bone marrow biopsy lidocaine injections) and then they injected the contrast. It really didn't hurt at all. I was shocked when he said he was finished.

After the arthrogram, I had to go to the MRI department for the actual MRI. The hilarious part was they wouldn't let me walk there by myself. At New England Baptist radiology is at a lower level and MRI is above and across to the opposite side of the hospital. So I had to be pushed in a wheelchair (wearing my lovely hospital gown and robe) through the waiting room, up the elevator, down the hall, through the lobby area  and into the MRI waiting room! Anyway, then the MRI was just a regular MRI that probably lasted about 30-45 minutes.

So far no throbbing pain in my shoulder! Woohooo! 

Keep it together nerves.

Quarterly appointment update...a bit belated!

I've been a bad, baaaad blogger... and a big, BIG slackerrrr...

That being said, I had labs and an appointment at the end of April and the beginning of May... it's almost July! Wowza. Time flies.

I had an appointment with Dr. R on Cinco de Mayo to be precise. Unfortunately, we did not think to bring margaritas along with us to DFCI to help pass the time in the waiting room. Next time. ;)

Since celebrating Cinco de Mayo was a no go while waiting, I decided to spend some time in one of Dana Farber's healing gardens. Very peaceful, quiet space with floor to ceiling windows, plants, and benches for people to sit, pray, think, meditate, whatever. No talking, cell phones, or food are permitted inside.

Typically, when I first arrive at DFCI, I check in at the desk and get a bracelet with my name and information and a tracking beeper that I wear on my shirt. Shortly after checking in with the receptionists at the myeloma center, I am called by a nurse for my vital signs, weight, etc. After that, there is usually some time before I am called into an exam room.

Sometimes we wait in the waiting room, but sometimes I will let the front desk know that I would be on the third floor where the cafeteria is, and return a bit later. J loves the DFCI pizza. :)

But at this last appointment, since I was (and still am) on a mind/body kick, I decided to skip the cafeteria and go into one of these quiet spaces and listen to one of my relaxation recordings. It was really nice to be somewhere quiet before the appointment instead of hanging out in the cafeteria. I know, I know.... I'm so zen. ;) I did get interrupted by a big group of people who I think could be new residents or research fellows on a tour for a few minutes. But overall, a good experience. And don't worry, J did still grab some pizza before we headed back up to the 7th floor. :)

Pretty much sums it up :) 

I knew all of my test results before the appointment by checking Patient Gateway. So there were no surprises during this appointment. Everything looked pretty decent overall. My hemoglobin was low, and a couple other numbers just slightly "off."  My free light chain ratio was actually abnormally low for the first time. Dr. R said the ratio was, "a little worrisome," but hopefully at my next set of labs the ratio will pop right back into the normal range.

When I saw Dr. R back in January, I had requested to skip the 24 hour urine test for my April/May checkup since I had only had an abnormal result once and was quite frankly, really sick of the test! He agreed, and I was beyond thrilled. No big orange jugs of pee in the fridge! Yippee!

However, ironically, when I was at NIH for my (last) visit for the Natural History Study in February, I gave a spot check urine sample, as usual, and it actually showed an IgG Lambda monoclonal band. Never had that before. So of course after that, I was regretting my request to skip the 24 hour urine test in May.

I've heard and I know that the 24 hour urine test is much more sensitive than the urine spot check as it consists of testing big jugs of pee urine collected throughout a 24 hour period. Blah blah blah. So I know that I shouldn't be worried about it. And like clockwork, at my appointment Dr. R said that he wanted me to do the 24 hour urine for my summer appointment. I had anticipated he would say this, even if there was no IgG lambda band found in the spot check at NIH. Dr. R said sometimes a low free light chain ratio can indicate "urine spill." We'll see!

The ultimate goal.

NF-kappaB, inflammation, smoldering myeloma

Dr. R was recently interviewed on mPatient Myeloma Radio. You can find the recorded interview and transcript here:

mPatient Myeloma Radio: Where are we headed with new agents and transplant approaches in myeloma? Dr. Paul Richardson, MD, Dana-Farber Cancer Institute

I highlighted this part of the conversation because the discussion shifts to management of smoldering myeloma, including information about the mind/body program that I completed at Mass General!

