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.