Thankful Tree, Spartan Race, BMBs, and Neurologist

How is it already December? This year, for the month of November, J and I completed our "Thankful Tree" like we did last year. The teacher in me enjoys such endeavors. Unfortunately, this year, due to the fact that we have a very, very active little monster in our house named Hennessy, this was the only place we could display the Thankful Tree to keep it from being attacked...

And, yes, we are the only people left in the world that have an old school TV.

In other news, J and I had a very random encounter at the Spartan Race at Fenway Park in Boston a couple weeks ago. 

J has an uncanny ability to spot and/or recognize the most random people. As we were looking for registration, J decided to approach one of the Spartan Race volunteers to figure out where the heck we were supposed to go. As we started to speak with this volunteer J all of a sudden said, "Hey, you did her bone marrow biopsy!" 

Hmmm. Huh? We realized that yes, this was the nice PA named Zach who did my second bone marrow biopsy at Dana-Farber. I say "nice PA" but I really should say, "the PA who did not hit my sciatic nerve." Thank you, Zach for not hitting my sciatic nerve during my second bone marrow biopsy. Zach and I both agreed that we would never have recognized each other as I was facing away from him during the entire procedure. Heh. Zach told me to make sure I request to have him for my next bone marrow, which should be sometime next year. Indeed. I definitely will.

And finally, a little update on my shoulder situation.

This could be me. Wishing I could have an arm replacement. Cursing the idiot nurse who did my flu shot into my shoulder joint.

I went back to DFCI to have Dr. R review the MRI of my shoulder like the orthopedist suggested. Dr. R concluded that the abnormality on my bone is not an infection of the bone or myeloma related. Phew. It is in fact a traumatic bone injury from the needle. Yep. Traumatic bone injury from a flu shot! The MRI also shows bursitis and tendinitis. 

I had the EMG test. The orthopedic doctor I saw recommended this test because he suspected I might have nerve involvement which could be causing my pain and weakness of my deltoid muscle. Ouch. Not the most comfortable test. The EMG showed abnormalities in my axillary and suprascapular nerves (which affects the deltoid and infraspinatus muscles) and the neurologist I saw last week suspects that I have something called "brachial neuritis". The upshot of the neuro consult was that nerve reinnervation takes forever to occur and 18 months from now (yes, that's a year and a half) whatever strength I regain will be it. Very disconcerting and I really hope my nerves get their act together because I'd like to be able to use my left arm again. :(

Back to DFCI... wait, it's not January?!

I decided to send an email to Dr. R to see if I could drop off the MRI of my shoulder for him to take a look at when he got a chance. I also mentioned to him the 1.75cm mass that was found on (in?) my upper left arm during PT while the therapist was massaging my shoulder. She had told me to show my doctor (which one?!) so I figured I'd mention it to him. I sort of blocked that out and never told anyone. Whoops. I kind of thought he would defer to my PCP. Anyway. Dr.R responded right away and said that he would like to see me to see the MRI and take a look at my "little lump." He said there was "no mad rush but suggest we squeeze you in fairly soon."

Baaaack to Dana-Farber I go!

Orthopedic Surgeon says, "Did you get hit with a hammer?"

So, I met with an orthopedic surgeon named Dr. T to go over the next steps in treating/resolving my flu shot induced shoulder pain.  During my appointment, he reviewed the MRI films and the radiology report. Overall, the MRI showed inflammation, bursitis, partial bursal tears, a collection of fluid (probably the vaccine!), and tendinitis. Not, "terrible things" as Dr. T put it and nothing warranting surgery, which already knew. However, he was concerned when he saw the state of my bone. He said it looked like I had been hit with a hammer.

He asked me if I had been having fevers or night sweats because he was concerned about infection of the bone. I told him I’ve had fevers for 4 years and had smoldering myeloma. He asked me when I was seeing my doctor. I said I actually just saw him and he replied, “Oh so he saw these images?” I said no and that I had told Dr. R about my shoulder pain but didn’t show him the MRI. I mean...why would I?! Dr. T said, “Your doctor really needs to see this.”

I totally freaked. Inside, of course. Well, partially outside. Not unusual for me these days.

In my head thinking rationally I knew that myeloma does not cause edema/contusion of the bone (right??) but he kept going on about how the bone was abnormal and Dr. R needed to look at the MRI.

Dr. T wondered outloud, "Is this myeloma? Is this infection? Is this where he jammed in the needle? Not really sure."

He brought in another named Dr. M who thinks I might have nerve damage and/or parsonage turner syndrome caused by the flu shot. Dr. M wants me to have an EMG to check for nerve damage. More needles! Basically, bottom line: nerve damage or not, there is nothing these doctors can do for me. I need to provide my shoulder time / physical therapy and the pain/loss of motion “may” resolve within 1 year or up to 2-3 years. Or, I could have permanent nerve damage if it's parsonage turner syndrome. Sweet.

As for my bone? Eh...not really sure what to do about that. Going to see if I can drop off the MRI at DFCI for Dr. R to review. And the beat goes on... :)

11/12/13: Unsettling conversations with the myeloma "rock star"

So I saw Dr. R this past week. My appointment at DFCI was scheduled for 4:30 but I knew from past experience we would NOT be out of there until at least 7:00 or 8:00. ;) Via Patient Gateway I knew all my results ahead of time… my m-spike was up (which is the case at every appointment) and my CRP was high. Everything else looked pretty stable. In my opinion.

Prior to meeting with Dr. R I met with a myeloma specialist from Milan. To be completely honest, I'm not sure I understood one word she said and visa versa. Lost in translation! Oh well.

A while later Dr. R came in. He told me I was, "Last but certainly not least." Heh. I went into the appointment sort of assuming that I would hear, “Oh everything looks good, small increase, stable, see you in 3 months.” Such wasn’t the case overall. I have been having fevers since I was diagnosed with MGUS 4 years ago and I was reclassified as SMM last summer. After seeing numerous other specialists, Dr. R and my ID specialist concluded that the plasma cells were driving/causing my fevers. Anyway, during this appointment I actually had a fever of 102.2. After him having witnessed me having a fever for the first time - I’d never had one at an appointment before - he reiterated again the plasma cells are causing the fevers and he has seen periodic fevers happen in people with smoldering myeloma or symptomatic myeloma. He was also concerned my CRP was up as this is indicative of the level of IL-6 activity which is important in keeping myeloma cells alive/growing. So that's not good.