Jenny: And is it something that could be used as preventative whether, let’s say, you’re in a state of remission or at a smoldering stage? I know it’s being thought about in smoldering, but even in the state of being in remission. I know patients don’t really care for the watch and wait kind of approach. They want to feel like they’re being proactive.

Dr. R: Well, I completely agree with you and I think that my patients know in my smoldering practice we’ve always tended to be proactive. We’ve looked at all sorts of various strategies. If anybody has a sniff of osteopenia, I’ve always been in favor of going after that with bisphosphonates. Interestingly bisphosphonates aren’t just bone strengtheners. These patients may or may not know they do much more than that. They have anti-myeloma effects. They also have effects on certain components of immune system including T cells. So there’s a sort of rationale to bisphosphonate use that perhaps goes beyond just simply bone strengthening but the fact of the matter is that early intervention in smoldering disease beyond simply watchful waiting is becoming a very important and active area of research.

In our own program we have a fantastic vaccine strategy that’s being developed in this area and this immunotherapeutic approach is here and have been developed by a number of colleagues and my colleague, Dr. Nikhil Munshi, has been exploring this. Also, we have as well that, the building on the platform of lenalidomide with the addition of elotuzumab. That’s another program we’re moving forward with, and my colleague Dr. Irene Ghobrial, will be hopefully taking that further as we go down the road. And in the same context actually, at a much different level, Jacob, my partner is a leading a mind-body study in partnership with the Mass General where we us simple mind-body techniques and relaxation, and sort of holistic approaches to try, and reduce inflammation and improve lifestyle strategies to reduce the risk of disease progression.

I mean that may sound incredibly fanciful but it’s actually not because what we’ve found is that with certain techniques and strategies you can reduce inflammatory signaling through this very interesting immunological access that does appear to have a strong endocrine and emotional base. And in collaboration with our colleague, Herb Benson, at the Mind Body Institute at Mass General, we’re looking at this as a real strategy. So there are a number of really interesting avenues where people can be doing more than watchful waiting, if you see what I mean Jenny.

Jenny: I think it’s terrific and I would love to learn more about that approach. Emotion does cause inflammation, so I could see a big connection with that. Well, that will be interesting to see.

Dr. R: Yeah, it’s actually quite interesting because what we did was, in a normal volunteer study, they used relaxation techniques and looked at the expression of inflammatory markers and what we found is that with specific relaxation techniques, downregulation of inflammatory markers could be achieved. And one very important clue emerged with an important switchboard that’s relevant to the biology of myeloma and that’s NF-kappaB. And what that was shown to do was be downregulated by using these mind-body strategies, and NF-kappaB is a very key switchboard to myeloma.

So that in a nutshell is the hypothesis behind this ten-week program that we’re doing. So there’s range of approaches. I must say I think it’s not going to be one. I think it’s going to be all of them put together that will give us the best outcomes but that’s how I would see it, yes.

Jenny: Well, that is great that you’re thinking about other aspects that affect those markers because I’ve heard about NF-kappaB quite a few times as being a really important pathway.

Dr. R: It is but I think the other point is that in managing this disease, a very holistic approach is relevant because we you recognize quality of life really matters and side effects are cumulative as well as potentially long-term. So this kind of multifaceted, multidisciplinary approach to disease management is really essential.

This is link describes the results of the initial research of the effects of the  relaxation response:

Study identifies genes, pathways altered during relaxation response practice

Relaxation Response Induces Temporal Transcriptome Changes in Energy Metabolism, Insulin Secretion and Inflammatory Pathways

Trending: Mindfulness, Meditation, Relaxation Response

I finished the 8 week 3RP program for smoldering myeloma patients at Mass General a little over 2 months ago. At this time, I am happy to report that I have been (mostly) successful in continuing my daily practice of eliciting the relaxation response. Huzzah! I have missed a few days here and there, but I am committed to continuing this practice. I feel like I'm getting to the point where when I begin to listen to the guided recordings, and I almost immediately feel calm and relaxed.

