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...