He told me to make sure to get a prescription for biaxin specifically if I do develop a sinus infection, respiratory infection, etc this winter along with fever as biaxin targets IL-6. He said he might consider at this time putting me on biaxin on a continuous basis. Biaxin is actually used in treatment of multiple myeloma in combination with revlimid and dexamethasone. But he said being young and female that probably wouldn’t be the best as continuous antibiotics can cause yeast / stomach upset. He said that if my m-spike continues to creep up and my BMBs increase we’ll need to “start the conversation” about treatment which may be “an antibody, vaccine, or immunomodulator.” I almost fell over that he even brought up the "T" word as I truly pray I am not there yet and won't be for a long, long, time.

Dr. R did say he believes my condition is evolving as my m-spike has grown consistently over the last 4 years as well as the fevers I've continued to experience. He again talked about how aspirin is going to be used in clinical trials for MGUS/SMM patients as it targets IL-6. He suggested continuous aspirin for me back in April but I stopped taking it but I should probably try to start taking it again. He also suggested trying naproxen in addition to daily aspirin to treat the fevers when I have them. I swear the amount of Tylenol/Advil/aspirin/naproxen I've taken over the last 5-10 years is going to cause me severe liver damage! He wants me to go back in 2-3 months for blood work and 24 hour urine. Monitoring me very, very carefully is the plan. Awesome.

I mentioned my shoulder pain from the wrongly administered flu shot and told him I had an MRI and had been referred to an orthopedic surgeon who I would be seeing soon. He was apologetic but nothing he can really do about that obviously. At the end of the appointment and to some degree "lighten" the mood I showed him a photo that was made by Myeloma Survival.

http://www.myelomasurvival.com/1/post/2013/11/to-transplant-or-not-to-transplant-which-has-a-multiple-myeloma-survival-rate-advantage-as-presented-by-dr-paul-richardson-of-dana-farber-cancer-institute.html

He totally cracked up. Wellllll...he IS a myeloma rock star. AND we actually walked out of Dana-Farber around 7:00PM - not too bad. AND they actually now have a receptionist working there now until 8:00PM.

Hmmm I wonder why? ;)

November - 4 Year DFCI Anniversary

Today I have an an appointment with Dr. R at DFCI. This is my fourth quarter visit this year which will (hopefully) be my last visit of 2013. I know it's only November, but I am glad to see 2013 go.

Interestingly my first visit with Dr. R was just around this time 4 years ago - November 16, 2009. My m-spike that had been found that July was just a "trace" of IgG lambda and I was "officially" diagnosed with MGUS in August/September. After seeing a local hem/onc and getting my official MGUS diagnosis I decided to go to Dana-Farber. What an interesting 4 years it's been. I got married, changed jobs, moved (twice), got upgraded to smoldering myeloma, and had millions of blood draws, 24 hour urine, MRIs, PET/CTs, CTs, skeletal surveys, etc.

My first visit with Dr. R back in November 2009 was almost 2 hours long. I was the last patient of the day and Dr. R had to let me out of the old Dana-Farber building as all staff had left and the custodian was vacuuming. I believe my appointment was scheduled for 3:00 and we didn't leave until almost 8:00. I thought that might be a one time thing but the wait times and leaving at 8:00 when I have a late in the day appointment have just been things I've come to accept. :)

Hopefully this will be an uneventful visit!

M-spike & Shoulder

Well, I had my 3 month blood and 24 hour urine tests last week. Everything is looking... okay. Some numbers up, some numbers down, m-spike up. My m-spike is at the highest level it's ever been since it was discovered in July 2009 when it was just a "trace" of IgG lambda. I head to Dana-Farber to meet with Dr. R this week to discuss.

In other news, my shoulder saga continues. I still cannot believe all of this has happened from a FLU SHOT.  After a few sessions of PT with no improvement and significant pain even with passive movement, my PCP finally ordered an MRI of my shoulder. The MRI revealed two partial bursal tears and a whole bunch of other crap. Apparently shoulders are very complicated.


I've been in contact with Dr. Google to get to the bottom of this as the MRI report appears to be in another language. My PCP does not think surgical intervention will be warranted (thank God) but I do have an appointment with an orthopedic surgeon this week. Hoping this doctor will be helpful and provide some guidance in where to go from here. I'd like to be able to touch the top of my head again.

That would be swell.

Hopefully there will be cortisone shots in my future that may provide some relief.

Because, obviously that's what I really need - another shot into my shoulder. :/

Mind Body Update

In August I posted about a clinical trial commencing this fall in Boston at Mass General / The Benson-Henry Institute for Mind-Body Medicine - Mind Body Medicine for MGUS and Smoldering Multiple Myeloma. Dr. R had recommended I try to enroll as it would be "great for me."

Hmmm...say what? Me stressed?! No way.

This research study is a supportive care trial evaluating the effectiveness of a mind body medicine intervention called the Relaxation Response Resiliency Program (3RP) on stress and stress related symptoms in patients with MGUS and 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 multiple myeloma. You can read more about the study here:

Mind Body Medicine and MGUS and SMM: A Promising New Approach

Well, I am happy to report that I have been accepted into this research study. I’m super pumped. The study is randomized - participants are randomly selected to be in either the “immediate" group - which means they go through the 8 week 3RP program at time of sign up, starting at the end of October - or the “wait list” group which means they go through the 3RP program starting in January.

I’m a tad bummed because I was selected to be in the “wait” group – I need some mind/body medicine now! January seems so far away. Oh well…luck of the draw. Like flipping a coin. The study is enrolling ~96 participants AND…drum roll please… I was the FIRST person to sign up! Participant #1. True story.

This is the Clinical Trial Listing:

http://www.clinicaltrials.gov/ct2/show/NCT01955395?term=13-266&rank=1

The Flu Shot From Hell

Dr. R recommended I get the flu shot and pneumonia vaccine last year after my "upgrade" to smoldering and because I had been very sick during the winter with multiple sinus infections, chronic cough etc.

I followed his instructions and had both shots last fall. No issues minus one crazy male nurse giving me a hard time about the pneumonia vaccine. As a result, this past winter I was MUCH healthier: only sick with a cold 1-2 times, one sinus infection, and well, I did get the flu, but OVERALL I was much healthier than the previous winters. Also, exercise and healthy food helped!

Anyway, not wanting to jinx anything, and hoping for another "healthy for me" winter, J and I went to a flu clinic at our PCPs office about 3 weeks ago.

The Flu Shot From Hell story goes like this:

I entered the exam room and sat down. The LPN came over, used the alcohol wipe to clean around my shoulder/arm area. He said he was going to get the shot ready while the alcohol dried.

Okay, sure, not a problem.

Then, he came around to my left side and without any warning, or really looking at my arm at all, jabbed the shot into my shoulder. I literally jumped and yelled out something along the lines of, "OUCH!" He responded and said, "Whoa sorry! I guess you're a really small person!" and proceeded to inject the flu vaccine.