I should note that my goal for "practicing meditation/practicing mindfulness/eliciting the relaxation response/whatever you want to call it" is primarily for my physical health and well-being. I am Christian, and am not at all seeking "spiritual enlightenment" in any way, shape, or form through listening to the guided recordings that I find help me the most.

I'm not sure if I'm just more aware of it, but I have seen in the news more and more information regarding the positive effects of meditation. Perhaps I'm experiencing the same phenomenon that happens when you buy a new car and then you see it EVERYWHERE. Well, meditation is pretty much "trending" right now as far as I can see. Here are a few articles I've seen in the last few days:

Huffington Post - LOOK: What Meditation Can Do For Your Mind, Body And Spirit

NY Times - Exercising the Mind to Treat Attention Deficits

Mindful - 3 Reasons Why Meditation Isn't Overrated








My thoughts exactly... ;)

Yup... !

Boston Marathon & MMRF 5K

J and I went to watch the Boston Marathon this year and to the Red Sox game that same morning. It was a fun day cheering on all the runners and watching the game. Throughout the game, footage from the marathon as well as the results were projected onto the jumbo-tron. The positive energy and excitement was palpable. 

I participated in the Boston MMRF Race for Research 5K for the third year in a row at the end of April. The Boston location at Carson Beach is the biggest MMRF race with over 1500 participants this year. My team, the Myeloma Mashers, were able to raise over $2,000, and altogether the Boston MMRF race participants have raised $349,274.35 and counting for myeloma rearch! If you are interested in donating there is still time. Click here to donate!

About the MMRF:

The MMRF was founded in 1998 as a 501(c)(3) non-profit organization by twin sisters Karen Andrews and Kathy Giusti, soon after Kathy was diagnosed with multiple myeloma, an incurable blood cancer. The mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. An outstanding 90% of total budget goes directly to research and related programming. The MMRF has been awarded Charity Navigator’s coveted four star rating for 11 consecutive years, the highest designation for outstanding fiscal responsibility and exceptional efficiency. The MMRF has facilitated unprecedented accomplishments including helping to bring six new drugs to market that are now standard therapies for patients with multiple myeloma and being used or explored as treatments for other cancers.

Carson Beach...a little rainy this year. Not quite a beach day!

Shoulder Shenanigans

Well, it has officially been over 7 months (and counting) since I received my seasonal flu vaccine. Or, how I've fondly referred to the incident as the The Flu Shot From Hell. Seven months of not having a fully functional shoulder since getting the flu shot. The flu shot!

The last seven months have consisted of: 2 appointments with my PCP, numerous sessions of physical therapy, 1 shoulder MRI, 1 appointment with an orthopedic surgeon, 2 appointments with a shoulder physiatrist, 2 EMG tests, and 2 appointments with a neurologist.

All of this nonsense because on September 28th I got a flu shot that was placed at the top of my shoulder, into the joint, instead of into the deltoid. Since then, I have been accumulating diagnoses: rotator cuff injury secondary to a vaccine, bursitis, tendinitis, traumatic bone injury to the humeral head, neuralgic amyotrophy of the brachial plexus, parsonage turner syndrome, brachial neuritis, adhesive capsulitis, and shoulder restriction. Basically that all means that my left shoulder has kind of sucked and been out of commission the past 7 months. Throughout this time, I have been doing range of motion exercises and all my other PT exercises.

The good news is, after a second EMG test that was done recently (my first was in November), my neurologist found that my axillary nerve that innervates the deltoid muscle is now basically normal. Woohoo! My deltoid muscle is still pretty atrophied, but hopefully the muscle will start to come back over time.

My infraspinatus muscle showed 2+, and in November it was 4+. Normal is 0+. This means that my suprascapular nerve (which innervates the infraspinatus and supraspinatus muscles) is still damaged, but has improved. Both the infraspinatus and supraspinatus muscles also showed a "reduced pattern."

So basically, since I don't totally 100% understand all the EMG/nerve jargon, bottom line, truth be told: my nerves are starting to come back! Huzzah! Slowly but surely! My neurologist and a shoulder physiatrist both said I now have "mechanical" problems, shoulder restriction, and continued muscle weakness. So the nerves are getting better but my shoulder still causes me significant pain and doesn't work correctly. Back to physical therapy I go!