I looked over at my shoulder and a small amount of blood was dribbling out of my arm. And, I noticed the the injection site was at the TOP OF MY SHOULDER. Not into my deltoid or anywhere near my deltoid.

Nope.

AT THE TOP OF MY SHOULDER.

The LPN nervously stuck the band aid onto the injection site (this band aid was coming up over my shoulder, mind you) and I was on my way. Shocked and confused, but on my way. My arm was throbbing and I could barely move my shoulder.

Anyway, to make a very long, melodramatic story short, three weeks have gone by since this incident. These three weeks have consisted of ice and heat therapy, gentle stretching, shoulder exercises, and ridiculous amounts of Advil. After two trips to my PCP and a diagnosis of a "rotator cuff injury due to incorrect administration of the flu vaccine" - which could be just an injury that is causing pain and inflammation, a partial tear, or a full thickness tear...

I am headed to physical therapy next week.

Because I had the flu shot injected in the incorrect location on my arm.

Seriously?

I wish I was joking.

If after 4 weeks of PT there is no improvement, I will have an MRI of my shoulder and be referred to an orthopedic specialist.

This is how I feel about flu shots right now.





 Evil.

The Time You Have (In JellyBeans)

Very cool video that is worth watching.... less than 3 minutes! What will you do with your time?

My Favorite "Rock Star"

I am a member of several myeloma support groups online. In one of these groups, lots of research and information is shared among the members. This is a valuable way to learn from each other and gain new information related to the treatment and management of myeloma. Recently, some members have attended patient symposiums through the MMRF and IMF. It's a amazing how excited the group gets when we hear that members of our group saw, met, and spoke to some of the top multiple myeloma specialists in the world. We joke that these doctors are in fact "our" rock stars!

Well, one "rock star" that is at the top of my list is Kathy Giusti who is not only a myeloma patient, but the co-founder of the Multiple Myeloma Research Foundation. I've had a draft blog post entitled, "Kathy Giusti is a Rock Star" since I started this blog a year ago. Finally getting around to publishing it now. This amazing woman was diagnosed with smoldering myeloma in 1996. At the time, she had one daughter and she was determined to give her daughter a sibling. In 1997, she gave birth to her son. While fighting to survive and to complete her family, in 1998 she and her twin sister founded the Multiple Myeloma Research Foundation. In 2005, Kathy's myeloma became active and she underwent a allogentic (donor - from her twin sister) in 2006.


Kathy's story is incredibly inspirational and the work she is doing through the MMRF for myeloma patients is outstanding. Here are a few video clips and articles that explain this work much better than I can.

Kathy Giusti - Morning Joe 9/23/13

The Multiple Myeloma Research Foundation (MMRF) Launches Revolution in Precision Medicine to Accelerate Cures

Kathy Giusti - Congress Unplugged 2012

Kathy Giusti: Two Wars Against Cancer

Kathy Giusti - Cancer Can't Stop Me

Kathy Giusti: Time 100 Most Influencial People in the World

The Multiple Myeloma Research Foundation


I have had the opportunity to participate in two MMRF Race for Research events: last September and in April. I am proud to support such an excellent organization like the MMRF. Kathy Giusti is a rock star in my eyes, in more ways than one. :)

NIH says, Your m-spike is going up? Is it?

Umm... are those statements or questions?!

Alright, the blog has been very neglected the past couple of weeks between all of my jet-setting to Nantucket and the NIH and with.... dun, dun, dun.... school starting! Needless to say things have been very busy.

So, let's recap. A couple weeks ago I traveled to the National Institute of Health / National Cancer Institute for my second visit for the Natural History Study of MGUS and SMM. I traveled by myself which was kind of a big deal since it was only the second time I've ever flown alone and I was a tad nervous. Of course my flight from Logan was mildly delayed and had to be rerouted due to bad thunderstorms in New Jersey. Bad start to the morning! I found out our plane was going to arrive at Reagan National a half hour late and I was going to miss the NIH shuttle I had planned to take. There was of course another shuttle (2 hours later) but I was worried I was going to be late for my appointment and I didn't want to wait around at the airport. So, I decided against my better judgement to take a cab.

I tried to convince the driver to give me a flat rate to NIH but he wouldn't budge. Twenty minutes and a ridiculously expensive cab ride later, I arrived at NIH. Of course because of tight security the cab couldn't bring me IN to the NIH so I had to take a shuttle to actually get to building 10 since I was dropped off at the entrance completely across campus from where I needed to be. Oh well. A short shuttle ride later I arrived at building 10, had my blood draw, and gave my urine sample. Easy.

I wasn't sure which doctor I would be seeing at this appointment. Back in February, I saw Dr. L, Dr. R and a whole slew of myeloma research fellows. My husband and I counted 8 different doctors in the room with us. Turns out this visit was quite a bit more low-key. I saw a really nice doctor named Dr. Q. In the appointment room she reviewed my interim labs from DFCI. As Dr. Q looked through the papers, she said to me, "Your m-spike is going up? Is it?"

Okay. And as I wrote at the beginning of this blog post... is that a statement or a question??!!

The thing is, as you look at my SPEP reports from 2009 to present, my m-spike is in fact, going up. BUT, it's still small and overall "stable" since January, but definitely higher than a year ago.

Dr. Q and I had some good conversations re: my FISH results, bone density, and family planning. It was nice to have a female doctor for once; she was very empathetic to my situation. She told me about a study starting at the NIH using PET scans with a new tracer that is currently used in Europe. They are waiting on FDA approval to start using this. She said she would call me in a couple weeks to review my blood tests. I will return for my third visit in 6 months, and then annually after that. There actually is probably a lot more to write about in regards to this visit than what I am writing, but this is all I have in me for now! I actually recorded my visit on my phone so I will have to review that sometime and share some more details in another post. :)

My second visit for the Natural History Study of MGUS and SMM (minus the stupid cab ride grrr) was no big deal. YAY! Although, I must add on the shuttle ride back to Reagan I did forget to tell the driver which airline I needed...went through the whole airport and I didn't get off the shuttle. Totally wasn't paying attention. Driver was not happy. Whoops. But, overall quite less uh, terrifying? than my initial visit.

Abnormal Skeletal Survey & Perfect Blood Work: NIH Day One

Bone Marrow Biopsy & CT Scan: NIH Day Two

And. The best part was my flight was billed directly to the NIH. And. I got a "meal voucher." Not bad for a day of travel, free second opinion, and donating about 15 vials of blood and a urine sample to myeloma research, right?