I should stop here and apologize: this is to some degree an overly whiny update. I am fine.

This whole shoulder situation has been more aggravating and annoying and frustrating than anything. Yes, I have had daily pain as well as the inability to raise my arm forward past 90 degrees and to the side past 45 degrees since September. Thank goodness I have one good arm! In all seriousness, I think the past 6 months has given me a lot more compassion for people who live with chronic pain and physical limitations to a much, much, much more significant degree. I cannot imagine that. Hopefully, in time, my shoulder will make a full recovery.

The thing is, I think if I got a shoulder injury...I don't know...for example, tripping down the stairs in the parking garage on the way to the flu shot...or falling down while crossing the street on the way to get the flu shot...or falling out of the chair while getting the flu shot...maybe I might feel differently about the whole situation. But alas, such is life.

I've been contemplating how I am going to manage getting any future shots into my arm. My neurologist recommended any subsequent shots be taken into my other shoulder. Not sure how I feel about that. I need one good arm! I was thinking maybe some sort of marking on my shoulders will hopefully ensure future LPNs/RNs correctly place the shots.

I thought this might be a possibility. Draw back is that while this tattoo shows the deltoid nicely, the vaccine location placement is not explicitly pinpointed. Or needlepointed I should say.

This tat I thought was pretty simple. Just aim for the middle of the circular snake!

Well, in reality I am not a tattoo fan, so I think my plan will be to bring in some sort of diagram to ensure proper placement prior to vaccine administration. 

Suffice it to say, I am going to skip the flu shot next fall...

Goodbye NIH...it's been real! :)

Well. I sort of forgot to write about my (last) trip to the NIH that took place in February. Last trip? Why, yes...last trip.

So, back in January I heard that Dr. L from the NIH was leaving the NIH and heading to Memorial Sloan Kettering Cancer Center in NYC in May. He is the PI for the myeloma clinical trials at NIH and the reason I had been going there. I was scheduled for my third follow-up appointment for the Natural History Study of MGUS and Smoldering Myeloma at the end of February. The reason I joined the Natural History Study over a year ago was to 1. Contribute to important research. 2. Have an "annual second opinion" outside of DFCI with a MM team that had particular interest in the precursor myeloma states.

Well, that was the plan over a  year ago.... For the study, participants are followed annually for 5 years. So I figured I was good to go for the next 4 years. After I heard that Dr. L was leaving, I contacted the NIH and was told that there was a possibility that the study would remain open for enrolled participants but they would not be enrolling anyone new.

Unfortunately, I was recently told that the final decision has been to close the study. Apparently, most of the myeloma team is leaving the NIH, however the treatment trials will remain open. I'm not sure if this is all public knowledge or not, but I believe the cat is out of the bag at this point...

I did end up going to my appointment at the end of February at the NIH... I saw a research fellow named Dr. M who is actually now a part of the MD Anderson myeloma team. The trip was easy, uneventful...I flew for free and got $8.00 reimbursed for food. Who knew it would be my last trip? I wonder what will be done with the data they have collected from the study so far... What's going to happen to the 40-50ish vials of blood I donated? What about my bone marrow? Can I get it back? ;)

Guess it's on to "plan B" for my annual second opinion...

Mind/Body Study for Smoldering Myeloma - complete!

I just finished the study/supportive care trial called, Genomic and Psychosocial Effects of the 3RP on Patients With MGUS and Smoldering Multiple Myeloma. This mind/body program was held at the Benson-Henry Institute for Mind Body Medicine, at Massachusetts General Hospital and lasted 8 weeks. My myeloma specialist, Dr. R suggested this study and I actually enrolled last October. I have to say I am sad that it's now over. The mind/body program is officially called, Relaxation Response Resiliency Program (3RP). The study was randomized and I was assigned to the "wait list control" group. After signing up for the study, I had to wait to enroll into the 3RP until January. During the time period between October and January I had my blood drawn twice and filled out different batches of questionnaires related to stress, worry, anxiety, etc. Then, this past January I started the program. The other participants in the study could be randomized into what is called the "immediate" group. The "immediate" group participants go through the program at time of sign up, and then continue to practice the relaxation response for 12 weeks after the program finishes.