However...ahem, THIS is what I got back from the meal voucher:

 

 

Let's see... a five, and three ones. Gee, that's eight dollars. Yes, that is correct. 8 bucks. It almost covered my bottle of water and muffin from the Au Bon Pan in building 10. ;)

NIH & Nantucket this week: Jet-setting?!

Within the next week I will travel to Nantucket and the NIH/NCI in Bethesda, Maryland. I feel like such a jet-setter! ;) Ha. Not. The Nantucket trip is to celebrate our 2 year wedding anniversary and I'm traveling to Bethesda for my 6 month follow up for the Natural History Study of MGUS and SMM. Let's see, which trip am I looking forward to more?

Nantucket:

 

Ahhh: Rest & Relaxation

NIH:

Ahhh: Stress & Anxiety

 

I'm hoping the NIH visit is uneventful... should just consist of labs and an appointment. I'm flying to Bethesda and back to Boston in the same day so there really CAN'T be anything more than that. ;)

 

When I was at the NIH back in February (Abnormal Skeletal Survey & Perfect Blood Work: NIH Day One  &  Bone Marrow Biopsy & CT Scan: NIH Day Two) I saw Dr. Landgren many other myeloma research fellows. I'm not sure who I will see this visit as I've heard which doctors you see can vary each visit as you are monitored for the Natural History Study. I do have quite a few questions prepared with respect to the testing I've had at the NIH vs. the testing I've had at DFCI as well as my bone density test results.

Dr. Landgren was actually recently interviewed. You can listen to the audio recording of the interview here:

http://www.blogtalkradio.com/mpatients/2013/08/02/dr-c-ola-landgren-national-cancer-institute


Or, read the read the transcript of the interview here:

http://www.mpatient.org/dr-c-ola-landgren-discusses-the-importance-and-availability-of-new-more-accurate-diagnostic-testing-to-identify-and-treat-myeloma-in-more-personally-relevant-ways-and-his-detailed-work-in-mgus-and/


The interview is very interesting. Dr. Landgren discussed the importance and availability of new, more accurate diagnostic testing, and his work in studying MGUS and smoldering myeloma. There are many parts I could comment on but one that stood out to me was when he spoke about the incuribility of myeloma. He said this:


"So really what I concluded for myself was that I think the main obstacle why we don’t have a cure for myeloma I believe is because we tell ourselves that it’s incurable. That’s what I kind of dislike. I didn’t like that. So I feel that we have to remove that. We have to stop saying that. So every paper I have written after I kind of came to that conclusion and every paper I will write in the future including papers I will review for journals and I review a lot of papers, I will comment on that to say, “Please remove that because we don’t know that.” "


I totally love that. I wonder if he's right, what could happen if doctors started using the phrase, "Myeloma is not curable - YET!" instead of "Myeloma is incurable." ?

It's all about the mindset, right?! Oh, and the crazy complicated cells and their environment. ;)

Looking forward to jet-setting this week.

Keep on truckin' !

So I had my 3 month appointment with Dr. R last week. Overall... it was fine. My m-spike was up a bit but that has been the trend for the last 4 years. My 24 hour urine was negative for monoclonal protein - but still have to do another collection in 3 months...grrr. My IgG was up a bit, lambda was up a bit, FLC ratio down a bit. The rest of my numbers that are sometimes high/low are still high/low. HOWEVER, my B2M that was higher than usual in April and was at 2.4 was down to 1.8. Very happy about that. Dr. R says everything overall is "stable". The devil is in the details. ;)

I had another discussion with Dr. R in regards to bisphosphonates as I have low bone density (osteopenia) in my spine. I am not starting bisphosphonates yet but I just wanted to clarify his recommendations for me. He did confirm that he would recommend zometa infusions for me every 3 months. He said that bisphosphonates do help prevent bone involvement and prolong survival but the studies have been "mixed" as to whether or not bisphosphonates help prevent progression to symptomatic myeloma from the precursor states. He's still mainly concerned about my recurrent fevers.

I also asked him about a study I had found: Timing of acquisition of deletion 13 in plasma cell dyscrasias is dependent on genetic context. This study suggests a possible role of Δ13 in the transition from MGUS to MM specifically in cases with t(11;14) or t(6;14). Well, I have monosomy 13 and t(11,14) and I showed him the paper on my phone. He wrote down the author and study on my visit note and said that he would, "look into it." However, he said that the study was 4 years old (2009) and he hasn't "heard much about it since." So. Yeah. We'll see.

As I wrote in my other post, Mind Body Medicine for MGUS and SMM, we also discussed the study starting at MGH/BHI using their 3RP program for patients with MGUS and SMM.

Overall... a good visit. At the end Dr. R said I need to just, "Keep on truckin'! " Heh.

I saw this picture posted on FB and it made me laugh. .

 

Always remember that the glass is really half full, despite how we may feel ;)

Mind Body Medicine for MGUS and Smoldering Multiple Myeloma

I met with Dr. R yesterday and I asked him, like I ask him almost every appointment, "Is there anything I can DO to help prevent progression??" He gave me his usual spiel about healthy eating, exercise, and stress reduction.

BUT, he also told me about a study that is commencing this fall at the Benson-Henry Institute for Mind Body Medicine at Mass General. The goal of the study is to:

"Measure the genomic and psychosocial effects of the Relaxation Response Resiliency Program (3RP) on patients with MGUS and Smoldering Multiple Myeloma".

This study was featured in the Mind Body Connector Spring Issue.  Read it!  It sounds promising.  Dr. R said that he thought it would be "wonderful" if I could participate and that it might help with stress reduction. Heh. He knows me well. I laughed and he said, "No this study is the real deal, no hocus pocus stuff."

I called MGH today to see if I could get more information. I found out they are not recruiting patients at this time but they will be "soon." I gave my information and I hope to hear back from them so I can sign up. The study is going to group patients by diagnosis - MGUS or SMM and then people will be randomly selected to be in the 8 week Relaxation Response Resiliency Program (3RP) at time of sign up or three months later. That's about all the info I got from the guy who answered the phone... I would love to participate if I can fit this study into my schedule this fall. I could definitely use some mind body medicine. ;)

4 Years Ago...

So four years ago, July 2009, my m-spike was found by a rheumatologist who I had been referred to via my primary care doctor. This rheumatologist told me this monoclonal protein was not really a rheumatological finding, but a hematological issue. He then sent me to a hematologist/oncologist to have the monoclonal protein evaluated further. I actually was organizing my bags of medical records and found what I wrote down during this phone call ...

My note taking skills have not improved since then! I hope my spelling has? ;)
 

 

In August 2009 I met with this general hematologist/oncologist who told me I either had multiple myeloma or monoclonal gammopathy of uncertain significance. I had to have more blood work, 24 hour urine collection, and a skeletal survey. I met with the hem/onc at the beginning of September and was told it was in fact MGUS, and not full blown multiple myeloma. A definite sigh of relief! He told me I needed to follow up with him in 6 months to repeat the 24 hour urine and blood work. This doctor was very nice, but not a myeloma specialist... plus he reminded us a bit of Rain Man. ;)

So my family members thought that it might be a good idea to see a specialist right downtown. My sister was able to get recommendations from doctors she works with...and Dr. R got the most votes! November 2009 was my first appointment at DFCI...at the old building which is so strange to think about - how different that building was from the gorgeous new building that opened a few years ago. And well, the rest is history.

A little update of what's happening currently: Last week I had my 3 month blood draw and 24 hour urine collection drop off. I meet with Dr. R this week to discuss the results. Most are finalized already and are looking fairly status quo. Hoping for no surprises! Que sera sera. 

A Short Film About Myeloma

This is a cute little video that I've seen circulating around. Worth watching.

My First BMB.... One Year Ago

One year ago today I had my first bone marrow biopsy at DFCI. This was my first bone marrow biopsy ever, approximately 3 years after my initial MGUS diagnosis. On this fateful day, I had no fear. I wasn't worried about the procedure as it was supposed to be a 'simple' aspiration. Little did I know this would be 4 aspiration pulls and a biopsy. This experience turned out to be the worst of my three bone marrow biopsies to date. Luckily, my last two were not so bad. Sadly, my left leg STILL hurts off and on to this day from the nerve damage!


Let's all remember... July 3, 2012 ;)  Bone Marrow Biopsy and Aspiration: Ouch

Summer & Zometa

Summer is here!

My plans for this summer are to....

 

Work on my fitness ;)

Read

 

Beach

 

 

 

 

In addition, I have my 6 month follow up for the Natural History Study of MGUS & SMM in August and my 3 month labs and appointment with Dr. R in July. I received my MD note from my last appointment in April. Some of the statements are a little unsettling... I guess I knew all of the information written but it's hard to see in black and white. A few quotes:

 

"Elizabeth is clinically stable and doing well overall. It should be noted that she has been fully evaluated by my colleagues in Endocrinology and she does not have any other explanation for her osteopenia. This, therefore, raises the possibility of early myeloma-related bone disease. At this juncture, bisphosphonate therapy has not been recommended by her endocrine consult team because of the risk to any potential pregnancy that she is planning. At this juncture, therefore, Elizabeth is not keen to proceed with bisphosphonate therapy."

 

"Elizabeth otherwise continues to do relatively well and in this context, I have recommended she continue with her regimen of simple analgesics for antipyretic effects. In this regard, aspirin may be an excellent choice. This may have the additional advantage of being useful as an anti-inflammatory and thus has some clinical benefit for her. In this context, we have recommended two to three tablets a day provided GI tolerance permits.

Otherwise, we will follow a policy of careful observation. In terms of her bone disease, this will require simply careful observation at this stage given her reluctance to in any way consider bisphosphonate at this point in time."

 

"It should be noted that she will continue on vitamin D and other supplements as needed. Elizabeth will return to see me again in the next several months. We will continue to monitor her course very carefully and she knows to call should she have outstanding issues or concerns".

 

 

 

 

Sort of feel blindsided by this note because I thought everyone was in agreement that I would not start zometa at this time. This makes it sound like I'm refusing to start, which makes me uneasy. Definitely need to inquire a bit more about this in July.



FISH Abnormalities

I've had all these blog posts in my drafts for quite a while and I am finally getting around to finishing them! Thrilling, right? It's amazing what I get accomplished when I am avoiding the things I actually need to do... (read: grading, report cards, etc. etc.)

Fluorescence in situ hybridization (FISH) is a type of chromosome analysis that detects abnormalities of specific chromosomes. I have abnormal -13, t(11;14), and 14q32(IGH sep).

Weird FISH.

My reports:

December 2012:

+11 (CCNA-XTx3) normal
13q- normal
-13 abnormal
17p- normal
-17 normal
t(11;14) abnormal
14q32(IGH sep) abnormal
-14(3'/5'IGHx3: normal

Interpretation:
The result is abnormal and indicates a plasma cell clone with monosomy 13 and CCND1/IGH fusion, t(11;14). Insufficient plasma cells were observed with probes for chromosomes 3, 7, 9, and 15. This result indicates persistence or relapse of this patient's plasma cell clone.



July 2012:

+9 normal
+15 normal
+11 (CCNA-XTx3) normal
13q- normal
-13 abnormal
17p- normal
-17 normal
t(11;14) abnormal
14q32(IGH sep) abnormal
-14(3'/5'IGHx3: normal

Interpretation:
The result is abnormal and indicates plasma cell clone with monosomy 13 and CCND1/IGH fusion, t(11;14). At diagnosis, the combination of -13 and t(11;14) has uncertain prognostic significance in multiple myeloma. The prognostic significance for these abnormalities in MGUS, amyloidosis, or smoldering multiple myeloma is unknown (Fonseca et al., Blood 202: 4569-4575, 2003).



From what I understand and have been told, monosomy 13 and t(11,14) are both common abnormalities and are seen within MGUS, SMM, and MM patients. Also, t(11, 14) "may" be a more "favorable" risk factor. And monosomy 13 is not quite as terrible as doctors once thought. So, good news right? Dr. R said that for me they wouldn't have much prognostic significance as they would sort of cancel each other out... one more favorable, one a little less ideal. At the NCI/NIH Dr. L said that they "are just letters and numbers, we don't entirely know what they mean..." and basically, not to worry too much. I posted my results and this is one very helpful response:



Monosomy 13 (loss of 1 of the 2 copies of chromosome 13) in the absence of other high risk markers is not considered high risk in this day and age. It would be considered an intermediate risk factor. It should be noted that 40 - 50% of patients will have a 13q deletion (only a portion of 1 copy of chromosome 13 missing) or monosomy 13 and 40 - 50% of patients do not have high risk disease! You also have chromosomes 11 and 14 fused together. This is also a more common cytogenetic abnormality and is considered a better risk marker.

The statement, "This result indicates persistence or relapse of this patient's plasma cell clone", means that they were able to detect myeloma chromosome abnormalities in both of the bone marrow samples, suggesting that there were still myeloma cells left around in Dec 2012. If there were no myeloma cells left, the chromosome abnormalities would not have been detected. The blood and urine tests and numbers of myeloma cells on the 2 biopsies will give you a better sense of how things have changed in that period of time.