I feel very blessed to have had the opportunity to participate in this study. What I learned I will continue to practice on my own for the rest of my life. Am I a completely zen, non-stressed person now? Uh no. ;) But I do feel like I have a lot of different strategies to help combat stress and make sure I live as healthy a life as I possibly can.


Mindfulness/meditation has been in the news more and more lately...or perhaps I'm just more attuned to noticing it! ABC News' Dan Harris recently published a book called, "10% Happier". Here is an excerpt from his book:  Dan Harris: Meditation is the Path to Happiness     Dan Harris: "10% Happier"

Meditation suffers from a towering PR problem, largely because its most prominent proponents talk as if they have a perpetual pan flute accompaniment. If you can get past the cultural baggage, though, what you'll find is that meditation is simply exercise for your brain. It's a proven technique for preventing the voice in your head from leading you around by the nose. To be clear, it's not a miracle cure. It won't make you taller or better-looking, nor will it magically solve all of your problems. You should disregard the fancy books and the famous gurus promising immediate enlightenment. In my experience, meditation makes you 10% happier. That's an absurdly unscientific estimate, of course. But still, not a bad return on investment.

Once you get the hang of it, the practice can create just enough space in your head so that when you get angry or annoyed, you are less likely to take the bait and act on it. There's even science to back this up -- an explosion of new research, complete with colorful MRI scans, demonstrating that meditation can essentially rewire your brain.

This science challenges the common assumption that our levels of happiness, resilience, and kindness are set from birth. Many of us labor under the delusion that we're permanently stuck with all of the difficult parts of our personalities -- that we are "hot-tempered," or "shy," or "sad" -- and that these are fixed, immutable traits. We now know that many of the attributes we value most are, in fact, skills, which can be trained the same way you build your body in the gym.

This is radical, hopeful stuff. In fact, as I discovered, this new neuroscience has led to the flowering of an elite subculture of executives, athletes, and marines who are using meditation to improve their focus, curb their addiction to technology, and stop being yanked around by their emotions. Meditation has even been called the "new caffeine." I suspect that if the practice could be denuded of all the spiritual preening and straight-out-of-a-fortune-cookie lingo such as "sacred spaces," "divine mother," and "holding your emotions with love and tenderness," it would be attractive to many more millions of smart, skeptical, and ambitious people who would never otherwise go near it.





This Ted Talk - Ted Talk: "If you raise your level of positivity, then your brain performs significantly better." - speaks to some of what I learned through the mind/body program in terms of practicing gratitude/appreciation, mediation, and living an overall healthy lifestyle. The entire talk is actually quite humorous, but this last part has information everyone should keep in mind:

What we need to be able to do is to reverse this formula so we can start to see what our brains are actually capable of. Because dopamine, which floods into your system when you're positive, has two functions. Not only does it make you happier, it turns on all of the learning centers in your brain allowing you to adapt to the world in a different way.

We've found that there are ways that you can train your brain to be able to become more positive. In just a two-minute span of time done for 21 days in a row, we can actually rewire your brain, allowing your brain to actually work more optimistically and more successfully. We've done these things in research now in every single company that I've worked with, getting them to write down three new things that they're grateful for for 21 days in a row, three new things each day. And at the end of that, their brain starts to retain a pattern of scanning the world, not for the negative, but for the positive first.

Journaling about one positive experience you've had over the past 24 hours allows your brain to relive it. Exercise teaches your brain that your behavior matters. We find that meditation allows your brain to get over the cultural ADHD that we've been creating by trying to do multiple tasks at once and allows our brains to focus on the task at hand. And finally, random acts of kindness are conscious acts of kindness. We get people, when they open up their inbox, to write one positive email praising or thanking somebody in their social support network.

And by doing these activities and by training your brain just like we train our bodies, what we've found is we can reverse the formula for happiness and success, and in doing so, not only create ripples of positivity, but create a real revolution.