Chromosomal Abnormalities May Identify Smoldering Myeloma Patients At Higher Risk of Progression

According to the study the (11,14) translocation would put me into the "standard risk" group. This group had a median progression time of 4.6 years, a median survival time from SMM diagnosis of 12.3 years, and an overall survival time from MM diagnosis of 7.2 years.

YIKES.

That, of course, is not going to happen because I am not a statistic.



And lots of other information... lots of it is outdated.

MMRF: Genetic Abnormalities in Multiple Myeloma

14q32 Translocations and Monosomy 13 Observed in Monoclonal Gammopathy of Undetermined Significance



Choosing to ignore this study, plus it's super old:

Monosomy 13 is associated with the transition of monoclonal gammopathy of undetermined significance to multiple myeloma.

Bulging Bicep - confirmed?

Back in February I was at the the National Institute of Health / National Cancer Institute in Bethesda, MD for the Natural History Study of MGUS and SMM. While there, I had blood and urine tests, a bone marrow biopsy, as well as a skeletal survey. The skeletal survey showed a possible abnormality on my left humerus that the myeloma team believe could be a lytic lesion. I joked with them, "Are you sure it's not my bulging bicep?" They concurred it was not. They wanted to investigate this abnormality further and I ended up having a CT scan of my humerus the next day.


In case you missed it.... I wrote about this experience here: Abnormal Skeletal Survey & Perfect Blood Work: NIH Day One and here: Bone Marrow Biopsy & CT Scan: NIH Day Two and here: Alliteration fan? Left (Humeral) Linear Lucent Lesion  and here: Little Line = Left Linear (Humeral) Lucent Lesion



The CT scan revealed a "lucent lesion" on my humerus. The doctors at NIH said that it was probably a natural variant or groove within the bone, however I should have it compared to my PET/CTs from 2009 and 2012 from Dana-Farber to be sure, and to watch the area over time. More watching and watiting...awesome. When I saw Dr. R in April, I gave him the discs of my skeletal survey from 2009 (done when I was first diagnosed from a general hem/onc) as well as from the NIH, and the CT scan so he could compare them to the scans I'd had in Boston.

Turns out.... according to Dr. R and the radiologist at DFCI who reviewed all the skeletal surveys, PET/CTs, and the CT scan, apart from my osteopenia, this questionable "lucent lesion" identified at the NIH is in fact the insertion of the deltoid and normal.

Well, well, well... whaaaaaaaat?

Blows my mind. Who is right here?

So, apparently, this abnormality WAS in fact due to my bulging bicep...er, bulging deltoid? ;) Sweet.

Whole Body MRI? Who knew.

Okay, so I've had scalp to toes PET/CTs, MRI of my spine, skeletal surveys, DEXA scan, and a CT of my arm...

BUT, with my crappy low bone density and humeral lucent lesion, I want a whole body MRI (wbMRI)! Sounds much more efficient than all this piecemeal baloney. Plus no radiation!


Totally going to ask about this test at my next appointment in July.


Abstract from ASCO:

Longitudinal whole body MRI (wbMRI) in monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma.

$100,000 here, $100,000 there...

As I am a patient at Dana Farber, I get a lot of newsletters and mail from them. One newsletter I received the other day had an article about Dr. R.

The basic gist of the article was that a multiple myeloma patient Dr. R has had (since 1993...!!!) recently decided to give him $100,000 to support his research. Wow!

Wouldn't it be nice to be rich? :)

The husband of the patient was quoted saying, "Causes don't raise money. People do. It was our absolute pleasure to support him, and our only hope is that when others learn of our gift, they too might be inspired to give what they can."

Things that make you go, "hmmmm"

IMF Video:

Multiple Myeloma: International Myeloma Foundation : Live! The Boca Raton Patient & Family Seminar

If you click the link and zip ahead to ~1:31:54 you will hear Dr. R say something along the lines of...antibodies...there is an emerging role of vaccination for minimal disease...moving toward tailored treatment and the goal of a functional cure...driving quality of life.  Something like that. ;)

THEN ...

This next part of the discussion made me really take notice. Dr. RK, who is like the godfather of MGUS, was asked, "How do you see things moving forward?"


His response, which I found very, very interesting was this:


I think in the long, long, future what we need to address is smoldering myeloma and MGUS which are the precursors of multiple myeloma. Something has happened to that patient that allows this clone of plasma cells to escape and then it is limited in the case of MGUS and then in the patient of smoldering myeloma it's limited a little later on...the body has allowed that clone to grow larger and then for for some unforeseen reason has stopped its progression as well. So I think ultimately, if we can get to the point where we can do something about the MGUS when it appears if we can do something to wipe out that clone at that point in time we wont have to worry about anything else and that's the ultimate long, long, term goal.


Hmmm.... well, okay... So, in the "long, long" future they need need to address smoldering myeloma and MGUS and the ultimate "long, long" term goal is to do something about MGUS when it first appears? Um, how about let's make this a goal now?! :)

I watched to the end of this video... some interesting discussion around MGUS and SMM.

MMRF Race for Research: Boston Strong!

On Saturday I participated in the MMRF Race for Research Run/Walk 5K at Carson Beach in South Boston. My husband and I ran in the race in September last year. This time around, we had a full team including some of my family, friends, and someone I know from a support group on Facebook!

It was an absolutely beautiful, cool, morning - perfect for running!


Carson Beach


 

 

Team Sign :)

 

Dr. R wasn't able to speak this year :(

 

 

 

 

 

Ready...set...

 

 

 

 

I finished with a somewhat respectible time of 31:11

 

My awesome team, the myeloma mashers, has raised $2,375.00 to date and the Boston MMRF race as a whole has raised $226,893.01 so far!

Official times,  pictures, and information on how to donate can be found here.

Boston Strong!

Hospital evacuation, 2 specialists down, and aspirin

So it's been quite the week... in more ways than one. I have seen all of my specialists – rheumatologist, ID specialist, endocrinologist, and Dr. R all within the last week. All my blood tests were pretty much FINE. Of course they were FINE.  I saw an endocrinologist who ruled out all other conditions that could be causing my low bone density in my spine. My T & Z scores of my L-spine are -2.2, classified as osteopenia if I were post menopause, but I’m not. Osteoporosis is classified with scores starting at -2.5.  The endocrinologist does want me to have a bone density scan within the next year and I will see him to review the results. He told me to be careful of falls and “no wrestling”. Heh. I wrote that down so I wouldn’t forget. ;) My ID specialist says all conditions within his specialty have been ruled out including the periodic fever syndrome, but he would “keep me in mind” if he thinks of anything or hears of any studies involving people with chronic fevers. My rheumatologist said as long as my joint pain is gone he can see me in 6 months and then just as needed. Two specialists down! YAY! Another bit of excitement was that there was an evacuation while I was at Brigham and Women's for that appointment. Yikes... false alarm, obviously.  

http://www.boston.com/lifestyle/health/blogs/white-coat-notes/2013/04/17/post-marathon-jitters-and-unattended-car-lead-evacuation-brigham-and-women/m70j1UcKeVGs1XgSPomgNM/blog.html

I am still having fevers and all specialists have concurred that they are being caused/triggered by my MGUS/SMM. Also, the low bone density in my spine is due to the MGUS/SMM as well because the most significant loss is in my spine and that tends to be where myeloma presents.  So…that pretty much sucks. But, at least at this time, everything with me is pretty good minus the low bone density and my 10ish% plasma cells. Dr. R said that because of the low bone density in my spine and the fevers, I am definitely more smoldering than MGUS. But, I guess I already knew that. He is going to have a radiologist review/compare my lucent lesion from this February and 2009 to see if there have been any changes within the bone.

Good news for me is that no one wants to treat my low bone density at this time...for a couple of different reasons. I am going to continue vitamin D and calcium supplementation and weight bearing exercise. Dr. R recommended 2-3 aspirin daily to hopefully get the fevers under control (also fights/prevents cancer according to a study he referenced). Within the next year or so I will have a repeat BMB, PET/CT, and bone density.

And the beat goes on... my favorite quote from my appointment with Dr. R was this, "Elizabeth, please don't take this the wrong way. But we as medical professionals find you very, very interesting."

Heh... not sure that's a good thing. :)

I Heart Boston

I was at Dana-Farber today for my three month blood draw and 24 hour urine collection drop off. I see Dr. R, my rheumatologist, and an endocrinologist within the next week to hopefully get to the bottom of what is going on with my crappy, low, bone density.

I was a little nervous driving into town today as I wasn't sure if there would be road closures en route to DFCI, around the finish line area, or around Brigham and Women's Hospital due to the events of yesterday. Turned out to be pretty much, "business as usual." There were a couple security guards by the entrance to DF... I got a little nervous my plain brown paper shopping bag (containing my urine jugs!) would get searched but I went right through.

I've been to various spots on the route of the Boston Marathon many, many, times - since I was a little kid - and have been at the finish line within the last couple of years. Luckily, yesterday I was housebound with the 24 hour urine collecting.

My Facebook newsfeed is currently flooded with friend's posts of pictures, articles, and references to Patriot's Day, Marathon Monday, and Boston.

Here are a few...


What Patriots' Day Means

 

 

 

 

Yanks to play Sweet Caroline

 

 

 

 

 

 

 

 

"People from around the country might think that this is just the day that the Boston Marathon is run. It isn't. In Massachusetts, Patriot's Day is a holiday where the entire state takes off from work and joins together to cheer on and participate in the human endeavor of challenging oneself to accomplish a tremendous physical feat, to promote charity, and to celebrate life and community. This was an attack on the foundation of the Boston community."




 

 

Just so sad.

Bone Density / DEXA Scan - possible osteopenia at 29 - whaaat?

So, I've had an extensive list of questions for Dr. R every visit I've had since last July. At every appointment I never get around to asking all of them - too much to talk about!

One of those questions on my list was, "Do I need a bone density test?" I wrote about this back in December - Skeletal Survey, PET/CT, MRI, DEXA. A bone density was one test that I have never had since my diagnosis in 2009.

I finally inquired and he confirmed that a bone density would be a good test for me to have. I assumed, stupidly, that the test would be normal - how bad could my bones be, I'm only 29! I wanted to have a baseline as I know bone loss is a side affect in MGUS/SMM.

Multiple Myeloma, Smoldering Multiple Myeloma, And MGUS May Be Linked To Osteoporosis

There was a bit of back and forth regarding whether I would have the test at DFCI or just have my PCP order it. I ended up just having the test ordered through my PCP and there was a little confusion on whether or not my insurance would cover the test due to my age. My PCP repeated over and over, "Please be assured that bone loss occurs over many years and even decades. There is no urgency for you to have this test at this present time."

Boy, was she wrong. Long story short, I had the bone density test on Friday.

The test in itself was a piece of cake. By far the least invasive, shortest test I've had to date. I didn't even have to change into a gown or take off jewelry.

 

I met Pedro, the hilarious technician who would be preforming the test. He was a hummer. Meaning, he hummed between every sentence he said.

"Sit right here. hmmmhmhmhmm. Lay your legs out straight. Hmmhmhmmmm. Move to your right slightly. Hmmhmmhmhmhmmmmmm."

You get the idea. ;)

A few quick scans later I was done. I asked Pedro why not ALL bones are scanned (instead of just my femur, lumbar spine, and hip) and I was told that those bones give an indication of what bone density is throughout the body. Doesn't really make sense to me, but whatever. It makes me think of bone marrow biopsies...how can a tiny 1-3cm piece of bone be enough to determine how many plasma cells are in the whole body? Crazy.

I was told that the results of the DEXA scan should be finalized by that afternoon. I decided around 4PM to call my PCP's office to see if a nurse or someone could read me the results over the phone...again...assuming they would be normal.

Nope!

I should have known it was bad news when my actual doctor called me back immediately.

My bone density was not normal. Far from it, in fact. All my T-scores were abnormally very low. My doctor is most concerned with the low density in my lumbar spine because it has a T score of -2.2. Osteoporosis is classified starting at -2.5. :( She said that if I were a postmenopausal woman (I am not) the -2.2 T score on my lumbar spine would be considered osteopenia.

Fudge.

(Fudge is not the actual word I repeated in my head after I heard these results but I'll keep this post PG ;))

My PCP had no recommendations for me other than weight bearing exercise (which I already do) and calcium+D supplements (which I already take). She couldn't give a recommendation regarding how to treat this low bone density in a 29 female as oral bisphosphonates are only typically given over 5-10 years. That's really not going to help me at age 29. She let me know she had already faxed the reports to Dr. R and suggested I possibly see an endocrinologist who should help determine appropriate steps moving forward.

Interestingly, Dr. R referred me to an endocrinologist at BWH when I first started seeing him - one of the many specialists he's referred me too. He thought  my thyroid was slightly enlarged - but the ultrasound and all blood tests were normal. That was a little over three years ago.

Needless to say I'm really upset about this, especially since my PCP gave me a hard time about getting the test. Just makes me realize how important it is to advocate for yourself and fight for the tests that are needed. When I had asked Dr. R about a bone density test about a month ago he agreed that it would be an important test for me to have as a baseline.