The Relaxation Response, Stress, Meditation, Smoldering Myeloma

As I have written about previously, I am currently in a clinical trial at the Benson-Henry Institute for Mind Body Medicine at the Massachusetts General Hospital in Boston. The study is measuring the genomic and psychosocial affects of their mind/body program on patients with MGUS and SMM. I receive daily emails from Dr. Mercola (who I have mixed feelings about ;)), and today there was an article written by Dr. Kelly Brogan explaining the science of meditation: how meditation affects your mind, and how meditation alters genetic expression.

Here is the link to the article, which also includes a very interesting Ted Talk: "How Meditation Can Reshape Our Brains". I copied the two sections from this article, "The Science of Meditation" and "Meditation Alters Your Genetic Expression" below the link:

How Meditation Affects Your Health and Wellbeing

The Science of Meditation

Since we have come to appreciate the power of genetic expression as more than simply the 20,000 genes you're born with, we can now harness tools that optimize the "good" and suppress the "bad."

It turns out that our in-born DNA interfaces with an "exposome" or elements in our environment, and our conscious behavior, dictating exactly how the book of you will actually be written. With one fell swoop, things like spices, exercise, and relaxation can accomplish what pharmaceuticals could only fantasize about.

Some diligent researchers out of the Benson-Henry Institute for Mind Body Medicine1 in Massachusetts have begun to illuminate the mechanisms of meditation's effects, specifically the relaxation response which can be achieved through various forms of meditation, repetitive prayer, yoga, tai chi, breathing exercises, progressive muscle relaxation, biofeedback, guided imagery, and Qi Gong.

According to Dr. Benson, the relaxation response is, "a physical state of deep rest that changes the physical and emotional responses to stress (e.g., decreases in heart rate, blood pressure, rate of breathing, and muscle tension)" and is characterized by:

• Metabolism decreases
• Heart beats slow and muscles relax
• Breathing slows
• Blood pressure decreases
• Levels of nitric oxide increase

Meditation Alters Your Genetic Expression

Forty years of research support these claims. Only recently have the tools to assess gene-based changes been available. Far from summoning their inner monks, subjects in the Institute's studies simply pop in some ear buds and listen to a 20-minute guided meditation, passively. The Benson-Henry Institute has sought to quantify the benefits of the relaxation response by assessing gene expression before, after 20 minutes, after eight weeks of practice, and after long-term meditation routines.

In a series of papers, they walk us through the anti-inflammatory effects of this intervention. Genetic study2 of eight-week and long-term meditators demonstrated evidence of changes to gene expression – specifically antioxidant production, telomerase activity, and oxidative stress – as a result of the relaxation response.

They theorize that NF-kappa B gene sets may be the messenger between psychological and physical stress wherein the body translates worry into inflammation. It appears that the relationship between gene expression optimization and relaxation response is dose-related, so that increasing amounts confer increasing benefit. Even after one session, changes were noted, characterized by:3

"Upregulating ATP synthase —with its central role in mitochondrial energy mechanics, oxidative phosphorylation and cell aging — RR may act to buffer against cellular overactivation with overexpenditure of mitochondrial energy that results in excess reactive oxygen species production. We thus postulate that upregulation of the ATP synthase pathway may play an important role in translating the beneficial effects of the RR."

These changes represent an orchestra of base and high notes that synergize into a body-balancing harmony. The experience of the relaxation response also appears to change brain plasticity or cellular connections in areas of the brain associated with stress response.

These changes occur based on internal recalibration of the nervous system – with no manipulation of circumstantial conditions, meaning stressors remain the same. According to neuroscientist, Dr. Lazar,4 long-term meditation practice appears to be associated with preferential cortical thickening:

"…brain regions associated with attention, interoception and sensory processing were thicker in meditation participants than matched controls, including the prefrontal cortex and right anterior insula" and that these findings were further validated by an eight-week intervention trial.5

Clinically, mindfulness-based meditation practice has been demonstrated in randomized trials6 to improve depressive symptoms in fibromyalgia and to have lasting anti-anxiety effects after only eight weeks of group practice.7

There was also a recent article on meditation and managing stress from the ASCO Post:

Stress and Tumor Biology: Insights Into Managing Stress to Help Improve Cancer Care


This part of the article really stood out to me:

"The health-damaging effects of chronic stress are well documented in the medical literature, and research indicates that chronic stress affects almost every biologic system. With regard to cancer, there is little convincing evidence that chronic stress affects cancer initiation. However, there is extensive evidence that chronic stress can promote cancer growth and progression."