I really thought my bone density would be normal. Can't I catch a break? Just not in my bones which apparently have me confused for an old lady! Ugh. When it rains, it pours sometimes.





The importance of bone density/DEXA scans: Study Suggests MGUS Patients Receive Inadequate Evaluation, Follow-Up, And Treatment

Monitoring MGUS should include DEXA scans: Monoclonal gammopathy of undetermined significance: a consensus statement

March for Myeloma

Well, March has quickly come and gone - March is multiple myeloma awareness month. Who knew? Not me. Until this year, that is. Last March multiple myeloma was the farthest thing from my mind and I definitely didn't know that March was the month designated for MM awareness. Of course I did know the basics of MGUS and how it relates to MM but definitely no where near as much as I know now.

The Boston MMRF Race for Research is coming up in a few short weeks! So far the myeloma mashers have raised $1000.00! If you would like to contribute to my team, please click here. :)

Also, someone posted this link from the IMF Advocacy Team a few weeks back. If you have time and are interested, click the link below and submit the email message to your state representative.

Federal Parity Bill Needs Your Voice


From the IMF:

IMF Advocacy Team - Federal Parity Bill Needs Your Voice

Email your state congressional representative today.

 

With your help last year we secured 53 co-sponsors for the Cancer Drug Coverage Parity Act of 2011 authored by Rep. Brian Higgins. A new congressional session starts every two years, which means we must ask those representatives who sponsored last year to recommit to standing up for myeloma patients.

Myeloma patients across the country need you to take action!
The sponsors of the Cancer Drug Coverage Parity Act are preparing to reintroduce their legislation in the new congressional session. We need you to reach out to your member of Congress to ask him or her to be an original co-sponsor to the bill. The more bipartisan original co-sponsors we have, the more likely the House will move to vote on the legislation. This bill will eliminate the disparity in insurance coverage and reimbursement between oral and intravenous cancer treatment.

Please enter your zip code below to email your congressional representative to ask him or her to support cancer patients today!

 

Thank you for your help ensuring all cancer patients have fair and equal access to all types of treatments!

 

In the empty box below, please write a few sentences that tells a personal story. Whether or not you have faced treatment inequalities, a personal statement of your support will help personalize this issue for legislators. You should include information such as status regarding myeloma (age, when diagnosed, health today, treatment needs.) If you are writing about someone else, please use only their first name and describe how you know them or their relation to you.

If unequal reimbursement has affected you or someone you know, please include your experience such as: I did not get the care I need because insurance reimbursed more for a different treatment; I have gone into debt to pay for what insurance doesn't cover; my treatment was delayed waiting for coverage to kick in.


[personal message]

I'm concerned that many insurance plans treat oral chemotherapy differently than other forms of chemotherapy. It just isn't fair for patients to have a much larger financial burden for oral forms of chemo, especially when many oral treatments don't have other alternatives. Patients, families and their medical providers should be making treatment decisions based on what's best for the patient, not because of the cost.

Please be an original co-sponsor to the Cancer Drug Coverage Parity Act so cancer patients have fair and equal access to all types of treatments. To co-sponsor, please contact Matt Fery in Rep. Higgins' office at matthew.fery@mail.house.gov. I hope that I can continue to count on your support and leadership. Thank you!

Little Line = Left Linear (Humeral) Lucent Lesion

I received the CDs from my skeletal survey and CT of my arm from the NIH. I have NO idea how to view the images from the CT scan. It said there were 690 images...of my arm...how is that possible?! I gave up and I stopped pretending I knew what to look for.

On the other hand, like I posted a while back re: my skeletal survey from 2009, viewing the images from my recent skeletal survey was pretty simple and straight forward. Below is the image of my left humerus from February. Can you find the thin, little, line? Also known as...the "lucent lesion." I could right away. Other people I've shown had a little more difficulty....

See the little line?
Left humerus February 2013

Below is the image of my left humerus from August 2009. I don't see the same little line. So, hopefully it was always there but it's just not showing up on this image? Let's hope so.

No line.

Left humerus August 2009

Alliteration fan? Left (Humeral) Linear Lucent Lesion

I have a lot of the reports from my recent trip to NIH. My skeletal survey and CT scan of my arm were the most uhm, startling? to see in black and white. I present to you... my skeletal survey and CT scan reports. So thrilling, I'm sure. :) 



DX Bone Series
02/19/2013

Patient: ******, ELIZABETH **** MRN: ******

REASON FOR EXAM (Entered by ordering clinician into CRIS): For SMM Only

Findings: AP and lateral skull: Normal. Calvarium no lytic lesion.

Entire spine: Cervical spine AP and lateral: Normal alignment.

Disc and joint spaces intact. No lytic lesion.

Thoracic spine: Normal alignment. No lytic lesion. No compression.

Lumbar spine: Disc and joint spaces intact. No lytic lesion or compression.

Rib series: No fracture. No lytic lesion.

Upper extremity long bones: Small mid humeral lucent lesion near the insertion of the deltoid. Forearms negative.

AP each hand: Normal.

AP pelvis: Hip joints intact. No lytic lesions.

AP lower extremity long bones: No lytic lesions. 

AP and lateral feet: Negative.


Impression: Focal left mid humeral lesion, suspicious for myeloma. Consider additional imaging, PET CT or MRI.

Suspicious for myeloma, huh? Hmmm.

But, 24 hours later...

Just kidding!

Exam: Exam Date: Accession #: Ordered By:

CT Humerus - * CT Humerous w/o Contrast - 73200

02/20/2013

Patient: ****, ELIZABETH ******

MRN: ******

REASON FOR EXAM (Entered by ordering clinician into CRIS): Evaluate suspicious lesions from skeletal survey on 2/19 to left humerus

Comparison: Bones series February 19, 2013.

Procedure: High resolution noncontrast axial CT left humerus.

Findings: Small linear lucent canal in the vertex mid left humerus corresponding to the plain radiographic finding. No convincing evidence of endosteal scalloping. This lucency is in region of the deltoid musculo tendinous insertion. No focal lytic lesions are seen in the osseous structures included on the study.

Impression: Lucent left humeral lesion probably related to variant, a vascular groove. No convincing evidence of myeloma.

 



Huzzah. No convincing evidence of myeloma. Do you like how I bolded all the important heart attack provoking parts of the reports? Heh. Seriously, none of this is major. I'm supposed to have Dr. R compare this recent CT scan of my humerous to the films of the PET/CTs I've had in December 2009 and August 2012 and we'll basically just watch the area to see if it develops into anything. Aside from the minor heart attack this experience caused me, hopefully this left linear lucent lesion will not be a big deal. :)