When I was first reclassified as smoldering myeloma, after being diagnosed with MGUS about 3 years prior, Dr. R stressed to me the importance of reducing stress. He told me that he had "seen" in other patients what stress can do as far as causing progression from the precursor states to full blown myeloma. He encouraged me to do yoga twice a day, go to mass every morning...do WHATEVER I had to do to reduce and manage stress. Well, I'm proud to say I'm working on that as we speak!

High Fives at the Farber & Aspirin

Last week I was at Dana-Farber for my first round of testing for 2014. Fairly uneventful visit. And, it was actually by far the shortest wait time I've ever had since being a patient there! We reviewed my labs and 24 hour urine from the week before. My m-spike is up slightly, free light chain ratio down slightly, and everything else is fairly "stable" as Dr. R likes to say. In the appointment he actually said, "Rock solid!" and gave me a high-five. Ha. ;)

Last spring Dr. R had recommended I start taking aspirin. He was hoping that daily aspirin would help settle down my fevers. He also mentioned that there had been studies that have shown that daily use of aspirin helps fight/prevent cancer. I wrote about that visit in this post last year: Hospital evacuation, 2 specialists down, and aspirin. He told me that they were in the process of planning clinical trials for MGUS and SMM patients using aspirin.


Well, hopefully the aspirin that I have been taking is making a difference because check this out:

Long-term aspirin use decreased risk for multiple myeloma

Regular aspirin use and risk of multiple myeloma: a prospective analysis in the Health Professionals Follow-up Study and Nurses' Health Study


Dr. Durie wrote about it in his blog as well:

Dr.Durie: Can an Aspirin a Day Keep the MYELOMA away?



I will return to Dana-Farber in April for labs andddd NO 24 HOUR URINE (I convinced him to let me skip since I've had 10/11 24 hour urine collections that were normal and could really use a break from the orange jug. I'm sure I'll repeat the test for the July visit. I have a repeat DEXA scan scheduled in April to see how my bone density is doing. We will review those results and decide next steps as far as repeating more imaging, bone marrow biopsy, and if I am going to begin zometa infusions. This will all depend on my results, in particular if I will have to repeat the bone marrow biopsy. Dr. R said that he doesn't want to "poke me" if the results will essentially be the same as they were in July and December 2012. He was very excited that I am participating in the Mind/Body trial for SMM at Mass General. He actually said that I seemed, "much more relaxed than usual."

Hmm, what's that supposed to mean? ;)

Relaxation Response Resiliency Program Session # 4 - half way there!

I can't believe session 4 of the 3RP program is tonight. Wow, time has flown by! I feel very lucky as a smoldering myeloma patient to have the opportunity to be a part of this and I am really enjoying the program/study. As much as the focus of the program is learning different ways to elicit the relation response through mindfulness, meditation, and other methods, what I really appreciate about the program is that it truly is a comprehensive "mind/body" approach to managing stress. The focus is not only on eliciting the relaxation response (though, a very important aspect!), but also on how to improve other important areas of life: social connectedness, nutrition, sleep, and exercise. Through this program I am learning about acute and chronic stress as well as the physical, cognitive, emotional, behavioral, and relational components/warning signs of stress. The program also has great information about optimizing social support and how there are different forms of social support such as emotional, informational, tangible, self-esteem/affirmational, and belonging.

This week, our "homework" was to continue daily practice of eliciting the relaxation response, record 3-5 appreciations daily, work toward 3 goals related to nutrition, exercise, sleep, or social support, and practice "mindful awareness" in daily living. Practicing "mindful awareness" could be many different things - even "mindful awareness of others" or "mindful eating" or "mindful exercise". In the session last week we practiced "mindful eating" with a Hershey's dark chocolate kiss. We examined the wrapper and tag, noticed the smell, and slowly ate it. During times of stress I often do "mindless" eating, meaning eating lots of (junk) food and not even tasting it! Hopefully being more mindful while eating (all the time, but even more in times of stress) may help me manage that particular stress response in my life.

And the "relaxation" begins!

Let's recap: Last summer Dr. R told me about a clinical trial starting in the fall for high risk MGUS and smoldering myeloma patients at the Benson-Henry Institute for Mind/Body Medicine at Mass General Hospital in Boston. The study was going to, "Measure the genomic and psychosocial effects of the Relaxation Response Resiliency Program (3RP) on patients with MGUS and Smoldering Multiple Myeloma". Well, I'm in the study and so far so good!

More information, from the clinical trial listing:

"This research study is evaluating the effects of a mind body medicine intervention called the Relaxation Response Resiliency Program (3RP) on stress and stress related symptoms in patients with monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (SMM). This research study is a supportive care trial. This means that the intervention program may improve general well-being and comfort, but is not considered a treatment or "cure" for MGUS or SMM. It is considered an investigational intervention because the investigators are examining the effectiveness of a new program - the 3RP - on reducing stress and stress-related symptoms in patients with MGUS and SMM. Standard management of MGUS and SMM involves regular monitoring without chemotherapy. Mind-body medicine, as defined by the National Institutes of Health, "focuses on the interactions among the brain, mind, body, and behavior, and on the powerful ways in which emotional, mental, social, spiritual, and behavioral factors can directly affect health." The 3RP is a newly designed group therapy program that through a variety of mind body principles and self-care interventions seeks to buffer stress and promote psychological resiliency and physical well-being. This study will examine the effectiveness of the 3RP in reducing stress and symptoms associated with stress in patients diagnosed with MGUS or SMM. Data from this study will also be used to assess changes in gene expression that result from 3RP intervention, particularly genetic pathways that are known to be dysregulated in MM."

Here is a little background on the Relaxation Response, from the Benson-Henry Institute's website:

The Relaxation Response

In the late 1960s, in the same room in which Harvard Medical School's Walter Cannon performed fight-or-flight experiments 50 years earlier, Herbert Benson, MD, found that there was a counterbalancing mechanism to the stress response. Just as stimulating an area of the hypothalamus can cause the stress response, so activating other areas of the brain results in its reduction. He defined this opposite state the "relaxation response."

The relaxation response is a physical state of deep rest that changes the physical and emotional responses to stress (e.g., decreases in heart rate, blood pressure, rate of breathing, and muscle tension).

When eliciting the relaxation response:

Your metabolism decreases
Your heart beats slower and your muscles relax
Your breathing becomes slower
Your blood pressure decreases
Your levels of nitric oxide are increased

If practiced regularly, it can have lasting effects. Elicitation of the relaxation response is at the heart of the BHI's research and clinical mind/body programs.

So, I was actually accepted into the study in October but I was randomized to the "wait" group. I passed the psychological evaluation (heh) and the program just started a few weeks ago. I have been to the first three sessions of the 3RP program. I have never really meditated before - or tried to elicit the "relaxation response" as BHI calls it - so this has been very new and different for me.

During each of the sessions the psychologist leads the group through a few different methods of eliciting the relaxation response. We also discuss our goals and progress as each participant has to set goals related to exercise, nutrition, sleep, and social connectedness -  social support and prosocial behavior. During the week in between sessions, we have to work on 3 SMART goals related to those areas. Each day we record progress toward those goals, as well as what we do each day to elicit the relaxation response. We were given CDs with guided recordings that we can listen to, but we can also use other recordings via YouTube or other sources that we find that we may prefer. Another part of the "homework" is to record 3-5 "appreciations" each day. Last week we also had to keep a sleep diary and record the time we went to bed and woke up, how many times we woke up in the night, how we felt when we got up, how alert/tired we felt the next day, and how many hours of sleep we got each night. I realized how bad my sleep habits are and how little sleep I get!

I am hopeful that throughout the next several weeks while I am in the program I will gain a lot of tools that I will use for the rest of my life. I'm learning both traditional/formal and simple/practical ways to elicit the relaxation response to counter the stress response. AND... hopefully influence the genetic pathways dysregulated in myeloma. Wouldn't that be nice?!